Category Archives: Diagnosis

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.

IMG_20141019_142017102

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.

Gradual Acceptance of the Seasons

Last time I wrote, I was lamenting our difficult morning meltdowns triggered by the changing seasons and the requisite outfit changes that go with them. Our mornings have gotten a bit more peaceful, but only because it warmed right back up and Mikey has been able to wear his beloved “number shirts” to school with his “fluffy pants.”

We continue to struggle with his pickiness about clothes. I know about Mikey’s sensory issues. He, in fact, has a Sensory Processing Disorder diagnosis and I know how this affects the ways clothing can feel against his skin. But the kid burns through fluffy pants like you wouldn’t believe. A pair of pants can change like *that* from “soft fluffy” to the dreaded “hard fluffy.”

This fall, we bought him 7 new pairs of fluffy pants and he’s already deemed 5 of those pairs to be hard fluffy, which means he’ll only put them on his body if Cody immobilizes his trunk and I slither the pants on to Mikey’s thrashing legs.

Sigh.

But he’s getting better at accepting that Halloween has passed and it’s time to buckle down and prepare for winter. He allowed me to hang Thanksgiving window decals this afternoon and we composted the rotten jackolanterns. Our uncarved gourds are still on the front steps, which is fine as it’s still decorative gourd season.

God forbid we pull down the tattered spooky drawing he made for the storm door. We still have to make daily recreations of the New Yorker’s Halloween issue cover, which features an orange moon with a bat in silhouette. Some days, knowing that his autism spectrum disorder causes his mind to perseverate and stick to certain things…some days this knowledge does nothing for my frustration level.

I want to shake his shoulders and scream, “Halloween was 19 days ago! Get over it! Don’t you want to make a hand turkey and eat stuffing?”

The worst is that Alex, with his budding language skills, has started noticing when Mikey has meltdowns. He’ll come up to me, point to his brother, and say, “Crying! He crying!” He’s sort of empathetic when he does this, but it mostly seems like he’s saying, “We’re all seeing this, right? He’s crying again? For, like, a half hour?”

Today we had a pretty peaceful day. He had a good day at school, wore clean underwear, and even agreed to a jacket. He allowed Alex to be excited about inflated yard turkeys as long as we called them “Halloween turkeys.”

Perhaps digging out the Christmas tree will really help him move along? Who knows what tomorrow will bring. I just know I’m washing the fluffy pants with the kitchen towels and praying for mild weather.

Renewal!

Hurray! It’s time to renew our medical assistance application! We got our big packet in the mail, 12 days after the date at the top of the letter. No matter–I set aside my Friday evening to review the information online.

At first I thought I’d have to do the whole thing on paper, because the computer insisted it needed either Firefox or Internet Explorer, but we were able to fool the state website into thinking Safari was IE. I think I would have rather taken all my crap to the library to access IE than to do it all on paper.

I spent a really long time looking up all the phone numbers I’ve ever had in order to answer their security questions–which of these numbers is one you’ve had in the past 12 years? I envied my parents, who’ve had the same phone number as long as I’ve been alive. Who even knows which phone numbers I’ve had?

I then spent eons answering questions about Alex, telling the state he is not a student, nor is he unemployed. Or is he unemployed? I mean, he’s not employed…but doesn’t unemployment imply an involuntary removal from the work force? These are the sorts of questions I juggled while I tried to also make the system understand why my toddler doesn’t have a state identification card.

I will say that the renewal seemed much easier than the initial application for the benefits. Hopefully, after they receive my email with our federal tax returns and Mikey’s latest psychological eval, we’ll be renewed with no hassle. I’m not anticipating that, though–the greatest predictor of future behavior is past behavior, right? (I learned that on Boardwalk Empire this week)

Past behavior indicates this shit will take me 2 months and at least a dozen phone calls. Good thing I have a light-ish work load in November!

The Definitive Graphic

A few weeks after we got our diagnosis, my friend posted a graphic online. It was one of those “your kid might have autism if…” graphics. I wish I’d seen it months earlier, years even. It took my breath away, because it painted a precise picture of my Mikey.

Screen shot 2013-07-01 at 6.38.52 PM

I look at it now and think about all the rationalizing I did for 3 years. “Oh, he’s just quirky,” I often said of his clothing pickiness or insistence on only eating cold food. “He’s zesty!” I said of his energy. I thought his fascination with belt buckles and lotion bottles was just endearing. Never did I see all these quirky things all grouped together before and never did I understand they were each warning symptoms of something larger going on.

Until the day of our diagnosis, I walked around quite certain my understanding of autism (which really did not extend very far beyond Rainman) was complete, accurate, and utterly excluded my son.

One thing I realize about our diagnosis is how very much it explains. I mean, it explains EVERYTHING that has been challenging for me since the day Mikey was born. Knowing doesn’t really solve or correct anything, but my God, understanding–having an explanation–makes navigating this so much easier.

I carried around this dark weight, feeling I was a shitty parent incapable of correcting Mikey’s challenging behaviors or the lack of impulse control/safety awareness that repeatedly puts him in harm’s way. I felt like the permissive pushover people accused me of when I figured out ways to support Mikey’s sound sensitivities or extreme hyperactivity.

And then it all just made sense.

So, here I’m sharing this graphic because maybe it speaks to another parent. Maybe someone will see it and recognize another child. Maybe it will lead to some explanations for another family. Maybe you’ll look at it and share a knowing smile with me because, come on? The spinning wheels? Right?

In the Closet With Our Diagnosis

Cody and I are in the closet regarding our (Mikey’s) diagnosis. We’ve told our parents and siblings, a few friends, Mikey’s school, and some (certainly not all!) of our relatives. Granted, we’re only 8 months into this party, but we often don’t feel like it’s our diagnosis to reveal. At this point, it seems most appropriate to put things on a need-to-know basis.

Our thinking is that the diagnosis, the word autism, marks our Mikey. It gives people something to think about him before they meet him, predetermines first impressions. Who knows what repercussions this might have on him as he moves along? We just aren’t ready to be totally public and stick a puzzle piece magnet on our car.

However, this has meant that for the past 8 months, I’ve felt a little bit lost in terms of my needs–my need for community and support and just to fucking vent about a meltdown or bureaucratic nightmare. I can’t update my facebook status or bitch to the neighbors or sometimes even explain why exactly I’m sitting in the middle of a parking lot holding headphones or pleading with my older son to just put on his fluffy pants already.

I’ve felt like almost everything out of my mouth has been some sort of half-truth at best or a lie in omission. We joined an online support group, which has been amazing, and we know a few other families with ASD kiddos. When I unload my burdens to them, I feel so very heard. I’d love to make it out to one of the many support groups available in my area, but (and I know this is a problem with the other parents I’ve met) childcare is sort of a nightmare situation for these types of meetings.

Not just every babysitter can handle bedtime with Mikey! Add Alex into the mix and forget about it.

So, I find myself here, spouting to the Internet at large as a way to both record and make sense of my many thoughts. I thank you for reading along.