This Is My Phone on Tourette’s

This month has been a bit rough. I’ve been dealing with a couple fibro flares, Pkin’s anxiety has been on overload, and DH has been neck deep in end-of-semester chaos. We had family visiting, I had my official graduation activities for my PhD and the resulting celebratory party, DH and I marked our 20th anniversary, Pkin had her first ever strings concert and her first ever 5K, I subbed numerous times, DH dealt with a knee issue, we tried to get some new flooring put in part of our house (long story…still waiting), DH headed to Chicago for a conference, and just these last couple weeks — SOLs.

For those people not in the know, SOLs are the wonderful standardized tests all public school students here have to take from 3rd grade until they graduate from high school. It stands for Standards of Learning, though the other meaning is more accurate in my view (and you just have to wonder what group of idiotic bureaucrats didn’t notice that when they decided what to name it).

Pkin doesn’t seem to put as much pressure on herself about these tests as many of her classmates do — likely because DH and I have made it clear that we think they are stupid, useless, and entirely counter to any idea of meaningful education. We’ve told her we just ask her to do her best and are completely fine with whatever happens as a result.

And still — she’s been anxious about them. She doesn’t like tests and doesn’t like taking them. She also doesn’t like that we changed how she was taking the tests a bit this year. In the past, when she’s taken standardized tests of pretty much any sort, she’s been pulled to take them with a smaller group of students rather than her whole class. This is because her IEP sets forth different requirements for teachers reading directions, questions, etc. than would happen in gen pop.

This year is her first year taking these tests with her Tourette syndrome. For the other tests earlier this year (eCart, etc.), she did them in this smaller group. As the SOLs neared, however, her special ed teacher and I thought it might be best to try doing them on her own with a teacher. Her special ed teacher had noticed that Pkin was very aware of how her tics might affect others in a quiet testing room (and, likely, how much harder it would be for them to ignore it given the lack of other noise in the room). She thought that Pkin was putting so much effort into trying to control her tics that she wasn’t able to concentrate fully on the tests as a result. This would, of course, be exacerbated by the increased anxiety around the testing since anxiety itself often increases them.

So, taking the tests by herself seemed like a good solution. She would be on her own with an adult she knew (or at least was fairly familiar with) and who knew her and, therefore, she wouldn’t have to worry about holding in her tics. She could just tic away and take her test. Unfortunately, Pkin did not like the idea. She didn’t want to be alone (meaning the only kid in the room). She didn’t want to take tests with people she wasn’t as comfortable with. Mainly, she didn’t want to take the test without her special ed teacher (who is, basically, the main reason we’re making it through this school year in one piece mostly and haven’t pulled her for homeschooling).

We haven’t yet gotten the scores, so don’t know if it actually helped in the test taking. I did get a chance to talk with the teacher who was with her for her first two tests (and who had been her special ed teacher and/or supervisor for a couple years before). The first day she didn’t have many tics (it was also the History test, which is a subject she is more comfortable with even though she hates that they aren’t studying more about world history and culture). The second day, she had a bunch (the reading SOL). We don’t know if it is because of the subject (which she generally isn’t very stressed about) or because we had talked with her about how it was totally OK to let her tics out. I don’t know what happened during the tests this week (math — what she refers to as her nemesis).

All this is to say — there’s been a lot of stress and anxiety. And, as a result, we’ve also been seeing a lot more tics (as I write this, there is an almost constant chatter coming from Pkin’s corner of the room — a combination of echolalia and random whoops and shouts).

I guess, then, it shouldn’t be a surprise that a tic we’ve seen fairly often this year (biting — not of people, but of things) popped out again today. We’d had a batch of it earlier this month resulting in both pairs of her glasses being sent in for new lenses because she chewed on them and scratched the lenses so badly they were useless. (We didn’t realize that the first one was the result of biting until she told us the second one was and the company wrote to say the same).

We’d talked with her about other things she could bite on (chewies, pencils, this fabulous vibrating strawberry we happened to find when visiting family for the winter holidays, etc.), the importance of not biting certain things (things made of glass or other breakable substances, things that are expensive), etc. and hadn’t seen it very much since, so thought we were in good shape.

And then she bit my phone. She had asked me if she could play with it (she has games spread around pretty much every electronic device we own). Apparently, I handed it to her too quickly, it surprised her, stressed her out, and she needed to bite. Bye, bye phone screen.

Phone bite

Luckily, it doesn’t appear that she swallowed any of it and didn’t get cut. She felt awful about it (as she always does when one of her tics causes damage — whether to the phone or her glasses or the numerous books she’s torn or scrunched or the toys she’s pulled bits off of or…). It’s moments like these that help us to really understand what she means when she says, “I don’t mind having Autism, but sometimes I really wish I didn’t have Tourette’s.”

It makes us so sad to hear her say this, but we also understand where she’s coming from. We try to help her accept who she is and all that that means and do everything we can to make sure she knows we love her no matter what. But when she unintentionally destroys a new toy because her twitchies (that’s what she calls them) needed to pull off its tail or tears a page out of her newest manga because her hand needed to grab it, it’s kind of hard for her to like herself.

So I sew stuffed animals and we tape pages and buy her a chewable necklace and bracelet. We hug her (kisses aren’t allowed — that’s her Autism) and love her and try to help her love herself. And we keep on working on it.

Sometimes, that’s just all you can do…

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Filed under Autism, parenting, Tourette Syndrome

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