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10 Things to do when a baby is born with Down syndrome – a guide for friends and family

You hear the news that a baby is born. You feel joy and happiness. You are excited to find a way to congratulate the new parents. Is a call going to be enough? Should you pick some flowers and go there to congratulate them in person? Should you find a nice greeting card or just choose some balloons? Basically, you have so many options and don’t know what to choose.

You hear the news that a baby is born with Down syndrome. You feel like you don’t have the same options listed above. You have no idea how to react, what to say. You feel somehow sad and sorry for the grief of the new parents. You believe there’s nothing you can do so you decide to do nothing. But that’s wrong. The most important thing is to be there, even if you don’t say or do the right thing. They need your presence and support more than ever. Think of what you’ve felt when you heard the news and imagine what they are going through. They need your love to get through these hard moments.

Let us remind you which are your options:

  1. Smile and play with the baby: The first reaction when you see baby will mean the world for the new parents. You should smile and play with the baby any way you can. You can say that the baby has her mother’s/ father’s smile. After all, besides the features of Down syndrome, you can see some traits he inherited from his parents. Tell them about that, it will make them feel much better. They need to know that  when you look at the baby, you see a part of them not just Down syndrome. The parents need help to accept their child and this will only facilitate the process.
  2. Ask the parents how are they feeling: You may be hesitant to ask this question, because you have no idea what to say next. But they will appreciate you asking because they need someone to talk to. They are overwhelmed by all the emotions they’re experiencing and they might not be able to talk about all that right now. Just knowing they have someone who cares about them is very important in this moment. Be careful what tone you use when you ask this question, try not to be too worried or pitiful. Otherwise, this will make them feel embarrassed and they will slowly isolate themselves.
  3. Ask about the baby’s health: Even if you don’t know much about Down syndrome, you know that it determines several health issues. Ask about the baby’s health, if he needs surgery or not. Be extremely careful how you build your speech. The best advice is to be realistic. Negativity or over-optimism will make the parents feel misunderstood and this will only make them isolate themselves from others. You can help the new parents talk openly about their child’s health issues and help them find the best solution. You can hear them out and give them your own advice. You can also help them by doing research in the field and recommend them doctors, procedures or medical centres.
  4. Encourage the new parents: It may seem like a cliché, but they really need someone to tell them that they will be wonderful parents. They are in shock right now, questioning everything they know, they are fearful and doubtful. They really need sincere encouragements from friends and family who know them for a really long time. They need you to tell them that they are strong enough to face all the challenges that will follow and that you are there to support them.
  5. Inform yourself about Down syndrome: Before talking to the new parents, start reading about Down syndrome. You will understand what this genetic disorder means and you will have an informed opinion if they need your advice. When reading about all of this, try to read some parents’ blogs and see what they’ve felt when their baby is born and how they managed to cope with these feelings.
  6. Be there any way you can: Set up a date in the near future when all of you will have dinner together. You are cooking. Ask when can you babysit. They need you to take the initiative and organize activities for you to share. They are too overwhelmed to do this themselves but they need it more than ever. Be careful to take into consideration their time limitations and not to pressure them.
  7. Offer your help: Help them in anyway you can. Even the small things. The new parents are going to a very hard time emotionally and they need all the help they can get. Help them with certain daily activities or be that someone they can talk to.
  8. Respect the parents’ requirements: Don’t overreact if they ask you to wash your hands with disinfectant before playing with the baby or if you have to wear a mask when you enter the room. The baby’s health is fragile and they will do anything possible to protect him. Don’t insist on holding the baby if you see that this scares them a bit. Be understanding and don’t act like you know better.
  9. Congratulate them on their wonderful baby!
  10. Bring presents!!!

In the end, I hope you see how many options you have. You just have to be understanding and to be there, everything else will come naturally.

As a parent, what else would you add to this list?

The power of words – Language guide for Down syndrome

Everyone knows that words are unbelievably powerful. We all know those words that bring us immense joy and happiness: hearing “I love you for the first time”, your baby’s first word and many many others. But words can also harm people – sometimes intentionally, sometimes due to a lack of information. And when it comes to Down syndrome both of these reasons have determined the appearance of certain unpleasant labels.

Thankfully our society has evolved from naming children with Down syndrome “mongols”, “morons”, “handicapped” or “retarded”. But there are still frequent mistakes when referring to a child with Trisomy 21:

  1. The expressions “Down’s child” or “ a Down syndrome child” – try using a “person first” language, this way you’ll emphasize the child’s personality first and leave his disabilities in the background. Therefore, the correct expression is “ a child with Down syndrome”;

  2. One of the most common mistakes is to consider Down syndrome a disease. This is absolutely false, it is a genetic condition which includes a series of cognitive and developmental disabilities. Therefore children with Down syndrome are not victims or sufferers. One is not afflicted with Down syndrome. The correct term is “ a child has Down syndrome”;

  3. Even though the child may experience some degree of cognitive and developmental delay, the parents find it offensive to call the child “mentally retarded”. The preferred term is “developmentally delayed”. You can also use “ cognitive or intellectual disability”.

  4. Many families are still offended by the word “cure” often associated with Down syndrome.  First, “cure” means that a disease is present, which is false. Second of all,  at some point, in the media, this word was used as a synonym for abortion.

You can read more about People First Language here.  As an incentive for you to read this article, I’ll leave you with one simple exercise (provided by Patti McVay):

  • Think of one thing that you don’t like about yourself. Something that is also considered “undesirable” in our society.

  • Then put that word in front of your name and think about how you’ll feel when everyone calls you like that.

May I say that all the information above is very useful for any individual. It may look at first like guidelines for preferred language when it comes to Down syndrome. It’s useful when you write an article or a comment about Down syndrome. But in real life, in face-to-face conversation you have to pay attention to much more than this.

When a parent tells you “My child has Down syndrome” even the pity in your eyes could hurt them. The sympathetic look or the response “ Oh, I’m sorry”  are almost as offensive as calling their chilled “retarded”. And if you would only imagine what kind of effect theses reactions have. What you say about a person has a great impact on his development.

This is our version of a preferred language guide for Down syndrome.Which other gestures or words did you find offensive in conversations about your child with Down syndrome?