I just wanted to take a moment and thank everyone from the North Carolina Assistive Technology Expo for a fantastic conference. Schuyler and I were made to feel welcome, and we met some truly amazing people, which is hardly a surprise by now. Our thanks to Chip Clarke and Dawn Haynes from PRC for their generosity, and to April Furr and my friend Elizabeth for making the logistics of presenting at something like this by myself with Schuyler even feasible.
It was a fun trip, despite the efforts of the TSA at the Raleigh-Durham Airport to ruin our return trip. (TSA Agent to Schuyler: "What's your name?" Schuyler: "Aye-er." Me: "Her name is Schuyler." TSA sarcastically, to Schuyler: "What, you can't talk or something?" Schuyler and I both: "No...") I never mind traveling with Schuyler, and she's got more patience for the inevitable inconveniences of flying than any adult I know.
She loves a rough flight, so when everyone else is white-knuckling, she's laughing her little head off. True story: When she asked me what was causing the plane to bump around, I told her it was a monster, because I'm that guy. She loved that answer, because she's that girl, and asked me the monster's name. "It's the Turbulence Monster," I said. Not five seconds later, the captain came on and apologized for the turbulence, and when he said the word, she looked at me in wonder and joy as if what I'd said just might be true. Thanks, captain, for that unexpected credibility.
It's funny, but in so many ways, I am reminded on a trip like this most of all that Schuyler is growing up, and into the young woman that I always wanted her to be. Happy, chaotic, funny, in love with everyone and afraid of nothing.
I had a realization today, something of an epiphany, really. It's one that I started to have, very tentatively, when I was writing the book, and I even wrote about it at the very end, although whether or not I always believed it is probably debatable. Today I realized that Schuyler is at a point in her life where there's no turning back. She's going to make it. She's not there yet, and not even close, but she knows what she has to do to get there, and there's a whole village of people watching her who literally will not allow her to get lost or fall through the cracks now.
I think I can see now that if something were to happen to me today, Schuyler would be okay. And that means the whole world to me.
The photo of you two captures Schuyler looking exactly like the picture by Debbie Ridpath Ohi. Head tilt and everything...
ReplyDeleteI'm currently editing my village. I read your post and others and realize that sooner or later one has to be that person we don't wish to be to get what is necessary.
ReplyDeleteI love her answer to the TSA guy.. "No"... No appologies, no explanations. That's how I deal with people now too.
That's a pretty wonderful epiphany to have. I'm kvelling for you.
ReplyDeleteHaha, the TSA thing (& countless variations of it) has happened to me as well. I don't think people... well, THINK, at times. TSA agent: "Excuse me? Are you deaf or something?" of course not thinking I could actually BE deaf. :P I always love the look on their faces when they realize they just insulted me with something I actually am. I'm 20 & it still amuses me & I really doubt it will ever get old, except for those days when it happens to me multiple times. Granted, days like that, it makes me angry & a little sad but I have found many ways to interact with people. I feel my life is richer than most people's because people have to work harder in some regards to communicate with me but that helps weed out those who really aren't worthwhile people anyway. I'm so glad you feel that Schuyler has a "safety net" should she need to survive without you---that usually seems like a parent's MAIN job (&hope as well) i- to have their kids be well-equipped enough to go on without them & I must say you have done an excellent job---- even with Schuyler being an extremely affiable monster-loving personality to begin with.
ReplyDeleteWow. What a revelation, and I am in wonder at the subtle way you slipped that into the post! You're both wonderful -- and so is The Mother!
ReplyDeleteThe turbulence monster. Bwahahahahah! love it. I may try that on Queen Teen, although I can just see her face as she glares at me and says, "That's not true."
ReplyDeleteTSA could be politer. But they are taught to try to talk to children directly and try to get answers from them so as to avoid a slip through of a child who is not with the person he or she is supposed to be with. A child to terrified to talk to them can be a red flag. Of course, they don't really know how to deal with kids like Schulyer. Not sure the best way to approach it for them.
ReplyDeleteI love her courage. She might end up becoming a pilot :)
ReplyDeleteAlso, the village thing? So awesome. I'm jealous. Over here it is literally all me with all three (yes, three kids with special needs) and it's really, really daunting sometimes.
Schuyler is such a cool kid.
Keep talking to us Rob. Schuyler is who she is directly because of who you and Julie are. She needs you more than you know.
ReplyDeleteWhat is that with the turbulence??? Mine loves it too!
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ReplyDeleteI saw this today and thought Schuyler might get a kick out of it. It's the Jonathan Coulton song "Re: Your Brains" sung in ASL. It has zombies and brain-eating, and the signs for those are pretty easy to pick up :)
ReplyDeleteAlso, it helps if I remember to include the link! http://www.youtube.com/watch?v=UQYjZc7gKXc
You saved her with your writing talent. YOUR FREAKIN' TALENT made it possible. Keep fighting the good, meaningful fight for the rest of 'em.
ReplyDeleteWhen I got your Twitter update about the TSA, I saw red. I still see red and think of many colorful explitives everytime I think of it!
ReplyDeleteI'm glad you both had a good time.
I can only imagine the comfort of knowing that Schuyler is going to make it. There are so many children that do fall through the cracks. The steps you and your wife have taken to ensure this doesn't happen is an inspiration to many.
ReplyDeleteOn a side note, here in NC the Department of Public Health has eliminated all of the Infant Toddler Assistive Technology Resource Center contracts. My son benefited from "Mighty Mo" for 6 months with a loan from one of these resource centers. On top of that, I was able to find a ton of information to assist him from the same resource center. These services now can not be reinstated without legislative action. The bill was sponsored by Rep. Paul Luebke. I can't help but think this will create alot more cracks for children to fall through.
Did you guys get any E. NC bbq?
ReplyDeleteSome people's children, huh? It's like commenting about people's weight. You just shouldn't go there and if you aren't sure, Don't comment!
If you have the time and energy it would be worth calling or writing to the TSA head honcho and reporting the incident. They are probably mandated to do trainings to teach cultural sensitivity. They screwed up! You and Schuyler were probably more gracious than they deserved.It would also help future travelers and get these public servants to act as role models, not bumbling clods...
ReplyDeleteTSA could be politer. But they are taught to try to talk to children directly and try to get answers from them so as to avoid a slip through of a child who is not with the person he or she is supposed to be with. A child to terrified to talk to them can be a red flag. Of course, they don't really know how to deal with kids like Schulyer. Not sure the best way to approach it for them.
ReplyDeleteChildren with speech disorders aren't all that uncommon. Unless this particular agent was new to the job, as in new that day, he should have been faced with this before. I suspect he has been, no doubt handling it with an equal amount of sensitivity.
Almost every day, Schuyler faces people who have the lazy expectation that everyone in the world functions just like them, and that if you're not in a wheelchair or don't "look funny", you couldn't possibly have a disability.
Anyway.
You should have told her God was making the plane bump around. Because he's mean.
ReplyDeleteI can't believe you passed up a chance to diss God.
I hope that you will find time to send a letter of complaint to TSA. There is really no excuse for not treating EVERY SINGLE PERSON with dignity. They have their procedures to follow, but there is no place for sarcasm or disrespect regardless of whatever personal pre/misconceptions they may have.
ReplyDeleteGotta love TSA (NOT!). I have parents of students who use SGD who have had issues with TSA as well... one mother took the child through, then realized she'd left the device at the start of the screening belt. So, she calls back to her husband, "Don't forget the dynamyte!" OOPS! I discovered I'm on their "no fly" list because of how my name is spelled. I have to carry a letter from Homeland Security so I can fly, but I still get questioned because I'm not supposed to know I'm even on the list. And I just recently received an updated letter that has assigned me a number to give to the reservation agents now. Its so much easier (at times) to take the train!
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