|Carrying the Hope - Page 3|
I had become my own worst fear: the mother of a child with special needs. I remember, long before I became a mother, seeing the mothers of disabled children and pitying them—how shameful for me to admit! And it was autism I feared the most. The little I learned in graduate school about it terrified me. How could I survive having a child who wasn't responsive, who couldn't give love? Of course, my stereotype of autism was skewed. I've never met a mother who described her child with autism as unable to give love. But long before I faced autism, I feared it deeply.
Thankfully, there's just too much to do, postdiagnosis, to wallow for long in grief and anxiety. The neuropsychologist told us that there's a limited window of opportunity for effective early intervention, and that to minimize the impact of Brian's disability (I couldn't believe I was hearing that word!), we'd need to start therapy right away. She also told us that his age, his ability to use language, and his apparently normal intelligence all worked in his favor. In a few years, she suspected, he'd meet the criteria for an Asperger's disorder diagnosis—he'd be high functioning, whatever that meant.
We wanted a crystal ball. We still do. Would he need special education? Would he make friends? Would he go to college? Would he live independently? The last question is still the most terrifying. I still can't hold in my mind for more than a moment the image of my son's living in a group home. He simply must "get
The next month was a blur of phone calls, initial appointments, sleepless nights with a newborn, and hours upon hours spent on the computer trying to understand this world we'd just entered. The neuropsychologist had suggested that we limit our Internet research since there was so much misinformation out there. That was the only recommendation that I didn't, and couldn't, follow. I was glued to the Internet, and on a steep learning curve.
The quest for information functioned on multiple levels. Doing it contained my anxiety and gave me enough confidence to trust my instincts about providers, navigate the tricky shoals between contending treatment philosophies, and decide upon a way to proceed that made sense for me.
As families create a treatment plan for their child, they face a maze of financial, practical, and philosophical decisions. In my experience, an hour of Applied Behavioral Analysis (ABA) therapy—the most researched treatment approach for autism, but not the one we finally committed ourselves to—costs between $55 for a paraprofessional to $135 for a master's-level speech therapist. The costs of having a child on the autism spectrum can be staggering, even if you don't go with the 40-hour-per-week ABA approach. At one point, we were paying almost $60,000 out of pocket per year to pay for therapy, special diets, supplements, and school costs. Health insurance covers a small fraction of these expenses.
Quarterbacking the Treatment Team
Todd and I recently played a fun game, over a bottle of wine: "Name that therapist." We laughed, in that half-funny–half-morose way, as we named every "expert" we'd consulted over the last four years. I won't even tell you how many we counted, but I will say it was well over 30!
First let's talk about healing his body. It hadn't taken us long to start to explore the vaccine–autism connection (see sidebar, page 26). Within four months of his diagnosis, the potential connection scared us enough that we were sitting face to face with one of the world's foremost Defeat Autism Now! (DAN!) physicians, Dr. Anju Usman, who used clinical observation and lab work to determine that Brian's immune system and gut (80 percent of our immune systems lives in our guts) were pretty badly damaged by the 20-plus vaccines he'd received in the first two years of his life. He had overgrowths of yeast and bacteria, little of the "good" bacteria, hyperimmune responses to several viruses, heavy-metal buildup, a "leaky gut," and rampant food allergies.
We implemented a long list of daily supplements and began the Gluten-Free-Casein-Free (GFCF) diet. I affectionately refer to this time in our journey as the closest I ever got to a psychotic breakdown! Making sense of what it means to have a child with special needs is difficult enough. Thinking about "what might have been" if we hadn't allowed him to be vaccinated increased the emotional load. Then taking on "biomedical treatment" added another complex plot twist to a narrative already almost too demanding and convoluted for my mind to encompass.
Families who believe their child's ASD is the result of "faulty genes" may curse their bad luck. But families who believe their child's ASD is the result of an underlying genetic vulnerability that was ignited by early, intense insults to the immune system through vaccines and other pollutants must then face the choices they made on behalf of their child. I've carried anger at myself for not having questioned more, and I carry a lot of anger at pediatricians and others in the medical establishment who ought to be more careful about our rapidly growing, poorly researched, one-size-fits-all vaccination protocol.