by Yvonne Blomer
Source: Island Parent Magazine
Originally Published: October 2019
We are a month back into the school year and perhaps already used to early mornings and packing lunches. New kids and new teachers are getting used to my atypical, neurodiverse, different, unusual, quirky, non-verbal, highly sensitive, curious, funny (as in ha ha and strange) goof ball of a special kid.
According to the National Symposium on Neurodiversity, “neurological differences are to be recognized and respected as any other human variation.” So this means that Autism and ADHD or Tourette Syndrome and also Prader-Willi Syndrome create diverse individuals who vary from the norm, but are still within human variation. People who are neurodiverse, in other words, are not weird, though they may be rare.
My son, Colwyn, is neurodiverse. He has a dual diagnosis of Autism Spectrum Disorder and Prader-Willi Syndrome(PWS). He’s also just a kid. He is quirky, like we all are. He has interests and passions. He can be fickle, and he can be steadfast.
The list of behaviours or characteristics of Autism and PWS are useful tools, but they do not define Colwyn. For those who teach him, or are in class with him, it’s important not to make assumptions based on labels or even behaviours, but look at and listen to the kid who is standing before them.
Colwyn is good at teaching people to be open and accepting. He loves it when people get him right away especially if he can show off his goofy sense of humour and be truly accepted.
So here are a few reminders to help us work toward being open and easy with nuerodiverse kids:
1. Slow down and listen. Colwyn does speak but he is quiet, he often whispers, and he only speaks part of the word. He also signs and uses an iPad to communicate as well as his whole self: eyes, hands, smile. If you meet a kid who is quiet, try to stop and listen; slow down a little, give them time to say what they want to say. When someone takes the time to understand him, he’s so elated he literally skips down the street.
2. Remember that processing speeds are different, so avoid repeating instructions and wait. By repeating “Please go and get your iPad from the living room,” I reset Colwyn’s processing and so we wait longer while he decodes the request.
3. Allow for more time. A friend, Noelle Allen, recounts a time when she told her son Samuel, who has Down Syndrome, to be “Quick as a bunny,” when getting ready for school and he responded, “No, slow like a snail.” Not only is Samuel letting his mom know his preference, he’s using his sense of humour to make his point.
4. Recognize the unique needs of neurodiverse kids. Just as cyclists benefit from bike lanes because they create a unique and designated space for the cyclist, so too do neurodiverse kids benefit from special programs and adaptations to accommodate their needs and lifestyles. The school system, teachers and helpers, classmates, people at parks and in stores now recognize that Colwyn is different. Most guess Autism. This recognition is great, because most people know how to adjust their behaviour, rather than expect Colwyn to. Beyond recognition we also need to provide access and support to the environments in which neurodiverse people learn, work, and live.
5. Recognition is an important step. We also must implement changes. To return to my bike lane metaphor, the increase in cycling traffic in areas with bike lanes can improve the lives of city and street users. Lorne Daniel, founder of Greater Victoria Placemaking Network says, when speaking of city infrastructure that, “Streets with protected bike lanes, wide sidewalks, mid-block street crossings and such are more inclusive and create a more equitable street.” His view of city planning can work as a metaphor for how to be equitable and inclusive of neurodiverse people.
Curb cuts are another example. A curb cut is a wedge cut out of the elevated curb to allow smooth passage to the street. It was meant to benefit people in wheelchairs but helps people who are visually impaired, carrying heavy bags, pushing strollers or walkers, people who are drunk, movers and delivery people. It’s important to allow for more equitable access at every level of society—from shopping (Thrifty Foods now offers sensory friendly shopping days); to schools (SD61 has protected the special ed program at Arbutus Middle School), and movie theatres (some now offer sensory friendly screenings). The hope is we will continue to move forward in creating a liveable world for all diversities including my dancing, stomping, skipping, neurodiverse kiddo.
6. My last major tip is to see the person and let them be who they are. I fall into the mom trap of taking everything too seriously and letting every little anxious screech feel like the end of the world. The more seriously I take everything, the more serious it becomes. The more I laugh, and dance, and teach my son to accept himself, the happier and more relaxed we all are. If someone is a bit surprised or uncomfortable when Colwyn is too close, I say something like, “Hi, this is Colwyn. He’s interested in your…moustache, bald head, dog, leash, curly hair, face…etc.”
At the dentist recently Cowlyn wore sunglasses, had Van Morrison on the iPad, held his own tiny mirror and entertained his hygienist. I heard a few quiet “a booos” come from his cubical, as well as lots of laughter, goofy gasps, a relatively quiet howl and the repetition of the name Angus. When the dentist came to see him, I joined Colwyn and his dad and after we talked about his teeth, he gave his dentist an epic high five and with the tiny mirror gripped in Colwyn’s hand, the dentist had a look. The appointment ended with Colwyn wearing the dentist’s magnifying specs to look at his hands, followed by him visiting all the other cubicles. At worst, we are disruptive and silly. At best, Colwyn makes people laugh, gets his teeth cleaned and builds on existing relationships.
Most days I’m living in the moment with Colwyn whose favourite song, activity, or person is always the song, activity or person right in front of him. He keeps us grounded in the present. Big shifts like the start of school rattle my nerves but Colwyn soothes them with his delight. Sure, he struggles a lot and must work hard for every milestone and that will likely never change, but his struggles are eased by good people, supportive spaces and his awesome attitude.
Yvonne Blomer is a Victoria writer and the past Poet Laureate of Victoria. Her most recent books are Sugar Ride: Cycling from Hanoi to Kuala Lumpur and Refugium: Poems for the Pacific.
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