I blinked and our initial meeting with the state at Henry’s 27 month birthday was upon us. They came this week. Maybe I knew they were coming at some point but it got lost somewhere between a voicemail, email, or snail mail and didn’t get put in my phone. So there we were. I had just gotten home from my first outing with both boys. We had gone to Henry’s parent teacher conference at school. And God smiled upon me and both little ones were asleep by the time we pulled in the garage. I relaxed. And the doorbell rang. Face palm. As the ladies explained the next steps for Henry, my mind wandered and I found myself thinking about the special education I knew and the options available now.
The myth is that segregated special ed programs are the only option for kids with Down Syndrome. Kids with DS typically do best in an inclusive learning environment, and typical kids do best when they learn about diversity, kindness, and friendship at an early age. Inclusive classrooms teach and benefit all kids.
Students with DS are included in typical academic classrooms in schools across the country. The current trend in education is for full inclusion in social and educational settings. Despite ignorance from our current secretary of education, parents and educators are still fighting for forward progress. Even at the Bell Center, Henry is in a class with some neuro-typical peers.
Sometimes students with Down Syndrome are included in specific courses, while in other situations students are fully included in the typical classroom for all subjects. Increasingly, individuals with Down Syndrome graduate from high school with diplomas, and participate in postsecondary academic and college programs.
I go between having pretty severe anxiety about Henry’s education to complete peace and there is no in between. Henry is now 2 years old, the public education train is on the tracks, and I feel our first IEP looming ahead this fall. I’m scared. It’s always scary to have someone sitting in judgement of your child. I know this will mean decisions about inclusion and aides and supportive devices and I can only offer our family plan sheet and answer the questions. This will set the pace for his entire educational experience.
I have no doubts about his intelligence, but I just want him to have every opportunity to learn everything he can. Henry loves books and has turned pages independently and sustained attention through them in their entirety since he was about 8 months old. Our coffee table is now completely taken over by Henry’s books. Our favorites will be read no less than 3 times in a row with Henry guiding our hands pointing to the text and illustrations. His attention span is vast and endless for books.
Tasks are harder. We have to fight for 30 seconds of fine motor activities sometimes through tears and tantrums. He will watch an entire movie if he is into it and began when he was 12 months old with A Christmas Story. I hate that movie. He loves it still. We like real actors preferably children. You can get cartoons out of here because he will not watch. Baby Einstein baby signing videos with real children are a hit sometimes. He hates puppets. He hates claymation. He hates most computer animation. Pixar is just now getting his partial attention.
I LOVE our school system and that keeps me feeling mostly positive about Henry heading off to school. Their record of providing the best inclusion and opportunities for children with disabilities is amazing. I relax a little knowing he will have teachers and therapists from the state program and from the Bell Center to offer suggestions and provide insight into his abilities.
Henry does not perform on command. In fact, he stubbornly shuts down sometimes. He will A) pretend to sleep, or B) try Charlie Brown face plant and then move at lightning speed around the room. He wants to move and be on the move most of time so slowing down for any activity that is not in his preferred list is HARD. It’s like trying to go to a rodeo goat roping. A goat roping with 3 wild goats covered in Crisco, half a yard of rope to restrain them all, and comes with the same sounds you are imagining right now. Belts. Nays. Grunts. Pleading. Praying.
Henry will be entering the public school system in pre-K in the 2019-2020 school year. Alabama public education, look out because here we come.