Tuesday morning I was feeling more grateful than usual to have my job (which I'm generally ultra-grateful to have at all, as a (full-time) working mother of a child on the autism spectrum, and because it's become woefully hard to get a position as a humanities college professor, not that you follow the harsh realities of the academic job market). Charlie, exhausted from the events of Monday aka transition-back-to-school day not to mention the sore on his mouth, had fallen asleep by 6.45pm. Jim and I were glad that he was getting a much-needed rest after a tough day but also all too aware that such an early bedtime meant Charlie would most likely wake up very early Tuesday morning.
Make that 3am on Tuesday morning.
Charlie came out of his room fully dressed and peppy. We used to ply him with more melatonin and try to get him to go back to sleep. We've both learned (such is the harshness of parental experience) that once Charlie is up, he's up and you can't persuade his body clock to do auto-reset.
"Fries, fries," Charlie said and heated up a plate of tater tots. I had made sure to go to bed before midnight (all-nighters are meant for college students; mothers who have to drive their always potentially anxious child to school and elsewhere, not to mention do all the things that mothers do, need to be somewhat semi-alert). I kept debating if I should make coffee, calculating that coffee made at 3.15am would still be warm at 10am, according to the tag on the new travel cup my mom send me (thanks, mom!). I decided to wait as maybe, maybe Charlie might go back to sleep for a bit and we were certainly hoping that he would, or be snoozing by 10am at school.
We watched too much YouTube (I know it's sounded like we watch a lot of YouTube, but it was 3.45am and we have neither a TV nor a DVD or VCR). I had Charlie write more about Gong Gong coming next month. I dragged out an old puzzle of the 50 states and part of Canada. It's actually a 150-piece puzzle and the pieces aren't cut out to resemble the 50 states. Two summers ago at the beach Charlie did the whole puzzle with some help. Once a puzzle fiend---with online puzzles too---Charlie has not been interested in doing any in awhile. At 4.30am, I started picking through the pieces and found parts of Canada, Maine, North Dakota, Minnesota, California, the Gulf of Mexico, New York. Charlie started trying out different pieces together based on their shapes, just as he used to. We were just starting to piece together the upper Midwest and Montana when he told me "all done" and retreated to the couch. He sat, green worry beads in hand, and grew quieter and, at around 5.30am, was slouched over, asleep.
Charlie didn't wake up till just around 8am. At which moment---just as I was thinking I could gently urge him into the white car---Charlie told us "bedtime."
And while we would once have been insistent about Charlie getting to school on time and all that, Jim and I said "sure fine" and, feeling really relieved that neither of us had to worry about teaching an early morning class, I called the school to say that Charlie would be late.
As it turned out, Charlie was ready to go in about 20 minutes. He waited, alert and serious, for an aide to accompany him to his classroom. The aide talked to me about Charlie's mouth infection as very likely the reason for his tough Monday morning. He even wondered if getting some salt on his mouth had led to Charlie becoming upset in the cafeteria.
Jim and I had both had plans to go work in our offices but grogginess prevailed and we settled to working (by this point, with lotsa coffee for me, Jim doesn't drink it). While working through a speech of the Nurse in Phaedra, I distracted myself with the latest news about autism:
- a report that there's "no evidence" that special diets "help autistic behavior"; Dr. Timothy Buie of Harvard Medical School notes that "published studies suggest only around 30 percent to 50 percent of parents of children with autism try restrictive diets" and that "peer pressure to try a diet was intense" (ABC News)
- a study of Polish children that found no link between the MMR vaccine and autism (Reuters)
- a report that UC Davis researchers, in looking for environmental causes for autism, found that more children were diagnosed with autism in places near "regional developmental services centers in areas with highly educated parents, primarily Caucasians, with high incomes" (LA Times blog)
So many familiar topics that we've heard over the years since Charlie was diagnosed in July of 1999.
- The efficacy of the gluten-free casein-diet and the pressures parents feel to do something because someone else is doing it with "great results" and how can you deprive your child of doing what you can.
- The pressure parents feel to consider that vaccines might have "contributed" to a child "becoming" autistic; parents being hounded by the pro-vaccine safety/anti-vaccine proponents when they say that they don't believe, based on the scientific evidence, that there is a link between vaccines and autism.
- The continuing hunt to find some external, environmental "cause" for autism, even as so many children and their families are strung out from lack of services, supports, school and, what can I say, sleep (such that pronouncements by the likes of Arianna Huffington and the editor of Glamour magazine that women should stand up for their right to get enough sleep! yeh right, yeh right, yeh right).
I thought about, when we put Charlie on "the diet" in June of 1999, it just made us--me, certainly---feel so much better; feel that, by mixing up bean and tapioca and rice flour and xantham gum, I was doing something and Charlie might, would, had to benefit. What if there was a simple answer to what caused Charlie to be as he was, as he is, and a correspondingly straightforward way to help our struggling boy? Because, believe you me, if I knew we'd have to go through everything we have (even just that Saturday at the doctors' office and the ER), I would not have thought I could endure it all and especially if I heard that some other parent, who seemed to be the only one who knew what it was to walk in our shoes, had had those "great results."
But a 3am wake-up is not a catastrophe.
It makes one tired.
And holes in the walls can be fixed and, Jim being home on Tuesday morning, he did just that.
And a child can have a gosh-awful Monday back to school and then a pleasant next day at school, at home, in the neighborhood, at the grocery store.
And, as another mother of an autistic son writes, it's not about the "hypothetical cure question," but the bigger, far more complicated, very real and not at all hypothetical questions about how to care for our children, in sickness and in health; on days that start at 3aml on days when I for one am just grateful that my son is my son, here with us, and teaching me day after day and at any hour of night or day that the news that doesn't make the headlines---Charlie had a good day, we made it through another day---is the only thing you need to know.