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?



Well. It has been a while. I will try my best to be better at posting and will try to catch up.
With that said, little Prince Vince turned SEVEN in May! 20130616-210330.jpg

He loves pirates, so we had a pirate party. There is a place, actually a boat, called Maritiman in Gothenburg harbor, and they do birthday parties for kids. I loved the outsourcing idea, Vince loved pirates, so we decided on that. He loved it and had a blast.
A pirate met the kids and they all put on life jackets. The pirate had a treasure map to follow, and together they solved riddles to get the combination to pirate boxes, each filled with a clue to the final treasure. The boxes were located on four different ships so they walked back and forth between the boats (together with the pirate). In the end they found a treasure, had hot dogs and ice cream and then had a final puzzle to solve. They put together a gifant jig saw puzzle of a map showing where the biggest treasure chest was and where they each got a golden bag of candy. Hooks and eye patches were given out when they ate.


2009 vs 2013

To the left Vince playing live building blocks with Edgar in 2009. To the right Vince building onsleeping Eds 2013.


Awesomly Awesome Spring Day

We are back home. The trip back went just fine, the kids were great again(?!) despite having to get up at 3.45am to go to the airport for an early flight!

We came home to nice beautiful spring weather. A 14k run with a friend this morning through the forrest and around the lakes where we live was a great start of the day. Vince had a friend over for a bit and then we went for a long walk in the great weather.

In a tree house with a friend

Both kids are convinced a bear lives here.

On top of the mountain

Calling us to tell us he found a bear.
Not really, his immagination is vivid to say the least…

Eds in action.

Hamstering Up

On good ol’ Styrian food and friends. A day at the vineyard Krainerhof outside Lannach, is a given on any of our Austrian trips, a tradition dating back to the beginning of our history in 2003.
Käferbohnen with pumkin seed oil dressing.

Eds and Mr B sharing a cheese plate and fresh pressed apple juice

The hills.

Driving home on the Autobahn between Graz and Vienna in the night brings back many memories. I have driven there many times. After Mr B and I first met, I was working in Vienna for a while and he was in Graz ( before he moved to Mexico, and I moved to Detroit to be closer – global thinking 🙂 ). I spent all the weekends in Graz and drove back to Vienna on Sunday night. Two kids later, driving the same road together in a pleasant silence was almost magical!
Tomorrow more Austrian adventures!

Back in Austria

We are back in Austria and it is a mysterious feeling of feeling home. I feel home in Sweden too, actually wherever we unpack our bags we feel at home, but still this is special! It has been almost one year since our move to Sweden, and this is my first time back. B and the kids went in the summer.

Anyways, we booked a flight from Copenhagen directly to Vienna, and in the planning phase train from Gothenburg to Copenhagen seemed like a great idea. Then the closer we got, the more nervous I got about travelling with wild and wilder. However, the kids were amazing!!! Vince was really excited and stayed calm, only bribe was a Subway meal for lunch to bring on the train. Edgar still had a fever but was really in a great spirit too.
Vince fell a sleep before the plane left, and Edgar a few minutes later. Mr B slept too and I spent the flight reading magazines, just like in pre-kids days.
Getting on the train at home.
On the train
Waiting for dinner at the airport


Third gate change in 20min…

Whose kid is that?

At Vienna International Airport 10.30 pm

Weekend in Denmark

My parents invited the four of us and my brother and his children on a trip to Denmark. It was great to get away for a weekend, and to stay at The Reef, a swim resort with high focus on kids was an excellent choice.

Mr B and I think the trip was a success, and it was rather calm. You know we had our two extremely energetic minions with us. Everyone else in Denmark, on the ship across the sea to Denmark and anyone else in or anywhere close to Scandinavia may have disagreed.

I will give you a few examples:

  1. Mr B and I both think Saturday night’s dinner went fairly uneventful. Others: still in shock that Vince fooled us into thinking he was being stubborn about going into the dining room, when he actually fooled us all to stay behind in light of trying to break the glass on the little fire alarm button. (Having the whole hotel and swimming area take part of a real fire drill would have been eventful, especially as a lot of people would have had to stand outside in the zero degree evening in their bathing suits waiting for a clear signal, but hey, I did remember the fire alarm box for a millionth of a second, followed his mind and ran back in time to stop it him from actually breaking the little protection glass he was knocking on with his little fist…
  2. Edgar did NOT fall out of the window he managed to open on the fifth floor.
  3. There was no blood
  4. No one got loste
  5. We even survived having the ice cream machine run out of ice cream JUST as it was our turn in the ice cream line.

I think the trip was nothing but a success! As for our fellow family members travelling with us, I do happen know they have all booked separate trips without us in the future. 🙂

Brothers in crime

Taking charge in the play area on the ship

Pirates part 1

Calm pirate bribed with candy

Not so calm pirate, unbribeable

Checking the route with Morfar

Meeting real pirates

Mini captains

Thanks for the trip!