Transition

I've got a whole list of posts swirling in my head to write -- I guess I ought to at least get something written, and maybe the rest will fall into line in the coming days.

It's interesting -- in the world of developmental disabilities and special education, the word transition has come to have a specific meaning: it's the big Transition from school out into the adult world. There are transition-planning manuals, and transition-planning conferences, and transition-planning laws (in Wisconsin, for example, transition planning has to start in the IEP team at age 14, and at that age the student must be invited to participate as a member of the IEP team.)

Heh.

We've got a huge transition going here, folks, but it's into school instead of out of it.

Transition-into-kindergarten planning for Joy started a couple of years back, when we made the decision to wait an extra year, so that with her early-summer birthday she'd be one of the oldest kids in the class instead of one of the youngest. Back in February, I described the steps we took to get Joy some formal kindergarten practice, spending several hours of each Tuesday afternoon at the school with her early-education therapists.

In April, we had a big summit at the elementary school to put together Joy's IEP, the Individualized Education Program that spells out goals for the upcoming school year, and what services she'll receive that will help her work toward those goals. Looking back now, I guess I never did blog about that meeting. It was a huge meeting -- Joy is going to have a LOT of staff working with her. She's going to have one-on-one attention all the time, safety reasons being paramount but also because that's what it's going to take to work with her in a classroom -- and the school district seems to have quite the commitment to working with kids in the regular classrooms, as much as ever possible.

So far, things seem to be falling into place pretty neatly. Joy was assigned to the teacher whose classroom she got to know in the spring, a fellow with a gentle demeanor who has been assigned clusters of kids with IEPs for the past couple of years. One of her (typically-developing) classmates will be from a family we're in good contact and on good terms with, so that's a fine development. Her special-education lead teacher has had the chance to visit her at daycare for a couple of hours, and will be visiting at home the day before school starts to get acquainted. Joy has had a couple of visits to school, seems comfortable in the classroom (at least when there aren't any other kids there, heh), got to meet the new principal, and got to try potty-routine in the hall-bathroom.

We've got another summit with school staff coming up Monday, not an IEP meeting but a chance to share a home-grown document full of details about the amazing progress Joy has made over the summer, and tips for lunch, and a list of the songs she knows and can fill in words for.

And a list of the new challenges. There are some big ones, and it's more than a little scary.

The top two are: head-banging, and hitting/hair-pulling/pinching of peers and adults.

Just what you want your kid to develop in the months before kindergarten, no?

I think I'll just leave that there. These are switches that we desperately want to flip the other way, as soon as possible. A new environment and routine might do just that -- or it might escalate these behaviors to whole new heights.

Meanwhile, this is all quite a major transition for me. I wrapped up my summer-job yesterday, so I will truly be going back down to half-time again, as opposed to the 75% time that I've been squeezing in for close to a year. All those work hours will now take place during school hours, so I can do drop-offs and pick-ups for both girls at school, and eliminate the need for after-school paid care. A very different routine for me.

Think good thoughts for us. This transition may not be THE big one, but it's pretty much the biggest one so far.

Conference Report, Part 1: Paula Kluth

I almost feel like I should say "Didja miss me?" yet again. It's been a very full week since returning from the Autism Society of Wisconsin (ASW) conference a week ago Friday. Many spinning plates, and per usual many are Joy-related, from conversations about inclusion at church to the fact that we've got her IEP meeting this afternoon to plan for kindergarten in the fall.

But I promised some conference-reportage!

One lovely piece of convergence at the conference was that Joy's itinerant special-educator, who leads Joy's school district team and has been coordinating the IEP prep, attended the first few days of the conference as well. I'm loving the fact that the person with whom we're writing Joy's first ever official behavior plan... also attended the conference day-long workshop with Paula Kluth, a session called The Problem with "Behavior Problems:" Supporting Students with Autism & Other Disabilities. [Note - I'll be calling her by her first name, as I did with Temple Grandin and Eric Courchesne, though in each case the more formal choice would be the title "Dr."]

Paula put "Behavior Problems" in quotes in her title on purpose. It seems that throughout her career around these issues, she's been wanting to write and speak about the "supporting" emphasis while publishers (and conference producers?) bring the pressure to use language that explicitly references "behavior." Which makes sense with the generally-used language -- Joy's going to have a "behavior" plan and all that -- but I love the move to change the conversation.

One way in which the workshop enabled that conversational change was to challenge the attendees to do some self-reflection. For example, one set of questions that we discussed in small groups was "When do you behave badly? What helps you "recover" from your own bad behavior? What is one effective and positive behavior strategy that you have used?" I bet that nobody had trouble coming up with personal examples; I know I didn't. Attendees reported behaving badly when they're hungry, tired, offended, stressed, overwhelmed, when people won't listen, when they're having a hot flash!

Then Paula asked these questions around effective strategies: Did anybody say, "I can't calm down until...

• someone drags me away?
  
• someone enforces an immediate negative consequence?
  
• someone yells at me enough?

So why is this the kind of strategy that so often comes into play for students with disabilities? when what really helps the conference attendees in their own "behavior problems" is more along the lines of: have a snack; change of venue; exercise; walk away; etc?

Really, who among us wants someone to come along and try to "change our behavior" anyway??

But we can all use a little helpfulness and support along the way. The reframed question, as the presentation put it, becomes "How can we effectively and sensitively support individuals with disabilities?" or more broadly, "How can we be helpful to people?"

So, what does seem to help? In very broad strokes:

• Being surrounded by people who care
  
• having meaningful social relationships
  
• being in a comfortable setting
  
• having an engaging curriculum (driven by novelty and joy, as opposed to "death by sight-words")

Another nugget from the day that I found very thought-provoking was reflection on "shepherds," i.e. how very much adult-presence and "proximal support" students with autism often have. How much of the hovering and correction -- y'know, those things we do because it's good for them, right? -- is necessary and how much not? Do we expect students with disabilities to be "on task" for more of the time than students without disabilities?

Well. The workshop was chock-full of anecdotes and suggestions and excellent ideas for providing appropriate support through environment and materials and relationship-building. It was actually so much as to be an overload, and if I try to reflect much of that back in bloggy format, I'll just be transferring that overload. It struck me as the kind of thing where, once you've got the right framework in your consciousness, there were almost enough ideas to be presented in a "strategy of the day" daily calendar format!

For me, what was truly important about the workshop was the framing -- the commonalities -- the sense that it's really all about being human and how we all react.

Here's a quote that didn't come from the presentation, but rather from a favorite album of mine when I was a kid, Free to Be You and Me:

Some kind of help is the kind of help
That helping's all about
And some kind of help is the kind of help
We all can do without!

For more information:
http://www.paulakluth.com/
including one particularly helpful page on being calm in crisis
The article is adapted from her book You're Going to Love This Kid: Teaching Students with Autism in Inclusive Classrooms.

Easing Into Kindergarten

Longtime Elvis Sightings readers will likely remember that we decided to have Joy wait an extra year before starting kindergarten. With her early-summer birthday, Joy won't be all that much older than others in her class, and we really wanted to see what additional communications gains we could make in the extra year.

Well, we've got a school-district team that really helps us put the "Individual" in "IEP." When we put together the plan last year, we decided to do a mid-year modification to get Joy into the school building for at least some portion of her itinerant therapy during the second semester, to build some familiarity so that kindergarten won't come as such a total fruit-basket-upset.

The time has come. As of this coming Tuesday, Joy will spend a couple of hours each Tuesday afternoon in kindergarten practice. At the school.



The schedule looks something like this:

• 1:00 Joy to arrive at Kindergarten doors (through playground)
  OT meets her for locker routine -- removes boots & coat, hangs coat and backpack in locker [she's got a LOCKER!]
  
  
• 1:10 Joy to walk hand in hand through hallway and stairs -- end up at OT/PT room
  
  
• 1:15 Sensory activities in OT/PT room
  
  
• 1:30 Concentrated fine-motor activity -- sitting at table for stacking, cutting, drawing, etc.
  
  
• 1:45 Transition to special educator -- in gym or continue table tasks in OT/PT room
  
  
• 2:15 Hand-in-hand walk in hallway to block area in Mr. M's kindergarten room for table tasks from bag of familiar tasks.
  
  
• 2:35 To locker to get on boots, coat, backpack.
  
  
• 2:45 Leave with JoyMama.

I'll have the option of either staying at the school and volunteering in Rose's classroom or the library, or heading home for a bit of get-stuff-done time. One neat opportunity that comes up quickly -- Rose gets to be person-of-the-week around her birthday the second week of February, and she's really excited that I'll be available to come celebrate and that I can bring Joy to meet Rose's classmates after her Tuesday activities!

Hard to believe that my baby is really going to school. This coming week. Wow.

Just for Today, She Signed the Word "More"

We've seen it a couple of times recently.

Today it was unmistakable at lunch. Joy wanted more Kix. (What, you don't feed your children delicious nutritious breakfast cereals at lunch? C'mon!!) And when her portion was done, she very deliberately gave herself her own little fist-bump, the sign for "more" that has come and gone over the months, and come and gone. Who knows if it will be here tomorrow. Or even this evening.

Just for today, she's chewing the bejammers out of her super-strength chewy-toy. This overwhelming need to chew came back two or so weeks ago, I think. She's also leaving it clipped onto her shirt today. The last phase of super-chewing, she would let Lynda clip the chewy onto her at daycare, but would pull it off in a second at home. Who knows if she'll need to chew tomorrow, or if she'll leave the clip on.

Just for today, she's been pushing some boundaries. Climbing onto the toy chest to get to the TV. Climbing onto the glider-rocker in the living room, which she never used to do. Most of the time she's responding well to a voice-prompt of "Joy, down!" But who knows if she'll climb tomorrow, or if the voice-prompt will work tomorrow.

This weird uncertainty, this not knowing when the switches and sliders on Joy's mixer board will flip and slide, is making it a challenge to write her IEP, her Individualized Education Plan for the upcoming school year. Her school-district team leader commented to me the other day, after having combed through months of daily reports, that there are lots of times where we report something new starting, but then she often doesn't find a mention of when it stopped.

Well, yeah. At one point back in September I blogged that Joy had retrieved the word "ma-ma-ma". A week later, I wrote,

And we never know, from day to day, whether this day will be the last day that she says ma-ma-ma for the next year. We can't take any gain for granted. And that's very, very hard.

Guess what. One day, probably not too long after that, was the last time I heard "ma-ma-ma". But I don't know what day it was, because when she said it for the last time, I didn't know it was the last time. I don't even remember when I realized, "Hey, where are the ma-ma-mas?!"

So we end up not having a good record of when things go away, either the things we want to go away (like the night-wakings, still with us, alas!), or the things we desperately wish wouldn't go away. Like "ma-ma-ma."

It's funny, but it almost feels as if IEPs are written with neurotypical children in mind, in that way. You write goals, with the general expectation that the child will make documentable progress toward those goals, so you can record when a goal has been met and set new, higher goals. It's not set up for our reality, which is more like, "Joy was doing this thing pretty well in the fall. Then she didn't do it for a long time. Now she does it sometimes but not always, and we don't know why she does it some times and not others, and it might disappear again, who knows."

So, what goal shall we write for whatever "thing" it was? Do we keep trying to teach it? Do we figure she knows it but doesn't show it? If she doesn't do it, how can we build on it?

IEPs are not built for living in the moment.

And today, just for today, maybe even just at lunch...

Joy signed the word "more."

Shameless Self-Congratulation

Way back in the Dark Ages high school I had an excellent, quirky Chemistry teacher. One of his tricks was suddenly bestowing a coveted award that could be earned at any time for clever thinking or a job well done. The award was a mimeographed certificate known as an "Attagirl" or "Attaboy." If you ever collected 5 of them (a rare occurrence indeed), you could trade them in for the über-certificate, "One Great Big Pat on the Back."

Well, despite pride being one of the seven deadly sins, I'm going to award myself an Attagirl, based on two bits of advice from past online conversations that I picked up and put into action on Joy's behalf. And I'll rationalize the shameless self-congratulation because, hey, I'm sharing the good ideas with all of you, and that has to count for something! Right?

Bit of advice #1 was something we did last year: take a photo of your child to the IEP meeting (the summit at which you put together the Individualized Education Program/Plan that shapes what school-district services your child will receive in the coming year.) Since Joy is too young to attend such meetings, and we were dealing with administrators who had never met her, I glommed onto that advice as a way to give her a physical presence at the proceedings. We were very pleased with the outcome of the meeting and how it shaped the summer and this school year so far, and that photo surely helped set that stage.

Bit of advice #2 was something that I ran across before either Rose or Joy had started with the school district. The advice was to become a "presence" at your child's school as early as possible, so that you are not a stranger to the powers-that-be when your kiddo with all her unique needs comes down the pike. Since Rose started school first, I've been able to volunteer on her behalf and also position myself as an already-valued part of the community as Joy moves toward kindergarten. This year I help kids in Rose's classroom with their reading, and volunteer in the school library as well. I also designed and maintain the PTA website, which brought me to the attention of the principal, and made me a known quantity to be able to raise concerns about last year's poor snow-removal on the city sidewalks across from the school (got it onto the PTA board agenda, people who knew people talked to people who get things done, and there's definitely been improvement!)

Now that 2008 has rolled over into 2009, it's time to think IEP again. Joy will turn 5 at the end of May, putting her at kindergarten age for next fall, but we're leaning pretty heavily toward waiting an extra year. Once she starts attending school, it becomes ridiculously difficult to arrange a full schedule for her intensive autism therapy, which cannot overlap with school hours. (Gah. Don't get me started... that'll be a rant for another post.) Since she's got an almost-summer birthday, she wouldn't be that much older than her classmates with early-fall birthdays anyway.

So, what's the process for delaying kindergarten for Joy? First, I needed to contact the administrator who presided over last April's IEP meeting -- who surely remembers us pretty clearly, in part because it's apparently so unusual to bring a framed photo to the meeting around here. The photo of Joy was a memorable one, riding on the zoo carousel and beaming ear to ear. Then that administrator sets up a meeting for us with the school principal -- you know, the guy who already knows me as a good person to work with because of the volunteering and PTA stuff...

Maybe it's premature to do the "shameless self-congratulation" dance, since the meeting hasn't even been scheduled yet! But, having put into practice those two bits of wisdom from other special-needs parents online, I'm feeling so much better about even the prospect of how this process is supposed to go.

Attagirl, JoyMama!

In unrelated news, I also got some bloggy appreciation from my sister-in-law ARatM (short for Auntie Running-at-the-Mouth). I drew her name this year in the family holiday gift exchange, and my gift to her was a hand-embroidered running hat emblazoned with "RatM". Not only did she wear it for a race on New Year's Day, she changed her profile pic to show off her new gear. Check it out!

A Single Goal

I should probably call this post "A Single Goal: or, More Cosmic Convergence."

Way back in August, Barbara wrote a post at TherExtras that criticized the hodgepodge that often results when too many experts are trying to accomplish too many things with a child:

What I don’t commonly see - or have not seen most of 30 years – are concentrated efforts to learn one skill at a time. I don’t hear or read families that do this. I’ve never seen an IEP that said “this school year Aloysius will be potty trained” or “Esperanza will learn to feed herself” – not at the preschool level, not at the kindergarten level, not at the elementary level.

How many high school students in special education do you estimate I’ve met who cannot do either toileting or feed themselves without assistance?

As I told Barbara at the time, Joy has a standard multi-faceted IEP, chock full of various goal areas for her therapists to address with her.

But even before the school year started, I had a conversation with Joy's school-district team leader. Unprompted, she told me that she had a thought for a single overarching goal for Joy this year, IEP complexity notwithstanding. That concept was: imitation.

Though it was a different angle than the single movement-oriented and task-oriented kind of goal that Barbara presented, there was power in that single simple-yet-not-so-simple idea of imitation. It has been a useful touchstone throughout the semester so far.

So then yesterday morning I once again had the chance to hang out with the incomparable Mama Mara. We got to talking about our respective blogs and I was musing on some of the posts I'd been meaning to do, and mentioned the single-goal thing. Her eyes lit up with cosmic-convergence connectedness, and she told me about her son's case manager at last week's parent teacher conference asking her the single-goal question: if you picked just one goal for your son this year, what would it be? I am terminally impressed that Mama Mara had an answer at the ready: that he would be able to get a handle on the "stuff" he needed to get through the day, keeping track of coat and backpack and such.

And thus do good ideas meet, shake hands, and ripple back out into the blogosphere...