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?

Falling for Frosty

As we were leaving the school where C’s sensory gym is, he spied two cardboard Frosty the Snowman standees, each over six feet in height. He made an immediate hard left turn, cutting me off, and marched directly toward them. He pointed at one and said, "This one is Frosty." He pointed at the other: "This one is Snowman."

This seemed to please him greatly, so he continued: "Frosty!" Turns: "Snowman!" Turns: "Frosty!" Turns: "Snowman!"

With each turn he became more animated, until finally his pointy little finger pushed "Snowman" so hard it began to fall over. I lunged to grab the standee. As I did so, C spun and pointed his finger directly at the chest of Frosty, pushed hard, and yelped, "FROSTY!!!"

As Frosty started his own descent toward the ground, I let go of Snowman and lunged toward Frosty and, in doing so, managed to cross one leg in front of the other. At this point, my legs were completely intertwined.

And so, as Frosty hit the ground, I hit the ground, too...hard as a sack of potatoes. I didn’t even have time to get my hands in front of me. WHAP! Right onto the unforgiving elementary school linoleum.

A moment passed, and then came Snowman. Apparently I'd not stabilized him sufficiently before letting go. There I was, lying on the ground, two large cardboard snowmen on top of me.

A security guy and a custodian who saw the incident ran over to see if I was okay. I leapt up, embarrassed, and blurted something about being totally sober, which probably had the opposite effect. They chuckled and walked away.

In their wake stood C, regarding me with what can only be described as a slightly quizzical yet mostly disinterested gaze. He leaned over, pointed, and said one last time: "Frosty. Snowman. And Daddy."

TED Talk: "How autism freed me to be myself"

This is one of those great talks that transcends autism, and yet is so relevant to the conversation about autism. Rosie King has autism. Her brother and sister have autism. What she's asking is that we re-think what autism is and, more importantly, why "normal" is so important to so many of us.

"But if you think about it, what is normal? What does it mean? Imagine if that was the best compliment you ever received. 'Wow, you are really normal.'"

(Laughter)

Instead, she says, the "compliments are, 'you are extraordinary' or 'you step outside the box.' ... So if people want to be these things, why are so many people striving to be normal?"

I'm reminded of the excellent talks by Faith Jegede and Andrew Solomon.

Regardless of your connection to autism, this TED Talk is a clarion call to celebrate uniqueness. It's six minutes of awesome. Watch and share, please.

A talk that changed my perspective

The period after C's autism diagnosis was troublesome: I experienced emotions ranging from grief to confusion, anger to denial. Most of all, I felt an overwhelming sense of loss. A few months later, though, I came across Faith Jegede's TED talk, "What I've learned from my autistic brothers."

After watching this brief video, I hit replay two more times — something I rarely do (who has time?). Something in her words kept tugging at me.

And there it was, this idea, so simply stated: "Everyone's got a gift inside of us, and in all honesty, the pursuit of normality is the ultimate sacrifice of potential. The chance for greatness, for progress and for change dies the moment we try to be like someone else."

I've watched this talk many times since, and when things are especially difficult, I reflect on this passage in particular: "...beyond the tantrums and the frustration and the never-ending hyperactivity was something really unique: a pure and innocent nature, a boy who saw the world without prejudice, a human who had never lied. Extraordinary."

Extraordinary indeed.

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.