Mothers provide endless love and support throughout our lives and some Victorian mothers of children with disability have shared their experience and some helpful advice in light of Mother's Day.
Jeanne and Tram both access VMCH’s early learning and therapy services and attend VMCH’s weekly parent support group, MyTime in Kew, Victoria.
Jeanne shares the challenges of raising her two year old daughter Elena who has Phelan-McDermid syndrome, a rare genetic condition and had heart surgery, seizures, chest infections and bronchitis in her first year.
“There were a lot of medical issues in that first year,” she explains.
“These days Elena is doing really well. She has global development delays, but she is progressing at her own pace.
“Elena has learnt how to crawl, stand and sit and she is also making noises.”
Jeanne says she has been to a number of different mothers groups but found it difficult to fit in.
“It’s nice to be around mums who know what it’s like to have a child with special needs and it’s nice for Elena to also see other kids with special needs.”
Jeanne is looking forward to making friends with other mothers and Elena with other children too.
“When my daughter was first diagnosed it was really hard and finding support is really important. Finding a support group for my daughter’s diagnosis has helped so much.”
Tram moved from Vietnam to Australia in 2017 with her now two year old daughter Caroline, who has Velocardiofacial syndrome, a genetic condition affecting the development of the parathyroid glands, thymus, and conotruncal region of the heart and says she often felt uncomfortable at other playgroups.
“Some people they are really curious. I know they don’t mean any harm, but when they keep asking I don’t feel comfortable sharing with them and I worry they wouldn’t understand.”
She says the VMCH group has allowed her to speak out, give and receive advice and share her experience with parents in similar situations.
“I look at them and I see how motivated they are, how friendly they are.
“I have learnt from them and I feel it’s a positive atmosphere and we can share with each other.
“When we talk to people we can learn new things and we can feel that we’re not alone on our own planet,” Tram says.
VMCH Group Facilitator, Cara considers the parent support group vital for the mental health of the parents.
“It can be very isolating having a child with a disability,” she says.
“There are demands of having to access different services and it can be a very lonely experience.
“So, to have other parents in the same boat where everything is not going smoothly can help.”
She hopes parents feel empowered by attending the weekly catch up.
“You can’t fix everything, but I hope we can instil a bit of confidence, advocacy skills- to be your child’s best advocate.
“Take baby steps. Don’t start worrying about things like is my child going to be able to drive when they are 18 or get a job? Everything works out along the way and you become more resilient.”
MyTime is a support group for parents and carers of children with a disability, developmental delay or chronic medical condition, where specialist educators provide a rich group experience for preschool-aged children.
The group runs every Thursday from 10am-11.30am in Kew and is free to attend, thanks to funding by VMCH and the Australian Government’s Department of Social Services.
For more information on MyTime or VMCH’s disability support services, you can call 03 855 7850.