We talk a lot about inclusion and crafting the perfect Individualized Education Program ( IEP). We attend workshops. We read books, we join Facebook groups, we participate in Wrightslaw seminars. We do everything humanly possible to get our children the education they deserve, that’s required by law.
Often, it isn’t enough. And it’s not our fault.
Everyone sees inclusion differently. Some schools think meaningful inclusion is “allowing” a child with a disability to eat lunch with his or her peers. Others think encore classes are enough. Others see pushing into a general education (gen ed) classroom every so often as enough. Some schools are on board with students with disabilities being in the gen ed classroom but even with an ironclad IEP and supports in place, they don’t know how to execute inclusion properly. The teachers say they are excited to work with a student, but their actions and emails prove otherwise.
When my now 8-year-old son Arlo was born with Down syndrome, I became both a mother and an advocate. I attended every conference possible. I networked. I learned that alphabet soup of never-ending acronyms. I aligned myself with seasoned advocates and eventually became one. I knew what to do to get Arlo what he needed. He had an amazing preschool teacher that helped. She laid the groundwork to get Arlo a one-on-one aide. Together, she and I made sure he was fully included in the dual language gen ed classroom at his neighborhood school.
Kindergarten was a dream. Aside from a speech language pathologist who said she did not know how to work with him in the classroom and suggested the segregated Intellectual Disability (ID) classroom, everyone was supportive and thrilled to be not just teaching Arlo but learning from him.
The honeymoon was over in first grade. He was still technically included, I used my training to make sure of it. However, after an incredibly difficult meeting it became clear the teachers didn’t feel he belonged. I tried to nurture the relationship but with a 3-year-old and 1-year-old at home, I was just getting by. When I did see the teachers, they barely made eye contact with me. I am not a mind reader, but non-verbal cues speak volumes.
Arlo started 2ndgrade last fall. While his teachers were very kind, I felt like I was being kept away. I offered to volunteer and the response was just an awkward smile. I would get regular emails about all the things Arlo was doing wrong or wasn’t doing. He was sent home with homework that had no accommodations. I was told he was disruptive. The school district was having staffing issues so Arlo was not receiving occupational or speech therapy services for weeks – putting him at a catastrophic disadvantage for learning. He is more than capable of writing his name, but no one on of his second-grade team knew that.
When we found that we were relocating to upstate New York, I was relieved. My husband and I were already discussing switching Arlo to a different school. Moving offered a fresh start without the hassle of proving his current team could not meet his needs.
My son started at a new school in January. He transitioned to yet another school this fall. And I no longer get regular emails describing how difficult he is.
One of his gen ed teachers keeps a copy of “Including Children with Down Syndrome” on her desk. Another took the time to make a home visit before the school year started to get to know Arlo better. We had a monthly team meeting added to Arlo’s IEP at the school’s suggestion. Teachers adjust their schedules so Arlo doesn’t miss out because of his many doctors’ appointments.
I have been flooded with positivity from Arlo’s teachers about what a great student he is. When I observed him in class this spring, his special education teacher gleefully demonstrated how well Arlo could do sentence structure on the iPad. “This is him handwriting,” she told me. “Don’t ever doubt that he can’t write, this is how he writes right now. He is doing it.” I was in shock.
One of the most unexpected changes: Arlo has received more invitations to parties and playdates from his new classmates in the 10 months we’ve been here than he had in his entire 6 years of schooling before this.
Inclusion is a given here. Parents don’t have to fight for their child to be in a general education classroom. Parents don’t have to fight for more push in time, IEP teams agree to it without flinching. Student needs one-on-one assistance? No problem. Issues going to the toilet? Not an issue with the school. Not able to walk or talk? The school works to accommodate those students in the gen ed classroom and give them the supports they need to do it successfully.
Children are intuitive. They can sense when adults question whether some children belong. The negativity and doubtful energy transfers to the students. Attitudes are infectious. And that explains a lot about why Arlo is suddenly not just a classmate, but a friend. Students accept him as an equal because the teachers treat him like one.
We’ve gone from meetings where teachers have told us how disruptive Arlo is because he lays on the floor, to spontaneous, glowing email updates talking about what new interventions are working.
We’ve gone from phone calls discussing how to discipline Arlo to productive conversations on how to give him positive supports to prevent negative behaviors.
I’ve gone from fighting to make sure he’s included in school to actually being able to focus on his academics.
It’s not perfect, nothing is. In fact, I have had some hair pulling frustrations about IEP compliance, no OT services, and a lack of accommodations for his hearing loss. Schools will always have staffing issues and money constraints.
The difference is the attitudes.
Arlo belongs, not because I fought for it. Not because of a carefully worded IEP. Just because. And that is how it should be, for every kid, everywhere.