As we know, the Thursday before ESY started J had to go to Urgent Care because his thumb hurt. The X-ray indicated there wasn’t a fracture, but there was a sprain of some sort. The doctor fitted him with a thumb immobilizer that has become J’s best friend and confidant. Add to this his penchant for wearing band-aids for no good reason other than to remind himself that he’s alive and breathing and you get a pretty alarming picture.
We’ve had the same bus driver for 80% of the time J’s been attending school here in WV. By now, four years and multiple bandaids later, she should know that our son has a flair for the dramatic. This is the kid who will buy bandages EVERY SINGLE TIME we go shopping. I’ve told Dada to invest in Johnson & Johnson since we’re helping keep the company going strong.
Anyone here have a child in the Spectrum who isn’t comforted by deep pressure? Compression garments? Weighted blankets? Pillows piled on top of his/her body? Cocooning? Individuals in the Spectrum feel comforted by these things, and J is no different. That he takes it to the point of looking like a Civil War walking wounded is an entirely different matter.
If you’ve never seen J and you witness this “look” of his, you’ll wonder what is wrong. If you ask, I will gladly explain the whole thing to you, especially if you’re uninitiated in the intricacies of Autism. I will even, if you feel that my explanation is insufficient, invite you to call the proper authorities so they can do an investigation. I KNOW what it can look like to those who don’t know what J is like.
There’s another little quirk of J’s that poses a problem: echolalia. J will repeat the very last thing you said, and this can be considered leading the witness. If you, as an adult who should know he’s in the Spectrum and has trouble communicating, ask “are you hurt?,” you will get HURT as a response. “Again?” will get AGAIN. If you ask him “was it a rampaging elephant?” J will respond with ELEPHANT. I don’t mind people asking him, showing him pictures, asking him to point as long as they understand that J doesn’t have the complete ability to answer spontaneously 100% of the time, and that you are probably leading him to the answer you want. That is why, when we go shopping, and he points to a general display of items, I tell him FIND THE ONE YOU WANT. I step back, and I wait patiently until he gets that he is the one who has to choose.
Asking a question about whether he is hurt again in front of a busload of special needs students who might go home and say “J is hurt again” is not a very good idea. Some kids will repeat what they hear. Other kids will embroider and filigree what they hear. It might not happen, but it also MIGHT happen. It’s a possibility…
Every single person that works with J is welcome in our home. We actually make a specific invitation to come and see how J lives, what our set-up and our system is at home, what our expectations are, and how he navigates it all. We remain in constant contact with staff from school, and we try to make sure they understand what we’re aiming for here. Whether they take us up on it or not is entirely up to them, but we wouldn’t ask if we didn’t mean “come over and see what we do.”
I love when people are genuinely concerned about my son’s well-being because it tells me they care, and they will tell me if something seems fishy. I don’t mind people asking me questions, and wanting to make sure that he is being treated properly and respectfully. What I do mind is when people call out, from inside the bus, asking J if he is HURT AGAIN!!!!???? in front of a busload of impressionable kids who cannot process the situation with the clarity of their neurotypical peers. None of these kids can ask J “hey, dude…are you ok? Is something happening at home?” and then -as concerned friends- take it to a grown-up for follow-up. These kids can only repeat it at home in a way that their parents won’t be able to interpret based on their knowledge of us, and of J.
Discipline doesn’t mean mistreatment, and we don’t take advantage of J’s inability to communicate when we scold him. We explain why we’re upset, and we do our best to get him to understand when he’s done something inappropriate, dangerous, risky, rude, and so on and so forth. Our biggest problem, perhaps, is that we work gradually to wean him off the comfort items he cherishes and we respect what they mean to him. I always let teachers, staff know when he’s really hurt, and how serious it is; I always inform the teacher if he is sick, and what treatment he is undergoing. I don’t do this because I am afraid of misunderstandings but rather because J cannot explain for himself how he’s feeling or why, and what’s being done to help him.
I am J’s voice, and I will speak for him when I have to, but I will also allow others to question what I say because I have nothing to hide. Echolalia is a dangerous thing because not everyone understands how to ask questions of a person who resorts to it rather than to spontaneous speech, and J’s privacy should be respected even in cases of extreme concern for his safety. A neurotypical child questioned about his/her well-being and safety will not always be upfront about the situation, especially when it’s done in a public and potentially (to them) embarrassing manner. Asking the child/adolescent/adult in a more private setting, establishing an environment of trust and safety will create a better opportunity for sincerity and confidence.
J’s fine. He’s healthy. His thumb has healed and we’re working with the timer so he leaves his beloved thumb immobilizer off for short periods of time throughout the day, BUT he does feel his hand needs to be controlled. I don’t know why…maybe it’s hereditary OCD, or maybe it’s that splash of bipolar disorder that dwells in my mother’s genes as passed down through the generations. I have to respect what he thinks that brace is doing to protect him from himself…and I will work on alleviating his concerns in any way I can. If, for the time being, J thinks the brace is necessary, then the brace is necessary. It may very well be that it goes the way of the boxing gloves, the Rasta hats, the whole milligram, the three-quarters of a milligram, the half of a milligram of med…or maybe, like Slinky, it will stay as part of his everyday needs and supports.
I can live with that. I accept that it’s the way it is for now and might be for a long, long time… But ask me, please. Don’t assume and unwittingly spread that J might be in danger… Ask me. That’s what I’m here for…