The Fog is Lifting

We've had a rough stretch. The lack of sleep, combined with Moe's increase in aggression and what behaviorists call "non-compliance" (aka brattiness) has been exhausting. We've been on lock-down, my chest tightening whenever I had to take Moe anywhere. Our outings became limited to speech therapy, gymnastics class (recreation therapy), and the occasional quick, only-the-necessities, visit to the grocery store.

This is crisis mode. We hadn't gone out to eat as a family in a couple of months, something we used to enjoy doing most weekends. Moe tried to calm himself with sensory behaviors, like spitting and intense screaming. Even playing in the backyard seemed overwhelming for him.

Earlier this week, the fog started to lift. He slept through three of the last four nights. This weekend was pleasant, in part because I had book club on Friday night and went to the city to see Wicked on Saturday. But it wasn't just that I got to step away from the madness. Moe seemed almost back to himself. He was gentler and happier. He ate better and didn't fight me every time he needed to get dressed or put on a new pull-up.

Amazing clouds on the way to the city

The shift was subtle. Moe still screamed a little. He pulled my hair once - hard. But it wasn't constant. He spent time snuggled on the couch flipping through a magazine. He even let Jelly share the blanket as they laid toe to toe on the couch watching Team Umizoomi.

Right now, he's giggling with his therapist and asking for more back rubs and tickles. He's listening and behaving better.

I have no idea why. These cycles come and go, and I spend a month or so wondering what changed and just when I have my theories lined up, they change again. And every time, once I begin to see clearly again, I'm reminded that this is the cyclical nature of Moe's development.

Maybe this is how all development works. With Moe, it feels more extreme, though it probably isn't. It seems that way because his protests come in the form of screams and scratches instead of whining and shouts of "you're the meanest mommy ever!" Behavior is communication, and yet, in the thick of it, it is hard to hear what is being said.

His smile returns

Searching for Answers

When Moe was first diagnosed, our developmental pediatrician, Dr S, ordered some blood tests to look for genetic abnormalities. Moe had had a rough appointment already, and was ready to go, so we didn't want to do the tests that day. We asked Dr S if the tests did find anything, would our approach to intervention be any different. She said no, so we decided to wait. Eventually the order expired and we never had the tests done.

Last year, as part of one of the research studies at Stanford, Moe had to get a blood test. It ended up not being that big of a deal, so I thought about calling Dr S to re-order the tests. Finally, last week, I sent her an email. I also asked her if she thought an MRI could be helpful. She said the MRI isn't indicated, but ordered the genetic tests.

I'm not sure why I want these tests done now, over two years later, but I've been feeling quite frustrated with Moe's very slow, and not necessarily steady, progress. Every autism book I read, even the ones without the miraculous "my child no longer has autism" endings, show children who make pretty significant progress. Even though I can see small changes in him, Moe's deficits in the major areas of speech, attention, and impulsiveness, seem not very different (or perhaps even more severe simply because Moe is bigger) than when we first started.

So this weekend, we took Moe to the lab and had the blood tests done. Moe hated it and cried quite pathetically the whole time. Jeff took him in while Jelly and I stayed in the waiting room. We could hear him and Jelly kept saying "Moe's crying. Let's go help him." I knew he wasn't in pain. He just hates being restrained in any way. Moe barely flinches at shots, but can't stand when I try to cut his fingernails. When Jeff and Moe were finished, Jeff confirmed my suspicion. Moe was quite upset before the needle even made an appearance.

And now we wait for the results. I'm more anxious than I thought I'd be, though I suspect we won't find anything unusual. If we do, we'll have the answers as to "why" and we may have a better understanding of his likely progress. And even if the results don't change how we approach Moe's interventions now, new research is coming out all the time. Many parents have long suspected that there are a number of autism sub-types, and being able to classify each child's particular type of autism may help direct - and develop - the most helpful therapies in the future.

The Small Picture

We often tell ourselves to "look at the big picture." In business, for example, it makes sense to look at the larger competitive landscape rather than get caught up details of a particular product design. But sometimes, the story is in the small picture.


Moe doesn't talk, and it is sometimes hard to look past that. When we started speech therapy two years ago, we thought for sure Moe would have some language by now. And if I focus on that, it feels like he hasn't progressed at all. But as our OT always points out, Moe is changing. He doesn't chew as much as he used to. That nasty spitting habit he developed at the start of the school year seems to have all but disappeared. It is hard to see that going from biting to spitting to whatever is going to come next is progress, but what is important is that Moe is different now than he was even a few weeks ago. Change signals development, and that's what we want to see.


Moe's speech therapist at school sent an email the other day. She's noticing change in him as well:

• Moe is much more observant this year! He is really watching and interested in speech activities. Last year it took much more effort to keep him engaged. This year he is focused and engaged in activities.
• I am modeling the words (CVCV reduplicated words such as "mama, dada" and animal sounds "baa-baa, moo-moo") and using cued speech to exaggerate the consonant sounds.  During this activity, Moe watches intently. Sometimes he smiles, and he uses a contact point to touch each card. On a few occasions, he has mouthed the consonant.
• During snack, Moe picks up his desired food, then is asked to locate the correct matching icon from a field of 3 (receptive task). For highly desired food items, Moe is doing well choosing the correct picture regardless of placement. For less preferred food (even if he chooses it initially), he tends to choose the picture on the left.  Again he understands the process of choosing the picture, placing it on the strip, handing it, and touching each picture.
• Playful sound imitation. Moe has attempted to imitate "ball, more" during the last month.
• Various speech activities (such as songs, books, and toys that go with the theme) - Moe is watching the activities, and uses gaze shifting between the materials and me. He is watching modeled words, and touches items when asked and given a modeled prompt.
• Non-verbal imitation - Moe requires initial hand-over-hand, then can sustain the motor movement for a few turns.

To an outside observer, Moe still doesn't talk. But if you look at the details, there are changes. He's starting to understand the picture exchange system a bit better. He seems to enjoy attending to the activities, and may even try to imitate, rather than just tune out. Moe's development - what we can see, anyway - may not happen in leaps and bounds, but it does seem to be happening, one step at a time.