islandparent Parenting Special Needs Neurodiverse Kids & Anxiety

Neurodiverse Kids & Anxiety

With our first Spring Break—à la Covid-19—I remember a lot of pacing.

Our niece had to cancel a visit, school didn’t restart, the playgrounds shut down. Each change created anxiety in Colwyn, my teenaged son with the dual diagnosis of Autism Spectrum Disorder and Prader-Willy Syndrome that manifested in skin picking, and nail pulling. But we were together and we nested big time. Colwyn began speaking more so he could really let us know how he felt. Now three years in, we are facing Spring Break with big hope.

Constant change does not make us better adapted to it; this is my number one lesson.

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Years ago, Colwyn’s dad Rupert and I cycled for over three months in Southeast Asia. We loved it, it was amazing, but it was also exhausting. We had to manage long rides, daily changes, new things, new people, new languages, new bike problems all while also getting along. We did this by choice (of course), it was awesome and yet: anxiety. We experienced homesickness, that deep longing for the familiar which many of us, though we may be sick of our homes, are experiencing. We are longing for that time when we could hug a friend or attend an event. My son longs to see people and to join the neurotypical kids at school.

Anxiety reaches us all. For any kids, “behaviours” can also be signs of medical-related issues. There could be a septic tooth, an ingrown toenail that is getting worse, or undetected ear infection your kid doesn’t know how to tell you about. It is always good to do the things we do to reduce anxiety, but it is also important to check if behaviours are a sign of illness with a visit the doctor or pediatrician.

In December while we were visiting my dad in Nanaimo, the snow threw a curve in our plans. Though Colwyn loves being at his papa’s house, he was only prepared to be there for just two sleeps. Then we got snowed in. The problem for Colwyn isn’t so much the change—well yes, it is—but it is also the loss of control over what is going to happen next. Even though we went home the next day, Colwyn was still anxious. He moved to the next worry, and we entered a series of countdowns. Number of sleeps to school, number of sleeps until we’d go back to Nanaimo, number of sleeps until we’d visit with a friend on Zoom. I am relieved when one worry is resolved, but then he finds the next thing to worry over.

So…what to do?

1. Write down the day’s plan.

Colwyn has a homemade booklet where each day we write the schedule: 1. get up. 2 make breakfast. 3. get dressed. 4. eat…etcetera. Colwyn then can cross things out as we go and can see that we are following the plan. This is especially helpful on weekends when the days are looser. For school, I write the first few, and his EA and he do the rest of the day together. Once he’s settled back in, we don’t need it, but I will reinstate it right away when Spring Break begins.

2. Go for daily walks.

This helps a lot, for me too as I get quite stressed by his intensity and repetition. A lot of PWS experts say we should limit the number of times he’s allowed to repeat, but I haven’t quite found the perfect way. Usually, we get him to make a full sentence and repeat that. So, instead of “Papa’s house” over and over he says, “I want to go to Papa’s house, but we are going in 16 sleeps.” It works, but then sometimes it doesn’t. My husband Rupert asks, “Are you doing that to bug mom?” and Colwyn always says yes, so my job then is to try not to be driven crazy by it. Sometimes, to give us both a break, we take Mom away.

3. Music or a movie.

Music is nearly guaranteed to give Colwyn a chance to stop being anxious, a movie can do the same. A car ride and music are the perfect combo as he sits back in the car and sinks into the music.

4. Have a plan and do your best to stick with it.

For my kid, Christmas and Spring Breaks are a bit long. Even if we do a lot of fun things, keep busy, see friends and spend time outdoors, Colwyn’s anxiety begins to go up. Camps help thanks to their familiarity, peers, and routines.

5. Keep talking about it.

Colwyn might not add a lot to a conversation, but I find the more we chat, and talk about how things might change the better. If we add this to him making a full sentence about the planned thing he begins to relax.

Each time Colwyn’s anxiety comes up hard, the smiling happy kid disappears behind glazed eyes and worry. Each time he comes back again, we celebrate. Even though we don’t always succeed, we try to keep things light, stimulating and fun.

Yvonne Blomer
Yvonne Blomerhttp://yvonneblomer.com/
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. yvonneblomer.com.