Christopher’s 9th birthday was this past weekend. If you regularly read this blog or you know me, you know that Christopher has severe regressive autism. While birthdays come with mixed emotions – including memories of babyhood and thoughts of how quickly time passes – for all parents, autism puts this on a whole other level. As time goes by recovery seems more elusive. And the older Christopher gets, the more apparent his differences are (a 3-year-old in diapers who can’t talk is a lot less noticeable than a 6-year-old in diapers who can’t talk). Kids try to approach him to play and think he’s just ignoring them and that breaks my heart. Plus, he’s getting bigger and stronger and that makes it more difficult to manage. And every year brings us closer to aging out of the system and losing services and me getting too old to take care of him and then dying and a whole bunch of other things I don’t want to think about, but have to.
I remember his first birthday. He didn’t have autism then. He was perfect and happy and social and meeting every developmental milestone. I was a new mom in a new house with another baby on the way. I was so excited about the future and all the possibilities it held.
By his second birthday, my life had turned upside down. Christopher has regressed into autism and we were learning about diet changes and therapy and insurance and supplements and a million other things. I also had a colicky seven-month old. Still I had no idea what I was in for. I knew recovery from autism existed, so I was going to do that super-fast and get on with my life. Ha!
I never thought 7 years later I’d still be immersed in this crazy life. That’s partly a good thing – there is no way my brain could have handled knowing everything we would go through. And it’s not like we haven’t seen a lot of improvement. Christopher is now potty-trained and eating so much better and I can take him places and he’s even saying a few words. It’s still really really hard. But those small victories and hope for more are what keep me going.
Still, I can’t believe he’s 9. I keep trying to remember what 9 felt like, and what I was thinking about at that age. I remember that I loved to read – I was secretly reading Stephen King’s “Firestarter” and scaring the crap out of myself – and roller skate, and I missed having friends like I did before we moved to a new town. Christopher isn’t interested in books (except to rip them up) or skating or friends, at least I don’t think so. He’s been ripping up anything made of paper all over the house, eating caterpillars outside, and throwing everything he can over the deck (the lawn guys think we are insane).
I am certainly not the same person I was nine years ago. I feel like I’ve aged about 50 years in that time, and I’ve definitely learned enough lessons to last a lifetime. I know so much more than I did when Christopher was diagnosed about 7 years ago. I know that there is no “window” of recovery and the brain is much more pliable than neurologists realized. I know that lots of kids with autism improve – I’ve seen it myself – some to the point of no longer meeting diagnostic criteria. And I know there is not one road to recovery; there are many paths to getting better. Even though I’ve tried a million things with varying degrees of success, my autism to-do list is still long. And I know that Christopher has already done things that we were told he would probably never do. Who’s to say he won’t be able to do it all one day?
So this is my wish this year – not for a specific milestone to be met or skill to be learned. It’s not that I don’t have high expectations for my kid or that I don’t have faith in him. I do! It’s just that this road has been anything but straight and narrow. It’s winding and bumpy and it’s a hell of climb. So I don’t want to have a narrow view of what Christopher’s progress looks like either. He is an incredible person and there are so many possibilities. My wish is for continued hope, that we have enough small victories and steps forward to keep going, to keep believing – and to keep hope alive.
Happy Birthday Christopher! I will never stop believing in you and I will always have hope for you and your future.