Kimani and Masha’s IEP Meetings — The Good, the Bad and the Ugly

We just got back from our amazing vacation in Costa Rica, and that is what I wish I was writing about this morning but instead I am already fully immersed in the stresses of our daily life.

Yesterday we had back-to-back IEP meetings for Kimani and Masha. We walked out of both meetings feeling unsure about what to do next. In Kimani’s case, we thought we knew where she would be placed for first grade. When we looked at programs over the winter, we had decided she would go into our district’s most restrictive self-contained classroom. (But they were “not ready to handle her.” So we accepted the next best alternative and focused on the positives.) During our visit to “Rose’s Room” which is apparently the best name they could come up with for the program, Kimani was a terror. Thankfully, Rose took the time to meet with her in a conference room and after a few minutes she said that she would love to have Kimani in her class next fall. I was thrilled and we went forward assuming that the BOCES program she was going into was just a stepping stone to Rose’s room.

Rose was not at Kimani’s IEP meeting. The only people there were her current team members, the director of special education, and us. They went around the table updating us and making therapy recommendations. Afterward, the director explained to us that the BOCES program is moving to another school in the district but that the team would remain the same. That was when I knew for sure that there was no intention of moving Kimani to Rose’s room. I spoke up about it and reminded him of our winter meeting, and of what Rose said about wanting Kimani in her room. He replied, “Rose will say anything.”

What the fuck is that supposed to mean? 9 days of blazing sun, roaring waves, great sex, delicious food, and tropical drinks instantly vanished and my adrenaline started rocking. In front of her whole team we were basically asked what is wrong with what she is getting now. Why would we want to move her?

And I don’t know the answer. The reason I don’t know the answer is because no one has ever been able to explain the differences in the programs to us. Instead of describing the programs, they describe the kids that “belong” in them. I feel so unsure about which program is best that I could literally flip a coin and live with the results. Does that sound like giving up? How can you fight when you have no idea what’s behind door number 2? We left it up in the air. And so we will go back to square one and try to get answers about the program differences.

Meeting dismissed, and then we reconvened with Masha’s entire team, plus the special education chair person. The director kicked off Masha’s meeting by telling us to “hear him out.” Any parent who has ever been in an IEP meeting knows right now that this is a bad start.

Bottom line, they don’t want Masha in Gen Ed. They have never ever  from the very start wanted her in Gen Ed. They have fought us, cajoled us, misled us, and pressured us in every meeting to put her in the self-contained classroom they have for “kids like her.” It is so damn hard to listen to a room full of people who don’t believe in inclusion, and don’t believe in your kid.

I have never seen inclusion in action working as it should. I hear snippets about it online. I read blog posts from parents whose kids are doing it. But I have never actually watched how it is done in a classroom. It is hard to fight year after year for something you have only read about. So we brought in an inclusion professional for a consult at the end of last year. She observed Masha and the team a few times in different settings. She said that Masha is the perfect candidate for inclusion, and that they need some work as a team to pull it off. After she reported her findings, I was told that the team did not like her style and felt that she was patronizing and too negative toward them. I was told to find someone else because Masha’s team was unable to work with this expert because of their feelings toward her.

This year we had some testing done to find out how Masha learns best. The results were all about how not smart she is. During my discussion with the school psychologist who administered the tests, I actually got to hear about how those other kids with Down syndrome (who I said are included all over this country) must be smarter than Masha. BAM!! BAM!! That’s me slamming my head against the wall.

Maybe they are smarter than Masha. Apparently Autumn has about 17 IQ points on her. But is that really something that should shut her out of Gen Ed? Masha is on track to meet her academic IEP goals for this year, which proves she can learn in a Gen Ed setting. But they insist that she is out of the room so much that she may as well be in the special classroom across town where she will belong, have community with her peers, and be taught the life skills she will need (presumably to wipe tables at McDonald’s someday).

They don’t know how to do inclusion. They won’t admit they don’t know how to do it. They do admit that they don’t have the budget to educate Masha in Gen Ed (yes, I know they can’t use that but at least they were honest about some of their motives.) They offered us a compromise. If we will send Masha to the self-contained classroom in the school across town, they will let her be with a regular first grade class for 50% of her time. Of course they had no specifics of what that would look like, and right away gym class came up as one of those “perfect opportunities to include her.” Ha ha, gym class, lunch, recess, art, and music…. are we at 50% yet? Do we really look that naive? No no no, they said, they will have her in the real classroom for part of the day. We left it up with us asking them to lay out on paper what an average week might look like for Masha under this plan. We told them we would think about it.

And I am thinking about it. Too much. It is eating away at me. Masha cannot count to ten. Masha cannot recognize all the upper and lower case letters in the alphabet. Masha can read about 15 sight words but sometimes even mixes those up. Masha still gets a little confused about colors and shapes. But Masha can follow the rules, and she can participate, and she can learn lots of other things. And Masha loves school. She loves homework. I know in my heart that if they could get it right, she would be ok in Gen Ed first grade, but I also know just as well that they cannot get it right.

I wish I had a crystal ball. I wish I could see her two futures and decide which way is best for her. The weight of making the right choices for her is crushing us.