Steve Edwards recounts how flawed childhood testing almost sent his young son down a very dangerous path
Sometimes the most haunting thing in the world is a close call. The terrible tragedy that almost happened, that could have happened, in some ways keeps happening in your mind long after the event is over. The bridge that collapsed this morning and sent cars tumbling into a frozen river—maybe you drove across it yesterday and now can’t help but imagine how terrifying it must have been, how your family would have suffered, and how your children would have had to grow up without you.
The life you know as your own and take for granted and think of as steady, as a known quantity, suddenly appears ephemeral, vulnerable, precious. You feel both lucky and guilty for having been spared.
For my wife and son and me, a close call came in the form of the two women who showed up to our house from Early Intervention one morning the fall we had moved to Massachusetts. For those who don’t know, Early Intervention is a program within the Department of Health and Human Services designed to provide “family-centered services to help children who qualify to develop the skills they will need to continue to grow into happy and healthy members of the community.” We had called EI because we were very concerned about our two year old son, whose mysterious and seemingly chronic pain (a then undiagnosed gastrointestinal issue) left him sleepless and perpetually agitated. We worried he had fallen behind with language and fine motor skills.
The two women who showed up at our house from EI were perfectly professional and friendly. One of the women engaged our son with little tests designed to assess his intellect and comprehension and how well he could use his hands. The other woman took notes and scored the tests. Whether it was stacking a series of blocks or putting popcorn kernels in a little cup with his pincher fingers, our son failed the tests spectacularly. It was hard to watch. Each time he couldn’t do what the woman asked, and each time he bolted from the activity and had to be made to come back, to try, I felt as though someone was stabbing me—as clichéd as it sounds—in the heart.
I wondered why our son couldn’t do those basic things. What was wrong with him? What was wrong with us? What did this mean?
The portrait the women from EI and their tests painted of our son was one of a very troubled child who was far behind his peers. After they left, my wife sat at the kitchen table and wept, and I shut down inside, went numb. We knew he needed help, and that’s why we had called EI, but we didn’t think he needed THAT much help, and neither did we think that the evaluation of one morning’s performance could really reflect the complexity of any child, let alone our own. No, the tests were bullshit. We knew that intellectually but down deep we were still so scared.
In the coming weeks, a woman named Jessica was assigned to our case. Though she was in no way credentialed to diagnose our son with anything, Jessica made it clear to us within a handful of visits that she thought he was autistic. “See right there,” she’d say, pointing out some behavior. “That’s typical for the spectrum.” She once told our babysitter his short arms were a giveaway.
His short arms.
Such utter horseshit.
Other times she would grab his hand and force him to stick out his index finger and point to the things she wanted him to point to in picture books. We knew he was perfectly capable of pointing to things in books.
“You know why he doesn’t do it for her?” I said to my wife one day. “Because he doesn’t fucking like her.”
We tried to tell Jessica that we suspected a medical condition to be at the heart of our son’s issues. He suffered constipation, had bad bowel movements. At night, when he woke screaming—he woke up screaming every single night, and yes, we had been to multiple doctors with complaints to no avail—he seemed to be suffering from abdominal cramps. Jessica merely smiled and nodded at this. She said of course we should keep pursuing a medical diagnosis because “You never know,” but that what he really needed was fifteen hours a week of ABA therapy for sensory issues.
We didn’t like Jessica, and we didn’t think our son liked Jessica, and we didn’t agree with much of anything she had had to say. But we had wanted to give her and the Early Intervention program a shot. As dutiful and loving parents deeply concerned about the well-being of our son, we felt as though we owed it to him to exhaust all of our possible options, even if we were suspect of them. We had also been beaten down by two years of sleep-deprivation and stress, and our financial situation had gotten complicated after my wife’s job as a work-from-home editor had been cut in half. In short, we didn’t know at all what we were supposed to do. Even if we wanted to take him to therapy fifteen hours a week, how could we have done it? We had moved to Massachusetts for my job and the only family or help anywhere nearby was her 88-year-old grandmother who lived two hours away. What should we do next? What would you have done?
In the end, we dumped Jessica and the EI program and decided to pursue medical intervention on our own. It would take us another year of pain and incredible stress to get our son the relief he needed—but we got it. On his third birthday, with the help of new meds, he slept the night for the very first time.
But if we had chosen differently?
That is the bridge that collapsed behind us, our close call. A fifteen-hour-a-week program of ABA therapy, while it might help those who truly need it, would have potentially (and irreparably) harmed our son. For sensory integration, they would have held him down and run hard brushes over his skin—but he still would have cried and screamed because his stomach hurt, because he had reflux and GI inflammation, because it hurt him to go to the bathroom. No amount of brushing his skin would have fixed his stomach. No amount of physical coercion or regimentation (or whatever else goes on in ABA therapy) would have healed him.
No, here’s what would have been accomplished: it would have broken his spirit. His precious spirit. Imagine spending fifteen hours a week in abject pain, persevering that, and then being made to perform tasks at which you were destined to fail. What would that do to a child’s self-esteem? How safe would that child feel in this world? What would ever become of that child? Luckily for us, of course, we were spared. How many others, I wonder, weren’t so lucky?
You can read more about Steve Edwards’ evolution as father in “Not Failure But Courage: Parenting a Special Child,” “The Day I Found My Voice: Becoming the Father My Family Needed,” and “Postcards from a Birth Story.”