For seven-year-old Ava Holmberg, vital skills such as communicating or paying attention are things she has yet to fully master.
Ava was diagnosed with autism at the age of three, a condition that severely affects her social skills as well as speech and nonverbal communication. According to AutismSpeaks.org, autism is usually associated with a “spectrum” to “reflect the wide variation in challenges and strengths possessed by each person with autism.”
According to Ava’s mother, Vikki, she would be considered “low-functioning” in terms of the spectrum because of her developmental delays. After her diagnosis, Ava entered the Applied Behavioural Analysis (ABA) program, which offers home-based resources to address the areas a child with autism struggles with.
“We have a speech therapist that comes in, we have an occupational therapist that comes in,” said Vikki. “The ABA program in Penticton basically teaches the parents (of children with autism) how to do the therapy themselves when they’re home with them.”
Vikki said Ava also has home visits three times a week from behavioural interventionists (BI’s), through a related program, that “troubleshoot what to do so Ava can learn as best she can.” In addition, Ava attends elementary school in Grade 2 where she has an individual education program.
“They have goals for her, so we have meetings several times a year to (discuss) her separate goals,” said Vikki. “They do have an expectation, they want her to learn to read and write and do math, but that’s not close to happening now.”
While the Holmbergs receive government funding for the majority of these programs, Vikki said it’s not enough to provide Ava with the support she needs. Eventually the funding will run out for these home visits from a BI so the family is planning to fundraise so they can hire a similar professional to continue Ava’s therapy and simultaneously train Vikki and her husband about the methods.
“The funding we receive is through an autism funding unit, it’s $6,000 a year,” said Vikki. “Our behavioural analyst would cost $9,000 a year if we used him one full-day a month. So it doesn’t even cover that, but thankfully we’re (booking) him for shorter and shorter.”
“We’re learning still too, how to do all of this. So the more that we learn (from the therapists), the less we’ll need the intensive part of her therapy.”
The Holmberg’s also receive funding from an at-home program sponsored through the government, but again, it doesn’t cover the costs associated with giving Ava the recommended amount of therapy a week. It is suggested she spend 40 hours a week with a BI, and she currently only spends six.
“When she was under six, she received $22,000 but that still was only three days a week at two-hour sessions,” said Vikki.
The Holmberg’s want to provide every resource they can for Ava so that she may grow to be less dependant on therapists and analysts, and even potentially become independent as an adult.
“She’s a very bright kid, it’s just finding ways to teach her because they’re not traditional methods,” said Vikki. “The trick is to find what motivates her.”
“The younger (these kids) are, the more intensive the (therapy) is, the better it works. She’s a little past the optimum age for learning, but it’s never too late.”
Vikki knows that it’s not guaranteed that her daughter will be able to attend post-secondary or work a job as an adult, but with intensive therapy “you don’t know until you try.”
“Otherwise, it’s her living with us for the rest of her life. And what happens when we are unable to take care of her or we pass away?”
A large part of Ava’s challenges are her inability to express emotion or communicate her feelings. This means her process of learning, and the process of learning for her parents, is slow.
“I feel like I don’t know her very well, and that’s one of the struggles of being a parent of an autistic child is getting to know your child,” said Vikki. “You don’t know, you can’t get inside their head, especially if they don’t communicate. Everything is trial and error.”
The Holmbeg’s have set a fundraising goal of $20,000 so they can continue to provide Ava with the therapy and resources that she needs. They will be hosting a bottle drive at their home, 516 Wade Ave. W., on Sept. 15 and 16 from 9 a.m. to 5 p.m. to add to the funds they’ve already been able to collect.
Multiple businesses have already earmarked their bottles for the upcoming drive including Cascades Casino, the Red Rooster Winery and Salty’s Beach House. Anyone looking to volunteer with bottle sorting, wanting bottles picked up, or wanting to drop bottles off can contact Vikki through her personal Facebook page or Ava’s ABA Facebook page.