He’s stuck in his pajama shirt again. I watch him writhe and twist his way through it until he finally pokes just his little face through the head hole. His owl-shaped eyes, the color of coffee, perk up through the backdrop of the tiny race car jammies as he laughs and says, “Look! I’m a snow cone!”
My husband and I glance at each other. To an outsider the joke makes no sense, but we understand the off-beat connection because nobody knows him like we do. As he finishes his mission of putting his shirt on by himself, he beams with pride from this accomplishment. My son is beginning to compensate for his challenges with his humor. At four and a half, he’s becoming much more aware of his limitations, and I know I can only shield him from his disability for a little longer.
The signs were faint, but they were there. He came into the world a calm and sleepy baby, giving us big gummy smiles and bottomless giggles right “on time.” Then, he rolled his chubby little body over and sat up late — the pediatrician told me it was fine. I was a first time mom. I wanted to believe the doctor even though my gut told me something wasn’t right.
When he began daycare, I told the teachers to keep an eye on him because he rarely cried when he got hurt. Later, his daycare teacher remarked that she had never seen a kid crawl using the backs of their hands before. He would come home each day with cherry-red marks on the backs of his plump and dimpled hands but again, his pediatrician assured us it was nothing of major concern.
His next daycare teacher said he couldn’t drink from an open cup and suggested he should receive Early Intervention services. We reasoned away that we had never given him an open cup at home because we assumed he would spill it all over the place. Of course he didn’t know how to use one yet. Out of caution I pursued it and to our surprise, he qualified.
As he grew into a stumbling and defiant toddler, I began to anxiously anticipate the end of each work day because once I walked in the door, a tiny tornado awaited me. A self-identified highly-sensitive person to begin with, now I had a child who was a bull in a china shop. Hold my hand in the parking lot? He most certainly would not. Stay in the grocery cart while I pick up a few things? I crossed that off the list of things other mothers seemed to be able to do with their toddlers that I had to avoid. Add to that list doctor’s office visits, Target, and indoor play places to name a few.
I did some of these things on my own with him because I had to, but I dreaded them because his behavior was so unpredictable that I never knew who I was going to get. Those errands and outings usually ended in danger or disappointment. I blamed my own competence as a mother. At seven months pregnant with his baby sister and with my husband on a business trip, I grew superhuman strength in the dead heat of August and lugged the giant gray glider and ottoman out of his room because he wouldn’t stop climbing and swinging from the top of it. He giggled and jumped like a little capuchin monkey. I was afraid for his safety and my sanity. In retrospect, his need for sensory input to regulate his nervous system overrode his ability to use his “listening ears.”
As he aged out of EI, our dedicated yet puzzled developmental specialist suggested we seek more answers by way of a neuropsychological assessment. Cognitively, he was incredibly bright, social, and verbal but when he was tired or upset or sometimes for what appeared to be no reason at all, he couldn’t access any of these skills. He had even hit me out of nowhere in front of the doctor during one of the testing sessions, but I was so used to being told we were overreacting and he was “just a two-year-old boy” that I didn’t think she’d tell us anything we didn’t already know.
I tried to remain focused and calm as we sat in the doctor’s office to go over the evaluation, but on the inside I wanted to cry and scream. We finally had a name for all the things that were “off,” but were seemingly disconnected. I thought I’d feel relieved but instead, I felt hopeless.
He was diagnosed with a neurological condition called Dyspraxia or Developmental Coordination Delay (DCD). How did I have a Masters Degree in Special Education and ten years of teaching under my belt and I had never even heard of it?
I blamed myself. I was his mother, after all. Did I let him stay in his bucket-seat too long because he was so content in it? Was it because I had been on antidepressants in the past? Was it because I switched to formula after a month of breastfeeding? Should I have stayed home with him instead of leaving him in the care of a nanny while I went back to my classroom? These thoughts swirled around my head each night in bed as I tried to process the diagnosis and forge a path forward.
I took a leave from my teaching job after Thanksgiving so I could take him to all of the evaluations and appointments that followed. We switched to a more play-based preschool closer to home that seemed to be a better fit. Soon after, the COVID-19 pandemic began, and like many families, I was suddenly on lockdown with my newly three-year-old son who now had a diagnosed disability but couldn’t access the services required to help him. We couldn’t go anywhere to get him the sensory input he so clearly needed, and I spent months — and probably too much money on Amazon — inventing ways to crash, bump, squeeze and jump safely around our tiny little house while my husband attempted to practice law from our kitchen. It was chaos.
Dyspraxia is something that statistics have shown impacts up to 10% of the population, and yet the United States is way behind other nations in awareness and research. Like Autism Spectrum Disorder, it operates on a continuum of mild to severe. Some people can function just fine with the right support; others may never learn to drive a car or live independently. People used to call it “clumsy child syndrome.” Not only is it a little offensive, it’s also a misnomer considering that along with motor planning, it can (and has for him) impact emotional regulation, sensory processing and executive functioning.
There is a reason why some call it an “invisible” disability. When you see him, he looks like your average four-and-a-half-year-old boy. Suspended somewhere between toddler and little kid, he’s got some bruises and bug bites on his legs from running and playing outside. He loves pizza and popsicles, dinosaurs and his cousins. He is incredibly articulate at times, saying things like “I’m not interested in playing this game” or to his little sister, “Avery, I need space.” He loves to build with Magna-Tiles and LEGOs, and is especially interested in construction vehicles. Now when I lay awake at night, there is usually some song by Blippi about construction vehicles rolling around in my head as I plan to tackle our next obstacle that is still a year away: Kindergarten.
What you don’t see just by looking at him are things that have at times exhausted us as his parents, and consumed our daily lives. As his mother, I have broken apart and put back together more times than I can count. To watch him vacillate between “normal” little boy who knows his colors and numbers, can tell you why plants need rain or how bees make honey, and a kid who can’t figure out how to hold a crayon or walk down the street without straying off the sidewalk fills me with a feeling of hope and helplessness, worry and wonder.
His two-year-old sister glides past him on a scooter he hasn’t yet figured out how to ride. At the end of a busy day at school, he seems drunk. He falls off the couch, and is likely to trip on his feet at least once by the time he’s gotten upstairs to go to bed. He hasn’t slept through the night in two years, and consequently, neither have we.
We live on a constant roller coaster of emotions because we never know how affected by his dyspraxia he will be. It’s worse when he’s gaining new cognitive or language skills. During those developmental jumps, he will need to repeat the beginning few words of what he wants to say four or five times in a row before he can get a complete thought out and he’s super physical; barreling into me for a hug so hard that I fall over. Some of his potty-training skills regress and he appears to trip over nothing.
Thankfully, he comes out on the other side and we get to ride out a few really good weeks where he’s a joy to spend time with; we almost forget the giant elephant in our lives. During those really good weeks, I miss him when he’s at school and I look forward to the weekend when we can play hide-and-seek in the yard, dig in the sandbox, and watch the blue-jays at our bird feeder together. He and I love that bird feeder.
I would suspect that parenting a child with dyspraxia is in many ways similar to parenting any child with special needs. It has forced my husband and me to reframe our visions of who we imagined our sweet boy would be and accept that “normal” is just an empty word that looks different for every family.
Package that with a global pandemic and the highlight reels of perfect parenting and happy children by your friends and colleagues on social media and it’s not exactly been an inclusive experience — it’s actually been very isolating. I’ve tried not to let it get the best of me but I’m human too, after all.
My love for him knows no boundaries. It’s so easy to adore him and his little dyspraxic quirks. However, it’s also so easy to forget that he’s not intentionally walking into the house and taking only one shoe off, and he’s not trying to spill his cup of water all over the counter day after day. His body seems to be five steps ahead of his brain or vice versa, but they rarely speak to each other in tandem.
Parenting is hard to begin with. Parenting a child with dyspraxia has tested our patience, our resilience, and our mental health. For some couples, this kind of thing can fracture or break a marriage. Ours has been strengthened by all that we’ve been through together, but it’s not lost on me that we are the lucky ones.
Blake has been working with a wonderful Occupational Therapist twice a week for almost a year and we have seen a huge improvement in his emotional regulation, the way he approaches play when he has to use his motor skills, and more importantly, in his self-confidence. Humor is his compensatory strategy, and it keeps us laughing with him daily.
For the first time in over two years, I willingly took him to the grocery store by myself after school this past Friday, and it was without incident. To a family with only neurotypical children, it may not seem like anything special. For us, this is huge progress. In contrast, while helping him get dressed this morning, I also took an elbow to the eye seemingly out of nowhere. In my house, we’ve learned to take it one day at a time and just put one foot in front of the other — if we don’t trip on it first.