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.

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.

Not picky, anxious

Last week, C ate things he's never eaten before. Strange, exotic things like pancakes, chicken, a croissant, some bread, and a few leafy greens. Maybe this doesn't seem like big news, but it is.

Prior to last week C ate approximately five things: nuts, crackers, yogurt, fruit, and protein bars. But he's not a picky eater. Scratching your head? It's true.

Enter anxiety

Anxiety is far more prevalent in people with autism, and C has a lot of it. Tons of it. It manifests itself as rigidity, a fear of the new or unexpected, phobias and perseverations about things he can't change like his age, gender or skin color. Yup, it's true.

When he was younger, he ate most things we offered him. (We had to keep him eating a lot because his lung disease meant he burned calories very quickly, and many kids with this condition end up with a feeding tube. C, fortunately, did not.)

As he's gotten older, his anxieties have become more pronounced, and food is no exception: if he sees something on his plate that doesn't belong, that breaks with expectation, he can have a full-blown, tear-strewn meltdown. Not an angry meltdown, but something closer to a severe existential crisis.

The $100 slice of pizza

When we go anywhere, we have to bring separate meals and snacks for C. At birthday parties, people ask, "Is he on a special diet?" I say, "Only by his own choosing, and if you can get him to eat a slice of pizza, I'll give you $100." And I mean it.

Telling others about this often results in The Picky Eater Lecture. E.g., "Oh, my son was a picky eater, and now he eats anything! Just be patient." Or, "We used rewards and it worked." Then there's, "Only feed him things he doesn't like and eventually he'll get so hungry he'll eat them." They chalk it up to some behavior issue, when in fact it's the result of deep-seated anxiety.

We've been working on this a long time, trying to break down the anxiety by introducing new foods slowly and without pressure or duress. It's a focus for us not just because his diet is a hassle, but because he needs to eat more than crunchy carbs.

So what changed?

Why is he suddenly willing to try a few new foods, albeit very hesitantly and sporadically, especially at a time when his anxieties are more pronounced than ever?

We have our theories, but one thing in particular stands out: his school has cooking sessions. They go shopping in a grocery store, purchase ingredients, follow recipes, and eat the food they make. C loves this process...up to the eating part! So we started cooking with him at home, too.

Whereas he's normally a ball of non-stop movement, he stands patiently (mostly) on a step-stool at the kitchen counter. He loves the measuring, the cutting, the process of it all (natch!).

I think this sense of control over the preparation of the food is making the final product less fear-inducing, more approachable, more comprehensible. It's no longer a foreign substance that mysteriously appears on his plate: it's something whose very creation he contributed to.

The real point here isn't about how C is eating more foods, but about how he's overcoming a limiting anxiety. We're not bribing, cajoling or forcing him to change; we're trying to help him take control of the fear and perhaps turn it into something positive.

Who knows, maybe at some birthday party in the not-too-distant future, he'll actually eat a slice of pizza. One can dream, right?

Father's Day wish

The thing I want most this Father's Day won't come from anyone but me: I'd like to be the dad I am on my best days (and in my better moments), not the one I am on my worst.

Whose journey is this?

I started writing this blog to give something back.

When C was first diagnosed with autism, I wanted to learn as much as I could. A big part of my research included reading ASD parent blogs, some of which were so helpful that, after a while, I felt I might like to share what I was learning, too.

Over time, however, I was reading fewer parent blogs and more blogs written by people with autism. As my son is still young, hearing from older people with autism was revelatory and inspiring.

And so lately I've been wondering, whose journey is this, anyway?

As someone who now follows autism closely — including the political, social, scientific, financial, and philosophical perspectives — I feel the focus is still mostly on us parents and what we go through, and not enough on the people who actually have autism.

Or, as Tommy Christopher recently put it, "Autism is not about you, Jenny McCarthy, Joe Scarborough, Autism Speaks, autism parents, and shitty reporters. It’s not about how hard your lives are, or what saints you are for not murdering them, or what bogus science you’re spreading. It is about the children with autism, and the adults that they become. If you love someone with autism, if you care at all about them, you need to fix yourselves. A good place to start would be to listen to them."

I'll continue to share my experiences as a parent, some of which are difficult. But as I write about this journey, I want to be careful to make it clear that this is not a tragedy, and we are not victims. Yes, the system is broken. Yes, there are challenges, just as there are challenges in any life. Yes, I have fears and frustrations.

But mostly I'm happy because my son is awesome, and on a daily basis I consider myself damn lucky to be his dad.

...

I started writing this blog to give something back.

I wanted to help parents just as I'd been helped by others. That hasn't changed. But what I've come to realize, and what I hope to share with others, is the perspective that what matters most isn't us parents, but our children...our children who will become teenagers and then adults.

This is their journey, and we're just along for the ride.

Respecting a Birthday Wish

This year, unlike years past, we asked our twins to help create a guest list for their birthday party. M, our neurotypical guy, had a ready list of friends and classmates. In fact, he had more than we could reasonably accommodate.

C’s list, however, was decidedly shorter: “No one.” C is rarely so declarative, so we tried again a few more times, only to get the same response: “No one.”

We would ask around the question. “Do you have friends you like?” “Yes.” “Like who?” Names were offered. “Don't you want to invite them to your party?” “I don't.”

We know that C likes other children, even though he has yet to find meaningful ways to interact with them. But we also know he’s been having a lot of anxiety in group situations lately, retreating ever more into himself as the group grows in size.

We decided to respect his wish; we felt it was important for him to feel he was heard and his request honored. His birthday, after all, is his special day, not ours.

So we had a birthday party for the twins, and we invited friends — M’s friends. C, for his part, had a great time doing what he likes to do: running, laughing, jumping, rolling around. No pressure to socialize, no need to be there for someone else.

I hope that one day C will find it easier — and more pleasurable — to have friends. Until then, he will know that his wishes and needs matter, at least to us.