Civil Rights Now! has gathered stories of the real lives of BC voters and children with disabilities and their families. Today we will start posting the stories. They are evidence that BC is not the Best Place on Earth for Canadian citizens with disabilities and their families. If you want to share your story with the readers of Civil Rights Now’s website please contact us civilrightsnow@yahoo.ca

Our first story is that of Civil Rights Now! Board member Beverly Sharpe and her daughter Allison.

PART ONE

In 1994 Bev Sharpe gave birth a girl. Allison was a welcome addition to Bev’s family. At the age of eighteen months Bev was overjoyed to hear her daughter say the word “mama” for the first time but that joy soon turned to concern when Allison did not say it again. Bev, her husband, and son kept trying to prod Allison to say it again but she did not. Bev thought to herself “well this is different but she is a quiet, happy, little soul” and so Bev thought that Allison was doing things at her own pace. At the age of two Bev noticed that Allison wasn’t saying any words and she was “a little troubled by this because her brother was quite the little chatterbox”. Bev was told, by well intentioned friends and neighbours, that Einstein did not talk until he was five but Bev was concerned and so she called the North Shore Health Unit. A woman came to the house and explained that she was a Play Therapist and she suggested that Allison and her family engage in play therapy. The therapist also suggested that Bev book a pediatric appointment so that a diagnosis can be given, if there was one to give.

In late 1996, when Allison was two years and four months old Bev saw her family doctor who put her on a wait list for a pediatrician. There was a seven month wait for the appointment and during those months Bev took Allison to a special pediatric facility to test Allison’s hearing to see if she may be deaf. Allison and her hearing passed with flying colours and Bev continued to wonder what was going on.

During this time Bev also began to notice unusual behaviour, “Allison did spend an inordinate amount of time looking at the lines on her hands or staring out a window, squinting at the sun.” One day Bev stood in the doorframe of her kitchen and observed Allison who had pulled a chair up to the counter and was running her fingers through the beans soaking for dinner. “I remember standing at the door observing this child and thinking this is just so different.” Bev thought to herself that “whatever the problem is, if there is one, if you’re different I don’t mind because you’re a nice little girl and we don’t all have to fit into the mold”.

Allison continued to use the Play Therapist while awaiting the appointment with the pediatrician. She also had a Speech Language Pathologist through the North Shore Health Services work with Allison. The pathologist would spend half an hour each week with Allison but there no progress was made.

The appointment eventually rolled around and Bev took Allison hoping for answers. It was at this appointment when the pediatrician said the word “Autism”. As Bev relays her experience she begins to choke up with emotion at the thought of that shocking word. The appointment may have been fourteen years ago but the emotions of that day are still close to the surface as Bev relives hearing the word ‘Autism’ attached to her Allison.

The word Autism was not one that Bev had heard often and the “first vision that popped into my head was someone in an institution banging their head into a wall. I had no knowledge of Autism.”

The appointment with the pediatrician was mid-day and after hearing the doctor’s opinion Bev had to go back to work. “I took this word in and was stunned. I had that terrible dry mouth, that terrible sense that something is very wrong.” The first thing Bev did upon arriving at work was to look the word Autism up in the phone book. The Autism Society was listed in the phone book and so Bev called. They advised her to come to their office after work and so once the day was done she headed straight there. “I had three very nice ladies pass me tissues and give me videotapes on how to grieve. No one spoke about treatment”.

The next day, a Saturday, Bev was still in shock about the diagnosis and what to do. A neighbour asked Bev if is she was okay and Bev explained that the doctor had placed this label of Autism on Allison and the neighbour said “you must talk to Jean Lewis my neighbour because she has a child with Autism and she is doing a treatment program”. Bev was shocked to hear “the word treatment and I, I, I, was delighted, I was like oh there is treatment?” Bev stutters as she remembers this conversation still able to remember her shock and joy at hearing the word “treatment”. “I heard this from a neighbour but I didn’t hear this from the health unit, the Speech Pathologist, the Play Therapist, or the Autism Society at that time.”

The day after the diagnosis Bev phoned the Speech Pathologist and the Play Therapist to explain that she had the appointment with the doctor and that he used the word Autism. “What I wanted from those ladies was ‘oh we’ve worked with Allison all this time, don’t worry we don’t agree’, and they said ‘well we kind of knew as soon as we saw her’ and I said ‘what are you talking about, you knew this six months ago?’” Bev was angered that these women wasted six months of her time and her child’s time. “They actually did collateral damage” Bev explains, as the earlier the diagnosis the better chance the child has with treatment. She questioned them about it later and they explained that they were not qualified to give that opinion. Bev was outraged that people knew what her child had all along but did not feel that the information had to be shared.

Bev also spoke with a social worker that had been assigned to their family when they were given the diagnosis of Autism. Bev asks for a break in the interview to take a moment to collect herself as she relives the conversation with the social worker about Allison’s future. “I was told that children like Allison aren’t often able to remain in the home for more than a couple of years”. Bev understood, without the words literally being spoken, that the women was saying that Allison would most likely end up in an institution. The social worker then suggested to Bev that Bev “focus on my son’s needs”. As Bev explains the social worker was “basically telling me that Allison was a write off and not to spend too much time worrying about it.” Bev holds back the tears and anger as the recalls being told that there were “were special places for kids like Allison.”

PART TWO