Pre-IEP

Tonight's blogging is pre-empted by IEP preparation.

8:00 am meeting tomorrow.  Is that even morning time?

Gah.

IEP tips for parents:

1. Bring your child when practical. Our girls are very good at these meetings and Ellie's presence helps keep the team focused on the child rather than the diagnosis or scores.  (Before Ellie was old enough to attend I brought pictures.)
2. Bring food for the whole team.  It's not a bribe, but it sets a nice mood.
3. Come prepared with thoughts and questions about things like how the child did against her current goals, what sorts of goals are practical for the next year, and what are typical grade level expectations for the same time frame (if applicable).
4. Don't be reluctant to share any concern you have.  Often you're not the first to have a particular question, complaint, or worry.
5. Relax. It can be fun! These meetings are rarely adversarial . . . or at least they don't need to be . . . 
6. But at the same time be firm when you need to be. You are your child's advocate and while you're not at school with your child all day (probably) you do know your child best.

Just my two cents.  I've been to about 8 of these school district IEP Meetings for Ellie, but I'm hardly an expert yet.  I've got about 12 more years to practice!

IEP for people who have no idea what I mean: Individualized Education Plan.

IEP Elation

Ellie's IEP meeting was this morning, and it was wonderful. Really!

First, all the stars aligned. Even though my mother lives in Chicagoland and my sister got married over the weekend in Kentucky, my mom took a train down to St. Louis last night so that she could be here to support me this morning (she's already back home and planning to go to work tomorrow). Ellie's Regional Center case coordinator, her developmental therapist, and the director of her current school also attended to look out for Ellie's best interests.

I was prepared, showered, nicely and comfortably dressed, fed, and on time. Just early enough to be well settled and not bored before we started, actually. With a fresh bottle of cold water.

We discussed the evaluation results, only touching on the cognition score for the briefest of moments. And before I could say anything about it, the special ed teacher who was leading the meeting (and with whom I've had several phone conversations, and who's met and observed Ellie at school) added that the parents (that's us!) felt that this was a "very minimal assessment of Ellie's abilities in this area," and we moved right along.

We spent most of our time discussing Ellie's strengths, specific needs, and goals to meet those needs. Her new PT couldn't make the meeting, but she sent detailed notes and called us last night to go over them on the phone and make sure we agreed with her assessments (again). We loved her new OT. Her new Speech Path seems like she'll be excellent. The teacher seemed nice.

The preparatory literature we were given told us that our most important role in the IEP meeting was to remind the team that they were talking about a real person, our beloved little girl. This hardly seemed necessary - the meeting was perfectly cordial, considerate, and comfortable - but I passed around an adorable picture of Ellie at the beginning during the introductions part.


Ellie will be at a very convenient location, four mornings a week, with lots and lots of therapy, but all of it "push in" where the therapists work in "circle time" and "centers" where all classroom children are included in the therapy activities and she will not be singled out unless it becomes necessary.

She will be in a small class, more than half of the students without IEPs, currently only one other student with an IEP (though the balance is likely to end up closer to 50/50 by the end of the year). There are two other little girls starting around the same time, also just turning 3.

In short, it's perfect, it's perfect, it's perfect. And it's done. And Ellie is getting some phenomenal services in an environment with which we're very comfortable. The evaluation process was horrible, and I have been given an evaluation form that I intend to make the most of, but in the end I think it will be well worth it. Especially since at this age Ellie was spared the pain and will reap the benefits.

A Culture of Life?

I knew that I was expecting a baby with Down syndrome, and the news got around. Pretty soon, I started getting recommendations. A coworker I barely knew has a son with the same diagnoses Ellie has, and she stopped by my office with a lot of great information (and support) including the name of her son's fabulous pediatrician and his inclusive daycare, complete with great therapists. The special OB who performed my prenatal testing set me up with a terrific pediatric cardiologist who did a couple of fetal echocardiograms. Fetal. Like, before Ellie was even born. And then I had 20 weeks to grieve for what I imagined I'd lost, and to prepare for my daughter's birth.

When Ellie was born, I was so far ahead of where most women are after giving birth to a baby with trisomy 21.

And I loved my baby. I loved her so much, I hardly ever put her down. We had no problems nursing; we had immediate, intense attachment. Also, my mom had given me a book of therapy exercises to do with young children with Down syndrome, which I did daily almost from the time we got home from the hospital.

But I was still paralyzed by fear and discomfort and desire not to have to negotiate this new world into which I was thrust. I could handle the medical stuff. But First Steps and therapies? Nonononononono.

Many pediatricians deal mostly with typically developing children, but Ellie's amazing, wonderful, terrific, unbelievable pediatrician was so helpful. She made the first call for me. She followed up. She told me what to expect, what to ask for, what Ellie needed. I got it all.

And then, the system changed. After our new "Pro-Life" governor was convinced that he really didn't want to eliminate the First Steps program after all (start at the bottom) he still decided to cut it way back.

He instituted fees for some of the services, and a whole new model for determining what services are provided to our state's most vulnerable children.

When Ellie was 4 months old, she had an OT and a PT. By the time she was 12 months old, she'd added a developmental therapist and a speech path. A woman I know had a baby with Down syndrome two years after Ellie was born, and by the time her baby was 9 months old, she was receiving zero services. Nothing. Nada.

Because now, instead of working with the parent to determine the baby's needs based on diagnosis, pediatrician's recommendation, evaluation, or even a simple questionnaire, it's all based on one question: what are your concerns?

When the stunned new parent of a baby with any sort of special need finally works up the nerve to call the organization that's supposed to help her child, she's presented with this:

How are things going; do you have any current concerns?

It's a newborn baby! With an unexpected diagnosis! What is the parent supposed to say to this?! She's not walking properly yet, being a newborn and all. Perhaps she should have physical therapy?

As the parent, I am the expert on my baby. I'm the expert on her day-to-day needs, and on loving her. BUT, I'm not an expert on all babies. I'm not an expert on PT, OT, development, medicine, or speech. I need to be able to rely on a team of experts who will tell me what my baby needs.

But we withhold this information, tying the hands of the providers lest they offer more services than the parent knows to ask for, costing the state money (in the short term). Yet we want women to choose not to have abortions?

No Child Left Behind has made sure that public education continues this ugly trend.

The goals on a student's IEP (individualized educational plan) drive what therapies she receives and what her therapists address with her. But the goals are derived directly from the "Family Concerns" section of the IEP. We messed up last year and didn't write down enough parent concerns and are currently having to supplement Ellie's therapies in all areas.

Tomorrow is Ellie's IEP meeting for next year, and I've been preparing for weeks. I've taken a training class and I have a better idea of what to ask for, and how.

But it shouldn't be this hard for parents. The experts should be able to help us determine what Ellie needs, and what it's realistic to ask of her.

Because, you know what? I'm more equipped to deal with this situation than a lot of other parents. What does it mean for their children? And what does it mean for our society when these children leave school and are expected to become productive adults?

Not Today, Thanks

With all of the hustle and bustle of December and Advent, there's one big stressor I'm not experiencing this week, and that's testing.

Ellie's last evaluation was in August of 2006, shortly before her third birthday. It was good for 3 years, so she'd need another before starting Kindergarten. It makes sense to do it now, her teacher explained. That way we'd have all the most current information on hand when we start the IEP process early next year and talk about Ellie's needs and goals for Kindergarten.

Sure, that sounds reasonable. BUT, I know that the pre-Kindergarten evaluation is the one where a Real Diagnosis is assigned (until now she's been a "young child with a developmental delay") and I've been dreading this moment since before Ellie was even born. Most of us live up to expectations. Labels can be very helpful in accessing necessary services to promote development. They can also affect others' expectations and therefore limit potential. I see this all the time, in myself as well as in the people who work with Ellie.

Also, our last evaluation experience was awful. And the IQ score the evaluator came up with for Ellie was . . . ridiculous and not at all a measure of her current abilities, let alone her potential. I can't bear the thought of her future Kindergarten teacher seeing something like that in the file as her first introduction to my wonderful, amazing, smart, capable daughter.

I've been to some pre-kindergarten parent workshops about how to introduce your child to her new teacher in the best possible way. And Ellie and I still go to her monthly "practice reading class," which is a special pilot early education program for kids with Down syndrome, sponsored by the Down Syndrome Association of Greater St. Louis. It's a fabulous academic program, but its greatest benefit from Ellie's perspective is getting to spend the afternoon with a bunch of other kids with Down syndrome. And the greatest benefit from my perspective is what I learn from the other moms and their experiences.

Last month I learned that I can refuse the IQ test without losing services. So I did, in a gently and nonconfrontational way. And Ellie's teacher was totally OK with it. And we're going ahead with the IEP and all that early next year with no expectation of problems or loss of services. And no new labels!

I didn't even have to use the suggested wording: "As many scholars argue, I.Q. tests measure only the output from the student at a particular moment in time and are not necessarily predictors of future ability (particularly when dealing with children with disabilities). Additionally, studies from England are beginning to show that standard I.Q. testing may not accurately predict the abilities of children with Down syndrome. Based on these points, we feel the I.Q. testing recommended in the proposed assessment is not appropriate and therefore, oppose it."

I just pointed out what my mom said to me, that Ellie's last test was unequivocally inaccurate (everyone agrees on this) and that IQ tests are notoriously unreliable at this age.

And it worked!

Alleluia!

No Child Left Behind - Except Mine (draft 1)

President Bush is pleased as punch about his "No Child Left Behind" education act. Senator Kerry says that he supports the NCLBA - with a few modifications. Nothing on his website suggests that students with disabilities fall into his category for needed modifications. This was originally to be an open letter to both Kerry and Bush letting them know my most pressing concern about NCLB, but it seems that I'm not yet calm enough to write a cogent letter.

Under No Child Left Behind, a certain percentage of all students (regardless of sex, race, ethnicity, socio-economic status, or disability must pass standardized tests in order for the school to keep its federal funding. Well, duh. Obviously this pressures schools to divest themselves of students who aren't performing up to grade level.

Each student with a diagnosed disability has a federally required Individual Education Plan (IEP) with realistic goals for that child given her or his special needs. Two federal mandates are clashing here.

Regardless of a child's special needs, regardless of what the IEP specifies as appropriate target educational goals for each student, all students are tested equally under No Child Left Behind. And if kids with special needs aren't passing, then the school is assessed serious penalties.

Hello?!! Why aren't people talking about this? Why aren't people enraged? We don't like to think about disabled kids. Well, wake up, people! This could be your child. We're not just talking about poor black babies from elsewhere who were born addicted to crack. We're also talking about very intelligent white kids from the suburbs who have dyslexia or some other learning disability and require extended time for standardized tests. And we're talking about kids with Down syndrome, like my Ellie. This is not something that we can ignore. This is something we have to address - now - before more children get left behind.

The students who need the most help are the ones being pushed toward the door, and that is simply not right.

Evaluate This

I'm not going to mince words. Today sucked ass.

Fortunately, I've moved beyond tears into anger, which is a far superior place to be.

Yesterday was Ellie's Individualized Family Service Plan (IFSP) 6-month review. Twice a year, the program director at Ellie's school, each of Ellie's therapists, her state early intervention service coordinator, Paul, and I all get together. We go over Ellie's progress over the past 6 months toward achieving the goals we set last time, then we set new goals for the next 6 months.

Yesterday's meeting was our last IFSP, because Ellie is in the process of transferring out of the early childhood program and into the school district. From her third birthday on, Ellie will receive preschool and therapy services through her school district rather than through the First Steps program. This transition involves a lot of meetings, a lot of paperwork, and a LOT of evaluations.

I expected it to be painful.

I didn't expect it to be this bad.

Yesterday's meeting went very well. Ellie has made incredible progress in all areas (speech and language, gross and fine motor, adaptive/self-help skills, and cognition) recently, and it was, frankly, fun going over her progress with her team. We have a good team. Things are going well. Time to upset the apple cart.

We were at the Special School District preschool evaluations office for 4 hours today, and Ellie did fantastic. She was in a good mood and she was compliant, but she also showed all sides of her typical personality so that the evaluators could see this is what she's like when she's frustrated, etc. She was amazing and the evaluations process seemed to go very well, though Paul and I couldn't watch most of it. We were in the room next door being interviewed, one at a time, by each of the 5 members of the evaluation team. That wasn't totally fun.

The team went aside to talk for a bit, then came in to go over their report with us. (We'll be receiving a copy in the mail in a couple of weeks). In reverse order, we heard from the speech pathologist, the PT, the OT, and the school psychologist. The evaluations of Ellie's speech/language and motor skills were perfectly aligned with what we're seeing at home and what Ellie's current therapists are seeing. The delays found were unsurprising, and we were pleased that she qualifies for speech, OT, and PT through the school district. We were also pleased with how positive the evaluators were about how Ellie's doing, how far she's come recently, and how she's likely to progress in the months to come.

But first we heard from the school psych about Ellie's social, behavioral, adaptive, and cognition scores.

It's worth noting, at this point, that Ellie's current preschool teachers tell us how well she keeps up in the classroom, mostly full of typical kids (there's one other little girl with Down syndrome). Her Developmental Therapist, who sees Ellie at home and at school and is a former special ed teacher and school diagnostician, tells us that the only thing that keeps Ellie from participating fully in class is her occasional stubborn/defiant behavior. We haven't had any real "cognitive" goals recently because she met the big one: plays appropriately for her age and with other children in the classroom.

So this school psych evaluator woman tells us that Ellie has moderate delays in adaptive behaviors/motor. Yeah, we know that she's nearly 3 and isn't fully potty trained yet; can't dress herself, and still sticks out her tongue when she drinks from a straw, etc. No surprise.

Social Interaction and Communication: high score.

No behavioral delay.

As far as cognition, here's what she can do (all according to the school psych):

• match colors
  
• label pictures
  
• age-appropriate puzzles - though a little slow
  
• put pegs into a pegboard
  
• understands pronouns
  
• discriminating between objects
  
• interest in listening to a story, pointing out pictures that go with the text, making animal sounds, etc.

Now for the verdict. Ready?

Severe Delay in Cognition.

WHAT THE FUCK?

I'm a bit flummoxed, of course, so I incoherently press for more details. Well, she can stack 5 tiny blocks. She should be able to stack 6-8 of them.

Um, OK. That's more fine motor than anything else. And a one block deficit is so totally not SEVERE. WTF?!!!

She gave Ellie a developmental age of 21 months, which is also totally hogwash. I know 21 month olds. I see how they play. They are more into pushing a car and throwing a ball then they're into ordering, phase 2 in imaginative play. For example, Ellie loves to give her doll something to drink, then undress her and put her on the potty, clap for her, wipe her, then put on a diaper. This, for the curious, is very age-appropriate play for a 34 month old.

I know there are delays. I am not hiding my head in the sand here.

Still. I also know that there are lots and lots and lots of kids who are much much worse off than Ellie. And I know that "severe" doesn't come close to describing this kid who can play Hi Ho! Cherry-O and talk to the baby she can't see but knows is growing in mommy's tummy.

So. I don't note a severe delay in Ellie's cognition. Ellie's current developmental therapist doesn't note such a delay, nor do her classroom teachers, nor her grandmother, who's also an elementary school psychologist who does this evaluation stuff for a living. Ellie's pediatrician, who specializes in kids with Down syndrome and has one of her own, is convinced that Ellie does not have severe (or even moderate) cognitive delays.

This is how I've moved from the tears to the anger. The eval was wrong. Flat wrong. Worse, the scale was off (Mom explained the scales to me, and I suspect this particular interpretation has a lot more to do with the Special School District drumming up business for itself by qualifying kids for more services). And the instrument was faulty.

My mom's school district only uses this particular test with kids who are totally non-verbal and there's no other way to test them. (Note: the ceiling on Ellie's single-word vocabulary was 3 years and 11 months; not quite "non-verbal" but rather a whole year older than she is.) My youngest sister was evaluated with this tool when she was 6 months old.

So I'm even working through my fury.

But I'm still a bit sad and mad and depressed that it looks like I'm going to go into Ellie's experience with the school district having to fight for my daughter, when I was hoping against hope that we could all just get along.

And at the Individualized Education Plan (IEP) meeting in a few weeks, if they come back with ugly words like "severe cognitive delay" and want a ridiculous amount of apart-from-typical-kids time for Ellie, I'll be ready to go to bat, threatening a lawyer and demanding that she have a new eval by a new evaluator, and refusing to sign the IEP until it accurately reflects the needs of the daughter I know and love so well.

Mild Rants and Request

I have a crick in my neck from typing on my laptop while looking at the desktop PC's (actually, kitchentabletop, if you want to get specific) monitor. Because my laptop's backlight died this morning, which was a lovely way to start the day. Sentence fragments suggest frustration, dontcha know.

Fortunately, we purchased the extended warranty and someone from Dell is supposed to contact me tomorrow about coming out to replace it. Paul doesn't seem to think that this is a big deal, but swapping out the monitor on a laptop seems a bit more involved to me than doing the same with a PC. So I backed up my entire "Writing" folder, just in case.

For the interested, On Point had an interesting program on closed vs. open box systems and the future of innovation/the internet.

Moving away from technology to vent about something else briefly, let's talk about summer programming. I won't even get into the way most activities for kids assume an at-home parent to ferry kids around at extremely variable and inconvenient pick-up and drop-off times. That's not my rant, because I am an at-home mom and available to make those trips. (Though I still acknowledge how incredibly unfair the system is.) But figuring out a schedule for what my girls should do this summer was harder than creating a workable semester schedule for an English major/pre-med back in my college years. (There's very little overlap and lots of conflict, there.)

But I figured it out. June's will be the busy month; July and August will provide a bit more AM down-time (all afternoons are pretty relaxed). In June Ellie has summer school two mornings a week. Two other mornings, she'd be in a morning-only day camp at a local park. Those 4 mornings, Ada and I would go to swimming lessons together while Ellie was otherwise occupied. And the 5th morning, we'd do something fun altogether, usually swimming.

But I got distracted by the IEP and then vacation, and . . . camp was booked solid when I tried to enroll Ellie. It was the only camp I've found that had a two days/week option, so that it fit around her summer school schedule. But the closest pools to us have 4 days/week swimming lessons (a practice I like for the learning water comfort/safety process, though it makes scheduling tough) so I can't take Ada for swimming lessons unless Ellie has some sort of programming on those mornings. I don't think Ellie'd be really cool with being dropped off in the gym daycare while Ada and I swim. ARGH.

I know, I know, this is an insignificant problem, in the grand scheme of things. But I can't take swimming lessons with both girls at the same time (trust me on this) and I want both to have that opportunity. Scheduling summer programming feels like a big puzzle that I'm having trouble solving. Does anybody have the box, so that I can see the picture I'm trying to match? Seriously, if you have suggestions, I'd love to hear them.

Finally, thinking of bloggy helpfulness and to end on a positive note, I want to give a big THANKS to Carolyn for the Mystic Chai tip. I got three canisters for Mother's Day and I plan to put them all away before my September birthday. It's just as good as I remembered, even when I'm stirring it myself!

Ellie's Kindergarten IEP

On Thursday we had Ellie's transition-to-Kindergarten Individualized Education Plan meeting. I was up until 3:00 the night before, but I was ready. I'd talked to my mom, a school psychologist (and former diagnostician and learning disabilities resource room teacher) who attends IEPs regularly. I'd talked to Ellie. I'd met recently with her whole team to discuss Ellie's progress and Present Level.

I reviewed my notes from the how-to meeting on IEPs I attended last year. I went over Ellie's previous IEPs. I updated the sheets Paul and I put together describing our Family Concerns. And I created a sheet listing some fun facts about Ellie (she loves playing with beads!) and lots of cute pictures, so that she'd be a real person to the people in the meeting, the people deciding her kindergarten placement and services, not just a diagnosis and score.

Speaking of scores, I also refused IQ testing for Ellie this year after our LAST horrible experience. When this came up in our meeting, one particular team member - who shall remain anonymous as we have to work with ... her - got this really pinched look about her mouth, but they all accepted our decision. So at least Ellie was more than just a "score" to them. Especially because she was present.

And she did great, for an hour an a half of really boring meeting talk. She sat with us for a while, played with her beads on the floor for a bit, came back to the table for a snack, read some books quietly in the corner, went to the potty with me, then was ready to go. Fortunately, it was time to pick up Ada from school by this time so Paul and Ellie left while I stayed to finish up with the team.

Overall, the meeting went very well (though there were a couple of tense moments with the pinch-faced ... administrator, who seemed kind of mean but was very helpful and knew what she was doing). Present were Ellie's current teacher, speech therapist, and physical therapist. Her OT couldn't make it but sent detailed notes and talked both to me and to the Elementary School OT in advance. Paul, Ellie, and I were there. And, from the Elementary School/school district, two service coordinators (one for early childhood, one for elementary), the principal, the OT, PT, and speech therapists, the resource room teacher, and the classroom teacher attended. It was a packed room!

The verdict: Ellie will be fully included in full-day Kindergarten this fall. She will progress throughout the day with her class, with occasional push-in and pull-out therapies. She will spend at least 80% of her day fully included in the classroom. (During math time she'll be pulled out for help, and during "play centers" time she'll also have a pull-out session. She'll be receiving PT, OT, Speech Therapy, and Special Education.)

She will not have a paraprofessional assigned to her, with two exceptions. There will be someone to assist Ellie at potty time, until she's shown that she can handle the whole process completely independently. And there will be an extra set of eyes on her on the playground, since it's bordered by lovely woodland areas but not fenced. She'll ride the special needs bus, because I still want her in the safety harness. (I love the short bus.)

I'm a little giddy, from happiness, excitement, and worry. I loved school so much, and I want Ellie to love it, too. I want her to have enough support to allow her to learn all she can without getting overly frustrated and giving up, but I don't want her to become too dependent on a paraprofessional or allow a full-time hands-on aide to add to a sense of distance and isolation between Ellie and her peers.

Curbside drop-off. Independent transitions between activities. True academics. PE, art, music (two of these per day). Lunch in the cafeteria. Recess. School!

I Never Call, I Never Write

So, decent blogging has been sparse around here, lately. And my "drafts" folder is filling up with the clutter of posts I start but lack time to develop and finish. The time problem isn't just due to the busyness of the holiday season - by which I mean the holiday season, Thanksgiving to Advent, Christmas, and New Year's, and that's just what we celebrate/observe in our house from late November through the end of the year.

The problem isn't just due to parenting two young children, each of whom has her own "special needs." (Ada with her fabulous two-year-old's desire for attention and lap time, Ellie with her academics and monthly "team meetings" at school.)

The problem isn't just due to my writing and the time it takes away from my family. (That bit of guilt courtesy of my mother.)

The problem is also due to the fact that I've been doing a lot of freelance work for pay lately. I appreciate the work. I don't mind doing it (mostly). And I really enjoy earning money. But this one last thing on top of the pile makes the whole thing wobbly and threatening to fall over. It's an important thing, so I've jettisoned other things to make room for it (Christmas cards, big Christmas open house, exercise).

This is just an adjustment period. And until I get the balance settled again, well, boring and irregular blogging. Alas.

When I write again, some things I want to talk about include Ellie's latest round of assessments and her IEP, a "cure" for Down syndrome, managing finances, what I'm reading and why, what I'm writing and why, and my opinions on the SO YOU THINK YOU CAN DANCE finale. No, wait. I don't want to blog about that; I just want to watch the finale! Nighty night.

Nothing to See Here

Tonight was a night of company, poorly sleeping children, and a lot to accomplish, so there's no new content. However, I did tinker with my template a bit more, realizing that I never reinstalled my statcounters after my template upgrade, so I haven't been tracking visitor stats for more than a week. Alas. That's fixed now, and I've reinstalled the link to the PCUSA webring.

Thinking of the PCUSA Bloggers site, it's changed a lot since I first joined. Does anyone know if there was an official switch of leadership, or just one prolific poster currently active?

The giant coffee table is finally gone from our family room. It took a long time for me to clean that out.

And now I'm off to continue preparing for Ellie's IEP meeting. I'm going to need to mainline caffeine to get through to Saturday.

Key Word Search

The highest numbers of visitors who come to Yeah, But Houdini Didn't Have These Hips via keyword searches look for "athletic sex" and "baby finger sucking." The two are tied.

I'm sorry for sharing that. And sorry to all the visitors who come here only to be disappointed.

Most of the other keyword searches make sense, like, "houdini hips," "kindergarten iep," or "sarahlynn."

This post is a placeholder for the one I intended to write tonight about my improperly fitting bras. See, I shared some "slice of life stories" at church on Sunday for a group of about 35 Presbyterians, few of whom were younger than my parents. And as part of it I mentioned my blog.

Hello, fellow Presbyterians! You found me! But at least you didn't have to read about my undergarments. If only Lynn or Mary Kay blogged. Then you could be reading about NATO airmen or highland cattle rustlers. Alas! You got me, instead. And my bras.

Full-Day Kindergarten

This morning, I was interviewed on camera by the preschool director for our school district.

"What do you look forward to with your child to experience in kindergarten?"

"I hope that in kindergarten, learning to read, she really starts to develop an independent love of learning, and the realization that she can teach herself new things. I also hope that she'll develop her sense of independence."

"What concerns do you have about your child entering kindergarten?"

"My husband and I loved school so much and we want that for our daughter, too. I'm just so afraid that she'll find kindergarten too hard and will want to give up. I'm afraid that she won't like it, that it will be too different from play-based preschool. And I'm a little scared of all the independence she'll have and the room for making bigger mistakes."

Then we went next door to Ellie's classroom and the teacher attempted to interview Ellie. We'd practiced at home, of course, but she was absolutely not really into it. And who could blame her? Sure, we blather on about "kindergarten" from time to time. But what does this strange word mean? It sounds like our beloved "Musikgarten." Come to think of it, what is "next year," anyway? And new schools are nothing big to her; she's been in five classrooms in three preschools already.

"I wonder what you will do in kindergarten?"

Ellie did this little mutter thing she does where she doesn't make eye contact and doesn't use actual words but mumbles along like Charlie Brown's teacher. This is not unlike what I do when I don't know the words but want to keep singing. Or when I feel like I should know the answer the rest of the group is reciting.

"Ellie, what do you think you will do in kindergarten?"

"New friends," she said very quietly, smiling at her sister playing on the trampoline directly behind her . . . and turning completely away from the camera.

"What do you think you will learn in kindergarten?"

I can tell you what she did not say. She did not talk about computers or reading, as her father and I had suggested to her during our earlier practice sessions.

"I wonder what you will like the most about going to kindergarten?"

Ellie did not mention eating lunch at school or riding the bus. In fact, it was pretty obvious that she was not into this scene and was so done. She headed off to play.

I shrugged at the preschool director and cameraman. It happens. And there were lots of other children to interview.

Back at home, over lunch, I flipped through the day's mail.

"Dear Parent,
We received a number of applications for our Full-Day Kindergarten Program and twenty children for one class were selected through a random drawing. Although your child's name was not drawn . . . "

Ack! Not even in kindergarten and already a rejection letter, if not a personal one. We applied for the limited full-day program because we know that Ellie will be pulled out of the classroom some for therapy serives and we worry about her missing too much class. But all that will be addressed after her transition I.E.P meeting and we're not too worried about the schedule yet.

A couple of hours later, after naptime (we're sort of back on naptime) I was chatting with Ellie about kindergarten again. She still wasn't very into it. The phone rang.

Ellie's principal is an interesting dude. We know him from her stint in the early childhood room at the local elementary school, and he's very nice, easily approachable, and extremely accessible to the children. He's young and handsome: tan with white teeth and curly blond hair. He also has the highest voice I've ever heard from an adult man. It's much, much higher than mine. I don't type in pitch, so you'll have to use your imagination here.

"I'm calling with good news!" he said. "So many families were interested in full-day kindergarten for next year that both classrooms will be full-day! Eleanor will be in Mrs. X's class or Mrs. Y's class, and . . . "

It's starting to feel almost real.

Next year, I will have a child in elementary school. She'll be doing things like going into the building on her own. And losing baby teeth.

I'm sure I'll be doing things like turning grey and biting off my fingernails.

Honesty, then a little more anger

Another thought on the whole evaluation process.

There are main two reasons why this label thing bugs me so much, a "good" reason and a "bad" reason.

The "bad" reason is because intelligence is important to me and I attach more importance than I should to "measures" like IQ and labels like "smart." I've always known this about myself; it's something I struggle with daily and have for the past 3+ years.

The "good" reason became clear to me earlier this evening when I was talking to my youngest sister, the social worker/family therapist. Although she has to use similar tests and labels all the time at work, she hates them and makes a point to devalue the results to the kids and families she works with, for obvious reasons.

She pointed out to me how dangerous these labels can be, for people who take them too seriously. Part of the reason that Ellie is doing so well is because we expect so much from her. And if we (as a society) start dramatically lowering parents' expectations of their kids, that can have a profoundly negative effect on what the kids achieve.

That's not an issue with us and Ellie, but I am concerned that it will be an issue for Ellie with her new teachers and therapists. Imagine that you're a teacher and you're getting a new student diagnosed with a developmental delay.

Imagine how you might treat this child, if you're told, "This student should be able to keep up in your class. Please let us know if any difficulties arise."

Versus:

"This student is severely cognitively delayed. She will have an aide in here with her full-time to help her keep up, and she will be pulled out of class for an hour each day for special instruction and therapies."

Sure, the teacher might know that the tests are skewed at this age, but her expectations can't help but be different depending on what she's told about the student. We all know about the importance of first impressions.

I've heard far too many stories of kids with special needs not being held to the same behavioral standards as their peers (when appropriate, of course) and consequently not achieving everything that they're capable of achieving.

This is why I will reject any such labels being in the IEP report, and will insist that Ellie's given more appropriate labels or none at all, if the services she's offered seem inappropriate. I don't want the system to hurt her development; I want it to help her!

So far, most of the people involved with the evaluation process seem to be of the mindset that "the more therapies she qualifies for, the better!" I disagree. More is not always better; sometimes more is just more. Like the extra square of pizza I ate after dinner tonight.

8 Days

I don't think this will be too difficult in a few years. Sure, a lot of it will stay the same. Ellie is already sure of what she wants and when, so that part is not likely to change much. We already have a busy schedule and drive hither and yon all day. There are other things to worry about with older children, of course, but I'll be worrying about them regardless of whether or not Paul's home.

And let's be honest. Dealing with issues like Transition to the School District and IEP and Service Coordination isn't exactly relaxing.

But in a few years, my child will be able to dress herself, to get herself a drink and a snack, to not need me to get up with her every time she needs to potty . . . and sit with her reading books and singing songs for however long that takes.

I love the alone time together. I love doing stuff and talking and sharing experiences. But the increasing self-sufficiency is awesome.

On a related note, in response to everyone who said, "Be careful what you wish for" with the walking, well, Ellie's been walking all over the place for months now. And it's better than I dared hope. I have never, ever, not even once wished to have her weak-legged again.

Not when she's walking off the mark at the photographer's over and over again, not when she plops down in goose poop in the school parking lot, and certainly not when she runs down the driveway, stopping right at the edge of the street, then leans out a little further and shouts, "No!"

Other amusing Ellie anecdotes.

On our way to this morning's playdate, Ellie's one toy to take with us in the car was Backpack. On our way to tonight's dinner out with friends, her one toy was a paper grocery bag from Whole Foods.

Ellie is so empathetic. She doesn't like to be left alone at the table to eat (which occasionally happens, like when I'm still cooking the side dishes or pouring drinks). She assumes that Lizzi must feel the same way, so she likes to sit on the floor right beside Lizzi while Lizzi's eating her dinner. Sometimes she reaches out to touch her gently. Fortunately, Lizzi doesn't mind this from Ellie. Priceless.

I wish I'd taken a picture of that, and one of Ellie looking melancholily and contemplatively out the car window while listening to Simon & Garfunkel this evening. I would have given anything to know what she was thinking.

Hey! Paul will be home soon!