13 November 2011

At the Waisman Center yesterday morning for a Morning with the Experts. The topic is downs syndrome, something I know nothing about and so very good for some basic understanding. One of the studies that Waisman is doing is regarding the stress to families with kids with DS. What of Mindfulness? Interesting to see applications of the little that I know springing up all around me. I am stirred to dismiss such ideas as too easy, too evident, and excited by the possibility that I may have found something that I can bring to that rich table.

Listening to the standard introduction, Marsha Mailick Seltzer, director of the Waisman Center, gives her short history of Waisman. I now I have heard this story at least 4 or 5 times before in the past two years. I recognize all the pictures. How did I miss the fact that Dr. Waisman died at 58 just before the center opened? And I wonder how many facts, ideas, and wonderings I protected myself against last year. How much cut too close to the bone to be taken in. I felt the keen sadness of losing Dr. Waisman just before the center was opened.

A few notes for future use:

Anita Bhattacharrya, PhD. Stem cells. Embryonic stem cells. Tissue specific stem cells. Reprogramed stem cells. Research on stem cells during gestation. Synaptic communication and reduced neuron communication in embryos with DS factors.

Changing Mind Foundation?

Brad Christian, PhD, and Sigan Hartley, PhD. Studying the natural history Alzheimer’s Disease in adults with down syndrome. Brain imaging. Neuropychological profile of asystomatic adults with down syndrome. By age 65, 50% of people with DS have AD.

Interesting that the day with the experts that focuses on autism is usually so full that if you don’t do pre-registration you can’t get into the lectures. For DS that auditorium is less than half full. Not sure why.

DS society sponsors bike camp. We have to do this next time round.

The day continued in richness. I’ve just finished a week long fast -- well, 6 days, broken with a few nuts late last night after coming home from the theater. It was one of the best fasts I’ve even been on, but during the week I felt a great agitation, an impatience with the pace of stimulation in my life. Like I was moving through that jello. I was both bored and exhausted. I have slept badly during this entire week and it continued last night. My acupuncturist talked quite out of the blue of my great adventure. I have felt in the preparation mode all week -- not simply for my travels in the next few weeks but for what is coming next. “Could be, who knows . . . “ I am singing in my head.

Julia and I spent some time outside in the afternoon -- she with her bugs that are increasingly hard to find and me pruning back the garden and raking. I am finally finished with all of the garden beds and did another round of raking, although by the time I came home from the theater last night, I could see my very clean front lawn was littered with just as many leaves as I had piled neatly at the curb. I need one more raking of the back garden which I hope to get in before I leave on Friday. If not, there will be snow to contend with.

I was riding around further west last week after we had that first dusting of snow. One neighborhood had snow on their lawn and I thought how wonderful that they had all gotten rid of their leaves before the snow. Of course, then I realized that there were probably plenty of leaves beneath that clean layer of snow. Leaves to be forgotten about. Next spring’s challenge.

The season is turning. Whether or not I am ready for it. As always. As it should be. If the task is not done, if the lesson not learned during this season, it will lie in patient waiting to be picked up in the spring.

Mary and Robert responded to my call for rescue last night and stayed with Julia while I went, with my neighbor, to the theater last night. I saw The Farnsworth Invention, by Aaron Sorkin, and throughly enjoyed the experience. It made me miss theater in a way that I had not felt in years. I loved the words as well as the production. It made me think of the best of my experiences -- working in and watching theater. It made me think how much David would have enjoyed the production. His play, his talent found a good home in Madison -- The Forward Theater keeps my interest. I am hesitant to write but I feel at the moment, that I would like to do something, give some time, some energy to that endeavor.

And one last thing before our day begins -- Julia and I spent a bit more time yesterday working on math facts. I am going very, very slow but hoping that she can memorize math facts the same way she began reading by memorizing words two years ago. We worked a few weeks ago on the 0’s. First learning and then making flash cards for 0+1 up to 0+10. Then, I explained the commutative law of mathematics (Commutative law of addition: m + n = n + m. A sum isn’t changed at rearrangement of its addends.) without using those words, of course. And then she had 10 flash cards that we have been rehearsing with. She is very proud of herself for knowing these facts. Last week, we worked on the 1 +’s up to 5, and yesterday, we work on 6 through 10. We have months of work on this to do, but yesterday, for the first time, I saw a glimmer of a spark when we physically worked out 6 +1 and then 7 +1, and then she guessed at and then knew 8, 9, and 10 plus 1. She is still tentative with this discovery, but she was finding pattern and applying logic. It was a quiet time, very quiet, but extraordinary. I wanted fireworks!

Julia has had such a hard few months, and this past week, her behavior has been deteriorating. It makes me both angry at time for her, and sad to see gains and progress being seemingly destroyed. And then, we get a day like yesterday, when the leap forward blows my mind. It also makes me more convinced that to give Julia the best chance to go as far as she can educationally, she must stay in the safe and nurturing environment that she is in for an additional year. More intensive therapy and another year of fourth grade. Her teachers are concerned that she has made a place for herself in this group of kids this year, but I am feeling that she will do that again next year. Do it better. Perhaps find a bit more of a fit socially with another year.

When I spoke with her art teacher last week, she said that Julia fulfills all of the requirements for art class -- Julia meets the regular goals for that class, but just in her own way. In her own way. In her own way. The first big art project of the year came home last week -- a monochromatic self portrait done in water colors (At least I think it was water color). Julia’s picture did not make the neighborhood art show, I never saw it up on one of the school bulletin boards. Yes, like me, like always, I want that regular praise and prize for my talented girl. But what came home was this very jaunty, happy, spirited green dinosaur. An incredible self-portrait. I laughed out loud when I saw it. It was so perfect. In her own way. Indeed.

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