Not just parenting – building a family unit

Sibling relationships can be difficult to manage for any family; however there are extra challenges when one of your child has disability. Despite the challenges, siblings often share a special connection, which can play a big part in each other’s development. We talked to Venessa and Dean, whose first child Vivienne was diagnosed with Angelman Syndrome.

Vanessa and Dean knew having two children was going to be a handful.

Basil now 15 months is two years younger to his sister Vivienne. Vanessa says Basil’s first year was the toughest they’ve experienced.

“Vivienne was extremely jealous and spent the first year hitting and pulling his hair all day long. It was so stressful, it absolutely drove me crazy,” she says.

“However, things have started to change and I have seen the beginnings of a relationship. There is still some hitting and hair pulling, but I’ve also seen some hugging, which is a big deal,” she adds with a smile.

Vanessa says they are starting to see Basil and Vivienne learn from one another. Vivienne uses Key Word Sign to communicate and Basil has begun to pick it up as well.

“Basil is pretty switched on so he has started signing, which helps Vivienne with her communication. Because he chats all day long, Vivienne vocalises more too,” she says.

“Basil is also very confident so he can also bring her out of her shell in new situations. He has been wonderful for her.”

Vanessa and Dean nurture their relationships as a family and always take time out to have some fun together and enjoy each other’s company.

“We make sure that we go and do something fun with the kids at least every second weekend,” she says.

“As a family we talk – a lot – and make sure we are having fun with each other, even if we are just hanging around the house.”

Taking time out as parents

For any parent, looking after yourself is critical. Neglecting your own needs and wellbeing is a surefire way to exhaustion. Although Vanessa hasn’t always found it easy to do so, she is getting better at looking after herself.

“I now have one day a week to myself so that I can pursue things I want for myself and the family, without feeling depressed and overwhelmed,” she says.

As well as making time for herself, Vanessa says she and Dean have found it helpful to maintain routines in their relationship. This helps reduce stress and set aside some quality time together.

“Dean and I try to make our home life as happy and harmonious as possible. We talk and laugh a lot and spend each night debriefing about our day. It’s stressful enough as it is with two little kids, so it’s important we get any problems off our chest if they arise.”

Being open to the positives

Raising a child with disability is a journey that comes with lots of challenges, but there are some real positives through this.

“Vivienne surprises us all the time with what she can do so I have learned to always have open expectations. Her diagnosis isn’t a finite set of abilities. She is her own person and we are all learning along the way.”

“The biggest surprise is how our life has changed for the better. That may sound weird, but I feel like we are all challenged to be better people; be more open, more compassionate, more present and grateful.”