I haven't written since late February, and we're in mid-April. It's been a rough couple of months. All three of my kids had birthdays. I was sick. The SEAs all had bouts of illness. Glutened several times. Basically, life got in the way. And besides which, I had books to read, things to crochet, and TV to watch.
And honestly, shit was getting me down. Another birthday for Crackle, come and gone with no language from him. Garbage on the news. Garbage in the government. Garbage, shit, and bullshit. Everything seemed like it was exactly the same, and no improvements anywhere.
And then I snapped, blew a gasket on some people for their crap, unfriended and unfollowed some accounts that I was keeping around in the idea of knowing one's enemy, but was really just using to anger myself. Stupid. So it's gone. Cleared out.
And I'm back, hopefully more regularly, with less serious, more hopeful and hopefully some funny stuff.
On Hope, because I need some, and so do you:
Some people with children like Crackle have no hope for their full recovery. I have hope for Crackle. Why not? I mean, what's the harm in having hope for a full recovery. I don't mind the term, not because I think it's an illness, but because I think it's a social developmental disorder. And it can improve to the point where it's no longer an issue. I know it can. I have friends who have kids who have adapted so well to it that they no longer need therapies, or only remedial, catch-up therapy (like occupational therapy to help develop fine motor coordination, or speech therapy to help improve clarity). Their kids no longer behave autistically. They don't. They just don't. It's fabulous, it's awesome, it's cool, and it's true. I have one of those miracles myself. Oh, he's not quite
there, but so close, it's palpable. And yes, 3 years ago, they told me it was hopeless. That there was no chance. He'd probably never talk. He'd never have a friend. He'd never have a meaningful relationship. They were wrong. And what if I'd given up? What if I'd said, "Okay. We'll teach him to cope."? He'd still be an awesome kid. I'd love him with all my heart (like I do Crackle). He'd be an amazing little liner-upper of all the things. Now? He has a friend. He says things like, "Mommy? Is tomorrow Sunday? I want to go to church to play with my friend! He's so much fun! Last week, we played with the cars." He says things like, "Oh Mommy, I love you." and "When I grow up, I'm going to watch Crackle* for you. I will teach him to talk." (Of course, he used his real name).
I remember telling Santa one year, "They're both autistic. Neither can talk. We're just aiming for a picture." This year, Pop went twice, and talked Santa's ear off.
So I said fuck this ABA bullshit, where the aim is to get a compliant child who will do as asked. I went to Son-Rise
. I got hope in bunches there. If you can't get there, buy Raun Kaufman's book
and watch him on YouTube
And where did that get me with Crackle? Well, he's happier. I'm happier. He learned to nod his head yes last week. He learned to say "yeah" in the last couple of months (his only word, right now). He eats what I ask him to. He's potty trained (mostly). He's sleeping better. He's screaming less. He's making almost appropriate amounts of eye contact. He's asking
to play with us. He takes us to the trampoline to jump with him instead of going out and jumping by himself all the time. He saw a little girl at my chiropractor's office yesterday, and he lit up with a big smile and gave her a hug. It's slower with him, but it's happening, and there's no reason why it can't continue to happen forever until he's no different from any one else.
Why should I give up on my dream of full recovery for him? Because he's awesome now? Of course he's awesome now. He's fucking perfect now. Like an infant or toddler is perfect. We love them exactly as they are in that moment, and continue to teach and hope and love and nurture. We don't say, "Oh, geez. He can't line up those blocks perfectly. I'm going to aim a little lower. Maybe mechanic instead of engineer." So hell fucking no, I'm not giving up my dream of full recovery. I've seen one miracle in Pop. I'm aiming for two. I am embracing their autism, getting into their world, and showing them that mine is pretty cool too.
And I am not judging those who don't believe like I do. Oh goodness no. They believe their child cannot recover. That is completely okay. They're not comfortable hoping for something they believe cannot happen. No one is. And they'll will do great by their kids. They will teach them to cope with autism. They will get the best therapies they can find for them, to help them adjust to the world as best as they can. They've got hope for learned skills, for new talents to shine. They're not without hope. They just doesn't believe, as I do, that their child could ever be indistinguishable from other people. And that is okay.
My Crackle may never get there. He may never learn another skill in his life. It doesn't matter. I love him unconditionally. And I believe that he will someday tell me his every thought. That he will someday have a girlfriend or boyfriend. That he will someday tell people "When I had autism..."