Jennifer Byde Myers
Jack is asleep in my bed right now. He wandered in while I was folding clothes; I pulled back the covers and asked if he wanted to snuggle. He’s non-verbal, but he made a happy sound I know to be yes, and from across the room he leapt in, buried his head under the pillows, and fell back asleep as I returned to my unmatched socks.
It’s hard to believe that he’s the same boy who as a three-year-old didn’t sleep for 52 days. Fifty-Two days where he didn’t rest longer than twenty-thirty minutes in a row and no more than one to two hours in a 24-hour period. Back then he would scream and thrash the entire time between passing out. It’s an example -- the worst one -- of what we call “episodes,” what appeared to be pain from unknown source, and it happened every five to six weeks for nine to eleven days. “Episodes” with severe agitation, self-injurious behavior, and complete non-compliance -- and that doesn’t even cover the toll it took on his pallor or his parents; both turned gray and haggard.
We’ve come a long way at our house. Jack has grown and learned and changed, and we’ve all developed better coping skills.
We also found the right medications.
Jack's first diagnosis was benign congenital hypotonia, which we eventually got upped to cerebral palsy (ataxia). In those early years, most people, teachers, family, and therapists focused more on his physical disability than any behavioral or academic issues, so the flapping, the avoiding eye-contact, the spinning plates and tapping forks- the autism diagnosis came later.
Along the way, Jack had multiple evaluations, including brain scans (MRIs), examinations of his cerebrospinal fluid, and genetics screens. Other than an early test that showed “delayed myelinization” -- his nerves weren’t growing conductive sheaths on schedule -- the tests were inconclusive. The results didn’t give us much guidance as to how to help Jack make the most of his gifts and minimize his challenges, and we were all at a loss as to how to help Jack through his episodes. We suffered. He suffered more. We tried changing his diet, his sleep schedule, his curtains. We tried Tylenol.
Jack started kindergarten in the fall of 2005, a few months before he turned five. It wasn’t our idea, but the district’s, and it wasn’t a particularly successful transition from the preschool/early intervention setting. We thought he wasn’t ready, since he wasn’t able do some simple precursors to a successful placement, like walk from classroom to library to lunchroom without dropping to the ground. He couldn’t ride the school bus without trying to get out of his seat belt and wander the bus. He couldn’t engage in classroom activities like circle time without bouncing up to pace around the classroom. It was more than not being ready for kindergarten. We came to realize that these were internally driven behaviors, ones he could not control, not even with a 1:1 aide.
Ironically, I think the idea of seeking medication for my son came out of my reading a magazine article discussing the over-medication of America’s youth. As I read the descriptions of ADD and ADHD, it was a checklist of so many of my son’s behaviors.
Eventually, considering his difficulty at school and at home, we decided to consider psychoactive medications to help Jack. And as much as we believe in science, in the power of medicine, it still wasn’t an easy decision for us as a family. One of the things that made the decision difficult for me were the judgments I heard all the time, everywhere, about the use of these kind of medications for children. I can’t do much about radio and talk show guests, and I’ve learned to pretty much ignore them anyway, but the harshest critics have always been other moms, some in my social circle. And the most judgmental people always seem to be those with kids on the spectrum.
Some of these moms believe in the “toxins cause autism” myth. Or if they have skipped over that argument, they might call parents who turn to medications “lazy,” choosing to define my son’s adverse neurochemistry and the resulting behaviors, as being the fault of non-parenting, or bad parenting. And of course, I’ve been questioned for “putting all those drugs” in my child.
As a culture, we are generally okay medicating other medical issues children face, aside from those who have a religious reason for not seeking medical intervention. If my child had diabetes, you certainly wouldn’t tell me to deny the kid insulin. You might even suggest I have an insulin pump implanted under my child’s skin to have a more regulated drip of the necessary drug. Why would a parent be so quick to take care of diabetes, but not want to try a potentially life-altering drug a with a half life of two-fours hours? It is out of the child’s system by the next day! You could know in two hours if your child feels better, can concentrate, can sit in class, or can go out to dinner. If the child is verbal, a parent could know in an afternoon how to improve their child’s life because your child could tell you that they felt better, calmer and able to focus on the classwork.
My husband and I began the discussion together, and soon expanded it to include our extended family, which includes psychologists, the medically savvy, several scientists, a social worker and an elementary school teacher. With their contributions, and our own research, my husband and I had enough initial input for our first step: consulting with our pediatrician. She agreed that our son might benefit from pharmacological intervention. While she has guided our family through many harrowing turns, she was also willing to refer us to doctors and specialists with greater expertise in certain aspects of our son’s health, which we appreciated.
In this case she made an excellent recommendation to a child psychiatrist with a tremendous amount of experience in prescribing psychoactive medications for complex children. Because our son is non-verbal, it was very important to me that we get a doctor with a lot of pediatric experience; I didn’t want a doctor for adults doing any more guessing than necessary.
We like this psychiatrist. He has a great knowledge of pharmaceuticals, and explained at length the differences between the various medications and their side effects. In addition to drawing on his clinical experience, he gave us guidance from the research literature, with just a touch of the anecdotal.
The right doctor can make all the difference with our kids, just like the right teacher can make a class successful. It took some experimentation to get the timing and dosage right. In the beginning, the psychiatrist made himself available for phone consultations. He recommended our son start with a stimulant medication commonly used in treating ADHD, and try it in a short-acting, low dose. It was wonderful to be able do a short trial (three days, in different environments) to see if this type of drug could help manage some of Jack’s symptoms.
Once we knew that this class of drugs would work, we looked for the best way to give Jack the appropriate dose that would last the course of the day. We placed him on the drug for one month, and visited the doctor again. After describing the changes in his behavior, we tried adjusting the dose downward, to see if we could get the same results with a lower dose of the drug.
I think we have figured out the right dose for Jack. Our psychiatrist was very specific, “You should not see a zombie. You should not see a flat child. It should be your child, with your child’s personality, who is able to focus on the teacher a bit longer, able to sit still long enough to complete assignments. Children who look like they are drugged are being prescribed too much.” Once we got the prescription nailed down we visited the psychiatrist every six months to ensure that we did not need to make adjustments.
My son, medicated, is more available. When Jack takes the medication he is able to be present in the classroom, follow some directions and learn, he can also sit nicely enough to eat meals at a table. He can even manage to use a fork (pre-loaded by us). The second day he was on his medication, we were able to take him to brunch, in public, at a restaurant, an activity we had given up on. He was not drugged-out or a zombie at the table. Instead he was a smiling boy who was able to sit for nearly an hour, eating with his extended family, without stimming out of control, grabbing the tablecloth off the table, or spinning plates. We already had a limited number of activities that were successful for our multi-generational family, and if eating had been taken away from that list it would have reduced his interaction with grandparents dramatically. This might seem silly, but our family ... well, one thing we actually do together is we eat. It's something everyone can do. It makes us feel safe.
This wasn’t the end of the medication story for my son; it rarely is for psychoactive medications. Children grow, the dosages need to be adjusted, some medications lose efficacy over time. This is the norm, and where many people get discouraged. And though I knew that this might happen, it was still surprising a year later when when we saw behavior changes, and it took me at least a week to figure out why it was happening.
We started having very rough afternoons. Jack couldn't sit for dinner, couldn’t take a bath with his sister without kicking her, and couldn’t follow any type of direction. We also saw tears, temper tantrums and he was just nearly beside himself every afternoon throwing himself to the ground.
Basically, the extended release was wearing off as he got home from school. It was the perfect storm: Jack has an expectation of how he feels all day, and it was gone. I have an expectation of how many directions he can follow, and he couldn't follow any. I am tired from being me all day, and, of course, we have "the Four-O-Clocks" at our house like any/all families do. So we gave Jack 5 mg of a shorter release of the same medication in the afternoon. He quickly gained control of his emotions and his body until bedtime. Phew.
On a new medication, a year later, my son was still happy, available to learn in school, with less stim behavior. He went to sleep-away camp. He went on road trips. He played gently with his baby sister.
Later, in consultation with the psychiatrist, we added a second daily medication. Our son was having bouts of inconsolable crying and agitation, which sometimes added to his sleep issues. The psychiatrist suggested an anti-depressant, which has smoothed out the agitation and reduced the crying jags. Again we made adjustments, increasing over the course of a year, and more recently decreasing the dose to see how he responded. And although we went back to that original dose, we will try again in another year, and will continue to evaluate each medication to make sure he is never on more or less than he needs.
There’s a third medication we use as needed, for migraines. At some point we all put it together that Jack might be having terrible headaches. I have migraines, as do do several people in our family, on both sides. We added an anti-migraine medication to be used when his behavior indicates he may be experiencing, or when we thought a migraine was imminent, based on his behavior. The medication has made a huge difference for my son, and for our whole family. And those “episodes” of days and days without sleep are now extinguished, or at least drastically diminished, as long as we get him his migraine meds as soon as we see the symptoms -- which had always been there along with the thrashing and restlessness: light avoidance, pressing his head into the pillow, lack of appetite.
Our life, and most importantly, his life, has been made so much better because of medications. He can function, we can do things as a family, travel on planes, visit other families' homes. Still, every time I open the cupboard and see the little brown bottles I have mixed feelings. I feel a little shame, somehow my emotions clouded by all the times I’ve heard people malign parents who put children on psychoactive meds. I also feel a little pride, because my husband and I didn’t just settle for “that’s the way it is with autism”, but worked with our son’s treatment team to get the correct medications that have changed his life for the better. Mostly I feel relief that my child is happier, more present and ultimately more included since he began taking medications a few years ago.
As parents, we strive to give our children the best life they can have, then support them as adults to help them reach their potential. These medications don’t “fix” Jack, or alleviate all of his frustrations, or remove all of the barriers his body or society has put before him, but they give him a better chance to participate; perhaps a little boost to help level the playing field. And these drugs are not one-size-fits-all; my son’s autism is different from his classmates, and he’ll be different when he is a teenager, or an adult. Choosing a doctor, finding the right medications -- I know it’s not a one-time outlay of emotion and time, it will be a life-long affair but one that will be worth every minute of research, if it makes his life a little easier, a little richer.
These medications allow him to have access to more information, more environments, and more relationships so he can do what we all want to do: learn and grow and love.