Why Haven't We Heard of Dyspraxia?
Approximately six to 10 percent of people struggle with this neurological disorder that often affects motor skills, but very few know what it is—or how it affects kids.
When my son was seven years old, he wanted to learn how to ride a bike. Every afternoon, he convinced an adult to go outside and help him. Two hours later, when the adult on bike duty’s back was sore and stomach grumbling, that person would finally convince my son it was time to head inside for the evening. While he got the hang of riding the bike rather quickly, he struggled to start on his own, remain balanced when turning a corner, or stop and safely get off. It took about two months, but my son finally figured it out and was able to consistently start, pedal and stop his bike. He's now nine years old and takes great pride in riding his bike.
Why was this so challenging? It's because my son has dyspraxia, a neurological disorder that often affects motor skills. Approximately six to ten percent of the population has dyspraxia, but if you haven’t heard about it, you’re not alone. For a condition that can affect up to one out of every 10 people, it’s shocking that teachers have rarely heard of this condition and unable to provide sufficient classroom supports.
What Is Dyspraxia?
Dyspraxia is a condition where the neurons in the brain that control motor skills and sensations don't connect, sync and fire accurately. It's a relatively new term that was first discussed in the 1980s in the United Kingdom (where, along with Canada, most of the research into dyspraxia is conducted). Prior to that, it was called Clumsy Child Syndrome, which was a horrendous name and inaccurate description as dyspraxia can affect people’s lives well into adulthood.
"Dyspraxia is often called a hidden condition, and it's also very inconsistent," explains Warren Fried, president and founder of Dyspraxia USA. Fried and his five-year-old twins all have dyspraxia. "Dyspraxia doesn't look the same for everyone and there are a multitude of issues that go with it. Plus, there's no medication, and it can look like a number of other conditions.”
Children with dyspraxia don't typically look different, and they often struggle quietly because teachers, coaches and peers don't understand how difficult it is for them to accomplish "simple" tasks. People with dyspraxia could have any, or all, of the following symptoms:
- struggles with fine motor skills, like handwriting and using silverware
- struggles with gross motor skills, like kicking a ball and walking up or down stairs
- processing delays, such as remembering a list of verbal instructions
- little or no executive functioning skills, which can include the inability to organize or belongings or manage time
- inability to accurately judge people or situations and properly respond to social cues
- visual difficulties with depth and space
- poor memory
- sensory aversions or sensory seeking (looking for sensory stimulation, such as touch or sound)
- speech delays or inability to know when/how to use words appropriately
Everything From Crawling to Jumping Rope Can Be a Challenge.
At 10 months old, my son began working with a physical therapist. She taught him how to crawl, walk, run, skip, hop, jump, climb stairs, etc. because he was unable to develop any of these skills on his own. She came to our house twice a week until he turned 5. But it didn't fix everything.
"When someone with dyspraxia learns a new skill, like jumping rope, there are three distinct elements at play: the person, the activity and the environment," says occupational therapist Sally Payne, who has a Ph.D. focused on dyspraxia and is a trustee of The Dyspraxia Foundation in the U.K. "If they learn how to jump rope at home, they'll struggle when asked to do it at school because they must use another part of their brain to perform that skill in a new setting. Luckily, they should be able to master it more quickly, but they'll still need to practice in their new environment."
That motor planning difficulty would present itself again if you switched the jump rope for a hula hoop, as PE teachers like to do.
What Dyspraxia Looks Like in the Classroom
Last spring, during an annual meeting to discuss my son's educational accommodations, I listened to his teacher and various therapists inaccurately describe him as lazy, defiant, careless, and "not really available to learn."
But I pointed out what no one seemed to understand—his dyspraxia. My son is highly intelligent, but he significantly lacks motor skills and planning skills, so while he's fully capable of doing high-level math in his head, he can't easily communicate his thinking on paper. Plus, his processing speed is below average, so comprehending math word problems or organizing his thinking to write a paragraph are very challenging. And following verbal, multi-step instructions? Nearly impossible.
"[Kids with dyspraxia] have to put a lot more effort into organizing their movements," Payne explains. "They're using their cognitive capacity to sit squarely on their chair, grip the pen and move their hand in the right direction, so they don't have the brain space to think about the instructions and follow what's going on."
So when his teacher gives an assignment, my son typically remembers the first and last instruction given, but nothing in between. But because he's so smart, the teacher assumes he's ignoring her directions—she sees a defiant child instead of one with a disability who requires proper support.
Hidden Struggles Can Result in Visible Consequences
One of the biggest challenges of hidden conditions is getting others to understand and accept your disability. Parents, myself included, find themselves repeatedly explaining symptoms of dyspraxia to teachers, offering the teacher advice on how to support their child, and comforting their child when they feel defeated because their best wasn't good enough, and they were ridiculed for doing something “wrong” in front of the entire class. How adults, especially teachers, react to a child greatly impacts how their peers react. Unfortunately, bullying by teachers and students is common.
"These children need psychological support," Fried says. "As they get older, their processing and functioning delays become more obvious, and they may be made fun of or bullied, which impacts self-esteem."
I've spoken to numerous parents of children with dyspraxia, and the two comments I've heard repeatedly are "I wish people understood how hard my child works," and "My child is the kindest, most empathetic person I know." For my son, and for many others, both are true.
A person with dyspraxia must work ten times harder just to master basic tasks like buckling a seat belt or tying your shoes. And they do, because they don't want to be teased for being different. They'll keep at it until they've nailed it, and they bring that perseverance to everything they do.
Because they struggle daily, they empathize with others who face adversity. They know exactly how it feels to be picked on for being different, and they don't wish those feelings of embarrassment or helplessness upon anyone.
Let's Make Our Voices Heard.
It's estimated that six percent of the population have dyspraxia. By comparison, 1.85 percent of the population has been diagnosed with Autism and it’s estimated that 2.8 percent of the population have ADHD. But instead of discussing dyspraxia openly, many only speak about it behind closed doors. Whether they're embarrassed or don't want to draw further attention to themselves or their child, they're doing everyone a disservice.
Dyspraxia shouldn't be shrouded in secrecy. As celebrities like actors Daniel Radcliff and Cara Delevingne, singers Mel B., Cher and Florence Welch of 'Florence + The Machine', multi-billionaire Richard Branson, and chef Jamie Oliver publicly share their diagnosis and struggles with dyspraxia, we should too. Having dyspraxia isn't a future indicator of failure—it's a testament to a person's character and perseverance.
"Children with dyspraxia often have a great sense of humor, which really helps them get through this," says Payne. "I love spending time with them. They have a different view on the world, are excellent at problem-solving and have such extraordinary empathy. Why wouldn't you be proud to be dyspraxic?"