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!
