Friday, March 18, 2016

Time and time again

It's that time of year again. The swallows are returning to Capistrano and I am sending an email like this:

Dear Bud's teacher,

I'm sorry to hear that Bud has been having a tough week at school. I have to admit, I'm not entirely surprised. As I think we've discussed before, Bud typically struggles after the Daylight Saving Time change. I'm not sure if it's because his body is adjusting to meds at a new time, or because he's having sleep disturbances related to the time shift, or because he's feeling dissonance from being asked to do one thing when his biological clock is telling him that it's time to do another. I suspect it's probably a combination of all of that.

Whatever the reason, whether we gain an hour or lose an hour, it's inevitably dysregulating for Bud. I'm hopeful that things will improve once he's fully adjusted to the time change. Please keep me posted.

All the best,

MOM-NOS

I have to say, I don't blame him a bit. Is there anyone who doesn't get thrown off by Daylight Saving Time? And as for the issues at school, as my friend Kiki says, Bud is just actually doing what the rest of us really want to do.

Let's hope the coming weekend gives us all a much needed re-set.

Please note: The information in this post is shared with Bud's express permission.

Thursday, March 03, 2016

For Henry

I want to tell you about my friend Henry.

If we're connected on Facebook, you may have seen some posts from me asking for thoughts and prayers and a universe of good wishes for Henry, who was diagnosed with a brain tumor last April. It has been a long hard ten months, and Henry is very tired. So today, though I want you to continue to send him thoughts and prayers and a universe of good wishes, I don't want to talk to you about cancer.

I just want to tell you about Henry.

Henry and I have never been in a room together - we have never actually met - but I know him. I know him on a heart level, which in my world is the only level that really matters. I love this boy more than I can possibly express.

I was introduced to Henry when he and Bud were six years old. His mom Gretchen and I had both recently started blogging about our sons and their autism, and when I started reading about Henry, I felt like I'd found our tribe.

Because here's the thing: of all the children I have ever known, autistic or neurotypical, Henry is the one who always, consistently, beautifully, mindbogglingly reminds me most of Bud. Before I knew Henry, I'd encountered other kids on the spectrum, and though I saw glimmers of similarity and recognized areas of overlap, I'd never found anyone who was quite like Bud. Until Henry.

By looking at Henry and seeing Bud, I was able to recognize that many of the things I'd written off as quirks unique to Bud were actually things that were related to his autism. I began to see that many of the things I might otherwise have labeled as issues or problems were, in reality, essential elements of who these boys were and of how they were wired. For the first time, I was able to recognize, by comparison, that my son was on a very typical path of development for his particular atypical brain.

I met Gretchen and Henry in 2005, at a time when autism was just making its way into the popular press, mostly through dark stories weaving tales of misery and hopelessness and despair. In those days, if you were new to both autism and the just-emerging world of social media, it was easy to get distracted by misguided people trying to peddle "cures" or convince you that you needed to save your child through full-time models of compliance training and dangerous interventions like chelation.

But luckily, I found Gretchen and Henry, and as we compared notes, I felt empowered to reject the scare tactics and recognize that, really, at their core, our boys were just plain cool. And, before long, before we'd ever heard the word "neurodiversity," we discovered a whole new paradigm for looking at autism. We discovered that it held gifts. And joy. And connection.

As I watched Bud and Henry progress in parallel, I was able to recognize milestones I might otherwise have missed, and I was able to see beauty in the smallest of movements. Because of Henry, I was able to view Bud, and Bud's autism, in a totally different way.

From their earliest days, Henry helped me to see that both Bud's pronoun reversal - his "you don't want to go to the playground" when he didn't want to go to the playground - and his use of scripts from his most beloved tv shows and movies were important stepping stones on the path to language acquisition.

He helped me to understand that hands are important communication tools, and helped me to see that sometimes when people put their hands on their ears, it's not because they're trying to escape; it's because it helps them to engage.

Henry helped me learn that there is power in choosing whether to frame something as an "obsession" or as a "passion," and that respecting an individual means respecting his passion. (He also helped me to understand that DVD cases and the papers they contain are as important - and sometimes more important - than the material that's on the DVD itself.)

He helped me to learn to respect that to a collector, there really IS a difference between the DVD you already have at home and the DVD of the same name that is begging to be checked out of the library.

He helped me to learn that challenging behavior is not a sign of a lack of progress, and that sometimes we need to take a step backward before we can move ahead. He helped me to learn the value of having space to regroup and time to develop.

Henry has helped me learn and learn and learn. 

In the ten years that I've known him, Henry has made me laugh, made me cry, and made my heart soar. I am a better parent - a better person - because I know him.

So, here's what I need you to know. If I have ever written anything that has made you think about autism differently, offered a different perspective, or sparked a new idea, then Henry has had an impact on your life, too. My understanding of autism and my understanding of Bud are inextricably linked to Henry. Though he doesn't know it, Henry has given me a gift beyond compare.

So can you do me a favor and help me celebrate Henry right now? It doesn't matter how you do it - post a comment here, give a "like" or a "love" or a "wow" on Facebook, share this, write a post of your own, watch a Disney movie (Henry's favorite), or shout to the sky to give thanks for this boy. Just celebrate him powerfully - celebrate him long and loud and hard, until the earth starts shaking from the joy of it.

I love you, Henry, and I always, always will.