Our son has Down syndrome

When a child is diagnosed with Down syndrome, the parents' first reaction is nearly always one of shock, and then one of great sadness. But the reality of living with Down syndrome can be quite different, as our interview with Jill O'Connor - the mother of an 18 year-old with Down syndrome  shows. Here Jill tells us about day-to-day life with Declan.

(First published by ninemsn  for Down Syndrome Awareness Week, October 2004)

Tell us a little bit about Declan
Our son Declan is nearly 19 - I can't believe how quickly those years have flown. He will finish school at the end of this year, and is keen to begin working. He has talked about having a job since he was very young. That was what school was about for Declan - what you do until you are grown up enough to get a job! His school has done a fine job of helping to prepare him for life after school, including various work and community experiences, and he is well on the way to developing the skills he will need to hold down a job as part of his adult life. We are looking into opportunities to provide more supports and preparation for that big step, that are available for school leavers with disabilities. It is the beginning of a major change in our lives, and we are looking forward to it.

How did you feel when you found out that Declan had Down syndrome?
It was very unexpected news, as it is for most parents, we were totally unprepared, and what we thought we knew about Down syndrome, which was not very much, did not make us welcome it. It almost felt like a physical blow. We had a lovely little baby, who came with a very big and very scary label.

How did you find out? Did you know before Declan was born?
It was recognised right at birth, and we were told by the paediatrician about three hours afterwards, since we hadn't picked up any signs for ourselves! Giving us the news was very hard for the doctors, and in 1985, I don't think they were as well prepared to do it as they might be now. But we had wonderful support from family and friends, and from the maternity unit nurses right away. We had briefly canvassed prenatal testing, but I was just below the age at which it was considered advisable, so we were happy not to give it another thought. I'm very glad now that I did not have to wrestle with the huge dilemmas that knowing before Declan'sbirth might have raised for us. We were able to fall in love with him as a very real little person while we rode the emotional rollercoaster of our reactions to his diagnosis.

Tell us a little bit about what Declan loves doing ..... What's the drill for a normal day? Does he go to school?
Declan is a very easygoing young man, with great social skills, and excellent health, so our lives are pretty ordinary - the adaptations we have had to make have been fairly straightforward, but very necessary.

If we told you about him without you knowing that he has Down syndrome, he would sound pretty much like many other 18 year-olds, although you would recognise it as soon as you saw his gorgeous face. He is very funny - has a delightful sense of humour.

He is in Year 12, travels to school and home again by bus, plays sport three or four times a week, loves movies and head-bangingly loud music, likes to hang out with his friends, is too fond of junk food, is looking forward to having a girlfriend, leaving school and getting a job. He's trying to develop a liking for beer, now that he is18. He loves football, and supports whichever team is winning.

His room is a tip, he gets on very well with his sister (except for when they are fighting), thinks his parents are seriously old and embarrassing, and pretends to believe in Santa Claus. He plans to leave home in the future, but says he is not ready yet.

What sort of support or treatment have you received?
There is no treatment that will make the Down syndrome go away. However, we took Declan to early intervention from about eight weeks of age, and learned about the developmental process, and learned to appreciate and encourage every bit of progress he made. It gave us the confidence to relax as parents. We have kept a careful eye on his health, including his hearing and sight. He had a minor heart operation at 18 months. There are a number of health conditions for which he will always need to be monitored, but they are all things that are well known and treatable.

He has had special education support in NSW public schools throughout his schooling. The quality has varied, but overall he has had a very reasonable education.

He will continue to need support throughout his life, and we would certainly like to see more practical supports offered in the community, and by governments at every level. We will endeavour to provide him with the opportunities that he wants to live the adult life he wants, with the support he needs. People with disabilities are still marginalised in our community - we have come a long way, and we have a long way to go.

The most important thing for him has been growing up at home, with his family, being loved, encouraged and valued - being expected to fit in, and being supported when he needed it. He has responded to the opportunities that he's had by working very hard to achieve the things that are important to him, to live life to the full, and to milk it for all it's worth.

Are there any other families near you who have kids with Down syndrome?
People with Down syndrome are everywhere, and we have come to know many of them, some of them close by, some far away. We have met other families everywhere we have travelled. Our connections with other families raising children with Down syndrome have been a great support to us, and to Declan. It is not a club we elected to join, but who knew how good it could be? We have been very lucky - some families whose kids have Down syndrome face far greater challenges for all sorts of reasons, not all of them related to the Down syndrome. It is a fact of life for us, but it does not totally define our lives or Declan's.

And how have the rest of your family responded to having a member with Down syndrome?
Mostly they have been a wonderful support, and have fallen in love with him just as we did, although the diagnosis was a huge shock to them all as well. My parents and siblings were our greatest support from the early days, emotionally and practically. They have been willing to learn right along with us. His cousins in Australia are all teens or older, and include him in their activities. Declan is a very precious member of our extended family.

My husband's family are all overseas, and have taken a great interest in both of our children, keeping in regular touch We have visited his homeland twice since Declan's arrival, and his aunt and grandmother have both visited us - it would have been nice to be closer to them.

We think the family support we have enjoyed has been a key factor in enjoying Declan, and in regarding our lives as pretty ordinary. It is not like that for every family, and that can put a great strain on relationships and on individual parents and kids.

And finally, what do you love the most about your child?
Everything - every single chromosome. I would not change anything - unless he wanted to, and I don't know that he does. He seems to be comfortable in his skin.

I do admire that fact that he knows that he has an intellectual disability, and has some appreciation that it is not something the rest of us wish for. He faces many challenges in quite unremarkable, everyday activities. And yet every single day, he faces a world in which he has to work very hard to live an ordinary life - harder than we have ever had to - and he is prepared to put that effort in, every single day. We think he's a bit of a hero. He does more than just live - he lights up our world.