On Asperger Syndrome and Broken Hearts

On Asperger Syndrome and Broken Hearts January 31, 2012

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?”

“I guess.”

“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.

"goodness, some pple shld just learn not to speak at all"

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  • Heathermaggs

    Wow…thank you!  I needed that today!  Love and hugs…H

    • Christian, thank you so  much for sharing this article. I truly admire the love you have for your child and friends. I too have a daughter with aspergers syndrome and I can’t help thinking what the future has in store.  As she gets older, I am constantly questioning how she will adjust in new social settings and will she be provided with the attention she needs? I know I sound so worried, but after doing some research, I am learning from http://onlineceucredit.com/edu/social-work-ceus-ep  the right questions I should be asking to ensure a better future for my daughter.

  • Margot

    THese kiddos bring such important gifts to the kingdom.  Thanks for sharing this, C.

  • Lela

    I have a 13 yo Aspie, and he’s the best. It really does get a little easier as they get older.  We have had numerous “Asperger’s is actually a gift” talks and I am sure we will have many more.  Thanks for your post.

  • Beautiful and thoughtful—both your reflections on your own child and the story of the family with the baby-to-be. And as for your feeling badly about bemoaning your own fate in the face of theirs: While it can be helpful to get a reality check by realizing that others have a harder road, I think mostly it’s important to realize that having children breaks parents’ hearts in many ways. While the broken bits of our hearts may take on different shapes depending on what our particular burden is to bear, it’s better to use that common brokenness to connect with other families and parents rather than figuring out where everyone belongs on the scale of suffering.

    I have a genetic bone disorder, and one of my kids inherited it. We have a relatively mild form. Between the two of us, we’ve had four dozen broken bones. Believe it or not, that’s not many compared with folks with the severe form. There’s also a fatal form; babies die within hours, days, or occasionally months of birth. When we were going through hard decisions about whether to have a second baby who might also inherit the disorder, and exploring whether to use reproductive technology to screen embryos (decisions that are at the heart of my new book on a Christian perspective on repro tech), at first I was beating myself up. Here I was ready to spend thousands and undergo a serious medical procedure that raised many ethical concerns, all to avoid a non-fatal disorder that wasn’t even as bad as it could be! But ultimately, I had to let go of that kind of comparison. I think that we–as a culture and as Christians–often do a terrible job of dealing with pain and suffering, our own and others’. Part of dealing with it in a healthy way is naming it for what it is, and not feeling guilty because our burdens are less heavy than others’ burdens. A friend of mind often says, “Your pain is your pain.”

    Well, didn’t mean to go on quite so long. So will just say thanks again.

  • Nancy Brink

    Chapman University has a Nobel Economist on our faculty, Dr. Vernon Smith. When he came to Chapman, he and his wife joined First Christian Orange and he was baptized. And yes, Asbergers. One day at a time!