A Westville mother has reached the breaking point over care for her autistic daughter.
Angela Hanebury's daughter, Rebecca Falconer, was diagnosed with the disorder when she was about 2 1/2 years old.
As a young girl, care for Rebecca was manageable. But at age 16, she's bigger and stronger, and the episodic behaviour her mom was able to control when she was a little girl has become too much.
At her Westville home on Monday afternoon, Hanebury's hands bear scratches from Rebecca's tantrums. It's because she helps her daughter with a daily routine most take for granted - showering, cleaning, most forms of interaction - that Hanebury has the nicks and cuts.
Her daughter is in her bedroom upstairs. It's the best room in the house, Hanebury says, and that's where Rebecca feels most comfortable.
"She's just had a chocolate bar, she'll be good for a bit."
At the request for a photograph of mother and daughter together, Hanebury's hesitant. Because people with autism are sensitive to their environments and very resistant to transitions and change, bringing her down for a photo would likely trigger an episode.
Little concessions like this are made every day for mom and daughter and more are made all the time. For instance, when Rebecca was younger she enjoyed swimming - and her mother counts her as a strong swimmer - but that's become impossible too. Even going for a car ride for a weekly meal has become impossible - and dangerous.
The family weighs the well-being of Rebecca against what they can and can't do. For Hanebury, a single mom of three who is transitioning out of marriage, it's draining emotionally, physically - and now financially.
In short, both Rebecca and her mom are prisoners in their own home. That's how Hanebury describes it.
"I need her to be placed in a place where she's going to be safe, where she's going to have a better quality of life than what I can give her here."
She has sought adult placement for Rebecca, but says the waiting list is long - at this point too long to see if something just comes up. Generally speaking there isn't a high turnover in care for autistic individuals. This week, Hanebury will meet with representatives from Community Services, but it's not likely to solve the immediate problem.
"They're going to be meeting on Wednesday for brainstorming, to find out what they're going to do with quite a few individuals, but Becky is involved."
"I know that if she's in a place where there is a lot of people, she'll have a better quality of life," she said.
Finding placement easier said than done
As it stands, it isn't a quick or a simple task to find placement services for people with autism in this province, and more difficult still to find a place close to home.
Any type of residential placement in Nova Scotia would be facilitated by the Department of Community Services. In Rebecca's case, the method would be to apply to the department and then go on a waiting list.
Cynthia Carroll, the executive director of the Provincial Autism Centre, said while she doesn't have up-to-date figures on the availability of residential services in Nova Scotia, she acknowledges that such services are scarce and there isn't a high turnover.
The centre is a non-profit organization dedicated to helping people in this province affected in one way or another by autism.
But also it can be difficult to find staff within those facilities that understand autism.
"That's the challenge that we're finding that parents are reporting," Carroll said.
Because understanding the condition is as much about personal experience as it is technical knowledge. While an inability to communicate with other people is associated with autism, it is considered a spectrum disorder. Every person who has it reacts differently.
"One intervention that works with one individual may be completely different for someone else," Carroll said.
Finding proper care for people such as Rebecca often requires parental involvement, because a parent usually knows their child best.
"That's why it's really important to collaborate with a family and seek out as much information as possible."
Supporting the cause
Recently a group was started on the website Facebook.com in support of Angela Hanebury and daughter's cause. As of last night, more than 600 people had joined.
The page may be accessed by going to the website and searching for, "Angela and Rebecca Hanebury Falconer need your help."
