One of my favorite aspects of blogging is the dialogue that ensues long after a post is written. Some of it happens right here, in the comments. Some of it spins off between readers and leaves me far behind. And some of it – much of it, in fact – happens via delightful e-mail exchanges, rich with thought-provoking (and often post-provoking) conversation.
One such conversation started on Tuesday afternoon. I got an e-mail from my friend, Neil. Hmm, wait – is ‘friend’ appropriate, I wonder? ‘This guy’ Neil certainly doesn’t work. It sounds pretty dismissive. ‘Some dude who I’ve had a few really nice e-mail dialogues with’ is really clunky. I mean, try to say it three times fast. Or even one time fast. Oy.
Where was I? Oh, Neil.
Everyone, meet Neil. Neil, meet everyone.
I’m going to just let him take it from here, mmmkay? Take it away Neil ..
I am a long-time lurker here and a sometimes poster to the comments. I have also on occasion written and Tweeted about my own family’s experience with the autism spectrum, but I do not have my own blog.
I have two beautiful children, Ryan, 8, and Riley, 7, and an incredible wife, V. Our son was diagnosed with PDD/NOS just after his second birthday, and little in our home has been the same since.
I’ve never met or even spoken to Jess or any of the regular posters here, but I feel like I know so many of you.
I discovered Jess’s blog when she had an “In Their Own Words” piece published on the Autism Speaks site. I was amazed by her writing, and by the community that has developed here. I was also taken by how closely so many of the stories resonated. No matter how unique our individual children, there is a common thread to the autism narrative, as we all feel our way through this puzzling disorder and do our best to advocate for, educate, and protect our kids.
Jess’s post the other day about forgetting money for Brooke’s hot dog at the pool hit a little too close to home. I decided to share with her my own “best laid plans” moment from the weekend just past. That e-mail became an exchange and an invitation to guest-post the story here. I consider it an honor, and hope I haven’t lowered by too far the incredible writing standards here :).
Consider this a “diary of a dad”…
Did you ever do something completely outrageous, if only just to satisfy your special needs child? It’s like a moment when you surrender to autism, and you can’t decide if that is good thing, a bad thing, or just a fact-of-life-on the spectrum autism thing.
That was me this past weekend.
I was trying to put a positive finish on an up-and-down weekend. I had cringed as Ryan struggled to follow instructions at the hockey clinic he attends. I beamed when he came off ice smiling, proudly telling me how sweaty he was from the hard work. I took it like a kick in the gut when I asked Ryan what his friend from special needs camp might like to do on a play date and the answer began with “well I like garages and he likes traffic lights…”
Ryan does like garages. He classifies all houses by their garage doors, and he describes the doors by naming their color/window scheme, starting from the bottom up. There’s “brown-brown-brown-brown” and “white-white-white-glass” and “white-white-glass-white” (because the windows aren’t always in the top row. Who knew?)
There’s even “ficky glass” — his word for windows that aren’t square but rather are some fancy shape. Oh, and “T glass,” or windows with four panes instead of one.
Apparently our garage door — “white-white-white-white” — is the lowest of the garage low-rent district.
A week ago, when we were talking about garage doors (in an attempt to distract Ryan from his anxiety over the brutal traffic coming back from the Jersey shore), I happened to mention that ours was actually “white-white-GLASS-white,” which has much more status in the garage world. The windows had been painted over by some previous owner.
Ever since that moment he’d been asking me if we could scrape the paint and transform our garage. It was not a project I was enthusiastic about, for a number of reasons. Nevertheless, on Sunday I finally ran out of excuses.
The clincher came when Ryan agreed to go with me to the store to get the supplies. He NEVER agrees to go to the store, even if it’s to get him something.
I relented. I was ON BOARD. So what if it was 90 degrees and 1000% humidity and I would be scraping paint inside the unventilated garage with the door closed? (Did I mention the windows were painted on BOTH SIDES?) Damn it if I wasn’t going to win Dad of the Year, or die (likely from paint-chip inhalation) trying.
A few minutes into the job I realized how futile it was. The paint was stubbornly clinging to the windows. I had to keep shooing Ryan away from helping for fear he’d inhale some of what I was trying to block with my 99 cent painter’s mask.
Finally, I got a single pane cleared — on the outside. Dripping in sweat and covered in paint flakes, I decided that I would do the inside of that one window and stop. Then I’d let Ryan come up with a new name for the resulting garage scheme.
I moved inside the garage to do the other side. I shut the garage door and started scraping away. I got it about half done when I pushed a little too hard and the glass shattered. My heart sunk. My anger spiked.
I was angry to be soaked in sweat, inhaling God knows what, scraping stupid paint off a stupid garage door window because if my son was “normal” I wouldn’t be there. I was angrier still that I wouldn’t be able to deliver for him. I threw down my scraper and threw open the garage door — conveniently forgetting that in doing so I was raising the glass shards directly over my head. The glass came crashing down on me. I felt my scalp. My hand was covered in sweat, and more than a little blood. Luckily it was just a nick.
I went inside. For about the tenth time since I had started, Ryan asked if I was all done, and his look just broke my heart. It was as if an affirmative answer would have made everything all right, if only for a moment. I think as special needs parents, we always are trying to deliver those moments. Every once in a while we can reorder the world to suit our kids.*
I told Ryan the bad news. I feared a meltdown. He took it well, but was disappointed. I went back outside to tape some cardboard over the shattered window, and then finally allowed him to see my work.
He looked it over and pronounced the result OK. We now have a “white-white-SHADY GLASS-white” garage. In the words of the Jeffersons, we’re “movin’ on up.”
I told this story to several co-workers Monday. They got it but they don’t GET it. And that’s OK too. Maybe the next time they see a child with an “odd” interest or one melting down in public, they’ll think twice about their reaction. Maybe they’ll start noticing exactly how many different types of garage doors there are, too.
The silver linings are out there, they’re just sometimes, really, really, REALLY hard to see.
* ed note .. The italics are mine, because I loved the simple, torturous beauty of the line, ‘Every once in a while we can reorder the world to suit our kids’. It made my heart hurt. I GET it. Down to my toes, I get it. If you do too, please don’t be shy. Leave a comment and let Neil know.
Because, ultimately isn’t this what the dialogue is about – finding and sharing with those who GET it?
Thanks so much for telling your story, Neil.
p.s. I think this makes us friends now. I’m just sayin’.