Now five, Dylan is in kindergarten and has gone from having as many as 100 seizures a day, to having them only occasionally. Dylan has been diagnosed with mild chronic astatic epilepsy, and will continue to require support services from her school now that she has “aged out” of services at the child development association, which focuses on children from birth to age five.
The association funded two years of part-time pre-school for Dylan, and has been instrumental in helping the Powseys make the transition to the public school system, where Dylan will do a mix of classroom learning and home-schooling. Association staff have been amazing resources for the family, says Becky, helping navigate a complicated system for families of children with disabilities.
But the mother of three can’t help but wish that Dylan’s health issues had been identified sooner so that her child could have received Child Development Association help longer – and during the early years that are most critical for brain development and improved health outcomes. She also wishes that waitlists hadn’t been quite so “insane” once her daughter was approved for services, because that, too, delayed Dylan’s access to the supports she needed.
“If you don’t realize there’s something different until your child is two or three – maybe you’re just waiting to see if they will catch up – you could easily wait until they are four without knowing,” says Becky. “So then they get a year of services, and then they turn five and no longer qualify.”
Becky Powsey was the first in the family to spot the curious little head bob that her young daughter did sometimes, almost as if the toddler had fallen asleep for a second or two.
For a little while, Becky was the only one who seemed to see it. But that changed when little Dylan’s nods progressed into full-on blackouts that left her face down in her food, or sent her crashing into furniture as she fell to the floor. Becky was doing volunteer work at the Comox Valley Child Development Association right around that time, and mentioned Dylan’s blackouts.
“It was almost like someone had taken her battery out, then put it back in,” recalls the Courtenay mom. “She was two by that point, and I was also concerned that she wasn’t talking, or even making sounds.”
Staff at the association told Becky that her daughter might be having seizures. Dylan was enrolled in the Infant Development Program, and for the next year began receiving services at the family’s home.
“We learned that she was having ‘atonic seizures’ - a loss of muscle tone that caused her to have a ‘drop attack. She’d fall into a table or smash into the ground,” says Becky. “The centre was a great support to me, giving me the tools to help Dylan develop her skills safely and improve her fine motor skills.”
Learning how to support your child with a disability is not only about accessing services, notes Becky. The Child Development Association was there for the Powsey family throughout, helping them apply for a disability tax credit, find mental health services when Dylan began showing signs of anxiety, and determine the level of service Dylan needs now that she’s school-age.
“None of this is a very easy system to manage,” says Becky. “And I’m even from the Comox Valley. I know lots of people. I think about how this would be for those who are new here, how difficult it would be. I don’t know what families would do without the centre.
How you can help: Learn more about child development and early intervention in British Columbia at www.bcacdi.org, and the Comox Valley Child Development Association at www.cvcda.ca. The centre is a member of the B.C. Association for Child Development and Intervention, which represents 30 agencies that deliver services to 15,000 children and youth.