When someone knows autism better than you
Outside of Steve, J, W, and me, there are three tiers of people who understand J’s autism.
The first tier is made up of our close friends, family, special ed teachers/paras, and coaches who initially knew nothing about J’s brand of autism but feel a connection with J and ask Steve or I how to best interact with him. They often go out of their way to try to find out more information about autism and because of their interest and determination come up with their own ways of reaching and teaching J. I love the first tier. They make our lives so much easier. They help us bridge that gap between the autism world and the neuro-typical world.
The there’s the second tier–friends (and sometimes family) who know J, but don’t necessarily know much about autism. They’re great in the sense that they are very tolerant–they understand that autism can mean odd behaviours and social interactions, but they’re willing to play along. J is great with working the second tier crowd–in fact he gets away with a lot of behaviours that the 1st tier does not put up with. But hey, we parents love the second tier too because we will take any acceptance and inclusion that we can get.
And then there’s the third tier–The third tier is the rest of the world. The Target/Costco/Hornbachers general public. Often the third tier includes medical professionals and specialist. The third tier can be a tricky group to navigate. Theses people see J enough times to recognize his face in a crowd, but they don’ really know what’s going on with him. If J is acting “odd” there just isn’t enough time at the checkout line to give an explanation. In the cases with the doctors and professionals, there’s also not enough time for an explanation about J’s autism, because we’ve got 15 min or so to talk to the doctor about whatever else we came in for.
And then there’s J’s dentist. By all rights he should be in the third tier with the rest of the medical professionals. But after this week’s visit, I’ve decided that he just might be in a tier of his own. In fact, he may have surpassed me in the knowledge and navigation pertaining to autism. This dentist might just possibly know more about interacting with autistic children than me.
At J’s appointment Wednesday, I came prepared for the whole spectrum of autism responses. We practiced having a mouth prop at home by holding a pair of rounded salad tongs in J’s mouth. I even stuck his electric toothbrush in his mouth while he had the tongs in his mouth. For the day of the appointment, J brought a DVD of choice (because at this dentist, he actually has a DVD player for kids while they get their work done–unlike our previous dentist). I also brought J’s headphones–something J doesn’t really need or use anymore. But hey, it’s the dentist and there are plenty of terrifying sounds going on around your head when the guy in the mask and his assistant are hovering over your face.
When I explained the items we brought from home, J’s dentist and looked skeptically at the headphones. “Does he really need those?”
“No, but I brought them, you know, just in case.”
“Hmm.” I could tell he wasn’t excited about the headphones. I’ve had a few moments like this in past visits–where I try to anticipate the dentist’s “weaknesses” in interacting with J (because it’s inevitable when you’re interacting with the third tier). Every time J’s dentist tolerates my suggestions–but by now, we’ve been enough times that I’ve realized he does know what’s going on. And he does have his own strategies because he works with kids–all ages all abilities–all day every day. And he’s seen even more of the spectrum than I probably have. And though he tolerates my “insertions” or “explanations” I’ve gotten the sense that he just might know a little more about this than me. Which is a first.
“But, you know, he’s not planning on using them and we don’t even need them unless it goes really bad,” I said.
“Yeah,” he replied. “I think he can do this without them.”
And sure enough, he was right. This dentist has a system–a way of talking with J, showing J every single device on his hand before he puts it in J’s mouth. HE HAS THE MOST CALM, REASSURING VOICE I HAVE EVER HEARD EVEN WHEN J STARTS TO STRESS OUT. (I should take notes). He works with J a predetermined, perfectly predictable 10 seconds at a time, gives him a break, and then does does 10 minutes of work. In fact, that’s what this whole visit was about. A practice run, going through all the tools needed (mouth prop, water pick, water suction device, cotton) for J’s real appointment in a month and a half for when he needs that cavity filled. And here’s this dentist, spending a good half hour of J, teaching him about the devices in his mouth. Speaking in calm tones, not getting frustrated with his anxiety.
“I’d like one more visit with him before the filling,” the dentist said to me.
“Yes, I think that’s great– you know, he did pretty good the first time we took him into the dentist (the old dentist). Until the numbing part. The needle was okay, it was the numbing that freaked him out.”
The dentist just nodded, as I talked. “Well, yeah, that’s exactly what I was going to suggest for the next time. We were just going to work on the numbing. I’ll just put a little swab of local anesthetic on his cheek and gums so he can get used to the puffiness. We actually use an extra strong topical anesthetic for this–we have it specially made. We just want him to get used to it–without the needle–so he can understand that his mouth won’t be like this forever. We can’t exactly replicate the process, but we want to preview as much as we can.”
WOW. These are all the things I would have asked for if I knew I could even ask for them–and he’s beat me to it, because he’s done this before. He’s seen it before. For the first time ever, I’m working with a professional who actually knows as much about autism as me, actually applies his professional skills with kids with sensory and anxiety issues on a regular basis, and because of that I’m actually working with someone who knows J just as much or even more than I do in this circumstance.
This is first tier and beyond.
When we were done, J got his prize from the vending machine, and I pulled out my credit card to pay for the visit. I was informed there was “no charge,” and “would I like a plastic straw and suction straw head to take home and practice with?” “Would I also like to schedule the same hygienist as the one J saw today so he can be familiar and feel comfortable with all the people in the room leading up to the filling?”
Yes, my friends, this is first tier and beyond.
