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?
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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:

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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:
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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:
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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:
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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?

 

30 for 30

I have decided to do the big Lidingöloppet next year. It is 30km the course is really tough, most that have done it say it is harder than a full marathon because of ten (?!) killer hills, the most famous being Abborrbacken, which comes a few km before the finnish line. At the top of the hill a gospel choir is singing and when on top of the hill you are said to believe in miracles, but then the next hill Karin-hill shows up and you doubt there is a god at all.uF

So despite barely being fable to walk today, hardly getting any sleep from thigh cramps and “piris” killing me most of the night, and that just after 15k, I have come to the natural conclusion:
I am running therpe 30k next year again for the Swedish Down Syndrome Assosiation, and I am going to attempt my very best to raise 30,000kr for the Down Syndrome assosiation (Svenska Downföreningen) along the way! I need help with a button, but this is my resolution. Public on the internet for everyone who wants to see (and please help)!

So 30k for 30k starting right now!

1st grade

Vince started first grade yesterday. So far, so good…. If he only knew how many days he has left in school….

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Swim camp part 3!

The three day camp is over! We had a lovely time and my DS batteries were recharged with the energy I needed! I love meeting other parents and getting to know their kids. Vince had a great time too but is totally knocked out after hours and hours in the pool.
I am prouder than proud of him! He did great! We have signed him up for swim classes at MASS (a place close by) for swim classes in the fall, that should be fun.

The swim teachers at camp were absolutely amazing. It gives me goose bumps to think about the energy they put into each of the kids this weekend and the ability they had to motivate them. Vince adored his swim coach Andreas, and they were a good team together. He is also going to give Vincent private classes based on when we can be in the area! Loved it. I afterwards found out that he is number two in breast stroke in Sweden and is planning to swim in the European Championships next year. Swell and dandy and what an awesome role model!

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Swim Camp part 2

This camp can’t be explained in any other way than a total success. Today Vince had two hours on his own with an awesome swim coach who he immediately listened to and paid attention to.
This is after one hour with him:

Swim Camp

Vince and I are spending three days in Uddevalla for swim camp! The original plan was to not sleep over as I figured he would not care for that too much. Well that was wrong. Once he finally agreed to come out of the car, he told me he was staying. So we are.
We are on night one and just had a get to know each other evening. There are 16 families here, and the only common thing among us is we all have a child with Down Syndrome. Some I have met before, some I know of from online communitues others are new. And it is awesome.
Tomorrow swim classes start!

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Where we are sleeping

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Ahmmm

I am just going to sneek back in here and really try to keep up… It has been a bit much, but hey that is life.

Still running alot, 35-50km per week. Summer was great (was – it is almost over in Sweden). I think I will remember this as the best summer in a long time, and I hope the kids will remember it this way too. We swam a lot and enjoyed little outings around here mostly. We had many fun visitors and we grilled almost every day.

Vince starts first grade on Monday. That is huge! I will update on that in a separate post, but I am really happy (now at least) and I feel rather calm about it.

My dad is doing great, and as of what we know now the tumor is at least not growing. Still eff cancer.

And like I said, a serious effort will be made:)

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