It’s World Down Syndrome Day this week, and Hayley Goleniowska of the multi award-winning Downs Side Up joins us with advice for new parents of babies with Down’s Syndrome
Congratulations on the birth of your beautiful new baby and welcome to the world little one.
As Dr Seuss wisely said, “Oh, the places you’ll go!”
I know that it might not feel that way right now, that you might be working through a difficult early phase.
I understand, because just over ten years ago I was pregnant for the second time and wondering what our baby would be like. Would she have light or dark hair, be a professional artist or a science geek?
I’m ashamed to say that I was knocked off course by the shock news that Natalia has Down’s syndrome a few hours after she was born. Oh, how I wish I could go back and re-live those precious fleeting newborn moments with the wisdom of hindsight, knowing what I know now, knowing that our family would be wonderful, perfect, complete.
It was natural to picture the child we were expecting I suppose, but we should have waited until we had met her, until she could show us her unique individualities. None of us wants to feel that we don’t match expectations.
This is never more true than when you are told your baby has a genetic condition. Down’s syndrome, was not something I had built into my imagined newborn, and was something I recall feeling that I hadn’t signed up for.
Our daughter Natalia was a beautiful, yet vulnerable newborn. She required some extra support of course, but essentially she needed all the same things as any other baby: feeding, changing, keeping warm and safe. And our unconditional love.
Some say that to reach a point of acceptance feels like grieving that baby you were expecting. It happened when I realised that our new baby was completely unaware of
any stigma attached to her extra chromosome. It was my personal issue to work through, not hers.
Practical Tips to Welcome the New Baby
Congratulate and celebrate
It’s important for friends and family to congratulate the new parents on their arrival. Send cards and gifts, consider cooking a meal for them, open some champagne. If a baby is spending time in neo-natal care, you can purchase a practical gift such as travel toiletries or a pretty cool bag to make their time in hospital more comfortable.
Friends and family must also acknowledge the shock the family may be feeling, and offer support. Over-optimism can sound flippant and patronising, so take time to listen to their fears and worries and offer to be there for them.
Similarly different generations within a family might have varying levels of understanding about what Down’s syndrome means. It’s important to listen to everyone, and gently re-educate to bust a few myths if necessary.
Be Gentle on Yourself
Likewise as a new parent don’t be too hard on yourself. Accept that you are going through a period of adjustment and that this is bound to throw up lots of confusing emotions. You are not alone, we’ve all travelled this path.
Be open and honest and talk to others about your feelings.
Avoid outdated language and clichés
This new little baby is going to be more like their own family than any other child with the condition. They will share their beliefs, traditions and look similar. Down’s syndrome
is just one part of that wonderful person. Try to avoid stereotypes when talking about them.
Natalia is a well-rounded individual who experiences all the same moods and emotions as her sister. She makes choices about the hobbies she enjoys and there is certainly a lot more to her than simply being ‘musical and loving’.
Accept Your Baby for Who They Are
Learn what makes your baby giggle, what kind of activities he or she enjoys and how they learn best.
Whilst it is important to give your baby lots of stimulating activities such as singing and sharing books, pictures and attending baby groups, don’t view your child as a project. It’s easy to spend so much time on flash cards that you forget to simply enjoy time together.
It’s important to find the right support for you and your family. You might want to join a local support group and meet other families, or you might prefer to read blogs or join online support forums.
I found play groups and baby yoga a great excuse to get out and meet others. Natty was just a part of the gang and she benefitted greatly from being fully immersed into all the same activities as her peers. Just popping round to others parents’ houses for coffee was a godsend in the early days when it was easy to feel isolated.
It’s really difficult to carve out time when you have a newborn but try to take a walk, enjoy a bath. Breath some fresh air, drink more water and eat healthily to keep yourself well.
And most of all take your baby’s lead, for they will be your best teacher ever. Your journey might not be what you had planned, but I guarantee you will not regret one second of it.