Back to school when your child has a disability
Most of us need a few weeks, but this family starts getting ready in the spring.
By Alyson Samson, CBC News, Newfoundland & Labrador September 6, 2017
You might think your back to school list is long, and you’re just making it in under the wire.
For Dave Peddle and Heather Pellegrinetti, their back-to-school planning starts before the previous year ends.
Their 10-year-old son, Dante, is playful and mischievous, and heading to Grade 4. He also has cerebral palsy.
‘We’re Dante’s advocates, and if we fall down on the job then Dante doesn’t get the best that he deserves. So we work hard on that.’ Heather Pellegrinetti
“We usually start thinking about it in March, and that’s doing paperwork for the next school year, that’s the papers for student assistants, IRTs, and busing,” Pellegrinetti said.
It’s not just making sure Dante is challenged and attended to in the classroom — it’s the extras that make his day a little easier.
“We have extra school supplies. We have different scissors that need to go school with him, we have sensory products that need to go, we have things that go on his pencils, we have lots of little extras that every year we’re kind of like, did we remember, did we remember?” Pellegrinetti said.
“We usually forget something. There’s always something, because it’s so much.”
iPad, special footwear, extra clothes |
Dante’s verbal skills are not as developed as most 10-year-olds, so he needs his electronic devices.
“We have his iPad too because it has all its schoolwork on it, and we pile up the van and go.”
Back to school is more than outfitting Dante in the latest sneaker styles and fashionable clothes; it’s appointments to make sure his wheelchair is the right size and his orthopedics fit.
“They strap on to his feet. They help him walk and without them he has a lot of trouble walking,” said his mom.
Dante’s sneakers are also designed for his needs. “They just slide into the back, like this; he slides his foot in, we strap him in, and he’s ready to run.”
With cerebral palsy, Dante’s a little less independent than the average fourth-grader, so he comes with a lot more gear.
“This one we’re calling it his hygiene package. With Dante’s CP he doesn’t have muscle control the same as everybody else; his stomach muscles have a hard time holding when he has to go to the washroom,” Pellegrinetti said.
“So he needs to keep with him at all times an extra change of clothes, he needs some diapers to help in case something happens, he needs baby wipes, and that’s just one bag — it has to be refilled a lot as the weeks and days go.”
Then there are the meetings between school staff and outside experts.
“We have a private speech therapist, a physiotherapist. Also, a Janeway occupational therapist goes in so anything he needs for the school… or special equipment, they make recommendations,” said Peddle. “Our first meeting with the school was like 20-something people.”
As parents of a child with disabilities, Pellegrinetti and her husband are focused on one thing. “We just want the best for Dante. We want him to have an education like every other child,” she said. “We’re Dante’s advocates, and if we fall down on the job then Dante doesn’t get the best that he deserves. So we work hard on that.”
Source CBC News
Also see
How a Springfield mom helped her son with autism fit in at high school The Kansas City Star
Back-to-School Tips for Students Who Have CP, Other Disabilities Cerebral Palsy News Today
Alberta boy with cerebral palsy has memorable start to Grade 12 Global News Edmonton
Adolescents with cerebral palsy: Transition to high school CanChild
Helping Children with Cerebral Palsy Transition into the School Year Penfield Children’s Center