Bill McClellan

Just in case anyone missed this, I wanted to post it. Back story and follow up to come.

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.

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.

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.

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.

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.

Pretty babies

Julie's mom (aka Bubba) and Isabelle each at 5 months.

The art of correspondence

Luke wrote his thank you notes for First Communion gifts a few weeks back.

Today, Luke got a very nice note in the mail:

Dear Luke,

This is in reference to your note thanking us for the money for your First Communion and asking "What'll I do with it." You may do anything you wish with the money but here are some suggestions.
     Give 10% to the poor (box at church) = $3.00
     Put 80% in your bank account = $24.00
     Spend 10% at Target, buy anything you like = $3.00

Love,

Bubba and Gramps

Shoes!

Luke and Megan picked out new shoes last week—and chose the same ones as Dad and James.

The first week

James finished his first week of Adventure Camp on Friday. He spent all day at the zoo on Thursday and was back at the Richmond Heights community center again on Friday. Though he was very sad at drop off and Thursday when both Julie and I took him, and Katie said he was sad a few times at the zoo, everyone at the camp seemed to think he had a great week.

You can read about what his group did for the week here (James was in group one). Also, there was a big photo on page 2 of the front page section of Friday's Post-Dispatch of James's friend and carpool buddy Lucy you can see here (if the link still works).

We are of course very proud of James—he went a whole week without a nap, away from home and the familiarity of school, and he tried lots of new things. Here's his last note from Friday's day:

During swim time I: played ball in the water.
During cooking I was able to: make a spider out of an oreo.
I had the most fun doing: gym because I played basketball.
At special activity today I: cooked.
I would like to be able to work on: socializing more with other campers.
Other: James had a great week at camp. Even through the ups and downs he was able to smile and laugh a lot.

Four months!

Isabelle is a happy baby, eh? She smiles all day long while she's awake, found her voice last week and squeaks, squeals, and coos, loves it when Luke and Megan read to her, feed her bottles, fight over her, and talk and sing to her. Megan is teaching her to roll over, and she's starting to roll onto her side by herself. James has come up with a way of saying a version of "Bella" and, while he'd still like to get his fingers in her eyes every once in a while, is also content to touch her feet or pat her gently. And (cross fingers, no jinxes) she's been a great sleeper so far. How sweet!

Day two ...

Highlights:

During ice skating I was able to: try to ice skate.

I had the most fun doing: gym time because I got to play baseball.

At special activity today I: danced.

I would like to be able to work on: listening to directions.

Other: I hit the ball off the tee today!

Additional note from counselor Katie:

James has been changed four times today. All four times were poop. The third and fourth change were only twenty minutes apart. The fourth diaper contained so much poop it went through his gray shorts. I put them in a ziploc bag in his backpack.


Guess two weeks of Miralax and flax seed and lots of V8 Fusion finally uncorked James. Sorry Katie!

Adventure Camp!

Okay, it's been four months since my last post. But I haven't given up. And rather than try to connect then to now in some smooth way, I'm just going to jump right in. FYI out of town family, pictures of Isabelle are being taken and will be posted.

James started Adventure Camp today—a free camp for kids sponsored by the Variety Club of St. Louis. It's offered three weeks in the summer, and we thought we'd give it a shot. The usual worries applied, but we figured that James would have fun doing something besides asking for his music toys non-stop because he's bored, which is his home routine.

Luke and Megan and I dropped him off this morning. Before I left, I watched him march around the room where we had dropped him—full of kids and teachers—in his sort of James-doing-reconnaissance way, then go up and kind of climb on the back of a counselor who was kneeling down to talk to another kid. When she turned around, James gave her a big hug. Not bad.

When we went to pick him up this afternoon, he came charging out of the gym where he had been playing ball, huge smile on his face, and gave me a giant hug. He was so happy! Here's the report from day one:

I spent time with: Katie Mace
During swim time I: was able to splash in the water and play with the beach ball.
During free time I was able to: play ball with my friends.
I had the most fun doing: swimming because I got to play ball while I was in the water.
I would like to be able to work on: participating during art class.
Tomorrow we will be doing and I need to bring: ice skating and I will need to bring warm clothes (St. Peters Rec Plex).
Other: I had a lot of fun today. I smiled and laughed almost the whole time.

Wow—ice skating! And warm clothes—it's 92 degrees at 8:30 as I finish this up.

More to follow, sooner than four months from now I hope.

The siblings visit ...

Luke, Megan, and James came to visit their new sister on Wednesday night.

James looked at Isabelle a few times, but he doesn't want to get too close to her, though he does sign "baby" when you ask him. As you can see from the series below, he also accidentally popped Megan in the eye doing "Up!"

Thanks to Grandma and Paw Paw for lots of shuttling to make it happen—and to them and Bubba and Gramps for keeping all the plates spinning on the home front.

Isabelle Suzanne

Isabelle Suzanne arrived this morning at 7:47 p.m., weighing 7 lbs. 10 oz. and measuring 20.5 inches long.

Isabelle is the 14th (and 8th girl) grandchild on the Lang side and the 10th (and 8th girl) on the Missey side. Her middle name is in honor of my aunt Suzanne, and she shares it with her cousin Lily.

 

 Most of you have probably seen these already—but I wanted to get a post on her birth day.

Predictions

The fourth orange is coming on Tuesday morning, February 8. To the chagrin of Aunt Karen, this will be the first of the Missey brothers' children not born on a prime number date—the first nine all were.

Below are the predictions. I think Grandma won for Luke, Bubba won for Megan, and James came early and I'm not sure we ever got any predictions on record.


predictions 2011 from Stephen Missey on Vimeo.


For the record, Megan thinks it's a girl, five pounds.

I've been wavering, but I'm going to go with girl boy, eight pounds, two ounces. Can our family handle two Megans?

If you want to get in on the fun, have at it—winner gets a shoutout on the blog. (Wow, what an incentive.)

Note: I changed my prediction 20 minutes after my first post. 

Highlights (don't blink)

Some raw footage from the Pinewood Derby. In the first race, Cobra Strike! is in the middle; in the second, on the far right.

Untitled from Stephen Missey on Vimeo.

Cobra Strike!

Luke's second Pinewood Derby was January 22—and like last year's Derby, we had lots of help building the car and lots of fun building it together.

Luke designed the car's shape and its color scheme, silver with a gold stripe. After picking out the Cobra stickers at the hobby shop, and trying out various names, he settled on Cobra Strike! as the most evocative of speed.

We had a car-cutting pizza party with Uncle Jerry, who supplied the saws and the cutting skill. (As a side note, Uncle Jerry's house sits atop the "Coolest Basement" poll in Luke's estimation. A collection of antler trophies, a giant wall of books, and a fully stocked work bench make it a Luke dream.) Paw Paw supplied the car wax for the axles, and Luke and dad worked on sanding the burrs off the wheels and the axle heads. Luke also did the silver spray painting and then used a brush for the gold stripe. Miss Joan (the art teacher at school) helped me with whittling out a space for the weights, and we were ready to go.

Friday night was check-in; Friday morning, Luke greeted us with a "Happy Pinewood Derby check-in day!" upon waking up. (He was a little excited.) Uncle Jerry met us, and we ate pizza and worked to get the car from 4.9 to 5.0 oz.—the guy at check-in suggested taping a dime to the bottom, which did the trick.

Luke decided this year that he wanted to do a few practice runs with his car. And you can imagine how much his excitement grew as he won his first, then his second, then his third race—he turned the car in for official check-in pretty convinced he was going to win the whole thing.

Saturday morning was race day. Each kid gets three races, one for each lane of the track, and then the speed is averaged. Cobra Strike! won its first race, then finished second in its next two heats, one of them to the eventual winning car and the other to his buddy Max's Golden Pyramid (in the middle lane, ahead by a nose).

So would Luke match or beat last year's third place? A few moments of drama, then the results were posted (thanks to Uncle Jerry for this picture; click to enlarge):

Tied for third—at 171.4 mph!

But wait—how would they distinguish between Luke and Jacob, the other guy at 171.4? Look closer, in the time column: Jacob's three runs came in at 8.652 seconds, Luke's at 8.653—and so, by 1/1000 of a second, Luke finished in fourth, and hence took home 1st place—Cub Special. What does that mean? I told Luke it meant the best combination of speed and design. And fun. Another great year.

Some other pictures:

Luke and Max

 Wolf Den 1

I don't like haircuts or ENT check-ups

This is from Friday's visit to the ENT. James hates to have his ears checked, and he hates even more to be held tightly, which is the only way to check his ears because he thrashes. He gets so mad and screams so hard that he breaks the capillaries around his eyes, as you can see from this sad photo (if you click on it, you can see a final tear rolling off the side of his chin). He looked the same way after his haircut last weekend. He stops screaming as soon as he's not being held—and there's no one trying to get at him with an otoscope or shears.

The marks on his face take about a week to go away. For his parents, they're like a slowly fading map of the emotional stress of the visit—it bothers us afterwards more than it does him.

Cast Away

It's off!

 

That's not an optical illusion—her arm is in fact still crooked. The orthopedist said that when the bone grows back, it forms a callous, a good sign that she grew new, strong bone. The callous will smooth out over time as the bone remodels itself, so the arm will straighten out over time, probably a few months.

No regular gymnastics until at least April, although he said she can start doing low beam and dance moves and other things that won't put any exertion on the arm. She can do P.E. and recess, and she has to wear a brace for the next two weeks. She also has to do a little hand therapy to get the strength and flexibility back; her ring finger doesn't quite straighten yet. But she's getting there.

Chuck Lefley

My parents, my brother Mark, my uncle Chris, and my friend Brady might remember my boyhood obsession with the St. Louis Blues hockey team. Street hockey was a favorite recess and weekend sport, with each year culminating in the Manley Cup, our New Year's Eve finale played on the old blacktop basketball court at St. Gerard, with the school building serving as one end of the rink and the concession stand the other. Unique features to our rink included a killer hill along one side that had a few places where the fence didn't touch the ground, and if the ball or puck bounced just right, someone (usually one of the younger kids) had to clamber down the hill all the way to the soccer field and then huff back up while the rest of us took a break.

When I wasn't playing, I fancied myself an announcer: Jack Buck in the summers when imagining or re-enacting Cardinals games, and Dan Kelly in the winter during hockey season. Somewhere there's a cassette tape uncle Chris made of me when I was six or seven "announcing" a Blues game that I was creating as I announced it, complete with Stag beer commercial after the end of period one. The highlight of that period, I remember from listening to it again much later, was an apparently dazzling play by none other than Chuck Lefley, who made an incredible end to end rush filled with incredible moves and close calls that culminated in a highlight-worthy goal. I must have said the name "Lefley" (which I pronounced "Le flea") 30 times in those 15 or so seconds, and while I remember thinking at six or seven that I had the sort of deep, rounded tone of my favorite hockey broadcaster, when I listened to the tape all those years later I was shocked at how high-pitched my voice was.

And it was that high-pitched voice I heard when I saw these pictures James's teacher sent us last Wednesday:

 (My favorite—look at that grip! Head down, eyes on the ball! Good solid base in the legs!)

His teachers said he had a great time, and that he was passing the ball back and forth to them. And while he didn't really jump into the larger game that was going on, apparently he did wander into it with his own ball a few times, so they stopped everyone and gave James a turn. He loves to play air hockey at Grandma's house, but he doesn't like to use the mallet, he just likes to push the puck back and forth (and he'll say "puck" if you ask him). But the teachers said that they persisted for about five minutes with the little stick, and he just got it.

When I was showing Megan these pictures after school, James came up and looked and started patting himself in the chest like crazy (sign for "That's me," or "My turn") and grinning. He's also been trying to vocalize something that sounds like "hockey" when we ask him if he likes hockey—sort of a deep throaty 'kgh' sound. Fun stuff!