I never wanted autism.
There I've said it.
Now I've probably pissed off any adult autistics that actually read my blog and possibly some of the parents.
Still it is true. When I was pregnant I didn't think "I hope my older son has a hard time making friends. I really hope my younger son still talks in single words at 15 years old. I want a family that can't go over to the grandparents' houses because the younger one cannot follow simple rules. I want to spend every family gathering taking turns with DH sitting outside and watching the younger son climb trees. I want to still be explaining basic idioms to my 18 year old. I want to stop taking family vacations when Alan starts having meltdowns on the beach. I want to stop certain fun family traditions because my 14 year old won't go out in the dark."
Does anyone think these things?
But as soon as I say "I hate autism" people jump all over me.
I really find it hard to believe that anyone wants this life. Don't get me wrong -- if they ever would find a cure, I would not force ANYONE to take it. I would discuss the options with Joe at length. I think he would chose to take it, but if he said "no" that would be that. Of course so much would depend on side effects that even discussing the possibility is sort of foolish.
But I get so frustrated by the "neuro-diversity" crowd that thinks we do not need a cure. Maybe they don't. But I do. I want to unlock the mystery inside of Alan's brain. He is so cuddly and affectionate and has such an infectious giggle but he also has a blood curdling shriek that I don't understand. I try. I come up with all sorts of interpretations, but I just do not know what he wants some days.
Trust me, I get that life isn't fair. DH and I regularly joke about
that. Most of the time, I laugh about our life. After all, it is
inherently funny to watch some of Alan's climbing activities. But when
he is wrecking our house and trying to climb on the electrical fixtures
and the heater because we aren't letting him outside to climb, it is a
little less funny. When he was going through his "poop smearing" phase and we were cleaning his room at least every 24 hours, that was definitely less funny.
I am terrified quite regularly when I think of the future. I have a child that will need life long care. What happens when I am not around to provide it? My older son cannot care for my younger one. Both DH and I are the youngest in our respective families. That means all aunts and uncles are older than us. What happens when Alan is a 30 year old adult and everyone around him is 60+? He can already overpower me and he is still (marginally) smaller than me.
When I said that Kelli Stapleton did the wrong thing but I wanted to understand it, I was criticized. Someone said that anyone that thought like that didn't want an autistic child. That in fact, they wanted a neuro-typical kid. Um, yes. Actually I do want a neuro-typical child. Two of them would be nice. I love my boys with all my heart and soul, but I don't want them to have all the struggles they do. If some people believe this makes me a bad parent, then so be it.
I've never claimed to be perfect. Far from it, as a matter of fact! The popular expression is "love the sinner, hate the sin." Well, I love my autistic kids but I hate their autism. That is just the way it is.