Kati (mother of 3 children, 1 with disability): Some of the best help I have received in this whole journey of having a child with Down syndrome has been from fellow parents, who have been absolutely honest with me.
Associate Professor Jan Matthews (psychologist, Parenting Research Centre): When families receive a diagnosis, it’s often really helpful to talk to someone who has been through that journey or is going through it at the same time as they are, and there are peer support groups around that families can link in to. One example is MyTime, which is a peer support group nationally, for parents of young children with disabilities.
Elizabeth McGarry (CEO, Association for Children with a Disability): There’s lots of self-help groups around, and you need to go digging to find them. Often you’ll find them in a local community directory of activities and groups in your local area. But in most areas too, there are disability-specific organisations and groups, and it’s always good to make contact with them too.
Nicole (mother of 2 children, 1 with disability): As far as support goes for my husband and I, we have a fantastic family, who are very supportive of us. But family still sometimes isn’t enough, and definitely connecting with a group of people, whether it be through an organisation such as Cerebral Palsy Alliance or whether it be through school. It’s so vital to create relationships with people that understand, that are going through the exact same things. Because your family and friends, colleagues, they’re all going to have sympathy, but empathy is what you really need.
Sandra (mother of 3 children, 1 with disability): One of the things I really miss from early intervention, now that we’re in a mainstream school, is a parent support network. I think it’s really important. We often – you can talk to other parents about parenting stuff, but when it comes to hearing loss stuff it’s just nice to have other parents that understand. So I’m in the process of getting things ready to get local families together. Introduce ourselves and particularly those kids that are growing up in the mainstream setting. So that the kids can have some more friends that are facing the same issues. As well as parent support.
Nicole: I’ve got a great group of friends through my son’s school, which we’re all so vital to each other’s existence and sanity. Because there can be times when we all have a good laugh about our kids and something funny that they’ve done. Other times we have a cry. And you don’t have to explain yourself. You don’t have to make excuses, or even talk. It’s just being around people that understand it. So you know, having a child with special needs is not only emotionally, can be emotionally draining on yourself. It can have impacts on your relationships within your family, within your marriage. So it’s great to have an outlet with people who get that. We couldn’t live without that. It’s fantastic to have one another.
Kati: Each of us then are able to tell each other, well, I’ve heard about this, I’ve heard of this respite agency has now come online to offer vacation care or to offer after school care, this kind of thing. So – or even to recommend – we share babysitters. We have a team of babysitters that we share between us because we’ve trained them up. They can actually handle the kids. They don’t mind that the kids are older and some of them aren’t toilet trained.
Mike (father of 2 children, 1 with disability): If you talk to parents who have older children, you often find out information that you don’t have. So other parents are a really, really important source of information. They’re a really great source of support as well.
Sandra: I know that I have gathered a lot of information that other people perhaps might not have. They may have information that I don’t have. And I think the more that we can share it and help people to work their way through this process, the better that it is.