neil, meet everyone. everyone, meet neil.

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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.

Screw it.

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.”

garage

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’.

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38 thoughts on “neil, meet everyone. everyone, meet neil.

  1. This is indeed a wonderful community of people who “get it”. It’s always wonderful to meet another. Thanks for sharing your story.

  2. Hey Neil? You are a strong contender for Father of the year…at least Ryan’s year. From your strategy of distraction, through sweat and blood, all the way to the silver lining. Ryan’s blessed with a Dad like you. I get it. The challenge, the attempt, the failure, the surprise, the growth, the empathy. Thanks for sharing.

  3. I’m going to start working “ficky glass” into my window vocabulary.

    The more people out there who hear these stories and start to “get it”, the easier things get, both for parents and their Otherwise. A new voice is good thing.

  4. I get it, I get it, I get it.

    Going above and beyond into a world of frustration and panic just to see that look on your kiddo’s face. That look that says “she gets me.” (OK, “He” for you, Neil.)

    Kudos to you for tackling the nearly impossible for Ryan.

    And start your own blog, darn it! Your writing is great and your story was PRICELESS.

  5. Neil – this is your old friend from Ticker – you just WOW me everytime – an incredible father, an incredible Ryan, not enough tissues on hand to dry – please lets get together soon – Lou

  6. Oh Neil, thanks for sharing. And I have to say that I don’t just get it, I have lived through it. My son, who’s now 10, loved garages, too. And brown garage doors were his absolute favorite (In fact I just unearthed an old Mother’s Day card my husband made that had photos of my two kids, each with a talking bubble coming from their mouths — my NT son’s bubble said “I love you mom” and my other son’s bubble said “Let’s hear it for brown garages!”).

    When he was younger we’d hardly ever drive from point A to point B but instead weave through our neighborhood’s alleys to see as many brown garage doors as possible in order to as you said, reorder the world a little bit to keep him (and therefore us) calmer.

    In case you’re wondering, the garage interest faded and has since been replaced by numerous other so-called special interests, each unique in its intensity and logic and it is indeed sometimes hard to find the silver lining when they take over. But all we can do is keep trying. Stay strong…and keep writing!

  7. Only those that walk in the trenches can honestly say, we’d do the same thing. We don’t have garage doors on our list, but we have plenty of “garage doors” on our list, you know?

  8. Neil, you had me at ” a good thing, a bad thing, or just a fact of life on the spectrum of autism thing”. I get it, we all get it. Thank you Jess for sharing!

  9. Another blogger to bring me to tears? Ill take it where I can get it. :) To KNOW that I am NOT alone in these daily challenges is so uplifting for me and I know it makes me a better mother.

    A better person.

    A better teacher to “typical” children.

    I almost bit a guys head off yesterday at the fair when he pushed his two children past mine as he was standing in line. You see, hes not so good with lines and knowing when its his turn to go. He will either stand watching a ride and never take a turn or he will run to the front, oblivious of the other children in line.

    Anyway, I wanted to chew this man up and spit him out and yell and scream, “This is what Autism looks likes! Dont teach your children to ignore him as though he wasnt waiting in line.”

    Thank you Jess for continuing to be a light in my sometimes darker world. Thank you Neil, for not only “getting it” but for sharing it! It makes a world of different to know I am not alone.

  10. I get it.

    So who wants to make the cafepress t-shirts that say “this is what autism looks like, still think therapy shouldn’t be covered by health insurance”

  11. Thanks to all of you for such kind comments. I’m feeling inspired!

    I am like so many of you in that reading about other families’ experiences makes me feel connected. Glad I could share here.

  12. Neil – What a fantasticly expressive writer you are. I have a lot of feelings and thoughts about what you shared but what is still lingering with me nearly 4 hours from the first time I read your post is the raw purity of your love for Ryan. Your actions this weekend exemplify love in motion and it was a site to behold. Thank you for giving us the view . . .

  13. Jess – great choice of a guest blogger

    Neil – you definitely connected with those of us who get it and live it every day.

    This line in particular resonated with me:

    -It was as if an affirmative answer would have made everything all right, if only for a moment.-

    I often wish that I could freeze those moments when I can say yes in time and tuck them away to be pulled out at those difficult times.

    Get out there and write. You obviously are good at this and from the comments I’ve read above, you’ll have an instant following!

    Oh, and we’re Green-Green-Green-Glass

  14. Whoo, Neil. Joining the chorus here — you should definitely start a blog of your own. The blogosphere needs you. And my blogroll wants you to be its next autism-daddy-blogger.

    Exquisitely guest-posted.

  15. Jess – thanks for asking Neil to blog!
    Neil – I get it. Parent of a 12 year old girl with PDD-NOS. Thank you for your eloquent post and sharing your experience. Alas, no garage door here in Philly.

  16. Neil,
    Can I please, please tackle-hug you?! I thought I had the only garage-door fan in the whole world! Yep, minivans AND garage doors. And oh, I beat you for low-rent parent: imagine, no garage and no minivan! How many ways can I break my boy’s heart! We are right now vacationing with family who does have a garage door and the entire neighborhood is filled with garage doors. Our classification goes by whether the doors have cracks (roll up as opposed to raise up), whether they have windows, and what shape the squares are (rectangles, squares, etc.). He is in garage door heaven! I often wondered if it would dissipate if we actually had one … Thank you for sharing your effort at reordering the world for your son. You have my undying respect.

    And Jess, you are the best. Thanks, as in kindergarten, for sharing!

  17. Beautiful post, Neil. I know how your heart aches and breaks over and over as Ryan’s dad. Not to say it doesn’t swell with pride too… but geez is this hard work. Take care! and thanks for being braving enough to post.

  18. ‘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.’ Thank you, Neil. You describe something I wrestle with everyday. You’re a wonderful writer and I hope you start blogging!

  19. I love the way our kids see the world, even if I have to sometimes reorder my own thinking to appreciate it. I so get it. Jess, thanks for introducing us to Neil! I echo everyone who said you’d have a built-in following if you should start your own blog! Thank you for sharing.

  20. Neil,
    Thank you for sharing some of your story with us. Your son Ryan makes me smile, he reminds me of some many of the children I know who are on the spectrum. I love the metaphor of garage doors to people, if we just pay attention. The metaphor I love most is your garage door, I do not know if this something you were going for but it really struck me. Your garage door had appeared to Ryan to be a white-white-white-white. A boring nothing special garage door, in fact it was really not worth looking at because who really wants/needs to get to know a white-white-white-white garage door, I mean they are all the same are they not? Your revealing to Ryan that your garage is actually a white-white-glass-white is like a child with autism. Children on the spectrum appear to be your standard white-white-white-white garage door, nothing fancy, and no reason to look at them any closer, but if other actually took the time to look closer they would see that they are actually a white-white-glass-white. These children, like their garage door counterparts, are a special door, a more than meets the eye door, and if we take the time to chip away the paint covering the glass we are able to shine a new light into the garage and see things through a whole new perspective.
    Jess, thanks for allowing Neil to share this story, and Neil thank you for a simply story so rich with metaphor and meaning.
    Cera
    P.S. I know blog posting is old but I have become addicted to Diary of a Mom and all it’s story’s so I started from the beginning and am working my way through. (:

  21. From a fellow white-white-white-white, I want to tell you how lovely I think your story was. Mostly because of how hard you work for your son. (Also, did you curse a lot? My husband would have cursed at the door a lot.) Thank you so much for sharing. I get it too.

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  23. Awesome, awesome, awesome. I SO get this. I’m sure we all do. For me maybe it was that moment I took my son driving around our town to find “no outlets” because he just really, really loved them. Or our visits past churches with bells. The gleam in his eye when he actually gets to hear church bells ringing is so worth it…but then when I see him announcing churches with bells to complete strangers, who seem a bit puzzled, I wonder if I’ve been wrong to encourage him. Sigh…we know your world…

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