There was something different about Chris from the day he was born. I have always been told that he’s an “old soul,” but he missed every infant milestone: rolling over, sitting up, babbling, talking, walking. Every one of them. But we didn’t get an actual diagnosis until he was almost six. And with that actual diagnosis, I had to come to grips with what that meant. And it was hard. So how do you, as a parent, accept an autism diagnosis, or any special needs diagnosis, and move on from there to continue to be what your child needs?
Well, you thrash around for a while. There’s sorrow and sadness. There’s shaking your fist at the sky. There’s hopelessness and thinking about spending your old age with an incapable adult child. There’s all of that, I won’t deny it. But you can’t stay there. And once you’ve dried your eyes, here’s what you can do.
- You realize that your beautiful child is still your beautiful child. Chris has brown hair, he’s tall for his age, he has freckles on his nose, and he has autism. All of these are facts. Plain and simple. He was the same kid the day before his diagnosis, and he was the same kid the day after. The only difference was that we had a medically recognized name for a part of what makes him Chris.
- You come to find out that a diagnosis isn’t fatal. It’s a tool to get your child the help that can make a difference as he or she grows up. We went through the diagnostic process because Chris’ school district had to have a reason to continue to support him in the classroom. “Autism” was a good reason. The diagnosis opened that door, and he needed the door open because he wouldn’t have been successful at school without help.
- You recognize that Autism is a gift sometimes. Chris has these deep, wise eyes that can see right through the nonsense of neurotypical blather to the insecurities we try to hide. He’s insightful. He’s kind. He’s compassionate. He has a great sense of humor and a tremendous amount of optimism. He wants to share what he knows with other people. That’s autism, too.
- You stay stubborn. Chris was diagnosed initially as Classic, High Functioning Autistic. If he were reassessed today, he would probably come out with Asperger’s Syndrome. What made the difference? Early intervention: physical therapy, occupational therapy, speech therapy, one-on-one tutoring. He learned to swim, ride his bike, read a book. And part of the reason all that happened was because his dad and I insisted it happen. Period. Never believe a person with autism can’t do something just because they have autism. Keep believing in your child because your child believes in you and needs to believe in himself or herself.
- You decide that an autism diagnosis isn’t The End. Yes, you’ll have a lot work to do, but there has never been a better time for an autism diagnosis, to be honest. More and more people are learning about it, and more and more kids are growing up with autistic peers, so they learn that it isn’t a big deal. No longer are individuals with autism committed to mental wards for life or otherwise cloistered from society. No longer does society blame the “refrigerator mom” for causing a child to become autistic. We’ve come a long way, and we’re still going. It’s a continuing journey, and the more we know, the smoother the path becomes for the people who follow after.
- You develop a network. These are other parents, teachers, doctors, dentists, tutors, friends, grandparents, providers, grocery store clerks, barbers…all of the people you come in contact with who can help make some part of your day easier. Barbers, you say? Yes. If you’ve ever tried to trim the hair of a child with sensory issues, you know what a difference it makes to find somebody with a calm and encouraging manner who can get that kid to sit still under a pair of scissors for ten minutes… Your network consists of people who can provide anything from an idea to a night out to a sanity check to a surprise cup of coffee on a hairy Wednesday morning. These people will save your sanity and your perspective. And speaking of that,
- You give yourself a break. I have never met a harder-working peer group than the parents of children with autism. We are amazing and relentless researchers, experimenters, testers, analysts, ring masters, bodyguards. And after a while, we burn out and tip over if we don’t take a break. Find respite care, a drop-in nursery that can take a child with autism, a Lego club that will give you the chance to finish a hot meal while the kiddo builds something incredible…
- Celebrate the victories. Go ahead and reward yourself for a successful experience, even if it’s a tied shoe or dishes that make it to the dishwasher without nagging. You don’t have to go overboard, but do focus on the positive.
In a nutshell, keep in mind that the diagnosis itself is just a tool to help you get your child what he or she needs to be the most successful person possible. Stay sane, keep every day in perspective, and cultivate friendships that will allow you to lose your mind once in a while. And then, go raise your beautiful child.