Taking Things in Stride

I keep making lists of possible blog topics on small pieces of memo paper and then losing them. I suppose this is a metaphor for something, but I couldn't say what.

A month or so ago, we had Stow re-evaluated for Early Intervention (or First Steps, or whatever the 0 to 3 early development program is called where you live). He'd been getting speech, OT, and developmental therapy before we moved, but it took a herculean effort (and several months) to get things started here in our new town. Fortunately, he improved A LOT over the 12 months of therapy he did before we moved, so I wasn't panicked about how long it took for things to fall into place here. I was actually starting to think maybe he didn't need the extra help anymore.

But, then we had the evaluations and he qualified for just about everything--weekly occupational, developmental, and behavioral therapy as well as speech and PT consults. He even got these (just today):

Stow-approved colors and dinosaur design.

Proudly modeling his new AFOs (Ankle Foot Orthoses)--and, OMG, who can resist those chubby toddler legs?

See that white circle highlighted by my deftly-drawn yellow arrow? That's a "potato chip pad," and I am pretty sure it will become the new bane of my existence much like Pink P's glasses did. There is no way we are going to be able to keep track of two little Pringle-shaped pieces of foam. No way.

To be honest, I thought Stow would never wear these. But, when he tried them on for the first time, I pointed out that they made him look like the robot on his shirt (and, yes, I totally dressed him in his favorite robot shirt for this very purpose). He loves robots so immediately agreed with me. Then, he quite willingly wore the braces out of the doctor's office and into the car. After that, he refused to take them off when we got home despite the fact that the smooth, hard plastic turned the braces into ice skates on our hardwood floors. He didn't even want to take them off for bed. So, I guess that's one less thing to worry about. (Now I just have to figure out where to get shoes big enough and socks long enough to work with these braces--so far, I'm 0 for 3).

Sometimes people ask me if Stow is on the autism spectrum like his brother (this, by the way, is a rude question). Therapists sent to evaluate him always assume he isn't. Then they do their evaluations and change their minds. I don't know whether he is or not. Do I think about it? Yes. Do I worry about it? Of course. But, as our old (beloved and much missed) doctor used to say, "It doesn't matter either way. You're still going to do the same things." And, she's right. Since Sky's diagnosis, we naturally do things differently with all three kids. We offer sensory breaks and places to crash. We eat and sleep well and make sure their schedules are well-structured. We assume non-compliance doesn't necessarily mean defiance. We slow down. We listen better. We get the therapies they need when they need them. It's not always easy, and we make plenty of mistakes. But here's the thing: in the end, I know that no matter how things go for Stow (or Pink, or Sky), we're probably going to figure out how to take it in stride.




UPDATE 3/7/14

I found not one but THREE pairs of shoes (on sale!) that work well with the braces. Stow's thrilled because two of the three pairs have Planes characters on them. Sometimes I totally rock (and other times I fail miserably, so I suppose it all works out in the end).

There May Be Something to This Alien Thing

I've written several times in the past about Stow's various developmental delays. The worst of these has been his speech delay. Stow's been a pretty quiet guy most of his life. As a baby, he didn't babble. At 12 months, his silence was punctuated only by the occasional "aah, aah." By 14 months, we had started weekly speech therapy sessions, and gradually he started picking up words ("mama," being the main one).  By 15 months, he seemed to be making progress, but every time he got sick, he would lose some or most of his words, sometimes reverting back to only "mama." This gaining and losing has been our biggest worry, by far. 

Here's the thing about having a kid who doesn't really talk: a lot of times, you don't really notice he's not talking. Instead you think, "What a laid back kid. I'm so glad we were blessed with such a mellow baby!" I can't tell you how many times I realized I was taking advantage of the silence to gather my thoughts instead of engaging him. It took me a long time to realize his silence doesn't necessarily mean he's just super zen. 

Some people try to tell us that Stow's silence is "just because he's the third kid." I'm sure having an older brother who's on the autism spectrum and an older sister who's a bit of a drama queen makes it harder to get a word in edgewise, but I don't think that's all that's going on.  It's more like there's a lock on the part of his brain where his words are stored, and sometimes he can find the key and sometimes he can't. Whenever he gets sick, the key gets lost and  he loses words. I suppose this is true of all of us when we're really sick, but even with a fever/cold/ear infection/C. diff he can be playing around energetically but just not talking. 

So, you know, he's been doing speech therapy every week for about six months now. And every week, he says a word or two the therapist hasn't heard before, but he neglects to produce most of his other words. Plus, he rarely manages to imitate a modeled sound or word. And, at the end of each session, we schedule a session for the following week with a shared but unspoken sense of fear that nothing will ever change. 

That is, until today.

Today Stow produced thirty words, some of them old, some of them new, some of them spontaneously, and some of them when asked. He even repeated words that were modeled to him. 

Thirty words in one hour! 

By far the most exciting one for me was "eye." He pointed to Rody's eye and then his eye, and then he said, "eye." I'm sure it doesn't sound like much. But, until today, he had never acknowledged a part of his body. Ever.

The speech therapist was floored by his performance. I was floored by his performance. It's like he's a different kid. At this rate, our therapist be out of a job in another couple of weeks. 

But here's what I want to know: Has he just been holding out on us? Is it because the C diff is finally under control (thanks to 4 weeks on some pretty serious medicine--who knows what will happen when he goes off it) and he's finally well? Is it the changes in diet? 

Or, has he been abducted by aliens, too?

Crash Helmets Optional

Stow's OT ran another sensory assessment of him. Generally, I'm not a fan of these assessments because I always tend to overthink anything that is multiple choice. Plus, whenever I take any kind of test aimed at producing a useful profile, I can't resist trying to outsmart the assessment. That's how I ended up with a career profile in high school that said I was most suited to becoming a minister or a butcher.

So I filled out Stow's sensory profile on my own but then decided that was a stupid thing to do since not only am I bad at these things, but I also don't spend as much time with Stow as Ren does. So, I started over and did the whole thing again, this time in careful consultation with Ren. The end result looked like some kind of football playbook.

We must've done something right, though, because the profile confirmed everything we'd suspected. Stow tests as having low registration and a propensity for sensory seeking behavior (much like his older brother, sigh). Remember how infant Stow lost weight and had severe ear infections without fussing (link)? You know how super chill and zen he always seems to be (link)? Low registration.

The low registration stuff's actually not so bad (well, except for the fact that Stow's clearly not engaging with his world quite like he should be). But this is where it gets interesting. See, sensory seeking behavior in toddlers is hard to miss. Think Evil Knievil in a diaper (okay, be honest, how many of you did I lose with that cultural reference?). A toddler with low registration and sensory seeking behaviors is a toddler who likes to crash. A lot. If you come to our house, you will get head butted, and it will only hurt you. I promise. This week alone, Ren, Sky, and I have all gotten a good blow to the face from the head of a certain thrill-seeking one-year old. Tonight, as Sky wept through the fat lips his little brother had inflicted upon him, I reminded him that the best offense was a good defense.....No, wait. That's not it. The best defense is the best defense. Duck and cover, friend. Duck and cover. That, or invest in a good helmet.

So Can I Title This Post "Little Baby Penises" or Will That Get Me in Trouble?

I'll bet you've never sent an email like this to your doctor:

Dear Dr. Parsons,

I've taken a picture of Stow's rash as it keeps getting worse, and I wonder if it needs attention before our appointment next week. It's a picture of his genital area, and I didn't want to send it without making sure you don't mind having something like that sent to your email. Let me know a quick "yay" or "nay," so I know whether to send it. Thank you!

Sincerely,

MOE

In case you're wondering, she said she'd be more than happy to look at my baby penis pictures if I felt comfortable sending them.

Heck, yeah, I feel comfortable sending potential baby porn to my doctor late at night. You know why? Because not only did she give me her e-mail address in case I had questions, she also checks it and responds to inquiries after hours! On this particular night, she wrote back with a promise to call in a salve prescription for us the next morning.

Those of you out there with kids who don't have special needs or who aren't constantly sick with bizarre and scary stuff probably think the doctor's crazy and I'm an over-needy mom. But, those of you who have experience with this kind of thing know just how incredibly amazing this doctor really is. I can't tell you her name, because, well, this blog is anonymous, but I just want you to know that it's in large part because of her that we've figured out a lot of what's going on with Stow. By being available after hours, she makes it possible for me to keep up with my kids' illnesses and still do my job. And, more importantly, she's helped me stay sane more times than she will ever know.

May you all be as lucky as we are.

A Thousand Tiny Bombshells

Stow had his first speech appointment today. In usual fashion, he was happy, curious, and engaged with the therapist who visited our home. He pointed and grunted and squealed and vocalized some vowels--pretty much his entire repertoire of communication.

Toward the end of the session, against my better judgment, I asked, "So where does his current communication fall? What age is it comparable to?"

"Six months," the therapist responded.

Six months.

Stow's fourteen months. Though you might not know it. He doesn't really talk. He doesn't really walk. The therapists tell me it doesn't mean he's on the autism spectrum. But he's got low muscle tone, motor planning issues, and speech delays. People tell me not to worry. That I am overreacting, maybe even projecting things onto Stow that aren't really there. I hope that's true, but somehow, I doubt it.

It feels like the last fourteen months have been filled with a thousand tiny bomb shells. Some of them just words. Harmless words. Words like: "Six months." Each phrase seems so innocuous. Individually, none of them are catastrophic. But combined, they threaten to destroy our very sense of well being, our ability to right our ship and navigate our way into another day.

But, then, just when I am about to be overwhelmed with this nagging sense of despair, I encounter tiny glimmers of hope. My children giggling. A bright blue sky. A good night's sleep. A joke from Sky. A picture from Pink P.



And I decide that maybe, just maybe, everything will be okay.