We Want to Tell You

We want to tell you about all of C's achievements.

We want to tell you how well he's doing. We want to tell you that he's reading well beyond his years, and that he's developed a deep affection for his twin, frequently hugging him and saying, "I love you, brother."

We want to tell you that he says, "It's 7:70!" when it's ten minutes past eight! We want to tell you that he sat still and ate a cupcake, and that he finally peed in the potty. We want to tell you all of these good things and none of the bad things.

But when we do, you say, "See! He's going to be fine." You tell us, "He's probably going to be a rich scientist!" You implore us "not to worry so much!" You say, "I told you so!"

And in doing so, you discount all the things that we're still struggling with. You ignore all the challenges. You diminish all the effort we've expended just trying to overcome these minor obstacles. And you're ignoring the fact that none of these accomplishments erases his autism.

Most of all, you're not really talking about our son anymore. You're projecting your own desires, your own insecurities, your own wish for everything to be okay after all.

And you're probably doing it because you think it's what we want to hear, because you think it's supportive. In fact, it's not.

Here's the deal: C is always going to have autism, and we're okay with that now. It will shape everything about his life, and everything about our lives, forever. It's not going away, and neither are we.

Our acceptance of C's autism, and all the good and bad that come with it, doesn't make us pessimists — it makes us realists. Further, accepting C's autism was the first step in getting him the help he needs. If we downplay the challenges he faces, then we won't fight and work as hard to help him overcome them.

Somewhat ironically, denial would have been the easier path for us, but it's not the path we chose. So as we go on this journey, we ask you to come along with us. We're not asking for sympathy or pity. We don't want you to stop being optimistic.

We're just asking for you to accept things as they are.

Judged

Some of the looks we get:

• "Why is your child still in diapers?"
• "Why is your child screaming and writhing and not listening to you at all?"
• "Why is your child talking nonsense and making weird sounds so loudly?"
• "Why isn't your child acknowledging my child?"
• "Why won't your child respond to me?"
• "Why is your child lying in the middle of the floor?"
• "Why is your child making that high-pitched screech?"
• "What is wrong with your child?"

There we are, in the middle of a crowded cafe. Should've known better; C often has a hard time in group situations unless there is a quiet corner or other safe spot to which he can retreat. Still, we've been housebound for days because of Hurricane Sandy, and it seemed like a good idea to try to get out for a bit.

Wrong. It wasn't pretty. So, we pack it in before we even get our food or coffee, and carry a still-screaming (and hitting / kicking) preschooler back home. Once home, however, there's our little guy again. Bright-eyed, all smiles, humming his favorite song…peaceful and happy in our quiet apartment. And there we are, bedraggled and a little heartbroken…and feeling very judged.

I don't fault people for their stares. They don't know what's going on. They don't know why our son has suddenly and inexplicably gone off the rails, why his tantrums are so…weird, or why we look like we're on the verge of a nervous breakdown. They don't know that this isn't a normal toddler meltdown because it carries the emotional freight of fear and anxiety that Every Day Will Be Like This Forever.

In short, they don't know it's autism.

I imagine that once we've gone, they go back to their pleasant parental chatter while their little ones return to their joyful play. Maybe they think we're terrible parents. Maybe they know something is different and think, "I'm glad that's not me." Or maybe they don't really care.

All I know is that in the moment, when we're struggling to regain some semblance of normalcy, their looks bear down on us. I want to ask them to look away, to give us our moment, to leave us alone.

That's completely unreasonable, I know. It's not their fault; they're not doing anything wrong.

But neither is my son.

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Laughing When Possible

It's a good thing this boy can make me laugh because, if I'm honest, I've been a little down lately. All will be okay, I know this, but in the meantime I'm quite grateful for C's silly sense of humor.

What I Know About Fatherhood Now That I Have A Son On The Autism Spectrum

This post was originally published on Huffington Post for Father's Day.

When I learned we were going to have twins, I knew my journey as a father would be a little different. As if to prove the point, our boys arrived ten weeks early and spent over two months in NICU. While there, M developed a protein allergy that caused a life-threatening perforation in his intestines. Two weeks after C came home, all his systems shut down and I had to revive him with CPR. And there we were, in our apartment, two frightened parents with two tiny babies attached to heart monitors.

Yet this was just the beginning of our medical odyssey: C developed a very rare pediatric lung disease, and has spent the majority of his life with an oxygen tube slithering down the back of his shirt and trailing behind him. Then, when he was two years old, he was diagnosed with autism.

This last bit — autism — has proven to be the most challenging experience of all. It has also proven to be the most rewarding and the most enlightening.

Here are some of the things I've learned about fatherhood now that I have a boy with autism:

Worrying what other people think is a waste of time.

Before becoming a father I worried too much about the opinions of others. Then I went out in public wearing a backpack carrying an oxygen tank attached to my son's nose via a long plastic tube. Add to this picture standard toddler tantrums and autism-fueled verbal outbursts, and suddenly I began to think of myself and my family as a veritable freak show. That feeling lasted a short time, until it dawned on me that this is my life, this is my family, and I'm damn proud of us all. No one has to walk in my shoes, nor I in theirs, so worrying what they think of me — of us — is pointless.

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My child is more than a diagnosis.

If I told you my son had cancer, you would think of him as a boy with an illness. When it comes to developmental issues, however, there is a tendency to define the child by the condition. So while it's true that C has autism, it's not the entirety of his being: there is the boy who loves to clomp around in my shoes and laugh at his feet; there is the boy who loves to give nose kisses and hug the cats and tell us that his favorite letter is Z; and there is the three-year-old who asks us how to spell the words "elephant" and "yellow," and sees the letters "CUXW" on an electrical box and proclaims, "Sounds likes saxaphone!" These things define C just as much, if not more, than his autism.

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Reality rarely matches expectations, and that's a good thing.

Like many people, I painted pretty mental pictures for myself of what I thought parenthood would be like, and those pictures didn't include pediatric lung disease, autism, oppressive medical bills, insurance hassles, battles with schools, and so on. I understood parenthood wouldn't be easy, but like most people I assumed my family and I would be spared the really bad stuff. But here's where I got lucky: all of the tough stuff happened so quickly and so early there wasn't time to worry that my pretty mental picture didn't match my unfolding reality. My wife and I went into search and rescue mode almost immediately, and have remained there ever since. Of course there are moments of desperation and rage and envy, but the truth is that our crazy life has taught me to find joy and wonder and meaning in places where the old me — the me before becoming a dad — might only have found sadness and despair. Most of all, I've come to be very grateful for my life, warts and all.

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Little accomplishments mean just as much as big ones.

Just before C received his official autism diagnosis, I confided in a good friend — who also has children on the spectrum — that I was having a hard time witnessing M excel while C fell behind. I told him I was constantly comparing my boys, and then feeling guilty for making the comparison. With great confidence, he assured me that in time C’s achievements would seem just as significant as M’s more advanced ones. I've learned that my friend was right. Any parent of siblings knows it's unwise to compare them, but when one child has a developmental disability (and, in our case, is a twin), those comparisons are a doubly unfair and unhappy proposition. But now comes the twist: with a lot of therapy, time, and normal childhood development, C is now ahead of his age — and his twin — in some key areas like reading and counting.

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I have a purpose.

The first time I felt like a father happened before the boys were even born: I was installing car seats, and doing so slowly, methodically, while carefully reading the instructions (not my usual m.o.). The entire time I was thinking how important it was that I get this right, that I make sure my boys are safe when they're in the car. From that point forward, the responsibility of being a dad — of caring for and protecting my boys — has colored almost every aspect of my life. With C’s health and developmental issues, that sense of purpose has been amplified. And while I have high hopes for C, reason dictates that I should prepare for the possibility that he will be dependent on me for as long as I am alive. Instead of seeming overwhelming, this immense responsibility fills me with a sense of priority and purpose I never dreamed possible.

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It's okay to need support.

I have always prided myself on my ability to go it alone, but this journey — which at times seems very isolating — has taught me just how much I truly, deeply need the help and support of others. It has been quite humbling. That's why one of the most surprising aspects of this experience has been the reaction, and lack thereof, of close friends. People I believed would be there for us have faded into the background for reasons I can't quite ascertain. Perhaps our situation makes them uncomfortable; perhaps they're fearful we might need too much; or perhaps they are simply busy with their own hectic lives. Whatever the case, the sting remains. Equally surprising, however, has been the reaction of other friends — some old, some new — who have come forward to offer their support in remarkable and wondrous ways. Their acceptance of us in general, and of C in particular, has been a salvation of sorts. Never a joiner, I've come to learn the value of community and the importance of asking for help.

Sight Reading

Yesterday we witnessed something amazing: C is able to sight-read some words, and then match them to images. (This is the first time C has done this exercise with his ABA therapist; ironically, the point of the exercise was to help him with fine motor skill such as holding paper, not reading.) These are words C likes to spell, so he's already familiar with them. Nonetheless, he's seeing the words out of context and attaching meaning to them. In other words, pre-reading.

I know that when I tell people about this, some of them will think, "Well, there's more proof he's smart and maybe just a little unusual." It can be frustrating having to constantly explain that, yes, my son has some abilities that are beyond his 3.25 years of age, but in other areas he has severe deficits. People tend to assume average to better-than-average cognitive abilities mean there are no serious problems.

Nonetheless, I am thrilled with this development: it is heartening to know that despite the deficits, he has a great brain hard at work.