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!