I am still here… Just working on a hundred things at once J

Vincent had his hearing test today and he passed it. Yeah! So no worries on the ears, at least not yet. We also started a really cool play group. It is an integrated play group with children with no disabilities, spinal bifida, DS and autism. Great for me too. We love it!

Then, I am trying to hammer out a good enough looking budget for my projects that will hopefully start next year in fall. I will say more about it once the contracts are signed…

Plus I am working on a new blog… Mainly transferring all the data now, but I am hoping to have it up and running next week.
To add to the pleasures of life, Bookie booked a trip for all of us to Venice next Thursday. So we are off to the most romantic place in the world (at least in my eyes) for a long weekend next weekend. Fun,fun, fun!

We have had an awesome time in SwedenJ I was able to spend lots of time with my family and also meet long lost friends (TSBT aka The Swedish Bikini Team - 4 friends I met in Oxford in 1995 who I became really close to that summer in the barhopping scene and  has remained friends with ever since NO BIKINIS INVOLVED). And I also got to meet most of my other close friends. The meetings went way better than expected and I feel fully reloaded. I will try to go back in mid November or beginning of December.

Vincent is doing just great. He has now traveled by plane, train, boat and car just within the last two weeks. The train was his least favorite, but he did not cry. And hold on, he now is sleeping in his own bed at night! No more snuggle nest; he is sleeping in a crib! The first night he slept in the same bed as me, and he slept really badly. So the next night I decided to put him in the crib we have that my brother’s children have slept in most recently. Vincent slept through the night! I was amazed! We woke up both well rested, and I think he was just as ready to sleep on his own as I was, I think he actually handed the situation better than me. And tonight he slept his first night alone in his own room, in his own bed. He woke up at 7.20 J - plus one feeding in the night.

Yesterday when we flew back I sat down on the seat row in front of the seat I was assigned as I had the car seat with me for Vincent to sit in, and there was a man next to my assigned seat. So I sat in someone else’s seat. Than that person came on the plane. It turned out to be Tito Beltran, the famous tenor. He told me to stay in my seat and he sat across the aisle. He was very nice and we talked during the whole flight. He will sing Rigoletto on the opera in Graz in February. But now the little man is calling! More updates coming soon.

Anyone with experience from Worldpress.com-blogs? I was told you can start a new blog there, but bring your old info???

Vincent’s therapist came yesterday and worked with him again. We got some new exercises to do and next time she will start using picture/photo cards during his training. I am not sure yet how it works, but I will find out!
In the afternoon we had swimming and we did the first attempt at putting the head under water. Vincent reacted by filling his lungs and having the loudest scream I have ever heard from him. To his defense almost all babies cried. But I decided that he had gotten enough of the pool for one day after that and we got out and snuggled instead which he liked a lot better and he was soon as happy as can be. J

A cool thing that happened was that they called from the company that does his therapy (it is a private company), and they asked if they could use a picture of Vincent and his therapist for the cover of a brochure and some posters. The brochure is about the therapy/special training for children with different handicaps and they will use it to promote that type of education at the University of Graz. Of course we said yes. Neato!

Vincent and me are flying to Sweden today and will be gone till Oct 15^th so we will be blogging sporadically from there!

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.

On Saturday Vincent amazed us by sleeping till 7 am. So well rested we walked around in downtown Salzburg and saw some sights. It is a really beautiful city and we decided to come back for the Christmas market in December. It was fun to be touristing again with Bookie and of course with Vincent!

In the afternoon we had two workshops on communication (sign language and early reading skills for children with DS). They were both really interesting, but a little too theoretical. And the sign language class focused a lot on kids who may not learn to speak at all. But it was still interesting. But a great thing was that the lady (therapist and mother of a 17 year old w DS) who held the sign language workshop is working at the same place as Vincent’s therapist, so she is a local here in town and we talked to her afterwards. She told us to come by any time if we wanted to talk.

At night we had dinner at the conference center again and we got to know Peter, a very good drummer, and a 21-year-old with DS. He had played at the opening ceremony the night before and we had the honor to sit at his table on Saturday night. After a while his parents wanted him to come with them to the church of the evening service, but he wanted to stay and hang with us, mainly with Bookie. We said he could, and he stayed and talked to us. By now, many people had left. A little boy probably around 7 years old (also with DS) walked around to all tables and played waiter and asked what we wanted to order. He then told us we had to change seats before he could bring the food. It ended up being a great Meet and Greet session, and I met a few other mothers J However, something funny happened to us as soon as Peter’s parents had left. They had just walked out the door, when the real waitress walked by and asked if we wanted something else. Peter immediately ordered a large beer. Not a small or medium, a very large. Bookie and I, being total rookies in the DS world, had no clue if this was OK or not, so Bookie asked Peter if this was OK. He said “Sure, My Mum lets me drink beer”. So we figured that it was OK. (It later turned out that it was OK). We spent the next hour with Peter and it was great for us. A relaxed evening, where we learned a lot, laughed a lot, and really enjoyed ourselves. Before we left, we decided to meet Peter again on Sunday.

We are back! We had an excellent time in Salzburg. I am so excited, overwhelmed and filled with god vibes. It was amazing to meet all the other families and people with DS. I will make more than one entry to try to catch it all! This enrty is about day one.

So to recap, we got there on Friday and started with meeting a really nice family from Linz. They had a 3 year old (DS) daughter, cute as can be, called Livia, who was quite a character. Then we went to a really great presentation called “Children (with DS) Need Parents that Set Limits” with Dr. Jan-Uwe Rogge (a great, funny, charismatic person who is also an author and Family Therapist). He made us laugh a lot and people had traveled from near and far to see him. Apparently he is known for his uplifting attitude. What I did not realize when I booked this session was that it was 3.5 hrs long, so Vince and I left after 2 hrs, and Bookie stayed. We then ran into a Swedish girl who was a mother of a 4 year old (Annika) with DS. So me and her chatted till Bookie was done with his presentation.

After that it was time for the opening ceremony, and it was awesome. It was held by the father of a DS child (who is also the husband of the woman who started the whole DS Organization in Austria, 12 years ago when their daughter was born) and an amazing woman Lisi who has DS. The wife of the Austrian President was there as she is an honorary member of the Austria DS Organization along with the mayor of Salzburg and many other local famous people. But the funny thing was that Lisi was going to interview the mayor, and told him she had 2 questions for him and asked if he was ready. He said he was and she then asked: “Do you like living in Salzburg?” The mayor looked totally confused as he explained that was not a question he had expected. The whole audience laughed. Her second question was “Do you rather not speak about your personal life or can I ask you questions?” Again laughter, as the mayor answered No thanks.

She then continued the interview with such questions as what they do for DS/handicapped people in Salzburg etc etc. She did awesome. Then came the movie! It was really great, rather short – more like a music video, and I am going to try to put it on my web page as soon as I can figure out how J I am so proud of my little Prince. Vincent was the youngest participant at the conference and as he was with us the whole time and not in the childcare area, many people came up to his stroller and chatted with us/him. So when they saw him on the screen they looked at us and asked if it was him. We were/are so proud. Many people also came up later during the weekend and told us they had seen him and of course said he was really cute. Really cool.

It was a great weekend, and exactly what I needed to move to the next step in the whole DS process. I feel like my battery has been recharged and we can beat the world once again. I was not running empty before, but it has been really uplifting to become part of the DS community where we live. When I went to bed on Friday I was feeling happier than I have felt in many years. I was so happy; it really feels like I won the jackpot in the genetic lottery.

Vincent did us a favor and slept late this morning and did not wake up till 6.00 am. We went to a very nice dinner at Didi’s last night, and stayed way past all of our bedtimes, so it was really nice not having to get up at 5 am. Didi showed us some cool pictures from his latest trip to Mount Blanc, which he climbed in August. Pretty neato!

Vincent also had his bi-weekly therapy session this morning. He had taken a long nap (fell a sleep all on his own in his own bed - yeah for the Tiny Love Mobile) and was well rested. He was giggling and laughing and doing great! In the beginning of this whole therapy circus I was a little weary of my own responsibilities with the therapy. In order for it to work, it is important that Bookie and I also practice with Vincent between the sessions. I was afraid I would not do it, just because I would not know how to, or it would be complicated, or I would simply forget. But I actually do the exercises with him every day, and so does Bookie. It is easy to tell that Vincent is enjoying it, and it is actually great play time help for me! The best part of it is that I can now see the result and how much progress he is making. He is working so hard and doing so great! Like last week he got the “crawling roll”, and one of the things that he would learn from it is to support his own weight with the hands. For example if we fall forward we catch ourselves with our hands. This is a learned reflex that newborns do not have. So last week, Sophie our therapist, showed us how he can learn it and what exercises to do on the crawling roll. Yesterday Vincent had learned it, and today he showed off during the therapy session. I am so proud of my little Prince. Tomorrow morning we are off to Salzburg for a long weekend and a 3-day Down Syndrome Conference. Vincent is part of the opening movie that will be shown. I do dare promise that he will do just excellent, more questionable is the appearance of his post-delivery looking mother… We will be back J

Last night I dreamed that Vincent and I were going to join David and Victoria Beckham as they checked out the latest fashion of the catwalk. I was really proud of my outfit that I had topped off with my green Marc Jacob’s purse. Victoria aka Posh Spice and David were discussing if the shirt should be worn inside or outside the pants using jargon I did not understand. In the end Victoria won as she had studied that at the University. I asked what they thought about my Marc Jacob’s purse and Victoria said it was OK for a beginner. I told her that green was the new “in” color this fall. She just smiled and told me we were going to look at the upcoming spring collection.