Last summer, a friend and I met up with our kids at a splash park, the not-quite-pools that have glorified sprinklers and rubberized floors so no one slips. Her daughter is a good deal younger than The Baby, but we met up anyway because he was just a little sack of potatoes and didn’t care either way.
While my friend’s daughter toddled through the sprinklers and screamed with delight, I sandwiched The Baby in between my feet next to a little fountain, hopeful that he would notice it and maybe even play with it. Instead, he just sat there like a lump and his grand finale was toppling over as if he had no bones at all and scraping his face.
It was a short playdate and afterwards, I sat in the parking lot of the splash park and wept. While other people’s children forged ahead through their developmental milestones, mine seemed stuck at 3 months. Being around other babies reminded me of this; life flaunting in my face that my son still didn’t smile at me or have motivation to do much of anything.
You see, I used the words “sack of potatoes” as a kind of humorous description of my son but that humor covered a bitter truth. Sure, there had been some progress, but it was miniscule and it took forever. It took him a year and a half to roll over. He wasn’t sitting up on his own at his 2nd birthday.
My post-play date sadness wasn’t from jealousy or anger. It was fear. Fear that this baby will never grow up and he will exist in a perpetual state of infancy, never experiencing the world. Fear and weariness that I will perpetually have to continue to care for a child who doesn’t smile or respond to me, doesn’t seem to care if it’s me or Hitler giving him his bottle. On most days, I could soldier on and forget about those fears but there were days, like that day at the splash park, where I had to confront them instead.
Cut to January of 2018. On a hunch, I had made an appointment with a new neurologist about a sleep issue. This doctor had come recommended from other moms of kids with Down Syndrome. During the appointment, The Baby did his usual thing of chewing on his thumb and waving it in the air and staring at the lights and ignoring all the people in the room. We talked about The Baby’s sleep issue and then the doctor said, “I notice that your son is in his own little world. Tell me more about that.” Again, I almost wept as I described how little interest he seemed to show in the world. There was no wonder or delight or curiosity, no motivation to explore.
The doctor described a fairly new treatment for kids with Down Syndrome.
Yeah, Prozac- the anti-depressant, anti-anxiety meds. Apparently, the slow processing speed of kids with DS comes from their brain neurons firing too rapidly and so their brain waves and functioning looks like complete chaos. Prozac helps cool some of that down so that they can actually attend to the world around them.
I asked about side-effects and I remembered that Alex had read about this treatment a while ago but we dropped it because there were so many other things going on. It took a 30 second discussion with Alex for us to say, “Let’s try it.”
It has been nothing short of a miracle.
In January, at 2 years 4 months, The Baby had just barely started sitting up on his own. He wasn’t interested in feeding himself and only mildly interested in toys. Much of his day was spent doing self-soothing stem behaviors like hitting his hand repeatedly against his mouth or waving it in the air.
For over two years, we didn’t worry about baby-proofing our house because there was no need. He couldn’t move around and, even when he started to roll around, he wasn’t interested in getting into trouble. We felt like there was very little movement that he was doing purposefully. He can now scoot around to the point where we’re having to remind The Kid to keep the door to his room shut and keep small things off the floor. His favorite thing in the whole world is the shower and if he is anywhere near our room (where he takes showers), he will pull himself into the bathroom.
When we went to Colorado in June (six months after starting Prozac), I left The Baby for a few minutes in the living room to get lunch going and I heard a loud thump. When I looked over, I realized that he had pulled himself up on a chair and then promptly fallen over. He pulled himself up! That’s impressive not just because he could now physically pull himself up but because mentally, he thought, “I want to see what’s on top of that chair” and then had the wherewithal to follow through.
He can certainly grab food and stick it in his mouth now and, if you aren’t careful, he’ll grab your food and stick it in his mouth.
It’s amazing and it has given everyone in the Wise family so much hope about his future.
This weekend I took him back to that splash park. I am happy to report that he did, in fact, exhibit behavior befitting of someone who had bones. He sat up, tried to hold onto the fountain of water in front of him. He even placed his hand over the water to stop it from coming out. He still hasn’t squealed with delight yet, but I could tell he enjoyed it.
Oh, I am so thankful for progress. Parenting this baby has not been easy and probably will continue to not be easy but we cling to those glimmers of hope like they’re all that we have.
***I am obviously not a doctor. I’m not even related to a doctor. We considered the risks of giving our 2-year-old Prozac and decided that the benefits outweighed them. That was the decision that we felt was in the best interest of our kiddo. You might feel differently and that’s 100% okay. Talk to your doctor, obviously.