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I suck and Mikey's therapy
November 05 2006, 11:04 AM
[ Category: Down Syndrome ] [  Mood: Angelic ] [  Currently: Listening to Simple Minds ]
I suck... 4 days into the month and I already screwed up the "blog every day" meme. Saturdays are so hard to do anything on the computer. It's just a busy day.
I took Mikey over to ACDS for his socialization program. It runs 4 hours on Saturdays from 10 AM to 2 PM which is a pretty good break. But Beth wanted her hair colored for her birthday (dark blue this time) so we had to run over to Utopia to pick the hair color and then to the hair salon. It took three hours to bleach her hair to get the old color out, put in the new color, and then get a cut and blowout. I would have gone home but Beth doesn't like to be left alone. Anyway, it came out great. I'll try to get a picture later.
At 2 PM I picked up Mikey to take him to music therapy. John no longer works Saturdays because his wife had a baby and he wants to spend more time with his family, so Reika (one of his former students) is now Mikey's therapist. The session went very well. Mikey is really getting vocal for Reika.
Posted By: Tom 6 Comments (Post your comment)
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Romping for Down Syndrome
October 11 2006, 9:51 PM
[ Category: Down Syndrome ] [  Mood: Happy ] [  Currently: Watching Baseball ]
Sunday was the Romp for Research at Asphalt Green in Manhattan. We were late and I think Mary was getting worried but we made it. It turned out to be a beautiful day and a huge crowd showed up. I think Mary said that there were 400 people and they raised over $100,000 after paying for the Romp!!! The location was perfect. There was a section with picnic tables and then there was another section that was like a big artificial turf soccer field. The whole place was fenced in so that we didn't have to worry about Mikey escaping and getting into traffic. This was Manhattan after all. There was plenty of food and soda and free t-shirts and goodie bags.
Michel and I received the "2006 Romp for Research Recognition Reward" for our work on the website. The plaque (I have a picture of it to post) is sitting on my dresser because we haven't figured out where to display it yet. We are thrilled to have been given this award but Mary deserved the award for running this fantastic event!
Beth finally got to meet Mary's daughter, Libby in person. They have been exchanging emails for awhile but this was the first time they actually got to meet. Libby is a really sweet, petite girl. Even though she is the same age as Beth, Beth towers over her. I have a picture of them together that I will post when I get it on the computer. I think they really liked hanging out together.
Posted By: Tom 0 Comments (Post your comment)
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Things I don't need to hear
October 02 2006, 2:57 PM
[ Category: Down Syndrome ]
Saturday night, Michel and I got out for a change. It was Michel's high school reunion and she wanted to go to see what happened to everyone. It was a very nice party although we couldn't dance (surgery) or drink (medication) but the food was excellent and the people were very nice.
Anyway, being the husband I ended up sitting in the corner with a couple of other husbands. One of them is a friend and the other is someone I just met that night (I will refer to him as the new guy). The new guy was very proud of the fact that he was a Manhattan liberal and had a very high opinion of liberals (such as himself) and a very low opinion of everyone else on the political spectrum. Which is fine. I have no problem with people being boorish at parties since it is unlikely that I would ever see this person again. But then he said something that really offended me and I chose to ignore him for the rest of the night.
My friend and the new guy were discussing religion and my friend commented that religious people often think of themselves as being special. The new guy piped up, "Yeah, special as in the 'short bus'," referring to the smaller bus sometimes used to transport children in special education programs. So this Manhattan liberal who would never in his wildest imagination consider the possibility of his being racist or sexist and would never consider the possibility of making a joke about African-Americans or gays had no problem with making a joke about children in special education programs.
Fortunately the new guy has no children and with the age of his wife it is unlikely that he ever will. Some people just shouldn't breed.
Posted By: Tom 3 Comments (Post your comment)
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A Child With Autism
September 02 2006, 10:08 PM
[ Category: Down Syndrome ] [ Mood: Happy ] [ Currently: Watching ]
Adrienne, Russel's mom, started a topic recently. I don't want to cover the topic (you can go the the link to read Adrienne's post and the responses - it's well worth it) but rather a particular line in one of Adrienne's posts:
| Quote: | | But.. then I hear my son giggle.. and I realize what a joy he is... and although it breaks my heart sometimes... to see him in his world, he is my son and I love him so much, more than words can tell you. |
To me, she has beautifully expressed the feelings of a parent of a child with autism. She has expressed perfectly my feelings for Mikey. When I see Mikey in his own world, shaking a towel endlessly or insisting on playing the same part of one of his PS2 games over and over again, it does break my heart. When I see how much difficulty he has with social situations and think that Mikey will never truly have a friend, it breaks my heart. When I read about so many of the children on DownSyn who are so much younger than Mikey and yet are doing so much more it sometimes breaks my heart. But then Mikey will see me and get a huge smile on his face and wrap his arms around me and hug me as if he is hanging on for his life. He will laugh and sign with me when I sing, "I love you, a bushel and a peck". And then I remember what a joy my son is, how much love he has, and how much I love him. When I read what Adrienne wrote I understand perfectly what she means, I understand the pain and the joy that comes with having a child with autism. It is a feeling that no parent can truly understand unless they have been on that road.
Posted By: Tom 1 Comments (Post your comment)
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Shocking Things in the Media
August 30 2006, 11:02 PM
[ Category: Down Syndrome ] [  Mood: Shocked ] [ Currently: Watching ]
A couple of days ago, the NY Post referred to Paris Hilton as a celebutard obviously playing off the words celebrity and retard. The latter is a word that is very offensive (so offensive I don't even like looking at it) and yet the Post thought nothing of using the term. And it isn't the first time they have used the term. I wrote a letter to the editor but I haven't heard back from them.
And then yesterday a radio station in Ohio had a contest to see who could identify the song sung by Mongoloid Mike, one of the station's DJ imitating his idea of a person with Down syndrome. The radio station management was quick to apologize (apparently the president of the local Chamber of Commerce had contacted them) but it was one of those corporate non-apologies. At least it was better than nothing.
Posted By: Tom 1 Comments (Post your comment)
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