Category Archives: Symptoms

Eyes

As you can see in the cover photo for this blog, Mikey has always tilted his head to the side to play with wheeled toys. Therapists tell me this relates to executive function, and it’s something common among kids with ASD. He continues to do this, but I’ve also noticed a ton of squinting lately.

Really, the past five months. He squints when he’s building with Lego, he squints looking at screens, he squints when he reads. He keeps passing vision tests at the pediatrician and screenings at school, but worry simmered just beneath my surface.

Just when I had decided to call an eye doctor about it, the school nurse called to tell me Mikey failed his stereo/depth perception screening. She said she administered it several times, because she’d never seen a kid fail just that and not the other aspects of the vision screening.

I decided to call a developmental optometrist whose office is about a half hour away. I’m not entirely sure what that means, to be honest, and I already know the person will suggest a vision therapy not covered by insurance. I also know that I won’t be making regular drives up to this office to receive expensive vision therapy not covered by insurance. And maybe I don’t believe in the therapy?

Basically, I’m a little worried about voodoo pseudoscience, but I also know there’s something going on with my son’s eyeballs, and I want to learn all I can and try to help him.

Thankfully, the doctor had an opening on a day my mom is in town to stay home with the other boys, so I’ll just have to pull Mikey out of school early and he and I will get a special date together as we trek up to Wexford to learn about his wonky eyeballs.

Tumultuous

November! November! I shake my fist at you and bite my thumb at you, sir.

November, where it’s 72 degrees on Friday and 19 degrees on Monday, 30 all week, and then slated for 60 degrees again next Monday. Who wouldn’t have tumultuous behavior with changes like that afoot?

Mikey has had a hard month. Some timeouts in specials. Some over-energetic behaviors and rough bodies at school. The kid I think Mikey is maybe bullying? He beat him up a little at recess.

But it’s all sort of ok still. Our BSC says all the kindergarten boys are acting antsy this month. The calm and peace she noticed in the classroom has given way to buzzing energy, barely contained by anyone. So it’s not just Mikey! That makes it all so much better to me.

Mikey had a bolting incident, which left my blood frozen in my veins. Unlike the previous incidents where he just made way for the street, he tells me this time he was just trying to be in the front of the line. You see, Mikey was able to verbalize that he gets anxious at the back of the line, walking behind all those slow walkers.

But he doesn’t want to be first in line, because the first kid in line has to hold open the next door and go in last, which gives him the same anxiety. His teacher told me she was letting Mikey walk second in line, but felt like that was special treatment. I asked our BSC to remind the teacher that Mikey is entitled to accommodations like this.

It’s not really special treatment. It’s an accommodation for a kid with autism to enable him to function in his learning environment.

I hung the kids’ adventure garland (cards with winter-themed activities for each day of December) and have been talking about how winter will bring some stability–some freezing cold homogeny of grey, grey days, but stable nonetheless.

Also, we bought a trampoline. So that’s helped a lot of things on the home front! Hibernation will be a little less intense this winter, which is good because I anticipate another boatload of snow days.

“No Behaviors of Concern”

We had two attempts at Mikey’s IEP meeting in as many weeks. Each meeting was two hours long. I am still trying to figure out how I feel about them.

The first meeting was desperately uncomfortable. My advocate reminded us that the school is required to provide a copy of the evaluation report for us to review two weeks prior to the meeting. The meeting date was only set 9 days in advance and I had to ask for the eval report, which seemed to surprise them. Things went downhill from there.

I kicked off the meeting by asking where the information about Mikey’s sensory screening was located in the report. I’d read it many times and it was clear there was information missing. People from the school side began scrambling around, printing paperwork, shuffling forms, dashing into the hallway to whisper.

It became very obvious something was wrong, someone was in trouble, and we were just sitting there waiting to move on. Cody and I sat there for 2 hours, taking turns rocking our newborn, while we paid a babysitter to stay home with Alex. Cody used his last vacation day from work, a day he reserved from his abbreviated paternity leave.

Eventually, the program officer stopped the meeting. She said the school was wasting our time, apologized for that, and said we had 10 days to try again before the evaluation expired and we had to begin the 6-week process from scratch.

That put us in a really tight spot because we had to sacrifice some of our…I’m not even sure what the term is, but we had to suck it up and pay for MORE childcare, take more time from work, and spend more hours on the phone and reading through revised, properly-completed documents.

The school had not completed any of the paperwork correctly. None of it, from the invitation to the meeting to the signature page to the evaluation itself. Our advocate actually asked if the school team had ever completed an IEP before. Her question was met with silence.

SO yesterday, we tried again. This time the program officer conducted the meeting and asked us if we minded whether school personnel attended as observers so she could “model” what she expects from an IEP meeting. Yikes! I felt very uncomfortable entering the meeting, but the tone was light and professional and things went well.

What made me happiest was hearing how things are going so WELL for Mikey. His classroom teacher reports that he is meeting mastery in 30 out of 30 categories for his “report card.” The same report card last year showed him scoring in the lowest range for 30 out of 30 categories.

Mikey has no behaviors of concern. Mikey is interacting with peers in an age-appropriate (if brusque and strikingly honest) manner. Mikey responds to teacher instruction. When his attention wanders, he requires no atypical interventions to get back on track. In short, his teacher views him the same as everyone else in the class.

He does not qualify for special education.

Because he has no goals requiring specially designed instructions, he does not qualify for an Individualized Education Plan.

Quite a different picture from what was painted in June, when we were told the school recommended he be moved to an autism support classroom in another school!

So what do I make of this?

My son has a 504 plan in place to make sure he gets accommodations for some atypical behaviors (he gets to take breaks to use the trampoline in the resource room and has a special area in the classroom where he can decompress periodically). He is otherwise just a regular kid.

So why have I spent the past 5 months going through this process?

I’m not sure whether it’s a question worth pursuing or if that would just lead to increased frustrations.

Searching for Gold

Cody sent me the most beautiful image the other day as I was away at a baby shower. Our neighbor had brought our boys some Canadian dollar-coins from her recent trip, and Mikey loves the golden Loons. He keeps thinking I’m saying “doubloons” and that I’ve actually given him pirate coins.

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So, adventurer that he is, he donned this fine outfit to go in search of golden coins.

This week, we are working our way through his evaluation report and meeting with his “team” at school to talk about what to do next. I feel much like him, searching for gold. I’m reading about him staying on task 60% of the time at school, which is very typical for a kindergartener. I’m hearing the school psychologist saying she sees Mikey performing like a typical child.

I’m reading about him testing in the superior range on IQ tests, on the cusp of very superior, so we all know he is a bright kid. He’s testing average or above on all the evaluations and assessments he’s being given at school.

I’ve been picking through the evaluation report, digging for gold, trying to make sense of everything that’s happened or that I’ve learned since our June meeting at school. I feel like my son is doing well. I feel like he has good supports at school. I see nuggets pop up, like Mikey picking his nails and his face, but these things don’t affect his learning or the learning of others.

I read about him lingering back by the teacher at recess at the beginning of the year, but progressively interacting with peers as the schoolyear continues. I read about his teacher giving him language to interact better with his peers.

Cody and I have to sign some paperwork on Friday to determine what sorts of specially developed instruction we think Mikey needs. It’s hard for us to separate out what his teacher is doing instinctively from what needs to be spelled out on paper and signed by the team.

All these decisions feel so big and so huge and so important. I wish I had magic goggles and a fancy vest/cape to help guide me! Instead I’ll have to rely on my mama heart.

Change is in the Air

I wonder if Mikey is so drawn to October because there is so much change around this month–and he hates change, but that doesn’t mean it’s not interesting. The weather changes so much in Pittsburgh. On Tuesday, it was 84 degrees and sunny. On Wednesday, it was 64 and windy.

The food changes so much in October–we are suddenly presented with pumpkin everything. Last year this made him gag, but this year he’s feeling adventurous and likes pumpkin waffles (but only the ones from Aldi). And of course, there’s candy all over the damn place. Cody took our boys to the builders’ workshop at Home Depot and they came home with THREE BAGS of candy. Three bags!

The world around us changes visibly here, too. The trees flame red and orange almost overnight. I think they peaked as we drove home from my sister’s wedding in late September…but then in the same month, these same leaves fall down and scatter the ground and everything becomes slick and wet and unfamiliar. Or else crunchy and crisp and also different.

For a kid who thrives on routine, October must seem a confusing mess for the senses. This year, his body is responding in a way that is familiar and frightening to me.

His oral/facial sensory needs have increased dramatically. His fingers are bloody from biting the nails down well below the tops of his fingers. A school report from the psychologist reveals that he is just constantly, constantly touching his face and also pressing his hands and feet against things. His poor body just can’t get enough stimulation it seems.

We scheduled an interim appointment with his psychiatrist to discuss how this might be related to his medication. The medication is still functioning in terms of controlling his impulses. He’s gaining weight, eating well, having peaceful days. He’s not anxious or enraged. But when he wakes up in the morning his energy levels just flame and shoot out of his body. There isn’t enough in the world to quench his thirst for everything…food, sensation, pressure, sound, all of it. And then there’s his face and his nails.

Cody and I are trying to decide if we think these side effects warrant adding an additional medication to his tiny body. I’m so reluctant to do that. I wonder if the side effects are harmful for him, emotionally or physically, enough to warrant more drugs? I’m going to order a trampoline for our house and see if that helps.

For now, I sit in waitful worry. Maybe this will be his seasonal shift and we’re seeing it early. But maybe we’re in for the roughest November we’ve had yet?

Exfoliating

Mikey has been responding to his medication lately by really tugging and picking at his face. A lot! His teacher observed this and suggested adding a face washing work to the repertoire at school. She didn’t add this as something unique to him, just something else for everyone to do. He went over to it immediately and has been doing that work every day. She sent along a picture of him exfoliating vigorously. I love it!

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What a great example of an intervention school can and did implement seamlessly that helps him have a better day.

Dude-venture Weekend

Cody was invited to a bachelor party in Philadelphia this weekend for a close college friend. He really wanted to go and I really wanted to not be left alone here in PGH with both our kids. We asked my parents (who live along the way) if they could take one or both of the boys, and my mom said she’d love to spend some special time with Mikey.

I initially sort of wish I’d pushed to send the two-year-old…the irrational, caveman-brained toddler who eats his boogers and hands me live spiders and cries for 47-minute intervals. But we sent Mikey off to his grandparents, who planned a delightful weekend for him and texted me questions all week in anticipation of his arrival.

He’s been obsessed with wooden tokens lately (because we get them when we bring our own bags to Whole Foods and the kids get to put them in the little treasure chest by the door, marking our chosen charity to receive the $.05) and my mom bought him a boatload at Michaels.

He’s also obsessed with the numbers 8 and 18, so my mom painted the tokens with these numbers, just for him. Then, she made plans for her and my dad to take him to the antique auto museum, where I’m sure he got to look at more wheels and engine parts than he could ever begin to describe to me.

But Mikey didn’t know any of that was happening! As he heaped a bag with his brother’s babydolls, toy cars, a “dude diary,” and his beloved copy of The Wonderful Wizard of Oz, Mikey was just excited to spend time with his grandparents. He’s so comfortable at their house and they dote on him and he very rarely has meltdowns under the loving haze of their undivided attention.

This afternoon, my mom sent me a picture of him playing in a bin of kinetic sand (of course she bought him kinetic sand!), where he’d been singing and yabbering for 45 minutes. It makes me sad that we don’t live closer to them, because I have such great memories of spending time sleeping over with my grandparents, too.

Meanwhile, Alex and I are having a really quiet and uneventful weekend. Uneventful meaning…things are so predictable with him. And even when he cries for 45 minutes, I know that if I distract him with a marshmallow, I can eventually get him to stop. And if I don’t do this, he’s just going to cry. He’s not going to bang his head off the wall until he hurts himself and he’s not going to throw his body down the stairs or come after me with the sharp end of a corn-cob-holder.

It’s just so much easier to parent that kid. Maybe because I’ve been to this rodeo before? But I find myself verbally prepping him for all the upcoming transitions, and then I realize I’m just sort of bothering him while he’s trying to play trucks all by himself. He’s like, “ok, Mom. You already told me we’re going to a birthday party later. We’re good.”

I even changed my mind about what I was going to make for dinner and it didn’t matter! Then, I waited until we were done eating to decide what we’d have for dessert. Just like that! We opened the cabinet and made a choice, and it was fine and we didn’t have to make a list first or discuss it. We just ate the damn Oreos.

So this weekend is really a break from me having to be ON so much. I get to bring my B-game, and it’s more than enough parenting skill and boy! That’s relaxing.

Mikey is such a remarkable kid. He spent most of Friday describing to me the difference between a trachea and an esophagus, for heaven’s sake. I sure am glad he gets to spread this joy to other adults who love him, so Alex and I can spend a weekend where I learn more about what makes him awesome, too.