Well to continue tonights theme…… I am blogging about my boy.
As I sit here on the old lounge that has been sewn up a million times and is covered by toothpaste (it did have a 10yr guarantee on the material when we bought it the year DS was born, was torn to shreds by the time he was 4. Don’t think the guarantee extends to Autistic obsessive picking of seams and countless hours of body slamming) I am feeling a little blue. Boo is stimming his heart out on his bed (for those not in the know, stimming is not what you think even though it is short for Self Stimulatory Behaivour. He is flapping his arms, kicking his legs, making humming noises and generally ticking and twitching all over) with 2 doonas and 3 pillows. One of them is mine. But every now and then he pauses and gives me a heart melting smile before he decends back into Autismland.
I had a conversation the other day. The conversation you have numerous times when you get together with other people who have had Autism touch their lives. Would you take the Autism pill? Would you sell your soul to the devil to acquire that magic pill that would take the Autism away?
It was our Autism support group meeting. There was only 5 of us there and we all knew each other well, so there were no new mums to be shocked at the turn in conversation. As usual I have won the lottery and I have the most severely affected kid. I run the support group, the president, the convenor, the one everyone calls in the middle of the night when they just want some peace. I am also the one who listens. So in turn, I am the only one that actually knows that I have the jackpot. These people know my name and my phone number and that I listen. They don’t care to know any more.
One of the mums starts the conversation. Her son has Aspergers.
Mum1 ‘I heard someone talking about if they could get a pill to take the Autism away they would sell their house to buy it! Isn’t that disgusting! Why don’t they just accept their child for who he is!’
She turns to me and says ‘Would you sell your home for a pill?’
Me ‘Well we already did and used the money to fund ABA’
Mum1 ‘But you wouldn’t do it to buy the Autism pill, though would ya?’ She starts laughing and some others join her.
Me ‘You know what? I would. I would sell everything I own and work hard my whole life to pay it off. If there was a pill that could take away my sons Autism I would find a way to pay for it in a heartbeat’
Needless to say they are all shocked and a couple I am sure are disgusted with me. The subject was quickly changed.
If there was a pill that could take away the sleeplessness, the need to only eat pale coloured foods that are a certain texture and temperature, the stimming, the screaming, the aggressiveness, the sensory problems (touch, taste, sound, sight), the confusion, the communication problems, the obsessions, the fear of water, the rituals……… oh I could go on and on and on. If someone developed a pill like that I woud be first in line.
I fear for my sons future. I fear for the future of my daughters and of my future. I fear the day when he realises that he is bigger than me (not in the too distant future) and that I am not really the boss – he is. I fear the day that I die and have to leave him in a world that will never understand him, let alone cater for all of his obsessive needs. I fear that one day my girls will have to put their lives on hold to help care for their brother. I fear……
He is not Autism and Autism is not him. He is my son and I never mention his Autism until absolutely necessary. I want a pill to take away all the barriers that stop him from being the wonderful person that he is. He is funny and artistic and really really REALLY clever (one of the reasons why he is not allowed in any specialist programs. THAT is a whole ‘nuther rant!). He is cute and cuddly and just plain wonderful. My heart sings when I see him cause most of the time he is smiling. He is my light. Autism is not.
He is still bouncing and reciting word for word the whole Simpsons movie, but it is slowing. He will stop soon and he will either fall dead asleep or he will get his second wind. DD2 has a sleepover here tonight, so it is no biggy if he decides tonight is a sleepless night cause the kids will be awake for hours still. He is now making high pitched squealing noises and then saying ‘no!’. I have been wondering if perhaps he has tinnitus, but there is no way of asking him. Believe me I have tried. If he could just tell me what is wrong, how he is feeling, what he did today, where it hurts, it wouldn’t hurt me so much. How can I make it better when we live on different planets?