Our worse ever meltdown & coping with little sleep

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I was going through documents I have stored on my Mac and came across this. I’m unsure of the reasons I wrote it, though I think it was meant as a guest post concerning “Meltdowns and a lack of sleep” I don’t even think I sent it to whoever was meant to feature it, so I’ve decided, instead of cluttering up my Mac, I’ll share it here with my readers.

The post comes in two sections, “Worse ever Meltdown” & “How I deal with the lack of sleep”

Our Worst Ever Tantrum

I have three children, a daughter of 9 and two boys! my toddler is 2 and his brother, my eldest is 11 years of age and has a diagnosis of Aspergers (a form of autism that results in impaired communication and interaction skills) and sensory processing difficulties.

My eldest, AKA Little man, has had more meltdowns than I ever thought possible! His increased anxiety levels and inability to filter out certain sensory stimuli has made meltdowns exhausting for all.

We’ve seen it all! Hitting, swearing, kicking everything and anything, throwing objects, slamming doors, running off and non stop crying! But nothing was to prepare us for that Wednesday evening on the 22nd September 2010. My son had received a high number of exclusions from his then mainstream school. He was taught in isolation, (Kept away from other children like a monster). My child was never allowed to attend school trips or participate in activities, this was lowering his already low self-esteem and I was becoming extremely worried. That evening I received a call from the head-teacher who informed me my child was excluded for the third time that month. I was promptly reminded that the Friday was in-set day (translated that means staff training day!) So, he would be excluded for the trip. He has missed trips for as long as I can remember anyone would think we were used to it! But this one was important he was looking forward to it so, so much because they would be going by coach (transport crazy) It was left for me to break the news and his heart. He didn’t hit me, nor swear, he sat deadly quite for a minute or two, slowly absorbing my words! Then shockingly he stood up and started throwing his entire body into the wall almost knocking himself out in the process. He scratched his own arms till they bleed, he slapped himself in the face over and over again and punched himself in the head while chanting, “I just want to be normal” Some five hours later, and a smashed up bedroom, I found him laid in the middle of the room amongst his destroyed beloved model buses. His eyes were so sore and red, his breathing still heavy that he continued to catch his breath. Yes, I’ve been hit, abused or embarrassed in public. His kept me up the entire night screaming and crying, yet it was defiantly this meltdown that outweighed the rest, It is one that has stuck firmly in my mind… Because for me it was scary to see a little boy, my little boy, react in such a way he could have seriously hurt himself.

Lucky his now in a more understanding school better suited to his overall needs.

Coping with little sleep!

I remember my health visitors promise some 11 or so years ago! She looked me in the eye and said, “I promise you he will soon get into a routine… babies always do”! Yet she lied to me, because that isn’t true is it! Not all babies do! My little man is no longer a baby but a lively 11-year-old boy He has Aspergers (a form of autism) and as soon as he hit three months old, he stopped sleeping! I waited and waited for that routine to come, the one she had promised, after all she was a professional right? Well, here I am, still waiting for that so-called routine!

We all need to sleep in-order to refuel our brains and boost our energy levels. I’ve often stayed awake for nights on end (which wasn’t done by choice)! When my little man does finally sleep, I struggle! Maybe because it’s only a few hours till I should wake for it’s a school day and I fear the attendance officer getting on my back, or maybe because I’m scared I wont wake to care for the children at all. I find I’m touchy and over emotional some days, where others I’m fine, I just get on with things the best way I can! Sleep really does make everything seem better, I just wish my son would believe it and give it a go sometime! I’m no super mummy and more often than not, after a few days awake I just suddenly drop! My eye lids become so heavy as if they have weights hanging from them! Seriously I find my self sleeping as I stand, clean, bath or even board a bus… which really isn’t a great way to be!

Related articles

• Top Three Tips To Get You’re Kids To Sleep (aspergersinfo.wordpress.com)
• Christmas Meltdowns, Supermarket Style (aspergersinfo.wordpress.com)
• A meltdown free Christmas (well almost)! (aspergersinfo.wordpress.com)
• What Lack Of Sleep Can Do (teeceecounsel.wordpress.com)

An emotional rollercoaster

I don’t even know how to begin this blog! There is so much in my head right now, I’m finding it hard to put into words. My emotions are so muddled, I honestly have no idea what lies ahead. I feel I’m on a rollercoaster that I can’t get off. Will it ever stop?

I look at Little man and for a minute I catch him smiling. His looking through the Argos catalogue as it’s almost his birthday. He never asks for things that most children ask for.. We have had a list consisting of batteries, padlocks and electric fly lights in the past. (Fly lights are the things you hang in restaurants. The fly is attracted to the light and ends up pretty much fried on his quest to have a closer look) This year he has his heart set on a trailer that connects to his bike. His plan is to load his sister or baby brother in the back, and then take them for a ride… Sounds sweets I agree, but there is more to it! Of course this trailer will become a bus. He said it will make a perfect bus. “I love it mum look” Yes.. its fair to say I’ve heard this throughout the day. His excited I’ll give him that. Still Its pretty nice to she him this way as these past few days have been challenging. I’m not saying his overly challenging behavioural wise! His been more emotional than anything.

Work we were given for him to do a home (His on another two-day exclusion from school) had him in tears. Maths work was fine but when it came to writing the definition of words that he would need to search for in the dictionary, he was in tears. It seems that dictation is something he really struggles with! After a few minutes I decided this wasn’t going to happen. Why press him on something that was clearly too much for him! I’ve decided to try to solve the problem by creating the same work on a word document so he can do it on the computer. He seemed keen for me to give it a try when suggested.

Late yesterday evening Little man wondered downstairs again in tears! When I asked what was the matter he tells me his head hurts. As is sister has been feeling ill recently, we were out of medicine. Lucky his father was round as he went of to the local supermarket that thankfully closes at midnight. Little man was in a ball on the sofa saying “Please god, please god make it go away” I really do think the last few days must be grating on him, that or his gave himself a headache with all his shouting 🙂 I hate to see any of the children unwell or in pain, its horrible feeling so helpless. Thanks to dad Little man had some medicine and though it didn’t go completely, it took the edge off. We headed off to bed and little man jumped in beside me. We had to make sure the room was in complete darkness (He loves sleeping in complete darkness, but he said this will also help with his head) He must have been so worn out as within a few minutes he was out for the count. Surprised! Very much so! Little man very rarely drops off without running through a few bus routes (Writing this I can hear the faint sound of beeping and the words Elephant & castle station) I couldn’t be his teacher along side all them other children. Hats of to the classroom teacher. Maybe playing teacher was my reason for sleeping so well 🙂

So…. Tuesday Little man will return to school! A reintegration meeting will be held on that morning before he heads back off to class. It’s always difficult for little man to reintegrate back into school, and I have everything crossed it’s better than other times in the past. After the meeting I will then be heading of to the library to hopefully complete my NAS training modules by the given deadline. It seems that lately time isn’t on my side, everything typically happens at once and it just never seems to stop.

As I mention briefly in my last post, the LEA’s Sen panel has informed me the request for the statutory assessment won’t be heard by the panel till the 30th of this month. It just angers me that it’s been delayed! I really can’t see why it wasn’t put in on time for the panel meeting that took place on the 16th (Or there about that date) It’s seems all the reports were sent to the LEA, all but the assess one from the school. I’m puzzled as it was decided the school would submit the assess one back on the 5th of July. This was at least three weeks before the summer holidays.

Mediation date has still not been agreed on by the LEA. I guess they are waiting to see if the Sen panel now decides to go ahead and make a statutory assessment. If this is the case, they do assess, then mediation wont actually be needed. The Sen process is a long slow one, getting any LEA to take notice of your child has to be one of the hardest things I’ve ever had to do. (That and giving birth, though giving birth is a hell of a lot quicker) You hear other parents saying how it isn’t easy and how you should be prepared for one very long process. “YER RIGHT, HOW HARD CAN IT BE?? AFTER ALL MY CHILD IS MAKING ZERO PROGRESS IN HIS CURRENT PLACEMENT. THESE PEOPLE ARE OBLIGATED TO SEE THAT HIS NEEDS ARE MET, RIGHT?” I am now one of them parents who knows that this s**t isn’t easy. So what do we do to get these so-called professionals to listen? Dont look at me for answers, I’m all out!

Well…. Someone did give me an idea! It’s not the first time I’ve heard it or even considered it myself , it’s just an idea I consider to be a tad tricky… Video recording! For us it’s not as easy as one would think. This idea scares the hell out of me. Now with Little mans agreement it’s Ok…But of course a child can act somewhat different in front of a camera they know is there. (He don’t really like being filmed unless it’s him doing the filming, Yes he often wonders of with your iPhone, then holds the phone in front of his face as he tries to rap about buses) Ok so I should hide the camera and somehow hope he doesn’t find it. It would provide some pretty spectacular footage of our wonderful morning routine. Even better how about our early evenings, If his not with his friend his laid out on the stairs screaming abuse at me 😦  Thankfully this don’t always last the night. Oh yes he sometimes settles till bedtime when he then converts into this double-decker bus (194 and 53 at present) So whats my issue? Why don’t I fancy this as a good idea? Well.. Two reasons! Reason one… What mother enjoys spying on her own child? What mother wants to break their childs trust and privacy? (That was one answer not two :)) Second…. Would you wanna be in my shoes when (and I mean when) he finds out? My son hates being watched, unless his acting the clown or doing something he want’s attention for. I only recently discovered that for some children on the spectrum, looking at them can almost seem like you’re trying to look inside them. Little man often complains about his sister looking at him (It don’t help when he see her as his enemy) I can just picture the scene if he was to catch me in the act. He can often go on for hours about something and this would be no exception.

I just feel unless your child, family and mental health have been hung out to dry, you just don’t get anywhere. What do they want, need to see before doing the right thing? They say that the most important thing for any child is a good start in education. Do they only mean this if you’re stopping your child from attending school? Little man isn’t the only one! Millions of children face this battle. Some will come through it Ok, having managed to get some sort of education, others become damaged with rock bottom Low self-esteem with no prospects…

… I’M SORRY BUT I DON’T WANT THAT FOR MY CHILD.