I Only Play A Doctor

I am quickly learning that one of the biggest challenges of having a child diagnosed with Autism is trying to figure which treatment options to try and for how long. I am not a doctor; I only play one on television and via social media. And while, I don’t actually have a medical degree I do know my daughter. And I am hoping that by following Caroline’s lead we will be able to figure out what are the right options for her.

Now, no judgment when I share what got me to this point. When Caroline went to her new pediatrician she was her normal active self and he suggested we might want to try some ADHD medications. At first, I was resistant. But when he told me that if the medicine didn't work it would be out of her system in a couple of days, the temptation of a moment of calm, got the best of me. Caroline goes nonstop from the moment she wakes up until she crashes, and she doesn't require much sleep. Well, Caroline did calm down once we started the Quillivant, but I fear too much. She has also started collecting obsessive habits, since starting the medicine, that limited her from participating in activities she generally loves. Case in point, Caroline loves to play in the water.  Her physical therapist visited her at school while her class was on the splash pad. Caroline was so focused on picking at her fingers she did not play in the water, barely engaged with her therapist (Caroline is always an active participant in therapy), and showed a decrease sense of balance.

This setback is particularly disappointing because Caroline had such a great couple of weeks: her balance was improving; she was saying more words, stringing multiple signs together, and eating a lot by mouth. Okay, who am I kidding? Everyone who knows me knows that I take every setback hard. I try to roll with the punches but it is so hard when there are so many. Like every parent, I want the best for my kids and it is so hard to see her struggle so.

Fast forward three days, Caroline became increasingly OCD--she would sit and put objects in a container for hours and would scream if we took the container away. When we took her to a follow-up doctor's appointment, Caroline spent 45 minutes wiping down the office with a Kleenex. This behavior was terrifying because we didn't know if it was a new symptom or a side effect of the meds.  We stopped the medicine because the  doctor felt the stimulant in the medication was causing the OCD behavior-thankfully, he was right.

The day after we stopped the medicine Caroline was back to her to her normal, active self. And this led to the single most terrifying moment John and I have experienced as parents.  John was cleaning the kitchen and Vivian and I headed upstairs to play with puzzles.  John thought Caroline was with me, I thought she was with John.  When John came up and realized Caroline wasn't with me, we both bounded down the stairs.  When we got to the bottom both of hearts stopped, the front door was ajar.  Caroline left.  We both ran down the street. Caroline had wandered down the street toward the neighborhood pool.  A family in a mini-van found Caroline.  When we got there, the man said "It was a close call, she was wandering in the street. You should watch your kid more closely."  I looked at the ground and swallowed hard.  Did he think I didn't know what could have happened?

I never want to experience that stomach dropping fear again and we have taken precautions. We have a latch on the front door (like at a hotel), and the door beeps whenever it is opened. However, wandering off is very common in autistic children a study conducted by Kennedy Krieger’s Interactive Autism Network, found that 49 percent of children with autism attempted to wander between the ages of 4 and 17. When this is combined with Caroline's decreased sensitivity to pain, fearless tendencies,  lack of awareness about her environment, decreased ability to communicate, and her hyperactivity her wandering is extremely dangerous.  To the family, who found Caroline, please understand we are forever grateful for the help you offered but we are also keenly aware of what was at stake--more than you can imagine.

I am not sure if we were lulled into a false sense of security by Caroline's decreased activity because of the ADHD's med or if John and I were just off our game that day.  But I learned from this experience is that we must trust our instincts as parents.  I was reluctant to try the ADHD medications but did so because the doctor focused on the possible benefits and did not spend any time talking about the possible side effects-which in Caroline's case were OCD like behaviors.  In the future, I will be doing much more research and asking even more questions before starting a new medication or therapy.