For a long time, it was a secret to all but our closest friends and family. Because Joseph is high-functioning, I could get away with not telling anyone. After all, no kid the age of two (ok, no boy the age of two) has social skills worth noting, and anything else could be written off as quirky toddler behavior.
People called him shy, or young for his age. But they didn't call him autistic. And that was important to me.
Jenny McCarthy has written that she knows she's putting her son, Evan, into the limelight as the poster child for autism. And I wonder, how good is that for Evan?
Even I look at Joseph sometimes and only see autism. Do I really want the rest of the world to do the same? Is it fair to put that label on him?
I don't know what's fair. I only know that, for a while now, I've been feeling a strong inner compulsion to go public with it.
I suppose this blog has been the first step. Friends have read it and reached out, saying they had no idea what we were going through. Joseph's preschool teacher, who takes classes herself, said they'd covered sleep difficulties when studying autism, but only after reading my blog did she really get it (something about me acting like a raging alcoholic in the middle of one dreadful night -- see July 13 post).
But I am a public speaker, and it is time to talk about it. Not just for the rest of us, but even for Joseph. The pitfall, yes, is that more people will label him. But the trade-off is that more people will understand him, and kids like him.
To be truthful, I am not looking forward to this label for myself. Mother of an autistic child. Mother of a child with a disability. Yuck. That's not who I am. But it is a piece of who I am . It has shaped me and molded me, and it's time to honor this process more completely.
So, this coming Monday in Toastmasters, I will tell the story of how Joseph was developing normally until around the age of 2. I will speak of the devastation of an autism diagnosis and the black hole I fell into afterwards - complicated greatly by a continual lack of sleep. I will talk about the treatments that have helped us - the lesser-known dietary and biomedical sides, the more known behavioral approaches. I will describe how far he's come and how the future is still uncertain. I will tell them that they'll be hearing a lot more from me about autism after this.
What I want to do is ask them, beg them, not to look curiously at Joseph -- the autistic kid -- after this. I want to say, please don't start talking to him in a baby voice, or asking me how old he is when you could ask him.
I want to say, please know you can still ask me how my kid is doing -- it's not a taboo subject -- I am still me, and he is still him.
But I won't. Human nature is what it is, and if I am being asked to step up to bat on this, then I will do so and let God handle the rest. As for Joseph, pardon the switch in analogies but his karmic wagon is hitched to mine and I can only go with my intuition.
Six days to ready myself. Gulp.
This is brave. I know a lot people whose children are considered high functioning struggle with this. With my son, if we don't tell people they are going to figure it out soon enough. We can all only make the decision that we think is best for our children.
ReplyDeleteI think you are right, ultimately it will help people understand him better and with better understanding often comes greater compassion.
Last night my son and I watched a clip on ESPN about Clay Marzo (sp?). He is a world class surfer, about 19. He didn't know he had Aspergers and neither did anyone else until he was 19. The before and after ways people responded to him astounded me. Before he kept losing sponsors because people thought he was cold, stuck up, or weird. Now people understand there is a reason for why is he the way he is and are more accepting. It was a neat story.
Blessings to you
Hi Autism Mom Rising (great name!),
ReplyDeleteThank you for the encouragement. That's a great story about Clay, and it gives me courage. I can see how you'd judge someone as arrogant unless you knew that creating friendliness and warmth were skills they didn't have!
I wonder (as I bet you do, too) if part of the whole ASD thing is a process of everyone learning to be tolerant of others...to accept that there is more than one way to "be" in the world.
I do wonder that about tolerance and acceptance - And when I consider it from a spiritual perspective of souls perhaps coming into the world with the purpose of teaching us that, it adds another dimension to that idea for me. I also wonder if it is also an environmental wake-up call to humanity. Since so many of these children are sensitive to 21st century way of life (pollutants, chemicals in foods, etc) and there numbers continue to grow.
ReplyDelete