Just one wish

21 Apr

hello readers

So, there’s a few days left of the Easter half-term and as it draws to an end so does my ability to stay calm cool and collective.

I always long for the half-term due to the whole mess that is, ‘Little Man’s Education’, however with him no longer in the mainstream setting that caused him so much confusion and instead receiving an education through a tuition plan applied by a tutor on a one-2-one basis at the local library his been longing to go back. The lack of routine this Easter is driving him loopy. Yes, I try my best to make things predictable but life isn’t always agreeable. What with a string of assessments in preparation for our upcoming tribunal and the fact I’ve been so unwell, resulting in my shorten temper, things have just turned crazy.

His spent much of his time indulging in his ‘Special interest’ by getting stuck into and memorising a stack of bus routes, but come the second week his perched on the edge like some ticking time bomb.

Off course the bomb went bang and so did my head. His been a complete nightmare the entire week!

Will he comply with any request… Hell no! He seems to think the world is plotting against him, yet I’m starting to think it’s me it’s plotting against! His arguing with his sister day and night (yes, kids argue but come to my house and tell me this is normal)! His also disturbingly loud (ask the neighbours) and has trashed the house more then once!

Meltdowns… I know all about meltdowns… Do you? We are not talking tantrums here, are you crazy! This is some hardcore S***, “Excuse me”, but this is something that I his mother will refer to as ‘Torture!’

Unless you’ve been there, lived it and breathed it, you can never begin to understand just what it is I’m rambling on about! It’s not like the ‘terrible twos’ nor is it the ‘boys just being boys’ scenario ! No, it’s the, ‘AUTISM SPECTRUM SCENARIO!’ If I ever need reassurance that such blow-ups are a direct result of his AS then I just look at his eight year old sister and it’s confirmed in a blink!

I can’t fully explain what its like for him! His low tolerance for certain everyday situations that trigger stress, his inability to control his emotions in a more socially acceptable manner! The reason I can’t explain is simple,”I’m not in side his head, I’m on the outside peeking in, just wishing I could fully understand!”

As his mother it’s my wish that I could fully understand what his thinking, what makes him tick! Give me a wish and that’s what I’d wish for, “TO BE INSIDE HIS HEAD”, It’s hard not to become frustrated for I have tried to learn so much about his condition, but not even a masters in autism will ever get me close enough! I’m a parent to a child with Aspergers, I’m not a mother with Aspergers!

Nevertheless there is something I can share with you… What a meltdown is like for me, a parent of a child with Aspergers! I have plenty of experience as I’m sure many of you have! Meltdowns are one of the hardest things I have to deal with in terms of little mans difficulties and although my son has a huge amount of great qualities that make up his personality , I wont pretend like its all Little professors and I don’t believe in the sugar coating approach… Sometimes things are just dam right bloody hard!

The ‘Daddy’ of meltdowns (not like there’s a type) normally drives me to the point of insanity, it causes me to question my own parenting skills and ability to cope with the situation at hand. I’ve quite literally stood on the spot and let out a high pitched scream, fallen to my knees & begged god for a break regardless of my current company, I’ve cried and asked god, “why me?” I’ve even had a full blown panic attack (YES IN THE SUPERMARKET)

Little over the top you think? No, in-fact this description actually does the ‘DADDY MELTDOWN’ no justice. There are no boundaries, no limits in which he knows he shouldn’t push… his impulsiveness that causes a worry inside me that I cannot explain.

Have you ever took you child out and feared them having some kind public tantrum? I have! I do!

But at least now I have learnt to cope… “TO some degree”, at least! I suppose its like anything, it all depends on ones frame of mind at the time! Sometimes I’m super confident and use a number of self-coping skills why trying an array of learnt techniques to discover the underlying issues surrounding his challenging behaviour! Sometimes these ‘ISSUES’ are clear, other times its mind-boggling!

Then there are the times I feel like grabbing my coat and legging it! Running like Forrest Gump in the direction off the unknown, but anything is better then here (Well of course I don’t leg it! But yes the thought does cross my mind)

A meltdown in our house can least an hour, an afternoon, the entire day and night, and sometimes…. A good few days!

Of course we will normally be over the screaming and the smashing things up by this point (Oh yes he loves to beat the hell out of the doors or the staircase) If the meltdown is one lasting over a day, his normally more tearful on day two, he wont let go and feels so wronged. This can be hard as he likes to go on and on about it, ear bashing me all day! He will sit sobbing, telling me I’m the worse mother in the world and how could I be so selfish when I didn’t agree to him having something or another. To some point its like talking to a person who has consumed to much alcohol simply because there’s no reasoning with him!

Of course it’s much better for him to have a meltdown in the safety of the home! Yes, I like it behind close doors too! Who don’t!!! But unless we are happy to confine ourselves to a life of isolation, then we have to deal with it! I was looking through some pictures on my iphone taken during the summer of last year. With every trip (Well, almost) is a picture of little man at the start of a meltdown.

If your out and about and you see a child with an expression like that on his face, “BEWARE HE MAY BLOW!” In all seriousness, seeing a child having a meltdown isn’t something to stick your nose up at, Nor is it your job to judge the child or the parent in that situation! After all… You never know the underlying causes, all you do is contribute to a very stressful situation.

Basically if don’t fancy mum giving you the finger in the supermarket, then keep your eyes on you’re trolly and your nose in your own business!

5 Responses to “Just one wish”

  1. clairelouise82 October 2, 2011 at 5:13 am #

    Hi Kelly

    OK, this I think should be added to the autism/aspergers questioners given during assessments and should be fully considered a symptom of aspergers when going through the process of diagnosis. It was the same for us and many, many others I’ve spoken too.
    Little man before the age of around 8 (his 11 now) was reported to have no issues (behavioural wise) at school. I was considered to be something of a liar or the one with mental health problems by educational welfare officers and staff at school. Senco refused to listen and i even ended up in court twice due to none school attendance when little man was having meltdowns in the mornings or during the nights so many times I feel asleep at 8am having been up the night with him resulting in him missing half a day or what not. His first cahms doctor told me it was AS form day dot (he was 7 then but only just) but the school held back formal diagnosis for for another year and a half. CAMHS started to tell me it cant be AS as he wasn’t doing all the things he done at home in school and children with AS can’t do this! THAT IS A LIE…. THEY CAN AND 99% DO….. IN THE BEGINNING! He got diagnosis in the end age 8 due to my own video diaries, an ados assessment (which is a special play based assessment with Speech & language therapist specialising in Autism, alongside a child physiologist. I then got the most amazing dr who was awesome. Then something happened! He started yr 4 and made some friends (not real friends they just taught him to play clown told him he was cool because he was funny) the reason he was singled out to do randomness like slap a teacher was because he started behaving different at school, he got noticed because he suddenly couldn’t hold it in anymore. He kicked doors, swore, hit children, ran away, throw things and hid in the school so the children wouldn’t see him cry or act emotional. The school didn’t state a thing for months I guess they felt stupid, after all he was an angel in school. In the end they couldn’t cope, they excluded countless times they would let him on trips, tried to permanently exclude him, he was discriminated against, hid from ofsted and taught in isolation. Suddenly home behaviour improved a little (because he was letting out his anger and emotions in school instead of holding onto it). However I thought meltdowns were bad, this was another level altogether as I started the fight against the education system…. I won the discrimination (settled out of tribunal) and I finally got the statement. I managed to bag him a tutor instead of permanent exclusion and his now in the independent special school for kids with autism. His meltdowns are fewer his happier and it’s been worth everyone of my tears. Of cause their were times I felt I could not cope! But I wouldn’t change him. I will say the school told many lies as i court we were told he wasn’t on sen register (b4 diagnosis) but i requested school records in 2009 a year later and discovered he was on it from reception. I also saw incidents recorded (not meltdowns as such) but many clues they held back that would have got his diagnosis sooner. I would suggest request school records. just write to head state freedom of information act and data protection and they have 15 school days to oblige. There may be stuff that will help u gain a diagnosis. I will warn you that behaviour tends to change in school from 8+ (not always but for so many its the case). Good luck with gaining diagnosis it opens doors to many other services. The sooner the better. Email me anytime u wanna talk.xx

  2. Kelly Cairns (@kellycairns) October 1, 2011 at 6:20 pm #

    Hi Claire

    I’m Kelly off Twitter 😉

    Out of interest, does your little man have these meltdowns at school? I read your bog post and word for word I could have written it myself! the expression on his face is EXACTLY the same as my little boys (6) at the beginning of a meltdown.

    I hate them and he does too!

    We haven’t been diagnosed yet, mainly because the behaviour tends to be isolated outside of school, but I’m convinced it’s because he has structure and clear boundaries and routines in school, and not so much at home and outside of the home.

    I’ll be a regular reader from now on x

  3. kidspartyheaven May 4, 2011 at 2:51 pm #

    Oh I feel for you.

    Most mothers have their unconditional love thing tested at some point. Others like yourself have it tested often.

    It’s hard. Wow.

    I’ve come across quite a few children with autistic spectrum disorders in my work as a storyteller and children’s entertainer and I’ve found that puppets are pretty good at third person communication. I’m sure you must know this and I’m probably trying to teach my grandma to suck eggs, but it’s something to do with the static expression. If nothing else, they can serve as a distraction to help break the fixed focus.

    All strength to your elbow. I take my hat off to you.

  4. Lizbeth April 28, 2011 at 2:59 am #

    I’m a bad bloggy friend–sorry. I’ve been reading your posts and something always pulls me in the other direction…

    Those meltdowns are so horrible and the judgement from others is just icing on the cake. His meltdowns sound so intense. And I too would give anything to see into his little head to see what’s going on.

    Hang in there.

  5. Casdok April 27, 2011 at 10:33 am #

    Melt downs are so very difficult for us so even harder for them.

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