His mom, Charlotte, says despite the fact that the nine-year-old has very limited verbal skills and is at the level, developmentally, of about a 2 1/2-year-old, the stringently predictable schedule he’s kept on throughout the year has helped him acquire skills and has kept from exhibiting some of the typical behaviours that come with his disabilities.
Isaiah suffers from galactosemia, a rare disease that can cause brain damage at birth and impact fine-motor and gross-motor skills. He has global developmental delay and autism disorder.
Because of his disease, his mom says he’s also on a very restricted diet.
She adds that he’s the “neediest” of all four of the children in her blended family — which includes a 16-month-old daughter.
“He cannot be left alone … he needs constant one-on-one care,” Charlotte said Tuesday, noting that’s what he essentially gets in his Toronto District School Board classroom.
Charlotte says because her son takes “considerable time to acquire skills” they were thrilled that he was able to achieve proper toileting without the need for support — a “huge goal” for him.
That was until COVID-19 hit.
Toileting, says the senior family law clerk, was one of the “first things to go out the window” when classes were shut down and Surrey Place shuttered on March 13 as the entire country went into social isolation.
As soon as the structure he so desperately requires disappeared, Isaiah started reverting back to doing things he was doing five years ago, his mom said.
His behaviour has also changed a lot, she says, noting he’s very anxious and has gone back to what is called stimming — actions typical of autism such as making high-pitched noises, grinding his teeth and kicking.
Charlotte says she took him to her office one day for a brief period and a normally quiet kid “tore the office apart.”
He asks everyday whether he’s going to school and feels like he’s “being punished” for not being able to go.
She said his teacher has tried her “absolute hardest” to keep up his studies online using Google Chat, but it’s “not working” because someone with the cognitive ability of a two-year-old really can’t manage in front of a screen for 30 minutes.
“I was shocked that it happened (he regressed) so quickly,” Charlotte said. “It feels like such a massive blow.”
Charlotte felt so devastated with the way he’s regressed, she took to Facebook a few days ago to express her dismay Her posting was brought to my attention by a mutual contact.
“Just like that, regression is our reality now, as much as I have tried to stave it off … Isaiah is the most inspiring person I know … he works the hardest. He always tried his best,” she wrote.
“These six weeks away from school have brought him to his knees … it’s the intensity of the struggle that has me up at 3 a.m. watching old videos of him just being himself and hoping we don’t lose that version of him.”
Charlotte said there are many other kids like him “not doing well” during this pandemic and she wonders why therapy can’t be deemed an “essential service.”
Charlotte feels time is of the essence; otherwise Isaiah will be a “casualty” of the COVID-19 pandemic.
“When Isaiah has a bad day, it reverberates through the whole house,” she said. “There is no guarantee he will get back the skills he had.”