Video transcript

Professor Martin Delatycki (Director, Clinical Genetics at Austin Health, and paediatrician): Following the newborn period, children with Down syndrome should be under the care of a paediatrician. They will enlist the services of early intervention programs, and usually families will come into contact with physiotherapists, occupational therapists and sometimes speech therapists, to deal with the various issues.

Lynn Bailey (Parent Support Coordinator, Down Syndrome NSW): The goal of early intervention is for them to teach you to teach your child. Usually in early intervention, there’s a physiotherapist, a special education teacher, occupational therapist, speech therapist. And you access those as your child needs them.

Dona (mother of 5 children, 1 with Down syndrome): When Charlie first started, he was probably about 6 weeks old, so it’s kind of very young to be doing much, but the physiotherapist tried to work with him, just in terms of having him spend some time on his tummy and things like that. So, building up to ... trying to increase his strength in his body, because with Down syndrome, they’re known for being low muscle tone.

Kati (mother of 3 children, 1 with Down syndrome): Taylor, as a 7½-year-old, is struggling to speak. He has, if I had to pick a number, probably about 50 words that he says really clearly. He signs, however, magnificently. He can sign about 500 words. So he can communicate.

Dona: From the time he was 2, we started other, private speech therapy. He’s at the stage where he works to try and communicate – verbally, as well as sign language. So we did a couple of sign language classes as well with him. So that he wasn’t frustrated when we weren’t able to understand some of the things he would say.

Kati: We were blessed to be given a couple of fabulous therapists – one of which still works with Taylor today. They all knew a lot more than just their field. So the speech therapist would be talking to me about physiotherapy and vice versa. They knew resources out there. And they were committed.

Lynn: Having a lot of positive support around you as a family is a really good thing. So, having supportive grandparents, and making sure they are hearing the same accurate information as you. If you can, if you’re up to it, to ring your association and speak to someone on the other end of the phone, who will be another parent, and someone who has walked in your shoes.

Kati: We have a good team of support now. I still use therapists. We receive respite, which was a hard decision to follow that through, because he’s still young – he’s 7½ – and I would generally think twice about putting any young child with a stranger. But once I talked to some people who had kids who were much older, with Down syndrome, and they had said – start them younger, it’s better for them, and it’s better for you. So I thought, I’ll go with the wisdom. And I’m really glad I did. The respite is a good break – not just for myself, it’s a good break for Taylor, where it’s just about him now that he has 2 siblings, and it’s also a good break for the 2 little boys, and they get some time with me.

Lynn: One of the things that worked for me when my daughter was little was being in touch with other families, other mothers in particular. I got a tremendous amount of information from them.

Kati: I also have an informal, but no less supportive, network of fellow mums. Each of us are able to tell each other, ‘Well, I’ve heard about this. I’ve heard of this respite agency that’s now come online to offer vacation care, or to offer after school care’ – this kind of thing. Or even babysitters, we share babysitters. We have a team of babysitters that we share between us because we’ve trained them up. They can actually handle our kids. They don’t mind that the kids are older, and some of them aren’t toilet trained. There were people who just started dropping into our life when they heard we had this diagnosis, who had either dealt with kids with Down syndrome, or who actually had kids with Down syndrome. Gradually that started to build us up.

Lynn: When I visit a new family, I’ll often take a little family booklet of things that we’ve done over our family’s life. Things like going on skiing trips and family weddings and all those sort of things, so families can see that we have done things like every other family. And the fact that my daughter has Down syndrome has probably benefited our family in amazing ways rather than being something that’s prevented us from doing anything.

Martin: It’s very important for children with Down syndrome, as for any child, to have an active and full life, to be involved in family activities, to go to school, to have interaction with other children. These are all just as important for a child who has Down syndrome as for any other child. Children with Down syndrome usually attend regular schools, with extra help, but sometimes attend special schools. This is very much dependent on services available locally and the decisions of parents and teachers and paediatricians who look at these issues.

Dona: We had looked around at different possibilities for Charlie, looking into school. But when we went to Clarke Road, I just got such a good feeling about that school and what they would do for children. And the children were sitting there and they were all working and they were all very happy. At the time, one of the teachers who was showing us around, she brought us back to the office and I remember she turned to Mark and I and she said, ‘You know, the teachers at this school really want to be here’. I just got goosebumps, because I thought, ‘Yeah, that’s the feeling I got’. And so, from there, we knew that we wanted Charlie to go to that school.