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?

 

Remember that Pediatric I was talking about?

A while back I wrote this about a new pediatric examining Vincent. I have thought about it pretty much daily since then, and finally we decided against it. Today I took action and called the team leader up and told her Thank you, but no thank you to any further examinations/diagnostics.
The team leader did not understand our point of view. I told her that we will not allow this pediatric to spend any alone time with Vincent as of now. If she wants to observe him when he is with the other therapists or when he is in the group in Kindergarten that is fine, but she will not take Vincent out of the group just to continue doing her diagnostic. There is simply no need for that. The team of therapist is already in place, and we have Vince under a great medical team that we cooperate with. Down syndrome is NOT an illness and there is simply no need for him to be examined/diagnosed/observed call it whatever you want, on a weekly basis in Kindergarten.
I understand that in some cases with therapists involved there is a need for this type of interaction. However, in our case this is not necessary.

It ended with the team leader telling me she will need to discuss this with her boss to see how she will further move along now that we are not allowing this new team member to be part of it all.

The thing is, I only have one kid with Down syndrome so far. I have no prior experience in dealing with this type of situations. I do not know what the future holds, but I have learned one thing: to go with my gut feeling. And whenever I am not comfortable with it, it is time to do something about it.
I am no expert on Down syndrome per college degree, but I do interact daily with many other parents of kids with DS. We constantly exchange information, tips, advice, and anecdotes about our lives. Also, see that list on the side, DS Related Blogs: yes I read all of those daily/or as they are updated.
I seek out information on this topic in the news.
I have wonderful family and friends who forward me information when they find it online or in the press.
And you know what, on top of all that research stuff, I am a self-proclaimed expert on Vincent. I know better than anyone what his signs, actions and behavior means.
So with that said, I am the one (in combination with B) who decide who gets to hang with my son.

I do believe that the team leader does have a genuine interest in my son, do not get me wrong. Of course it gets difficult when you mix personal life with work. For her, her job is my son. That is a tricky situation. But for now, I have a feeling that this neuroligical pediatric is not necessary for Vince and for now, we are skipping her.
I am sure this is not the last word in this saga though…

Vitamins?

Do you do them for your kids? And if so, for 46ers and 47ers?

We started Vince on Eskimo Kids in June. I bought one (horrendously expensive) bottle, to see if he would take it at all. He did. He even likes it. It is a ‘ An omega-3, 6 +9, Vitamin D+E fish oil supplement formulated specially for children’, with tutti-frutti taste.We are stocking up next time in Sweden, as from what I have found so far, it is not available in Austria.

I do not know if this is because of the Omega-3 or something else, but Vince is def a lot calmer [relatively speaking] than before. I can not really say that his speech has improved a lot, but it has improved. If it is due to the oil, I am not convinced. On the other side, I am thinking it can not hurt to give it to him since he takes it happily so we will continue.

What do you do for vitamins in your family?

First Day of Kindergarten

I think it went good. I have been thinking about it for a few hours now. I mean, Vince was absolutely fine with everything.
We had decided that we would come at 1.30 pm as I am home, and as it is an all new place, all kids were having their first day today. We had been told that it might be till October til the IZB (the extra resources/therapy people) could start their ‘assessment’ of Vincent, so I was a bit positively surprised when the leader of the team showed up at 1.30 too.

So we had a meeting with Vince’s teachers and the team lady. My very first impression was not that impressive, but I actually stood up right away and said clearly No to some things I do not believe will be the best for Vince. I think she was a bit surprised about that I did not just agree with her, and she did say something like that she has all the Kindergarten experience, and I told her true, but I have 3.5 years experience with my kid.
In the end it feels good and I think right. The teachers were definitely listening to what I had to say, and asked good questions. I also told them that we prefer being asked questions instead of them making assumptions. All but one has no previous experience with integration and or DS. I also told them if they get questions from other parents to please forward them to us and we will answer to the best of our knowledge. I was not quite that bitchy as it sounds, but I do belive it is better to speak up early instead of being unhappy about it all afterwards.
The team leader was a bit, hmm, negative might be th right word- on certain points. But when we left she did say that I seem to know what I am talking about and that I had done my research. Duh, you know it is my kid? I (Did not say that though…)

Most likely Vince will have speech, physio,  motor, and ergo therapy in Kindergarten as well as an extra person being there a few hours a week every week. In addition a child psychiatrist (?) will visit bi-weekly. I guess for him to discuss issues at home? I kid, I kid, but seriously I am not sure what the purpose of that visit is. I will take it though. When I asked about it they mumbled something about cognitive skills development. See, there are a lot of big words rolling around at this type of meeting. The one today lasted almost 3 hours. And I am VERY thankful for it, you just feel a bit fried afterwards. Kind of like you have to sell your kid really high and low at the same time.

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Preparation pack: Backpack with snack box, Book by Conny Wenk for the teachers/parents to read, a book discussing truth/myths about DS for the teachers/parents to read (if you read/understand German, this one is really good), and Vince book of signs with some key signs in there. To be added to throughout the year.

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The kid ready for first day of Kindergarten. He did get a hair cut yesterday, which the neighbors might have thought were some kind of severe issue due to LOUD screaming…

58 min till Opening

I am so nervous I could puke. Radio and journalists from 4 newspapers and a magazine will be here together with some of our closest friends and family in 58 min. Just sent Bookie away to buy me a big well deserved vodka drink…

My Second Mother’s Day

Is certainly a lot better than the first. And even though I was afraid that this day will forever be connected with bad memories, I  was wrong. Even thinking back, it does not seem so bad anymore. Last year on Mother’s Day at 9.10 in the morning, the doctor told me he thought my baby had Down Syndrome. Bookie had not yet arrived to the hospital so I was told alone. Here is what I wrote about my first Mother’s Day. Three days later it was confirmed. I chose to tell everyone I knew via my blog. Here is that entry. I somehow got in touch with Rebecca and Michelle and I remember them telling me things like ‘If I had known then what i know now, I would not have worried so much’ and I remember myself thinking ‘Well that was them, I am different, this pain will never go away, it will always be hard’. Wrong, wrong, wrong so cliche, but so true, if I had known then, what I know now about having an extra chromosome I would not have been so worried 🙂 So today I am thankful for all the support from family and friends, and of course from the whole DS community – without each and everyone of you things would have been a lot harder. THANKS!

With that said, we are off (soon) to Vienna Airport to fly to Mallorca, so my blog will probably be on vacation for a week unless I find a way to cyberspace 🙂

Signing Times!

All you with children with DS (others too of course) pls read the whole text and let me know how you deal with these issues. It will be MUCH appreciated. 

We went to a workshop (first out of four meetings) today about signing, communication and early reading for children with DS. It was great! I really like the lady that has organized it, we also visited one of her workshops in Salzburg when we went to the Austrian DS Conference back in October last year. She has a son who is 17 with DS and is also an Early Intervention (EI) therapist focusing on communication. She gave us a lot of helpful information and we all got very creative and signed through a few songs. Really cool. On Tuesday we will get a suggested course of action from our EI on how to incorporate our current EI with her and also have signing sessions with her. Exciting times to follow 🙂
Vince is showing signs of being ready to start communicate and reading signs. He reaches his arms high and calls ‘Amma’ when he is sad and wants me to come. So that is good, he is also focusing on you and is looking when you sign.

Like I said, the signs are pretty easy (we are using GUK developed by Etta Wilken) but the hard part is to actually do the signs everytime you say the word. I find it hard to always do and remember what we are being told to do by the experts like our EI, Physio Therapist (PT), and Speech Therapist (ST) in order to maximize the outcome for Vince. It puts so much pressure on you, and especially when everyone thinks it is the most crucial thing in the development. Because is it not the most important to be mobile, to speak well, to read, to write to understand this or that? Which one would you choose to deprive your child of? And yes, of course, I love my child, and I know that is the number one thing, but still, all that pressure of making sure it happens now and not too late – as they all tell you unless you teach your child this  now, the chance has come and gone, and your child is doomed to be miss out on something crucial. I also understand that as Vince gets older and I have dealt with yet another year or so of this, I have learned to pick and choose better, but until then, what is your advice on how to deal with stress and the constant bad conscious of not doing enough?