'Good days. Bad days.'

A father’s journey with Autism

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Once we found a way for him to express himself, it was like an all-out sprint to see what else we could teach him. At last we could reach him and more importantly, he could reach back.

It really was a miracle. I got to know my son. We bonded. We learned from each other. He learned new words and pictures daily and we learned what his needs were — a keystone moment for our family.

Most importantly, I began to accept my son for who he is and not what he has. In many ways, though not what I’d imagined, I am enjoying a resurgence of boyhood through my son. There’s long afternoons playing at the beach, video games, days at the zoo or just hanging out at the kitchen table, laughing. It’s all good.

Dean is now 9 years old and will be 10 in December. I’m lucky to have such a wonderful, happy boy. He’s far from being a brat. He has none of that sneakiness or selfishness that some kids tend to get. He’s incapable of lying. He has a great sense of humor and laughs without reservation. He’s also a pretty talented little artist. And all he ever wants is to be included in whatever is going on.

There are still challenges every day, though. And not just my own but for the thousands, maybe hundreds of thousands of parents who are living with autism.

I read an article recently about a 13-year-old boy with autism who, along with his family, had been banned from their Church in Minnesota. According to church leaders, the child was dangerous and disruptive. The church acquired a restraining order to legally ban the family and their son from Sunday mass. The restraining order cites the child’s noisy outbursts, incontinence, spitting and running from his seat, nearly knocking congregants over. The boy was already over 6 feet tall and more than 250 pounds.

Was the church right? I don’t know. Was it the Christian thing to do? I don’t know. Does the child have other behavior problems besides his disorder? I don’t know. What I do know is that when you are raising a child with autism there’s really no game plan. If there is, be ready to throw it out the window. Every situation is fraught with potential disaster. Even church isn’t a guarantee of safety and compassion. It’s a very lonely, scary feeling.

I recently shared this sense of isolation with another San Diego parent, who has a 10-year-old son with autism. Though her son could be considered high-functioning, she remains guarded when asked about what hopes she and her husband have for their son. “We would like to see him have a job in the community. He doesn’t have to be a doctor or lawyer. But more than that, we just want him to be safe and happy.” She also expressed a desire for her son to marry but quickly added, “I just don't know about that …”

I also have to admit that the thought of my son having a career or marrying is so far beyond what I’m capable of imagining. Dreaming? Yes. Wishing? Yes. But actually imagining some kind of independent life for Dean? The thought is just too big. And, you know what? I’m OK with that. I’m enjoying my boy. Who’s got time to think about careers and marriage?

We even figured out a good system to enjoy Disneyland as a family. The trick was to get a hotel room and break up the drive time and the fun time. We also learned that Disneyland offered a “special needs” pass for our family. Waiting in the long lines was very chaotic and upsetting for Dean. There were potty accidents and meltdowns before we could even get on the rides. With the pass we are able to manage our son’s moods and help him enjoy his favorite day of the year: Disney day.

Raising children is hard work. But with “normal” kids, you see the results daily. You see a child walking, talking and behaving in a carefree, “normal” way.

But raising a child with autism can often feel like an exercise in futility. There are definitely going to be bad days. There’s going to be frustration. But isn’t it like that with everything? Aren’t hard work and diligence the keys to almost everything?

Doesn’t everyone go through rough times throughout his or her life? You naturally find a way to get it through it for you and your family. And then something happens that makes everything worth it all, a spark of magic that only parents can really understand. A smile. A hug. A laugh. You just know that everything’s going to be fine — at least for one day.

There’ve been lots of great, wonderful days and a few life-changing bad days. But it’s all the same “lifelong journey,” as one mother put it. We do the best we can with what we’ve got. We “build on our child’s strengths,” as Dang says. We find other dreams to fulfill with our children.

So my son can’t throw a tight spiral yet. He’s a great boy and he makes me laugh. I love him, autism and all. And if it becomes too much or the day takes a turn, we take a step back and recite the autistic parents’ mantra, “Good days. Bad days.”

Maybe we’re normal after all …

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