At a dark time, bringing light

Sue Robins remembers what it was like to learn her son Aaron had Down syndrome shortly after his birth.

“We didn’t reach out to anybody. I remember lying in bed and thinking I wouldn’t get out of bed again. I was never going to laugh again or have a sense of humour. All the joy in my life had been taken.”

Six years later, she knows what would have helped: connection with another parent of a child with Down syndrome – someone who understood how she felt and could impart a sense of hope for the future.

When Aaron was five months old, Sue contacted the Edmonton Down Syndrome Society (EDSS). She asked to be connected with other moms of babies in the area and started an informal playgroup. Two years later, Sue co-founded the Visiting Parents Program at the EDSS.

Today, the volunteer program has 16 trained parents – including four dads – and has made 31 visits. The program is targeted to parents of a new baby with Down syndrome, but also serves parents who have received a prenatal diagnosis or who have a child with Down syndrome and are new to town.

I interviewed Sue about the program.

Me: What’s the purpose of visiting parents?

Sue Robins: To give information and support to parents who often feel very alone. Even at the time of birth, if there’s a question mark that the child may have Down syndrome, the parents are shuffled off to the private room at the end of the (maternity) hall, so right from the get-go they feel different. Our presence helps them know that they’re not alone. We want to celebrate the baby’s birth and sometimes that gets missed in the medical community, where the baby is looked at as a tragedy. We’re excited about meeting the new babies and holding them and for some parents that’s the first time that’s happened and it’s very powerful. We help normalize their experience.

Me: How does your program work?

Sue Robins: Most parents contact us by e-mail through our web site, but we also get calls from pediatricians’ offices, hospitals and genetics clinics. Within 24 to 48 hours we’re in touch by telephone. Sometimes a phone call is all parents need. If they’d like a visit, two of our parents will meet them where it’s convenient – in their home, the hospital, a coffee shop. We like to bring a gift. Depending on the family's needs, it may be a book of parent stories called Gifts: How Children With Down Syndrome Have Enriched Our Lives, or a more medically-oriented book. Sometimes we bring a baby blanket.

Me: What are the most common questions you get at visits?

Sue Robins: A big one is how is “how do I know how severe my child’s condition is?” We explain gently that there’s no way of knowing how your child will turn out, just like with any other child, it depends on a lot of factors. Many parents see the baby and not the Down syndrome, and they worry about when others will start to ‘see’ Down syndrome in their child. They want to known if people stare at the mall. Often there are concerns about how to tell friends and family. We let them know there’s no ‘right’ way to approach these things, it’s something many parents struggle with, and give them permission to figure it out in their own time. We share examples of what we and other families have done. Sometimes they want information on services.

Me: What can a parent offer that a professional can’t?

Sue Robins: We’ve walked down the same path these parents are on and a lot of what we impart is hope. We value and feel there’s worth in our children and we model that. We demonstrate that life goes on. We complement the role of health professionals by providing the human piece. Only we know what it’s like to have kids with Down syndrome.

Me: Are there key things you try to convey in your visits?

Sue Robins: We don’t want to talk too much. We want to listen and to be open and non-judgmental. Parents can be totally honest with us. We’re there to answer questions. We want them to know they’re not alone, that they’re well supported with services in Alberta, and we like to give them a little glimpse into the future, if they’re open to that. We bring a little photo album of our kids and leave it on the table. If they want to look at it they can, but they don’t have to.

Me: What kind of impact do you have on parents?

Sue Robins: I hope we lighten their load. I remember one visit we did in a hospital NICU where the father of the baby left after learning the baby had Down syndrome. When we first met the mom, things were really heavy and sad. One of us was cuddling the baby and at the end of the visit, the mom had a good cry – and we cried a bit too. We say it’s okay to cry. The social worker later told me that when the mom walked out of the room with us, she looked lighter, she acted lighter. We had helped take some of that burden off her.

Me: What do you get out of visiting new parents?

Sue Robins: I’d love for every single parent to feel supported. Part of my healing process is to ensure that my experience of feeling alone at the beginning isn’t what others experience. That’s very rewarding to me.

Me: How did you start the program?

Sue Robins: Another mother and I went to Calgary to hear about a visiting parents program there. On our drive back, we decided we wanted to bring the idea to Edmonton. So we brought a trainer from the Canadian Down Syndrome Society to run a six-hour workshop with the first eight parents on our team. We wanted to have a formal program where everyone on the team is trained. Professionals have to believe we’re competent in order for it to work.

Me: Are programs like this offered across the country?

Sue Robins: Not consistently. Most support groups do some sort of visiting but it’s informal. We’d love to share what we’ve learned with others who are interested in setting up formal programs. We have lots of resources.

Sue can be reached at sue.robins@shaw.ca. She’s speaking on the Visiting Parents Program at the World Down Syndrome Congress in Dublin this summer.