Saturday, May 10, 2008

Leak in Composure

Addie's IEP (Individual Education Plan - annual documentation of current functional and academic performance, specific and measurable goals and supports, services and accommodations needed to execute the goals) was yesterday morning. This was a biggie as it is her transition to kindergarten one - new school, new teachers/therapists, new rules, new expectations. Loading it up a titch more, she's also learning to use a speech generation device for communication. It's a little chunk of technology where when Addie touches the desired picture symbol, the machine says the word or phrase for her. It sounds simple, but it's a complicated assessment that includes her motivation, ability to identify the pictures, communicate intentionally, navigate the screens, use the right aim and pressure to hit the correct "button"... etc. Then there is the programming question - deciding what vocabulary and phrases Addie might use to express not just wants and needs, but her observations and feelings. This ongoing investigation has consumed me since February.

So there has been a fair amount of planning and discussion prior to the IEP meeting. We are parents who prefer to see a draft of the Present Level of Performance and goals at least a week before the meeting. We ask for this, making it clear that our intention is to start the dialogue before we're at the table together. I like to anticipate the meeting itself as an hour and a half of nodding that we're on the same page, so it takes some pre-work to get close to this very optimistic daydream. With input from me, the teachers do the draft, I read it and comment, send it back, then I have a meeting with some of the team to refine things before the bigger meeting. It was a bit different this year as it was Addie's current school doing the draft and her new school needing to respond and give input at the meeting, so I knew there would be more hashing out to do. Fair enough.

When we all got to the table - about 12 people - it was mostly productive conversation, confirmation of understandings. Phrases like "let me see if I understand what you're saying... we see things differently here, so my thoughts are... have you considered....thanks for making that clearer..." could be picked out among the debate. Even with this respectful, goal-focused discussion, it is difficult for me not to discuss the "how" when talking about Addie's goals for 2 reasons: the how is the part that requires the most detail and will determine whether a goal is attainable or not, in my mind. This is a stain left on my thinking from years as a marketing analyst/application usability designer. Further, if I do not understand the methods, I cannot uphold and supplement them at home. This is the hallmark of my relationship to teachers and therapists - let's figure it out and execute in a way that makes both of our jobs more efficient - neither of us can do it without each other. So I put concerted effort into making a general statement about how I intend to do what I can to prepare for the school year over the summer, but that the teachers at the new school would need to provide me with ideas since the school and it's routines and standards are new to me, as well. I held in the "How are you gonna accomplish that??" on each goal discussed. I recognized my restraint and a trickle of pride in it kept me smiling and genuine.

There were certainly opposing perspectives in the room, differences that required give and take. It was a comfortable conversation - in my mind, a nice vignette of grown ups talking to grown ups about ensuring the best for this child as she becomes a big girl. Our belief that Addie can and will contribute to the junior kindergarten classroom and school at large communities was considered a primary ingredient in each goal.

Then. In an exchange between 2 of Addie's current therapists that lasted less than 10 words, the brakes screeched and halted this good will momentum. The question had been asked about whether the kids sit on chairs or on a rug for circle time in the classroom. On the rug. I was suggesting that maybe Addie needs to have an assigned spot with her picture on it, so that consistency facilitates her following this routine until she can own it herself. The physical therapist added a side comment to the speech therapist that it might be best if Addie sat... in a Bumbo. Do you know what that is? It's a seat designed for 3-6 month old babies before they can sit up. It has a sort of pummel between the legs to keep the baby from sliding out. I have heard that the company is coming out with a larger one that might suit the needs of bigger kids with sitting or trunk control issues, but I'm not sure they were aware of this. And Addie does not have any physical issues with sitting.

My eyes glazed over. I heard the speech therapist start to say "yeah..." and my head turned inside out. I very curtly interrupted and said "Bumbo. No. My kindergartner will not be sitting in a baby seat among her 4 and 5 year old peers. That will not happen." The half smile, measured cadence and acidic tone flavored these short phrases, wringing out all that diplomacy built up in the conversation until that point.

To draw more focus to my mini-outburst, there was nothing but silence afterward. I would not even be thinking of it now, had that gap been filled with even just one comment like "Oh, no. It would not be appropriate for Addie to sit in an infant chair at school." Nothing filled the gap.

I took a breath and slightly more calmly explained that we believe Addie is capable of staying in her seat over time with practice and support and I weakly offered some examples of support that few at the table seemed to be taking in.

Clearly I am still bothered by this. No one disagreed with the baby seat idea. What would the point of using this chair be beyond mild restraint? Yes, Addie does tend to try to leave situations often. But most of that has to do with the fact that she has no other way to express her disinterest or dislike in it. 4/5 year olds can roll their eyes at calendar time, tell the teacher they don't like it, whisper to a friend. Addie can give release to her opposition in no other way than attempting to leave at this point in time. But everyone in that room agreed that she is capable of learning rules and routines. A kindergarten rule is that you sit on the carpet certain times of the day. A baby chair with a pummel is the same as having someone hold her down by the shoulders - it takes away Addie's accountability to learn the rule. It tells her "we don't think you can figure this out on your own, so we will make you sit here."

Kindergarten is about social development and beginning to take responsibility for the official and unofficial rules of being a member of a community. Addie does not speak, has physical and cognitive differences. It's hard work for all junior kindergarten kids, but socially, her hill is a little bit steeper than most. So what happens when you add a baby seat to the mix? Many of these kids likely have infant siblings who use the very same seat at home. What conclusions about how to interact with Addie could be drawn in these fledgling minds and hearts, seeing her silent in a powder pink piece of baby gear?

I have no doubt the suggestion was not about any of the above and more about making sitting on the carpet something less complicated for the teacher to deal with. Which is certainly valid. And I understand how taking wandering out fo the picture could help Addie attend the carpet activity better. But I did not breathe before my mother-perspective of the damage this idea could do triggered my sharp reaction. And I compromised the message itself in doing so. If anyone but me remembers this scene from the meeting, they are not thinking about what a raw and unfinished suggestion it was, they are thinking about the "typical" self-righteous, bitter mother response to it. But I'm nearly certain the moment is completely gone for most people in the room, except my husband and I.

If I had it to do over again, I'd do it very differently. The good and the bad news is - I'll have chances to practice shaping my gut outrage into constructive advocacy every day left in my children's lives.


Cindy said...

I'm with you on the makes me wonder if any of those teachers are doing anything more than telling you what you want to hear. But I appreciate your "lessons learned"'s something to keep in mind as those meetings begin with Natalie, that our response be constructive even when their comments are not.

Dawn said...

Not sure that it will help but I agree with you! A Bumbo??? And I think any Mom would have reacted the same way. I can't believe that in a world with all the wonderful interventions available that a bumbo would even seem a logical suggestion. I am a special education teacher and can't imagine suggesting that unless the child truly couldn't sit up. Good for you for being an advocate for your child! I wish more of the parents would take the initiative that you have taken. There are lots of things that can help with attention and wandering that are both age appropriate and fun :)

Jacqui and Lloyd said...

I am realising that it takes such skill to be an advocate for our children. I still am at the beginning of this road. Wow what a balancing act of keeping one's (mostly justified) emotions in check in order to ensure that one's message is received by the therapist/medical professional.

PS I asked Matt's physio about the Bumbo chairs as many of my friends use them for their babies. She found they were unhelpful on the hips or something like that??

Tena said...

Wow. Just wow. I so admire you and your tenacity. Our meeting will be tomorrow morning and I hope to be the same, strong advocate you are. ((hugs))

Terri H-E said...

Thanks, Cindy, Dawn, Jacqui and Tena. Over a week has passed and it still boils my blood a bit. I think part of it was also that Addie's current team suggested a baby tool in front of her new team who may draw some conclusions from a comment by those that supposedly know Addie. That may have been more what fueled my lopping that idea off at the knees.

Tena - we'll be right in that room with you tomorrow, Addie and I. People like to tell us to leave emotions out of it. Nope. Use the emotions to power you, but wrap them prettily in a neat business-like, objective-SOUNDING tailored cloak... and you'll be halfway there! Hugs back to you - it's in you, I've seen it. Let us know how it goes.