Carers appreciate MyTime and a break from 'very full-on kids'

CATCHING up with friends over coffee provides stress relief for any parent, but for parents or carers of children with special needs or chronic health conditions meeting up with those in similar situations is an added lifeline.

Serenity Clarke, Tammy Kirby and Kelly Gleeson have been part of the five-member carers’ support group MyTime for just over two years and the three mums can’t praise the concept enough.

Each month the group meets informally at the Celebral Palsy Alliance in Prince Street while a play helper keeps their children busy in the room next door.

“I heard that someone watched the kids while I had a cuppa for two whole hours and I thought, ‘I’m there’,” Ms Clarke said of when she first heard about the group.

She has three children, two with disabilities.

Maddie, 6, has development delays caused by velocardiofacial syndrome, giving her high anxiety and making school a challenge.

“She was very slow to reach all her milestones and her speech came slow,” Ms Clarke said.

Four-year-old sister Willow has progressive osseous heteroplasia, meaning her soft tissue is slowly turning to bone and affecting her right arm.

“For me going to the group when they were small was timeout because they are very full-on kids,” she said.

“At the moment it’s pretty cruisy so it’s more for what their future is going to hold.”

Ms Kirby agreed the future can be a daunting prospect for parents of children with disabilities, especially finding the right help and choosing schools.

Two of her three children, twins Paige and Alexander, 7, were born premature.

They have development delays that affect their communication.

“The group has other mums in different situations,” she said.

“It also makes you aware there are places you can turn to. The next group meeting will have a representative from the Department of Education which for me is beneficial.” 

Mother of two Ms Gleeson agrees.

Her son Josh, 4, has cerebral palsy and significant intellectual disabilities caused by global delays, which won’t be diagnosed until he starts school.

“He’s growing bigger but his comprehension is that of a two-year-old at best,” she said.

“Even if there’s a pot of boiling water he doesn’t understand if he pulled it off it would hurt him and burn him.”

Ms Gleeson looks forward to the group’s monthly meeting as a place to find support, access services and learn from the experiences of others.

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