Jade’s story

Holding down a job while pregnant and having a two-year-old running around is stress enough, but for Fawn Fritzen, life was about to get much worse. Just months after she turned two, Fritzen's eldest child Jade started having seizures.

Holding down a job while pregnant and having a two-year-old running around is stress enough, but for Fawn Fritzen, life was about to get much worse.

Just months after she turned two, Fritzen’s eldest child Jade started having seizures.

“All of a sudden, for no real reason,” Fritzen said. “So from that point on, life wasn’t really ‘normal’ anymore.”

While dealing with this, Fritzen started to notice Jade’s speech development was hampered.

She wasn’t learning to talk.

Slowed speech development is a common concern that often spurs parents to visit the Child Development Centre, said executive director Alayne Squair.

When Fritzen called three years ago, it took eight months to see a specialist.

Today, the centre works with almost 700 kids, and its waitlist has ballooned to 100 children, said Squair.

Staff, experts and therapists have been excellent, said Fritzen.

They suggested testing for motor skills at the same time they analyzed Jade’s speech development.

They brought her into programming, which led to more tests that discovered a chronic ear problem that probably affects her balance.

They suggested Jade be fitted for a helmet. At the time it didn’t seem necessary, said Fritzen, but by the time it was ready Jade’s seizures had worsened.

She was having hundreds everyday.

The centre supported her throughout, said Fritzen.

They sent someone into the home to watch Jade so Fritzen could tend her newborn.

They voluntarily prepared assessment reports for appointments Fritzen had scheduled with doctors and specialists.

And when Jade started a strict diet that has shown some success reducing seizures among children with myoclonic astatic epilepsy, staff helped make life as normal as possible for Jade at the centre.

When the family couldn’t bring Jade in for sessions, the staff and experts from CDC would visit their home.

Now, Jade is a part of the preschool program.

A meeting is held annually to decide which of the kids gets into the preschool program, Fritzen said.

“It is really long and difficult – and emotional – because they really do care about the kids they work with, and they know what a huge benefit the program provides,” she said. “It’s tough to make the decision about who is going to get the service.”

“As a parent, when you’re fighting so hard to do your best for your special needs child, it’s an amazing relief to know there are others who are on your side.”

Almost every Saturday she asks if tomorrow will be a school day so she can go back, said Fritzen.

And the diet – which is timed, measured, weighed and must be eaten entirely – is proving successful.

Jade is expected to have to follow the regimen for at least two more years, but it could mean she will never have seizures again, said Fritzen.

In many cases, the same epilepsy can be catastrophic, she said, dropping her chin and fidgeting her fingers.

But Jade hasn’t had a seizure in eight months, she said, smiling.

Catching such problems early is often key to effective treatment.

The Child Development Centre focusses on children from birth to age five.

Jade turns five on Sunday.

“It would be beneficial if the CDC could include all youth,” said Yukon’s Child and Youth Advocate Andy Neiman.

Working to develop and enhance child development is always beneficial, but there must be consistency, he said.

The support should be there from birth to 18.

Does the Yukon provide that consistency?

“No,” he said, looking straight ahead, voice firm.

As for mental health services for youth, “they’re basically nonexistent.”

Many of the 60 files on his desk are from schools. The lack of programming makes them unable to tackle it, he said.

Of those files, about one-third are children with special needs, he adds.

Education officials could not say how many Yukon students are designated “special needs,” even though each such child has an individual learning plan, a legal document, that teachers must complete if they require an educational assistant or remedial tutor.

“We don’t count the kids,” said Irene Szable, the department’s manager of special programs.

There are 5,000 students in the Yukon school system, she said.

And the department’s 2009-10 annual report is filled with statistics, listing the number of students in each classroom, in each school and the number of students in french programming.

It also says there are 125 educational assistants and 28 remedial tutors. That’s approximately one for every 30-kid classroom.

The number of students needing assistance is less than 25 per cent of the 5,000 students in the system, said Szable, when pressed.

The need is growing across the country and is not unique to the Yukon, she said.

Back at the CDC, chair of the Board of Directors David Laxton is trying to sell raffle tickets.

On February 14, the centre will raffle off an ATV, snowblower, TV, generator and $500 in cash.

It’s trying to raise enough money to pay off their handi-bus – it replaced an old van that was not wheelchair accessible or reliable.

The bus takes Jade to and from preschool four, half-days a week.

An assistant on the bus walks Jade to the door and waits until it is answered.

She needs new music for the ride, she tells Fritzen.

“Jade already knows all the words,” she said.

Contact Roxanne Stasyszyn at

roxannes@yukon-news.com

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