CANADA’S AUTISM-FRIENDLY TOWN

Reader's Digest (Canada) - - Front Page - BY VA­LERIE HOWES FROM TO­DAY’S PAR­ENT IL­LUS­TRA­TION BY PETE RYAN

IN MANY WAYS, Chan­nel-Port aux Basques is a typ­i­cal New­found­land town. It’s a place where pass­ing strangers say hello and where driv­ers slow down and smile so pedes­tri­ans can jay­walk at their leisure. New­found­lan­ders are known for be­ing friendly, but the peo­ple of Chan­nel-Port aux Basques have taken hu­man kind­ness to a whole new level.

Over six years, the town has gone from hav­ing zero lo­cal re­sources for kids with autism spec­trum dis­or­der (ASD) to be­com­ing Canada’s first autism-friendly town. In the sum­mer of 2017, then-mayor Todd Strick­land even made it of­fi­cial with a dec­la­ra­tion sign­ing at the town hall.

And it all be­gan with two lo­cal women who cared, and wouldn’t take no for an an­swer.

THE HU­MAN BRAIN takes in in­for­ma­tion about the world through all the senses and fil­ters it as re­quired. But imag­ine if all the in­for­ma­tion you took in from a sim­ple walk down the street was com­ing at you all at once, as it does for a child with ASD. The noise of pass­ing cars, chirp­ing birds and peo­ple talk­ing would be like hav­ing three ra­dios tuned to dif­fer­ent sta­tions at once, turned up so loudly that all you’d want to do is hold your hands over your ears. If you’re non­ver­bal and not able to tell any­body what you need or how you feel, you might even want to rock or scream or bang your head.

Autism is a de­vel­op­men­tal dis­or­der on a spec­trum, and ev­ery per­son liv­ing with it has a unique pat­tern and sever­ity of symp­toms. Some kids with autism can prac­ti­cally blend in with class­mates in a reg­u­lar school, while oth­ers will need care­givers to look after them into their adult lives.

It’s some­times chal­leng­ing for the par­ents of kids with ASD, too: all they want is for their chil­dren to feel ac­cepted and be happy. Amaz­ingly, through a grass­roots ini­tia­tive that has cap­tured the imag­i­na­tion of the whole town, Chan­nel-Port aux Basques has be­come a place where that’s not only pos­si­ble but also nor­mal.

Of the 300 kids in the town’s ele­men­tary school, 14 have been di­ag­nosed with ASD. The Pub­lic Health Agency of Canada es­ti­mates that ASD af­fects one in 66 chil­dren be­tween the ages of five and 17 in Canada, but num­bers are most preva­lent in New­found­land, at one in 57 chil­dren. As yet, no­body knows why.

Chan­nel-Port aux Basques, a town of 3,665, is the gate­way to New­found­land and Labrador from main­land Canada—a seven-hour sail from Cape Bre­ton Is­land. Up un­til 2013, par­ents of kids with ASD felt in­cred­i­bly iso­lated. If you wanted to join a sup­port group or ac­cess ba­sic re­sources for your child, it was a two-and-a-half-hour drive to the near­est city, Cor­ner Brook.

But that all changed just months after April Bil­lard’s son, Wil­liam, was

di­ag­nosed with ASD in 2010. Bil­lard grew up in Isle aux Morts, a 15-minute drive from Chan­nel-Port aux Basques, where she now lives with her hus­band and two kids, Wil­liam, 11, and Gina, 7, who also has autism.

Bil­lard vividly re­mem­bers the mo­ment Wil­liam was di­ag­nosed. Even though he was the same child she knew and loved, ev­ery­thing sud­denly seemed dif­fer­ent. In­stinc­tively, she’d known a di­ag­no­sis was com­ing be­cause of his speech de­lays, lack of eye con­tact and fussi­ness when touched. Still, she didn’t know much about ASD. Des­per­ate for guid­ance, she turned to Joan Chais­son, a spe­cial-ed­u­ca­tion teacher who had re­tired a cou­ple years be­fore.

After 30 years of ser­vice, not work­ing had been a hard ad­just­ment for Chais­son, then 54, and she was toy­ing with the idea of set­ting up a con­sul­tancy busi­ness for par­ents. She even­tu­ally re­al­ized, how­ever, that the ser­vice would be un­sus­tain­able in a small town with lim­ited re­sources, and she didn’t es­pe­cially want to ask for money from peo­ple whose lives had been turned up­side down by a di­ag­no­sis. “I couldn’t walk past your house two or three times a day and know you have a child in there who needs help,” she told the Bil­lards. “I’ll do it.”

ONCE WIL­LIAM’S home-ther­apy be­gan in 2011, Bil­lard and Chais­son be­came fast friends. A year later, after vent­ing to­gether about the dire sit­u­a­tion for lo­cal fam­i­lies deal­ing with chil­dren with ASD, they de­cided to take mat­ters into their own hands. They re­solved to make Chan­nel-Port aux Basques into the town they

IN 2012, THE SIT­U­A­TION FOR LO­CAL FAM­I­LIES

DEAL­ING WITH CHIL­DREN WITH AUTISM SPEC­TRUM DIS­OR­DER WAS DIRE.

dreamed of liv­ing in—one where par­ents felt sup­ported and kids with ASD could par­tic­i­pate in life to the fullest.

To­gether, they co-founded Autism In­volves Me (AIM) in Jan­uary 2013, which started out as a par­ents’ sup­port group with only four mem­bers. They would talk about chal­lenges and get their kids to­gether to play in a fam­ily room filled with sen­sory toys. They built a li­brary of spe­cial­ized par­ent­ing books and re­sources and started think­ing about what else they could do to make life richer for their kids out­side of that safe bub­ble.

AIM’s vi­sion was to have autism ser­vices and sup­port in­te­grated into the fab­ric of its mem­bers’ home­town, rather than siloed as spe­cial-needs of­fer­ings. “It’s not that the town wouldn’t do it be­fore,” says Chais­son, ex­plain­ing that it just took a bit of or­ga­ni­za­tion to bring about what was al­ways pos­si­ble.

Since work­ing with Wil­liam, Chais­son has moved on to as­sist sev­eral lo­cal kids who have ASD, in­clud­ing help­ing them re­hearse life skills out in the com­mu­nity. As she did with Wil­liam, she breaks down each ac­tiv­ity (such as go­ing to the post of­fice or or­der­ing at a res­tau­rant) into steps. But be­fore she does that, she goes into a busi­ness to tell staff about the child she is bring­ing in, in­clud­ing their abil­i­ties, chal­lenges and spe­cific goal for the day.

For in­stance, if a child is strug­gling with go­ing to loud restau­rants, Chais­son might en­cour­age them to just walk through the door so they can see what it looks like. She’ll drop off cue cards to the staff so they can ask the child sim­ple ques­tions they can un­der­stand. She might also share a few de­tails about a child’s big­gest pas­sion (such as di­nosaurs and trains) so the server can throw in a ques­tion about that to help them feel com­fort­able and de­velop their so­cial skills.

The next step is to get the child to sit in a booth with­out want­ing to make a dash for the door. When that feels com­fort­able, the child will or­der from the menu, just as they prac­tised in run-throughs with Chais­son at home.

Chais­son has a way of mak­ing peo­ple feel in­spired and ex­cited about the small changes they can im­ple­ment to

WHAT SUPRISED CHAIS­SON AND BIL­LARD MOST WAS HOW LO­CAL PEO­PLE WITH­OUT

KIDS ON THE SPEC­TRUM WANTED TO HELP.

ac­com­mo­date and wel­come fam­i­lies af­fected by autism. And her out­ings have had a rip­ple ef­fect: within months, AIM evolved from a low-key sup­port group into an ac­tive move­ment with 67 mem­bers.

What sur­prised the founders most was how lo­cal peo­ple who didn’t even have kids on the spec­trum wanted to lend their sup­port.

IT’S LATE AU­GUST 2017 when Chais­son drops into the only bar­ber­shop in Chan­nel-Port aux Basques with Elyas, an 11-year-old she is coach­ing. Bar­ber

Edgar Allen re­calls the first time he cut the boy’s curls three years ago. “When I say he needed a hair­cut, I mean he needed a hair­cut,” he says.

On Elyas’s first visit, Allen had to fol­low him around the bar­ber­shop for a good hour to coax the ner­vous child to sub­mit to the clip­pers. But three years after that first cut, Elyas trusts Allen. The bar­ber speaks in a sooth­ing voice. And as Chais­son rec­om­mended, he al­ways shows kids with autism the in­stru­ment he is about to use and guides them through the next step so the vi­bra­tion of clip­pers or the sen­sa­tion of gel on the scalp won’t shock a child with sen­sory sen­si­tiv­i­ties.

On this visit, after only 20 min­utes in the chair, Elyas is gig­gling as Allen blows stray clip­pings off his neck with a con­verted vac­uum. “You see how calm he is now?” says Allen, as he of­fers the boy a lol­lipop for each hand.

What Allen does in his bar­ber­shop isn’t ground­break­ing, but lit­tle changes can make a huge dif­fer­ence for kids with ASD. As Bil­lard says, “When you’re the mom of a child with autism, it’s just so easy to think that no­body will ever have your back. But when you have peo­ple in your com­mu­nity who are will­ing to learn, it means a lot.”

IN ANY COASTAL TOWN, where life re­volves around boats and beaches, ev­ery child should learn how to swim. For kids with ASD, it’s vi­tal. “Chil­dren who are on the autism spec­trum are drawn to wa­ter,” says Wanda Mer­ri­gan, the fa­cil­ity man­ager at the Bruce II Sports Cen­tre. A re­cent re­port from Columbia Univer­sity states that Amer­i­cans with ASD have a sub­stan­tially

IN ANY COASTAL TOWN, EV­ERY CHILD

SHOULD LEARN HOW TO SWIM. FOR KIDS WITH ASD, IT’S VI­TAL.

height­ened risk for death from in­jury, with drown­ing among the top causes.

Un­for­tu­nately, for chil­dren with ASD, group swim­ming lessons can feel like an as­sault on the senses—voices bounc­ing off con­crete walls, get­ting splashed by sur­prise and the screech of blow­ing whis­tles. After Chais­son and the AIM group came to chat with the Sports Cen­tre’s team about how they could do things dif­fer­ently, they de­cided to of­fer one-on-one classes for kids on the spec­trum. Mer­ri­gan hand­picked three swim­ming in­struc­tors she knew would be pa­tient and flex­i­ble.

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