Family of boy with multiple disabilities pleads for more help from Quebec

Zachary Gallucci has autism and other challenges including OCD, anxiety and oppositional defiance disorder. His parents say they need more support from Quebec to pay for his services.

Institutionalizing Zachary Galluci would cost government thousands more than subsidizing educator's cost

Zachary, 11, has, among other challenges, oppositional defiant disorder which leads to regular fits of violence, but when he's feeling well, he likes making his mom coffee in the morning. (Shari Okeke/CBC)

Eleven-year-old Zachary Gallucci greeted me at the door when I arrived at his family's home in Saint-Hubert on Montreal's South Shore and eagerly offered to make me a coffee.

It was a clear sign he was having a good day, his parents explained, adding that when Zachary is stressed, it's a completely different scene.

"My husband and I are pretty scratched up, my (older) kids have gotten hit, chairs of the kitchen go flying, anything he can get his hands on will go flying," said Cindy Jean, Zachary's mother.

At the end of their rope

Zachary has multiple challenges: In addition to oppositional defiance disorder, he's been diagnosed with autism, obsessive compulsive disorder, anxiety, dyslexia and Tourette's syndrome.

His parents are adding their voices to those within the group Parents jusqu'au bout, which roughly translates as "Parents at the end of their rope." 

Cindy Jean and her husband Gianni Galluci say the emotional, physical and financial stress of caring for their 11-year-old son has taken a toll on their family life but they're determined not to place him back in an institution. (Shari Okeke/CBC )

The group is calling on the Quebec government to provide more financial support to parents of children with severe disabilities.

Cindy Jean and other parents in her situation get about $4,000 a year from the provincial and federal governments combined, and that's not enough, said Anouk Lanouette Turgeon, a spokeswoman for the group. By comparison, foster parents receive as much as $37,000 a year.

"We think the government should accept to give us at least a financial support that would help us keep our heads above water, keep our families together, so we don't end up placing our children and being separated from them," said Lanouette Turgeon.

Violent fits

Although Zachary was calm during my visit, politely showing off his coffee-making skills, his parents explained that when he feels stressed he can become violent.

On the first day of kindergarten "he actually destroyed the principal's office: he had physically hurt her, he broke her necklace ...He was an extreme case for a 5-year-old," Jean said.

That episode led to six months in hospital, during which time Zachary was diagnosed and medicated and started various therapies.

After a second stint in hospital when he was seven, health care professionals urged Zachary's parents to place him in an institution.

'I didn't see my dog'

He spent a year and a half in the institution, returning home only on weekends.

"I couldn't go outside a lot. I didn't see my dog. I couldn't really see my parents a lot ... I didn't like being there," Zachary recalled about that period, adding that petting his dog helps calm him down.

Daybreak's Shari Okeke spends time with one family who's son needs special care, but can't afford it. "Why not just help me help me pay her to keep our children in our homes we are the best care givers we can be."

Jean looks back at that time as more exhausting than having him home full time, because of all the running back and forth.

The whole family had to be present for therapy sessions. There were many medical appointments — and then the break in routine for Zachary when he'd return home on weekends would lead to more fits of violence.

Marriage suffered

"It really took a hard hit on our marriage ... My other children have suffered tremendously. I can't lie: Zachary's physical violence towards them, the time we take away from them, they have lost so much time with us," Jean said. 

Family life improved after Jean managed to find a specialized educator whose approach she believes led to a reduction in Zachary's violent fits. Those outbursts happen about once a week now, instead of every day.

If he's headbutting, she "showed us how to hold his neck, hold his shoulders without hurting him," said Jean – no small feat now that Zachary weighs 154 pounds.

Jean said the Quebec government, through a local rehabilitation agency, paid for that educator, but the family no longer has access to that funding.

It's not clear why.

Earlier this week, a spokeswoman for the regional health agency, the CISSS de la Montérégie-Ouest, told CBC she would not be able to confirm anything about Zachary's case before Wednesday. By week's end, she had yet to provide any information.

The specialized educator still works with Zachary, but Jean says now the family cannot afford her services as often as when they were subsidized.

Getting scary

"What's getting scary is that he's getting big. The (violent) crises ... I can't do it anymore and having (the specialized educator) here, at least we were two or three people on him," she said. 

Jean and her husband Gianni hope that the Quebec government acts on their pleas for help.

Either way, she says, they'll never put their son in an institution again.

Paying for the specialized educator would be a fraction of the cost – and Zachary would be at home, where the whole family is happier.