Friday, 18 June 2010

Life journey: surviving -> coping -> writing

harc is the Hertfordshire branch of the National Autistic Society (NAS) and was formed in September 1998 as an independent registered charity based in Hatfield. It was created by a small group of parents (:-D) concerned about the availability of services for their children. In 2007 harc joined forces with the NAS becoming the Hertfordshire branch of the national charity.

Sonshine has issues. In a room full of the challenging, he shines. His compulsive need to see what makes each person snap, that random streak of unique, has made his life eventful.  He is fascinated by the moment before an individual reacts to the things he says or does. His face is a mask of awe until the certainty erupts. Then he knows fear. He was only eight the first time a random stranger said he wished The Boy would: “Go home and die in his sleep!”

Life was simpler when his obsession was making electronic sensors flash at him: moving into, and out of, their beams.  

He is working to overcome challenges created by minute chemical imbalances, or organic differences, in the brain. Re-programming: overwriting the behaviours learned from flash points or visual fiction, takes time. He has linear pathways. We have to retrace each step from the here to the place where he learned the inappropriate action, then we can, literally, write new instructions with him.

Fleets of carers have been working with him for a few years now. Some have been working against him: managing through the path of least resistance.  

I am preparing him for life beyond the family home: a necessary stage. Working to find the individuals who will learn in one year what trial and error taught us, much more painfully, over a much longer period of time.

But the sight of more socially-skilled local youth lining up on the path opposite our house to watch him dance in his room fills me with ____________ (feel free to add an adjective here – any one of them could be appropriate.)

When we are out I cannot predict who he will target. I have learned to read people and to predict their actions. Sonshine has never explained his methodology. I learned to observe as he does.

I think understanding the human condition is the foundation of all writing.

Being a parent is awesome.

1.     Causing awe; appalling; awful; as, an awesome sight.
2.     Expressive of awe or terror.



  1. Wow. What a powerful post, Elaine.

    I agree with you - nothing awes me more than parenthood! :-)

    Have a great weekend!

  2. Lovely touching post. I have a neighbor with a severely autistic son. She has said, "We don't even know what is in his brain. We can't unlock his intelligence." I loved that idea. And when you get to know him, you feel that.

  3. Wonderful post. Thanks for sharing with us!
    Awesome is truly the correct word for parenting.

  4. I read Terrasa's post - the minutes she thought her daughter was lost - it brought the feelings rushing back. Parenting is the scariest thing.

  5. Awesome is perhaps the best description for parenting. It is a scary responsibility.

    My nephew (who lives in Coventry UK) is autistic. My brother's apparently endless patience always amazes me.

    I have worked with Autistic youth in the past and it is so challenging (rewarding too). But at the end of the day I got to go home.
    One the guys I worked with back then still keeps in touch. We used to despair for his future, but with the right support he grew up into an amazing independent young man. In the end managed to turn his obsessive behaviours into hobbies and work.

  6. Thank you for sharing your son's life with us. You are opening doors to us who only see normal as being the right side of the coin, but with your eyes we can see there is more to life.

    How could someone say such a cruel thing to anyone else let alone a child. I would how they would have felt if some had said it to them?

    Best wishes to you both,

  7. Hi Al
    I used to think being there for Sonshine was the hardest thing. Planning for the other thing is much harder.

    The hardest thing about hearing Big Blokey's words were knowing they came from his parenting reflex too.
    One of Sonshine's responses, we wish he would keep for home, is: "I'll say sorry, but I don't feel it you know."