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?

 

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 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:

At Least He is Happy

It seems as if you have a kid with special needs the ultimate goal is for the child to be happy. About school, language, society the big secret lies within ‘as long as s/he is happy’.
As long as Vince is happy that is what matter, and that should be what defines the challenges in his life.

On the other side, if you have a child without special needs, happiness is taken as a given. Or at least not as a defined goal when it comes to planning the child’s elementary education plan.

Do you realize exactly how ridiculous that is?
I mean, all parents who do NOT want their kids happy, please stand up and put your hand up now.
Anyone?
No, I did not think so.
If you have a kid without special needs (and guess what, I have one of those too so I have some insight) the expectations are rarely for the child to ‘just be happy’. And I am not minimizing the importane of happiness in ones life, not at all, but really? My kid has Down syndrome, and therefore as long as he is happy in school I should be fine with that?

No, I do not believe in that.
I believe he will have to be rather unhappy quite a lot of times. He is happy when he gets to do what he wants to. Does that mean he should be allowed to sit and eat candy and play on his i-pad and take breaks whenever he wants to? Does that mean he should play with the knights and the castle till he is 15, just because that is what makes him happy? Is that how life is and will be for him in the future?
At least my life is not always going as planned (and just as a side note, I chose happy).

So about school again, I want Vince to be challenged to his fullest ability, if that means learning to read when he is 8,12 or 22, is really not the point. That he is challenged after his own ability, and not after what someone else thinks he can do, is what matters. If it means that he will not learn to read because he simply can not, well then we will have to live with that, but if it is because the educational system can not find his channel to learn, him being happy just will not be enough.

You know the saying reach for the stars, it really does not make a difference the number of chromosomes you have. We still aim high for both our kids.

 

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A Few Cools

1. We were driving home from school the other day. Vince was as usual sitting with the window down on his side, letting the wind blow his hair around. We were driving down the main street in our Stars Hollow sized town, when we saw three girls around 12 years old walking home from school. As we drove by they said “Hey that is Vincent” and they all waved.

2. Vince had a friend over tonight. His own friend. They play and argue like an old married couple and protect each other. Real friendship.

3. Right after his friend left, the door bell rang. Outside were four, to me, unknown kids. They asked if this was where Vincent lived. So I called him to the door. They told me they go to school with Vince. They were between 6-10 years old. The 9-year-old boy told me he takes care of Vincent at school and helps him if he needs something at break time. They also told me Vince has tought them many signs, and that Vince is good at soccer. It was almost time for my kids to go to bed, so I told the kids to come back another day to play, and I told them where our house is we are moving to soon is. The boy then spoke up and was worried that Vince was not going to stay in this school. I told him Vince would and his reply was cool, I like Vincent.

4. As I dropped of at school today, Vince assistant T told me about last week when Vince wanted to go play soccer with the 6th graders. We live is a place where sports is everything, so these kids are good. And shoot hard. T walked to the soccer field with Vince, and at first they just looked from the sidelines. Then Vince wanted to join the game. At first the kids looked at T kind of like ‘take him out of here’, then one kid spoke up and said “just let him play, he is just running after the ball anyways”. Another boy agreed and Vince was allowed to play with the big kids. He played with them till the bell rang and it was time to go back.

These four things may seem small, but to me they made a world of difference.
No one told the kids to act in a certain way, these kids took it upon themselves to reach out, ask and accept. There are a lot of good people in the world!

School Start

We had a fab vacation, but the kids were fighting A LOT too. And there are a lot of situations that are really hard for Vincent to deal with. Waiting for food in a restaurant is never a hit, and not running away in the street is a tough one too. Not pushing Edgar in the street, off a dock, in the water or under the water is making it a constant game of always, and I mean ALWAYS being right there. Not a single second un-attended. Not one. Ever. I usually shrug it off, I am used to it, and that is just the way it is. Eds is quite a drama queen as well and I swear they tag team each other against me too. But at times it gets to me and you get a feeling of complete failure. Failure to fix, to educate, to be patient, to be there, to listen, to understand and try to understand an almost non-verbal 6-year-old. Is it a DS thing or is he mad at me cause I just can’t understand what he is trying to explain with words that to him seem perfectly clear?

There have been many times when I have asked myself if we are making the right decision putting Vince in our neighborhood school. The last weeks have been pretty tough (four weeks off). Should we have considered the special eds program more? Well, actually, that is not an option here in Sweden, the first year, grade zero, has no special ed’s classes. There is no separate plan for kids with special needs. They are all main streamed for grade zero. Made this decision a bit easier to make. However, there was the option of leaving him one extra year in Kindegarten, which we decided against. Also, we have the wonderful opportunity that in our neighborhood school there are three kids born in 2006 who have Down syndrome.

There are 19 kids in the class. Like I said, three of them have DS. There are two teachers, and three special eds teachers in the classroom. School is set up that drop of is from 6.30 am and pick up is latest 5.30. If you come before 7.30 you have breakfast in school. Lunch and snacks are also served in school. At noon, the class room turns into an after school activity room. So after school and school is in the same class room, with the same teachers. I like it. Four of the teachers are full-time, and one is 75%. The special eds teachers are not assigned to the three kids with DS, but rather to the whole group. I like that.

With that said and more than a bit nervous I took Vince to his first day of school today.
I think it went rather fine. There were some situations when he told me he wanted to go to sleep (if he only knew how many years of school he has left), a few times when he looked sad, but in general he looked pretty comfortable in his new surroundings. I was with him for half a day. There were a few things that had to be addressed and needed immediate attention. One example being that during the breaks one adult HAS to know where Vince is at all times. The school is not fenced in, it has a rather large wooded area and there is this little mountain/rock thing which one easily could fall off and get hurt. At first when I pointed this out to one teacher she responded with saying that this is a great place to learn boarders and develop gross motor skills. Very true, but as Vince (and Eds) both are kind of test pilots and crash first, then learn, this was not an opportunity I am ready to learn from (falling off the rock and then with a broken arm or leg learn to be careful).

Anyways, when I returned in the afternoon after having left him a few hours on his own, the teachers had realized that there needs to be some more definite guidelines set up. There will be a few changes in some rooms and a schedule as to who will watch Vince specifically during breaks. I like it. They could have gone all ‘We know best’, but after just one half day they realized some changes are necessary.

The principal stopped by and asked if I was comfortable and what my most immediate concerns were. I like it.

And most important of all, Vince had fun! He enjoyed playing with the things in school and he enjoyed being with his friends again. I think this is the right choise and I think Vince will learn a lot. And I like that.
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Walking to his class room

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Playing pool with Tea

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And foot ball with a teacher

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The mountain/rock which gave me a bit of a nervous break down seeing all potential injuries…
Vince is the kid in blue balancing on the edge.

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I admit, great for gross motor skills and great for Vince who loves climbing…. Still a bit steep for my taste.

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Lunch.

About that Move

We decided in October to move to Sweden. We have been thinking about moving somewhere new, and possibly somewhere with a better laid out regular school plan than Austria. The school law has not been changed in Austria since mid 1910s (information from a school specialist in Austria working on getting some changes through). I do believe the first four years would have been somehow OK here, but at 10/11 years of age is when you pick academics (Gymnasium) or practical (Hauptschule) education. Guess which choice 99% of kids with DS end up in?

So we decided after we both were faced with a great job opportunities to try out Sweden. We are not that picky as for what country per se, and if it does not work out to our likings the world is still wide open for us. This is our fourth country (US, Mexico, Austria and now Sweden).

As the plan looks now the movers are coming March 30-31. The whole move will be handled by movers. They are packing and unpacking everything. (Have I ever mentioned that I hate moving, and has managed to be very pregnant (32 weeks plus) on both of our last moves)? The truck is then leaving on the 31st, but as you ar not allowed to drive a truck on Autobahn on Sundays throughout Europe, the truck will most likely be in Sweden and start unpacking on April 3, being done on April 4th.

When looking into exactly where to move, we had pretty much one factor we cared about. Vincent’s opportunities. And that we need to both get to our jobs which are located in Gothenburg and in Trollhättan (north of Gothenburg). Although Sweden has a national law of course each state/municipality can still read into that law. I did a lot of research talking/mailing/FBing/forum:ing with parents to children with special needs and found one municipality where all the people I talked to were satisfied with it and their contacts within the area. That is how we picked Ale Kommun, just north of Gothenburg. After some more research and contacts we decided on the specific area called Surte. It is most likely not known for being the prettiest area in Sweden, but I was pleasantly surprised (I had a really bad picture of it in my head) whenVince and I visited a few weeks ago. Surte has about 6,500 inhabitants, and is located about 10 min north of Gothenburg. Its only claim to international fame (I have heard of) is that the man who designed the original coke bottle is from there.

The kids have day care places and will start in April 10th, the same day as Mr B starts his new job. I will start my job about a week later, or when the kids are fully schooled in at day care. We visited the day care and it seems great. I am sure the kids will be in good hands. The school is also very close to there, and both school and day care are located close to our home.

Oh yeah, we finally found an apartment. It is probably easier to win a million dollars on the lotto that trying to rent an apartment (or house) in Sweden. There is this line system, so unless you have stood in an online line for at least 3 years in Ale Kommun (in Stockholm and Gothenburg a minimum of 11 years) no rental home for you my friend. Unless you sublet. We were able to find a private rented apartment. We had hoped to get a bigger one, but the one we had our eyes on disappeared at the very last minutes. We did find another one, so now we will stick with that one, just to be able to move forward.

About or school choice for Vince… that will come up next. Till then, a view of our future street:
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Christmas Shopping with Vince

Vince and I took the bus to the city today and did some Christmas shopping. I recently noticed how much easier things have gotten with him. He rarely runs away, he walks (most often) holding my hand or stopping when prompted, and he has a lot less melt downs. Also, we were far from alone in the city today and he was being really good with waiting for his turn and he no longer gets so stirred up with being in big crowds. It was all very what-do-you-call-it? Normal?

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Thumbs up and Cheese for waiting for the bus

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Thumbs up for riding the bus

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A bakery cart

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Playing with the trillions of different Schleich animals

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Finally getting a turn, after waiting patiently at the cool race track. Stitches will come out on Monday by the way….

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20 min later we are still at the race track. He did awesome driving the cars! (When will I stop thinking he cannot do certain things just to constantly proven wrong by Vince?)

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Subway lunch

31 for 21: Day 26

About Vincent’s therapies every week or explaining ST,PT, OT, FE, LSS, KiGa etc.

Vince knows a lot. He is also eager to learn. Our last team meeting in Kindergarten was good and the general consensus was that his attention span has increased tremendously over the summer. One thing that we learned early on is how much Vince really learns by observing, and having peers that are ‘better’ than him has been a huge help for him and us. Things that he most certainly learned from his day care environment are eating habits, cleaning his mouth, waiting for his turn, waiting in line, many fine motor skills and much more.

Vince goes to a regular Kindergarten and is the only kid with a diagnoses there. A so-called IZB-team (therapy teams) comes there during the week. It is always the same people coming each time. Except for the times mentioned below, he is on his ‘own’ in KiGa. Our KiGa has set a side one room as a therapy room and sometimes the therapies are in there, sometimes in the main room and sometimes in the gymnastics room.
We also have the help of a gang of therapists working with us. This is what a typical week looks like for us:

Monday: 9-11:30am physiotherapy (PT) in KiGa. Our day care is great, and it is one group 0-3 year old (Edgar’s group) and one group 3-6 year olds (Vince group). Both groups have their own gymnastics/PE room complete with equipment. Mostly Vince PT is in this room and he gets to bring at least one of his friends from the KiGa group. This is something the other kids love and they all want to go to PT with him.

Tuesday: regular KiGa day without therapies. 4:30-5:30 pm Vince has dance he is in a group with only kids with DS.

Wednesday: every other Wednesday Vince has 45 minutes private Speech Therapy (ST), and every other Wednesday he has swimming from 9:30-12. His swim coach picks him up in KiGa and brings him back. This is part of Familieentlastung (FE) (Avlastning Austrian LSS). This is great, I do not know if there is something like this in the US? We have 450 per year where we get a person who takes care of Vince so we can recharge our batteries. The cost is dependent on family income, but it is cheap. We have two great people, one who has been with us since Vince was 14 months old and now the swim coach guy too. So for the swimming we only pay the hourly rate of the FE!

Thursday: 7:30-9.15 Psychiatrist in KiGa, they basically work on cognitive things and some Occupational Therapy (OT) related areas. Last week they were playing games and working on rules (of the games) and taking turns. Sometimes he is alone, sometimes he gets to bring a friend.

Friday: 8-9 am Speech Therapy in KiGa. This is the only therapy in KiGa where he is always alone and I am fine with that.
From 9:30-12:30 am he has a ‘special needs’ KiGa teacher there. She usually is in the main room with him and helps out in a more general way. Some of her goals are things like getting him to do the zipper on his jacket all alone, learning to button the button on his pants after he has gone to the bathroom and such.

That is that! Please let me know if you have any other questions about our therapies! 


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31 for 21: Day 23

Back on October 3, I asked for questions about DS or whatever to answer and here are some of them:

Sophia asked: Did Vince have problems with digestion sometime?
No, no problems at all with feeding, eating, drinking and digestion. I remember back when Vincent was 13 months old and we spent a week on Mallorca, Spain. He would eat only the totally pureed baby food jars and I remember thinking he will never progress to bigger pieces. Whenever I tried the jars with only the slightest pieces he would refuse to eat. Then one day some weeks later he tried rice and liked it, from then on he just moved onto pasta, peas, potatoes and he was fine with it.

One of my favorite blogs is I do not know what to say written by Cate, she is funny, witty and I love how she usually views standard news from a not so common angle. Her blog was also one of the first blogs I started to follow in the DS blog community. Her question was: hmm, questions about DS. Oh, here’s one – at what age do they outgrow it?
Sometimes if you cross your fingers and walk three times backwards around your house the third copy of the 21st chromosome will disappear in your child. If it is not working, walk faster.*

*they can not outgrow it.


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