Thursday, 18 March 2010
-
C is Celebrating 21 years!
I want to bounce into C’s room singing ‘happy birthday’ giving him a big hug and showering him with kisses and presents. But I know what would happen if I did. And it is not about me.
So I walk into C’s room, he spies me with his peripheral vision. And then he looks at me, head tilted upside down, fingers pressed into the corner of his eyes. C hums loudly to drown out anything I might say. So I whisper in short sentences not directed at him but to the birthday present I am holding. His humming becomes quieter as if he is straining to hear what I am describing. I don’t give C the present as I know he will push it away so I open it and leave it in his room for him to look at in his own time. But I know he won’t touch it, he hardly ever touches anything, his fingers are glued in his ears.C doesn't want for much, I have to be inventive. So apart from a few presents I give him experiences – memories.
Because of C's love of loud music we went to see We Will Rock You.
And for his love of travelling fast and in straight lines we went on a speed boat trip on the Thames.
I could not blog without mentioning the dehumanizing (on so many levels to both Autistic people and parents) Autism Speaks video. But I have been finding it hard to put into words how it has made me feel as a parent of a young man who is 'low functioning' (I hate that term as C 'functions' as best he can) Even though C does not speak - with patience and understanding I learnt to listen to him.
His first school would not listen to him so I fought for one that did. His first group home did not listen to him so I found one that does. All without voodoo or fighting a disease – but fighting a system and by doing so I hope we have educated a few people along the way in their attitudes and listening skills.By accepting C's Autism and working hard to help him I am not a warrior, or victim or hero. I am a mum who listens to my sons needs - it is C who has had to do the real hard work every day.
So don’t listen to Autism Speaks and their negative stereotypes.
(Excuse me while I have a C moment humming loudly with fingers in my ears)With the right attitude and support and understanding children like C grow into adults who do have a good quality of life.
My son was not robbed from me and nor were my dreams.
I still want for C what any mother wants - for him to be happy healthy and fulfilled without pity and prejudice to reach his full potential.
We are hopefully on the right track.
Happy birthday C! I did manage to get 1 kiss in! You have taught me so much. I am so very proud. May you carry on touching peoples lives. Diversity makes the world a better place and love makes us stronger.
RecommendRelated Posts
Post a Comment
- Back to autisable's Autisable Site!
- Note: your comment will appear in autisable's local time zone: GMT -05:00 (Eastern Standard - US, Canada)
About the Author
-
- From: esteeklar
- Name: Estee
- Location: Canada
- About Me: I am the Founder of The Autism Acceptance Project and writer of the original Joy of Autism blog, grad student of Critical Disability Studies and single mom to a wonderful autistic son named Adam.
Stats: This Week All Time Posts: 0 27 Views: 0 8192 Comments: 0 36 View all posts by esteeklar
Comments (3)
Many, many happy returns of the day - wouldn't catch me in a boat : o
Happy Birthday to C
I know exactly what you mean about people listening to our young people. My dd's primary school was little more than a babysitting service, they were too busy making sure that the children didn't kill each other to do anything else. They had no real knowledge of how to make the environment fit the child, to understand triggers for autistic meltdowns and minimise them, to put together compatible children in the same class instead of just throwing all the most severely autistic children in one class. It was a recipe for disaster and every child in that class suffered for it. One child's pleasure was anothers agonising pain, it was a hideous situation.
Now she is in a specialist school for autism and they take all those factors into account. DD is in a class with compatible young people, and when she can't cope with that, she is in a room with no more than one other child while she is encouraged to learn - yes learn! Unlike her primary school, they see the child first, they see how their autism affects them, and they adapt to work with it. And she is now learning. She is calmer. She is happier. She suffers much less from meltdowns because she is understood, they are listening to her and give her what she needs.
This is what makes the difference, and no, I wouldn't change her either. I want the world to change and I don't care if people think it's unreasonable, because it's not to me, or my dd.
Forget the "high" and "low" labels. If C is happy he's ahead of the game (and a lot of NT people too).
We are all different trouble is people pass judgement from their own position and whoever they are they are still a minority of one.
Happy Birthday.