© Monica Arce 2013. All Rights Reserved.
Mission Peak Unitarian Universalist Congregation
April 7, 2013
Patterns. That’s where it had all begun. My son was fifteen months old, and was obsessed with a pattern on the rug at my sister’s house in Sausalito, where we had flown in from Atlanta to spend Thanksgiving. He would spend a great deal of time crawling on the rug in his own, unique way, with his back and legs fully straightened, following the delicate, intricate patterns of my sister’s native American rug with his small body. He was surrounded by people who loved him: Grandparents, parents, aunts, uncles, cousins, and things that would fascinate most toddlers: new faces, toys with blinking lights, movies on the television, purses, toilets. Yet…none of these seemed to hold the same fascination for him as did the patterns in that rug. He would spend hours upon hours, if we let him, following the patterns on that rug, as serene and calm as if he were walking a labyrinth.
I asked my mother and sister, both practicing clinical psychologists, as to whether something might be wrong with my son. This strange behavior, combined with the fact that my son didn’t speak or walk yet, was causing me to be concerned that he might not be “normal”. They both did their best to assure me that David was, by all accounts, normal, and that each kid reaches milestones on his or own schedule.
I brought my concerns to his pediatrician at his routine visit after that trip, who reassured me that his delay in speech was common in children where two languages were spoken in the home (my ex-husband is Costa Rican), and that a lot of babies didn’t walk at his age. He told me that we would reevaluate him at 2 years, and go from there. When at two, I told the doctor he had learned to walk, and was babbling but not making any recognizable words, he referred me to the local chapter of No Child Left Behind’s early intervention services, where he was diagnosed with PDD-NOS, or Pervasive Developmental Delay, Not Otherwise Specified, which qualified him for early intervention services. At this point, I was still reassured by everyone I spoke with that, with the provided Occupational, Speech, and Social therapy, my son could still become “indistinguishable from his peers”. I later came to realize that this state, that of being “indistinguishable from his peers” was a holy grail of sorts for many parents. It became apparent, quite early on, that this would likely not be the case for my son.
As we lived in a somewhat rural suburb outside Atlanta in a neighborhood where there were no other kids his age to play with, and it was strongly suggested by all the professionals we spoke with that David’s development would strongly benefit from socializing with other children, we decided to place him in a preschool with typically developing toddlers. His therapy team would come and work with him there. I took up a job as a medical editor and proofreader in an office close enough to his school that I could visit him at lunch, which I did every day. Things seemed, on paper at least, to be settled. By all accounts of those closest to me, I was a great mom, doing all the right things, and getting my son a good start in life.
Then, the calls came from school. David is banging his head on the floor, hard enough to bruise. David refuses to nap , and wakes up the other kids, upsetting their schedules. David doesn’t seem interested in the other children, and keeps running away from the group. Fortunately, it was around that time that he qualified for an intensive special education program through the public schools. We enrolled him there, and placed him in a private ABA-based after-school care program. He had such a positive response to the after program, that we signed him up there full time, five days a week, while his dad and I worked full time. David also had another evaluation, this time by a psychologist, who ran some standardized tests, and diagnosed him as having mild to moderate autism.
What followed was a lot of research into autism, what it meant, what treatments were available, and how best to care for my son. I decided to look everywhere I could for information. I had expected that there would be some sort of gold standard for treating autism that everyone agreed on. I would choose that treatment, my son would thrive, and all would be well.
What I got was a rather rude awakening. I found medical journals, blogs written by adults on the spectrum, treatment centers of all types and varieties, each of them promising a fool-proof journey to curing my son. Everywhere I turned, there were loud, adamant voices telling me that I needed to start doing this or that, and NOW, or my child would suffer needlessly for the rest of his life. These voices came from my family, adults on the spectrum, physicians, psychologists, the media, other parents with children on the spectrum:
“You need to get him into a Lovaas program.””No, the Lovaas method is abusive! I had to go through it as a kid, and I have PTSD as a result!”
“Autism is caused by heavy metal poisoning. All he needs is chelation therapy, and he’ll be fine.”
“Chelation therapy will kill him! He has leaky gut. That’s all it is. Stop giving him food with gluten and casein in it, and he’ll be fine!”
“No, it’s the vaccinations. They’re giving too many of them too early. There’s a class action lawsuit you can get in on.”
“Get him into a Floortime program. You can connect with him easier through play.”
“No! If you do something as experimental as floor time, you’ll be wasting time he could spend in an ABA program”
“There are medical tourism programs where he can get stem cell therapy. Not sure if it’s legal or not, but…hey, it’s worth a shot, right?”
“You don’t need to treat him at all. After all, he’s not sick! It’s just a different way of thinking. Would you cure Einstein? Beethoven? Newton?!”
“No, he’s sick! Autism is a disease, from which he can be cured! Not treating him is tantamount to neglect!”
It seemed no matter what treatment plan we followed, there was always going to be someone somewhere telling us what we were doing was wrong, and continuing to do it was going to cause our son irreparable damage. But we had to do something. We had to decide what would be best for David, and navigate the criticisms and take the support where we could. There were, and still are, Special Education Teachers, Occupational Therapists, Speech Pathologists, a respite care worker. And, with the advent of David’s tantrums–which often include banging his head on the floor to the point of bruising, hitting his head with his hand, and putting dents in the walls with his head and his feet–Behavioral Interventionists. There were years when he would bolt away from me or from whomever was caring for him, leading to panicked searches and public scrutiny. More than once, he managed to find a way to unbolt the front door when I turned my back and was brought back by a concerned neighbor who told me she’d found him wandering down the street. How I’ve managed to dodge a CPS complaint, I’ll never know.
Another time, he managed to bite his respite caregiver’s hand in order to break away from her, and bolted into the street before an oncoming car. Fortunately, experience had taught me well, and I’d chosen to live on a quiet street with only a couple hundred yards between a sharp curve and a stop sign, leaving very little room for the acceleration of cars. The caregiver was traumatized, as was the driver of the car. The reason he had bolted from her with such insistence was the fact that our neighbor across the street had his garage door open. He has a fascination with garage doors which I’ve yet to understand.
We enlisted the help of a Behavioral Interventionist at that time as well, to train him to stay close to his caregiver while in public. It involved a lot of trial and error, the occasional wind sprint, and blueberries. Lots and lots of blueberries.
Then there were notes sent home from his classroom and from his bus driver, indicating that he had taken off his clothes, or gotten out of his seat, or tossed his shoes out the window, or bolted away from supervision. It always seemed as though just as one fire had been put out, another one was starting.
There have been developmental pediatricians, neurologists, otolaryngologists, allergists, and a host of other physicians along the way, trying to understand what it is that causes him to continue to tantrum, and why he has regressed in some areas of self-care; whether the reason is physiological, psychological, or simply behavioral. Sometimes we get good answers and seemingly perfect solutions. His psychiatrist recommended melatonin supplement to help counteract his sleep disturbance. His otolaryngologist conducted a sleep study, which confirmed he had sleep apnea. This led to a tonsillectomy and adenoidectomy. He was given a skin test by an allergist, which told us he is allergic to molds and dust mites, which prompted our better care of his environment, and led to the use of allergy medications and nasal sprays.
Then there are conundrums which seem to have no answer. Such as why, after three years of hard-won toileting mastery, he regressed in that area of self-care. There were tests for diabetes, which were negative. There was a trial for an anti-spasmodic medication, which proved ineffective. There have been x-rays, ultrasounds, cystoscopies and MRIs, all ruling out any obvious cause, save some rather complex gastrointestinal issues, which may be disrupting his self-control in all areas of toileting – which I won’t get into here. (You’re welcome). So his next appointment is with a gastroenterologist. If that visit is inconclusive, a trip back to the neurologist may be in order. And, as always, we continue to work on David’s level of communication, so he can tell us what hurts and when, or what it is he wants but is not getting, which is causing him to tantrum.
It’s a lot of work, as I would suppose all parenting is.
That isn’t to say, though, that there aren’t plenty of wonderful moments as well. I’m still getting the firsts that almost every mom looks forward to: First steps. First word. (well, in David’s case, it wasn’t a word spoken, but a word signed). First spoken word. First sentence. The milestones are there; they’re just on a different timetable than those of most other kids. On better days, I like to refer to it as his taking the scenic route.
And we are able to take special outings together, for which he’s able to tell me where he wants to go. They’re just generally the same locations, and we must follow the same routine once we get there. He enjoys visits to and from extended family, especially if they have blueberries for him, which they generally do. I have a sister and brother-in-law who live in Oakland with his triplet cousins. His dad and I are divorced but, by all accounts, he loves spending time equally with both of us and with his step-siblings. He’s even been to Tahoe and would likely have enjoyed himself, if he hadn’t somehow managed to get sick. He seemed to enjoy the extra love and attention from his aunt, uncle and grandparents in spite of this. And he’s actually become quite independent in his own way, and helpful with household chores like choosing foods for grocery shopping and operating the dryer, both of which must be done the same way every time. But he’s helping, which is the point.
I can’t help but feel, though, that he’s missing so much of life because of whatever is causing his behavioral outbursts. In her book Carly’s Voice, in trying to explain to her father why she exhibits behaviors like I’ve described for David, Carly Fleishmann becomes frustrated, and says she wishes that he could spend one day in her body. I would love nothing more than to do that for David. If I knew what his symptoms were, I might know what kind of specialist to take him to, and what kind of diagnostics and treatments might be available for him. The hardest part of this journey is the not knowing.
I suppose, in many ways, though, that’s something I have in common with all parents. The journey is unpredictable. You find something that works, establish a pattern around that, and live within it, until it no longer proves effective. Then it’s a mad scramble to find something else that *does* work, and go with that until it runs its course. There are times when it feels like I’m trying to run wind sprints. Up a steep mountain. During a landslide. And I’m not even sure that there is a peak to be reached for my efforts, or that if I do reach it, there will be anything on that peak that will be of benefit for my son. But, I also know that I have to keep going, because maybe, just maybe, there will be.