My family and friends have made adjustments over the years to ensure my son Colwyn is safe and supported; we have some strange routines in our house. Now with my niece Jasmine living with our family this fall while she attends school, I have started to wonder about families with typical and diverse kids who may have quite different needs and ways of being.
First, let me introduce Colwyn. He’s a 15-year-old who was born with a rare genetic syndrome called Prader-Willi (PWS) and was diagnosed with autism spectrum disorder when he was in preschool. He has become more and more verbal the last few years but is quiet and uses an iPad to augment his communication. One of the biggest risks with PWS is hyperphagia or an insatiable appetite. Colwyn is more food-focused than typical kids, but he is at lower risk for food stealing compared to many children with PWS. Nonetheless, we have a rigorous eating schedule and watch his calories closely.
Colwyn put another way, we number the events of the day: 1) cuddles, 2) books in bed, 3) make breakfast. There may be some foot stomping thrown in due to frustration or dropping something, some yelling perhaps. All good, take a deep breath. Then 4) get dressed (how will Jasmine feel with Colwyn in his undies at this point?), 5) eat, wash hands, then iPad time. Relax for a moment while I pack his school bag (he should do that himself) and Colwyn takes a break. More foot stomping. Toileting. Yelling out “make bread, make bread” negotiate that for after school, and off he goes on the special ed bus. After school, home again for relaxing time, go out with a helper, or piano or Teen Community Connects, play music, maybe only the beginnings of songs, foot stomping, walk the dog, eat dinner, sing out sing out, exercises. Shower. Bed.
The truth is, to Colwyn’s six cousins, he’s just Colwyn. The above routine is totally normal to them. They were all too little to know he was different when he was born, and they’ve all grown up with his differences, so most of our routines are normal. The first thing my sister-in-law Angela Stott said when I asked about adjustments was, “Plated dinners, following the rules of waiting until everyone is ready to eat before starting, and small plates for dinner.”
It’s true, we no longer put serving plates of food on the table, nor does anyone else we know when we are around. Everyone gets a plate of food, often a small one. We are okay with second servings, but we release Colwyn from the table as soon as he’s finished. We also encourage him to wait until everyone is seated and ready to begin before eating—he eats fast. So, Angela expected the same from her kids when they were here. After her initial response, she added, “They (cousins Ben and Jasmine) totally don’t remember life without Colwyn.”
Mandy Young is the mom of two kids, her daughter Sophie also has PWS, and her son Cooper is typical. At 10, Sophie’s hyperphagia or hunger is much more typical of PWS than Colwyn’s, so their kitchen is locked, as is their bathroom vanity. Sophie will eat toothpaste if she can get to it.
Let me just clarify what a driving force hunger is for kids with PWS. They cannot help it. This hunger drive is one of the most difficult things for the uninitiated to understand. At eight, Mandy’s son Cooper has become a picky eater, and is not very independent with food prep, making his own snacks or even helping himself to a glass of milk. He needs a parent to let him into the kitchen. On the other hand, where Sophie has little freedom in where she can go, Cooper spends a lot of his time visiting friends and families in the townhouse complex they live.
“Cooper goes outside to find someone else to help him or to play with if we are consumed with Sophie. Everyone knows everyone and looks out for each other. He knows, if he wants to get out of the house, he can just go,” says Mandy, adding that they are working on independence for Sophie, but she recently broke into a house and stole food.
Sophie goes to respite two nights a week, and this allows Mandy and her husband to pay more attention to Cooper, give him some chances in the kitchen to prepare food, and do what he wants to do.
“He will often say, ‘why does she get to choose what we are doing,’” says Mandy, “but she’s the trickier kid, and so sometimes her way rules.”
We are similar in our house, once something is in Colwyn’s head, it is hard to change his mind. We pick our battles.
Children with special needs often have anxiety and aggression due to changes in routine that need accommodating in their families. Sometimes Cooper pushes Sophie’s buttons, so Mandy keeps the kids apart when they are getting ready to go out, so they actually can go out. Colwyn is an only child, but we’ve had friends rearrange their social schedules because he thought they were coming for a visit.
Angela noted that she and her partner, Jason, are already structured parents, so many of the small modifications went unnoticed by their kids, such as being ready to leave a place if he needed to go. For a while Colwyn always had to wear headphones in public places, no comment from the kids. He wore a Band-Aid on his nose, no comment. She said, “Think about playgrounds and patience and flipping books and dancing to the same song, no comment. The kids were fine.” I recall his stack of Robert Munsch books and his adamant refusal to let his cousins read with him, sometimes Ben would shrug and go find different books, sometimes he’d talk Colwyn into it, and they’d sit side by side and share.
There are a lot of things we do to support or make things smoother for Colwyn without even realizing it. Small things like putting his shoes out so he can easily get them on, or little constant reminders, or verbal cues. We have signs in our bathroom to remind him of the routines, and I think most who know us barely notice them anymore. Though we have these small visual reminders, I like Colwyn to come and check in with me, especially as he becomes more his own person, doing his own (rather teenaged) things, like watching YouTube or reading books in his room. I wonder how these day-to-day routines will be for Jasmine, especially around hygiene and toileting.
A key note on inclusion and neurodiversity is that often kids are quicker to understand the needs of their diverse peer than adults. I can remember Colwyn’s Grade 2 teacher wanting to do a food-based activity at school and we had a long discussion, that resulted in a pared-down party, with a sign-up sheet to limit how much food was brought. One of the kids, who’d known him since pre-school said, as she read it, “But that won’t be good for Colwyn.”
Cooper too can be more understanding of his diverse classmates because of his sister.
“If a kid is at a playground on their own, Cooper will approach and ask them to join,” says Mandy. “He is emotional and is starting to understand that other kids are like his sister, and then understanding her better too.”
Jasmine may find living with us an adjustment, but probably it will be less about Colwyn and our well-established neurodiverse routines, and more about her uncle’s terrible dad jokes.