The Boland gene: A lively story of growing up, discovering DCD and the CO-OP Approach

Narrative Written by Canadian Parent Jenise, One of the Presenters at the DCD 14 Conference in Vancouver, 2022

Jenise and the Boland Gene

I grew up in Northern Ontario as one of four children raised by a hardworking, widowed mom. Finances were tight, and as a result, there wasn't much opportunity for extras like after school sports. Truth be told, that was fine by us. Because out of the four Boland children, not one of us could catch, run, hit a ball, or slide into base. Plus, Physical Education (PE) was free in school and growing up in the North, believe it or not, skating lessons and skiing were part of our curriculum. Not that we enjoyed it much, because our Boland ankles bent over in the skates, two of us kids popped knees while skiing downhill and one, and I'm not saying who, got tangled up in the tow rope dragged up the side of the mountain feet first before she'd ever put a ski onto a slope (ok, that one was me).

No, sports simply weren’t something we did, or believed Bolands were capable of doing, as we had what my mother lovingly referred to as the "Boland Gene".

Jenise’s Son Growing Up 

When my son was born in 2009, he began to show developmental delays - not making eye contact, later to speak and, when he finally decided to talk, it was in full in sentences. I knew he wasn’t like the other babies. There were other things, too, an odd grip on the bottle, a curious commando style crawl, but of course I just chalked those physical delays up to him being a Boland and inheriting that Boland Gene. 

By his second birthday, I was in the process of having an autism assessment conducted. As a teacher with many Autism Spectrum Disorder (ASD) students, I was not surprised in the least when it came back with a diagnosis of Pervasive Developmental Delay Not Otherwise Specified (PDD NOS) within the autism spectrum. When, along the testing route, my son demonstrated a lack of motor skills, it was noted, but not considered an area for immediate intervention. It didn't really occur to me that there could be something else that made it hard for him to climb the ladder to the slide or grip onto the swing. After all, he had those Boland genes.

Like my mother before me, I was determined to raise a confident and capable young human regardless of the challenges he faced. We began an intensive 10-hours a week of behaviour intervention (BI), there was play therapy, and adaptive swimming lessons. Autism funding provided by the provincial government is an incredible asset, but it is finite. Thankfully, I had some health benefits through work. I had to make choices about where to spend those funds, which therapies would be most effective. The research and the advice at the time said to focus on his intellectual and emotional development. So, like my mother before me, I left the physical development to his PE class.

Adaptations and A New Mantra

When he was four years old, we were visiting with my mom and at that stage my son very much wanted to be his own person, but the day-to-day tasks always needed help. Everything took longer. Getting dressed, putting on shoes, going to the bathroom. And so, supportive mom that I am, I was always there to lend a hand or shoulder to hasten it along.

One morning my mom stared incredulously at me, as I helped my son put on his pants. He held onto my shoulders to balance himself while I crouched down. And then carefully I helped bend one of his legs as he balanced on one foot, trying to put it in one leg at a time. After about four minutes of this pant performance, my mother, exasperated, said, “Jenise, I don't care if he's four years old, or 400. It doesn't matter to me if he doesn't have any legs, but that child is going to learn to put on his pants by himself. Right now.”

She then walked over to him, sat him down on his bottom, put the pants on the floor, his hand on either side. Told him to stick his legs in and pull them up.

“He's never going to do it like everybody else,” said my mom. “But he's gonna have to do it.”

So that that became my mantra.

He couldn't do it like everybody else.

But he was going to have to do it.

So find another way.

Now, at this point, you would think a bell would ring for me – that something might click that there might be more than just autism at play. But the words ‘developmental coordination disorder’ (DCD) had never been mentioned. Not by a doctor or a therapist or a teacher. I didn’t come across the term in my research – and I did a lot of research – and while Occupational Therapy (OT) was sometimes suggested as an option it was never clear how this would work in conjunction with his other therapies. So. Where did that leave us? With trying to come up with alternatives and adaptations:

• Rather than buying shoes with laces, we bought slip-ons.

• Rather than buying pants with a zipper, I bought elasticised pants. T-shirts and pullovers only, no button front shirts.

When he attended school, there was a uniform requirement. Every child had to wear pants and a belt.

Unfortunately, my son would struggle with the belt and would often either leave it off or set the belt so loose that he'd be able to slide his pants up and down to go to the bathroom rather than taking the belt off or undoing the buckle.

The problem with this, of course, was that the pants were often so loose they would slide down and you would see at best his underwear and at worst.... Well you can imagine.

Finally, his principal took me aside and said, "Jenise, I have seen more of that child's bottom than I ever care to see. 

"I'm giving you special dispensation for him to wear suspenders." It was another adaptation that made his life that much easier. And ensured that even though he didn't do it like everybody else, he still did it.

Insights on DCD and Interventions 

And, throughout this whole time we were engaging in various intervention therapies for our son. 

• This included adaptive snowboarding, adaptive sailing, and behavior intervention. 

Much was covered by the autism funding, for which I am eternally grateful, and my own work benefits stretched to cover more. And again, much of it was focussed on the behaviour and social strategies, to help him ‘fit in’ so to speak, and function within a school setting and in the classroom during his lessons.

 What I didn’t know, what my son didn’t want me or anyone to know, was that classroom behaviours weren’t the thing he cared most about. In his eyes, that wasn’t what was stopping him from being more like ‘a regular kid’. It wasn't the classroom where he felt uncomfortable - it was in gym and at recess.

 For example, he had never played rounders at recess with the other kids, because he couldn’t climb well or fast enough. He had never hung from a monkey bar. In PE, if the game was basketball, or volleyball, or T-ball, or soccer, or tennis, or badminton - never anything on individual health, always team sport - he would wait his turn patiently as BI had taught him to do. Then, he would take hold of the ball or the racket or the bat and aim swing and miss. 

 

Sometimes he was met with “good try!"  "Well done," or "you'll get it next time” from well meaning friends or teachers. But he knew he was never going to get it in next time.

When it came time to eat with his friends, it was always a sandwich, a burger, chicken fingers or pizza. I assumed this was because of the limited palate so many kids with autism have. I only learned later it was because he didn’t want anyone to see how he held his fork or couldn’t cut with a knife.

He tore through the backs of endless pairs of sneakers because he would ask a trusted adult to double knot them, and then he would figure out a way to stretch them so he could pull them on and off rather than let any of his classmates know he couldn’t tie his shoes.

This all came to light one day at physiotherapy when he met with a brilliant new therapist who started asking some targeted questions, and then suggested that he be assessed for DCD. I was skeptical. I had never heard of it. And by this point, he already had an alphabet of diagnosis PDD NOS, ASD and Attention Deficit Disorder (ADD). I was, to be honest, a little hesitant to add three more letters to the list.

But, if it might help him in some way, I knew we'd have to do it.

 It turns out, there was more at play than just a natural clumsiness or ‘the Boland gene.’ It was a condition wherein his brain and his body weren't having the same conversation. And all of those years of adaptations and alternatives, of finding another way, although well intentioned, had actually made it harder for him. That if the intervention had started earlier, as early as his behaviour intervention, his life experiences would have been very different.

 Right at the time of the diagnosis came the opportunity to take part in the DCD study at University of British Columbia (UBC) that worked with children who were both ASD and DCD. We were new to understanding what DCD is, what it meant, and what could be done, and the study offered us an opportunity to not only learn more, but also to see what interventions could be done. 

At this point, he was 12 years old. He had 10 weeks of co-op sessions with an OT and nightly homework.

At the beginning of those 10 weeks, he couldn’t cut comfortably with a knife and fork.

He couldn't tie his shoes.

He typed very slowly on his keyboard. (Although, as a caveat, he's incredibly fast on his Nintendo Switch so there might be something else at play here.)

He was a 12-year-old boy who couldn't do the things everyone else could do, so he had found other ways.

By the end of those 10 weeks with the weekly sessions with an OT and nightly homework, plus practice with his parents, he was able to do a double bunny knot. He could write his homework without a scribe. He could slice into a steak.

Imagining a Different Future

For 10 years I've been providing adaptations, alterations, accommodations but in just 10 weeks the OT team found the root of the problem, found a way to re-educate the mind and the body in a way that his loving and well-intentioned mother just simply didn't have the knowledge to do or the information to access it. If only those 10 weeks had been when he was 2 and not 12. What a difference it might have made.  

As the study ended and his abilities grew, we had another stroke of tremendous luck. His school began to bring in an OT to work with several students with visible physical disabilities in place of their PE class. Once the UBC study was complete, we was asked if our son could join these adaptive PE classes and carry-on weekly OT sessions in PE, thus reinforcing the skills he had learned and building on them to master other tasks that seem simple to others but for him have always been a struggle. The school agreed.

I can't help but wonder how different his elementary years would have been if I had known that DCD and ASD so frequently occur concurrently. I can't help but wonder about me and my three siblings, all of us now in the process of being assessed as adults for DCD. And I wonder how many children out there get dressed secretly in the change room because they don't want anyone to see the struggle that they have to put on a shirt or their socks or their shoes. How many kids choose the finger food or skip the meal, because they don’t want anyone to see how they hold a fork? And I also can’t help but wonder if this, too, should be considered when we talk about the importance of intervention during those critical first five years of development for ASD children, as well as ECE in the early years classroom.

And, having had the opportunity to bring in OT to his PE classes at school I can’t help but wonder if DCD awareness and education should be part of teacher training programs and included in a child’s Individualized Education Plan? With great respect for my teaching peers who teach PE, my experience as parent has been that too often PE is not physical education at all - it is not a teaching to the physicality of the body - but sport education, and a very specific kind of sport. This month it’s basketball, next month it’s badminton, after that it is volleyball. All involving skills a child with DCD will always struggle to master. We make specialized plans to support the learning of children with ASD and learning differences, but as yet, even with a DCD medical diagnosis, for most of his education the options for our son during PE were only exemption from class due to ASD, or to endure it knowing he was never going to meet the criteria set out in the provincial curriculum. 

My experience as a parent through this journey is one of guilt and frustration with myself for not looking harder for streams of support, for not knowing about DCD or even that my child has it. So today I am an advocate. In my role as education researcher and instructor of pre-service teachers, I advocate for more new teachers in the profession to be aware of this unseen disability. I have learned the incredible impact that OT has for an individual with a DCD diagnosis. I'm determined to support the research and, when given the opportunity, I talk and teach about it. I believe DCD testing ought to be conducted concurrent to ASD in young children so that intervention can take place during the critical early years, and I want to see more education for teachers and options for students across the curriculum, but particularly in physical education, that allows for adaptations for DCD the same way we do for learning differences and ASD.

My son is 13 now. He starts high school in September.

To date he has still never swung from a monkey bar.

He cannot do a push up

Tennis and baseball and basketball and volleyball are still out of the question, but we know now, that with the right intervention, it is no longer out of the realm of possibility.