"Mommy, I don't love you anymore."
Jackie Reynolds sometimes hears those harsh words from her five-year-old daughter, Payton, who was diagnosed with moderate to severe autism three years ago.
The 34-year-old knows such words are just a reflection of Payton’s developing social awareness. But they still sting.
“She says it so matter of factly,” said Jackie. “But I know she doesn’t mean it. She just doesn’t have that filter.”
Hurtful words aside, Jackie is delighted, and at times amazed, with how much Payton has improved since her diagnosis.
“At 21 months, I don’t even know if Payton could say one word,” said Jackie. “She also had the lack of eye contact and did self-harm. If I got mad she would hit her head off the floor. If we were on the playground, she would get violent. It was stressful.
Looking back, Jackie is grateful for the “moderate to severe” classification, because it kick-started her family to act.
“We went full throttle,” said Jackie, who quickly put Payton into behaviour therapy and other special programs.
“Parents want to hear that their child’s autism is ‘mild’, but that can do more harm than good because it may not be the spark the family needs.”
Fast forward to today and Jackie is astonished with how far Payton has come. She can dress herself, go to the washroom alone, brush her teeth, and generally be very independent.
“We couldn’t be happier,” said Jackie. “We got the diagnosis at the best time – there is so much more awareness, programming and information available. I wasn’t sure Payton would be able to talk and here she is having play dates…It’s amazing.”
Lack of Awareness
While thrilled with her progress, Jackie gets frustrated with parents who question Payton’s diagnosis and dismiss her disorder, claiming she is just growing out of it.
“They don’t see that I quit my job,” said Jackie.
“They don’t see the 25 hours a week of therapy. This didn’t happen overnight. I had to endure lots of blood, sweat and tears, and lots of crying.”
And Jackie still worries about Payton’s next phase, which she describes as “the things you can’t see” – maintaining relationships and friendships, and being able to interact socially.
“What’s acceptable for a five-year-old isn’t acceptable when you’re 15,” said Jackie. “The demands change.”
Hope Springs from Holland Bloorview
Calming those fears is the endless support and encouragement she gets at Holland Bloorview, where Payton is taking part in research at the hospital’s Autism Research Centre.
Payton has undergone genetic testing, as well as behavioural interviews and assessments, all of which add to the understanding of autism, which will lead to more targeted treatments.
“I want to do anything I can to help with the research,” said Jackie. “It makes you feel better and you’re among people who really care about this.”
Payton also comes to Holland Bloorview for swimming lessons once a week with instructors who are skilled at teaching kids with disabilities.
“Swimming is such an important life skill,” said Jackie who wants Payton to join in if she has friends with a swimming pool, or a cottage with a lake.
Watching her from the pool’s observation deck, Jackie finds strength in meeting other moms who share their experiences of having kids with disabilities. “We have so much in common…they get it,” she said.
That camaraderie has played a big part in her upbeat attitude.
“A diagnosis like this can make you feel alone. But here at Holland Bloorview, you have support and you know you’re never going to be judged in any way.”