School, Separation, and Loss

C waits for the school bus.

It's not been easy for me to accept that the twins are going to separate schools now. C seems fine with it, while M pleads with us to let him go to C's school. I guess it represents for me an undeniable divergence in their life paths. While I've come to accept that this is what's best, it still pains me.

Upon reflection I realized why: I lost my younger brother when I was just a little older than my boys are now. Despite my young age at the time, I've always felt the void left by his death.

I've had dreams where he's reappeared, sometimes as a grown man, others how I remember him last. His absence has been a fundamental part of my life's reality. Call it survivor's guilt or whatever you like, I know what it's like to lose a sibling (two, actually), so I have to remind myself that this isn't the same thing. My boys aren't losing one another. They're just spending a few hours a day apart.

Maybe the absence will bring them closer. Whatever the case, this is what has to be for now.

Summer's Last Days

We're spending this long Labor Day weekend as we do most weekends: going to playgrounds and parks, running errands together, and visiting friends.

In just a few days the twins will begin attending different schools; it's hard to imagine the boys apart, since they've been together since birth. Nonetheless, we know this is what's best, and we even wonder if the time apart might bring them closer still.

Above: C hams it up in ladies' glasses at Target

In other news, C did two things today that blew me away. Tonight in the bath, as M protested my brushing his teeth, C said, "M doesn't want you to brush his teeth!" It was the first time I'd ever heard him reflect on the feelings or wants of his twin so directly, and it took me by surprise.

The other event involved identical train conductor hats we bought for the boys at Target yesterday. This morning C suddenly bolted upstairs saying he needed to get one of the hats; we had no idea why, since he was already wearing one. When he found it, he ran back downstairs and handed to to M, saying, "You wear it, M!" Again, I've never seen this kind of reciprocity from C toward his brother, so I was thrilled.

The day ended on a slightly less stellar note: C's evening stims have gotten pretty severe. He is completely unable to settle himself, and spins around and around in his bed, thrashing and screaming at the top of his lungs (what must our neighbors think?). His screaming and thrashing is actually starting to frighten M, so we have taken to letting M fall asleep in our bed until C settles down.

We're doing research on ways we can minimize the evening stims, but we know this is a phase and we're just going through a rough patch. Of course with autism, every bump in the road makes you wonder if things are just going to get worse from here, but time has shown us that, overall, C is making progress. We just have to continue working on the problem areas and supporting the good stuff.

A Watchful Eye

C has bad reactions to anesthesia, so the day after his most recent pulmonary function test we ended up in the ER. Everything turned out fine, and we got to witness a special moment when M kept a watchful eye over his twin.

Everyone assures me that, despite outward appearances, our boys have a deep connection. I'm beginning to see the truth in their conviction.

A Subtle Affirmation

I didn't notice it when I took the photo, but I saw it later: C is holding M's hand.

To me, this little gesture says so much, maybe more so because of its subtlety. It's easy to think C isn't quite there, that he's not present, that he doesn't need the rest of us. But he does, and it's these little signs, these seemingly minuscule gestures, that prove it. You don't hold someone's hand unless you want to connect with them, unless you need and want them in your world.

This is an affirmation of C's desire to connect, and I'm grateful for it.

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.