When I told “the world” (aka Facebook) that my son had finally been diagnosed with autism, one of the first things that happened was that a friend I’ve known online for many years asked “Are you blogging about it?” It’s a natural question. I’m a writer, it’s what I’ve done for a living for over a decade. I’ve had other personal blogs in fits and starts. But crafting sterile informational pieces and journaling a private struggle are two very different beasts.
Writing about what goes on behind closed doors inherently requires the ability, and willingness, to bare one’s soul (and in this case, two souls) to the world. My son’s developmental disabilities and all of the ugliness and errors that have come with them do not exist independently of each other. Exposing one means exposing the other. In the beginning, I was not ready to do that, most likely because I blamed myself. I did not want people who thought I was “doing my best” to know that I could have done better. A lot better.
I still do blame myself in some ways, but I’ve been able to find a little more peace. It is what it is, and I can’t go back and undo my son’s struggles with developmental disabilities, nor change the way I dealt with it. But I can go forward, and let parents who think they’re alone in all this know that there are others out here, fighting autism and other developmental disabilities that turn their world upside-down.
When you become a parent, you prepare as well as you can. You know you’ll need a stroller, car seat, adorable little clothes, and a lot of love and patience. Being materially prepared never fully equips you for the very real day-to-day challenges – even with a neurotypical child. So when fate deals your little one a brain that functions differently from everyone else’s, it renders nearly everything you thought you knew about how you were going to raise your child useless.
This wasn’t my first rodeo – I had four kids prior to my special needs child. I knew it all! Except I didn’t. The next decade would show me how very little I actually knew, and how impotent my experience would be when faced with a child whose world is so very different from yours and mine. What works with neurotypical kids isn’t what works with kids who have autism or other developmental disabilities.
In fact, so little is really known about autism, even now, that there’s no clear answer about what does work – particularly with atypical autism (a form of ASD in which the individual may not meet all criteria for classic autism, or may exhibit symptoms which vary from the typical ones). Even the autism diagnosis itself is fluid. The diagnostic and therapeutic processes can be an excruciating labyrinth of questions with no cut and dried answers – questions which simply lead to more questions. And then more questions.
Meanwhile, as science struggles to decode the complex algorithm which makes autism what it is, parents are on the front lines, battling what can seem at times to be an invisible demon with an insurmountable advantage. At the same time, the rest of life is happening – siblings, jobs, relationships, and – particularly for single parents of an autistic child – the seemingly futile pursuit of the elusive holy grail: self-care.
All of these factors can make the path of parenthood feel like a very lonely place indeed. And for those whose child’s disabilities manifest as violence, the world can be a very scary place as well. I’ll share more about that in other posts, as autistic aggression has played a very prominent role in my son’s journey.
Are you struggling to find ways to help your child cope with daily life with atypical autism or other developmental disabilities? Share your story with me, and know that no matter how isolated you feel or how misunderstood you feel your situation is, this blog is for you. You are not alone.