Amira has been at school for 6 weeks now and we have our up and down days! Admittedly sometimes it is more down than up! She does however love her school! Sometimes!!! She is still in a class on her own at the moment and will be starting assessments after the half term has finished!
Speaking of half term! It is horrendous!! The compleate break in routine was killing us! The aggression severely escalated and it is so unpredictable! I would pull my hair out but Amira is beating me to it and taking out great clumps! I am very emotional at the minute and I admit I am truly struggling to cope! I knew her getting into school would never be a quick fix, I also was told to prepare for a very tough battle! God were they right! We have implemented timelines again! This time we have one for everything! Day to day schedule, getting up, going to toilet, washing hands and bedtime! All of the above work, but one!! Give you a guess what one!! I of course am still exhausted as when Amira does go off to school you would think I would go to sleep wouldn't you! Nope! Just cannot do it! There was a time I would sleep all day if allowed! Not now, once I'm up, I just cannot get back! I am the typical mum with a list that runs through my head of the hundreds of things I should be doing!! I literally have no energy left, running on empty! I love my kids both of them, but I have to say I am losing my temper so easily Right now. Worst if all, I know in doing it and cannot stop myself! I am about to blow at anytime! It's not even anything major that tips me over! How pathetic! On the flip side I still cry every night, soak the pillow through, sob into it so no one can hear you sort! It's truly sad! You would think I would have dealt with it by now, right?? I haven't! I still have trouble getting past certain things! I just want to do normal things, I want to paint her nails and take her to the shops! I want her to go to dance classes or gymnastics or if like me Karate! Something! I want her to have friends!!! I want her to talk to me, I want her to tell me she loves me, not just repeat a phrase! Yep I know I read that too! All of it was I WANT! Not what she wants! Amira wants to sit in the bed room or Office and play on the computer/DVD player or my phone and that is it! Of course that is when she is calm! When not it is like the Tasmanian Devil spins through the house!
Half term over and assessments have all been happening, school have their own everything! Consultants Peadiatricians etc! We have started a new course of Medication to treat Amira's ADHD as no one had ever looked at treating it! Methylphenidate only a small dose to start. Amira is underage to start this course of treatment! They usually don't medicate for ADHD until the age of 7! Amira was 5 when we started but the DR feels it is necessary! I tossed and turned about giving her this medication! Reading all the side effects and all the information just scares you even more! I felt like I was poisoning her! Drama queen moment you may think but if you ever have to do it you will know how I felt! The day I gave her it I cried my eyes out! This was the first day of a rocky road! I was well aware it can take years to get the doseage and type of drug right! Some reason I was hoping this may help sleep! 3 days in and we had 9 hrs sleep in one night!!!! HOOORRRRAAHH!!!!
This went to 7hrs the following night.
Then to 4hrs.
Then to 0 hrs!
Damn, damn and double damn!
I had been conducting a sleep chart with the schools help and in one week Amira averaged 15-20 hrs sleep total!!! A week! 7 days 15-20 hrs!!! And that includes any naps at school that can be up to 2 hrs a day! When Amira does fall asleep she just drops and you cannot wake her! Not just me that says that now even the school agree!
How many people do you know could manage on that! Hands up! I cannot function! I know I am a terrible mother! If there is a short cut, I will take it! I will often resort to McDonald's at least 1 a week! I will bathe the kids every other night instead of every night, I rely on my mam to cook meals, I have the TV on constantly! I am short tempered and have no energy left to play as much as I would like.
I went to see a friend who also has a child with ADHD, not the same situation however he is also medicated and has to have it altered every so often. I told her how I felt and she helped me see that I was perfectly normal to hate the fact I wa giving her meds but if it helps it can be worth it. She has a lot to be proud of since her child has started medication he has come on leaps and bounds and I am glad I had someone to confide my fears in! It is so hard when you have no one to talk to. For all there are support groups, they are not for everyone. I find it very difficult to talk to strangers. I have a brick wall that I put up an cannot seem to relax enough to talk openly in these groups. I do think they are great for some people though, I don't think I have given them enough time, just feel like why would anyone want to hear your problems when they have their own going on! Stupid really as I know I am always ready to listen if someone needs a shoulder, maybe it is because it takes my mind off my own drama! Anyhow I do find writing this helps. Even if no one is reading it, just writing things down sometimes helps.
Just before Christmas and school breaks up Amira's meds were upped again! No vast improvement on sleep she seems to have stopped at 3-4 hrs now, some nights but at least 2-3 times a week goes the clock round with 0mins sleep at all!
Amira is loving school still even if she does fight every morning before she gets on the bus and fights every night getting out of it! The amount of cards, angels and artwork that came home at the end of term had me in tears! They were so special it was really touching. On the Saturday after school finished I recieved a copy of the letter sent to council from school with all the assessment findings. Amira is doing well and the school have offered her a full time place! At a cost of £56k+ per annum!!!! I know how expensive however I personally find it is worth it! Amira has started to come along and has settled into the school, she now trusts the teachers and she loves Sandra her 1:1. It spoke of Amira being behind even for an Autstic Child of her age and her communication skills are extremely weak. It did mention they have concerns of Long Term Mental Health Issues! I know these assessments are never easy to read but I admit reading through this one particularly hurt. In fact if I'm honest it killed me a little inside! The next question is if the council will agree to keep her at the school and pay the rates or will pull her out and upheave her again! God I don't think I could cope with that I will be honest!
Well Christmas is coming and the school and I are doing everything we can to prepare Amira for the break in routine and the whole Santa coming part!!
The day we put the tree up, Amira thought she would e getting presents the next day! She absolutely loved decorating the tree and we did it together with Tariq! First thing that has kept her interest in a while. Not even a fight, it was really nice.
Unfortunately Amira & Tariq were both ill over Christmas and on the day of the big man coming Amira slept! Yep, slept all day! You may all think Woo Hoo break for mammy but I would rather have her bouncing of every wall than sick! She was running a temp and never spoke more than 5 words in 4 days! She refused to look at presents and simply wasn't interested in anything! Occasionally she would have my phone to watch YouTube! Her favourite thing to do and that was it! Boxing Day had all the family visiting, I felt awful that she wouldn't say Thank you for her gift or even come down stairs to see them. She did eventually venture downstairs but sat in the office and refused to even look at her gifts! It seemed very ungrateful, luckily my family all understand. Still makes you feel bad though! Amira never slept last night at all and at 4am decided she wanted spaghetti and sauce (spaghetti bol to you and me!) she is on the mend! I had a terrible thought flash across my mind for a split second though last night and I admit it is not the first time I have thought it how different life would be if Amira wasn't around! My life would be different but I can honestly say I would not want to be around either. I love her with every peice of my heart! I may have no patience left for other people but I hope in the future with the help of medication things will improve! Specialists and friends have spoken to me about respite, but I can honestly say I am not in a place that I could allow thy to happen! I cannot let her out of my sight! I trust her school and can relax when she is there but I couldn't allow another family or unit to take her. I know every day she gets stronger and her temper can get harder to control but in time hopefully she will learn to communicate and the temper will fade or at least dampen! It hurts me to think there may be a day when I cannot care for her and will do everything in my power to make sure that day never comes. I fear that day, everyday, every hour, every min it is in the back of my head. This is no way to live, I know! In time I hope I will think about it less as I see her develop further with the help if her school.
As for me well my skin is worse than ever, think the stress is taking its toll on me, I have gained even more weight as the only way I stay awake is by the drug SUGAR!!! You have to laugh but in time when Amira starts sleeping I will hopefully start to work on getting me better! Just before Christmas I learnt that I have abnormal cells again in my last check up! This makes about the 6th time! Will be back at the beginning of the new year and get them removed again!! Ouch!! I will be asking this time though if they will consider me for a hysterectomy! Funny I always wanted huge family, now I have more than I can cope with and only have 2! I lost a few friends this year, this hurt me more than anything else. Mainly I think it was due to the fact I couldn't be there for them like they wanted me too! I have had a very busy year and to me I have to put my children first. In previous years I have done everything for everyone and this year, I literally have scaled right back to just having enough energy & patience for my own kids and dramas! Some "friends" have trouble dealing with the fact I cannot drop everything and be there when they want me! I am afraid that is just tough! If the roles were reversed I would hope I would understand and be there as a support! This is too much to ask of some people, and to them I wish them the best and have no ill will, but will always put my children's needs in front of any other! Call me selfish but that is just the way I have to operate now! It has however hurt me a lot to think that people can be so cold of feeling to not understand that. I need to toughen up and I am starting to bit by bit!
Hope you have all had a great Christmas and wish you all the best for 2013! A new year and a new start! Fingers crossed everyone that the council will keep Amira in her school, I will be finished creating Amira's Sensory room/Bedroom! this has cost a fortune and i have no guarantee that it will work but we have found out that Amira is very sensory driven and if this even helps calm her down when she has a meltdown it will be worth it! if she doesn't like it I will just have to use the room as a relaxation place for me! lol! I know a few friends have asked if they can have a try when it is finished! I think it is worth a try!
I hope this blog finds you all well and would love to hear any feedback anyone has!
ps we still don't go out of the house very often, I am still looking for any autistic friendly things to do if anyone has any ideas!
Thursday, 1 November 2012
Tuesday, 16 October 2012
Never plain sailing!
Well, it's never as easy as you think! After the last update of being told Amira got into Percy Hedley, we were told that after her 1 hr assessment with the school that she would need 1.5:1 support ratio! (meaning Amira need 1 and 1/2 people to her 1!) The council decided they wouldn't fund this and we had to go to another panel meeting!
This went back and forwards for a few weeks and resulted in me threatening legal proceedings! It eventually took Judith from Parent Partnership telling them she would call every 15 mins until we got a response and me practically tying up their phone lines for a few days to get an answer! We were finally told ok, only to then be let down again the following Monday to be told no! This pushed me over the edge and I ranted to the head of Special Educational Needs, Educational Welfare and Nick Brown MP and told them all that if Amira wasn't in school by next Monday they would not only have my solicitor to deal with but they would also be taken to the European courts with every press office and media contact I could get a hold of asking about how they had neglected my child and discriminated against her because she has special needs! I also told them that I would make sure I got press attention as I would stand on top of the Tyne Bridge with a sign for all to see, saying 'Educate my child!' Funny enough Amira was in school by Monday! With full funding!!! I don't normally advocate threats, but I had been pushed too far this time! The elation and joy I felt that Amira had finally got into a school was something I had been so desperate for, for such a long time! To have it taken away twice after I had already taken her to the school! She had met everyone and was looking forward to it was just too much for me to take! These were possibly some of the worst days I have ever had. The disappointment was engulfing to the point of physical exhaustion! I was already contending with no sleep! Adding this pressure to it was just like adding salt on an open wound! I was physically ill at the thought of explaining to Amira that I still didn't have a school for her to go to, and mammy still had not found any new friends for her to play with. (something she now cries every night for!) The whole journey of diagnosis to statementing is an extremely guilt ridden process for a parent! Why didn't I spot it sooner, why did I not realize, how can I not even get my child into a school, and my favorite that haunts me constantly is how come I cannot get Amira to sleep! That is parenting basics right? I am still questioned constantly about Amira's "sleep hygiene" in all honesty that has all gone out of the window! She doesn't sleep end of! If I had Amiras energy I would be a size 0 and able to fly to the moon and back by simply flapping my arms! The drugs don't work and I will not put her on Diazepam as it is highly addictive and can cause hallucinations! Amira already sees ghosts and monsters imagine if she was on a drug induced hallucination and she started seeing them! That would be terrifying for an adult never mind a 5 yr old! I am currently looking into a therapy/floatation beds that retail at £5k inc delivery from the States!! May have to wait for one of those! I have heard some fantastic reviews on these from you guys on here and can see the logic in them as Amira will rest in a car with me and loves swings she enters a very calm mood when on them! However, to do the recommendations I have been given (creating her bedroom into a sensory room) will cost thousands! No way can I afford this! I have however got my dad on the case and he is looking to see if he could make something similar! It has to be worth a try!....Maybe??
So, Amira started school last Monday and was picked up on Monday morning by her teacher Sandra, she had a fantastic day and has had a room made for her that is just for her. Amira will not be in a class yet for a few months as she needs to adjust to school life and get rid of the school phobia that had been created by her previous school! When she came back she walked straight past me lay down and slept for an hour and a half!!! She was exhausted! When she woke up she sobbed that she wanted to go back to school and wanted Sandra and Tony (the bus driver) to come and get her now! It took a few hours to calm her down and finally she relaxed but would not go back to sleep! Since then it has been alternate days that she will sleep for a few hours usually from 6:30am - 8:30am! I am hoping that in time with routine she will start to sleep! In fact I'm not hoping I'm praying! I am slowly coming to the realization that Amira is in a Special Needs School, of course this is not an easy adjustment for a parent, also that she will not be going back to mainstream in the near future. I am also learning not to try and plan the future too much! I am still in desperate need for sleep and I still cry at what is to come! However, instead of crying at every opportunity it is getting less and less. I now worry how/if I can get any equipment needed and have spoken to different friends and charities to see how I can get help to get these expensive items if Amira needs them! (I am waiting for the school to complete the sensory assessments and see what is needed). I have also been approached by various people asking me to pay £££ to get them to do different assessments! Some are genuine, I have been advised to avoid others. I am waiting for the school to complete all of theirs first and then will look into it further. I think when you are as sleep deprived as I am, then it is easy to look for any resource that you think may help! Usually it is a desperate reach for the unobtainable. What if I was to spend this money and they didn't work?!!?
Mostly, I am so so proud of Amira! She has been to school everyday and has completed some fantastic work and considering she has never accessed any of the curriculum up til now she knows all her of letters, numbers and colours and she is also speaking is sentences now! I know this all seems like the basics and most of you with children will expect it to be a natural progression to this! It has not been an easy step for Amira! She had already learnt all this at age 2yrs and "forgot" a lot of it and is now re doing it all again. She is coping extremely well with being back in a school environment even if she isn't eating at school she will soon adjust! Proud doesn't really sum it all up! On her first day I felt a swelling pride in my heart. I didn't cry I just stood in amazement and waved her off as she said "you wait here mammy!" I was shocked, pleased and a little over come with emotion as I thought this day would never come. As they drove away I waved and walked back in the house to find my mam crying her eyes out! I kept it together, just anxious all day. I was outside waiting for her to come home by 2:15pm and she didn't finish until 3pm! Amira is picked up from home at 9:30 and is brought back again by 3pm so I can still take Tariq and pick him up! This won't last and I'm not sure how it will work as I cannot be in two places at once! The school is absolutely fantastic though and are even going to take Amira swimming once a week as they have their own swimming and hydro pool at school!! (I can only say good luck to them!!!) The bus Amira got last week was a new one that was donated in memory of my neighbours, daughter in laws, brother! Small world! Unfortunately the bus she is in this week is a rickety old rust bucket but it still does the job and gets her from A-B! For the first week her transport was temporary and that's why we have had to change over to this old bus! The school are a God send and nothing is a problem! They tell me everyday of Amira's good points and the good work and progress she is making! I am so pleased she is in this school I just hope we get to stay here! We have been told it is only a temporary assignment until Christmas and it will be reviewed then! If they do remove her or try to I will fight every step of the way to get her to stay as she is really making progress and it is immediately evident to me and my family! I am hoping when I get Amira sorted to use my skills as an events co-ordinator to arrange a charity masquerade ball or something for the school and help them raise funds! Maybe for a new bus or whatever they see fit that will help all the children.
I am not giving up, I will always fight for what is right and hopefully will never let my daughter down! I am spread pretty thin at the min that is why I stepped down from work. I do miss it and that is probably why I am looking to arrange a ball of some sort! I suppose there is just some of us out there that couldn't sit still no matter how hard we try! You would think I would take this time to sleep, for some reason I really cannot sleep though the day!! God how I wish I could! I have no doubt in time we will get there! There are only a handful of people I have spoken to that have a sensory room at home for their child and they usually have similar traits to Amira! No sleep!!! It helps keep them calm throughout the night and although they are not asleep they are resting! As we know when Amira has a good night it leads to a great day at school, it is probably clutching at straws but I will move heaven and earth to get what she needs. I will in time get what she needs! I have spoken to a local toy library that are going to loan me some sensory light toys for a few weeks and bit by bit I will get a collection of things to create a room. If any of you know of anyone that has any old sensory toys/lights or equipment that is no longer wanted or needed then I would very much appreciate them, I will put them to good use. I do not believe in single person charities as I think raising funds for a collective group is much better and I am not asking anyone for money or funds, but ideas and suggestions are free and would be a great help to me as I have exhausted my brain for now!
This went back and forwards for a few weeks and resulted in me threatening legal proceedings! It eventually took Judith from Parent Partnership telling them she would call every 15 mins until we got a response and me practically tying up their phone lines for a few days to get an answer! We were finally told ok, only to then be let down again the following Monday to be told no! This pushed me over the edge and I ranted to the head of Special Educational Needs, Educational Welfare and Nick Brown MP and told them all that if Amira wasn't in school by next Monday they would not only have my solicitor to deal with but they would also be taken to the European courts with every press office and media contact I could get a hold of asking about how they had neglected my child and discriminated against her because she has special needs! I also told them that I would make sure I got press attention as I would stand on top of the Tyne Bridge with a sign for all to see, saying 'Educate my child!' Funny enough Amira was in school by Monday! With full funding!!! I don't normally advocate threats, but I had been pushed too far this time! The elation and joy I felt that Amira had finally got into a school was something I had been so desperate for, for such a long time! To have it taken away twice after I had already taken her to the school! She had met everyone and was looking forward to it was just too much for me to take! These were possibly some of the worst days I have ever had. The disappointment was engulfing to the point of physical exhaustion! I was already contending with no sleep! Adding this pressure to it was just like adding salt on an open wound! I was physically ill at the thought of explaining to Amira that I still didn't have a school for her to go to, and mammy still had not found any new friends for her to play with. (something she now cries every night for!) The whole journey of diagnosis to statementing is an extremely guilt ridden process for a parent! Why didn't I spot it sooner, why did I not realize, how can I not even get my child into a school, and my favorite that haunts me constantly is how come I cannot get Amira to sleep! That is parenting basics right? I am still questioned constantly about Amira's "sleep hygiene" in all honesty that has all gone out of the window! She doesn't sleep end of! If I had Amiras energy I would be a size 0 and able to fly to the moon and back by simply flapping my arms! The drugs don't work and I will not put her on Diazepam as it is highly addictive and can cause hallucinations! Amira already sees ghosts and monsters imagine if she was on a drug induced hallucination and she started seeing them! That would be terrifying for an adult never mind a 5 yr old! I am currently looking into a therapy/floatation beds that retail at £5k inc delivery from the States!! May have to wait for one of those! I have heard some fantastic reviews on these from you guys on here and can see the logic in them as Amira will rest in a car with me and loves swings she enters a very calm mood when on them! However, to do the recommendations I have been given (creating her bedroom into a sensory room) will cost thousands! No way can I afford this! I have however got my dad on the case and he is looking to see if he could make something similar! It has to be worth a try!....Maybe??
Mostly, I am so so proud of Amira! She has been to school everyday and has completed some fantastic work and considering she has never accessed any of the curriculum up til now she knows all her of letters, numbers and colours and she is also speaking is sentences now! I know this all seems like the basics and most of you with children will expect it to be a natural progression to this! It has not been an easy step for Amira! She had already learnt all this at age 2yrs and "forgot" a lot of it and is now re doing it all again. She is coping extremely well with being back in a school environment even if she isn't eating at school she will soon adjust! Proud doesn't really sum it all up! On her first day I felt a swelling pride in my heart. I didn't cry I just stood in amazement and waved her off as she said "you wait here mammy!" I was shocked, pleased and a little over come with emotion as I thought this day would never come. As they drove away I waved and walked back in the house to find my mam crying her eyes out! I kept it together, just anxious all day. I was outside waiting for her to come home by 2:15pm and she didn't finish until 3pm! Amira is picked up from home at 9:30 and is brought back again by 3pm so I can still take Tariq and pick him up! This won't last and I'm not sure how it will work as I cannot be in two places at once! The school is absolutely fantastic though and are even going to take Amira swimming once a week as they have their own swimming and hydro pool at school!! (I can only say good luck to them!!!) The bus Amira got last week was a new one that was donated in memory of my neighbours, daughter in laws, brother! Small world! Unfortunately the bus she is in this week is a rickety old rust bucket but it still does the job and gets her from A-B! For the first week her transport was temporary and that's why we have had to change over to this old bus! The school are a God send and nothing is a problem! They tell me everyday of Amira's good points and the good work and progress she is making! I am so pleased she is in this school I just hope we get to stay here! We have been told it is only a temporary assignment until Christmas and it will be reviewed then! If they do remove her or try to I will fight every step of the way to get her to stay as she is really making progress and it is immediately evident to me and my family! I am hoping when I get Amira sorted to use my skills as an events co-ordinator to arrange a charity masquerade ball or something for the school and help them raise funds! Maybe for a new bus or whatever they see fit that will help all the children.
I am not giving up, I will always fight for what is right and hopefully will never let my daughter down! I am spread pretty thin at the min that is why I stepped down from work. I do miss it and that is probably why I am looking to arrange a ball of some sort! I suppose there is just some of us out there that couldn't sit still no matter how hard we try! You would think I would take this time to sleep, for some reason I really cannot sleep though the day!! God how I wish I could! I have no doubt in time we will get there! There are only a handful of people I have spoken to that have a sensory room at home for their child and they usually have similar traits to Amira! No sleep!!! It helps keep them calm throughout the night and although they are not asleep they are resting! As we know when Amira has a good night it leads to a great day at school, it is probably clutching at straws but I will move heaven and earth to get what she needs. I will in time get what she needs! I have spoken to a local toy library that are going to loan me some sensory light toys for a few weeks and bit by bit I will get a collection of things to create a room. If any of you know of anyone that has any old sensory toys/lights or equipment that is no longer wanted or needed then I would very much appreciate them, I will put them to good use. I do not believe in single person charities as I think raising funds for a collective group is much better and I am not asking anyone for money or funds, but ideas and suggestions are free and would be a great help to me as I have exhausted my brain for now!
Friday, 14 September 2012
With a little help from my friends!!
How do you get council to listen to you? Simple! You tell your sister and your friends!!
Wow! My sister and friends could move mountains! They are certainly not the people I would ever like to get on the wrong side of!! They all work for a telecommunication company and at one point I thought they might have cut the councils phone and internet service off until they agreed! Lol! Instead, they blogged, Tweeted, Facebooked, emailed, called, texted and knocked on almost every door of every MP, Councillor, solicitor, newspaper, radio station, TV programme, council complaints department and charity that they could think of to help long into the night! By this morning I had the Local Government Ombudsman on the phone asking if I wished to make a formal complaint and how could they help, I had a solicitor asking if they could take on the case, I had numerous charities volunteering contacts and support. I was inundated!!
I tried ringing the council over and over again but no-one was taking my call. Until, Parent Partnership rang the council, I had been told they were not in yet, they however had the diary to say otherwise! I was told by them to call back every hour on the hour until they spoke to me, I was calling the council every 15mins!!!
Finally, I recieved a call from the council this afternoon, during that 6min call I was apologised to 5 times!!! I informed him that not only was Thomas Bewick full (as he confirmed) but also all of the neighbouring boroughs (North Tyneside) special schools were too! So, I asked him when my preference would be considered? I was told that he thought I had been through enough and asked me to fill out the paperwork that is now on its way and he would speak to his head of department to clear it with him to send Amira to Percy Hedley! I was to be called back in the afternoon! I wasn't going to let myself believe it just yet! But, true to his word he called me back late this afternoon and confirmed a place for Amira at Percy Hedley school!! I was so happy I cried! I still cannot believe it! I now just have to wait for the school to contact me to arrange a start date and she will go for a weeks assessment first then straight into school!
I am under no illusion that it is going to be plain sailing from here, it is going to be tough and there are a lot more fights ahead of me! But, with the support of my family and friends I will be more than ready for them!
I would like to take this opportunity to thank every one of you for reading this blog and showing that you care for my daughter. My intention here was never to hurt, upset or gain anyone's sympathy or pity! I needed a release for my thoughts and support for my child; I will carry on updating this regularly with the first days of school and any other things that come up relating to Amira and the hurdles we face together! I would love for you all to carry on reading!
To all of those parents/guardians who are reading and have asked me for help and support I will always be here. I am planning on writing a flow chart showing who to call, where to go, whose cage you need to rattle etc, to go from suspecting your child may be autistic to diagnosis through the statementing process and accessing help and support. Please let me know if anyone thinks this will be useful as I wish I had something like that before this all started!
Thanks again and a special mention goes out to my mam and dad who have kept me not only financially but emotionally and helped with the sleepless nights, spotting when I couldn't take anymore and taking over! I would have been admitted to a funny farm by now if it wasn't for them. They have taken me back into their house and not only extended it for more room for us and watched Amira & Tariq damage and break things in their house they have worked hard for years to get, but also taken on more than any grandparent would be expected to deal with. They are supposed to be relaxing and enjoying their quiet time now and see their grand kids a few days a week, being glad to hand them back over! I see how exhausted they are and they never complain or fuss! Even when Amira splatters paint all up their walls and pulls down curtain rails and kicks doors off hinges! My parents are one in a million and I couldn't survive without them!
Next my sister, as you have read on here Andrea doesn't think she does enough, but she does more than any sister would do. She is the only other person that Amira will go out with. She picks up both my kids with short notice, she cheers me up when I'm down. She writes very powerful emails and will stand and fight by my side. I have no doubt that she will always have my back, front and both sides. She takes me out to get away for a bit, gives me a reality check when needed, loves my kids like they are her own and her and Amira idolize each other! Andrea encourages me to take Amira out anywhere and to hell with anyone who has an opinion about it. For all people think I am the bolshy one in the family, they have never pushed my sister the wrong way! She is my rock and I not only love her but I couldn't be without her.
To Mel, Kirstin, Lisa & Lisa, thank you all for keeping me sane, keeping me grounded, listening to me prattling on about Amira and how hard it is! Listening to me harping on about what a prat the kids father is. For offering me a sofa to kip on when we visit for a pizza night!! For standing by my side and taking up the fight with me and for caring for me and my kids. I know it started that you were all Andrea's friends and she took pity on me and brought me with her on your night out! However, now I feel like we are friends in our own right too and would trust anyone of you and have done with some very deep secrets and feelings. For all this and more I thank you so much.
There are so many more of you I would like to thank! My cousin Nichola who listens to my whinging and brings her kids over to keep my two entertained and give me a break! Always offering to take the kids to give me a break! My other cousin Angie who is always telling me of the latest music/medical/holistic therapy and the charities that can help. Pathways4all that have a fantastic support group and a safe inclusive play area for Amira and Tariq to play without judgement.
If it wasn't for these people individually and together I admit I may have done something stupid by now. Amira, Tariq and I have been through an awful time and life has been hard at times. It has of course not been without its fantastic times but there have been some incredibly dark times too! This journey has pushed me to the edge and beyond on many occasions and without the people listed above and quite a few others I would not be here to tell you all about it now. I don't think anyone other than those who have made this journey can describe how gut wrenching it can be. I have so many more hurdles to over come as time goes on but for now we are on the right path.
For all this and so much more thank you xxx
Wow! My sister and friends could move mountains! They are certainly not the people I would ever like to get on the wrong side of!! They all work for a telecommunication company and at one point I thought they might have cut the councils phone and internet service off until they agreed! Lol! Instead, they blogged, Tweeted, Facebooked, emailed, called, texted and knocked on almost every door of every MP, Councillor, solicitor, newspaper, radio station, TV programme, council complaints department and charity that they could think of to help long into the night! By this morning I had the Local Government Ombudsman on the phone asking if I wished to make a formal complaint and how could they help, I had a solicitor asking if they could take on the case, I had numerous charities volunteering contacts and support. I was inundated!!
I tried ringing the council over and over again but no-one was taking my call. Until, Parent Partnership rang the council, I had been told they were not in yet, they however had the diary to say otherwise! I was told by them to call back every hour on the hour until they spoke to me, I was calling the council every 15mins!!!
Finally, I recieved a call from the council this afternoon, during that 6min call I was apologised to 5 times!!! I informed him that not only was Thomas Bewick full (as he confirmed) but also all of the neighbouring boroughs (North Tyneside) special schools were too! So, I asked him when my preference would be considered? I was told that he thought I had been through enough and asked me to fill out the paperwork that is now on its way and he would speak to his head of department to clear it with him to send Amira to Percy Hedley! I was to be called back in the afternoon! I wasn't going to let myself believe it just yet! But, true to his word he called me back late this afternoon and confirmed a place for Amira at Percy Hedley school!! I was so happy I cried! I still cannot believe it! I now just have to wait for the school to contact me to arrange a start date and she will go for a weeks assessment first then straight into school!
I am under no illusion that it is going to be plain sailing from here, it is going to be tough and there are a lot more fights ahead of me! But, with the support of my family and friends I will be more than ready for them!
I would like to take this opportunity to thank every one of you for reading this blog and showing that you care for my daughter. My intention here was never to hurt, upset or gain anyone's sympathy or pity! I needed a release for my thoughts and support for my child; I will carry on updating this regularly with the first days of school and any other things that come up relating to Amira and the hurdles we face together! I would love for you all to carry on reading!
To all of those parents/guardians who are reading and have asked me for help and support I will always be here. I am planning on writing a flow chart showing who to call, where to go, whose cage you need to rattle etc, to go from suspecting your child may be autistic to diagnosis through the statementing process and accessing help and support. Please let me know if anyone thinks this will be useful as I wish I had something like that before this all started!
Thanks again and a special mention goes out to my mam and dad who have kept me not only financially but emotionally and helped with the sleepless nights, spotting when I couldn't take anymore and taking over! I would have been admitted to a funny farm by now if it wasn't for them. They have taken me back into their house and not only extended it for more room for us and watched Amira & Tariq damage and break things in their house they have worked hard for years to get, but also taken on more than any grandparent would be expected to deal with. They are supposed to be relaxing and enjoying their quiet time now and see their grand kids a few days a week, being glad to hand them back over! I see how exhausted they are and they never complain or fuss! Even when Amira splatters paint all up their walls and pulls down curtain rails and kicks doors off hinges! My parents are one in a million and I couldn't survive without them!
Next my sister, as you have read on here Andrea doesn't think she does enough, but she does more than any sister would do. She is the only other person that Amira will go out with. She picks up both my kids with short notice, she cheers me up when I'm down. She writes very powerful emails and will stand and fight by my side. I have no doubt that she will always have my back, front and both sides. She takes me out to get away for a bit, gives me a reality check when needed, loves my kids like they are her own and her and Amira idolize each other! Andrea encourages me to take Amira out anywhere and to hell with anyone who has an opinion about it. For all people think I am the bolshy one in the family, they have never pushed my sister the wrong way! She is my rock and I not only love her but I couldn't be without her.
To Mel, Kirstin, Lisa & Lisa, thank you all for keeping me sane, keeping me grounded, listening to me prattling on about Amira and how hard it is! Listening to me harping on about what a prat the kids father is. For offering me a sofa to kip on when we visit for a pizza night!! For standing by my side and taking up the fight with me and for caring for me and my kids. I know it started that you were all Andrea's friends and she took pity on me and brought me with her on your night out! However, now I feel like we are friends in our own right too and would trust anyone of you and have done with some very deep secrets and feelings. For all this and more I thank you so much.
There are so many more of you I would like to thank! My cousin Nichola who listens to my whinging and brings her kids over to keep my two entertained and give me a break! Always offering to take the kids to give me a break! My other cousin Angie who is always telling me of the latest music/medical/holistic therapy and the charities that can help. Pathways4all that have a fantastic support group and a safe inclusive play area for Amira and Tariq to play without judgement.
If it wasn't for these people individually and together I admit I may have done something stupid by now. Amira, Tariq and I have been through an awful time and life has been hard at times. It has of course not been without its fantastic times but there have been some incredibly dark times too! This journey has pushed me to the edge and beyond on many occasions and without the people listed above and quite a few others I would not be here to tell you all about it now. I don't think anyone other than those who have made this journey can describe how gut wrenching it can be. I have so many more hurdles to over come as time goes on but for now we are on the right path.
For all this and so much more thank you xxx
Thursday, 13 September 2012
Epic Fail!
Well the inclusion panel met today!
Good News: Amira has been given a statement.
That's where it ends
Bad News: they selected Thomas Bewick school! A fantastic school, however, it is on the opposite end of the city. Amira as you all know is not a good traveller. The journey would take at least 1hr & 15 mins direct from door to door. This is taking into account, either, coast road or ministry traffic of a morning! Amira is also ADHD remember sitting still is an impossibility and when stressed as she would be travelling with strangers will cause her to go into meltdown. This would result in a violent episode and will cause her to attack those around her. Amira ha snow been out of school for over 6 months and starting a new school will be hard enough without the journey beforehand.
I expressed these concerns and was told I could put my opinions into council and they will consider it and could take it to tribunal!! They recommended I at least have a look at Thomas Bewick.
I admit I sobbed, the fight wasn't over. For some reason I had thought they would give me the school and hopefully she would be in by mon!! I was even daydreaming of having a nap on mon morning!! Pathetic you may think but I am so tired! I rang the school and asked to come and view. Speaking to the lady that I was told to call. She then informed me even if I wanted Amira to go there, she couldn't! Amira's age group (year 1) is FULL!!! Yes that is right FULL!!!
I tried ringing back council to ask what now?? Left 3 messages and had no response. I will try again in the morning.
I am so deflated. My child has now been in her room for 4 days coming out only to go to the toilet and squirrel away food! She has cried for the last few mornings asking to go to school! I can tell she is lonely. Mammy is not that much fun to play with all the time!! My heart is breaking, both of my children are confused as my son is crying to stay home from school as he doesn't want to leave his sister. I only ask for what is right. An education for my child. Amira does not receive any therapy until she attends a school. She has had no help or support since being removed from her school in April!
Why my child? Why my baby Girl? What has she ever done wrong? I have offered the council to take back all of the benefits they give me for having a special needs child, asking if they have them back can she go to Percy Hedley? If it is funding take the money you give me and pay for it that way!! Apparently they can not do that. My dad tonight has offered to put their house up and buy home tutors or try and buy a place at a private school. I could not accept that, my parents have already done so much. I have already lost my home, car and now left my job too. How can I ask them to put there home in jeopardy too, although I know they would give everything they have just to see her happy!
I cried when they told me as I feel beaten, I cannot even support my own children, I rely on my parents for everything. I called my sister as soon as I dried the tears. She of course said well we will just keep fighting.
My sister and friends even when I type this are blogging, tweeting, face booking and emailing every paper, tv show, radio station and group they can think of trying to rally support! I now don't know what happens next or how long it will take, but do know this. I will not stop, I will not give in and I will never stop shouting for my daughters rights!
If you know anyone who can help or see the links anywhere on FB etc please like, share or add a comments! Help make a difference in my child's life. She really does deserve a little help! Please...
Good News: Amira has been given a statement.
That's where it ends
Bad News: they selected Thomas Bewick school! A fantastic school, however, it is on the opposite end of the city. Amira as you all know is not a good traveller. The journey would take at least 1hr & 15 mins direct from door to door. This is taking into account, either, coast road or ministry traffic of a morning! Amira is also ADHD remember sitting still is an impossibility and when stressed as she would be travelling with strangers will cause her to go into meltdown. This would result in a violent episode and will cause her to attack those around her. Amira ha snow been out of school for over 6 months and starting a new school will be hard enough without the journey beforehand.
I expressed these concerns and was told I could put my opinions into council and they will consider it and could take it to tribunal!! They recommended I at least have a look at Thomas Bewick.
I admit I sobbed, the fight wasn't over. For some reason I had thought they would give me the school and hopefully she would be in by mon!! I was even daydreaming of having a nap on mon morning!! Pathetic you may think but I am so tired! I rang the school and asked to come and view. Speaking to the lady that I was told to call. She then informed me even if I wanted Amira to go there, she couldn't! Amira's age group (year 1) is FULL!!! Yes that is right FULL!!!
I tried ringing back council to ask what now?? Left 3 messages and had no response. I will try again in the morning.
I am so deflated. My child has now been in her room for 4 days coming out only to go to the toilet and squirrel away food! She has cried for the last few mornings asking to go to school! I can tell she is lonely. Mammy is not that much fun to play with all the time!! My heart is breaking, both of my children are confused as my son is crying to stay home from school as he doesn't want to leave his sister. I only ask for what is right. An education for my child. Amira does not receive any therapy until she attends a school. She has had no help or support since being removed from her school in April!
Why my child? Why my baby Girl? What has she ever done wrong? I have offered the council to take back all of the benefits they give me for having a special needs child, asking if they have them back can she go to Percy Hedley? If it is funding take the money you give me and pay for it that way!! Apparently they can not do that. My dad tonight has offered to put their house up and buy home tutors or try and buy a place at a private school. I could not accept that, my parents have already done so much. I have already lost my home, car and now left my job too. How can I ask them to put there home in jeopardy too, although I know they would give everything they have just to see her happy!
I cried when they told me as I feel beaten, I cannot even support my own children, I rely on my parents for everything. I called my sister as soon as I dried the tears. She of course said well we will just keep fighting.
My sister and friends even when I type this are blogging, tweeting, face booking and emailing every paper, tv show, radio station and group they can think of trying to rally support! I now don't know what happens next or how long it will take, but do know this. I will not stop, I will not give in and I will never stop shouting for my daughters rights!
If you know anyone who can help or see the links anywhere on FB etc please like, share or add a comments! Help make a difference in my child's life. She really does deserve a little help! Please...
Sunday, 9 September 2012
The final frontier...... I hope!
Well, I finally received a call this week from N Council after the 4 un-returned calls over the summer holidays. They rang to tell me that the Inclusion Panel would be meeting on the 13th Sept and our case would be going through as all of the paper work had now been collected. The panel will meet first thing in the morning and they will have the decision back after lunch. He will call me after. They also said that they will give advice as well as naming a school. They apologised that Amira would not be joining any school for the start of the term but they hope to get the wheels in motion, as long as we are all in agreement about the school. I asked what happens what if I didn't agree but was told not to think about that now as they will take my views seriously and they do not like to go to appeal! God only knows, should I take that as positive or not??!!??
Well let's rewind slightly and let you catch up on other news!
Amira had her prescription changed from Melatonin (liquid) to Melatonin capsules then up to Chlorayl Hydrate (Sedative) I was very wary about moving to this it has a lot of side effects and is certainly not natural product like melatonin is, but I decided to try it, went for it and "drugged" my child to try and get some sleep! I have now tried it for over 2 weeks and can honestly say it is not for her, it has had no effect at all! I had better results with the melatonin capsules! Now back to waiting to speak to the paediatrician again to see what is next!
I have now taken a career break from work as I just couldn't physically manage anymore. I don't regret my decision but I am saddened by it. I miss my friends/colleagues, I miss the work I did and the responsibility I had, I miss organising an event and the buzz I got from the amount I raised and the smiles from the people who received the donation, I miss the contact I had with all the different members of the community, I miss adult conversations and a reason to get dressed in a morning. I may have been exhausted from it but I really did love it! However, I had to get my priorities in order and my children come first! That is why I don't regret my decision. It doesn't stop me from missing it though!
I am hoping that when Amira does finally start a school and now Tariq has started reception and is full time I will start to get my life back! I'm sure all mums have this feeling! A mixture of sadness and joy! I have just had a very extended summer holiday for Amira, 6 months and counting!!!
I am under no illusion that starting a new school is going to be extremely difficult for Amira and "breaking" her into a new routine will be frought with challenges but I am now in a stronger place to deal with them!...I hope!!!!
We have been out and about over the summer holidays and joined in with the Pathways 4 All Picnic in the Park! We all had a great day, Amira absolutely loved it! The new park was fantastic, safe and fully inclusive...absolutely perfect for us! The other parents/carers were lovely and when Amira stripped off completely to swim in a muddy puddle there were no tuts or judgements! Just acknowledgements that they had been there before! It was hilarious though when my sister was trying to catch her to get her clothes back in, Amira is very fast!!!
Well let's rewind slightly and let you catch up on other news!
Amira had her prescription changed from Melatonin (liquid) to Melatonin capsules then up to Chlorayl Hydrate (Sedative) I was very wary about moving to this it has a lot of side effects and is certainly not natural product like melatonin is, but I decided to try it, went for it and "drugged" my child to try and get some sleep! I have now tried it for over 2 weeks and can honestly say it is not for her, it has had no effect at all! I had better results with the melatonin capsules! Now back to waiting to speak to the paediatrician again to see what is next!
I have now taken a career break from work as I just couldn't physically manage anymore. I don't regret my decision but I am saddened by it. I miss my friends/colleagues, I miss the work I did and the responsibility I had, I miss organising an event and the buzz I got from the amount I raised and the smiles from the people who received the donation, I miss the contact I had with all the different members of the community, I miss adult conversations and a reason to get dressed in a morning. I may have been exhausted from it but I really did love it! However, I had to get my priorities in order and my children come first! That is why I don't regret my decision. It doesn't stop me from missing it though!
I am hoping that when Amira does finally start a school and now Tariq has started reception and is full time I will start to get my life back! I'm sure all mums have this feeling! A mixture of sadness and joy! I have just had a very extended summer holiday for Amira, 6 months and counting!!!
I am under no illusion that starting a new school is going to be extremely difficult for Amira and "breaking" her into a new routine will be frought with challenges but I am now in a stronger place to deal with them!...I hope!!!!
We have been out and about over the summer holidays and joined in with the Pathways 4 All Picnic in the Park! We all had a great day, Amira absolutely loved it! The new park was fantastic, safe and fully inclusive...absolutely perfect for us! The other parents/carers were lovely and when Amira stripped off completely to swim in a muddy puddle there were no tuts or judgements! Just acknowledgements that they had been there before! It was hilarious though when my sister was trying to catch her to get her clothes back in, Amira is very fast!!!
Friday, 10 August 2012
Baby Mine
Baby mine,
don't you cry,
Baby mine,
dry your eyes,
Rest your head,
next to my heart,
Never to part,
Baby your mine!
Never have these words had more meaning to me!
I am losing my baby, I don't know how to help her, I am so afraid that my baby girl will never lead a normal life. I am scared I am not looking after her properly and I am doing something wrong. I am frightened I am to blame. I feel so alone, I need help, is this all my fault?
I feel guilt for the times telling her off for years for things that she may not have been able to understand.
I feel guilt that maybe I haven't told her off enough for the "bad behaviour" she has displayed over the years.
I feel ashamed that people stare when she has a meltdown.
I feel shame that I should even care what other people think.
I feel remorse for the thoughts of just wanting a normal life and how different things could have been.
I feel sorrow for memories that I wished for in her future.
I feel confused with the system,
I feel bewildered at how things are meant to be.
I feel raw with the ache in my heart when I see my daughter in turmoil.
I feel crushed by the social pressure of acceptance.
I feel angry at the hoops I have to jump to get my child an education.
I feel let down by a Goverment that can see the flaws but are yet to fix them.
I feel hatred to the ignorant that tut tut at my child.
I feel violated by the jokes or punch lines at my child's expense.
I feel saddened that there is no cure.
I feel in a daze with Dr Google and all the what if's that cannot be answered!
I sit and cry every night at my daughters side, praying to God to please just do something, to send a miracle, I cry silent tears so I do not disturb anyone. Even though I am so tired I cannot sleep, I just want my baby back.
It seems at times that the girl I once knew is not there. She still shows herself every so often with a smile, a laugh, a tickle even a song or performance.
I miss you Amira please come home to mammy, I will be waiting for you.
Love you Always
Your mammy xxx
don't you cry,
Baby mine,
dry your eyes,
Rest your head,
next to my heart,
Never to part,
Baby your mine!
Never have these words had more meaning to me!
I am losing my baby, I don't know how to help her, I am so afraid that my baby girl will never lead a normal life. I am scared I am not looking after her properly and I am doing something wrong. I am frightened I am to blame. I feel so alone, I need help, is this all my fault?
I feel guilt for the times telling her off for years for things that she may not have been able to understand.
I feel guilt that maybe I haven't told her off enough for the "bad behaviour" she has displayed over the years.
I feel ashamed that people stare when she has a meltdown.
I feel shame that I should even care what other people think.
I feel remorse for the thoughts of just wanting a normal life and how different things could have been.
I feel sorrow for memories that I wished for in her future.
I feel confused with the system,
I feel bewildered at how things are meant to be.
I feel raw with the ache in my heart when I see my daughter in turmoil.
I feel crushed by the social pressure of acceptance.
I feel angry at the hoops I have to jump to get my child an education.
I feel let down by a Goverment that can see the flaws but are yet to fix them.
I feel hatred to the ignorant that tut tut at my child.
I feel violated by the jokes or punch lines at my child's expense.
I feel saddened that there is no cure.
I feel in a daze with Dr Google and all the what if's that cannot be answered!
I sit and cry every night at my daughters side, praying to God to please just do something, to send a miracle, I cry silent tears so I do not disturb anyone. Even though I am so tired I cannot sleep, I just want my baby back.
It seems at times that the girl I once knew is not there. She still shows herself every so often with a smile, a laugh, a tickle even a song or performance.
I miss you Amira please come home to mammy, I will be waiting for you.
Love you Always
Your mammy xxx
Sunday, 5 August 2012
On the road to......nowhere!
Well the 30th of July has come and gone! I rang the council to be told that there are no inclusion panel meetings during the summer holidays!! Aggrrrrhhhh!!
They said that they must have just said all paperwork was to be in by that date! (they didn't!) However, they are still waiting for 1 report and that is for a paediatrician from the hospital! They haven't met Amira yet the appt is booked for the 7th Aug! Apparently they "make exceptions for medical appts to be late!" Of course they do!" The council will have a full meeting in September and hopefully have Amira in a school in the first half term of autumn but she is sure that it should be before Christmas!!!!
I was flabbergasted! It is bad enough that they are making their judgement based on reports from people who have spent just minutes not even hours with Amira! The Educational Psychologist came to the house and met her for all of 3mins, she ran out of the room and he continued the rest of the conversation with me! He was a complete waste of space, he had tried contacting the school before he rang me wanting to go and see her there!!! That should of told me something! Instead, when he got here he asked me "why I kept excusing Amira's behavior with Autism & ADHD! How did I know?" I was a bit taken a back! I explained that she was diagnosed in April and I was still unsure what parts were her autism/ADHD and what was just testing boundaries? He asked if I was sure she was diagnosed as he had no record of it! For a split second I thought maybe I hadn't had it and it, was it all a bad dream? No, of course I knew the truth, no matter how I wished, prayed and pinched myself to wake up, I had the diagnosis. I will never forget that day. I still remember exactly how it feels and can cry on cue just thinking of it!
This guy was a joke! I fought my corner and confirmed the date and time I was told Amira was diagnosed. He just said he didn't have that information! I told him that I thought that it was a pretty vital bit of information to have before you come out and see her. He then told me that he couldn't give a full report as he has only met her for a few mins it will be a a very basic one!! I asked about the Ed Psyc that Amira seen from the other Council! He said that the previous report was not adequate!??!! I asked how when she had met Amira several times in school surrounded by her peers and alone! He said the report wasn't in-depth enough! I responded surely it would be more in depth than his would be though!
As soon as he left I started the calls again! Speaking to Parent Partnership (Judith) I confirmed that CAHMS had sent the full report to the head SEN at the council on the 26th of June weeks before his appt with me. She rang and spoke to the council and they apologised to her they did have the report he just hadn't read it!!! Inexcusable!
Looks like I am back to that brick wall again!!
Next to come is the appointment on 7th August with another new doctor who doesn't know Amira and never even met her before! How are they able to make a report on her that is to dictate where Amira will be schooled until she is 19!!!! This system is pathetic! The council have proved to me that they do not care about my child but are of course happy to take my money for their council tax! My parents, both sets of grandparents and theirs before them have lived in Newcastle all their lives and paid into their pot! None ever claiming a benefit and here I stand asking for my child to be educated and she is being denied her legal right to education and care! Why? Because she is Autistic/ADHD!
I am now truly feeling the effects of sleep deprivation, I am a walking zombie and emotional wreck! I have stepped down from work and been put on the sick from the GP. I have been warned that the heart palpitations and chest pains that lead me to be rushed to hospital a few weeks ago by ambulance was a warning and next time I could be looking at a heart attack if I don't start to take it easy! Burning the candle at both ends and something has to give! Although I love my job I love my kids more and I am having to prioritize at the moment and I chose my kids! Within 3 days of being off my work has arranged for me to see a councillor!! At first I was annoyed however I know they are doing it for my own best interest. In all companies we are all just another number however with my job I have some great people I work with who genuinely do care. I spoke to one of the managers who after I explained the whole deal he said he never realized how bad things were. I suppose I don't really tell a lot of people how I really feel and let everything get on top of me until I finally blow! Explains my skin I suppose. I am still debating what to do, considering giving up work all together. Do I then lose all contact with the adult world and would I then start living even more like a hermit! Or do I continue on and hope that one day it will get easier? When both kids finally do start school full time as surely at some point they must! What would I do with my time?? Other than sleep, I could really do with that.
I see day by day how Amira seems to be deteriorating and withdrawing more from conventional life! It is killing me! I seem to cry on a daily basis, the type of tears where I end up in a puddle on the floor sobbing why my baby girl, just give her back to me, please God, why her, I swear on my life I will do whatever he wants, he can take my life if he will spare her from a life like this!
Some days I have hope that when Amira is in a special needs school she will get the help she needs and will be able to function in everyday life. I hear stories of other autistic children who are very sucessful in their adult life, Others I fear the worse and worry that everyday will be like today and when I die she will be in some god awful home and be alone. I cannot think of anything worse.
Today Amira flooded the house by turning the taps on in the bathroom and stood laughing as she watched them overflowing! A few days ago she stabbed Tariq just under his eye with a knife and made a small mark. I loose count of the times I get bit, scratched or punched and the new one spitting!! I am at a loss to know what behavior is autism/ADHD and what is just naughtiness I now just tell her off constantly as no one has told me the best way to deal!
I still don't fully understand all about autism/ADHD and am learning as I go via books and Internet. There is no one to tell you what to expect and how to deal, no one to teach you what behavior is usual! There is no help, you get your diagnosis and they leave you to it! How are parents supposed to know, as if parenting alone isn't hard enough. Throw a few special needs in the mix and boom what you thought was the right way to discipline your child, just doesn't work!
Ok focusing on the positive, Amira is happy, she only occasionally asks to go to school and to have friends, like other children she wants everything she sees on the tv, she painted a beautiful egg at the ceramic experience the other week, when we went to the inclusion day at the Gateshead Stadium she loves the trampoline and seeing all the other children she even spun plates and played on the drums. She may not have played with others but she did play along side them with no trouble. Today we went to The Bear Factory and Amira absolutely loves it, she chose a pink bear that she helped stuff, put the heart in and made a wish on it, she then combed the bears fur and picked out clothes for it too, she kept going back and forward to the little mirrors and smiling and talking to the bear (pinky) asking if it liked it's outfit and cuddling so tightly! She never ran away once and was a good girl in the store. I of course loved every second of her smiling even if it did prove difficult, mam in the wheelchair and Tariq on one hand and Amira on the other! It was easier to have my mum there in case I had to run after Amira she could stand with Tariq. Harder to run and catch her when you are carrying Tariq too!
I have been told several times I should get in touch with social services and look into respite care. Let me just state this here and now. I do NOT want it! I know these people are very good and I know they do a fantastic job. However, my daughter will not be leaving my sight to be looked after by a stranger while there is a breath left in me! I will simply not allow it! I know some people think I am daft but there is no way. In some ways I look at that as the ultimate failure for me as a mum? I cannot even take care of my own child. I on the other hand would be fully supportive if another mum or family were considering it, just isn't for us!
I have started looking for classes for Amira to go to, dance, singing, trampolining etc! Not quite sure where to look. Not like I can just put her in the "normal" class! What if they have the same reaction as the mothers at the school did?? Any ideas or recommendations appreciated.
They said that they must have just said all paperwork was to be in by that date! (they didn't!) However, they are still waiting for 1 report and that is for a paediatrician from the hospital! They haven't met Amira yet the appt is booked for the 7th Aug! Apparently they "make exceptions for medical appts to be late!" Of course they do!" The council will have a full meeting in September and hopefully have Amira in a school in the first half term of autumn but she is sure that it should be before Christmas!!!!
I was flabbergasted! It is bad enough that they are making their judgement based on reports from people who have spent just minutes not even hours with Amira! The Educational Psychologist came to the house and met her for all of 3mins, she ran out of the room and he continued the rest of the conversation with me! He was a complete waste of space, he had tried contacting the school before he rang me wanting to go and see her there!!! That should of told me something! Instead, when he got here he asked me "why I kept excusing Amira's behavior with Autism & ADHD! How did I know?" I was a bit taken a back! I explained that she was diagnosed in April and I was still unsure what parts were her autism/ADHD and what was just testing boundaries? He asked if I was sure she was diagnosed as he had no record of it! For a split second I thought maybe I hadn't had it and it, was it all a bad dream? No, of course I knew the truth, no matter how I wished, prayed and pinched myself to wake up, I had the diagnosis. I will never forget that day. I still remember exactly how it feels and can cry on cue just thinking of it!
This guy was a joke! I fought my corner and confirmed the date and time I was told Amira was diagnosed. He just said he didn't have that information! I told him that I thought that it was a pretty vital bit of information to have before you come out and see her. He then told me that he couldn't give a full report as he has only met her for a few mins it will be a a very basic one!! I asked about the Ed Psyc that Amira seen from the other Council! He said that the previous report was not adequate!??!! I asked how when she had met Amira several times in school surrounded by her peers and alone! He said the report wasn't in-depth enough! I responded surely it would be more in depth than his would be though!
As soon as he left I started the calls again! Speaking to Parent Partnership (Judith) I confirmed that CAHMS had sent the full report to the head SEN at the council on the 26th of June weeks before his appt with me. She rang and spoke to the council and they apologised to her they did have the report he just hadn't read it!!! Inexcusable!
Looks like I am back to that brick wall again!!
Next to come is the appointment on 7th August with another new doctor who doesn't know Amira and never even met her before! How are they able to make a report on her that is to dictate where Amira will be schooled until she is 19!!!! This system is pathetic! The council have proved to me that they do not care about my child but are of course happy to take my money for their council tax! My parents, both sets of grandparents and theirs before them have lived in Newcastle all their lives and paid into their pot! None ever claiming a benefit and here I stand asking for my child to be educated and she is being denied her legal right to education and care! Why? Because she is Autistic/ADHD!
I am now truly feeling the effects of sleep deprivation, I am a walking zombie and emotional wreck! I have stepped down from work and been put on the sick from the GP. I have been warned that the heart palpitations and chest pains that lead me to be rushed to hospital a few weeks ago by ambulance was a warning and next time I could be looking at a heart attack if I don't start to take it easy! Burning the candle at both ends and something has to give! Although I love my job I love my kids more and I am having to prioritize at the moment and I chose my kids! Within 3 days of being off my work has arranged for me to see a councillor!! At first I was annoyed however I know they are doing it for my own best interest. In all companies we are all just another number however with my job I have some great people I work with who genuinely do care. I spoke to one of the managers who after I explained the whole deal he said he never realized how bad things were. I suppose I don't really tell a lot of people how I really feel and let everything get on top of me until I finally blow! Explains my skin I suppose. I am still debating what to do, considering giving up work all together. Do I then lose all contact with the adult world and would I then start living even more like a hermit! Or do I continue on and hope that one day it will get easier? When both kids finally do start school full time as surely at some point they must! What would I do with my time?? Other than sleep, I could really do with that.
I see day by day how Amira seems to be deteriorating and withdrawing more from conventional life! It is killing me! I seem to cry on a daily basis, the type of tears where I end up in a puddle on the floor sobbing why my baby girl, just give her back to me, please God, why her, I swear on my life I will do whatever he wants, he can take my life if he will spare her from a life like this!
Some days I have hope that when Amira is in a special needs school she will get the help she needs and will be able to function in everyday life. I hear stories of other autistic children who are very sucessful in their adult life, Others I fear the worse and worry that everyday will be like today and when I die she will be in some god awful home and be alone. I cannot think of anything worse.
Today Amira flooded the house by turning the taps on in the bathroom and stood laughing as she watched them overflowing! A few days ago she stabbed Tariq just under his eye with a knife and made a small mark. I loose count of the times I get bit, scratched or punched and the new one spitting!! I am at a loss to know what behavior is autism/ADHD and what is just naughtiness I now just tell her off constantly as no one has told me the best way to deal!
I still don't fully understand all about autism/ADHD and am learning as I go via books and Internet. There is no one to tell you what to expect and how to deal, no one to teach you what behavior is usual! There is no help, you get your diagnosis and they leave you to it! How are parents supposed to know, as if parenting alone isn't hard enough. Throw a few special needs in the mix and boom what you thought was the right way to discipline your child, just doesn't work!
Ok focusing on the positive, Amira is happy, she only occasionally asks to go to school and to have friends, like other children she wants everything she sees on the tv, she painted a beautiful egg at the ceramic experience the other week, when we went to the inclusion day at the Gateshead Stadium she loves the trampoline and seeing all the other children she even spun plates and played on the drums. She may not have played with others but she did play along side them with no trouble. Today we went to The Bear Factory and Amira absolutely loves it, she chose a pink bear that she helped stuff, put the heart in and made a wish on it, she then combed the bears fur and picked out clothes for it too, she kept going back and forward to the little mirrors and smiling and talking to the bear (pinky) asking if it liked it's outfit and cuddling so tightly! She never ran away once and was a good girl in the store. I of course loved every second of her smiling even if it did prove difficult, mam in the wheelchair and Tariq on one hand and Amira on the other! It was easier to have my mum there in case I had to run after Amira she could stand with Tariq. Harder to run and catch her when you are carrying Tariq too!
I have been told several times I should get in touch with social services and look into respite care. Let me just state this here and now. I do NOT want it! I know these people are very good and I know they do a fantastic job. However, my daughter will not be leaving my sight to be looked after by a stranger while there is a breath left in me! I will simply not allow it! I know some people think I am daft but there is no way. In some ways I look at that as the ultimate failure for me as a mum? I cannot even take care of my own child. I on the other hand would be fully supportive if another mum or family were considering it, just isn't for us!
I have started looking for classes for Amira to go to, dance, singing, trampolining etc! Not quite sure where to look. Not like I can just put her in the "normal" class! What if they have the same reaction as the mothers at the school did?? Any ideas or recommendations appreciated.
Thursday, 19 July 2012
My ten pence worth...
Bev has asked me to write a post about how I feel about the whole situation, to see a different perspective. (she actually asked me a few weeks ago, but I am not as good at writing what I feel as she is and I have started and deleted this about 8 times already!)
I am Bev's sister . I am Amira's auntie.
In all honesty, I don't really know how I feel, I am completely rubbish at expressing anything even vaguely emotional and cry at the drop of a hat so have a feeling I might be a bit soggy by the end of this!
I'll start by going back a bit: We are a very close family, always have been, always will be, so there is very little hidden from each other and although it can maybe be a little claustrophobic at times I certainly wouldn't have it any other way. I left home at 22 when I got married but only moved a few miles away and I was still at the house a few times a week so of course my parents and sister were the first to know when I found out I was pregnant a few years later. They were all delighted for us, but at times Bev found it hard as she saw it as something she would probably never have, she had previously been told by doctors that due to a variety of medical issues it was unlikely that she could have children and potentially only a 3% chance she would conceive naturally....how wrong they were!! Throughout my son's early years (and still now) Bev and him were very close and she absolutely doted on him and spoilt him rotten. He was the only grandchild on both sides and doesn't have any other aunties or uncles so he was the centre of attention. He was a very bright child and hit all of his milestones early on and did well when he started school.
Later on Bev left home and had her own studio, then her (ex) partner moved in and she fell pregnant, it was a bit of a shock and took a while to get our heads around but we were all over the moon. She had an ok but uncomfortable pregnancy, the main issues were SPD and very low blood pressure which made her pass out a lot so she ended up having to take time off work, at around the same time her partner lost his job too but she still did everything on her own and although he was at the birth (at least in body) it was our parents who were really there for her. They moved to a bigger house not long after Amira was born and within a year she fell pregnant again with Tariq and I was pregnant with my youngest son at the same time.....well, you know the rest as Bev has already told you in her story!!
As Bev has said before, I am generally the more relaxed between us....or as she puts it, so laid back I'm practically horizontal! I always try to see the brighter side of situations or the good in people (I'm sometimes disappointed). I am always the one to make light of things or to crack a joke when things get tough....it might seem that I don't care or that I'm just being glib and not taking things seriously but it's really a defence mechanism as I can't handle emotions at all. Nothing could be further from the truth, I care, deeply, but I struggle to show it sometimes. Bev has always been the confident one, I am actually quite shy. I am fine in front of a 100 strangers as they don't know me so I can put on an act but I hate 1:1 stuff or any form of confrontation.
When Amira was born, I loved her from the second I saw her the morning after she was born (hospital wouldn't let me in to visit on that night). She was perfect. She is still perfect to me and always will be.
I was so excited to have a little girl to be dressing up too...I love my sons dearly but boy clothes are so boring compared to girls!
The problems with Amira's behaviour started to appear quite early on as she NEVER slept and all the normal tricks were tried and failed, I just put it down as normal behaviour, my son was a poor sleeper too and a doctor had told me when he was little that some children just naturally need more sleep than others. When she started nursery I just thought her tantrums etc as normal childhood behaviour, the terrible twos. The nursery seemed to be nice enough and some days were better than others...good days were when Amira didn't bite or scratch, bad days could mean bloodshed! I tried to re-assure Bev that a lot of children go through similar phases and was sure she would come out the other side. Obviously, I was wrong.
Like many autistic children Amira often lashes out if she can't express what she is feeling or is over stimulated, we have all been hit, bitten and scratched but I have also been hugged, kissed and squeezed. Yes, we have cried but we have also laughed, a lot. As ever I try to keep things light and there really is a funny side to autism...like being presented with an egg out of the fridge and told to 'hatch it, now'! Like Amira running around with a towel over her head pretending to be a ghost then trying to pull my head off and reveal who I really was, while shouting 'those pesky kids! just like in a Scooby Doo episode!
How did I feel when Amira was diagnosed?
I don't really know to be honest, I wasn't shocked...all of the signs and pre-assessments pointed to an Autistic Spectrum Disorder. I was upset but to me the label didn't mean a lot, to me Amira is just Amira, the word autism doesn't change anything, she was still the same beautiful, loving, funny, creative, clever, imaginative, independent little girl she was the day before and I certainly don't love her any less for it.
How have things changed?
Hopefully, I don't treat Amira any differently to any of the other children. If she is mis-behaving, I tell her off. I try to do the same activities with her if she will let me, I try to engage her as much as I can, to chat about what she is doing...but mostly to just let her be a 'normal' child...in all of this we all sometimes see the autism first and a 5yr old little girl last. All children play, all children want their own way, all children act and react but some just process the information better than others....so as much as I can I try to let Amira do her own thing and work around her mood. Sometimes its all about picking your battles, is it really the end of the world if she goes out of the house in a mismatched outfit or odd shoes or with a winter coat on or even if she wants to stay at home and be completely naked!! Generally speaking we are pretty much ready for anything and try to follow Amira's lead. I recently took Tariq and Amira out to the shops and it started off really well, we had a little look around then went to the cafe for tea and cake, they both had a new book so kept them busy while we chatted and ate our snack, all was going very smoothly, afterwards we went to the till to pay and leave but on the way out Amira spotted something that she wanted and all hell broke loose when I said no as she already had a new colouring book. It escalated from that point to the mother of all tantrums with her lying right across the door-way so no-one could get in or out. After a bit of a struggle I moved her to the side, sat on the floor with my hands on her to reassure her and gently talking to her, after about 10minutes of kicking and screaming and the world and his wife walking past to have a good look at what was going on, lots of tuts and comments and even the security guard checking I wasn't trying to kidnap a child, it all stopped and calmed down like it had never happened.....I did buy her the extra book she wanted, not as bribery or as a 'reward' for her behaviour but as a comfort and because she had tried her hardest to calm down when I asked her to. We haven't been out and about for a few weeks due to the nursery runs taking up the middle part of the day but as the school holiday starts next week hopefully we will have some better weather for trips to the park etc.
How do I feel now?
At the moment I mostly still feel sad, and angry. I am sad that it has come to this, that all the pushing and fighting and kicking and screaming has lead to nothing at all, we are all basically no further forward than we were 6mths ago. I am sad at the whole situation and the effect if is having on MY family. MY sister is making herself ill with worry, she is mentally and physically exhausted , MY niece is going without any form of education or support and the longer she is out of it the harder it will be to get her settled back in.
I am so angry, not at the school, they did the best they could with the resources they had and I know they have a duty of care to the other children too. I am angry at the medical team, at the council for not helping the situation at all, for not realising how much of an impact this has on a families life. Why is there no support in place? A young child has been 'excluded' from school with no provision in place for any alternative support. Why could they not provide a home tutor, where has the money gone from the 1:1 support Amira was supposed to have - could this not still be used? When will they get this sorted out? When will Amira be given the education, support and care that she deserves and is entitled to?
I also feel guilty, I sometimes think that I am not doing enough to help. I try my best to do what I can but I think I fall short of the mark. I am there almost every day and do what I can and I know that my family will ALWAYS pull together but I feel I should be doing something more...I feel really useless, I don't know what else I can do other than just be there at the moment. I work, have my husband and kids, I have my church stuff and am secretary of our school PTA so have lots going on but I still think I should be doing more practical to help.
What next?
Who knows what happens next, more waiting for now I guess! I am looking forward to the future and I really hope that Amira is settled in her new school and getting the education and support she needs. Over the next few years hopefully we will be able to see her progress and they will help her to achieve her full potential, if she is anything like the rest of the family she won't let anything hold her back!
If anyone from NC or NT Council ever read this I hope they can see what effect their 'processes' and red-tape have on families, how they affect real people and real lives. Not just statistics, numbers, names on a page - REAL PEOPLE.....EVERY CHILD MATTERS!
I am Bev's sister . I am Amira's auntie.
In all honesty, I don't really know how I feel, I am completely rubbish at expressing anything even vaguely emotional and cry at the drop of a hat so have a feeling I might be a bit soggy by the end of this!
I'll start by going back a bit: We are a very close family, always have been, always will be, so there is very little hidden from each other and although it can maybe be a little claustrophobic at times I certainly wouldn't have it any other way. I left home at 22 when I got married but only moved a few miles away and I was still at the house a few times a week so of course my parents and sister were the first to know when I found out I was pregnant a few years later. They were all delighted for us, but at times Bev found it hard as she saw it as something she would probably never have, she had previously been told by doctors that due to a variety of medical issues it was unlikely that she could have children and potentially only a 3% chance she would conceive naturally....how wrong they were!! Throughout my son's early years (and still now) Bev and him were very close and she absolutely doted on him and spoilt him rotten. He was the only grandchild on both sides and doesn't have any other aunties or uncles so he was the centre of attention. He was a very bright child and hit all of his milestones early on and did well when he started school.
Later on Bev left home and had her own studio, then her (ex) partner moved in and she fell pregnant, it was a bit of a shock and took a while to get our heads around but we were all over the moon. She had an ok but uncomfortable pregnancy, the main issues were SPD and very low blood pressure which made her pass out a lot so she ended up having to take time off work, at around the same time her partner lost his job too but she still did everything on her own and although he was at the birth (at least in body) it was our parents who were really there for her. They moved to a bigger house not long after Amira was born and within a year she fell pregnant again with Tariq and I was pregnant with my youngest son at the same time.....well, you know the rest as Bev has already told you in her story!!
As Bev has said before, I am generally the more relaxed between us....or as she puts it, so laid back I'm practically horizontal! I always try to see the brighter side of situations or the good in people (I'm sometimes disappointed). I am always the one to make light of things or to crack a joke when things get tough....it might seem that I don't care or that I'm just being glib and not taking things seriously but it's really a defence mechanism as I can't handle emotions at all. Nothing could be further from the truth, I care, deeply, but I struggle to show it sometimes. Bev has always been the confident one, I am actually quite shy. I am fine in front of a 100 strangers as they don't know me so I can put on an act but I hate 1:1 stuff or any form of confrontation.
When Amira was born, I loved her from the second I saw her the morning after she was born (hospital wouldn't let me in to visit on that night). She was perfect. She is still perfect to me and always will be.
I was so excited to have a little girl to be dressing up too...I love my sons dearly but boy clothes are so boring compared to girls!
The problems with Amira's behaviour started to appear quite early on as she NEVER slept and all the normal tricks were tried and failed, I just put it down as normal behaviour, my son was a poor sleeper too and a doctor had told me when he was little that some children just naturally need more sleep than others. When she started nursery I just thought her tantrums etc as normal childhood behaviour, the terrible twos. The nursery seemed to be nice enough and some days were better than others...good days were when Amira didn't bite or scratch, bad days could mean bloodshed! I tried to re-assure Bev that a lot of children go through similar phases and was sure she would come out the other side. Obviously, I was wrong.
Like many autistic children Amira often lashes out if she can't express what she is feeling or is over stimulated, we have all been hit, bitten and scratched but I have also been hugged, kissed and squeezed. Yes, we have cried but we have also laughed, a lot. As ever I try to keep things light and there really is a funny side to autism...like being presented with an egg out of the fridge and told to 'hatch it, now'! Like Amira running around with a towel over her head pretending to be a ghost then trying to pull my head off and reveal who I really was, while shouting 'those pesky kids! just like in a Scooby Doo episode!
How did I feel when Amira was diagnosed?
I don't really know to be honest, I wasn't shocked...all of the signs and pre-assessments pointed to an Autistic Spectrum Disorder. I was upset but to me the label didn't mean a lot, to me Amira is just Amira, the word autism doesn't change anything, she was still the same beautiful, loving, funny, creative, clever, imaginative, independent little girl she was the day before and I certainly don't love her any less for it.
How have things changed?
Hopefully, I don't treat Amira any differently to any of the other children. If she is mis-behaving, I tell her off. I try to do the same activities with her if she will let me, I try to engage her as much as I can, to chat about what she is doing...but mostly to just let her be a 'normal' child...in all of this we all sometimes see the autism first and a 5yr old little girl last. All children play, all children want their own way, all children act and react but some just process the information better than others....so as much as I can I try to let Amira do her own thing and work around her mood. Sometimes its all about picking your battles, is it really the end of the world if she goes out of the house in a mismatched outfit or odd shoes or with a winter coat on or even if she wants to stay at home and be completely naked!! Generally speaking we are pretty much ready for anything and try to follow Amira's lead. I recently took Tariq and Amira out to the shops and it started off really well, we had a little look around then went to the cafe for tea and cake, they both had a new book so kept them busy while we chatted and ate our snack, all was going very smoothly, afterwards we went to the till to pay and leave but on the way out Amira spotted something that she wanted and all hell broke loose when I said no as she already had a new colouring book. It escalated from that point to the mother of all tantrums with her lying right across the door-way so no-one could get in or out. After a bit of a struggle I moved her to the side, sat on the floor with my hands on her to reassure her and gently talking to her, after about 10minutes of kicking and screaming and the world and his wife walking past to have a good look at what was going on, lots of tuts and comments and even the security guard checking I wasn't trying to kidnap a child, it all stopped and calmed down like it had never happened.....I did buy her the extra book she wanted, not as bribery or as a 'reward' for her behaviour but as a comfort and because she had tried her hardest to calm down when I asked her to. We haven't been out and about for a few weeks due to the nursery runs taking up the middle part of the day but as the school holiday starts next week hopefully we will have some better weather for trips to the park etc.
How do I feel now?
At the moment I mostly still feel sad, and angry. I am sad that it has come to this, that all the pushing and fighting and kicking and screaming has lead to nothing at all, we are all basically no further forward than we were 6mths ago. I am sad at the whole situation and the effect if is having on MY family. MY sister is making herself ill with worry, she is mentally and physically exhausted , MY niece is going without any form of education or support and the longer she is out of it the harder it will be to get her settled back in.
I am so angry, not at the school, they did the best they could with the resources they had and I know they have a duty of care to the other children too. I am angry at the medical team, at the council for not helping the situation at all, for not realising how much of an impact this has on a families life. Why is there no support in place? A young child has been 'excluded' from school with no provision in place for any alternative support. Why could they not provide a home tutor, where has the money gone from the 1:1 support Amira was supposed to have - could this not still be used? When will they get this sorted out? When will Amira be given the education, support and care that she deserves and is entitled to?
I also feel guilty, I sometimes think that I am not doing enough to help. I try my best to do what I can but I think I fall short of the mark. I am there almost every day and do what I can and I know that my family will ALWAYS pull together but I feel I should be doing something more...I feel really useless, I don't know what else I can do other than just be there at the moment. I work, have my husband and kids, I have my church stuff and am secretary of our school PTA so have lots going on but I still think I should be doing more practical to help.
What next?
Who knows what happens next, more waiting for now I guess! I am looking forward to the future and I really hope that Amira is settled in her new school and getting the education and support she needs. Over the next few years hopefully we will be able to see her progress and they will help her to achieve her full potential, if she is anything like the rest of the family she won't let anything hold her back!
If anyone from NC or NT Council ever read this I hope they can see what effect their 'processes' and red-tape have on families, how they affect real people and real lives. Not just statistics, numbers, names on a page - REAL PEOPLE.....EVERY CHILD MATTERS!
Tuesday, 3 July 2012
Baby steps are still steps!!!
Hoorah!! Getting somewhere! Looks like N Council are ignoring the wrong people this time! I have spoken again to our MP's secretary and she tells me that they had sent a letter to the council on the 1st June and have still not had any acknowledgment of receipt! She has informed me that if they do not get a response by end of this week 6th July she will take the matter back to the MP and ask him to start shaking some trees!!! About flipping time, I thought, but responded "oh, that would be greatly appreciated, thanks!"
I have told them that I am disgusted that my daughter has slipped through the councils loopholes and I asked if they stood by their slogan "Every Child Matters!" as it feels like every child, apart from Amira!! I asked why were we left with no support from anyone when Council had already agreed funding for 8hrs a week 1:1 when Amira was in school why did that stop because she was removed?? Also stating that I recently saw an article in our local newspaper where a woman from London originally, moved her child to 5 different areas all refusing her son a place in a special needs school yet when she got here she was offered a place immediately! I am, I have to say, delighted for her son that he is finally getting the support he needs, but what about Amira!! Where is her place??
I have been utterly exhausted recently as my mum has come out of hospital now! She is fine I am glad to report but unable to walk until who knows when!! I am managing the house, looking after kids and working all on 20-30 mins sleep per night! I will be honest, I cannot keep up the pace at the min and things are starting to slip! I have forgotten things at work, wrote down wrong dates etc..., I am burning food left right and centre (Well, I did that before all this anyway!) , falling over, forgetting appointments, not booking them in my own cases, and sleepwalking throughout most of the day! I am constantly asked "how do you do it?" or "I don't know how you do it!" and to be frank NOR DO I!! I don't think I can for much longer I seem to be crying more and smiling less. Crying more during daylight hours too, that cannot be good!! I am losing my temper quicker and with the wrong people too. Not at Amira but I am becoming firmer with Tariq as he is emulating Amiras' behaviours. He doesn't understand how she can get away with it and he cannot! She doesn't I just have to chastise her differently. How on earth do you explain Autism to a 4 yr old?? I'm 30+ and still don't get it!
I am now another year older and am certainly feeling it. Everyday seems to get longer and longer and funny enough even though my waking day is slightly longer than others at 23 & 1/2 hrs I never seem to find the time to fit everything in!
On the plus side I have received acknowledgement from Disability Living Allowance that I have been awarded the Highest Rate and the Lowest Rate Mobility! I was not 100% sure why you would receive money for having a child with Autism but now I am beginning to understand! It helps for all the time you have to take off work unpaid, for the petrol to get to places cause you cannot allow Amira to walk anywhere even whilst holding your hand, the extra things you have to replace from all the things Amira will break on a daily occurrence! Just today she has pulled down 2 curtain rails! Right off the wall screws, rail, curtains the lot!! All in a temper, the doors that get kicked in, toys, DVDs smashed! The list is endless!!!!
I don't want their money! I would rather live in a box, I want my daughter back!! She is in their somewhere! Sometimes I see her…not often, and it is getting less and less, but I know she is still there. I can see it in her eyes.
Amira seems to be getting worse to me just little things,she now has 3 imaginary friends. I have met Mandy and Sarah but she hasn't let me meet the 3rd! I suppose if you haven't got friends you would make up your own! Not sure where she got the names from! Her conversation with others is getting less and slowly I can see her slipping away from me again! I cannot bear the thought of that! I know there is no cure for Autism and some mum say it is not a disease and it doesn't need a cure! However by the Grace of God I would sell my Soul to the Devil himself if he would take it away!
I paused there just in case he turned up and made me an offer!! Nope!
As there is no cure I have looked into therapies that will help Amira develop! Only problem is these are all done with children in their SCHOOL!!
Aaaaggggggrrrrrhhhhhh!!!!!!
The better schools the better therapies!!! They have said that a mainstream school will cost council about £1000 per child per term, where as a Special needs School you can look at anywhere from £5000+! Of course if you go independent it is more again!! However the whole postcode lottery plays a major part in it if your child gets to go to my local independent SNS! May I add that geographically it is also the closest to me, and only a short 3 min drive from door to door!!
I went to pick up Amira's prescription today and when I got there expecting a bottle of Melatonin was told there wasn't any as the GP had stopped it as we were getting too much! I rang and explained the situation that Amira doesn't take meds we have to try a variation of methods and it usually takes me a good Couple of goes to get it in! Melatonin is completely ineffective if not taken in one go! Hiding in a bottle of juice is no good unless she drinks it off in one which is unlikely as it has a bitter taste! I was then told ah! Ok them but we have to check! "of course!" I said assuming they ment you know I was drugging my child or giving her the wrong dosage! "well it is £122 per bottle!" was her response! I then informed her that I didn't care how much it was a bottle and that if Amira needed it she should have it! I was flabbergasted! How stupid! Call herself educated!! The meds funny enough were made available for me immediately! Some people really do know how to push my buttons!!
My next step is to complete the next form for Carers Allowance, and the council have set up an appointment with Amira and me at my home on Wed with a educational psychologist!!!! I wish him the best of British! Also a letter came wanting an appointment for Speech & Language to be made! Funny NT council had already done all these and had Amira observed in a classroom environment playing with her peers! Surely that data should suffice! Talk about wasting money!! Do these councils not talk to each other at all? I know this because I sent a full in-depth report from each about Amira and her behaviour!
Well I suppose it is a good way for them to waste more time before the summer holidays! That way they can rest assured that Amira will not be starting until after Sept! That is if I don't have to appeal their choice of school!
I have as you can imagine been trawling the Internet for any type of research or info I can find regarding Autism and finally bit the bullet and went to a Pathways 4 All meeting! I was going anyway for work and ended up spilling my guts about the whole thing. What can say other than they are a lovely group of ladies and I would definitely go back. I also rang The National Autistic Society as my sister found a site where they were asking for parents to give feedback on the process of diagnosis for a study! I was a bit wary at first but then thought I have a duty to other parents to make sure what happened to Amira doesn't happen to their child! We have been accepted on the panel and await further instruction. However, when on the phone again to another lovely lady, I had to explain Amira to her and ended up suggesting I organise a Masquerade Ball for them to help raise funds!!! ( I know, I Know! What am I like!) I also had dealings with a charity this week called Family Lives! Another Lovely group of ladies that deal with phone calls from people with a whole manner of problems and used to do a 6 week call back programme with mums of Autistic children but due to their lack of funding have had to cut that facility, although they are always there to take calls from anyone for any problem!
See there are some Angels out there walking amongst us tirelessly doing work and truly helping others. Who am I to whinge cause I don't get enough sleep! Life is all about perspective really isn't it! About time I got some! This last week I went to a school that had been hit badly by a local weather disaster! Their boiler room was under 3ft of water and classrooms were swimming! First time ever the school had been closed, and, as it was a special needs school a lot of the kids had trouble understanding why it was, and some even had to come in for their routine! I witnessed parents and teachers crying as they looked at the state of the rooms! Myself, cleaners, head teachers, students all with mops in one hand and a bucket in the other started cleaning and tried to dry the place out. Eventually we got there and the school opened again the following following Monday. Sometimes it really is all about pulling together and how a group of people can make a difference! That is what I hope I am doing here with all of you!
Autism……by me
We are here, Fighting hard,
We are surviving. Just!
We are many and getting more
We are not Invisible,
We see you staring,
We hide behind closed doors,
We are Ashamed of the judgements, We dont need your opinions.
We are broken, battered, bruised yet strong,
We can be a force to be reckoned with, but are exhausted,
We are a shell of the person we once were,
We are more like our children than we care to admit,
We fear the future, day by day is hard enough,
We worry what will happen when we're not here?
We grieve for the life we pictured,
We hope for 1 day, just 1!
We beg for an answer,
We pray for sleep, rest or just 5 mins,
We ask for forgiveness for whatever Sin,
We ask for a cure that doesn't come,
We fight red tape and doctors too,
We struggle every day,
Because we LOVE you
For Amira xxx
I have told them that I am disgusted that my daughter has slipped through the councils loopholes and I asked if they stood by their slogan "Every Child Matters!" as it feels like every child, apart from Amira!! I asked why were we left with no support from anyone when Council had already agreed funding for 8hrs a week 1:1 when Amira was in school why did that stop because she was removed?? Also stating that I recently saw an article in our local newspaper where a woman from London originally, moved her child to 5 different areas all refusing her son a place in a special needs school yet when she got here she was offered a place immediately! I am, I have to say, delighted for her son that he is finally getting the support he needs, but what about Amira!! Where is her place??
I have been utterly exhausted recently as my mum has come out of hospital now! She is fine I am glad to report but unable to walk until who knows when!! I am managing the house, looking after kids and working all on 20-30 mins sleep per night! I will be honest, I cannot keep up the pace at the min and things are starting to slip! I have forgotten things at work, wrote down wrong dates etc..., I am burning food left right and centre (Well, I did that before all this anyway!) , falling over, forgetting appointments, not booking them in my own cases, and sleepwalking throughout most of the day! I am constantly asked "how do you do it?" or "I don't know how you do it!" and to be frank NOR DO I!! I don't think I can for much longer I seem to be crying more and smiling less. Crying more during daylight hours too, that cannot be good!! I am losing my temper quicker and with the wrong people too. Not at Amira but I am becoming firmer with Tariq as he is emulating Amiras' behaviours. He doesn't understand how she can get away with it and he cannot! She doesn't I just have to chastise her differently. How on earth do you explain Autism to a 4 yr old?? I'm 30+ and still don't get it!
I am now another year older and am certainly feeling it. Everyday seems to get longer and longer and funny enough even though my waking day is slightly longer than others at 23 & 1/2 hrs I never seem to find the time to fit everything in!
On the plus side I have received acknowledgement from Disability Living Allowance that I have been awarded the Highest Rate and the Lowest Rate Mobility! I was not 100% sure why you would receive money for having a child with Autism but now I am beginning to understand! It helps for all the time you have to take off work unpaid, for the petrol to get to places cause you cannot allow Amira to walk anywhere even whilst holding your hand, the extra things you have to replace from all the things Amira will break on a daily occurrence! Just today she has pulled down 2 curtain rails! Right off the wall screws, rail, curtains the lot!! All in a temper, the doors that get kicked in, toys, DVDs smashed! The list is endless!!!!
I don't want their money! I would rather live in a box, I want my daughter back!! She is in their somewhere! Sometimes I see her…not often, and it is getting less and less, but I know she is still there. I can see it in her eyes.
Amira seems to be getting worse to me just little things,she now has 3 imaginary friends. I have met Mandy and Sarah but she hasn't let me meet the 3rd! I suppose if you haven't got friends you would make up your own! Not sure where she got the names from! Her conversation with others is getting less and slowly I can see her slipping away from me again! I cannot bear the thought of that! I know there is no cure for Autism and some mum say it is not a disease and it doesn't need a cure! However by the Grace of God I would sell my Soul to the Devil himself if he would take it away!
I paused there just in case he turned up and made me an offer!! Nope!
As there is no cure I have looked into therapies that will help Amira develop! Only problem is these are all done with children in their SCHOOL!!
Aaaaggggggrrrrrhhhhhh!!!!!!
The better schools the better therapies!!! They have said that a mainstream school will cost council about £1000 per child per term, where as a Special needs School you can look at anywhere from £5000+! Of course if you go independent it is more again!! However the whole postcode lottery plays a major part in it if your child gets to go to my local independent SNS! May I add that geographically it is also the closest to me, and only a short 3 min drive from door to door!!
I went to pick up Amira's prescription today and when I got there expecting a bottle of Melatonin was told there wasn't any as the GP had stopped it as we were getting too much! I rang and explained the situation that Amira doesn't take meds we have to try a variation of methods and it usually takes me a good Couple of goes to get it in! Melatonin is completely ineffective if not taken in one go! Hiding in a bottle of juice is no good unless she drinks it off in one which is unlikely as it has a bitter taste! I was then told ah! Ok them but we have to check! "of course!" I said assuming they ment you know I was drugging my child or giving her the wrong dosage! "well it is £122 per bottle!" was her response! I then informed her that I didn't care how much it was a bottle and that if Amira needed it she should have it! I was flabbergasted! How stupid! Call herself educated!! The meds funny enough were made available for me immediately! Some people really do know how to push my buttons!!
My next step is to complete the next form for Carers Allowance, and the council have set up an appointment with Amira and me at my home on Wed with a educational psychologist!!!! I wish him the best of British! Also a letter came wanting an appointment for Speech & Language to be made! Funny NT council had already done all these and had Amira observed in a classroom environment playing with her peers! Surely that data should suffice! Talk about wasting money!! Do these councils not talk to each other at all? I know this because I sent a full in-depth report from each about Amira and her behaviour!
Well I suppose it is a good way for them to waste more time before the summer holidays! That way they can rest assured that Amira will not be starting until after Sept! That is if I don't have to appeal their choice of school!
I have as you can imagine been trawling the Internet for any type of research or info I can find regarding Autism and finally bit the bullet and went to a Pathways 4 All meeting! I was going anyway for work and ended up spilling my guts about the whole thing. What can say other than they are a lovely group of ladies and I would definitely go back. I also rang The National Autistic Society as my sister found a site where they were asking for parents to give feedback on the process of diagnosis for a study! I was a bit wary at first but then thought I have a duty to other parents to make sure what happened to Amira doesn't happen to their child! We have been accepted on the panel and await further instruction. However, when on the phone again to another lovely lady, I had to explain Amira to her and ended up suggesting I organise a Masquerade Ball for them to help raise funds!!! ( I know, I Know! What am I like!) I also had dealings with a charity this week called Family Lives! Another Lovely group of ladies that deal with phone calls from people with a whole manner of problems and used to do a 6 week call back programme with mums of Autistic children but due to their lack of funding have had to cut that facility, although they are always there to take calls from anyone for any problem!
See there are some Angels out there walking amongst us tirelessly doing work and truly helping others. Who am I to whinge cause I don't get enough sleep! Life is all about perspective really isn't it! About time I got some! This last week I went to a school that had been hit badly by a local weather disaster! Their boiler room was under 3ft of water and classrooms were swimming! First time ever the school had been closed, and, as it was a special needs school a lot of the kids had trouble understanding why it was, and some even had to come in for their routine! I witnessed parents and teachers crying as they looked at the state of the rooms! Myself, cleaners, head teachers, students all with mops in one hand and a bucket in the other started cleaning and tried to dry the place out. Eventually we got there and the school opened again the following following Monday. Sometimes it really is all about pulling together and how a group of people can make a difference! That is what I hope I am doing here with all of you!
Autism……by me
We are here, Fighting hard,
We are surviving. Just!
We are many and getting more
We are not Invisible,
We see you staring,
We hide behind closed doors,
We are Ashamed of the judgements, We dont need your opinions.
We are broken, battered, bruised yet strong,
We can be a force to be reckoned with, but are exhausted,
We are a shell of the person we once were,
We are more like our children than we care to admit,
We fear the future, day by day is hard enough,
We worry what will happen when we're not here?
We grieve for the life we pictured,
We hope for 1 day, just 1!
We beg for an answer,
We pray for sleep, rest or just 5 mins,
We ask for forgiveness for whatever Sin,
We ask for a cure that doesn't come,
We fight red tape and doctors too,
We struggle every day,
Because we LOVE you
For Amira xxx
Tuesday, 19 June 2012
All quiet on the north easterly front!
Well, since my last post I have had just 2 phone calls from the local MP's office, I was eventually told that they would ring me back after the Jubilee! Goverment and councils ALWAYS get their holidays! I have still not heard anything!!
I have now resigned myself to the fact that they are just not bothered at all and Amira is only one child in their vast constituency! However, they have not factored in for the one big mouth of her mother! My sister and I have been busy contacting lots of different people, including the papers (local and national) and radio stations and so far only the BBC Radio Newcastle have come back to me. We are just awaiting a follow up call on this for now! I also have now come to the conclusion that Amira will not be in any school until Sept/Oct time and there is not a damn thing I can do about it.
I just have filled out the never ending paper work to claim benefits for DLA (Disability Living Allowance), it will be 8 weeks before I will hear back from these. I have to say, as anyone out there that has filled this in will testify, this form breaks every mothers heart and puts it out there in black and white what your child can and cannot do! Horrific to read back! I actually received the forms back in May but waited and waited to fill them out as I didn't think I had it in me to actually complete! When I finally did I really broke down, this cannot be right, surely the Goverment know from clinical documentation and diagnosis who is entitled to what, do they really need the parent to spell it out too, in such graphic terms?
Without the DLA I will not be able to claim carers allowance. This is to help compensate for the amount of time I will sacrifice from work unpaid. I have been told I would actually be financially better off not working, but in all honesty I would really miss it! My work is my sanity, my social life and my way of giving back to the community and to charities, I love helping people and organising things. There are not many people who get to do a job from which they get such satisfaction, but I can honestly say I do and I am proud of it. Even if at times I whinge and moan about being tired and would just love to go to bed. If I didn't work I don't think I would ever pass the doors and do very much at all. I am aware that I have no life, I have a very solitary routine and although I am usually surrounded by people, I am very very alone. I sometimes feel that no one can truly understand how I feel as they are not in my position. I know I should speak to other mums. Anyone who knows me would say that I am be an extroverted person and by no means shy, they would be right, but where my feelings are concerned I tend to "keep my own council!" as my nana would say and bottle things up! No wonder my skin is as bad as it is. How many mums would understand when you say there are times that you wish that you had never had your child? That you wonder if they would be better off with someone who can look after them properly because you feel that you are not doing a good enough job. For christ sake, surely it's just the basics to put your child into school, stop them for hitting, biting, scratching etc! I can't even do that. Even Tariq now finds that when things are not going his way that he can just lash out. The guilt I feel for even having that thought in my head for a split second consumes me and makes me feel like the worst mother. I am so tired yet I cannot sleep even when she does. I am alone, and have hit a brick wall with government and council. I have another 3 months to go and I'm afraid the light at the end of my tunnel has gone out.
An update on Amira:
Unfortunately, as I feared things are getting worse. She now has violet outburst more and more frequently. My sister took her and Tariq out to a cafe and they behaved beautifully but as they went to leave she had an outburst. My sister was not sure what triggered it but was suddenly aware of the amount of people staring as she had to pin her down in the middle of the entrance, trying to move her to the side so people could get past. The passing comments of just leave her she will soon stop, or the looks off disgust that you cannot control your child. I've even had some tell me that a good spanking would get that out of her! Everyone is so quick to give there opinion, especially when autism has no physical symptoms!! I wonder if my sister now realises why I don't go out very often without someone else with me! I hate the stares and the comments as I feel ashamed and embarrassed, that my child can cause such an uproar, that she can bring a whole shop to her gaze. I held a big community event a couple of weeks ago and it was an outdoor thing with a few family members taking part too. My mam & dad brought Amira down to let her see all the stalls and to play in the playground. Unfortunately, Amira turned for no reason on another child, scratching down her face. I was mortified! The mother of this child works with me and I quickly offered my apologies and she already knew of Amiras condition but that still does not make it ok for Amira to do that. I still believe in trying to teach her that it is wrong. Amira was taken home. As soon as I got in I sent the child's mum another apology and she accepted it gracefully although I still have avoided her at work due to embarrassment on my side.
My nephew had his first holy communion last weekend, a very proud moment that unfortunately I was unable to see as Amira went into melt down that morning and was not getting ready without a fight. It started at 10:20 we eventually got there at 12! I was sad to have missed it and felt that I had let my sister down. When we got there Amira was fine and at the party afterwards she was a little minx going places she wasn't meant to etc! But, luckily there were a lot of people there that had read this blog and knew her by sight. Very kind and considerate faces so I was not embarrassed when she ripped her dress then sat on my knee refusing to move! Pretending to be asleep!!!! Mammy knew better, every time I tried to move she would hold on tighter and refuse to move. When it was time to leave she was straight up and wide awake.
Lately Amira has had an outburst nearly everyday and has gone down to 30-40 mins sleep in 24 hrs! I am so tired I often cry for no apparent reason, I comfort eat and smoke to keep me going! Amira has now started wetting herself to, I am not even sure why! This has happened 4 times in the last week and it is very unlike her, I am wondering if it could be because she is feeling my stress. On the plus side Amira is now more loving than she has ever been asking for hugs, squishes and kisses, sitting on my knee and squeezing me so tightly. This morning she even cried when I left to take Tariq to school. Very uncommon! I took her up to the school to collect him and she even came to the gate without any problems, however, when I went to collect my sisters children from school the outburst started again. Kicking, nipping, biting and scratching me. Finally, I just had to put her over my shoulder and carry her there! When we were in the closed yard I asked one of the other mums to watch her whilst I went inside for my sisters youngest, she sat on the floor and cried, I was gone seconds and when I can back she and the other mum were gone! I started to panic but found her sitting on the playground yards from the nursery yard crying her eyes out. The other mum was nowhere to be seen!! I then piggy backed her and had the 2 younger ones by either hand the eldest following behind. When we got past the gates the 2 younger ones chased each other down the street and straight over the main road I screamed and luckily there was no cars on the road at that point! I just could not keep up with them whilst carrying Amira at the same time.
I am now entirely exhausted, my mam is in hospital at the moment and has just had her foot operated on and will now be out of action for the next 3 months. She does so much for me I know this will be a hard time, but, we have done it before when she had the other foot done last year so we will, I am in no doubt, manage again.
I will of course keep you all informed of any further info as it happens. Please feel free to add any comments or tips below. Thanks again for reading, as I have said I truly believe that people can make a difference and I am still holding on to that hope, so keep sharing this with as many people as possible if you can, maybe it will eventually reach someone who can help us or be of use to another family going through a similar situation.
I have now resigned myself to the fact that they are just not bothered at all and Amira is only one child in their vast constituency! However, they have not factored in for the one big mouth of her mother! My sister and I have been busy contacting lots of different people, including the papers (local and national) and radio stations and so far only the BBC Radio Newcastle have come back to me. We are just awaiting a follow up call on this for now! I also have now come to the conclusion that Amira will not be in any school until Sept/Oct time and there is not a damn thing I can do about it.
I just have filled out the never ending paper work to claim benefits for DLA (Disability Living Allowance), it will be 8 weeks before I will hear back from these. I have to say, as anyone out there that has filled this in will testify, this form breaks every mothers heart and puts it out there in black and white what your child can and cannot do! Horrific to read back! I actually received the forms back in May but waited and waited to fill them out as I didn't think I had it in me to actually complete! When I finally did I really broke down, this cannot be right, surely the Goverment know from clinical documentation and diagnosis who is entitled to what, do they really need the parent to spell it out too, in such graphic terms?
Without the DLA I will not be able to claim carers allowance. This is to help compensate for the amount of time I will sacrifice from work unpaid. I have been told I would actually be financially better off not working, but in all honesty I would really miss it! My work is my sanity, my social life and my way of giving back to the community and to charities, I love helping people and organising things. There are not many people who get to do a job from which they get such satisfaction, but I can honestly say I do and I am proud of it. Even if at times I whinge and moan about being tired and would just love to go to bed. If I didn't work I don't think I would ever pass the doors and do very much at all. I am aware that I have no life, I have a very solitary routine and although I am usually surrounded by people, I am very very alone. I sometimes feel that no one can truly understand how I feel as they are not in my position. I know I should speak to other mums. Anyone who knows me would say that I am be an extroverted person and by no means shy, they would be right, but where my feelings are concerned I tend to "keep my own council!" as my nana would say and bottle things up! No wonder my skin is as bad as it is. How many mums would understand when you say there are times that you wish that you had never had your child? That you wonder if they would be better off with someone who can look after them properly because you feel that you are not doing a good enough job. For christ sake, surely it's just the basics to put your child into school, stop them for hitting, biting, scratching etc! I can't even do that. Even Tariq now finds that when things are not going his way that he can just lash out. The guilt I feel for even having that thought in my head for a split second consumes me and makes me feel like the worst mother. I am so tired yet I cannot sleep even when she does. I am alone, and have hit a brick wall with government and council. I have another 3 months to go and I'm afraid the light at the end of my tunnel has gone out.
An update on Amira:
Unfortunately, as I feared things are getting worse. She now has violet outburst more and more frequently. My sister took her and Tariq out to a cafe and they behaved beautifully but as they went to leave she had an outburst. My sister was not sure what triggered it but was suddenly aware of the amount of people staring as she had to pin her down in the middle of the entrance, trying to move her to the side so people could get past. The passing comments of just leave her she will soon stop, or the looks off disgust that you cannot control your child. I've even had some tell me that a good spanking would get that out of her! Everyone is so quick to give there opinion, especially when autism has no physical symptoms!! I wonder if my sister now realises why I don't go out very often without someone else with me! I hate the stares and the comments as I feel ashamed and embarrassed, that my child can cause such an uproar, that she can bring a whole shop to her gaze. I held a big community event a couple of weeks ago and it was an outdoor thing with a few family members taking part too. My mam & dad brought Amira down to let her see all the stalls and to play in the playground. Unfortunately, Amira turned for no reason on another child, scratching down her face. I was mortified! The mother of this child works with me and I quickly offered my apologies and she already knew of Amiras condition but that still does not make it ok for Amira to do that. I still believe in trying to teach her that it is wrong. Amira was taken home. As soon as I got in I sent the child's mum another apology and she accepted it gracefully although I still have avoided her at work due to embarrassment on my side.
My nephew had his first holy communion last weekend, a very proud moment that unfortunately I was unable to see as Amira went into melt down that morning and was not getting ready without a fight. It started at 10:20 we eventually got there at 12! I was sad to have missed it and felt that I had let my sister down. When we got there Amira was fine and at the party afterwards she was a little minx going places she wasn't meant to etc! But, luckily there were a lot of people there that had read this blog and knew her by sight. Very kind and considerate faces so I was not embarrassed when she ripped her dress then sat on my knee refusing to move! Pretending to be asleep!!!! Mammy knew better, every time I tried to move she would hold on tighter and refuse to move. When it was time to leave she was straight up and wide awake.
Lately Amira has had an outburst nearly everyday and has gone down to 30-40 mins sleep in 24 hrs! I am so tired I often cry for no apparent reason, I comfort eat and smoke to keep me going! Amira has now started wetting herself to, I am not even sure why! This has happened 4 times in the last week and it is very unlike her, I am wondering if it could be because she is feeling my stress. On the plus side Amira is now more loving than she has ever been asking for hugs, squishes and kisses, sitting on my knee and squeezing me so tightly. This morning she even cried when I left to take Tariq to school. Very uncommon! I took her up to the school to collect him and she even came to the gate without any problems, however, when I went to collect my sisters children from school the outburst started again. Kicking, nipping, biting and scratching me. Finally, I just had to put her over my shoulder and carry her there! When we were in the closed yard I asked one of the other mums to watch her whilst I went inside for my sisters youngest, she sat on the floor and cried, I was gone seconds and when I can back she and the other mum were gone! I started to panic but found her sitting on the playground yards from the nursery yard crying her eyes out. The other mum was nowhere to be seen!! I then piggy backed her and had the 2 younger ones by either hand the eldest following behind. When we got past the gates the 2 younger ones chased each other down the street and straight over the main road I screamed and luckily there was no cars on the road at that point! I just could not keep up with them whilst carrying Amira at the same time.
I am now entirely exhausted, my mam is in hospital at the moment and has just had her foot operated on and will now be out of action for the next 3 months. She does so much for me I know this will be a hard time, but, we have done it before when she had the other foot done last year so we will, I am in no doubt, manage again.
I will of course keep you all informed of any further info as it happens. Please feel free to add any comments or tips below. Thanks again for reading, as I have said I truly believe that people can make a difference and I am still holding on to that hope, so keep sharing this with as many people as possible if you can, maybe it will eventually reach someone who can help us or be of use to another family going through a similar situation.
Sunday, 3 June 2012
Keep fighting
I have now heard back from MP's office and they asked what had happened since the inclusion panel meeting! I explained the situation and the secretary asked why Amira couldn't be placed in the Independent School until the statement was completed? I said she would have to ask NC Council that as I had already asked and they just told me that was not an option! I also would only want her there if they were going to keep her there permanently, after all I don't want her moved around and passed from pillar to post. They promised they would ring me back on Friday.
True to their word I heard back from the office on Friday afternoon, although it was a different person they did know some of Amira's story! I however decided he should be filled in on the entire situation. I was at work and was on my lunch break and in the outdoor smoking area surrounded by colleagues. They could tell who I was on the phone too and could see how agitated I was getting as I was being told that, with the Bank Holiday weekend I wouldn't hear back until at least next week as they were trying to speak to the council and find out what was going on. As I explained I do understand the council have their processes, however. how can they allow my daughter to slip through their red tape? I am not asking for anything more than what she is entitled to.
I admit after coming off the phone I felt lower than ever. If the MP's office cannot get anywhere with the council how do they expect anyone else too?!
I have sent an application off to the Houses of Parliment to start an e-petition for the Goverment to change their process and give parents a step by step guide. Listing all departments and contact details for every step. Problem: it will need 100,000 names to get the petition even seen by the House of Commons! Hope I can rely on everyone to sign?
On a personal note, my sister asked me yesterday if she could take Amira with her to Church last night. My nephew has his First Communion on the 16th June and we wanted to get her used to going to church and know what to expect. It started with Amira refusing to go without me and of course Tariq was not going to let us go without him! We took crayons, colouring book, books, juice and crisps and off we all went!! I was nervous before we even got there, warning my sister that if she starts then we will just have to get up and go. My sister in her very laid back approach told me everything would be fine and not to worry, everyone there would just have to accept Amira as she is and they did make us very welcome. I didn't expect what happened though, Amira was a little anxious, hiding under chairs when the singing started, cupping her hands over her ears! She then climbed out from under the pew the opposite way between the ladies in fronts legs! My sister caught her that time and she took her out the back to the kitchen for her to chill out a bit. A few minutes later they were back but not for long as she broke free again this time she was on the alter! Squealing and laughing! Sticking her tounge out to the congregation "you cannot catch me! Na na na na na!" Amira then started trying to blow all the candles out! Aaaagggrrrhhhhh!! The priest never even flickered, the congregation barely batted an eyelid and we finally cornered her. Back at the seats with Amira colouring in quite nicely the singing started again! Under the pew she went! This time she was calm and I listened to the words. My tears just started to flow. I couldn't hold them back, I was now sobbing unable to stop myself. I was part angry with God, part embarrassed. The anger was winning, I wanted to know: why my daughter? Why had God done this to her? What had she ever done? Was it me? Am I paying for some sin? I started praying for Gods forgiveness and asking for his help! Please help her, give it to me. I would do anything. He could have everything. I would be here every day if he could just help her. Take my life for her to have a chance at one. Please God, I know you could.
My sister saw me crying and kept asking what was wrong? I'm think she thought I was just embarrassed at first and upset at Amiras behaviour. I am fully aware of how Amira would have behaved. She is always like this, she especially loves a stage to perform on! I am prepared for a life of not being able to go places and I am aware of the looks and stares you get when you do go! People always assume that she is naughty and I should be taking her in hand. It is a normal assumption, I know that. However, Amira really doesn't mean any harm. There were now tears running down my sisters face too and my sobs were getting louder. Tariq saw my face and I had to suck it up. How pathetic was I? What a hypercritical person I am. I don't go to church like my sister, or mosque like the kids dad does. They both go once or twice a week. Doesn't make me a bad person though! Does it? I am very charitable. I help out lots of causes! That has to help my plea to God surely?? When I was told Amira's diagnosis I kind of lost my faith (CofE) my sister is Catholic and the kids father Muslim. I was happy believing but not worshipping. Never even had my kids baptised! I was angry when I found out and this was my first time to have a shall we say "Showdown" with the big man himself!! I suppose it has proved one thing to me though, I obviously still believe, no matter how angry I am, and don't understand still, why!
I am just so tired now, I don't think I have that much fight left in me, but I have to! I will not give in, I will not lie down to council policy, I will never give up on my daughter, I will not stop trying to change ignorance and I will not stop looking for a cure! Something has to change with UK procedure or some one has to give in and I assure you all it will not be me!
True to their word I heard back from the office on Friday afternoon, although it was a different person they did know some of Amira's story! I however decided he should be filled in on the entire situation. I was at work and was on my lunch break and in the outdoor smoking area surrounded by colleagues. They could tell who I was on the phone too and could see how agitated I was getting as I was being told that, with the Bank Holiday weekend I wouldn't hear back until at least next week as they were trying to speak to the council and find out what was going on. As I explained I do understand the council have their processes, however. how can they allow my daughter to slip through their red tape? I am not asking for anything more than what she is entitled to.
I admit after coming off the phone I felt lower than ever. If the MP's office cannot get anywhere with the council how do they expect anyone else too?!
I have sent an application off to the Houses of Parliment to start an e-petition for the Goverment to change their process and give parents a step by step guide. Listing all departments and contact details for every step. Problem: it will need 100,000 names to get the petition even seen by the House of Commons! Hope I can rely on everyone to sign?
On a personal note, my sister asked me yesterday if she could take Amira with her to Church last night. My nephew has his First Communion on the 16th June and we wanted to get her used to going to church and know what to expect. It started with Amira refusing to go without me and of course Tariq was not going to let us go without him! We took crayons, colouring book, books, juice and crisps and off we all went!! I was nervous before we even got there, warning my sister that if she starts then we will just have to get up and go. My sister in her very laid back approach told me everything would be fine and not to worry, everyone there would just have to accept Amira as she is and they did make us very welcome. I didn't expect what happened though, Amira was a little anxious, hiding under chairs when the singing started, cupping her hands over her ears! She then climbed out from under the pew the opposite way between the ladies in fronts legs! My sister caught her that time and she took her out the back to the kitchen for her to chill out a bit. A few minutes later they were back but not for long as she broke free again this time she was on the alter! Squealing and laughing! Sticking her tounge out to the congregation "you cannot catch me! Na na na na na!" Amira then started trying to blow all the candles out! Aaaagggrrrhhhhh!! The priest never even flickered, the congregation barely batted an eyelid and we finally cornered her. Back at the seats with Amira colouring in quite nicely the singing started again! Under the pew she went! This time she was calm and I listened to the words. My tears just started to flow. I couldn't hold them back, I was now sobbing unable to stop myself. I was part angry with God, part embarrassed. The anger was winning, I wanted to know: why my daughter? Why had God done this to her? What had she ever done? Was it me? Am I paying for some sin? I started praying for Gods forgiveness and asking for his help! Please help her, give it to me. I would do anything. He could have everything. I would be here every day if he could just help her. Take my life for her to have a chance at one. Please God, I know you could.
My sister saw me crying and kept asking what was wrong? I'm think she thought I was just embarrassed at first and upset at Amiras behaviour. I am fully aware of how Amira would have behaved. She is always like this, she especially loves a stage to perform on! I am prepared for a life of not being able to go places and I am aware of the looks and stares you get when you do go! People always assume that she is naughty and I should be taking her in hand. It is a normal assumption, I know that. However, Amira really doesn't mean any harm. There were now tears running down my sisters face too and my sobs were getting louder. Tariq saw my face and I had to suck it up. How pathetic was I? What a hypercritical person I am. I don't go to church like my sister, or mosque like the kids dad does. They both go once or twice a week. Doesn't make me a bad person though! Does it? I am very charitable. I help out lots of causes! That has to help my plea to God surely?? When I was told Amira's diagnosis I kind of lost my faith (CofE) my sister is Catholic and the kids father Muslim. I was happy believing but not worshipping. Never even had my kids baptised! I was angry when I found out and this was my first time to have a shall we say "Showdown" with the big man himself!! I suppose it has proved one thing to me though, I obviously still believe, no matter how angry I am, and don't understand still, why!
I am just so tired now, I don't think I have that much fight left in me, but I have to! I will not give in, I will not lie down to council policy, I will never give up on my daughter, I will not stop trying to change ignorance and I will not stop looking for a cure! Something has to change with UK procedure or some one has to give in and I assure you all it will not be me!
Wednesday, 30 May 2012
When you feel like hope is gone!
Look inside you and be strong???
I am finding that very difficult at the moment!
How many times can you be given hope and let down? I feel like a deflated balloon! There is only so much fight a person has, I am usually the glass is half full sort of girl but right now it feels like it is full of hot air!
I do not nor think I will ever understand the British Council/Goverment! I bet if I was well off I wouldn't have this trouble! Or even lived down south! Maybe I haven't shouted loud enough or spoken to the right person yet but I have now run out of options! The Mayor, MP and press are yet to return my calls! I thought as much, post-election they are never really interested!
Anyway! The inclusion panel met on the 24th of May and I rang up the SEN at NC Council on the 25th at 2pm on my break at work! He had the cheek to say he had been trying to call me this morning! I had no missed calls on my mobile, but he may have been trying to ring the house phone, although I doubt it as my dad and my sister were there all day with Amira! He explained that the panel have confirmed Amira can go ahead with being statemented! Yes you heard right she can now be statemented! We are only at the first hurdle!
In the meantime, their Special Needs School (TB) is full and won't have a space until Sept/Oct! In the meantime they 'may' put Amira in an ARC school (TV) with an additional 1:1 support worker until then and change her schools when the time comes in Oct! I told him that would not be happening! Whatever school she goes to will be her school! No chopping and changing! How can I expect a 5 year old to understand that, let alone an autistic child, I know you hate school but you are going to a new school with people you don't know and have a someone else there to work with you 1:1 who you also don't know. Then after a term you will go on holiday for 6 weeks and then go to a different school again with all new people and start all over again!!!!!!
NO! I am not doing it! I'm not setting her up for certain failure! He then asked what I suggested and I asked about NT council? They have a Local Authority Special Needs School that is just 5 mins away from my door (BH) which is also Autism specialised. I have worked with the school over the last few years in connection with my job and they have always been great! They are fantastic with the kids and seem to have an amazing bond with them as well as encouraging them and helping them develop! On top of all that, I have a trust in the school, that they would do their best by my daughter and help her to be the person I know she can be. He agreed that it was a Local Authority School and as long as they had space AND he spoke to his counterpart at NT Council it shouldn't be a problem! He would call me back on Tues (29th May)!
Hooray! I let out a huge squeal in the smoking shed and a friend who knew what was going on got the whole conversation relayed! She was so pleased for me! I was getting somewhere! No one wants to send their child to a special needs school but if you have to you want some choice! After all when you pick your child's mainstream school you get a choice of 4!!! Why is it different for us that have to look at Special Needs Schooling? Anyway, I was ecstatic! I rang BH as I had to speak to them anyway, I am organising an event for the 9th of June and they are holding a stall I needed to clarify a few details!! After I went through business I asked cheekily if they had any spaces in their school for Amira? The lady I spoke to knew a bit about her already from previous conversations and she listened as I abbreviated the whole situation although she said she couldn't do anything she told me that there was space!!!! As I hung up I allowed my self to get even more excited! Was this it, had I done it???? I thought what else did he need? Contact his counterpart at NT council! I had already spoken to him! He was lovely and he tried everything to get things moving before, he also had been active in ringing NC council with me to get them to respond! He already knows Amiras backgound! He would definitely help! That's it! She is in! Phew! I was near tears with joy! I practically skipped through the store and found my friend working, I told her all about it and she was so pleased. She had seen me near breaking point earlier on that day. I just couldn't stop crying and thought this day would never come. I would wait until Tues and when he rings to confirm I will tell him I will take her there on Wed morning myself and will stay with her as long as they needed.
Nothing like getting ahead of myself was there! I waited by the phone on Tues and by 11am I started ringing the SEN at NC Council! Meeting: left message, 12:30: away from desk, left another message, 1:50: meeting another message left, 3:00: still in meeting, 3:45 Meeting he would get back to me! I told them I was happy to hold until he got out of his meeting! 24 mins later. He took my call!
Hello Mrs Salih!! ( aggrrrhhh!) it's Miss Williams I corrected him, my daughters surname is Salih! He would not be sending Amira to BH!! You could have knocked me over with a feather, the wind had literally been taken out of my sails! He then told me that if he sent her there it would be for assessment only and they would have to give her a full term there. This would then delay the statementing process so it would be best to surge on through with the statement as planned! The next meeting would be on the 30th of July and that is when all departments will have to have their paperwork in by! Then the panel would meet again by the beginning of September and assign Amira a school within the NC Council District!
*Gobsmacked*
I asked again as I hadn't really heard properly! My brain had kind of sunk, I had Amira and Tariq running around screaming and my Auntie had just arrived with some home-baked pie and scones for us too! Did he just say meeting again on the 30th of July, look to start in September??? No, surely not!
Yep, he did! He said BH would probably not take her anyway as Amira didn't have a statement yet! (in other words he hadn't even asked!) Slow down the process??? I have seen snails work at a faster pace than NC Council! He said this was definitely the best course of action and by the first meeting in September Amira would have a school assigned! I asked what if I didn't agree with the school they chose? I really don't want her that far away! Amira does not travel well and during rush hour there in the morning and on her way home would be an hour at least each way! He told me I could always appeal the decision when it was made in September, however, this would delay the process further, appeals can take a further 26weeks!
I hung up and as the information sunk in, I am speechless! I told my dad and my Aunt what had been said. My aunt is 70+ and was furious! 'That is not right! Get on the phone to the papers, ring the radios they cannot do this'. My dad is just so angry at the system, that his granddaughter is left out and let down. He and my whole family have paid into this system for years, all worked never claimed benefits and look what you get! NOTHING! My dad saw the disappointment in my face and didn't push the subject as I think he knew I would explode! When my mum and sister came in I told them too! They too don't understand how this can be right!
I am now at a complete loss! Amira is now only sleeping for about 30-60 mins at a time at night sometimes having more short sleeps throughout the day! She has no structure or real stimulation and doesn't like to leave the house! Tariq is getting later and later for school each morning as he doesn't understand why his sister is not coming too! Fighting with me to take her too. He loves school but doesn't understand why he goes and she doesn't. Amira doesn't fight as much right now and as she swings on her playground in the garden (my dad has built what looks like a park in the garden to keep her busy!) Amira will spell words for me and always asks me to count her down from 10-1 blast off and push her to the moon! M-O-O-N!
My mum has had confirmation of her hospital date and gets her foot operated on mid June and we are waiting for my dads date for his surgery on his knee too! That will be difficult to cope with but as always with our family we will just get on and cope! Some how!
I have now given up hope, resigning to the fact that in the councils eyes my daughter is just a number, they as well as the MP's, Councillors, Mayor and The Press simply don't care! It doesn't benefit them. The elections are over and the story is obviously not news worthy! If I was a celebrity then I'm sure it would be different. Although I'm sure they didn't have the issue of getting their child into the right school! It is amazing what money can buy! Amira is just a number in the system and will be dealt with when they see fit, in their time! Regardless of what this is doing to her. Amira has already been out of school for 5 weeks! It will be 19 weeks before the Sept term starts and she won't be starting straight away! That is nearly 6 months my child is expected to be excluded from school! If this isn't discrimination I don't know what is! I have even looked into the possibility of moving home into the NT Council catchment! Ha! To start I probably could not cope alone, second I most definitely couldn't afford it, unless I gave up work and sponged off the Goverment! (I really don't want to do that I love my job, it gives me a sense of worth and an adult environment I can escape to!) third, get this, my mam and dads house is too big, I couldn't get a council house! I could be sneaky and just put down a relatives address that lives in NT Council district? Nope, I couldn't firstly, I am not very good at lying I have telltale grin/smirk, secondly, the whole process would have to started all over again! Third, when Amira started whichever school they pick the escort/transport people collect from that address and take them to school! See I have thought it through! Not like me at all!!
I am now completely lost. Do I get in touch with citizens advice/solicitor?? What could they do anyway? Do I sue the Council as I have been advised to, for discrimination, and see how quickly they get her into a school then? Do I lobby the Houses of Parliment? Try the press again? Contact the MP again? I truly believed that the council and MP's actually worked for us, the people! I thought we paid our taxes for them to look after our schools and health! I was obviously mis-informed or very naive!
Please Help Me! What do I do now?
I am finding that very difficult at the moment!
How many times can you be given hope and let down? I feel like a deflated balloon! There is only so much fight a person has, I am usually the glass is half full sort of girl but right now it feels like it is full of hot air!
I do not nor think I will ever understand the British Council/Goverment! I bet if I was well off I wouldn't have this trouble! Or even lived down south! Maybe I haven't shouted loud enough or spoken to the right person yet but I have now run out of options! The Mayor, MP and press are yet to return my calls! I thought as much, post-election they are never really interested!
Anyway! The inclusion panel met on the 24th of May and I rang up the SEN at NC Council on the 25th at 2pm on my break at work! He had the cheek to say he had been trying to call me this morning! I had no missed calls on my mobile, but he may have been trying to ring the house phone, although I doubt it as my dad and my sister were there all day with Amira! He explained that the panel have confirmed Amira can go ahead with being statemented! Yes you heard right she can now be statemented! We are only at the first hurdle!
In the meantime, their Special Needs School (TB) is full and won't have a space until Sept/Oct! In the meantime they 'may' put Amira in an ARC school (TV) with an additional 1:1 support worker until then and change her schools when the time comes in Oct! I told him that would not be happening! Whatever school she goes to will be her school! No chopping and changing! How can I expect a 5 year old to understand that, let alone an autistic child, I know you hate school but you are going to a new school with people you don't know and have a someone else there to work with you 1:1 who you also don't know. Then after a term you will go on holiday for 6 weeks and then go to a different school again with all new people and start all over again!!!!!!
NO! I am not doing it! I'm not setting her up for certain failure! He then asked what I suggested and I asked about NT council? They have a Local Authority Special Needs School that is just 5 mins away from my door (BH) which is also Autism specialised. I have worked with the school over the last few years in connection with my job and they have always been great! They are fantastic with the kids and seem to have an amazing bond with them as well as encouraging them and helping them develop! On top of all that, I have a trust in the school, that they would do their best by my daughter and help her to be the person I know she can be. He agreed that it was a Local Authority School and as long as they had space AND he spoke to his counterpart at NT Council it shouldn't be a problem! He would call me back on Tues (29th May)!
Hooray! I let out a huge squeal in the smoking shed and a friend who knew what was going on got the whole conversation relayed! She was so pleased for me! I was getting somewhere! No one wants to send their child to a special needs school but if you have to you want some choice! After all when you pick your child's mainstream school you get a choice of 4!!! Why is it different for us that have to look at Special Needs Schooling? Anyway, I was ecstatic! I rang BH as I had to speak to them anyway, I am organising an event for the 9th of June and they are holding a stall I needed to clarify a few details!! After I went through business I asked cheekily if they had any spaces in their school for Amira? The lady I spoke to knew a bit about her already from previous conversations and she listened as I abbreviated the whole situation although she said she couldn't do anything she told me that there was space!!!! As I hung up I allowed my self to get even more excited! Was this it, had I done it???? I thought what else did he need? Contact his counterpart at NT council! I had already spoken to him! He was lovely and he tried everything to get things moving before, he also had been active in ringing NC council with me to get them to respond! He already knows Amiras backgound! He would definitely help! That's it! She is in! Phew! I was near tears with joy! I practically skipped through the store and found my friend working, I told her all about it and she was so pleased. She had seen me near breaking point earlier on that day. I just couldn't stop crying and thought this day would never come. I would wait until Tues and when he rings to confirm I will tell him I will take her there on Wed morning myself and will stay with her as long as they needed.
Nothing like getting ahead of myself was there! I waited by the phone on Tues and by 11am I started ringing the SEN at NC Council! Meeting: left message, 12:30: away from desk, left another message, 1:50: meeting another message left, 3:00: still in meeting, 3:45 Meeting he would get back to me! I told them I was happy to hold until he got out of his meeting! 24 mins later. He took my call!
Hello Mrs Salih!! ( aggrrrhhh!) it's Miss Williams I corrected him, my daughters surname is Salih! He would not be sending Amira to BH!! You could have knocked me over with a feather, the wind had literally been taken out of my sails! He then told me that if he sent her there it would be for assessment only and they would have to give her a full term there. This would then delay the statementing process so it would be best to surge on through with the statement as planned! The next meeting would be on the 30th of July and that is when all departments will have to have their paperwork in by! Then the panel would meet again by the beginning of September and assign Amira a school within the NC Council District!
*Gobsmacked*
I asked again as I hadn't really heard properly! My brain had kind of sunk, I had Amira and Tariq running around screaming and my Auntie had just arrived with some home-baked pie and scones for us too! Did he just say meeting again on the 30th of July, look to start in September??? No, surely not!
Yep, he did! He said BH would probably not take her anyway as Amira didn't have a statement yet! (in other words he hadn't even asked!) Slow down the process??? I have seen snails work at a faster pace than NC Council! He said this was definitely the best course of action and by the first meeting in September Amira would have a school assigned! I asked what if I didn't agree with the school they chose? I really don't want her that far away! Amira does not travel well and during rush hour there in the morning and on her way home would be an hour at least each way! He told me I could always appeal the decision when it was made in September, however, this would delay the process further, appeals can take a further 26weeks!
I hung up and as the information sunk in, I am speechless! I told my dad and my Aunt what had been said. My aunt is 70+ and was furious! 'That is not right! Get on the phone to the papers, ring the radios they cannot do this'. My dad is just so angry at the system, that his granddaughter is left out and let down. He and my whole family have paid into this system for years, all worked never claimed benefits and look what you get! NOTHING! My dad saw the disappointment in my face and didn't push the subject as I think he knew I would explode! When my mum and sister came in I told them too! They too don't understand how this can be right!
I am now at a complete loss! Amira is now only sleeping for about 30-60 mins at a time at night sometimes having more short sleeps throughout the day! She has no structure or real stimulation and doesn't like to leave the house! Tariq is getting later and later for school each morning as he doesn't understand why his sister is not coming too! Fighting with me to take her too. He loves school but doesn't understand why he goes and she doesn't. Amira doesn't fight as much right now and as she swings on her playground in the garden (my dad has built what looks like a park in the garden to keep her busy!) Amira will spell words for me and always asks me to count her down from 10-1 blast off and push her to the moon! M-O-O-N!
My mum has had confirmation of her hospital date and gets her foot operated on mid June and we are waiting for my dads date for his surgery on his knee too! That will be difficult to cope with but as always with our family we will just get on and cope! Some how!
I have now given up hope, resigning to the fact that in the councils eyes my daughter is just a number, they as well as the MP's, Councillors, Mayor and The Press simply don't care! It doesn't benefit them. The elections are over and the story is obviously not news worthy! If I was a celebrity then I'm sure it would be different. Although I'm sure they didn't have the issue of getting their child into the right school! It is amazing what money can buy! Amira is just a number in the system and will be dealt with when they see fit, in their time! Regardless of what this is doing to her. Amira has already been out of school for 5 weeks! It will be 19 weeks before the Sept term starts and she won't be starting straight away! That is nearly 6 months my child is expected to be excluded from school! If this isn't discrimination I don't know what is! I have even looked into the possibility of moving home into the NT Council catchment! Ha! To start I probably could not cope alone, second I most definitely couldn't afford it, unless I gave up work and sponged off the Goverment! (I really don't want to do that I love my job, it gives me a sense of worth and an adult environment I can escape to!) third, get this, my mam and dads house is too big, I couldn't get a council house! I could be sneaky and just put down a relatives address that lives in NT Council district? Nope, I couldn't firstly, I am not very good at lying I have telltale grin/smirk, secondly, the whole process would have to started all over again! Third, when Amira started whichever school they pick the escort/transport people collect from that address and take them to school! See I have thought it through! Not like me at all!!
I am now completely lost. Do I get in touch with citizens advice/solicitor?? What could they do anyway? Do I sue the Council as I have been advised to, for discrimination, and see how quickly they get her into a school then? Do I lobby the Houses of Parliment? Try the press again? Contact the MP again? I truly believed that the council and MP's actually worked for us, the people! I thought we paid our taxes for them to look after our schools and health! I was obviously mis-informed or very naive!
Please Help Me! What do I do now?
Tuesday, 29 May 2012
Getting somewhere
Well time is almost on us now for Amira's case to be put before the inclusion panel. No word yet from MP or Mayor! Yet we have over 111 like on FB and over 1500 page views world wide! I will keep you all posted of anything further! The only thing worth noting is that Amira's sleep is now worse as she has nothing at all to keep her stimulated through the day!
Sunday, 20 May 2012
Me
Me:
I suppose I best tell you a little bit more about how this has made me feel too.
You can pretty much tell from this blog so far that this is a difficult journey. The day I found out I was pregnant I had mixed feelings. I wasn't married, the first in my family to have a child out of wedlock, my partner was a black Muslim too! Never one to do things by half am I?
I had been told at 17 that I would never have kids as I had ovarian cysts and had them and an ovary removed and the other was heavily pitted and scarred! I went on to have several operations on my womb and bits, a cervical cancer scare, and enodometriosis was another particular problem I had too. Never believing I could have kids I always stayed at a distance and was happy to be the fun auntie and completely spoilt my nephew, bought him everything I could think of, played games and adored him but never changed a nappy! Blurgh! I remember having to once and was physically ill!!! So, after 18 home pregnancy tests I finally went to my GP and after the first blood test said no, the second said yes! I was delighted yet terrified! Friends I had at the time were all natural mothers, destined to be from a young age. They wouldn't have a clue how I felt...so I just withdrew.
I had a awful pregnancy with Amira, bad SPD and very low blood pressure! I eventually went on the sick from work as I kept collapsing! Practically everyday! I was told not to drive, to take it easy! I did far too much of that and gained so much weight it was pathetic! I had numerous scans when pregnant as they thought Amira may have had Downs Syndrome and also have a possible bowel problem. I wouldn't know for either until the birth! It started to drive a wedge between me and my partner, he lost his job at the early stages of my pregnancy too so it was all down to me. I assembled the cot, bought all the clothes went to all the appointements alone, or with my mum. I even insisted on my mum to be at the labour as I knew he didnt know and wasnt really interested in any of the pregnancy. This really hurt but, when she was born perfect I was elated! Like any other new mum struggled at first, I wrapped her up in cotton wool and never put her down! She was truly spoilt rotten. The first grand-daughter for my parents too. My ex has no family in this country and I clung to mine for guidance! Trust me, he really didn't have a clue, he never once did a night-time feed and never ever changed a nappy. He would say old fashioned, I would say otherwise! For lots of reasons, I was pregnant with Tariq within 9 months, not even having Amira into a routine yet! I knew this was going to be hard! I had said all through my pregnancies that I was going to be a tough mummy, strict routines, especially for bed! AS IF! You have to laugh though, right?!
I was fortunate that my Nana got to meet and hold my daughter before she died. I was very close to her and a lot of family members have said how much I am like her! She always had her hair styled like the Queen and was a very stoic woman! My other Nana was also a very strong woman and had battled all of her life! I have some very big shoes to walk in! My mum managed to do it so well and my sister can do it! They were all fantastic role models and you would never have heard or hear any one of them complaining if they were in my place. Well, one nana would never approve of me writing this, believing "you keep your own council!" After she died when Amira was 6wks old, my Grandad would spoil Amira rotten, buying her new dresses and coats etc on a regular basis. However, he got seriously ill, when Amira was 2yrs old and Tariq was 6 months, I left work to look after him and my mum and dad helped me financially whilst my sister helped me with my kids. Within 6 months he lost his battle and I regressed even further.
I knew it was time to make a change I lost loads weight, my skin was a lot better (I have bad Psoriasis too) and I found a job in a stress free environment! LOL! No such thing is there! I love what I do though and I am very fortunate to have a very understanding employer. I also have some of the best work mates anyone could ask for. I have had to leave work early so many times, it is ridiculous.
I would take the kids to nursery and shoot straight off to work. I would cry all the way to work as I hated leaving Amira when she cried. I would wipe my face before I got there and have a stash of make up in the car to re-apply before I got out, have a quick tab and plant the smile on before I walked through the doors. After all my job was to help people with real problems, to raise money for their causes. The fact Amira only slept for 2 hrs and had a few "issues" was nothing in comparison to what some people were going through. I raise a lot of money for several charities and feel very proud of myself and have a great sense of achievement!
I remember helping one particular charity and spoke to the lady running it, the charity was for children with special needs. She would tell me about why she was involved and always invite me, Amira & Tariq down to join the group. I always wanted to go but felt like a fraud. I had no diagnosis, how could I go and talk to these ladies who had a diagnosis for their children. What if Amira really hurt one of their kids? I work for a company that is raising money for them how can I then go along and use their facility too? I eventually got over it and I took Amira along to their Christmas party and we didn't even get through the door. They had a pantomime on and Amira ran screaming through the corridors as it was too loud! How embarrassing!! She then threw a hissy fit because she wanted to go and I was so embarrassed that the ladies running it could see my daughter biting, kicking and scratching me. Cupping her hands over ears and screaming. They seemed to take it in their stride. We left immediately, I haven't dared to go back yet. Strangely, even though I now have Amira's diagnosis and I have been recommended to contact them on various occasions I still haven't done so. Mixing personal and business?? I would hate to think that anyone would think I favoured one charity over another.
I often get asked why my eyes are so red at work and have an excuse already prepared. Slept in my contact lenses! Slept!!!! That would be nice! If only they knew! I wore more make up than a drag queen just to look half human! Those that knew and said " I don't know how you do it!" my prepared answer was always the same! " you get used to it!" in a way that is true, but some days it catches up with you. The alternative answer is "there a lot of people that are so much worse off!" this is definitely true, somedays it doesn't feel like it though. Most days you just feel very alone and very down. As weeks turned to months, months have changed to years! Still no improvement, I lived in hope when friends would say to wait until full time school, that will tire her out and she will sleep. I lived in fear of her starting school. What if she was as bad there? I expressed all the concern to the nursery and HV and to the school when they came out to visit her. They said it would be fine. That set my mind at rest, if only for a brief time. 3 days into school and I was called in! I knew instantly what this was for. After speaking to the SENCO I broke my heart and begged for help. Amira was not allowed to stay full time at school and was to start 15 mins before the other children and finish at the same time of nursery class. Mondays and Tuesdays were the worst. I felt even more alone as I never got to meet the parents properly. Maybe if I had of they would have been able to talk to me instead of making complaints to the school! Everyday I would carry Amira in kicking and screaming and do the walk of shame coming out as she was kicking off in the class room. I would usually have been crying so would put my head down and avoid eye contact, walking as quickly as I could. Amira is always very unpredictable and on some days could be a "delight" teachers would tell me! Still not at a level anywhere near her peers but would maybe do a little bit of work and sit nicely in assembly, even playing well with others. The first time Amira was given "Star of the Day" my heart burst with pride! It made me full of hope that there may be a chance of change! I was wrong, as I was told next day from school that she hadn't been perfect at all but they were trying to reward the good behaviour she did have and teach the other children that Amira was not the "Naughty Girl" as she had now been labelled! That snapped another little bit of my heart right there.
There are nights I get so annoyed and start shouting "lie down" "get to bed!" " what's wrong with you!" I feel incredibly guilty. I went through a particularly bad time and everything was getting on top of me and I even went to leave my job. Handing my notice in, they kept delaying putting the ad up for my job and a 4 week turned into 4 month and I came out the other end. During that time my skin broke out to the extreme and I cried every night! Losing my temper at the slightest thing, I would cry when no one was looking and my smoking and comfort eating increased 10 fold. I have no social life. I don't go out. I did with new friends from work, but couldn't really relax as I knew when I went home I would have to take over and look after Amira! I knew she would still be up when I got in! Friends could get mortal drunk and fall home. I didn't have that luxury and never let myself have more than a few! I usually drove or organised an event and would host all night! Easy option really, and a perfect excuse why I couldn't drink!
When Amira went for her first grommets at 18 months I wept outside on the phone to my sister and as they wheeled her back from surgery she was standing up on the bed screaming the whole ward down and all I could do was hold her and try to soothe her. I thought that was the worst feeling. How wrong was I! Next we did a sleep study and was admitted to a children's ward. We went in for 6:30pm and as I filled out the paper work and we were shown to our room I tried the best I could to explain the uniqueness that is Amira. I tried to explain that Amira didn't sleep. I don't think they really believed me, the night shift nurses certainly did by the next morning. I was still walking around the hospital inside and out at 4 am! A new environment to go to sleep, I knew it was going to be difficult! When we arrived I carried her straight upstairs to the ward and they started strapping her up they got the chest straps on but as they tried to put the nasal tube on Amira started to wake up! Amira had already been awake 36 hrs at that point! I was exhausted! They decided against the nasal tube. I fell asleep and when I woke up at 7 Amira was not in the room! I panicked and ran straight out into the ward half dressed. Amira had been up since 5:30 and playing with one of the nurses in the play room. They said they thought I needed the sleep. They were right! We quickly dressed and before breakfast I took Amira home. The next time we were scheduled to go to hospital was for her adenoids and tonsils out and some new grommets put in, for weeks before I gave Amira a hospital gown, started tying her hair up away from her ears and bought her a peppa pig hospital bag complete with bandages, stethoscope, syringe (she knew what that was for, administering medicine!!) and a variety of other bits! I hoped this would help her adjust to staying overnight! I brought in pillows, duvets etc from home and loads of her toys to settle her down she had her iPod and my iPhone and I brought chargers just in case! After I finally got her changed, she refused the gown, PJs instead, we walked down to theatre. They gave Amira the gas and she went limp in my arms. I placed her on the cold hospital trolly, gave her a kiss and walked away told to come back in 1hr. Go get something to eat they said! When I walked away I started sobbing, tears streaming down my face. I cried because I knew this was the last medical hope I had to fix what I thought was a medical problem! I prayed to every God out there! Please let this work! Two weeks before I had seen Amira's peadiatrician for the first time and Amira had been up for 2 days prior to his appt she fell asleep in my arms waiting to see him! When I spoke to him he seemed to understand and prescribed me melatonin as the phenagen the GP had given me did nothing but keep her awake longer and even more hyper! I had to go back in 3 months after her surgery.
Whilst she was being operated on I rang her dad. I didn't want him there before as I knew if she saw him she would know something was up! As I took my phone out there was a message to say her was already there. Not one to show emotion at all let alone in public he instructed me to wipe my face and calm down. He wasn't being cold although I thought that at the time. I now understand it is just his way of coping with things. He failed to acknowledge the importance of the operation. Again his coping strategy. All the way through he has struggled to understand what is happening and waits for an explanation from me and is happy for me to do everything. He says he is sure I am doing the right thing. Great confidence boost but I really needed some support and maybe someone else to take over the calls whilst I looked after Amira or vice versa. Never mind, he tried and I am learning to stop blaming their dad for not helping as I never let him from the beginning I just took over. Only occasionally asking for help. I could never question that he loves his kids, it's just the priority list he has and our place on it.
Anyway, back on point, when Amira came round this time the nurses pulled me straight into the room as Amira was awake already and she had pulled her tubes out! There was blood all over the sheets and floor and she grabbed hold of me so tightly, screaming and crying, terrified. All I could do was hold her and soothe her once more. She finally settled after a shot of something and we were taken back to the ward after waiting in recovery for 4 hrs. Whilst there I saw a small child being resuscitated and luckily brought back to the ward, I was just thankful that it wasn't us! Amira was expected to eat or she wouldn't be going home! She refused their food and drink that night and next morning! I knew she wouldn't eat what they asked her too. I was told to force the medicine in and had nurses pinning her down as we tried to get it in! I was constantly being told you must get it in to her. I explained that I usually put her meds in her drinks so she doesn't realize but they said it had to be administered in one go! Scratchy foods like crisps would not usually be an issue but Amira didn't want to do things on their terms, only her own! Eventually after nearly 48hrs in hospital, Amira ate a bag of crisps and they were satisfied to let her come home. I had sat all night in the chair beside her just in case she tried to do a runner again. She did 4 times through the night. The nurses looked at me like I was such a bad mum. Other children were trying to sleep. I did know that! I was doing my best!
Amira got a lot of bugs in her first year of school and I freely admit I kept her off at the least thing towards the end. I didn't want to force her to go to school when she already hated it so much. I knew she had already left scars on teachers and children in her class. It could only get worse. What if she seriously hurt someone or got out of their eyeline and ran off? Amira could reach all of their locks I had seen it first hand. Amira also had no concept of danger, I and several others had seen her run straight out of school, out the gate, and across a main road! Cars beeping and me screaming. I had given chase with Tariq in my arms but she was too quick for me. Tariq however was still sent regardless to school as he would cry if he missed a day! He was covered head to toe in chicken pox and still be crying to go in! True what they say "you never get 2 alike!"
As weeks progressed I knew Amira had not been "fixed" yes her snoring had stopped but that was it!
The autistic assessment came and I thought Amira had behaved very well! To the point that I thought, bloody typical!! When you want a professional to see her at her worst she behaves really well. Next, peadiatrician appointment a few days later, she was really good for him too. She played with his nursery nurse on 1:1 and loved all the attention. He made me feel like it was the school not teaching her as she needed. If she had 1:1 Amira would be fine he couldn't see a problem! More hope for me. I then started fighting for 1:1! Ringing every dept I could to get it arranged. I don't know of me getting on my little soap box ever did help get it but it felt like it. The autistic assessment diagnosis was supposed to be back to me within 2 weeks to give me the results I rang and rang getting the run around every time, finally after the full 8 weeks allowed they came back with their diagnosis of Autism & ADHD, my life stopped. I thought after how well she had behaved and the peadiatrician telling me everything was fine that they would say I was nuts! Amira was fine! I began in un-picking all the images I had built up for her future! Some one said to me it was like a bereavement process, although I think that is a bit much I can see where she was coming from. I was asked if they wanted me to contact any family member so they can explain it to them! I told them I needed it explained to me first!
1, Is there a cure? A. No
2, Will she get better? A. Not likely although with the right environment things may improve.(Hence why I am fighting so hard for the right school)
3, What will happen if I died? A. Amira will always need assisted living and she would be taken care of by state funding! (I literally couldn't speak!)
4, Will she ever understand? A. Probably not, the fact Amira talks is a plus point and they can build on that.
5, Will she ever have children? A. Who knows what the future brings but it's unlikely Amira could ever give consent!
6, How? Why? What did i do wrong? A. We don't know and nothing!
The questions just couldn't form in my head. Since then I have built practically a book of more questions that I and Dr Google are working through.
Life just isn't the same since I found out. Amira is no different from the day before, to the day after her diagnosis. I had already had her removed from school a few days prior to it anyway!
But, somehow I had convinced my self that they would say yes she has ASD but only slightly and she may need 1:1 full time or even perhaps an ARC school for a short while but would eventually get back to mainstream. I think all along I have lived in denial and just wanted to see the best. Although I always accepted Amiras difference I thought her strengths out shone them. The CAMHS team that had run the diagnostic report were very nice but nothing can prepare you for what you hear. I sat in my car and cried so hard my face was bright red and no noise would come out of my mouth. I sobbed for a good half hour and then rang her dad to tell him too. He knew from my voice and wanted answers I couldn't give. He still is looking for answers and I don't know who can tell him them. He is still yet to tell his family. I drove home and collapsed into a puddle of sobs when I saw my mam and dad! They told my sister and passed the message round my family. The day I told my cousin she came up that night and just give me a hug. For years she had offered to look after Amira so I could have a break, some time to myself. She is a very accomplished mum and I always knew she would be in safe hands but I have always been terrible at letting go of control. Always not asking for help and insisting I can do it myself. How many other mums have to have help??? I saw it as a sign of weakness. I was wrong! There are mornings when I have left the house without brushing my teeth never mind my hair! I forget things, I shout, I bribe my children, I allow them to watch too much tv, my children don't have a bed time routine and my daughter does dictate a lot of what we do. But, we are coping/surviving everyday as it comes. I want my children to be happy, that is all, not asking too much! Is it?
The right school could be a turning point for Amira! That is why I am fighting so hard. Pouring my heart and soul out to be viewed by others that may hold some insight. Help get my daughter the education she needs! Know of any treatment available that may help! Understand that although we feel alone we are not! There are so many mums like me out there desperate for help and being turned away by GP's or HV's, being passed from dept to dept, being made to feel like we are the ones that have a problem. If you knew how many times I have been suggested to go on anti depressants by medical professionals. Do they not realise that pills are not the answer. Getting my daughter the help she needs is all I need.
I read a poem that says a lot about how it is, there is no author listed but the person who wrote it truly knows how I feel. It goes like this:
To my Autistic Child
Where are you this moment,
My darling young child.
Where have your thoughts taken you?
Where are you this moment,
My darling young angel
Is there something you need me to do?
Is there a way I can touch you
Is there a sign I should know
Is there a path I could follow
That would help you to learn and to grow!
If I could reach down inside you
If I could cuddle your heart
If I could take the mystery away
Would you know we never will part?
Where are you this moment my child
Where are your thoughts taking you?
Please know I am right here beside you
No matter what life takes us through!
I suppose I best tell you a little bit more about how this has made me feel too.
You can pretty much tell from this blog so far that this is a difficult journey. The day I found out I was pregnant I had mixed feelings. I wasn't married, the first in my family to have a child out of wedlock, my partner was a black Muslim too! Never one to do things by half am I?
I had been told at 17 that I would never have kids as I had ovarian cysts and had them and an ovary removed and the other was heavily pitted and scarred! I went on to have several operations on my womb and bits, a cervical cancer scare, and enodometriosis was another particular problem I had too. Never believing I could have kids I always stayed at a distance and was happy to be the fun auntie and completely spoilt my nephew, bought him everything I could think of, played games and adored him but never changed a nappy! Blurgh! I remember having to once and was physically ill!!! So, after 18 home pregnancy tests I finally went to my GP and after the first blood test said no, the second said yes! I was delighted yet terrified! Friends I had at the time were all natural mothers, destined to be from a young age. They wouldn't have a clue how I felt...so I just withdrew.
I had a awful pregnancy with Amira, bad SPD and very low blood pressure! I eventually went on the sick from work as I kept collapsing! Practically everyday! I was told not to drive, to take it easy! I did far too much of that and gained so much weight it was pathetic! I had numerous scans when pregnant as they thought Amira may have had Downs Syndrome and also have a possible bowel problem. I wouldn't know for either until the birth! It started to drive a wedge between me and my partner, he lost his job at the early stages of my pregnancy too so it was all down to me. I assembled the cot, bought all the clothes went to all the appointements alone, or with my mum. I even insisted on my mum to be at the labour as I knew he didnt know and wasnt really interested in any of the pregnancy. This really hurt but, when she was born perfect I was elated! Like any other new mum struggled at first, I wrapped her up in cotton wool and never put her down! She was truly spoilt rotten. The first grand-daughter for my parents too. My ex has no family in this country and I clung to mine for guidance! Trust me, he really didn't have a clue, he never once did a night-time feed and never ever changed a nappy. He would say old fashioned, I would say otherwise! For lots of reasons, I was pregnant with Tariq within 9 months, not even having Amira into a routine yet! I knew this was going to be hard! I had said all through my pregnancies that I was going to be a tough mummy, strict routines, especially for bed! AS IF! You have to laugh though, right?!
I was fortunate that my Nana got to meet and hold my daughter before she died. I was very close to her and a lot of family members have said how much I am like her! She always had her hair styled like the Queen and was a very stoic woman! My other Nana was also a very strong woman and had battled all of her life! I have some very big shoes to walk in! My mum managed to do it so well and my sister can do it! They were all fantastic role models and you would never have heard or hear any one of them complaining if they were in my place. Well, one nana would never approve of me writing this, believing "you keep your own council!" After she died when Amira was 6wks old, my Grandad would spoil Amira rotten, buying her new dresses and coats etc on a regular basis. However, he got seriously ill, when Amira was 2yrs old and Tariq was 6 months, I left work to look after him and my mum and dad helped me financially whilst my sister helped me with my kids. Within 6 months he lost his battle and I regressed even further.
I knew it was time to make a change I lost loads weight, my skin was a lot better (I have bad Psoriasis too) and I found a job in a stress free environment! LOL! No such thing is there! I love what I do though and I am very fortunate to have a very understanding employer. I also have some of the best work mates anyone could ask for. I have had to leave work early so many times, it is ridiculous.
I would take the kids to nursery and shoot straight off to work. I would cry all the way to work as I hated leaving Amira when she cried. I would wipe my face before I got there and have a stash of make up in the car to re-apply before I got out, have a quick tab and plant the smile on before I walked through the doors. After all my job was to help people with real problems, to raise money for their causes. The fact Amira only slept for 2 hrs and had a few "issues" was nothing in comparison to what some people were going through. I raise a lot of money for several charities and feel very proud of myself and have a great sense of achievement!
I remember helping one particular charity and spoke to the lady running it, the charity was for children with special needs. She would tell me about why she was involved and always invite me, Amira & Tariq down to join the group. I always wanted to go but felt like a fraud. I had no diagnosis, how could I go and talk to these ladies who had a diagnosis for their children. What if Amira really hurt one of their kids? I work for a company that is raising money for them how can I then go along and use their facility too? I eventually got over it and I took Amira along to their Christmas party and we didn't even get through the door. They had a pantomime on and Amira ran screaming through the corridors as it was too loud! How embarrassing!! She then threw a hissy fit because she wanted to go and I was so embarrassed that the ladies running it could see my daughter biting, kicking and scratching me. Cupping her hands over ears and screaming. They seemed to take it in their stride. We left immediately, I haven't dared to go back yet. Strangely, even though I now have Amira's diagnosis and I have been recommended to contact them on various occasions I still haven't done so. Mixing personal and business?? I would hate to think that anyone would think I favoured one charity over another.
I often get asked why my eyes are so red at work and have an excuse already prepared. Slept in my contact lenses! Slept!!!! That would be nice! If only they knew! I wore more make up than a drag queen just to look half human! Those that knew and said " I don't know how you do it!" my prepared answer was always the same! " you get used to it!" in a way that is true, but some days it catches up with you. The alternative answer is "there a lot of people that are so much worse off!" this is definitely true, somedays it doesn't feel like it though. Most days you just feel very alone and very down. As weeks turned to months, months have changed to years! Still no improvement, I lived in hope when friends would say to wait until full time school, that will tire her out and she will sleep. I lived in fear of her starting school. What if she was as bad there? I expressed all the concern to the nursery and HV and to the school when they came out to visit her. They said it would be fine. That set my mind at rest, if only for a brief time. 3 days into school and I was called in! I knew instantly what this was for. After speaking to the SENCO I broke my heart and begged for help. Amira was not allowed to stay full time at school and was to start 15 mins before the other children and finish at the same time of nursery class. Mondays and Tuesdays were the worst. I felt even more alone as I never got to meet the parents properly. Maybe if I had of they would have been able to talk to me instead of making complaints to the school! Everyday I would carry Amira in kicking and screaming and do the walk of shame coming out as she was kicking off in the class room. I would usually have been crying so would put my head down and avoid eye contact, walking as quickly as I could. Amira is always very unpredictable and on some days could be a "delight" teachers would tell me! Still not at a level anywhere near her peers but would maybe do a little bit of work and sit nicely in assembly, even playing well with others. The first time Amira was given "Star of the Day" my heart burst with pride! It made me full of hope that there may be a chance of change! I was wrong, as I was told next day from school that she hadn't been perfect at all but they were trying to reward the good behaviour she did have and teach the other children that Amira was not the "Naughty Girl" as she had now been labelled! That snapped another little bit of my heart right there.
There are nights I get so annoyed and start shouting "lie down" "get to bed!" " what's wrong with you!" I feel incredibly guilty. I went through a particularly bad time and everything was getting on top of me and I even went to leave my job. Handing my notice in, they kept delaying putting the ad up for my job and a 4 week turned into 4 month and I came out the other end. During that time my skin broke out to the extreme and I cried every night! Losing my temper at the slightest thing, I would cry when no one was looking and my smoking and comfort eating increased 10 fold. I have no social life. I don't go out. I did with new friends from work, but couldn't really relax as I knew when I went home I would have to take over and look after Amira! I knew she would still be up when I got in! Friends could get mortal drunk and fall home. I didn't have that luxury and never let myself have more than a few! I usually drove or organised an event and would host all night! Easy option really, and a perfect excuse why I couldn't drink!
When Amira went for her first grommets at 18 months I wept outside on the phone to my sister and as they wheeled her back from surgery she was standing up on the bed screaming the whole ward down and all I could do was hold her and try to soothe her. I thought that was the worst feeling. How wrong was I! Next we did a sleep study and was admitted to a children's ward. We went in for 6:30pm and as I filled out the paper work and we were shown to our room I tried the best I could to explain the uniqueness that is Amira. I tried to explain that Amira didn't sleep. I don't think they really believed me, the night shift nurses certainly did by the next morning. I was still walking around the hospital inside and out at 4 am! A new environment to go to sleep, I knew it was going to be difficult! When we arrived I carried her straight upstairs to the ward and they started strapping her up they got the chest straps on but as they tried to put the nasal tube on Amira started to wake up! Amira had already been awake 36 hrs at that point! I was exhausted! They decided against the nasal tube. I fell asleep and when I woke up at 7 Amira was not in the room! I panicked and ran straight out into the ward half dressed. Amira had been up since 5:30 and playing with one of the nurses in the play room. They said they thought I needed the sleep. They were right! We quickly dressed and before breakfast I took Amira home. The next time we were scheduled to go to hospital was for her adenoids and tonsils out and some new grommets put in, for weeks before I gave Amira a hospital gown, started tying her hair up away from her ears and bought her a peppa pig hospital bag complete with bandages, stethoscope, syringe (she knew what that was for, administering medicine!!) and a variety of other bits! I hoped this would help her adjust to staying overnight! I brought in pillows, duvets etc from home and loads of her toys to settle her down she had her iPod and my iPhone and I brought chargers just in case! After I finally got her changed, she refused the gown, PJs instead, we walked down to theatre. They gave Amira the gas and she went limp in my arms. I placed her on the cold hospital trolly, gave her a kiss and walked away told to come back in 1hr. Go get something to eat they said! When I walked away I started sobbing, tears streaming down my face. I cried because I knew this was the last medical hope I had to fix what I thought was a medical problem! I prayed to every God out there! Please let this work! Two weeks before I had seen Amira's peadiatrician for the first time and Amira had been up for 2 days prior to his appt she fell asleep in my arms waiting to see him! When I spoke to him he seemed to understand and prescribed me melatonin as the phenagen the GP had given me did nothing but keep her awake longer and even more hyper! I had to go back in 3 months after her surgery.
Whilst she was being operated on I rang her dad. I didn't want him there before as I knew if she saw him she would know something was up! As I took my phone out there was a message to say her was already there. Not one to show emotion at all let alone in public he instructed me to wipe my face and calm down. He wasn't being cold although I thought that at the time. I now understand it is just his way of coping with things. He failed to acknowledge the importance of the operation. Again his coping strategy. All the way through he has struggled to understand what is happening and waits for an explanation from me and is happy for me to do everything. He says he is sure I am doing the right thing. Great confidence boost but I really needed some support and maybe someone else to take over the calls whilst I looked after Amira or vice versa. Never mind, he tried and I am learning to stop blaming their dad for not helping as I never let him from the beginning I just took over. Only occasionally asking for help. I could never question that he loves his kids, it's just the priority list he has and our place on it.
Anyway, back on point, when Amira came round this time the nurses pulled me straight into the room as Amira was awake already and she had pulled her tubes out! There was blood all over the sheets and floor and she grabbed hold of me so tightly, screaming and crying, terrified. All I could do was hold her and soothe her once more. She finally settled after a shot of something and we were taken back to the ward after waiting in recovery for 4 hrs. Whilst there I saw a small child being resuscitated and luckily brought back to the ward, I was just thankful that it wasn't us! Amira was expected to eat or she wouldn't be going home! She refused their food and drink that night and next morning! I knew she wouldn't eat what they asked her too. I was told to force the medicine in and had nurses pinning her down as we tried to get it in! I was constantly being told you must get it in to her. I explained that I usually put her meds in her drinks so she doesn't realize but they said it had to be administered in one go! Scratchy foods like crisps would not usually be an issue but Amira didn't want to do things on their terms, only her own! Eventually after nearly 48hrs in hospital, Amira ate a bag of crisps and they were satisfied to let her come home. I had sat all night in the chair beside her just in case she tried to do a runner again. She did 4 times through the night. The nurses looked at me like I was such a bad mum. Other children were trying to sleep. I did know that! I was doing my best!
Amira got a lot of bugs in her first year of school and I freely admit I kept her off at the least thing towards the end. I didn't want to force her to go to school when she already hated it so much. I knew she had already left scars on teachers and children in her class. It could only get worse. What if she seriously hurt someone or got out of their eyeline and ran off? Amira could reach all of their locks I had seen it first hand. Amira also had no concept of danger, I and several others had seen her run straight out of school, out the gate, and across a main road! Cars beeping and me screaming. I had given chase with Tariq in my arms but she was too quick for me. Tariq however was still sent regardless to school as he would cry if he missed a day! He was covered head to toe in chicken pox and still be crying to go in! True what they say "you never get 2 alike!"
As weeks progressed I knew Amira had not been "fixed" yes her snoring had stopped but that was it!
The autistic assessment came and I thought Amira had behaved very well! To the point that I thought, bloody typical!! When you want a professional to see her at her worst she behaves really well. Next, peadiatrician appointment a few days later, she was really good for him too. She played with his nursery nurse on 1:1 and loved all the attention. He made me feel like it was the school not teaching her as she needed. If she had 1:1 Amira would be fine he couldn't see a problem! More hope for me. I then started fighting for 1:1! Ringing every dept I could to get it arranged. I don't know of me getting on my little soap box ever did help get it but it felt like it. The autistic assessment diagnosis was supposed to be back to me within 2 weeks to give me the results I rang and rang getting the run around every time, finally after the full 8 weeks allowed they came back with their diagnosis of Autism & ADHD, my life stopped. I thought after how well she had behaved and the peadiatrician telling me everything was fine that they would say I was nuts! Amira was fine! I began in un-picking all the images I had built up for her future! Some one said to me it was like a bereavement process, although I think that is a bit much I can see where she was coming from. I was asked if they wanted me to contact any family member so they can explain it to them! I told them I needed it explained to me first!
1, Is there a cure? A. No
2, Will she get better? A. Not likely although with the right environment things may improve.(Hence why I am fighting so hard for the right school)
3, What will happen if I died? A. Amira will always need assisted living and she would be taken care of by state funding! (I literally couldn't speak!)
4, Will she ever understand? A. Probably not, the fact Amira talks is a plus point and they can build on that.
5, Will she ever have children? A. Who knows what the future brings but it's unlikely Amira could ever give consent!
6, How? Why? What did i do wrong? A. We don't know and nothing!
The questions just couldn't form in my head. Since then I have built practically a book of more questions that I and Dr Google are working through.
Life just isn't the same since I found out. Amira is no different from the day before, to the day after her diagnosis. I had already had her removed from school a few days prior to it anyway!
But, somehow I had convinced my self that they would say yes she has ASD but only slightly and she may need 1:1 full time or even perhaps an ARC school for a short while but would eventually get back to mainstream. I think all along I have lived in denial and just wanted to see the best. Although I always accepted Amiras difference I thought her strengths out shone them. The CAMHS team that had run the diagnostic report were very nice but nothing can prepare you for what you hear. I sat in my car and cried so hard my face was bright red and no noise would come out of my mouth. I sobbed for a good half hour and then rang her dad to tell him too. He knew from my voice and wanted answers I couldn't give. He still is looking for answers and I don't know who can tell him them. He is still yet to tell his family. I drove home and collapsed into a puddle of sobs when I saw my mam and dad! They told my sister and passed the message round my family. The day I told my cousin she came up that night and just give me a hug. For years she had offered to look after Amira so I could have a break, some time to myself. She is a very accomplished mum and I always knew she would be in safe hands but I have always been terrible at letting go of control. Always not asking for help and insisting I can do it myself. How many other mums have to have help??? I saw it as a sign of weakness. I was wrong! There are mornings when I have left the house without brushing my teeth never mind my hair! I forget things, I shout, I bribe my children, I allow them to watch too much tv, my children don't have a bed time routine and my daughter does dictate a lot of what we do. But, we are coping/surviving everyday as it comes. I want my children to be happy, that is all, not asking too much! Is it?
The right school could be a turning point for Amira! That is why I am fighting so hard. Pouring my heart and soul out to be viewed by others that may hold some insight. Help get my daughter the education she needs! Know of any treatment available that may help! Understand that although we feel alone we are not! There are so many mums like me out there desperate for help and being turned away by GP's or HV's, being passed from dept to dept, being made to feel like we are the ones that have a problem. If you knew how many times I have been suggested to go on anti depressants by medical professionals. Do they not realise that pills are not the answer. Getting my daughter the help she needs is all I need.
I read a poem that says a lot about how it is, there is no author listed but the person who wrote it truly knows how I feel. It goes like this:
To my Autistic Child
Where are you this moment,
My darling young child.
Where have your thoughts taken you?
Where are you this moment,
My darling young angel
Is there something you need me to do?
Is there a way I can touch you
Is there a sign I should know
Is there a path I could follow
That would help you to learn and to grow!
If I could reach down inside you
If I could cuddle your heart
If I could take the mystery away
Would you know we never will part?
Where are you this moment my child
Where are your thoughts taking you?
Please know I am right here beside you
No matter what life takes us through!
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