A year ago, I walked into Eon’s kindergarten transition (IEP) meeting loaded for bear. We wanted full inclusion for our son and we weren’t leaving until we got it. We didn’t realize until near the end of the meeting that inclusion was the plan and had been their plan for him all along. I left the meeting like a deflated balloon, slightly dazed and confused, but relieved.
It was a great year. My biggest fear was that his teacher would resent having him in her classroom and be harsh with him or, conversely, she would love him, but have low expectations for him and treat him like a mascot. Neither happened. His teacher was amazing and just perfect for him! She treated him as she did all the other kids in her classroom and expected him to behave as such, and he did. She adored him, but was immune to his charms when he attempted to manipulate her to get out of doing hard work. In short, she had his number.
He thrived. He is a beginning reader (reading!), is doing simple addition and subtraction problems, knows all his shapes, can tell us all the parts of a story, etc. He got himself off the bus and to his class like a boss, hung his backpack, circled his lunch menu, put his folder in the teacher’s basket, and started his seat work every morning.
We received nothing but good reports. So this year, I was a relaxed mama walking into the IEP meeting. And for forty-five minutes we heard about all the progress he made toward his IEP goals, how well he fit in with his typical classmates, how good his behavior was, what a joy he was to teach, etc. After every member of the team said their piece and filed out, I was stunned to hear the recommendation from the mild special education teacher who was running the meeting.
“So, we want to pull him out for the reading and math blocks next year and take him to the resource room so he can focus on his goals in there.” She continued talking and, as she added up the time with therapies pulling out, she divulged he would be gone from the general education classroom about 50% of his day.
What the what?
I sat there like a deer in headlights with a phony-try-not-to-cry smile pasted on my face. I managed to ask what the reasoning was and it was basically because “First grade is intense and moves really fast. He won’t be able to keep up or stay on grade level. This way, he’ll be able to focus on his goals in a small group setting.”
I did not object. I felt bushwhacked and completely unprepared. We were not asked to sign it because PT still needed to complete her goals. I would not have anyway. That much I knew. I cried the rest of the day.
And then I got busy and brushed up on my knowledge of IDEA. Turns out, a child cannot be moved to a more restricted environment (aka, resource room or self-contained classroom) solely based on his inability to maintain grade level. He doesn’t have to maintain grade level. That’s why he has an IEP! He only has to make progress toward those goals. Which he clearly was…in an inclusive setting.
I called the mild special ed teacher the following week. I apologized for not speaking up in the meeting and told her about our misgivings. I laid out our vision for Eon and inclusion. I told her about the law and asked that we reconvene. I asked to observe the first grade classroom prior to the meeting. She agreed to all of it but again told me she thought he’d do “better working on his goals in the resource room.” I asked her for research to back up claims that children make more progress in self-contained classrooms or resource rooms. On the face of it, it sounds good and seems to make sense, but I’m only seeing research that supports inclusion for desired outcomes. She is a new teacher and told me that she actually did a whole research project/paper last year supporting inclusion and didn’t have anything to give me to contradict it.
I continued to cry much of the week (my singular response to stress of any kind) and continued to research and make sure I knew his rights under the law. I was frustrated that I needed to know all that, frankly. Good golly, we’ve got enough on our plates, for crying out loud, without having to school the school system on their legal responsibilities toward educating our child.
I agonized over whether this was the right decision for Eon. I know the research supports inclusion for the outcomes we desire for him – increased independence as an adult, improved odds for secondary education, increased chance for meaningful work as an adult – but if this school doesn’t really believe in inclusion, the school year could be a disaster.
Basically, I pushed and then second-guessed myself for pushing the rest of the week. By the time I went to observe the first grade class, I was an emotional basket case. Thankfully, when I waffled on my inclusive resolve to the mild special ed teacher, she wouldn’t hear of it. She reminded me, “He can always go into more restrictive if he needs to, but there’s no reason to start his year there.” Eon’s first grade teacher for next year was equally as wonderful and fully supportive. She’s a firm believer in peer-modeling and reminds me a lot of his kindergarten teacher.
The next day, we reconvened the IEP. I was very clear this time in sharing our vision that Eon be included throughout his school career. I reminded them that in our current culture, a person can be successful in life if they get along well with others, even if they’re not the sharpest tool in the shed. The major way Eon is going to learn to read people, to experience community, to develop empathy, to reciprocate socially is by being with his peers. Everyone was on the same inclusive page. We added in supports to ensure his success. We discussed plans to modify his curriculum and tests. We discussed ways we plan to communicate and trouble-shoot issues as they arise. His team was wonderful! It was very positive and affirming. And I breathed a big sigh of relief…and didn’t cry.
I want to emphasize that while I am a huge believer that inclusion is absolutely the right placement for EON, I am a bigger believer that every parent and team needs to decide the right placement for their individual child. I am amazed and appalled at the internal bickering I see among those in our Down syndrome community, especially when other parents want to use their own choice as a blanket decision for all children with Down syndrome. We are talking about Individual Education Plans.
I have two boys with Down syndrome who are as different in personality, preference, and ability as night and day. The only things they have in common are a last name and an extra chromosome. Eon will be attending first grade, fully included, in a general education classroom next year. His brother, Bo, will be attend kindergarten in another elementary school in a self-contained classroom. Those are the right placements for both boys and they will excel in their own ways. We couldn’t be more proud of each of them. To put either child in the other setting would be a grave mistake and such a disservice to that child.
We need to trust each other as parents that we’re doing the best we can for our kids. We need to recognize that none of us has a crystal ball but each of us would kill for one to know the best decision in every situation for our precious kids. If someone seeks your knowledge or advice, they are not giving you decisive power into their lives. Don’t take it personally if they choose to make a different decision. You don’t have all the information and you certainly don’t have the relationship, the love, and the guilt they do in parenting that child.
For those of you facing the IEP, you can do it. There is grace for that.