C in front of a stucco wall

Sometimes extreme sensory-seeking is a hassle. It means crashing into things, knocking things over, chewing everything in sight — even Dad’s favorite chair.

C touching stucco

But sometimes-sensory seeking means bear hugs, tightly held hands, and experiencing the pure joy of a stucco wall.

The right kind of help

An anecdote I read in NeuroTribes this morning resonated with me: a family recounts how their DAN! doctor had little interest in meeting their son, but rather on recommending (and selling) more and more biomedical therapies. This mirrored our own experiences early on with DAN! and similar practitioners: the focus was always on the labs, tests, treatments and “remedies,” never on who C is as a boy.

The doctor who spent the absolute least amount of time with C — barely a minute — was the DAN! doctor who recommended a heavy protocol for C, and who also admonished us for even saying he had autism. (“Don’t use that word. It won’t apply to him in a year or two,” she said.) Even our first pediatrician who told us C was “probably just shy” at 18 months spent a lot more time each visit getting to know him. And his fee was $110 for a visit, not $500 like the DAN! doctor (not covered by insurance). To be clear, the same thing can happen with any doctor/practitioner eager to prescribe medication and move on to the next patient.

From that point forward, we decided any specialist we saw would deal more with our son and who he is as an individual rather than pushing expensive tests and various “treatments” and “cures.” Some suggested that was giving up on C. We don’t see it that way. We felt it was getting to know him.

Hugs, camps, books

Things have been hectic, thus fewer posts. I have been a bit more active over on Facebook; won’t you join me there?

In the meantime, just a couple quick notes.

C shows his brother some serious affection

We’ve been working with C to help him show his emotions in appropriate ways, in particular affection. It looks like it’s working.

I took this photo just before a very tough morning. You see, it’s summer break for the twins. This means some much-needed downtime for C, and day camps for M. As we dropped M off at his camp, C fell apart. He saw the kids doing a morning routine, playing, laughing. He was devastated that he couldn’t stay with his brother, that he couldn’t be part of the summer camp experience. Obviously, this isn’t easy on us, either.

On the drive home, my wife and I chatted with him about how this wasn’t possible just now, but hopefully soon. We try to be honest with him, but still protect his feelings. He gets it, even though he doesn’t like it.

In other news, I just started reading the just-released and already critically-acclaimed NeurTribes by Steven Silberman. It’s not just incredibly informative, it’s a great read. I highly recommend it, but don’t take my word for it:

NeuroTribes is a sweeping and penetrating history, presented with a rare sympathy and sensitivity. It is fascinating reading; it will change how you think of autism, and it belongs, alongside the works of Temple Grandin and Clara Claiborne Park, on the bookshelf of anyone interested in autism and the workings of the human brain.”

— Oliver Sacks, author of An Anthropologist On Mars and Awakenings

In March, Silberman gave a great TED Talk on the forgotten history of autism. Check it out if you haven’t already.

That’s it for now. More soon…hopefully.