Thursday, November 3, 2011
Bill McClellan
Just in case anyone missed this, I wanted to post it. Back story and follow up to come.
Monday, October 10, 2011
KECC week of Oct. 4
We've been getting weekly updates from James's teachers and therapists—thought I'd post the most recent one.
Greetings | We didn’t get the greetings to Kathy like last week but he was definitely aware of people coming and going both in his line of vision and even in the classroom as a whole. |
Choice Making and Follow Thru | On Wednesday Kathy saw James for me because I was out sick, her are her thoughts. When I had James at lunch time, we worked on matching with his learning program pictures on the iPad. He did well, except when he kept pushing buttons at the top to take him to a different screen that we were working on. He did match with 70% accuracy, of the ones he completed. He also enjoyed watching another student and staff member playing ball and laughed when the ball went up high! He was very physically active, and so I had him swing for about 10 minutes. He seemed to enjoy it, however afterward he was not any less active. She worked on him imitating more, all done and go but didn’t get any results. |
Gross Motor (PT) | Went on the bike to the upper playground soccer field track on Monday nearly pedaling the whole way. Climbed the rock wall on the playground and swung on the swing. On Thursday was requesting GO on the platform, repeatedly with a prompt of ready, set and he completed it. He requested multiple times for more swing and he stayed on without trying to get off he also enjoyed playing peek a boo with Barb as well J |
Yes and No Responses | On Monday I was able to get two yes responses to if he wanted a particular musical toy (xylophone) |
Imitating/Initiating Sounds | |
More/All Done | I got an all done on Monday with lunch as well as during our matching on the IPAD |
Ball/Doll/Car PLAY | Lorrie and James had very successful turn taking with the musical drum he likes, I am putting it here because of the turn taking. James was sitting on the bench and Lorrie on the floor. By the end of their time (about 10 minutes) James was tapping his chest for when it was his turn, as well as passing the drum to Lorrie. Lorrie stresses that he was also using both hands to actually play the drum creating the output for the noise vs. just listening to the music. |
Computer/IPAD | On Monday we just worked on the IPAD after he finished eating. James had several bites of the steak as well as mashed potatoes. We did matching and he got 100% on the 1st two boards we did. We also did some doodling about 45 seconds, longest I have gotten from him on the IPAD so far. We did several sounds on the Sound Touch app but didn’t get any imitations. We ended things with the Old McDonald song and James was very motivated by it and did many of the “actions” on the IPAD without prompting. |
Fine Motor & OT | JM: James and I are working on some consistent fine motor routines with the I-pad each week and for the first time today, he attended to the I-pad activity and did not want to keep changing it back to another screen. He seems to pick the first 1 or crayons or pegs and readily attempt to color/put them in the foam board and then needs much more encouragement to participate in the last few. He colored a leaf today and did well with that. He has copied some vertical and horizontal lines recently but did not do so today (Thursday) |
Classroom Facilitation | Suzie works with him on Mondays, spending some time in the classroom and then facilitating in Motor Group. Here are her notes from Monday: The highlight of our time was the Motor group. The entire 20 minutes was, in my opinion a great success! James sat at the circle and waited while Tim gave directions. James and I had only done one 1 minute motor activity before going to the circle, as opposed to last time when we played while directions were given. James allowed assistance to put his "vest" on for his team. Tim let James start the soccer game by kicking the ball to put it into play, and James gave the ball a good kick. He (we) ran along with the others as the teams kicked the ball around the gym, and once or twice James got another chance to kick the ball. James was smiling and engaged throughout the activity. When it was time for the two teams to sit down on the mat on the sidelines and watch the other teams have a turn, I wondered how James would do. He took his vest off with a bit of help and sat on the mat in front of me. James scanned the ball as it was kicked across the floor by the new teams! He followed the game, not losing interest and smiling as he watched! He was as engaged in watching as he had been in playing. When the game ended, James lined up with his peers and put his arm out straight for Tim to stamp his hand with the elephant stamp. He waited for his turn and stayed in line. I was glad to see James have such an enjoyable and meaningful experience. |
Friday, September 30, 2011
Finest Worksong
Here's Prep News article about a new hire at SLUH—the first person to staff a position I worked to create through last year as part of my professional development. We're going to call it the Vocational Resource Program—it's starting with one position and will grow over time, I hope. The idea is to create jobs at SLUH for adults with developmental disabilities, with benefits for the individuals and our community.
Saturday, September 24, 2011
And she's off ...
Isabelle started crawling a few weeks back. She went from rocking straight to the all-fours hands and knees crawl, and she's pretty efficient—quick across the room if someone leaves a shoe on the floor or opens the front door or drops a Cheerio. She has figured out how to get up the step from the family room to the kitchen, but down is still a face-first flop if she gets there faster than we do.
Sunday, August 7, 2011
Getting down
During one of the first weeks of summer, I found myself one day on pick-up duty for Luke and Megan's Bible Camp at St. Peter's. I don't remember if Julie was working or where she was, but I had James and Isabelle with me by myself.
It was probably one of the first times I was trying to travel with all four kids and no partner to lean on for help. Simple enough task: get into the gym, get Luke and Megan, get back out and home. But when we got there, I realized that getting to the gym from the parking lot requires two flights of steps down from street level, then up a step into the gym lobby. The flights aren't huge; maybe 6-8 steps each. But it ruled out the stroller, meaning I had to carry Isabelle in her car seat in one arm and hold James's hand and navigate him down the steps with the other.
As we crossed the street and approached the steps, I was sweating and feeling helpless and angry. Other parents and kids were streaming effortlessly up and down the steps. "Steps" didn't even look to be a thought in their minds or a care in their worlds. I wondered if I was having a moment like one of our priests, Fr. Mike, must have daily—he's in a wheelchair from a car accident a long time ago and while St. Peter's has made a number of accommodations during his time there, it's still a tough world when you can't get up and down steps. (When Luke and I were at the evening Mass on Good Friday, a tornado warning sent everyone to the basement—everyone, that is, except for Fr. Mike, the celebrant, who couldn't get to the basement because it's only accessible by steps.) And if my little moment crossing Jefferson Ave. in early June is any suggestion of what Fr. Mike feels about steps and the people who take them, it must be really hard for him not to be pissed at and jealous of the sweet obliviousness of our carefree relationship to them.
So the closer I got the more I felt like there was no way I was going to be able to help steer James down the steps using my left hand while hanging on to Isabelle's car seat for dear life with my right arm. I had no idea what I'd do if James suddenly decided to do one of his go-limp flops in the middle of the street or on the steps themselves. But we started down the steps, one slow one at a time, and James held on to the railing with his left hand and didn't flop. It was slow and painful—the hard plastic carseat handle was wedged into the crook of my arm, which was going numb from the pressure and the weight—but we made it. Once we got inside, I had another panicky moment when James finally did flop at the entrance to the gym because there were tons of people and noise and he hated it—but luckily first Megan and then Luke saw me and I didn't have to get all the way across to their little groups. The ascent on the way out was no less painful but at least I was pretty sure we'd all make it.
That feeling—the one I had crossing the street—became a kind of metaphor for me for a while this summer. Why do so many things with James seem so hard to me sometimes? Why is it even so hard for me to say out loud that it is hard, or frustrating? Why does every little, well, step have to be so deliberate and take so much work and emotional energy and even guilt?
So I kind of chewed on that metaphor off and on all busy summer long—thinking of all the steps, all those now-much-harder-to-get-to places that seem easy to everyone else. It's hard to articulate this feeling exactly without sounding like it's a pity party—it's more like a low level background teeth grind that can go quiet for long stretches but just as easily hit a sudden intensity. I just get very frustrated, I think because I feel very helpless. It's not that I don't feel that way about our other three, because I do, all the time. (Of course I don't feel only this way, and I don't feel only this way with James.) It wasn't Isabelle that made me feel all of that anxiety that morning—though it was trying to transport her in carseat without stroller that gave the trip its higher degree of difficulty. But there's little anxiety for me about Isabelle's progression towards the world of the steps; with her and the others, I get to be one of the sweetly oblivious, at least most of the time.
It was probably one of the first times I was trying to travel with all four kids and no partner to lean on for help. Simple enough task: get into the gym, get Luke and Megan, get back out and home. But when we got there, I realized that getting to the gym from the parking lot requires two flights of steps down from street level, then up a step into the gym lobby. The flights aren't huge; maybe 6-8 steps each. But it ruled out the stroller, meaning I had to carry Isabelle in her car seat in one arm and hold James's hand and navigate him down the steps with the other.
As we crossed the street and approached the steps, I was sweating and feeling helpless and angry. Other parents and kids were streaming effortlessly up and down the steps. "Steps" didn't even look to be a thought in their minds or a care in their worlds. I wondered if I was having a moment like one of our priests, Fr. Mike, must have daily—he's in a wheelchair from a car accident a long time ago and while St. Peter's has made a number of accommodations during his time there, it's still a tough world when you can't get up and down steps. (When Luke and I were at the evening Mass on Good Friday, a tornado warning sent everyone to the basement—everyone, that is, except for Fr. Mike, the celebrant, who couldn't get to the basement because it's only accessible by steps.) And if my little moment crossing Jefferson Ave. in early June is any suggestion of what Fr. Mike feels about steps and the people who take them, it must be really hard for him not to be pissed at and jealous of the sweet obliviousness of our carefree relationship to them.
So the closer I got the more I felt like there was no way I was going to be able to help steer James down the steps using my left hand while hanging on to Isabelle's car seat for dear life with my right arm. I had no idea what I'd do if James suddenly decided to do one of his go-limp flops in the middle of the street or on the steps themselves. But we started down the steps, one slow one at a time, and James held on to the railing with his left hand and didn't flop. It was slow and painful—the hard plastic carseat handle was wedged into the crook of my arm, which was going numb from the pressure and the weight—but we made it. Once we got inside, I had another panicky moment when James finally did flop at the entrance to the gym because there were tons of people and noise and he hated it—but luckily first Megan and then Luke saw me and I didn't have to get all the way across to their little groups. The ascent on the way out was no less painful but at least I was pretty sure we'd all make it.
That feeling—the one I had crossing the street—became a kind of metaphor for me for a while this summer. Why do so many things with James seem so hard to me sometimes? Why is it even so hard for me to say out loud that it is hard, or frustrating? Why does every little, well, step have to be so deliberate and take so much work and emotional energy and even guilt?
So I kind of chewed on that metaphor off and on all busy summer long—thinking of all the steps, all those now-much-harder-to-get-to places that seem easy to everyone else. It's hard to articulate this feeling exactly without sounding like it's a pity party—it's more like a low level background teeth grind that can go quiet for long stretches but just as easily hit a sudden intensity. I just get very frustrated, I think because I feel very helpless. It's not that I don't feel that way about our other three, because I do, all the time. (Of course I don't feel only this way, and I don't feel only this way with James.) It wasn't Isabelle that made me feel all of that anxiety that morning—though it was trying to transport her in carseat without stroller that gave the trip its higher degree of difficulty. But there's little anxiety for me about Isabelle's progression towards the world of the steps; with her and the others, I get to be one of the sweetly oblivious, at least most of the time.
Tuesday, August 2, 2011
A drug for Down syndrome?
Interesting article from Sunday's New York Times magazine here.
Makes a few references to Down syndrome as a "disease" and to "Down syndrome baby" or "Down research" and the like, but thought-provoking article that makes me consider the murky territory that lies between the courage to change the things I can and the serenity to accept the things I can't and how unsettling moving along that spectrum can be.
The idea of a drug that affects brain chemistry to facilitate learning is very tantalizing. As this article mentions, however, the other scientific "solution" that's out there right now is a noninvasive prenatal blood test that will make routing testing for Down syndrome during the first trimester much easier—a test that the article refers to as being run by "a competing set of scientists [who] are on the cusp of achieving an entirely different kind of medical response to Down syndrome: rather than treat it, they promise to prevent it."
Two sides of the "faith in science to fix the problem" coin that seem inseparable though I want the benefits of the one without the moral ugliness of the other.
Makes a few references to Down syndrome as a "disease" and to "Down syndrome baby" or "Down research" and the like, but thought-provoking article that makes me consider the murky territory that lies between the courage to change the things I can and the serenity to accept the things I can't and how unsettling moving along that spectrum can be.
The idea of a drug that affects brain chemistry to facilitate learning is very tantalizing. As this article mentions, however, the other scientific "solution" that's out there right now is a noninvasive prenatal blood test that will make routing testing for Down syndrome during the first trimester much easier—a test that the article refers to as being run by "a competing set of scientists [who] are on the cusp of achieving an entirely different kind of medical response to Down syndrome: rather than treat it, they promise to prevent it."
Two sides of the "faith in science to fix the problem" coin that seem inseparable though I want the benefits of the one without the moral ugliness of the other.
Saturday, July 23, 2011
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