Helping families stay strong

8 May 2019

About one in eight families includes a person with disability.

While each family is unique, there are common challenges they all face when supporting someone with disability. We asked some mums, that attend a parent group held weekly at VMCH Disability Services in Kew, about what has helped them during the ups and downs of parenting.

Jeanne, mum to Elena, 2 (pictured above)

Tell us a bit about Elena?

Elena was diagnosed with Phelan-McDermid Syndrome in hospital in her first year. She was in and out of hospitals. She had heart surgery, seizures, chest infections and bronchitis. There were a lot of medical issues in that first year.

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. She is also making noises. Elena is very active and determined to get what she wants.

Why did you join this parents’ group?

I have been to different mother’s groups before and found it it quite difficult to fit in. You see kids Elena’s age that are doing things that she is not able to do yet.

What do you enjoy about meeting other parents who have a child with a disability?

It’s nice to be around mums who know what it’s like to have a child with special needs. It’s not a sad or bad thing. It’s nice for Elena to also see other kids with special needs.

What do you hope to get out of coming to the group?

I’d just like to make new friends. To make new mummy friends and for my daughter to make new friends too.

What advice would you have for parents whose child has recently been diagnosed with a disability?

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, mum to Caroline, 2

Tell us a bit about your family?

I am from Vietnam and moved to Australia in 2017. My daughter Caroline is 2 and was diagnosed with 22q (also known as Velocardiofacial syndrome) when she was one-month-old.

Five days after Caroline was born, she had a seizure and was in hospital in Vietnam for 8 months. After that, she was in and out of hospital. Now she’s much better. When Caroline gets sick we can mostly manage it at home.

Why did you join this group?

I took my daughter to a different playgroup previously. People asked a lot of questions about her and that made me feel uncomfortable.

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.

What do you enjoy about the group?

I can talk to other mums who have kids in a similar situation. You can feel free to talk and speak out. 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.

So this group is the perfect playgroup for us. People are really helpful. They give advice, they are friendly. We laugh.

Group facilitator Cara

What do you think the parents get out of coming together once a week?

I think it is vital for mental health of the parents. It can be very isolating having a child with a disability 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.

What advice would you give to parents whose child has recently been diagnosed with a disability?

I remember it being the hardest time. Often my advice to parents is that it is really tough and validate that. 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

Many families who use VMCH’s Early Learning and Therapy services also love coming together once a week for a catch up and a cuppa at its centre in Kew – just like Jeanne and Tram. They are pictured below with other mums and staff that support them.

MyTime is support for parents and carers of children with a disability, developmental delay or chronic medical condition. While parents attend the group, specialist educators provide a rich group experience for their pre-school children

It is a free to attend and funded by the Australian Government, Department of Social Services and VMCH.

It runs on Thursdays from 10-11.30am. For more information you can call 1300 698 624.

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Acknowledgement of Country

We here at VMCH respectfully acknowledge the traditional owners of the lands on which we gather, and we would like to take a moment to honour the fact that we live on the lands of the oldest civilisation in the world. We acknowledge the stories, traditions and wisdom of Aboriginal and Torres Straight Islander peoples, and pay our respects to their elders past, present and emerging.