Why does my child have autism, and yours doesn't? Genetics could play a part. We spun the wheel of chance and received a bundle of joy that came up beautiful, intelligent, and autistic. You spun the wheel and hit a different combination. Environmental factors play their role too, but my son's physical and emotional environment wasn't so different from that of your child. What made mine autistic and yours not? As of right now, no one knows.
When my husband and I decided to have a baby, we didn't know we were making a decision that would radically change our lives forever. While every baby changes the lives of his parents, having a child with special needs launches you onto another planet, with no way back to your old world. Ever. For some parents, this can mean changing diapers well into their 80s. It may mean living the rest of their lives with someone who is angry, anxious, violent, or depressed. It does mean entering a world of isolation, where few of your friends and family understand your child and why you do what you do. It may mean giving up your career and your education, because you can't find anyone else who can care for your child. It can mean designating an unexpectedly large portion of your income to therapies, tutoring, doctor visits, and medicines, because they don't come cheap. Your other children will get less attention and time, and so will your marriage.
We didn't decide to have a child with autism, and we did nothing to cause it. You could have had him as easily as I did. But, the thought of that makes me sad. My life back on “planet normalcy” was a good life, and it was far easier than the one I have now. Yet, when I watch my sweet little whirlwind running in the sunshine, flapping his arms and giggling at some joke only he understands, I feel more blessed than I could have ever imagined. You could have had my son, but you didn't. He is mine, and I'm keeping him—probably for the rest of my life.
We may become parents on the day our first child is born, but our parenting skills take longer to develop. They start as a bunch of ideas we've gathered from our environment: our parents, our relatives, our friends, and the media. We might have picked over those ideas and discarded outdated or harmful ones or those we're certain are for folks not as enlightened as ourselves, but for the most part we didn't invent these ideas. We absorbed them.
When we got pregnant, our ideas about child-rearing began turning into plans. We came to conclusions and etched those plans into stone. We became sure that we knew the proper way to raise children, and we decided to do so accordingly. We would never spank. Our children would watch only 1 hour of television a day. Our marriage would always be a priority. Bribing and manipulating children is bad, so instead, we would help them develop their ability to reason and make good choices.
Then our children are born, and we try to put our plans into action. This is where things get really exciting. We discover that keeping a toddler clean is like having to tidy up the Augean stables. Hercules could do it, but he had help from the gods. We find that breakables left where children can reach them tend to get broken, even though we decided long ago that children need to be respectful of other people's belongings. Our cars begin to smell like old French fries and sour milk, and the dog now lives under the table, where the kids can't reach him. We come to the conclusion that we're lousy parents. In desperation, we turn to the highest authority we have available to us. We call Mom.
Mom laughs. She's been waiting for this phone call for years. She laughs a lot. She makes you hang on for a moment so she can repeat what you said to Dad. He laughs, too. Then Mom tells you how darling your children are and that they must be advanced, because they learned how to write four-letter words on your wall in ketchup far sooner than your cousin's children did. Then you get to listen to several stories about what a rotten little brat you were—stories that your aunts can corroborate because the tales about what you did have become family legend.
Finally, Mom settles down to business. She sets you straight. She tells you everything she's learned about raising children, and, if she's really nice, she does it without reminding you of your sanctimonious preaching of just a few short months ago. She tells you about natural consequences, like when a kid eats the cat's dinner, he shouldn't get dessert, and he must fill the dish back up so the cat won't starve. She tells you that leashes for kids are good safety tools, especially for teenagers. She also reassures you that 20 minutes of playing in toilet water won't kill your toddler, although the things he flushed away are gone for good.
Mom saves the day, or at least part of it. I mean, she's your mother—are you going to believe everything she says? So you ask your friends who have kids, and you ask your pediatrician, and you read some magazines to find tried-and-true parenting solutions. Slowly but surely, you build up your toolbox of tricks, and everything pretty much works out okay.
That is the ancient and time-honored way of learning parenting skills. But, sometimes it doesn't work.
If you have a child with special needs, you're pretty much on your own. Unless your mother raised a child with autism, she probably doesn't know what to do for a child who refuses to be held and cries every time you touch him. Or how to teach a nonverbal 5-year-old how to speak. Or how to get a 7-year-old to quit pulling chunks of hair out of his head so he can throw them into the air and watch them fall. Chances are, your mother's advice is going to be useless at best, if not downright disastrous.
And your friends? Unless they've got a child with special needs, they won't even understand your questions. “What do you mean, your child doesn't know how to make friends?” Parenting books and magazines are useless, too. They only tell you that your child is probably just fine, and if you're really worried, you should talk to his doctor. They don't tell you what to do if something's actually wrong. They gloss over that and move on to how to throw the perfect birthday party. Your pediatrician is great for diagnosing and prescribing medicine to treat some of the symptoms of autism but is typically not much help for behavioral problems, like when your child acts like a dog on the playground, complete with sniffing the backsides of other children.
Where do parents go next? To the Internet? It's a wonderful tool, capable of generating a vast amount of information. It does so in seconds and dumps out a great big pile. There's gold in that pile—you just have to be able to sort it from the hooey. Unfortunately, if you knew how to recognize the good from the bad in the first place, you probably wouldn't have had to search the Internet at all. Support groups are wonderful and nurturing, as long as the members are actively seeking answers instead of just sitting around complaining. Specialists and therapists who know about your child's disabilities are fantastic, if you can find them in your area and can pay their fees.
It's not easy being the parent of a child with special needs. Trying to use the parenting skills most of us arrive with is like trying to fix a computer with a buzz saw and a spatula. They're great tools—they're just not the ones we need.
Please understand that we've tried all the skills we have to help our children and ourselves. We're doing the best we can with what we know how to do. It's not enough. We need to find someone who knows about the challenges our kids face and can teach us something new. We need more than the typical set of parenting skills, and we need them now.
Most pediatricians are not trained to treat children with autism. Some know how to recognize autism and will provide a diagnosis, but few of them do more than tell parents that the school will take care of