Love, joy and worry – the essence of having a child with Down syndrome

““I think that my son’s life speaks for itself”

Alison Preston hopes that one day she will meet Peter Singer at a picnic or a park and be able to challenge the philosopher who doubts the quality of life of people with Down syndrome with the evidence of how wrong he is.

Alison has engaged with the utilitarian ideas of the ethicist who believes foetuses with Down syndrome should be aborted because she decided to go ahead and give birth to her son Ethan, who is now 3½ years old.

“I think that my son’s life speaks for itself as does our life as a family, and I’d invite anyone who really wonders whether someone with Down syndrome has a quality of life to spend an hour with our family or any other household really – I’d welcome that,” she says.

“I’m not going to shy away from the challenges, but the essence of our lives is love and joy.”

Ethan and Audrey

Speaking to Eternity to mark World Down Syndrome Day, which fell on March 21, Alison said it was a special opportunity for the global Down syndrome community to remind everyone they know “how much we love our person who happens to have Down syndrome.”

“On Sunday we were at the Werribee Zoo in Victoria, gathered as a Down syndrome community and it was a wonderful day of music and fun and being together,” she said.

“As Ethan gets older, I can see more and more that to know him is to love him.”

While the day was primarily about encouraging the Down syndrome community, a lot of her friends were surprised and delighted with the way their school or preschool had made an effort to make it a joyful, fun day.

“And so while it is an important day for us as families, sometimes there are great ways that the day creates a conversation that might otherwise be awkward to have. And it was so lovely to see how many of my friends were posting about the effort that their communities were making to show how much they also love their person with Down syndrome,” she said.

“That’s something that as Ethan gets older, I can see more and more that to know him is to love him. And, as long as you know him, the fear and the prejudice essentially fall away because you realise he’s a little boy who loves blueberries and dinosaurs and going to the park and playing on the beach, like any three-year-old little boy. And part of the huge challenge in Australian society is how to break through the ableism that exists and break through that fear in many ways. But I think that people with Down syndrome speak for themselves.”

Audrey and Ethan

While Ethan has suffered a long list of health challenges, he is a cheeky and joyful little boy and a highly motivated learner, she adds.

It’s clear from family photos that Alison’s three older children – Eleanor, 13, Audrey, 10, and Harry, 8 – have adored Ethan from when he was a tiny baby, who spent months in intensive care having treatment for bowel and heart conditions.

“They adore him and he makes us laugh every day.”

For Alison, their love for their baby brother was important because one of the things people were worried about when she was pregnant was the effect he would have on his siblings.

“Of course, I couldn’t help thinking about it too. How is this going to impact on his siblings? And he’s such a joy for them. They adore him and he makes us laugh every day and I’m very proud of my children in the way they just accept that he is who he is,” she says.

Ethan with his siblings Eleanor, 13, Audrey, 10, and Harry, 8

At the gathering on Sunday, her kids could see each person for the unique human being they are, she says, adding that’s how she wants to be raising her children.

“You know, there were hard times. He spent months in ICU, so I couldn’t be as present for them during that time. There’s no sugar-coating that, but my husband, their dad, was incredibly supportive of them and engaged with them and invested a lot of time in keeping them stable.

“I’m thankful for that, but also now they’re flourishing as well. And I would say that their lives are richer from having the brother that they have. And so are their friends, because their friends are all learning through my children too.”

“I would say that their lives are richer from having the brother that they have.”

When her older children ask if they can have another baby, they say they would prefer to have one like Ethan, she says.

“I said, ‘Oh, we’re not having another child but maybe one day we’ll think about fostering a child.’ And they said, ‘Oh, can we have one another one like Ethan?’. I tell you it honestly warms my heart that they themselves would love to have another sibling with Down syndrome. That’s their preference.”

Alison confesses that she went through a period of grieving after finding out early in her pregnancy that her fourth baby was likely to have Down syndrome. As she said goodbye to the baby she had imagined coming into the family, she experienced a deep sense of peace after prayer and reflection.

She explains: “I felt very strongly at the time when I had the prenatal diagnosis – and I feel now – that it would not sit with my conscience to not continue because I knew he had a disability and that actually the decision to not continue would break me and it would probably break my marriage as well. And I had a very clear conviction of what I wanted to do and what I should do, and a deep sense of peace around that. I’m thankful that I had the clarity and the peace. My whole life has been framed around recognising each person is being made in the image of God, whoever they are. So it was encouraging and affirming that when I was faced with a challenging situation, it turned out I did really believe that.”

“The decision to not continue would break me and it would probably break my marriage as well.”

Recently, Alison has felt a similar sense of conviction and peace around her decision to take a break from her career, in international aid and development, to concentrate on preparing Ethan to start kindergarten next year. She is working intensively with an array of allied health professionals to develop his speech, balance and coordination, among other things.

Eleanor and Audrey with Ethan on the beach

She says the chief challenge of having a child with Down syndrome is the worry about their future, how they will fare in employment and whether they will be accepted or exploited.

“Wondering about the future of your child who has a disability does sometimes weigh heavy. And so I’m doing everything I can to enable him to flourish now to set him up for a great future,” she says.

“Yes, there are societal issues that will make his life more challenging, whether it’s secure employment or being accepted in community life. I feel fortunate in that he’s being raised in a church community that loves him. And I feel confident that in the future, there will be Christian communities that welcome him, love him, and appreciate who he is.

“These days sporting groups and others are making real progress in accepting people with diverse abilities, but I think there are very significant barriers for people with intellectual disabilities, gaining employment, meaningful work, and fair pay for their efforts.”

“I’m doing everything I can to enable him to flourish now to set him up for a great future.”

She notes the reality that there are also very high rates of sexual abuse of people with intellectual disabilities, so she feels a responsibility to make sure that Ethan can speak up for himself if he’s in a situation where he feels threatened.

“His speech is emerging and it’s so lovely to hear him communicating. He uses a combination of sign and verbal communication. He’s a very proactive communicator and I am confident he will be a strong verbal communicator one day, but it is definitely delayed … and I’m very invested in making sure he has the skills and the confidence and the sense of self to be able to say if something’s wrong.”

While Alison misses being in a workplace environment, she had “absolute peace and clarity” about her decision to step away for a time.

“I’m continuing on a board of an international aid agency called Act for Peace, the National Council of Churches aid and development agency. And I’m also involved with Down Syndrome Victoria and a number of other initiatives. But I really felt convicted that full-time investment in Ethan now, before he goes to school, would bear a great deal of fruit for myself, my husband, and our children in the future.

“Of course, I’m looking forward to working again, but I suspect that I’m going to take a bit of a change in direction professionally as I learn more and more about disability and the justice and advocacy issues related to disability.”