A good (if long) and important read about autism. Must admit it is what DH and I have believed all along, but helpful to have more scientific backing and ongoing research that supports our views. (And, of course, it’s not just one boy’s brain we’re talking about, but catchy titles mean more readers…)
Category Archives: Autism
One of the hallmarks of autism is obsessive interests. Pkin has a few areas where this shows up. She also perseverates a bit (another hallmark) about completing “collections.” A collection can be pretty much any grouping of similar things — stuffed animals, toys, books…and Bath & Body Works products. She loves them. All of them. She would buy every last thing in their store if she could (except maybe candles — she’s afraid of candles ever since a birthday candle in preschool set off the fire alarm. We’re not even allowed to use them. Not sure what would happen if the power went out and we actually had to choose between using a candle and not seeing).
It started with an interest in the small hand sanitizers because her third grade teacher (her favorite) used them in class and Pkin loved the smell. She has always been a sensory seeker when it came to smells, so this was no surprise. That interest then expanded to shower gels and lotions and lip glosses and perfumes and sparkly body sprays and even sparklier body mousses.
DH and I installed another shelf this weekend so Pkin could put a few more pieces of her Bath & Body Works “collection” on display (and no, this is still not all of it). No one ever need worry about smelling bad at our house.
We still need another shelf (or two or three — or a small room) to fit everything. And as soon as we had something that would fit it all, she would surely buy more.
I’m sure some people would say we should put a stop to this — tell her she can’t buy more (at least not until more of it is used) and invoke the good ole standby to “put our foot down.” We see it differently. When you have a child who is interested in a very few and rather narrow group of things, sometimes the best thing a parent can do is help them explore those interests and, otherwise, get out of the way.
Pkin loves drawing. If she had her way, she would likely draw for 16 hours a day (with the remaining 8 being filled with eating sushi/noodles and sleeping). She sometimes perseverates on particular drawings (often hairstyles, sometimes eyes, occasionally clothes). And we, of course, encourage and support her in all of this. We take her to a manga drawing class every week (her favorite style), buy her sketchbooks and pencils and whatever else strikes her fancy. We’ve recently also been seeking to push her outside her comfort zone a bit.
We found a private art teacher who lives nearby (he teaches at an elementary school in our school district and his wife is a special ed teacher) who is working with her on using other media and drawing/painting/etc. in other styles. So far, she isn’t complaining about going and is actually producing some interesting pieces. A sampling of these is below:
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.
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…
Another day down and some new information learned — though I’m not exactly sure what it is. I wasn’t quite as diligent about what I ate today and I am definitely reacting to something. Just don’t know what.
We started today as we usually do on Saturday with a bit of breakfast before (well, actually en route) to Pkin’s manga drawing class. We didn’t really have that eating planned so I grabbed what was available and appropriate — cheese and seed crackers. All good.
I then dropped DH and Pkin at her class while I headed to the gym (I know, right!?! Twice in the same week!). Our plan was to go from her class to lunch at one of her favorite Japanese restaurants. DH and I were both very conscious of needing to get there early enough to ensure we were done eating by the 2-2:30pm-ish when Japanese restaurants in our area tend to close until dinner (I don’t exactly know why). Unfortunately, we never thought to check to make certain that this particular Japanese restaurant followed the same pattern as the other Japanese restaurants we know. You can likely guess the result of this — it didn’t. It doesn’t open for lunch at all on Saturdays. It doesn’t open until 3:30pm. We were there about 12:30pm. Oops.
Pkin was quite disappointed. And one of the challenging parts of autism is that having plans change in this way isn’t just disappointing like it might be to other children. It throws a wrench in everything. There was a plan and that plan created an understanding of chronology and set the routine for the day. And then the chronology and routine went wonky. While it may seem like a small change of plans to someone who doesn’t understand autism, it is actually quite significant (especially when the change of plans revolves around the subject of an autistic person’s perseveration — i.e. anything Japan for Pkin).
One of areas where Pkin has really improved over the past year or two is in her flexibility in such situations (flexibility is a key phrase in the autism-specific program her school is doing as part of a research program with Children’s National Medical Center so we actually use that word quite a lot at our house). It is still very hard for her, but she has found ways to work through it. She is able to verbalize how it makes her feel (for the most part, at least) and we let her feel it and talk through it with her. If we didn’t fully think through or plan something, we admit it and apologize. And then we try to find another option that will work. We don’t always have success with that — sometimes because there just isn’t really another option and sometimes because she won’t let us (like most people I’ve ever met, sometimes she just wants to feel pissy about something for awhile and fixing it wouldn’t let that happen).
This day, though, she was willing to let us try. DH happened to remember that at some random time a couple years ago we happened across a strip mall complex with a lot of interesting restaurants. He happened to also remember that it was on the same street we were on (except that it was a good 8 or so miles away). Pkin agreed to see if we could find something to eat there — so off we went.
By the time we got there, Pkin had fallen a sleep. We’re not sure if this is because she was actually tired and fell asleep because of the motion of the car (I do this all the time) or if it her bodies way of dealing with overwhelming situations like this. I watched her do the same thing at school last week when one of her tics (in this case echolalia of the name of the movie her class was watching in music class). After she said it a few times, the girl sitting nearest her moved away — leaving Pkin sitting with no one because even though I let them sit wherever they wanted (I was the sub), no one chose to sit with her — and she doesn’t seek people out to sit with them. After a few more times, another girl told her to be quiet. Within 15 seconds, Pkin was asleep.
We also thought this might be happening back near the end of 2nd grade, but before her special ed teacher could complete a functional behavior assessment to see if that was the case or if it was the result of a medication she was on, the school year ended. We took her off that medication over the summer and the problem didn’t recur in 3rd grade at all. She was put back on that medication near the beginning of this year when she was diagnosed with Tourette and it has made an enormous difference in her tics. But she is also now falling asleep at school sometimes. She is also encountering more stressful situations, though, as her gen ed teacher and, therefore, the students in the class don’t really understand. She’s also understanding more herself and noticing what other people are doing and saying in ways she often hasn’t before. The kids are all getting older too and, I suspect, noticing the differences more themselves (and certainly saying more about it — I’ve heard that as well. One of the mixed pros/cons of being at her school more often).
Anyway, we tried to wake her up to list off all the food choices, but she kept falling asleep — until we found the sushi restaurant. Jackpot! Wide awake! And all is well.
All this is a long and round about way of saying, things were thrown off and that threw me off. And I let my guard down. I was so glad we had salvaged this one and, I suspect, knew that tomorrow is my last day so somewhere deep down likely figured, “Eh! What’s a little bit of this or that going to do at this point?” So, I had a bit of DH’s ramen (wheat) and a little bit of soy sauce with my sushi (wheat and soy).
Later, I had some leftover chicken tikka masala. The other day it made me feel bloated, but I thought that was because I ate too much (which I did). Today, it made me feel bloated again (and I didn’t eat as much).
And this evening, as Pkin and I touched half the types of fabric in the fabric store in search of the exact ones she wanted for a couple projects (more on these once we actually start them), I noticed I was getting mouth sores. Was it something in the leftovers? Something from lunch? Something else? Unfortunately, since I didn’t do any of this in any organized and controlled way, I don’t know. You see, I’m living proof that having a PhD doesn’t mean you always make the wisest decisions.
So, tomorrow I return to what is, technically, my last day of the 21DSD focusing on keeping on track. I’ll stay on plan until the mouth sores are gone. And then I’ll actually introduce things on purpose and one at a time so I can tell what is causing which problems. Then it will be all about actually not eating those things anymore — and being OK with that. But that’s a different issue for a different post.
Breakfast: Cheese and seed crackers
Lunch: Sushi — and a bite of ramen
Snacks: Leftover chicken tikka masala
Dinner: Salad with steak, tomatoes, and onions
Here we are. One week down. One-third of the way through my 21DSD. And it hasn’t been a bad ride. My planning is paying off, my learning is making those moments when planning didn’t work end up OK, and my focus is keeping everything on track. Pretty cool!
One of the biggest lessons I’ve learned so far is that this is possible to do as a normal part of life. And today I added to my “I can do this” list when Pkin, DH, and I went to a movie. As is pretty standard with autism, Pkin has, at various times, had hyper-focused interests in certain things. For awhile, it was female names. DH and would sometimes spend hours each day locked in the same conversation with her:
Pkin: “Is Sally a name?”
Pkin: “Do you know anyone named Sally?”
DH/Me: Whatever answer was appropriate for whatever name we were discussing.
Her perseveration for the last year or two (the longest one has ever remained the focus) has been all things Japan. She is particularly a fan of manga and, to a somewhat lesser degree, anime. We actually found her a manga drawing class that she started a couple weeks ago (found when I was doing a search for a manga camp this summer with the intent that we would actually travel almost anywhere in the U.S. to get her involved. Luckily, this one is just a couple miles away!). And she loves Hayao Miyazaki and the work of Studio Ghibli.
DH and I remembered seeing a trailer for From Up on Poppy Hill, the new Studio Ghibli film, sometime earlier this year, but couldn’t remember when it was due for release. Last night, I just happened to mention it while we were actually near a computer and DH hopped on the handy interweb to find out. We were thinking it was sometime this summer. It was actually March 29 and was only going to go limited release. Another quick search found that there was one movie theater near us that had it showing on one screen (we live in a suburban area near a major city, which means we have, literally, a couple hundred screens nearby — but only one showing this particular movie). Considering that, we were thinking it probably won’t be sticking around there for long so if we want to see it, we needed to do it now.
So today — a day I had planned to stick close to home, do some work, and dig into a bit of gardening — we instead went to the movies. Usually, this would include a big bucket of buttered (let’s be honest, butter-flavored oil) popcorn and candy. Instead, DH and Pkin had some popcorn with real butter (it was that kind of movie theater) and I had some banana chips and almonds stashed from home. And it was fine! I didn’t miss the popcorn, didn’t mind when they shared a few Sourpatch Kids, and just enjoyed the film.
Imagine — you can actually live life and not include sugar! Who knew?
Breakfast: Almonds and homemade green-tipped banana chips
Lunch: [updated] Salad with chicken, salsa, sour cream, cheese, and guacamole
Snacks: [updated] Chai with coconut oil, plain Greek yogurt with cinnamon and walnuts
Dinner: [updated] Sausage patties and fried eggs
Today was the first day of school-before-school for Pkin. She is participating in a program called “Jump Start” where teachers review some ideas from last year and introduce some topics that will be tackled in this coming year so that students can get back into the flow of things…before they have to get back into the flow of things. We aren’t certain how Pkin was selected for this program (the invitation letter simply said she was invited), but we are guessing it might be some combination of teacher recommendations and standardized testing scores (we haven’t seen her scores on all of these, but we assume there were some issues — especially in math, which she calls her enemy).
As any parent of a child with autism can guess, getting Pkin ready to head to Jump Start was not an easy task. She is quite adept at using a calendar and so knows very well when the “real” first day of school is. She has even been lamenting how quickly her summer is going since almost when it started (often with many tears and extreme regret that she is “growing up too fast.” We haven’t been permitted to call her a big kid ever and comments about getting bigger are greeted with quite a nasty look.)
She has also recently started talking a lot more about being different from other kids. Though we’ve never hidden her autism diagnosis from her, it only recently had meaning to her. As I started substituting for special ed classrooms, she started asking more about who goes to special ed. And she asked if she is a “special ed kid.” We answered that question as we answer pretty much all of her questions — as honestly and openly as we can. She seemed to get it, though she doesn’t get why everyone else doesn’t get her (we’re still working on the theory of the mind with her. And we’ll likely be working on that for years to come).
She also seems to get that she just needs a bit of extra help in some areas, like a lot of us do. She doesn’t mind the help, but she doesn’t like the idea that that means she sometimes has to do things other people don’t. Like starting part-day school two weeks early…
Though we knew about Jump Start for the last 6 weeks or so, and were telling her about it from the beginning as we know she needs a long lead time for any changes in her plan or routine, it still seems to have come upon her suddenly and by surprise. As we prepared her backpack last night, there were at least three bouts of temper tantrums and/or sobbing most of which focused on how unfair it is that summers are so short and school years are so long. She blames the government. She wonders if they know how terrible it is for her. And she wants to run the government so she can change that. She wants to run the government so she can change a lot of things. She also sometimes says she wants her own universe so she can run it her way. Since DH once had business cards proclaiming himself “Emperor of the Universe,” this is not an unusual concept in our house.
Getting Pkin up, dressed, and out the door to meet her school bus this morning was a lot like I imagine it will be getting her up, dressed, and out the door when she’s a teenager. She mastered the stereotypical teenage attitude long ago (she’s had the teenage girl glare down since she was 4). She was cranky, whiny, snippy, and demanding. She was a handful. And we did our very best to just hug that little handful as much as she would allow.
As Pkin, DH, and I all headed off to the bus stop, she insisted on walking a few steps ahead of us and not saying a word. Once we cleared the crest of the hill on our street, we could see the bus stop…where one of Pkin’s best friends (one of her only friends) was standing waiting for the bus to Jump Start. Her pace quickened and there was just the tiniest bit of a smile on her face — for a second. Then we got to the bus stop where DH and I said hello to her friend. Pkin turned her back, without a word, and stood waiting for the bus.
When Pkin arrived home from Jump Start this afternoon, I asked some of my usual after school questions (honed, over the years, to be very specific and not open ended). And I actually got a few answers. I don’t know who her teachers are. I don’t know who else she knows there besides her friend. I don’t know what sorts of activities they did. But I do know that it was “OK.” I know they had a recess outside where she ate some of her snack and played on an uncomfortable swing. I know that they learned about facts versus opinions and “some math.” I know that she isn’t looking forward to going again tomorrow, but she also isn’t upset about it. And that is, after all, OK.