More support needed for Penticton family with severely autistic daughter

Penticton Western News - 12/1/2019

A Penticton family is continuing to advocate and fundraise for treatment for their severely autistic daughter.

Ava Holmberg is eight-years-old, but her mother, Vikki, said her mental capacity is more akin to that of a toddler. This is due to Ava's extreme autism, leaving her non-verbal and unable to communicate with and engage in the world around her.

"She's in Grade 3 at school but she's not reading or writing or participating really in anything that they are doing," said Vikki.

Vikki explained that because Ava is "low-functioning" – a term she uses hesitantly to define her daughter's lack of development – she relies on behavioural interventionists and analysts to work with her throughout the week and develop programs that assist in her learning.

These specialists also work with Vikki and her other family members to "train" them in working with Ava when they are not around. Though the Holmberg's government funding of $6,000 annually, Vikki says the costs for these specialists and their programs equal $32,000 per year, which does not even include extra-curriculars like swimming, which would also be beneficial.

"Ava needs a lot more intensive treatment. The program that we're in teaches the parents, so we work with her all the time because obviously she sees us the most. But she needs a lot more intervention though, for us to get more help," said Vikki. "We privately hired one behavioural interventionist, but we're hoping to bring on a second … these specialists are the most costly because they are the most involved."

She said they help Ava with language and speaking, potty training, muscle strengthening and physiotherapy and more.

Vikki said she "fought very hard with the school board" to have an Applied Behavioural Analysis (ABA) program set up at her school.

"I wanted her to have as much opportunity for learning as possible," said Vikki, who added Ava is also in a partially-covered At-Home program that provides extended school therapy to school-aged children.

The Holmbergs have held multiple fundraisers in the past to cover some of the costs of Ava's therapy, but Vikki said it is hard because it is an ongoing thing and she feels like she is "harassing the community."

"We have a GoFundMe account, we have a Facebook fundraiser, we have held bottle drives, we have an ongoing Epicure fundraiser online," said Vikki. "This is not just a one and done thing, we need to raise an additional $26,000 for her therapy every year."

On top of fundraising and getting Ava her much-needed therapy, Vikki said it is also challenging that people do not fully recognize Ava's condition. She said it is complicated since autism is a spectrum, some people assume that Ava's lack of development is because she is spoiled.

"Even talking to other parents with higher functioning kids (with autism), they ask why is all this stuff necessary. There are some where autism is just a mild impairment but they can get through life," said Vikki. "And then there's Ava, who without really successful intervention will end up in an institution."

Ava's struggles will only get worse as she continues to grow, said Vikki, who added that she is very strong for her age and has started to lash out aggressively in certain circumstances. This can be common for people with non-verbal autism, as they don't know how to express themselves, but they do not mean to hurt anyone.

Vikki's hopes are that they can continue to afford this costly therapy so that Ava can have a chance at leading an independent life, and that the burden of caring for her does not fall on her siblings in the future.

JordynThomson