A couple of weeks ago, we were visited by out of town friends and went to The Joy Bus Cafe for a late breakfast. (I had the Eggs Benedict…..hands down, the best, because who makes hollandaise at home?) Seating is a challenge if you are a party of more than 4, so we are often seating Addie on the corner of a table anyway. She’s not much of a talker (read: nonverbal) and needs help eating (read: maximum assistance for feeding). A hug from Jennifer is always a good thing and it had been a while since we were out in the community doing something normal.
Someone sat across the narrow aisle and Addie couldn’t keep her eyes to herself. She can be really nosey if she’s interested in boys between the ages of 15 and 26 or the food ordered at the next table. The very nice lady at that table just happened to work with special needs kids at a local HS and coincidentally, in augmentative communication. So, she was aware and engaging. We had hellos and ohthatsnice and it turns out that while this lady was very nice and quite talented, I’m sure, she was curious how it was that Addie has such nice teeth (of all things…..yes, Virginia, people notice teeth). With a disclaimer, she wanted to know how that was. Addie has always been agreeable to having her teeth brushed. Yes, it’s work. Yes, most parents are done micromanaging teeth by the time their child is 16. No, we aren’t spectacular or amazing. Could I offer a parent’s perspective? I asked. I had to. I also had to speak over the roar of this busy cafe and impart a point of view on a (maybe) sensitive issue. Teeth can be generally issue-y for most people. Perfect teeth in this society is a thing. Passable teeth in special needs kids will make or break interaction with peers and guarantee participation with adults they work with. With that thought in mind, I offered. She was considering a job change to some other environment, because she thought parents were neglectful in cases where these teenaged kids teeth were on the judging block.
Then the collision happened.
“You likely can’t imagine what it is like to brush a nonverbal child’s teeth. Everyday for decades. Sometimes…..there are other things going on. Special needs parents seem to attract more than one big life hurdle. So, there will be divorce and cancer (collision #1)….we all have a list of unimaginable, unfortunate happenings that end up reflected in bad teeth, you see. When there’s a medical thing , everything else is in danger of toppling. Relationships fail. Hospitalizations. Overwhelming bills. Job loss (no one takes care of sick disabled children…the parents have to figure that one out) …..housing loss. The isolation is real and can happen in a blink. Please don’t lay judgement of these kids based on what you think you see. And if it really bothers you, start a dental care program at your school. When things go wrong – and they do – the first thing to go is that extra grooming.”
Special needs high schoolers are embarking on the last few years of socializing in a learning environment. If, in other’s minds, they are not worth the work to the end, the whole community has been failed.
I introduced her to Addie’s dad, my husband. He’s a recipient of The Joy Bus and (I think, I hope) it made sense to her. I wish for everyone to have passion in their job and I hope she can find that with those kids at that HS. For all those kids need maximum assistance from all of us.