Choices- the Fried Egg

While Ricki can fry her own egg, sometimes, like the rest of us, she enjoys being catered to. The other day I saw that someone was in the kitchen, and asked them to make Ricki an egg for breakfast. Ricki yelled out from the living room:” I want a scrambled egg.” The person frying the egg said: “I’ll cook you a sunny-side up egg.”
“NO”. Ricki replied, “It will (drip and) mess up my blouse.”

Well, this family member made her a sunny-side up egg, and was puzzled when Ricki got angry and refused to eat the egg. I stepped in, and broke the yolk, mixed it with the white, and cooked it a speck more. This satisfied Ricki. Then I turned to the disconcerted family member.

Didn’t you hear her?
Can’t she chose the type of egg she wants?

I am very glad that Ricki did not accept the abjuration of her rights quietly.

The Good, the Bad, and a Decision to Have Compassion

Yesterday evening I went with Ricki to the fabric store. We bought cloth to sew her a dress for her sister’s wedding (in three months). We bought cloth for something very similar to what she wore for the last family wedding 4 years ago: A black top, a pink skirt (last time was red), flared, with black lace over the skirt. [ See the picture to the right, which shows the dress she wore four years ago.] As the lady showed us various samples, Ricki was very emphatic about what she liked… and didn’t like. The saleslady was impressed, and I was pleased. (I was extra pleased because it just so happened that she agreed to what I also wanted, though the choice was hers. I did limit the choice to things I felt were reasonable.) Sounds like such a big girl, no?
So then, why in the middle of the night did she make in her pants? Sometimes she can be so adult, and sometimes so small!
I was awakened to my husband’s growl that Ricki had been in the bath for an hour, and that if I wanted to save the water level of the Kinneret (Sea of Galilee), I better check what was going on. I demanded entrance to the washroom, only to discover Ricki getting dressed. However, the tub was completely blocked up from fecal matter. I decided at that point that she needed some compassion. She had made a terrific mess, but… she had also tried so hard not to wake anyone up. She had managed to exit that filthy tub 95% clean. For the next half hour, I unstopped (with a real plumber’s metal coil) the tub, and flushed out the drain pipes with a strong flow of fresh water. (Sorry about the Kinneret, but I didn’t want any gunk to stay in the pipes under the bathroom floor, to add an “aroma” to the house.) Then I scoured the tub. All this took about 35 minutes. Then I had Ricki rewash herself, get dressed, and go to bed. (She was more than willing to get up, stay up, and read a book, but I did growl at that point: “Ricki, it is the MIDDLE of the night…..”)

I suspect that her intestines can not take the summer fruits…. Or that she ate several tomatoes. (Tomatoes, being first cousins of catsup, are her favorite “fruit”.) So now she wants to sign off fruits…. But then she’ll go back to tons of bread. Seems I can’t win for losing….

PS. It would be real tempting to post just the first half, about the cloth store, and leave out the second part, which might be SO discouraging to new parents. But I want this blog to be a true picture of what life with a teen with Down syndrome can be like. And, having spoken to many parents with teens, the consensus is that even though they are usually very good at managing their toileting needs, “accidents” do happen. It could be that part of this is due to the fact that their bowl may not be 100% OK.

Eduacating the Educators

Today I gave a talk on “Family Adjustment and Coping, and Our Expectations of Teachers” to a class of special-ed-teaching students, a talk I give yearly at this institution. I always try and slip in here and there a few points that I fear these students may not have been exposed to, ideas that are a bit more contemporary to the norm here. Over the years, the teacher who invites me has asked me not to dwell on this point or another, and I had the talk pretty well set up to our mutual satisfaction. This morning, before leaving, I looked over my notes and revamped my speech. I talked a bit more about offering more choices to the children and adults that they may work with, the importance of not being patronizing, and the importance of a school to do a reality check of their work.
If you go to this address: http://www.wrightslaw.com/advoc/articles/ALESSI1.html
You will find a report on a very interesting study, showing that school psychologists will nearly always blame failure in studies as the fault of either the parents or the child. Almost never will the school step back and ask themselves:
”How can we do this differently? What do we need to do to make it work?”

I felt that it was important to broach these ideas to our future educators.
We’ll see if they invite me back next near….