Sep 5, 2008

this is moving

some of the blogs i read are from parents with children who have autism...this is one that i found and this post is so moving i wanted to share it. i work with these kids everyday and i love it, but at the end of the day i go home to my quiet house, and on the weekends i go run errands without worrying about people staring. these families go through so much day in and day out...

If I had a pound for every time I heard someone say ‘if he were my son I would give him a good spanking’ or ‘if he were mine I wouldn’t take him out in public’ etc etc - I would be a rich woman. Not one day has gone by when I have taken C out that I do not hear at least one derogatory hurtful remark about my beautiful son. So sadly I think Michael Savages’ recent thoughtless comments on autism represents a proportion of societies views about our children.
When i see C happy my heart sings. But others find this large display of pure joy disturbing embarrassing and even frightening. We have emptied countless cafes, shops, or even been asked to leave.
When C was diagnosed all those years ago many friends disappeared as they didn't know what to say or how to relate to C. Some didn't want their child 'catching' autism. Our world shrank as people kept away. Only recently C and i met up with someone we had known many years ago. We had a coffee - she went to the loo -and never came back.
You get used to living on 4 hours sleep, cleaning poo off the ceiling, trying to find something C may eat. You get over wondering what his voice would sound like if he ever spoke. And there will always be another funding battle to fight.
A new way of life emerges and becomes the norm.
Other things take priority, the superficial, artificial and materialistic things are just that, they are things.
C gives me so much more. A smile, a look, a delighted squeak. A licked clean plate (on those rare occasions). A licked clean train carriage window is more often.
Our odyssey has not been easy. There have even times been times when I thought he was going to die. All the comfort I was given by doctors, was ‘wouldn't he be better off dead’.
Society judge him, make fun of him, they film him on their mobiles. C has had dog biscuits thrown at him in the street, and once was even punched by a passer by. Some of my family are embarrassed by him, some say they are scared of him others pity me and give C no second thought.
They don’t see the beautiful being that he is, or the gifts that he shares. They don’t see that C is happy and does have a quality of life. They cant get their heads round it, or rather they don’t want to or even try.
Living with disability can be tough at times, but you get there. It is also full of much love, joy and laughter. And i wouldn't have it any other way.
It’s the prejudice I find the hardest part. The attitudes of some family and friends and some professionals whom we are supposed to trust. And the strangers in the street.
And that is on going. This is our reality. C by the very nature of his autism and challenging behaviour is isolated and in turn isolates me as his mother.

1 comment:

Alison said...

It's so hard to battle ignorance. We had a little boy in one of our programs who was diagnosed with Asperger's Syndrome. The after-school staff didn't want to adjust the program to fit his needs because they saw it as favoritism. Luckily I have a friend on base who's an OT, so she held a special needs/autism awareness training for our staff and they started to understand what was going on a little more. P.S. by the time he left, he ended up being the favorite anyways.

Steven & I really enjoy reading your blog, Lauren!! We should catch up with you & your "perfect husband" soon! :)