"And you love him?"

File this under Stupid Things People Say

Yesterday my wife hosted a playdate with a couple of neighborhood kids and their nanny. It wasn't all fun and games: my wife felt the nanny's eyes on her as she changed C's diaper (yes, he still wears diapers), and when she was comforting him when he bit his lip (sometimes small things really set him off, while bigger things do not). 

The nanny also asked probing questions: does C ever play with other children? (Well, yes, his brother.) Does he speak much? (When he's comfortable, you can't stop him from talking!) Did we do genetic testing when we were pregnant? (Uh…)

But the best was this little gem: "And you love him? You really love him?"

My wife, nearly dumbstruck, answered simply, "Yes, I love him."

To which the nanny, reflective, replied, "I don't know if I could. I think I would just cry all the time."

Sigh.

This is the same nanny who often remarks how sweet C's twin brother is. It's true: M is happy, polite, and enthusiastic. He's genuinely appreciative of the littlest things. Maybe this is what happens when you love a brother whose magnificence seems small to others.

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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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Raw Nerves and Bad Reactions

If you tell me my son is a curse or revenge from God, I'm not likely to react well.

Tonight I wrote a nasty note to a politician who, a few years ago, made such a statement. He later apologized, saying he'd chosen his words poorly. He did, however, go on to say that medical studies support the contention that mothers who have sinned, in particular by having had an abortion, are more likely to have a child with disabilities. Ironically, this politician is, in other regards, an advocate for the disabled on both a professional and a personal level.

But I digress.

I'm not proud of the note I sent tonight. It was crude and angry and, upon reflection, belied my own lack of sound judgment. Yelling at people online rarely does any good at all, even when you're right, and I know this.

Except, this is my son, and he's not a curse from God or Nature or whatever. And if you say things like that, no matter how you qualify it, you had better expect that some people, especially those actually raising children with disabilities, may not take it well.

I feel bad about having written the note, and in particular for letting his words get the best of me. I'm raw and I'm tired and I need a break. But that's no excuse. It's just what it is.

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.

The Double Whammy

There are a few preschools near us that are a good fit for children with C's type of autism, but as soon as they find out that he's on oxygen, they tell us they don't think they can take him. Mind, you, these are schools for children with disabilities; these are schools that collect taxpayer money to help provide services.

Oh, they're all very nice: "We think C would be a great fit, and he would thrive here. Unfortunately, we're worried about his oxygen tube; it could be a tripping hazard for the other children." Read: "We don't want to get sued."

So we bring C to these schools so they can see how well he negotiates the tube; how other kids are actually quite aware of its presence and navigate it pretty well themselves; and we tell them we can get a nurse to shadow C to ensure the tube isn't a problem.

The response is always the same: "I'll discuss it with our board." The meaning is clear: your son's not getting into our school.

Some well-meaning friends have said this kind of news might be a good thing; after all, why would we want to send C to a school that doesn't think they can handle our son's issues? The problem is there are a very limited number of schools that deal with autism, so if none will take him, where does that leave us? Sure, we can hire an attorney to fight the system (it's pretty obviously a violation of the ADA and other regulations), but with what resources? And what if the schools fill all the available slots in the meantime?

And so we're faced, yet again, with the fallout from the double-whammy of lung disease and autism.

camelbak

On a positive note, I've learned that some kids on oxygen are learning to use small backpacks with mini air tanks in them, so they won't have a tube snaking around behind them. I've ordered just such a backpack, and hope to load it up with weights this weekend to see if C can manage it. We have to be careful to pad the top of the tank, because it is sharp and could pierce the back of his head. We also need to make sure the pack is adequately padded because if an oxygen tank's neck is snapped, it will go off like a rocket.

If this solution works, however, the next step will be to negotiate with our insurance company and medical supply company to see if they'll allow us to get these much smaller oxygen tanks. And so it goes.

Fingers crossed, as always.