On Asperger Syndrome and Broken Hearts
Our son, Mattias, is eight years old. Everyone thinks their kid is special, and in a lot of ways, he’s just a regular kid. He loves fart jokes, enjoys riding his scooter and is obsessed with video games. But we’ve known he was different from a very early age.
Mattias started reading almost as soon as he began to talk. By age four, he could name any musical pitch or chord structure by name that he heard. He memorized his books after only hearing them a couple of times
He also struggled to make friends, still has frequent bathroom accidents four years later, and he has meltdowns when things don’t go his way that would rival Bobby Knight’s chair-throwing basketball tirades.
But now, he’s finally starting to realize he’s different.
A couple of nights ago, he got particularly frustrated about the order in which we tried to get him to do something. I don’t even remember what it was about, though I’m sure he could tell you in excruciating detail. He quickly found the end of his fuse, turned bright red and started hitting himself aggressively in the side of the head.
“Why am I so different?” he wailed, continuing to whack himself. “Why am I not like everybody else?”
After we got him calmed down, my wife, Amy, had “the talk” we had anticipated was coming for some time. No, not the one about sex; he seems to be pretty matter-of-fact about all of that. This was the “different talk.”
“You know how there are some things you can do that none of your friends can do?”
“And you know how you sometimes have a hard time making friends?”
“But mom,” he grumbled, “it’s because when I try do tell them how to do something right…”
“I know honey,” she patted him gently on the back. “You have something called Asperger Syndrome. It makes you a little bit different, but it also helps you do some really amazing things that even dad and I can’t do.”
She made a point of offering the news in a way that had as many upsides as downsides, but of course there’s no telling how a kid like Mattias will take this kind of revelation. We braced for another meltdown, but thankfully it never came. In fact, he was pretty excited about it.
“Right on,” he smiled, “I have a syndrome!” he looked curiously at Amy. “Mom, what’s a syndrome?” And thus the new obsession was born. He spent the next few hours drilling us on all things Asperger’s, and endeavored to read whatever he could pull up on Google about his newfound difference.
In all, it went as well as could have possibly been expected. But that doesn’t mean the day-to-day of raising a kid with Asperger Syndrome is any easier. Sometimes it’s easy to fall into a well of self-pity, bemoaning the fact that he requires extra therapy, counseling and parental vigilance that some other kids don’t need. I mean, we didn’t do anything to deserve this, right?
We got a call from Dave and Lyndsay, whose family belongs to our church, after their Sonogram for their expected third baby. With emotion spilling through the phone, they explained that little Avery was developing with only half of a functioning heart. The entire left ventricle wasn’t moving at all, and they had already passed the window for possible in-utero heart surgery.
They had three options: abort the baby, let him be born and take him home to let him die naturally, or accept the fact that he’d have at least three open-heart surgeries in the first years of his life, followed by a full transplant as he grew. And aside from all of that, there was no guarantee what limitations he would be able to overcome, or even how long he would live.
Instead of withdrawing into themselves, drowning in the darkness that I can only imagine they felt surrounding them, they decided to share their story. On Sunday mornings at Milagro (our church) someone always stands up and offers a show-and-tell moment, where they offer an item that helps them see God. Dave and Lyndsay brought an image of little Avery in the womb. Though no larger than the size of a man’s clenched fist, it seemed as clear as the days of the week that his hand was folded in the shape of the sign-language phrase, “I Love You.”
“Instead of asking ourselves, ‘What did we do to deserve this?’” said Dave, “we decided to ask ourselves what exactly we were going to do to deserve this special little life that is going to soon become a part of our family.”
Man, did I feel like an asshole. Though the struggle of others hardly makes me feel any better, it certainly serves to put my own hardships into perspective. Tears were shared by many, as were prayers, hugs and stories offered by other parents about losing children, grandchildren, having a baby born with special needs, and even a few stories of inexplicable, miraculous hope.
Now we all bear a little bit of the weight they were carrying. It doesn’t change anything about Avery’s condition, but together, I do believe we are stronger. And in so much as our strength helps Dave and Lyndsay face their own challenges, maybe it could even change the course of Avery’s entire life.
That is church at its best.
Mattias will be all right. Yes, he can be infuriating to parent sometimes, but he’s inexhaustibly healthy, thank God. He crawled up on my lap a couple of evenings ago, and as he watched TV, I pressed my ear against his chest. With every heartbeat, I offered a silent word of thanks.
Christian Piatt is the creator and editor of BANNED QUESTIONS ABOUT THE BIBLE and BANNED QUESTIONS ABOUT JESUS. He co-created and co-edits the “WTF: Where’s the Faith?” young adult series with Chalice Press, and he has a memoir on faith, family and parenting being published in early 2012 called PREGMANCY: A Dad, a Little Dude and a Due Date.