October is Community Living Month in B.C., a time of year to recognize those with developmental disabilities and their contributions to the community. This story is part one of a two-part series in the Chilliwack Times on the challenges faced by parents of children with autism and how they are treated in the community. See here for part two.
Paulette Weismiller and Bernard Filiatrault know their 12-year-old autistic daughter Sophia is different.
The Chilliwack couple are well aware Sophia needs structure and order and, at times, she can be a challenge.
In addition to her autism disorder, Sophia has dyspraxia, a sensory processing disorder, she is non-verbal and she has high anxiety.
But Sophia is also sweet, friendly, happy and she likes to laugh.
So an experience with a local dentist who refused to treat Sophia came as such a shock and was such a terrible experience for the couple that they have filed a complaint with the B.C. Human Rights Tribunal.
"This is not just about this dentist in Chilliwack giving us a bad time and making us feel like we are not a part of their society," Bernard told the Times. "This is about what parents and families of special needs kids have to go through to get to where they're going."
Access to services
Sophia's experience at the dentist will likely surprise few parents of autistic children or kids with developmental disabilities.
But in some ways the uniqueness, the newsworthiness, of the incident points to the fact that here in B.C., and particularly here in Chilliwack, this was the exception.
"I was a little bit surprised," said Julie Unger, director of children's and community development for the Chilliwack Society for Community Living (CSCL). "There are so many great businesses and professionals in Chilliwack who are committed to making their stores and services accessible to everyone."
Having said that, most parents and caregivers can give examples of being rejected, excluded or discriminated against.
Local parent Ben Besler's daughter Hannah is also on the autism spectrum disorder. She attends the same horseback riding therapy program as Sophia.
Besler said he understands Sophia's parents' frustration. His family has experienced a few incidents, particularly relating to education. One that stands out, according to Besler, is when the family was discouraged by a private school from enrolling Hannah, even though additional funding would have been made available.
"However, some disappointments come as blessings in disguises," he said. "We have been blessed to find the necessary empathy and compassion in the public school system we have had our daughter enrolled in since kindergarten."
Sophia's story began in April when she complained of pain in her mouth. Paulette brought her to Dr. Yoon Jai Choi at Willow Dental Care in downtown Chilliwack.
Dr. Choi describes himself as an "anxiety-free dentist," and the clinic specializes in high-fear patients.
Sophia, like many on the autism spectrum, requires routine and familiarity or she can get upset. This does not mean she cannot try new things or go new places, but change needs to be introduced carefully.
"With a bit of familiarization, and patience, Sophia can get into doing anything," Bernard said. Her first haircut, for example, was done at a Chilliwack hair salon that did not charge the full rate knowing Sophia wouldn't last long in the chair and that they would be back to do more.
They hoped for the same sort of patience at the dentist's office, but they weren't so lucky.
At the first visit on April 27, Sophia was uncooperative with the X-ray machine, according to Bernard. Dr. Choi was able to look in her mouth and see her molars were partially erupted.
They made another appointment on May 11 to try again with the X-rays. But Sophia's parents said staff treated them badly from the outset.
"The assistant had no patience or tolerance for Sophia," Bernard said. "All we needed was a few more minutes and maybe some help from another person to help Sophia be still with the X-ray machine."
"To be that close-minded kind of threw me off," Paulette said. "They just shuffled us out the door." Bernard said they went home, Paulette was in tears and they wondered how many more times in her life Sophia will be rejected by service providers.
"We felt ostracized," he said.
Bernard later went to the clinic and asked for the patient log for Sophia. A note after the May 11 appointment said Sophia had a "screaming fit" and said, "She should be seen ONLY at a peds office! -please do not book again."
This entry was time stamped May 11, 2013 11:09 a.m., nine minutes after their scheduled appointment.
When asked about the incident, Dr. Choi said a dental assistant spent "close to an hour" with Sophia showing her the dental equipment, the air/water syringe and other things to try to make her comfortable.
When asked why the date time on the patient log was 11:09 a.m., Choi suggested "our software might have had a glitch in the hour setting and it should have been 12:09 not 11:09."
Paulette and Bernard were shocked when told what the dentist said.
"We showed up five minutes early for an 11 a.m. appointment," Bernard said. "We were out the door 10 minutes later.. .. [T]here is no way we were there for more than 15 minutes."
Regarding the treatment at his clinic, Dr. Choi said he sees patients with high anxiety and dental fears and different levels of sedation are offered to these patients.
"Sophia's father declined sedation," he said via email.
"We do not specialize in special needs children and we never advertise that we do.. .. We have other autistic patients which we are able to work with. Sophia requires a children's specialist and there are several in the immediate area who would be quite willing to help Sophia."
After some research, Paulette and Bernard filed a complaint with the BC Human Rights Tribunal on July 5 naming Willow Dental Care Chilliwack, Dr. Choi and the dental hygienist referred to as "jw."
Paulette said all they want is an apology, and maybe increased training for Choi's staff on how to deal with people on the autism spectrum.
Unger at CSCL said parents of children with autism often feel judged when they are out in public and their kids act in ways that seem unusual to families of neural typical children.
Autism does present some unique challenges in that the general public isn't always
able to identify a child as having autism from their appearance, Unger said.
Another recent example Unger was made aware of was when a family of an autistic girl was rejected by a dance studio.
"Those experiences do happen," she said.
See here for part two of this series and a look at the good news and what's going right in the City of Chilliwack when it comes to the treatment of people with developmental disabilities.
© Copyright 2013