I’m at the park, watching my beloved boy run around a playhouse when two mommies look over at me, feign polite interest, and ask if I’m planning on having another. I squirm. I want to lie and get past this moment, but I can’t.
“I’m not sure,” I reply.
One of the moms looks at me as if I just sneezed all over her blouse. I can’t blame her – she knows nothing about scheduling a visit with a neurologist for a toddler, holding him in your arms as he slips into a drug-induced sleep while electrodes are attached to his head. She hasn’t heard (or used) the words “Autistic Spectrum Disorder” to describe her child.
It took us a while before anyone believed something was wrong. Our son could recite The Cat in the Hat from memory when he was 20 months but was unable to communicate with us. He didn’t sleep through the night until he was 16 months old and he seemed to get sick constantly. His pediatrician poo-pooed our concerns. “He’s a boy,” she said. “Boys talk later. He’s fine.” But something wasn’t fine. He’d shy away from other children and seemed detached at his 2nd birthday party. Finally, after his daycare voiced concerns, we were referred to a pediatric neurologist.
The neurologist watched my son for about five minutes, asked him a series of questions, asked us a few questions, and then drew a diagram on a scrap of paper to show us where our precious, beautiful child fell on an imaginary, nebulous scale called Autistic Spectrum. He was diagnosed PDD-NOS (pervasive development disorder not otherwise specified), which was explained to us as falling in between Autism and Asperger’s. We felt lost and hopeless. All we could do was cry in the parking lot after the visit.
From that point and through the first few years, we spent considerable amounts of time trying to figure out what had happened to our son and how to make it better. I spent every free moment researching studies and therapies and talking to other mothers to find anything that would help heal our child. Our home was always messy and we were constantly exhausted. I’m pretty sure I was depressed, and dealing with unsupportive family members did not help. But we kept trying.
But you know what? Our son flourished. Of course not as quickly or quite as much as we would have liked, but flourished nonetheless. After all our trial and error, two years later we’re still seeing improvements. He speaks original sentences, he points to things, he has started getting things for himself. He notices squirrels in the trees and noises in other rooms of the house. He makes eye contact. He doesn’t have chronic diarrhea. He’s energetic. We’re still working on social skills and back-and-forth conversation, but he’s started catching up to his peers on the playground.
We got this far in his healing through work and love. He is on a gluten-free/casein-free/soy-free/egg-free/allergen-free diet, attends weekly therapy sessions, takes a few supplements, is under the care of a homeopath, attends a class designed for kiddos with “issues,” takes horseback-riding lessons, and enjoys as much travel and as many Disney visits as we can afford (not much). We’re convinced these measures have helped him (though there’s no guarantee they’ll work for others). Unlike some kids on the spectrum, he thrives on change and takes huge leaps forward in speech, especially after those stimulating trips.
There is no magic solution for helping our kid become the boy he was meant to be before something went awry – something, no one knows what. Genetics? Environmental toxins? Pollution? The epidural I had? I have my suspicions, as do most ASD mommies, but no one can say what or why or how to prevent this damage. In fact, if you are pregnant right now with a boy, then odds are 1 in 70 that he will be born with an ASD, according to the Center for Disease Control. And if you already have a “spectrum child,” the odds your second-born will have an ASD increase to a 1 in 20 chance, according to the National Institute of Neurological Disorders and Stroke.
Those numbers are part of why I quaver when asked if I’ll have another child. And though I feel somewhat prepared this time around and know I would do a few things differently – avoid plastic water bottles, turn down the flu shot, eat organic foods, alter the vaccination schedule – that doesn’t change the feeling I get when watching severely autistic children, who can’t even speak, at my son’s therapy sessions. Can my heart manage a severely autistic child? I just don’t know.
A few months ago, I took our son to a local beach resort for sorbet and outdoor playtime. As he was running around, another little boy approached him. They seemed to acknowledge each other ever so slightly before the boy ran off. I wondered if I’d need to explain to his parents why my son wasn’t saying hello. Then I saw it: a slight excited flop to the little boy’s wrist that is a telltale sign of autism. Next I noticed his uncoordinated running and complete lack of interest in anyone nearby. More autism flags. Was he ASD too, I wondered? I watched his parents tending to their other child – a little girl, possibly 10 or 11 months old – while keeping a protective eye on their boy. I looked at the little girl longingly, wondering if I’d ever be brave enough to try – to look those 1 in 20 odds in the face and just say to hell with it.
At that moment the little boy ran off towards his family, a little too fast and on a direct course towards his crawling baby sister. The father jumped up from the grass, rushing towards his now galloping son in a gentle, pre-emptive strike. “Don’t touch your sister! Don’t touch your sister!” He chided before redirecting his run and settling back on the grass near his youngest. The spell was broken; reality, fears, and worry quickly settled back into my bones with an alarming ferocity. Is that what it would be like? Would having a second child, ASD or not, turn our son into someone we had to watch with a wary eye, like an old dog who might bite without provocation?
If we wait another year or so before adding to our family, our son may be even more on track with his peers, but there’s no way to know for sure. And therein lies the rub: no one knows. In life, tragedy and joy always seem to be right around the corner. I suppose all I can do is hope, pray, and summon up the courage when, and if, the time comes to try.