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.

25 comments:

Laura Alexander said...

I'm celebrating Henry with you, Mary. Thank you for sharing.

kristen spina said...

beautiful

maggieth said...

Wow. I am so glad I stumbled on this and your blog this morning.Thank you, and love to Henry!

Gretsmom said...

What a lovely tribute to Henry! I am his Grandma Jeannie. He has enriched my life. He has informed my work as a school psychologist. Now that I am retired he informs my volunteer work in the schools. And of course, he makes me smile and brightens my days. I love you Henry!

kirsten said...

Obsession vs passion. Yes.

Katy Bee said...

YES!! Thank you, thank you, thank you!!!

David said...

I gladly celebrate your friend and teacher Henry. I also continued to be totally blown away by your beautiful insights and your being a teacher to me and so many others. Thank you Mary and give "Bud" a hug from me.

David said...

The above comment is from Helen C and the fact that it says from David only tells you how much more I need to learn!

Kris Naumann said...

Henry WOW. Mary as usual beautifully written.

Doble Sol said...

thank you :)

Anonymous said...

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.


This is so very important and I needed it today. Thank you Henry for teaching some much to so many. Thank you for sharing this with us. From this blog post I have just gained so much as I take the nest step of our journey with my sweet boy who also happens to need a little help navigating this world. He too loves Disney and we will watch a movie this weekend in honour of Henry.......
Peace

Anonymous said...

Amen, and thanks to God for making us all unique

Vicki said...

Henry, through MOM-NOS, you have taught me so much and helped me reach for heights I never knew I needed to be looking for. Thank you and may you know and feel the love that we are all sending to you today and always. <3

alison.mcknight said...

HI, I too have a Henry of the autism tribe and he too is a Disney Dude through and through, he is by my side scrolling through Small world ride throughs' on YouTube while Big Hero 6 is on tv, he has several dvds in his hand and the boxes will be neatly stacked in his room. It sounds like you and he are made of the same stuff Henry - so script away and enjoy your day your way. Love and hugs to you and your family. xxx

Anonymous said...

The Henrys and the Buds and the Brookes of this world have taught me so much. Love and hugs to them all.

Julie Fry said...

Hooray for Henry and the joy he has spread!!!

Anonymous said...

I have a Henry who goes to school with Henry! And how lucky he is to have met him! The way people can connect with no words at all is what Henry has taught me. One time on a school field trip, I chaperoned and it was getting time to leave and all were tired and talking and talking, but Henry wasn't much for words at that point. Waiting to get the group together, I found my son and Henry just quietly communicating by bumping their hips together over and over. Deliberately and with a togetherness and an "I get you" that did not require talking. That day sealed my love for Henry although I knew I loved him all along. And boy does my son love Henry too!

Rick Stephan said...

I never met Henry. But I know his father. And I know those words you wrote will always be remembered.

Rick Stephan said...

I never met Henry. But I know his father. And I know those words you wrote will always be remembered.

Autisms Edges said...

I've always felt this way about you and Bud. Apparently I was getting Henry, too. Thanks for this beautiful post.

Jill said...

Here's to Henry! And to the joy he brings! I celebrate with you.

Lynn Kapell said...

I found this thru Diary of a Mom. Henry - I will celebrate you and pray you continue to celebrate life for a very long time.

Mr. Aaron H said...

Thank you for your beautiful words about one of my favorite people. Henry is without a doubt one of my favorite people I have ever had the pleasure to know. My thoughts and wishes are and will always be with him and I'll always have a key for him whenever he asks for it.

Tiffany Dozier said...

I will go and watch "Zootopia(latest Disney film) to celebrate Henry. So important what you said about labeling preferred activities as "passions," instead of "obsessions." When my youngest was diagnosed with ASD, his fascination with letter blocks and spelling, was called an "obsession." But it's that which has helped him to become such a good reader! We celebrate the positive:) Thank you for sharing your story about Henry.

Anne Payne said...

Your writing has been such a gift to me, and I've shared it with others to try and help them understand my wonderful girl with the hair dryer brain in this world full of toaster brains. Thank you, Henry, for being you!!!