All Good Things Must Come to an End

Vincent’s vacation sleep-in was just a fluke… He woke up at 5 am again this morning. I got up with him and let Bookie sleep in for once. As the place we stayed had a bathtub we took a bath at 5.10am. Vincent thought he was back in the pool, so he acted like he wanted to swim around. I guess he actually really likes it.

By 9 am we were at the conference center again. I attended a great workshop called “People with DS Ask What You Want”. It was great and so uplifting (again). There 8 people, all of course with DS, in the ages 17-28. They talked about education, jobs, money, interests and what they did in their spare time. I am so happy I chose to go to this seminar. All except the 17 year old had jobs (the 17 year old was in school still). Their jobs were kindergarten assistant, working in a kitchen (no not only dish washer, she actually prepared some of the food), working in a plant making tools, working in a home for elder, and working in an office. They worked between 20-40 hours a week. There was a woman who held the conversation, and she then asked how they got to school/work. Some walked, some rode the bus, some was taken by parents and one girl who is 21 years old drives! She is the first person in Austria with DS who has passed the driving license test and has a driver’s license. (For those of you in America, getting a license in Europe to drive is a lot harder than in the states). There is a DVD that she has been part of making that explains how she did it! Anyways, she rode her car (that she bought herself) to her job everyday. It was so cool to hear her tell the story! They all had music as an interest, and all played instruments. Some of their other interests were puzzles with at least 100-1000 pieces, reading, movies, going to the fitness center, sailing, riding motor cycles, going out, go to restaurants, swimming and painting. When we were told Vincent had DS, the doctors told us that there were many things you could do nowadays, there are good therapies and very good support. But one of the things they mentioned as an example that Vincent would not be able to do was handle money and go to the bank by himself. Three out of the eight on the DS panel in the seminar managed their own money and did not need a signature from a parent/caretaker to administer their own account. For me, this was really great to hear. Also, four out of the eight lived on their own and did shopping, cooking, cleaning etc on their own. Some of them also told stories about how they had traveled on their own.

So after this workshop I was all excited! We then went to the next workshop together about sign language. It was held by Dr. Etta Wilken, a lady who has written many books about DS and communication help for people with DS. This proved to be the most useful seminar in terms of facts for us. We learned a lot. Vincent “talked” himself through the whole class, and interrupted the professor a few times with his speech – no crying, just gaga-ing. We also learned how to sign and use multiple languages. We simply do the same sign, and when I am alone I say the word in Swedish at the same time as I sign. If Bookie is alone, he says it in German as he signs and if we are together, we say it in English as we sign it. We also bought the GUK (sign language) package that we need to get started. I am excited! Isabella, the Swedish girl told me about her daughter (who by the way also is as cute as can be) who used GUK to learn to talk. She learned GUK well and just dropped her as her speech started. She is also bilingual.

Unfortunately, all good things must come to an end. We had lunch at the center, did some more mingling and then packed us in the car and drove back to Graz. It has been an amazing weekend, and an experience I will never forget. I will definitely go back in 3 years when it is time for the next DS Conference in Austria. In the meantime, I will try to go to the one in Germany next year and see if there are other seminars and speeches about DS. I feel stronger than I have done ever in my life, and I know that without a doubt we can do this. I have learned a lot and I now know a little more how people around us can help us (signing, reading etc). And I met so many amazing people that have touched me in one way or another. And one of the greatest things was that I met so many people who have felt what I have felt/feel, and that helped me get to the next stage. We rode home in the car with big smiles on our faces, no tears, just a relaxed feeling, knowing everything is really going to be OK.

One Response

  1. […] When Vincent was diagnosed with DS, one thing I learned fast was that what most mothers take for granted, I should not take for granted. The walking, talking, schools, after-school-activities may or may not be there. The doctors were all (but one) very nice and they explained to me what DS is as I had close to zero knowledge of this before. I remember one of the doctors who really had nothing to do with us, he was not our doctor but he still took time out of his schedule at the preemie-birth station at the university hospital to set up a private meeting with Bookie and me. We talked about heart, ears, stomach, cells, genes, chromosomes and the future. He is very kind and I have a deep respect for him as he treated us with care and understanding, which was all we needed at the time. He himself has no children with DS. Anyways, one thing he explained to me when I probably for the hundredth time asked what Vincent would be able to do in the future, was that Vincent himself will have to set the limits for what he can and cannot do. Easy to say, not so easy to realize in what was at the time a very confused brain. But one thing he told us Vince for sure will need help with is banking and money issues. When we went to Salzburg for the DS conference there in October, (As you can read here) I learned that he was wrong.  In a good way! There are many people with DS that have sole access to their own bank accounts. […]

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