So your friend or family member has just had a baby, who just so happens to have Down Syndrome… You take the initial gulp of emotion and shock… so now what do you do or say?

This might sound scary but the moment you hear the words ‘he/she has Down Syndrome’ the response you give can be the make or break of your friendship with the parents. They need to hear, and have, all the support they possibly can without all the patronising comments and endless questions. Remember they have just had this heart breaking news to take in themselves, they may not know all the answers just yet and they may not have thought of the questions you are asking. Your heartfelt and inquisitive questions and reactions, however innocent, can cause even more distress to the parents if they haven’t had time to think of what you are asking yet. It will just add to a list of scary thoughts going through their minds. So just smile and when you’re home…. ask Google!

• Your response
• Don’t be selfish
• Congratulate them as normal
• Wise words
• Think about wording
• Don’t forget Dad!
• Giving the parents advice

Your response

Okay so most people will respond in one of these ways to start with and nobody will hold that against you… a mixture of disbelief, shock, fear, stunned silence, panic, anger, hurt, disappointment, a desire to fix things or maybe misunderstanding what it really means.
This is normal! Do not feel guilty about your feelings. You are watching someone you love go through something that is completely out of your control – this is difficult for everyone. My only advice to you is try to put all that on a back burner and take a deep breath, there will be time to cry after you leave the room. After all their child is not dead, you still have a beautiful new baby to celebrate and they may need reassuring that people will take this baby in their arms as just that… a baby! Not a disappointment or burden or a problem… a beautiful new addition to their family.

Everyone is different though, and this is all the more exaggerated at this time. Whatever thoughts and emotions you have, the parents will have already experienced them ten times over. Just remember that they are still the same people you knew hours before their news broke. Deal with them in a way you would deal with them normally, just with a little more understanding and a little tact.

RELATED ARTICLE: A parent’s point of view on down’s syndrome: 3rd July 2012

Don’t be selfish

They may not want company for a while so they can soak up the news, the emotions and the endless information they are given by the medical staff. Don’t be offended by this. However close you may be to the couple, grandparents this includes you, they need to deal with things in their way and in their own time. They will be able to deal with people better if they understand what has just happened to their lives a little bit more themselves.

Congratulate them as normal

This is a happy occasion! He or she is just a baby at the end of the day no matter how many problems they may have in the future. When anyone else has a baby you say ‘oooo’ and ‘ahhh’ and all those other cooing noises we tend to make. We take flowers and presents and we congratulate them whilst cuddling the new beautiful bundle of joy. We ask the questions, weight, height, time, name etc. Acting as normal as possible is the key. Do it! But do think about what they may have to deal with on top of the norm too. Baby may have to stay in hospital for a while so maybe a care package for the parents, food, toiletries etc. Even the offer to have their other children for the day or night might be a weight off their mind and much more helpful than the umpteenth teddy bear they will receive.

Wise words

You need to remember that the parents are grieving. Their ‘healthy baby’ thoughts that they’ve had for the past 9 months, now seemingly have gone in the bin. Grieving is a harsh word, but it is just that. I remember thinking ‘well he won’t be able to do that now’ and this was the worst feeling I had at the time and that time lasted for weeks. Kind words whilst grieving can be the be all and end all. What you say may be of great help or it may be the last straw and the simplest thing might hurt more now than you’d ever have thought. Some brilliant and simple phrases you can use include: ‘He/she is so beautiful, doesn’t he/she look like….’ ‘As hard as it may be, we are here to help whenever you need us but I reckon you’ll cope just fine’ ‘I can’t imagine how you feel but I am here to listen and try to understand as best I can’ ‘He/she is looking cheekier everyday’… this type of thing is lovely, really normal and not that patronising at all, so is a winner.

Think about wording

Wording your phrases is key too. Please remember this. Learn what is and what isn’t politically correct. Some things that are general phrases you’ve used for years are hurtful to parents, especially new parents as they need to know that ignorance is at a minimum amongst the people around them. There are certain words that people often overlook as ‘general phrases’. These may offend, so just be careful until the parents are clear as to what they do and don’t find offensive. I have had a few run-ins with the older generation, who have no understanding of the new vocabulary of these things. They don’t mean any harm so you learn to smile and nod, but if this is coming out of the mouths of loved ones you are not so lovely in your response.

Don’t forget Dad!

Dads often get overlooked on these occasions. Make sure you support dad and offer an ear to him too. Men try to hide their disappointment and they try to be the backbone for the mum and the whole family but they struggle just as much as we do, it’s just often they do it in silence. A few beers down the pub with his mates and some normality may be all he needs. Maybe offer to babysit older children and keep mum company so he can have some time out.

Giving the parents advice

Okay so we all have their best interests at heart but it is inevitable that these parents will be inundated with well wishers giving them information and advice. Both medical staff and friends and family will be handing them leaflets and phone numbers. Just because you know someone with a child with Downs does not mean that the parents will want to know them too. Just because you have a child with Down’s Syndrome doesn’t mean you are exactly the same person as the other mothers in the same situation, so you may not want to get to know them either. Honestly, the parents of this child will take in the info in their own time, if they want to get in contact with others they will, but for now leave them to it. They are not being horrible they just don’t want the fuss. Others may want all the info straight away mind you, so judge it on what you can see and ask them ‘have you been given information about support in the area?’ If it’s a no… then fill your boots.

Read more from Alice in A parent’s point of view.

For more info and support for families and friends, and if you want to do a little research, visit the Down’s Syndrome Association.

+Alice Baillie