Choices. Often, choices are good. But sometimes, as a parent of a child with Down syndrome, I must choose between two bad options.
My daughter is 13. In addition to Down syndrome, she has scoliosis, or a curve in her spine. She also has sleep apnea, where the back of her throat closes when she sleeps. Sleep apnea causes her body to wake her so she can breathe normally. But waking up so much makes her sleepy all day. The simplest treatment for my daughter’s form of sleep apnea is to sleep on her stomach to keep her throat more open and help her sleep better. The treatment for scoliosis is to wear a Boston brace. It’s a hard plastic device that gently pushes on her rib cage to keep her spine from curving more.
But wearing a Boston brace and sleeping on her stomach together add up to a sleepless night for my child. We work on it. We try to add time in the brace. We try to keep her from flipping on to her back as she sleeps. But after weeks of waking many times a night for both of us, I’m right back to the newborn days of 3 AM feedings and 4 AM diaper changes. My daughter falls asleep on the beanbag chair at school. I nearly fall asleep in the car line for school pick-up. No one is happy. Something must give.
We must make a choice between these two treatments, weighing the short term impacts and the long term impacts. Without the brace, the spinal curve may progress over time. If it does, my daughter may need spinal surgery. It’s a big “if”. But wearing it means she gets a terrible nights’ sleep, every night, and so do I. It feels too hard to weigh the choice between sleep now and the fear of possible surgery in the future. But the immediate need for more sleep wins, and we ditch the Boston brace.
We go for the sure thing -more sleep- and keep our fingers crossed that the curve in her spine doesn’t get worse. It’s a terrible choice to have to make. And there are no do-overs, no second chances. My daughter now sleeps well, but I still toss and turn some nights, second guessing our choices. I worry about possible surgery in the future. I wonder if we tried hard enough to make it all work at the same time. Did we make the right choice?
Joshua and I enjoying a trip to Ellis Island. Being in crowds can be hard for Josh for lots of reasons, but practice is making it easier!
At age fourteen, my son had begun to express a desire to show his individuality. It is something that most teenagers go through. Suddenly, they want to pick out their own clothes. They want to try new hairstyles.They want to explore their own individual taste in music. In short, they want to try all things cringe-worthy to parents. My son is autistic. Up until that point, he had shown very little interest in things most preteens and teens do. He wasn’t into the current fashions other than what I bought. He wasn’t into confusing adults with slang. He wasn’t into blasting Richter scale registering music. So, when he asked me to take him shopping, I was excited and somewhat scared. He was becoming… a typical teenager. This was something I had not thought would happen. Not because I did not believe he would grow up and become a teenager, I did. But because looking at him through a lens of autism, I was not sure what to expect. I could not read his social cues; I did not know what would be next. I did not know whether he would continue to show delays in certain areas. I did not know if he would suddenly show interests that were not there before. That may sound simple, but trust me, it’s not. Like a lot of parents, I stood ever alert. I was the self-professed playground police. I was the guard always at the ready to protect him from the world. I squared my shoulders, grabbed my purse and keys, slid on my sunglasses, and said…let’s bounce!
Into Uncharted Territories
My son, Joshua, had always avoided the mall as if it were a punishment. I often wondered if this were a boy thing or an autism thing. With Josh, it was probably more of an “I don’t want to follow mom through endless stores” thing. I admit, I was a true mall warrior and had shopped with the best of them. But shopping with Joshua was different. He would lag behind no matter how often I prompted him to keep up. He seemed to have a hard time trying to walk beside me. Forget about him trying to focus on my witty banter. After finding that I was talking to thin air for the fifth time, I stopped dead. Frustrated, I looked back to yell for him to catch up. That’s when I saw that he was tracking my footsteps with his eyes.
Fascial expression recognition was hard For Josh to understand, but after a few hundred selfies with mom, he’s getting it!
Anticipating my movement by social cues was hard for him. He had a hard time understanding that I would stop unexpectedly to ooh and aah over a sweater in a store window. He couldn’t understand that my deep exhale was a signal of impatience towards teenagers stopping directly in front of us to talk. He couldn’t follow these social cues. He was too busy watching my feet so that
he could move with certainty through the crowded mall full of holiday shoppers. I stopped in front of what I thought was an age appropriate clothing store for him. I knew I would never fit into any of these styles again. As we went inside, I watched my son suddenly come to life. He circled the racks of clothes like a prize fighter. I held up a camouflage pair of pants. Wait, was that a smirk? I held my breath and reached for a pair of cargo pants. “Mom those are skinny jeans” he responded. Now that was almost with an attitude! Oh happy day. Was he acting like…hell, like I did at fourteen shopping with my mom? I approached who I thought must be the store manager. I owned shoes older than this kid.
A Mother’s Fear….
“Tell me, are there any colors that my son should not wear?” I asked. I was trying to look cool and confident. “Excuse me?” he answered, looking confused and bored. How do they do that? I repeated my question. “Are there any colors my son should not wear?” His gaze followed mine to the front of the store where my son stood. He was examining a pair of bandana-printed sweatpants as if he would be quizzed on them later. “My son has autism. He wants to shop for himself. I need to know if there are any colors he should not wear. Gang related colors?” The manager smiled. He suddenly looked old enough to buy a beer. “That’s a good question” he replied. We spent the next few minutes discussing this. He explained that, where we lived, gangs were identified by sports teams, not colors. He ran them down to me by pointing out baseball caps hanging behind the register. I made mental notes. My son bought a pair of sweat pants and a sweat shirt. They matched. He paid with his own money at the register from his own wallet. As we exited the store, I asked if he wanted to visit the food court.
“I’m good” he replied. That day my son joined the ranks of “teenagedom” while I continued to protect him from the sidelines. It was a good day.
Understanding the Dangers of the Unfamiliar Paths
Individuals with autism may have difficulties understanding social cues in their environment. This inability could place them at risk. Wandering; victimization from others; as well as having their movements or interactions misunderstood; are real dangers for those diagnosed on the spectrum. Autistics, parents, and caregivers need tools to help protect them when they are in the community. Autism Speaks offers several tools to help gain insight into societal dangers. They provide suggestions on how a community can help to safeguard their loved ones. While my concerns may not be shared by everyone, for me they are real. Pretending not to see the elephant in the room does not make it go away.
Social gatherings are great practice for Joshua. Everyone dressed up for a formal dinner. Ok, maybe this was one selfie too many!
range from cell phone use, avoiding victimization, and asking for help, to interactions with law enforcement. You may need to practice these plans many times with your loved one. Knowing what can possibly happen and being able to anticipate it is power. Safety is being prepared, not dealing with the aftermath. Remember, like fashion, nothing is usually one size fits all. But can we afford to not try it on?
syndrome, I must choose between two bad options.
