Nancy (mother of 3 children, 2 with disability): Your child doesn’t have a voice – you are his voice, or her voice. In Andrew’s case I have been his voice since I found out he has autism.
Leah (mother of 3 children, 1 with disability): Ivy has a vision impairment called microphthalmia. She was diagnosed at her 8-week paediatric appointment.
I’m Ivy’s advocate for now, until she can talk and tell everyone else what’s going on.
Nancy: I go on his behalf to organisations. I go on his behalf to the government. I go on his behalf to schools.
Fatima (mother of 2 children, 1 with disability): Once you get over the initial shock – and you’ve got to get over that first – you need to get out there and find all the resources that you can to actually help your child.
Associate Professor Jan Matthews (psychologist, Parenting Research Centre): Parents don’t often expect to find themselves in this role, but they do have a very important part to play in linking their child’s services together, keeping the communication flowing between them, finding out things that are going to benefit their child and their family in this journey.
Christine Cameron (psychologist, Parenting Research Centre): When you’re working with a range of professionals, really the role – or one of the roles – that you start to assume as a parent is managing, be a case manager for yourself if you like, managing the information from one professional in linking that with information from another professional. Ideally the professionals should be talking to each other and helping you do that. That doesn’t always happen, and so you become the person who filters the information, who puts it together and makes sure that it does meet all the needs that you and your family have.
Associate Professor Jan Matthews: It’s important for parents to know that you can speak up, you can be involved, you can ask the difficult questions, and you can expect good answers. You can persist until you receive those answers.
Shannon (father of 2 children, 1 with disability): There’s lots of information out there and lots of different specialists. I would suggest to find a paediatrician who’s best for you, the doctor who’s best for you – your child, I should say, actually – and who has a holistic approach to the whole family.
Fatima: I joined a Yahoo group with her particular condition and got a lot of information from people who were actually vision impaired, and also parents, and then I actually got on a plane and went to America to a conference, took her along and met families and other people and doctors and all that kind of stuff, and then when I came back I was ready to go ‘OK, this is what I need to do with her. This is what she possibly may have’.
Christine Cameron: One of the things that can be really helpful is always keeping a copy of any report you get. You can file it in a shoe box. You don’t have to have a sophisticated filing system but have one place where you put all the stuff that’s about your child, because you’re going to have to keep coming back and forth to that box of information, putting into that the name of the therapist you saw at whatever centre, or the name and date that you talked to somebody. You’re keeping a bit of a journal, if you like, about who it is you’re talking to, because you’ll find that you’re talking to lots of different people in different places.
Elizabeth McGarry (CEO, Association for Children with a Disability): When looking at determining what you might need and what your child might need, it’s important to look at or to think about your family, and what will also fit your family. So attending an early intervention centre 4 times a week might not fit in with all the other commitments that you have, so it’s important to say that in the early stages and to speak up about what would suit your family best, and then try and negotiate to get the best fit you can.
And really, professionals don’t know unless you tell them.
Nancy: There are organisations that support you if you, as a parent, feel like you’re not getting what you need for your child. You’re trying to get service, you’re trying to get funding but you’re not getting it. A good organisation that comes to my mind is VALID, where they do come with you to meetings that help you and support your child or your young adult in getting the services or the path that they need for their life.
Associate Professor Jan Matthews: It is possible with a child with a disability to find great enjoyment in your new role as parent of that child, and to find enjoyment in your life. In fact the research tells us this, that often parents find great fulfilment in being the parent of a child with a disability.