If you ever told a parent of a special-needs kid that “God picked them”, then stop that. In His sovereignty, did He map it out? Yeah, maybe. Heck if I know. But that statement says that some people are cut out for parenting special kids and some are not. False. You just do the work. And if you were put in the same situation, you would do the work, too.
I’ve been the parent of a special need son for almost 12 years now, and I’m still trying to figure it out.
The earliest stage is the surprise and denial of it all… maybe they’re wrong, maybe he’ll be fine. This one repeated for me, cyclically, over probably the first 5 or 6 years of his life.
And honestly, doctors do often say the worse-case scenario, and then it isn’t that bad. “They” didn’t think R2 would live, and then if he lived, he would live in a vegetative state, and then, when we made it past that, he would never walk, talk, or live a functional life. At some point we had to learn how to take in what they were saying as a very real possibility, and then try to believe for the best and do all the medicine and therapy and intervention we could to beat those odds.
One of the hardest things in those early years was the realization that he was so, so delayed. We’d get encouraged because he was making eye contact, and then realize other babies his age were sitting up. That crash to reality happened over and over again. He didn’t walk or eat solid food until he was 4.
And there was so much anger. I was so, so angry. I don’t even know who I was mad at, but the first few years, R2 would rage at me, and I would rage at him, and then we’d both be frustrated and exhausted. And I could use my functional adult brain and think, “He can’t understand, and he is a baby, and this is ridiculous to be fighting with a baby.” Then that logic would shut off because surely he could get this, if he tried.
At some point, around 4 years, I think, I got some help, and read a book called Son-Rise. It’s basically an autism treatment story mixed up with some hippy/Buddhist philosophy, but really, really good. I walked away with at least one concept. Acceptance.
He is who he is, and he is great how he is. I want him to grow, but if he never reaches my “normal”, that will be okay, because he is Richy, and that’s good enough. In fact, Richy is great. If you’ve never been through this, that might not make sense to you, or even seem simplistic. It was life-changing for me. When we worked on crawling, the anger was gone, because he didn’t HAVE to do it my way. He responded so well to our attempts to get in his world and let him be.
Now, I’m entering a new stage, where the acceptance pendulum may have swung too far, and I have no expectations for him. There’s a line, maybe not that fine, between giving up demands and keeping hopes and dreams. I have a feeling the learning never stops.
Went to his parent-teacher meeting last night. He got straight A’s, for stuff like sorting silverware and identifying numbers 1-5. I am so proud of him.