I was talking with some friends on Facebook the other day about one of the many frustrations and heartbreaks that occur when raising a kid with special needs... particularly with a Spectrum disorder. My friend Joy said, "I want someone to find the key to unlock this for him and my niece and everyone on the spectrum."
And I thought that was a great image. Finding the key. That's really what it's about.
I told her that finding the key is hard - it's small and obscure and each key looks totally different for each kid. But that's not even the hardest part. The worst thing about it is after finding a key that works for a while, something inside his little brain changes the lock, then you have to go find a new key. I told her it's exhausting - the constant searching and trying each key to see if it fits, then when you find it, having the energy to make sure you're consistent in its use. And some kids, like Rowan, you're searching for multiple keys at once - the social key, the language key, the sensory key, the comprehension key, the anxiety key. Sometimes, the locks look the same and you can use the same key for multiple doors, but oftentimes, that's not the case.
The hope is that you'll have longer and longer stretches between having to find new keys... and maybe, just maybe one day, you'll find the final key and the locks don't change anymore. That usually happens years down the road. Not too many years, but definitely enough to seriously consider heavy drinking.
There are so many things I wish I could change. No parent wants to watch their child hurt and struggle. I wish he was able to communicate with us. I wish he wouldn't violently thrash in his car seat after a trip to Target because his little mind is too overstimulated to process the experience. When he melts down at church, I wish I could just hold onto him tightly until he calms down - but the closeness makes it worse and I just have to step back and let him try to recover on his own... usually after I've been hit or kicked in the face. I wish that new surroundings and new experiences didn't cause him to have overwhelming anxiety. I wish that certain textures, sounds or images wouldn't work him into a complete, uncontrollable frenzy. I wish he wouldn't purposely injure himself when he gets frustrated beyond his control.
But, the thing is, despite all the ways I wish I could change things for him, there are so many things I wouldn't change about Rowan. A whole list of them. He's so smart - and I know every parent thinks that of their child - but the way Rowan has learned to manipulate technology at such a young age is really astounding. He's tender-hearted and wild. He sings and dances to all the 1960's Dick Van Dyke movies. He memorizes entire TV show episodes and tries his hardest to recite them, even if he only has a few dozen words in his entire vocabulary. He's artistic and creative. His eyes totally light up when I turn on Mumford & Sons. I love the way he tries to say his sister's name: "Suh-Cowt!" His complete obsession with monster trucks is pretty hilarious, if not sort of terrifying. (We're concerned that there will be one too many Monster Truck Rallies in our future. And one is one too many.) I love that he's independent & organized in his play. The way he tries to sneak cookies out of the pantry is sitcom-worthy. He still sits on my lap & holds my hand when we watch a movie.
There are some things you don't need keys for and that gives me respite and encouragement in between all the searching and lock-changing. The wine helps, too.
But, at the end of another long, arduous, one-foot-in-front-of-the-other day, he's my baby, and there's no peak to high or hell too deep that I wouldn't go to make sure I find & form every single key he needs.
Parents joke a lot that we're everything from zookeepers to accountants to housekeepers to chefs to cruise directors. It's all true. But you can add another profession to my list. It's harder and more tedious than it looks, but it's the job I might be most proud of:
I'm a locksmith.