Guest What? The Forgotten Sufferers of Autism.

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Welcome to this week’s ‘Guest What’. This feature gives writers of other blogs the chance to submit a post and put it up on my site. It may be that they write here about something they wouldn’t normally say or put up on their own site, or may be they would like my readers to know more about them…whatever your reason you are very welcome here :)

When this week’s blogger sent me her guest post I cried. You might need some tissues for this one. I am going to hand you over to the fabulous Loubelle who blogs at More Than a Momma.

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OJ

As I was growing up I always imagined the path my life would follow. I would become a teacher, meet the love of my life, get married and have 2 children (one of each).I can sit back now, 20 years later, and laugh. I don’t have that life. At 27 I became a single Mom, working in a shop, juggling my job and the needs of a very difficult child. This was not the life I was supposed to have.I am now happily remarried and have 4 children. 2 of each. Another diversion from my life plan, but a welcome one.

It wasn’t until a year ago, at 14, that OJ received his diagnosis of having both Autism and Aspergers Syndrome. Despite attending schools with fabulous Ofsted ratings they simply wrote him off as naughty and not very bright, they couldn’t see past his exterior. I knew it was something more than this but no one seemed to want to listen. I felt alone. I thought I must be the worst parent in the world to have raised a child with such strange habits. It is only since he has received his diagnosis that I can begin to understand him and realise this is nobodies fault.

The diagnosis is just the beginning for most children. They get extra help at school, statements of special needs, teaching assistants. Not so for us. I think because OJ is so near the end of his schooling they are hoping I will quietly go away whilst they help the much younger children. I am by no means diminishing the fact that the younger children need help, more expressing concern that the elder children get left by the wayside. If they ignore him long enough he will become a patient for adult services to deal with. One less burden on their already overstretched resources.

Since OJ’s diagnosis I have been sent leaflets about his condition, a detailed report on his needs and attended a 2 hour course on what life is like for children with Aspergers. Then we have been left to our own devices. Recommendations of follow ups are being ignored, despite me frequently chasing them up. He is being brushed under the carpet, in the knowledge that he will soon be out of the school system and thrown head first into a big wide world that he has no understanding of.

In OJ’s case he has no comprehension of irony or differences in patterns of speech. Everything is literal, there is no room for grey. There is black. There is white. OJ cannot bear to be touched without prior notice and permission. Sometimes siblings brush past him and touch him lightly. He then goes into wild rages that he cannot control. Sometimes I am frightened of him. He has no way to express feelings that he doesn’t understand himself. He hates noise and has to wear ear plugs or use his iPod to drown out the sounds around him, to him they are crashing, loud and distracting. To us it is just normal. His siblings are constantly being told to make less noise, when they are not being especially loud, just to avoid a meltdown.

OJ hates people touching his things and sometimes Will or Bella will touch his computer and look at him as if to say “What are you going to do about that?”. Huge rows ensue. I bear the brunt and have to be the peace keeper, when really sometimes I just want to hide away safe in the knowledge that I can have an hour without a row or a misunderstanding.

OJ is wonderful. He is and will always be my firstborn, my baby, who changed my life. I worry about him all the time. Worry he will get into fights because he doesn’t understand the joke or is the brunt of the joke. I worry that he will go into a rage because butter or cheese have been placed anywhere near something he wants to eat. I worry he will refuse to leave the house because he had not has enough prior notice of a change of plans. I worry about these and the myriad of other quirks he has.

As a whole I worry about this group of children, the teenagers who come late to a diagnosis, and are left with their families to fend for themselves. They have so much to offer the world but I think there is a real danger that these forgotten suffers of autism will be swallowed up whole by the big, mean, wide world. I will do everything I can in my power to protect and inform OJ of the choices he has and the things he can achieve. He is so much more than a boy with Aspergers, but I wonder how I can get the world at large to see beneath his exterior and see what huge potential he has to offer.

I love you OJ, more than you will ever know. I may not always do the right thing or understand you. I will probably get angry that your habits put everything on hold for the entire family. But don’t ever think you are not loved, adored and protected. We will always be there for you my lovely boy. Forever and a day.

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If you are a blogger and would like to appear on Guest What? then please email me at vickywelton@hotmail.com

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6 Comments

  1. Loubelle
    October 27, 2013 / 1:40 pm

    Thank you Victoria for giving me the opportunity to get this issue out to a wider audience and thank you everyone for your comments. We are doing everything we can for OJ and crossing our fingers that he has finally made it onto Autism Outreach’s case load after so long on the waiting list. x

  2. Angie
    October 22, 2013 / 1:50 pm

    It made me cry too, a very important post. We as parents know our children & schools should listen. Sending all our love to Loubelle & her family. XXX

  3. Sarah MumofThree World
    October 22, 2013 / 12:42 pm

    What a beautiful, heartfelt post, but so sorry to read about the late diagnosis and the effect on OJ and the whole family. I can’t believe it wasn’t picked up earlier and his mum wasn’t listened to.

  4. October 22, 2013 / 8:14 am

    Wow, no wonder you cried Vic! This seems so cruel not only for OJ but for Loubelle too. Why do these diagnosis come so late sometimes? I do hope that OJ gets the help he needs in his last 2 years of schooling, the really crucial ones. A very important post, thanks for sharing.

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