What it is like to have a sibling with Down Syndrome – the real answers

Mr B and I had the chance to go to a three-day seminar in Stockholm WITHOUT kids. Come to think of it, that was the first time we got away without the kidlets since Edgar was born – and he just turned four…
The seminar was about Down syndrome and with amazing speakers such as Dr. Brian Skotko and Göran Anneren, a famous doctor in genetics who has done marvellous things for people with DS in Sweden since the early 70s and some other DS researchers from Sweden. Dr Skotko who I heard of soon after Vincent was born  and to be able to meet and listen to him this past weekend was simply amazing and inspiring. Dr Skotko has done a lot of research about DS, about siblings of people with DS, about parents to children with DS. What he has done is given a voice to real people living with Down syndrome and challenging the stereotypes of Down syndrome with answers from the people actually living these lives and the people who have the experience. Along with that he has published like a trillion articles, written books and is also the co-founder of the Down syndrome clinic in Boston, MA. So to have the opportunity to listen to Dr Skotko and Anneren for days in a row was a pure pleasure.

The research presented is about what it is like to have a sibling with Down syndrome, what it is like to be a parent to a child with Down syndrome and most importantly maybe, what it is like to have Down syndrome. All very interesting topics, especially as the answers put out by society seems to have been formed by people NOT living these lives and mainly by people not equipped with real information rather than stereotypical thinking of what they believe to be correct. Research clearly shows there is a huge divide between the two.

I am going to divide this up into a few different posts in order for it to not be too long! First of is:

What is it like to have a sibling with Down Syndrome?

97% love their sibling with DS, 94% of them are proud of their sibling with DS.
About the 7% who feel embarrassed about their sibling with Down Syndrome, and the 4% who wish they could trade in their sibling with DS, the real interesting answer would have been to see what siblings to kids without DS would have answered. I am rather confident that number would at least have been the same, likely even higher.


What about siblings and social life when having a brother or sister with Down syndrome:


9 out of 10 say their friends are comfortable with their sibling with Down syndrome.


What about having a sibling with Down syndrome and family life? One of the most popular answers to why people choose to terminate their pregnancy when finding out the baby they are carrying has DS is because they feel it will put an unfair burden on brothers and sisters in the family. Here is what it is really like:

All of 88% actually feel like they are BETTER people because of their sibling with Down Syndrome. And 91% feel thay have a good relationship with their sibling with DS. I dare say I believe that less that 91% of the general population is happy with their siblings…


What about the level of involvement when having a brother or sister with Down syndrome:

15% of the siblings felt they were asked to do too much for their sibling with Down syndrome. Sounds very reasonable, and is probably similar to how many siblings feel to brothers and sisters without DS too. Unfortunately I have no real percentage of that.


What about life lessons learned when having a brother or sister with Down syndrome:


So important! To tolerate each other and to never give up,along with the ability to love and forget, what else really is important to teach each other?


9 Responses

  1. You raise some very interesting points here. Generally children are very accepting of any differences. They also don’t know any different so it is really hard for them to answer such questions. Glad you had a good time. x

  2. I love this! I have brother with DS and I would never trade him for anything. He has taught me so much and is the greatest brother I could ever ask for. I just moved out and I miss him dearly.

  3. Hi Christina! Thanks for sharing these numbers! You do so much on your blog for raising awareness and I truely hope that many people who are not in day to day contact with DS (like me) find their way to your blog!

  4. I just lost my sister Angie Babe with DS last night. In the 48 years she lived, she taught me so much about life. It’s true DS kids do love so much more deeply.

    After my father passed in 2009, my sister talked about him non stop. Doctors said her heart was broken by my father’s death. She cried uncontrollably when it first rained after burying my father. She thought he would get wet and wanted to take an umbrella to the cemetery.

    Her needs were minimal and what she enjoyed was just being with family who loved her. She loved backpacks, the Free Wily movie, pencils and paper. Very protective as well for the ones she loved. Angie didn’t like anyone being mean to one another. She did have a temper as well but when she forgave you, you felt it with her embrace.

    For all the stares of people who just didn’t understand or know what a DS kid was all about, I was always proud to call her my sister. Yes she was different, yes she was special but overall she was a person like anyone else with simple needs and wants and desires only wanting what most of us want – love and understanding.

  5. Pure BS! i’m sure those siblings lied, lied throught their teeth! My sister has down syndrome and it’s a horrible situation to be in and I don’t wish it on anyone. Whenever I think about it, I want to cry and commit suicide. I feel stuck and I know that I’ll never be able to have a normal life, a husband, kids and so on because when my parents die, I’ll be the one taking care of her. Future parents, please, you need to get screened for genetic diseases like Down and ABORT if you know that your kid is going to be disabled. If you ever have that kid, not only you’ll ruin your life but the one of the siblings who end up being disturbed and depressed adults. Those who want to sugarcoat the reality of the siblings’ lives, good luck taking care of a 40-50 yo Down Syndrome person. Being neglected by your parents because they are too busy taking care of their anormal kid, being ostricized by society, humiliated because your family is not normal is extremely traumatizing. Now, I’m a totally messed up person, I’ve been depressed and suicidal since I was a child. The only thing I pray for EVERY DAY is that my sister dies pretty soon so that I don’t worry anymore. Once again: having a kid with DS means no future, no retirement, financial hardships, no rest before you DIE. Don’t be selfish and ABORT that kid while it’s not too late. Your other children will thank you.

    • I’m sure the government will look after your sister if you don’t. You really don’t have to and shouldn’t with that attitude. Of course it’s not a good situation to be in and even your own relatives treat you badly to exclude your family(because of the DS person) from theirs.
      Although at times we do feel very stressed, it’s more gift than it is a curse. My brother is 10 years older than me and most of the times I do wish that he wasn’t like that, mostly for his sake. Because, the world that they live is very different from ours. The emotions that they go through whether sad or happy and their fears which they can’t share with anyone.
      I will never regret my brother being like this, because I have had so many laughs and memories with him.
      I played in the park with my 10 year older brother and now I am an adult and try do my best to help out my mom with him.

    • You seem to have inherent mental issues. However, you are wrong to project that blame onto your sibling. Very wrong, in many aspects, especially morally.

      I have a brother with DS, and I love him very much. My parents have had to give him more attention than me. And I may very well have to be the sole caretaker when we get older. But, I love him and his joy and well-being are more important than any sacrifice. And, you can still have a nice life! I still have a great social life – I take my brother to some events, and leave him home for others. I can still get married. There are many unselfish people out there that could make a good marriage mate.

      Based on your comment, a lot of your ‘hardships’ and ‘lack of a future’ is down to your selfish attitude. I’m pretty certain you would have had a hard time even if you never knew your sister, or if she never had DS. You’d find something/someone else to blame.

      And to wish death upon your sister? It’s one thing to wish for her to be “normal” – I wish my brother was so he could have an easier time. But you are so selfish to pray for her death. You’re actually beyond selfish – you’re just an evil person. You may think that you’d be better off without your sister, but I’m sure she and her entire family would be better off without you.

      I urge you to speak with a mental health professional. You remind me of young parents who hate their children because they can’t party anymore. You can lead a happy life, and see reasons for joy in your sister. But right now, you have a very harmful attitude.

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