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Mother battles delays for daughter’s diagnosis

From left: Julia and Emily Savory with Ashley White. The young mother has been left frustrated by unusually long delays for specialist medical appointments thanks to the ongoing COVID-19 pandemic. (Courtesy of Ashley White)


– with files from Rosalyn Roy

PORT AUX BASQUES – The pandemic has been difficult for all of us, but for Ashley White it has been particularly challenging. The young mother has been fighting to get necessary medical assessments for her four-year-old daughter, Julia, who White suspects has autism. Seeing the specialists they would need normally takes months in this province, but because of COVID-19 White’s struggle has lasted over a year.

“I noticed her speech was delayed, and that was during COVID. That’s when we picked up on to it, and I thought it’s better to get it checked, than be no worries and leave it be. So, I made a phone call to see about getting in to see Dr. Tony (Leamon, Speech Language Pathologist),” said Ashley.

That was in May of last year, and since then little headway has been made. That’s not to say there has been no progress.

Leamon worked with Julia, as she was nonverbal. He also provided a referral letter in Sept. 2020, and a month later Julia’s hearing was tested. That was necessary because she would often not respond to people talking to her. Although Julia passed the hearing test, further referrals were recommended to pinpoint the issue.

Ashley took Julia back to see Leamon in December, and also began seeing a behaviour specialist, Dr. Shannon White (no relation). However those sessions had to take place over Zoom calls, as Dr. White was based in Deer Lake and pandemic restrictions were in full force. Despite that, Julia did show improvement.

“I got to say it was a big improvement. Unfortunately she wouldn’t blow kisses or anything like that, so the behaviour specialist was a lot of help, and eventually she was able to blow kisses, wave, and give high-fives,” said Ashley.

Assisted by Leamon, Ashley was given further referrals in Jan. 2021. Meanwhile, Dr. White, who had been filling in temporarily, returned to a former position, meaning Julia has been without a behaviour specialist since February.

“It’s just been a waiting game,” admitted Ashley.

It was not until March that Ashley heard from the provincial autism team, and that was via letter. After waiting two weeks she received a phone call, letting her know that it would be six to eight months to have Julia seen, and that meant the same amount of time waiting for an appointment with the pediatrician, and the child psychologist.

In the meantime, Ashley had to sign Julia up for Kinderstart, the transitioning program into kindergarten. She contacted the school and made it clear that she strongly suspected Julia has autism, but they assured her it was alright and to go ahead with enrollment.

“Whatever I can do so far, I have done. Tony has been a lot of help. I said I’ll register. She still will go to school, and they will put in the extra help in place, as she will need it without even the diagnosis. They will do what they can. And then once we get the diagnosis, and knows it’s going on for sure, well then, perhaps they will do even more with her,” said Ashley.

However, she is still waiting and that is the most frustrating part. Leamon recommended that Ashley reach out to Joan Chaisson, co-founder of Autism Involves Me (AIM), for some guidance.

“If it wasn’t for her, I wouldn’t be so far with Julia as I am now. Because they say that early intervention is key, and so, without Joan over now, we would be so behind,” said Ashley.

With the help from Chaisson and Leamon, Julia has made some more improvement, and Ashley says she has been able to more fully engage with her daughter. Ashley has learned how to encourage eye contact, simplify her speech to better make a connection, and provide activities like crafts, through which her daughter can enjoy and challenge herself. The result has been an increase in Julia’s vocabulary and engagement with the world.

“Now she doesn’t carry on a conversation with you. It’s still as simple as a ‘yeah,’ and ‘thank you,’ but I do get a couple more words out of her. Today actually, she said ‘pretty.’ That’s the first time she’s said that,” said Ashley.

Chaisson has also helped with the behavioural issues in the absence of a behavioural specialist. Based on Chaisson’s recommendations to help calm Julia down, Ashley has gotten a swing and a trampoline. During kicking tantrums while trying to put her to bed, Ashley has learned to massage Julia’s feet.

“I got it from Joan. I can’t imagine just sitting here waiting for these doctors and not having all this knowledge,” said Ashley.

Speaking with other parents of autistic children across the island has allowed Ashley to see that her case is not unique. Many parents are waiting for a diagnosis to get the assistance their children need, and the problem has been only exacerbated by the pandemic.

“I’ve asked several people – people in St. John’s, Gander. I’ve spoken to other parents. It’s always a wait. So, the COVID has made it longer, but it’s still not two months. Maybe before it was a half a year, now we’re almost up to a full year,” said Ashley.

She believes that the province needs more doctors that can provide the several assessments needed for a diagnosis, preferably in a timespan closer together. Even without the pandemic, just attending these appointments is a task in itself, as the specialists are spread across the island.

Tim Savory, Julia’s father and Ashley’s partner, works out of the province but makes every effort to attend the Zoom speech therapy appointments with Leamon and keeps up with her progress despite working only night shifts. The couple’s seven-year-old daughter, Emily, has also been instrumental by including Julia in her studies and participating in activities with her.

“Actually because of her, Julia can now count to three,” said Ashley. “Emily felt like she (Julia) can’t be left out. I explained to her we think she has autism, so she’s a little different from you, and Emily said ‘But we’re all different, and that’s what makes us awesome.’ And I said that’s 100 per cent correct.”

With AIM’s resources and community ground work they’ve done, Ashley has also been able to encourage Julia’s development by taking her on walks to autism friendly locations in the town. That includes visits during the autism-friendly days at Foodland, Pizza Delight, and the go-kart event hosted by Kris’ Kustoms.

However, the pandemic has also meant that many autism-friendly resources have been unavailable at times. Chaisson confirmed that events like the autism-friendly day at Pizza Delight cannot happen without sit-in dining, and the group parent support meetings in the basement of First Choice Convenience has not occurred since the first shutdown.

However, with the province opening up, this may change.

“It has been impossible for us to gather in our Resource Room with correct social distancing. We do now have good news with Wesley United Church allowing us to use their building for our meetings. We are planning to have a meeting on Sunday, June 13 at 3:00 p.m.,” noted Chaisson.

While Ashley said AIM has been an enormous help, getting an official diagnosis will allow Julia to participate in the Join Attention Symbolic Play Engagement Regulation (JASPER) program for autistic children, and Applied Behavioural Analysis (ABA) therapy.

Provincial health has not responded to inquiries about delays.

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