Wednesday, October 30, 2013


Forget all those other milestones. Forget rolling and sitting and standing and walking and saying the first word. None of these long-anticipated milestones comes close to measuring up to the IEP.

At least, that’s how I felt before we had our meeting with Max’s new school.

As a teacher I’ve attended countless IEP meetings, contributing my input to the pot of academic and behavioral mush that special educators sift through to create an individualized education plan. (That’s what IEP stands for.) It’s a legally binding document detailing everything the school intends to do in order to make the school and the curriculum accessible to the student. I’m never part of the testing that precedes and informs these meetings, and because I’m a high school teacher I rarely witness the creation of the original IEP. That usually (hopefully) happens earlier in a child’s academic career.

These IEP meetings can go in any direction. They can be frustrating, productive, enlightening, informational, uplifting, discouraging, argumentative. They can even stall out when nobody agrees, needing to be reconvened another day.

In light of all the meetings I’ve attended I’m surprised to realize and a little embarrassed to admit that I’ve never truly tried to put myself in the parents’ shoes. I’ve never really wondered what it felt like to have almost strangers talk so clinically and cold about my child. I mean, Max has a number of medical specialists and their talk is clinical. This should be just the same, right?

Wrong. I don’t really know why, but it’s uncomfortable and at times, upsetting.

I think there are a few things at play here. First, even for Max’s heart failure and subsequent heart surgery we were never visited by more than two physicians at any one time. Four therapists / educators attended Max’s IEP meeting. They sat together at one end of the table while Sean, Max’s early intervention case leader and I sat at the other. It felt a little like a face-off. Second, all that medical stuff—heart, ears, throat, eyes—it’s got nothing to do with me. What I mean is, nobody could ever accuse me of making any of it any worse. Well, I suppose in theory they could but I have no doubts of any kind that we did everything exactly as we should have. But having what amounts to a panel of experts talk about all of Max’s developmental deficiencies starts my own insecurities bubbling up and I wonder if any of them think we aren’t doing everything we should be doing. Maybe they think—and maybe they’re right—Max would be talking, for example, if we had worked harder at it for the last three years.

I can’t continue down that path, though, because it’ll make me nuts. Parenthood brings with it enough guilt as it is. I really can’t add any more to it.

So, back to the meeting. That Friday morning we spent the better part of an hour discussing the various evaluations the school performed in anticipation of the IEP. Here are the results, in a nutshell:

Gross motor: Max is around the 18-month mark having begun to walk less than a year ago.  Not bad.

Fine motor: As I’ve indicated in previous posts, this is Max’s strength. He tested at 22-24 months. I think that’s great.

Cognitive: 12 months. Considered “very poor.” Whoa. Okay. Mentally, Max is one year of age. Really? Hmm. That’s gonna take some time to digest.

Social-emotional: 9 months. Also “very poor.” What? I don’t even know what to say that.

It’s hard to hear and see those results, especially when we see Max for all the awesome things he can do. But that’s just it. We compare Max to Max and every day he wins. The school, though, compares Max to the general population. With that as the standard there’s no wonder all they see are his deficiencies. As understandable as that may be, I didn’t like that focus. It made me feel…bad.

Finally, as we closed in on the hour mark, we discussed the IEP. Here’s what the school proposes:

Max will attend preschool five days per week from 1:00 – 3:30. He’ll be placed in a non-integrated classroom with about five other students. He’ll receive PT twice per week and OT once per week. Both will take place within his classroom. The speech therapist will pull him out for one-to-one sessions three times per week. His teachers will put special emphasis on teaching him classroom routines like hanging his own jacket on a hook and lining up to go outside.

We’re a week and a half out from the meeting and I’m feeling good about the outcome. I didn’t at first, though. Max spends a few full days at daycare every week. He can handle the time, but his classroom is small. However, to my knowledge all of the little ones in his daycare classroom are typically developing and I think the exposure has been tremendous, motivating Max to achieve independent locomotion.

We were hoping he’d be in an integrated classroom, but after learning there are about 20 other students between the ages of three and five, we’ve come to the conclusion that the more intimate environment suits Max a bit better. Crowds overwhelm him. Sometimes he shuts down.  His afternoons will be far more productive if he remains comfortable enough to engage in the activities.

And now we have a preschooler. Neat.


Monday, October 21, 2013

Lots of Little Buddies

The Buddy Walk was last, last weekend. There are three of them in Massachusetts, but the one we did is a three-mile walk around Lake Quannapowitt in a really cute town about an hour from us called Wakefield, MA. It’s hosted by the Massachusetts Down Syndrome Congress, and according to them, this year was the largest ever topping out at 3500 walkers. Wow!

Confession: I didn’t fundraise very well this year. Chalk it up to the new baby and extreme sleep deprivation. Next year I’ll be better. I have daydreams of leading a team of, I don’t know, 20 or more and raising thousands of dollars. Some people actually do it. Someday.

And they're off!
Little brother's first Buddy Walk.
Little brother gets a kiss.
Max and Signing Time's Rachel Coleman.
Finally, three years into this journey I feel like a part of things. I no longer feel like an outsider trying to fit in, trying to come to terms with a future that, though beautiful and bright, I didn’t choose. I no longer feel like I’m playing catch-up along a never-ending learning curve. I’m now confident enough to offer support to families who are new to all of this. It’s exciting and empowering and gives me that sense of control that I hate to admit makes me feel more comfortable.

In fact, thanks to my new friend, Tiffany, and her beautiful baby, Xavier, I, or I should say we have turned the little, informal playgroup that Max and I have been a part of into an official, formal support group. It’s awesome!! Saturday was our first official gathering, and it was everything I hoped it would be. We’ll be meeting again in two weeks and attempt to continue the every-other-week schedule. The MDSC even wants to include our info on their official support group list. Neat!

Most of the Franklin Area Trisomy 21 Club
Well, I wanted to spend more time and energy on this post but we are sleep-training Chance this week. He’s upstairs right now screaming, my heart is pounding, and I’m a millimeter away from rescuing him from his agony and undoing all the progress we’ve made. Needless to say, I’m distracted, so before I start meandering I’ll sign off.

Take care my friends.