The Role of Antenatal Coffee Groups When A Member Has A Special Needs Child

I look back on the cold evenings I attended antenatal classes with largely happy memories. We were all in the same boat and pretty excited to be in it and looked forward to each new arrival at the weekly coffee groups. Unfortunately, for a couple of us in our group, the new arrivals were not what we expected. My baby was born with Down Syndrome despite having been given a low risk nuchal fold scan result. It was simultaneously the best and worst day of our lives. Many readers have no doubt read articles from women and men who have gone through this experience and the shock it brings. However something I have never seen as yet, including in the Parent Centre magazine, is the role of the antenatal/coffee group when something goes wrong for one of its members. Obviously, I don’t speak for everyone who have had experiences similar to mine, be it Down Syndrome or any other baby with special needs. The words below are my own opinion – but I hope this article will give people something to think about.

In my own experience, I believe there is a role for antenatal groups in the overall support network a mother of a special needs child must necessarily build for herself. Admittedly, one of the hardest things I have had to do in my life was turn up at one of our coffee mornings with my small and outwardly different baby and place her beside a line up of spectacularly healthy, large, and ‘normal’ babies and their joyful mums. At first, each session was hard work. But now I consider my antenatal group to be an integral part of my support network, which includes friends, family and the Down Syndrome Association. I enjoy going to coffee groups now and watch my baby develop with her friends. In fact, I find some comfort in knowing that she will belong to a group of kids and mums who have known her from day one and have seen her so often that to them, she is a child first and has Down Syndrome second. I have a group of mums who cheer on my daughter when she achieves milestones. Unlike other situations, I don’t have to explain anything to this group – they all know our story and we are just part of the group and there is a lot of comfort in that. Down the track, when the kids are older, they will accept my daughter without question. In fact, there is something to be said for children to grow up knowing from day one that there are children in the world who will do things a bit differently or look a bit different and that they must be accepted.

But it did take quite a long time for me to get to this position. It was (and admittedly sometimes still is) hard to listen to other mums talk about various difficulties without wanting to point out that I would have happily taken on that difficulty if it meant my child did not have Down Syndrome. It was hard to see how much the mums were enjoying their healthy babies. But I don’t want these mums to feel they can’t be themselves when my daughter and I are in the room. I have overcome my reluctance to remain part of our coffee group – partly through my own accepting of my baby but in large part through the actions of my antenatal group. Our group is not the first and will not be last where a baby with special needs is born. I think it is important therefore for each group to consider their roles should this happen. My personal suggestions in this situation would be:

Arrange for someone to contact the mother and congratulate them on the birth of her baby (after all, a baby was born).
If you don’t know what to say, then say “I don’t know what to say”. It’s better than silence. Two types of people stand out for me during the difficult days – those who contacted us to say something and those who said nothing at all.
Ascertain how the mother feels about joining group activities and if the group can be of support in any way.
Ensure that the mother is sent all coffee group emails about upcoming meetings. She will choose whether she is ready to attend or not.
Have perhaps one or two of you visit the mother. It’s easier than having to face the whole lineup and gives the mother a chance to describe her experiences to a small audience rather than the group.
Read all you can about the condition the baby has and if you have questions, ask the mother if you can ask them.
Treat the mother and baby as normally as possible. Comment on what the baby is doing as you would other babies. Ask the mother about routine experiences such as sleeping, feeding, changing etc because she is going through this too.
Ask the mother whether there is anything you should do when interacting with her baby (such as sign language, extra head support etc) and do not shy away from picking up the baby if the mother is comfortable with this

Maria Borshevsky
Lower Hutt