'I don't want to have to share our deepest, darkest moments with the public': mother of autistic boy

One morning in January, Taylor Davies asked her nine-year-old autistic son to put on his boots so she could take him to school.

"He became very violent," Davies said. It was after spending an hour in the bathroom she had locked herself in that Davies knew: "We can't continue like this."

She typed up her story to post on GoFundMe, a fundraising site, to raise money for therapy for her son Grayson, who has been on the Ontario Autism Program wait list since 2016, but she couldn't get herself to post it.

"I hated it," the single mother told QP Briefing by phone from her Ottawa home on Feb. 13. "I don't want to have to share our deepest, darkest moments with the public. I am trying to maintain my son's dignity, because he's a human, he's going to grow up and I don't want him to see any of this."

So while she put away the post that day, it was after a few more incidents including his therapy centre saying they were concerned about continuing treatment at the facility due to safety concerns that Davies decided it was finally time to publish it.

"We're at a point where if he doesn’t get help, the consequences could be much more dire," said Davies, who has struggled to pay privately for the few hours of therapy that her son is currently receiving each week. "I decided to reach out publicly to try and get him some of the help he needs, because I know that he isn't violent by nature."

She said her friends with babies have referred to Grayson as the "toddler whisperer."

"He loves them and is the kindest, sweetest, gentlest little boy and seeing him get to that point where his mother is locked in the bathroom fearing for her safety, something just has to be done," Davies said. "Leaving the situation" and coming up with a safety plan was one of the recommendations Grayson's therapists had given her, saying it "wouldn't do anyone any good" if she was injured. "It's the worst feeling in the world to see your child struggling and wish that you could help them, but not being able to because it's not safe."

"I never want him to lose control and accidentally hurt someone in a way that...he would never get over that," said Davies, acknowledging that fear is something she lives with constantly.

"Right now I fear more what happens if he has a meltdown and it's someone other than me, because if it's me I know that he's a good kid and he's just struggling and I would forgive him and...know that there's no ill will there," said Davies, who by this point was in tears. "But if it happens to somebody else or another child and they get hurt, I don't think he would be able to live with that and what kind of consequences will happen."

She said Grayson "works harder to manage his behaviours when there are other children involved," but that she doesn't think he understands his strength when it comes to adults. Grayson's first instinct is to run away from the problem or the "demand" presented to him, but there are times when he can't do that.

"They've had to evacuate his classroom a few times when he has gotten agitated and it was no longer safe for the other children to be in the room," said Davies, adding that once the children did not return to the classroom until the next day because there was broken furniture around the room.

She praised her son's school and board — he's a Grade 4 student with the Ottawa Catholic District School Board — for trying to help him get additional support. As of January, he was assigned two education assistants — which she said is "almost unheard of" — to work with him for safety reasons. A few years ago he was sharing an educational assistant with one other child, but Davies said that changed in the fall of 2018 when that ratio shifted to 1:6.

"He started having increasing behaviours to try and get that attention when his requests for help weren't backed, because they couldn’t physically help all the children that needed help," said Davies, adding that he started running out of the classroom and getting aggressive.

"He would flip tables, hide under the tables, and then it spread to home where he would get very aggressive at the idea of going to school because it was so aversive to him to be somewhere that he knows he's not going to get the support he needs," she said. Grayson, who used to love books, had to have them hidden away at home at one point because "academics were so aversive that he couldn't handle seeing a letter, which is very hard to manage in a classroom setting."

Davies had a hard time getting Grayson to school at the time and in the midst of all that, she was let go from her job as an administrative assistant. Around that time, Davies was offered some parent training through the Children's Hospital of Eastern Ontario.

Last month, the centre where Grayson was receiving therapy voiced concern about continuing his therapy at the facility.

"He tried to break the windows, he pulled a baseboard heater off the wall, he threw a chair at the ceiling and it was just no longer an option to continue therapy at the centre because he was just too destructive with their property," Davies said. Grayson is now receiving treatment at home with two therapists being sent in for each session.

"When it's across the board and professionals are also struggling to manage and to help your child, then it becomes even more apparent that he needs more help than he's getting and the help can't stop, so I launched the GoFundMe and hoped for the best," she said.

When Grayson was reassessed last spring and was found to have higher needs than previously determined, Davies approached her family and they were able to pool together enough money by the fall to get him into three hours of therapy a week for six months, which ended in January.

"They helped in every way that they could," Davies said, adding that they hoped six months would be enough to "get him through this rough patch" and allow Grayson to go back to school full-time and Davies to go back to work.

"While it's definitely helped, there are still enough challenging behaviours that it's not safe for him to stop the therapy, there are too many safety concerns with school and at home," she said.

As of Feb. 25, Davies had raised $2,015, which she said would cover about one month of therapy of three hours each week, of her $13,500 goal for six months of therapy. She said it's been recommended that he get between 15-20 hours each week.

Davies said she tries to get Grayson to school by 11 a.m. each day and picks him up by 3 p.m. on days when he doesn't have therapy. She's often "on-call" for the school; when Grayson gets upset at school, calling her often helps him calm down. This also means fielding calls from teachers asking about strategies to use with Grayson. On days when using the washroom "feels like a demand," it means taking extra clothes to the school. With this, therapy and other doctors' appointments, working isn't much of an option, Davies said.

She so far she hasn't received an invitation from the government to apply for a "childhood budget" or "one-time interim funding," the latter of which the government has said it would offer to children on the autism program waitlist while it develops and rolls out a needs-based program.

"In an ideal world all children would get the help they needed as soon as it was acknowledged that they need help," Davies said, adding that in the interim she'd like to see the government focus on "urgent response services," which Minister of Children, Community and Social Services Todd Smith confirmed in December would be one pillar of the province's new autism program. These services would be "time-limited" and aimed at families "experiencing significant and immediate needs." While Smith noted urgent response services as being "key" and that the government was working to implement the four pillars "as quickly as possible," he didn't offer a definitive timeline for crisis supports, saying much of this would be the work of the implementation committee. Parents had expected the government to fully roll out its new program by April, but the government said there would be a delay.

Smith said on Feb. 18 that he hoped the government would be able to start having "core services" rolled out "later this year." Asked about crisis supports and when families can expect that aspect of the program to be offered, Smith's spokesperson didn't offer a definitive timeline.

"We are taking a phased approach to the implementation of the new OAP. Elements of the needs-based program are being rolled out this year, with additional elements to follow in 2021," Christine Wood wrote in an email.

Smith stressed that the government was taking "the time to get this right" and was working to provide "something to every family." He noted the "childhood budgets" and the interim funding the government is offering families, acknowledging that while it's an "imperfect solution" until a needs-based program is implemented, he's met families who are "thrilled they are finally getting something from the government" after years.

"What happens to the children in crisis now? What are those families doing?" Davies asked. "Every time there's an announcement from the government that the launch of the program is being delayed again, it's like seeing the light at the end of the tunnel be put out."

Referring to a photo of her son with his friend Lumi "on a good day," Davies said "he deserves access to therapy to help all of his days to be good days."

Davies said she's recently starting seeing a counsellor to help her cope with feelings of depression and anxiety through the provincially-funded Increasing Access to Structured Psychotherapy program.

"You can't live like this, it's being constantly on edge in your own home, it's feeling helpless, there's no worse feeling than seeing your child struggle and knowing that there are ways to help them that you can't access...and that there's a financial gatekeeper in the way of your child receiving the healthcare they need," she said.

"It's not a life when asking him to use the washroom, it could go fine or he could try and choke me and throw a chair at me, and we just can't continue like this," she said. "He needs to be able to thrive and he is so capable and he could be anything that he wants, he will do great things, he just needs a little bit of help to get him through this patch and I just couldn't let him fall through the cracks."

If Grayson were to receive funding for therapy, Davies said it would mean quicker progress for her son developing the skills he needs to attend school, socialize with other children, use the restroom independently or attend community events.

"We would just be able to go into the community more often, we would just be able to live our lives and he would get the help he needs and he would thrive," she said, pausing. "I’ve stopped letting myself think that that is even a possibility for a while, so it's hard to think of that option because I don't want to get my hopes up that help is coming and it's not, and right now I just don't feel like it is."

It would also enable her to get off the Ontario Works social assistance program, return to work and "interact with adults that aren't just discussing ways to get my son support," Davies said.

"It would allow us to stop having to relive all of this and we could just move on from having to share our story over and over again," she said. "I think that's almost the hardest part; it's hard to live it and then it's harder to have to retell your story over and over to be able to hopefully get some sort of help."