north shore news _ SUNDAY FOCUS Fighting te Martin Miflerchip News Reporter miller®nsnews.com HAYDEN Ewing climbs up the back of the sofa and gently bumps the back of my neck with his head. It's.a gentle touch, perhaps his wav of checking out the stranger in his home. Hayden has been a cimber for much of his tour vears: counter tops, windowsills, the top af the stove, the top of the fridge ~~ he'd chmbed them all before the age of two. He was without fear, On March 0, 1997, at the age of nwo years and five months Hayden tell through the screen of an open sccond-storey window while walking along the window sill. He tell 15 fece and landed head first on the concrete below, frac turing his skull in three places. When his parents found him he was comubing. The doctors at Children’s Hospital placed Hayden in an induced coma and offered no prognosis for fall recovery. Six: days later he came home. “It was the first tac he ever gave me a kiss and a hug,” says his mother, Aricene Ewing. Hayden is autistic. The accident forced Aricene and her husband Rob to fee the truth and seck the treatment their son needed. Arleene says Hayden seemed a typical child to the age of 18 months but then gradually began to change. He would line up his toy trucks and cars obsessively, categorizing them by colour. } Save a child fr N. Van parents look to private fundraising for son’s therapy By the age of tee he sall wasn’t speaking and was withdrawing trom his family. He screamed, he grabbed, fe showed no emotion. They thought he might be deaf. Arteene save she finally got acon sultation with a pediatrician, “Trwas Dee. 2, Pe remember ir clearly, (The doctor) suggested Hayden “might be mildly retarded” and *Ler's sce him again when he turns five” He and other in the medical profession never used the word autism but it was in the back of my head. Phad him in an Intint Development Prograny two mornings a week. All the other kids were quite visibly handicapped with things Tike Dow's svn drome and cerebral paly, Hayden looked pertectly normal. 1 would joke about ‘nny fittle autistic bow” After Hayden's fall Arlcene began to actively research the choic- es in autism treatment, despite the fact “they wouldn't give me the “A label.” She had already made contact with the B.C. branch of Families tor Early Auti satment of British Columbia (FEAST) when she and Rob saw an episode of David Suzuki's The Nature of Things that highlighted the work of Dr. Ivar Lovaas in California, The pro- gram gave the Ewings nwo things: an insight into Hayden's world and, in Arleene’s words, documented proof that there was a treat ment out there that offered hope. NEWS graphic Norisa Anderson Checking for autistic signs OBSERVATION of a child’s behavior rather than the child physical appearance is the key to detecting autism. The following are some of the early signs of autism (not al! appear in every autistic child): M@ The child rarely tries to share enjoyment with oth- ers, Often he uses an adult’s hand to point to some- thing he wants but doesn’t point to indicate interest. @ The child doesn’t speak or has very few words; he appears to understand very little. @ ‘The child may scem deaf because he doesn’t react to people speaking to them. @ The child may be over-sensitive to light or sound; flickering lights or a vacuum cleaner can provoke uncontrolled screaming. @ The child often walks on toes and when excited may flap hands. B The child often resists hugs and cuddles. @ The child frequently throws tantrums when required to do anything new. @ The child often fines up toys and obsesses on strange objects. Source: Autism Society of B.C. . For more info contact F.E.A.T. at 604-534-6956. Sunday, November 15, 1998 — North Shore News - 3 silence Losaas type treatment isa form of Applicd Behaviour Anaiveis ‘ABA: that teaches an artistic child bow to feant communiearion skills that other voungsters eam tinuiavely, Intense ong on ane repetitive therapy teaches and reintorces desired behaviour while ictively dicouraging inapproprate behaviour, A vround breaking (98S study by J ovaas showed that 47% of the children who received 36 to 40 hours of intensive therapy lost the label of aunsny by the age of five; 9S"o showed some kind off notable improvement. The catch appears to he thar children must receive help betore their brains “harden” areund the age of five. Although the therapy was known in BOC. it was not widespread and was pota trearment option finided by the Medical Services Pan. Two vears later it still ist, although the imath scems self-evident: pay for two or three vears of treatment now or pay for a lifetime of adult carceivers later. “By this time Pwas bawhng my head off, How were we going to get up te $60,000 a year?” Arleene credits two friends, Martha Dobbin and) Leontyne Burdette, for coming up with a straightforward solution. “Thev both said, ‘You know what? You should fundraise.” Meanwhile, because of Hayden's tall and the possibility of a repeat, the Ewings lost the dayeare ata neighbour's that had allowed Arleene to resume her teaching career. The province offered playeare bur when Arteene asked thar the funding ($30,000) be applied to her planned in-home therapy program she was refused. So the fundraising drive was on. Adleene’s mother donated $3,000 te what would become a trust fund for Hayden and a three-day workshop with a Lovaas-trained US. consultant was arranged to train LO potential therapists. “We couldn’: wait for the province to catch up to the ABA data thar had been available for 15 years,” says Arleene. Clayton Wick of the Capilano Rugby Club, a fiend of Rob‘s, organized a banquet for Hayden. A $20 ticket bought a steak din- ner and dance ar the club; 175 people attended. They collectiveh donated more money than was raised in ticket sales. The bartender was Sherry Law, who had met Adeene at a church mother’s group and become a friend. There was another connee- tion, Law has a 30-year-old sister, Debbie, ina home in Mission. Debbie is autistic. No therapy options were available as a child, She cannot speak. Their mother was Sherry’s age when she gave Debbie up as ward of court. In Debbie's private world Sherry is recognized — not as her sister but as her mother. “One of the reasons [ got involved was I would like to see some- thing better for the kids who do have autism,” says Law. Taw has helped out at every subsequent fundraising event for Hayden: dances, auctions, fashion sales and raflles. It's an ongoing struggle to pay for the team of therapists who share in the fight to pry Hayden from his box. But within six weeks of beginning, therapy Hayden spoke his first word. Says Law: “It breaks my heart that Debbie could have bene- fitted trom meatment. It’s such a waste to what her lite could have been. [think Arleene and Rob have done an incredible thing in making sure their child hasit fallen through the cracks,” The statistics say the divorce rate is 60% for couples with special needs kids, Bur Arleene and Rob support cach other as “best trends” and appear set for the long haul. “[ don't know how I could have coped with teachers and ail the reading and serting up a curriculum for Hayden,” says Rob, “She took charge of the whole thing.” Responds Arleene, “Rob has the best attinide ever: *Havden’s alive. He could be dead." “DT have a really good ery about once every three months and then T go and meet another autistic child who has just discovered feces or won't sleep through the night, or screams non-stop. And you know, we're lucky. We started at 24 years and Hayden sleeps through the night and has some coping skills. I know he's doing great.” The Ewings hope Hayden will attend kindergarten in September 1999 (with an assigned aide). Long-term they hope for a Grade 4 education. “Hayden is never going to be typical, but if he knows I’m his mum and Rob's his dad and he can come to us, that'll be great.” NEWS photo Cindy Goodman ALMOST the perfect family portrait. Four-year-old Hayden Ewing is beginning to interact with his sister, five-year-old Jessie and his mom and dad, Arieene and Rob.