I wonder if anyone finds themselves in a similar situation as us?
This is my story. I have a 15 year old son with Aspergers who is very high functioning with a superb vocabulary and quite good social skills although can be inappropriate sometimes and can be quite rude in order to try and fit in.
And basically he doesn't fit in anywhere - does anyone else find this? For example, he goes to a mainstream school, the school are fab and have provided excellent provision for him educationally, he goes for one day to a local agricultural college which he absolutely loves and he'd quite happily go there every day if he could! Quite a few of the children in his school year have known him since he was three when they all started nursery together. This is a blessing, as any Asperger's parent knows, since they all know his ways and make allowances for him and it keeps continuity for him.
Recently however there's been parties and social things they do and he doesn't get invited. This weekend one of them had an old primary friends reunion type party. Guess who wasn't invited. He even sent her a message on Facebook to ask for an invite - heartbreaking.
So life with the mainstream kids socially is not brilliant, there's never been any bullying and their tolerance is high and they are kind, but outside of school it goes no further. He has literally one kind of friend who may come up and call for him but that's when he has nothing better to do I feel. This child has ADHD and has his own set of problems. He is in the year below my son.
This summer we are trying out a community farm which fills the college gap for the holidays. It's for children/young adults with learning disabilities and mental health issues. He is enjoying it but he has more to to with the adult volunteers than the users and this has always been the way with any activities or groups we have tried in the past, he is always the least "disabled" (best way of describing it) and I almost feel guilty for sending him! Can anyone with an Asperger's young person relate to this? In fact one group we tried he asked me afterwards "why did we do that group with lots of disabled children mum when I'm not disabled?"
For the holidays life hard because it's up to mum to fill the time - (does anyone else find their Asperger's child, when out of routine, their repetitiveness and obsessions magnify?) Luckily I work term time only which is such a blessing. My 18 year old daughter helps out but she'll be living her own life and is off to university in September. My dad helps out and will take him off for the day. One day a week he is having hospital"therapy" to overcome a totally irrational fear of x-rays. He's had xrays since he was 6 years old for scoliosis (curvature of the spine) and since the surgery word was mentioned recently - now won't have them from a fear of what might happen if he does and a dread of the sound of the x-ray machine itself. This fills up another holiday day!
Basically I feel there's not a place for Asperger's children. There are youth groups - I've just found one that's to 16 years, he's 16 in December so almost too late. My friend has a son with high needs and it seems that since he turned 18 his world has changed and this week his life is full of different activities - because he has moved to adult social care. ??!!!! Up until then his mum was like me, the sole source of entertainment in the holidays and also works term time only in order to do this. How do you parents manage who don't work term time only with a special needs child?
I put EHCP in my title because that's a new thing for us and I know it will be put into action in year 11. Does anyone know whether that will help pay for things like the community farm we are doing now as that will cost me £160 by the end of August and surely that could be put on plan as helping with social skills?
Thanks for taking the time to read this essay. At the moment I'm feeling like it's just me in this boat so it would be good to hear your experiences.
er, well i'm ignorant but will butt in going on my own completely undiagnosed childhood (autism learning disabilities and mental health problems), i hung around with fundamentalist christians, did evening classes and adult learning, went everywhere on my own eg theatre, cinema and art galleries, and mostly know thirty-year-olds and adults. You may not wish to use all this information ('send him to the jehovah's witnesses!') but he'll be fine in evening and day classes, he's better off studying something and being happy while making superficial and pleasant friendships (nobody ever met a friend at an evening class i'd say, from decades of attending multiple ones, they're full of adults with busy lives and the odd single man on the pull) than going to stuff that won't even have that to be said for it. The really great thing at his age is he can socialise with people ten years older and have enough in common to do it, now i'm forty and all women my age are grannies who only talk about their grandchildren i realise how lucky i was to be able to share academic interests with adults when i was younger, at least there were conversations i could join in and social groups i could be part of. Hopefully he'll find that special someone and have children of his own and be able to progress in life too:)