This article was originally published in the book Fully Included – Stories to Inspire Inclusion by Michelle Tetschner & Stacy Tetschner.
Our vision for inclusion started when my son was just little. When our son was young, we searched out older children and youth with Down syndrome around the country. We looked for self-advocates that were good speakers, those who were truly advocating for themselves and the Down syndrome community. We asked questions, and the main commonality we found? They were fully included in school!
This became our goal!
We had to learn early on, to be strong in our commitment to that vision.
We had almost completed kindergarten and were at our spring Individualized Education Program (IEP) Meeting. The team suggested that we look at a co-taught program at another school. While we were not excited about moving our son, we were open to the idea. We trusted their recommendations and went to tour the new school. The teacher seemed amazing, and the idea of co-teaching was very intriguing. We agreed to try the program in the fall. When fall came, the teacher we had met in the spring seemed very different. She was not outgoing and happy but appeared overwhelmed and frustrated. I didn’t know what to do or think. I was able to observe that first week and was very disappointed with what I was seeing. Nothing was glaringly obvious, but the staff and children seemed very unhappy, out of sorts, and no one seemed to know what was next or who was in charge of what. I tried to remain optimistic.
I went back the following week and was only planning to stay for a short time, but I stayed for 1.5 hours. I didn’t want to leave my son there. When I asked questions about the “co-teaching” program that we had signed up for, I was told that this plan had changed. There were now too many kids in the special education portion of the class and now they would only do a co-teaching program 2-3 times a week for social studies only, for only thirty minutes, and he would be in the self-contained room the rest of the time. This is not what we had signed up for. I left in tears, taking my son out early for the day, knowing I couldn’t send him back there again.
I called for an IEP meeting the next day.
Keeping the story short, we had the IEP meeting. It went badly. In my memory, I can still clearly see the older male school psychologist stand up and angrily say, “How dare you question my expertise!” and “I know what is best for your child! I have been doing this for over 50 years.” and “No, I have not met your son, but I have read his file.”
I got up and left the meeting after that statement. Sobbing. I could barely drive home. I was so angry and so sad. I was so upset and so very disappointed in our school system. How could they honestly think they know my son better than me? And how could they possibly think they know what is best for my child? When they hadn’t even met him?
After lengthy discussions with the school district, we were able to go back to our old school, back to the principal who adored my son, and we repeated kindergarten again. With the principal smoothing the way, we were able to get back on track. Our teacher that year was open to the idea of having my son in her class and she quickly fell in love with my son, the same as she did with all her other students.
By repeating kindergarten, my son was able to keep up many times during that second year.
Because he was repeating, he knew the routine and knew the expectations. He was more confident, was able to be a line leader and was able to navigate the school grounds. He was able to feel successful and grew more confident each day.
My son, like many kids with Down syndrome, loves routine. He loves to know what is next and what is coming later.
Repeating kindergarten allowed many of those fears and worries to be alleviated because he knew what was coming, he had done it before!
Academically, he did awesome.
He had already been through this once! Now these numbers and letters that he was learning were repeat material for him and in that second year his growth matched many of the lower students in his class.
He made slow and steady progress and he gained social skills like crazy! He was loved by all his peers. He was greeted enthusiastically every morning and was often found walking hand in hand with peers to and from the playground.
Children with Down syndrome learn by watching and practicing and are especially good at mimicking their peers. They learn social cues from seeing interactions and copying them. Having him be around his gen ed peers, hearing their rich language, and seeing them in action is vital to how my son learns best.
Looking back we are so grateful to that school and principal. The foundation that was built in those years, has carried through to today.
There is simply no stopping my son when he wants to do something. He can be very driven and motivated if the subject interests him. He has been in several school plays, has played on school basketball and baseball teams, and is getting B’s for grades. He is also a good reader and loves to do his accelerated reading books and tests. One of his favorite positive behavior rewards was reading with a peer of his choice! He adores science and doing the labs with his fellow students. He is great at memorizing his study/Dolch words, though he may only have 8-10 words compared to the 20-25 words that the other students have. His academic growth continues to be steady and strong, and we have been lucky to find educators who will meet him where he is and grow from there.
There is another side to this story—what about the general education students? It’s amazing when you can step back and see what a wonderful teacher my son is for his fellow students. His peers have learned how to interact with him, how to help him, and how to be friends with him. They have learned compassion, patience, and kindness. These students are our future doctors, lawyers, nurses, and teachers, and they need to know how to be around all neurodiverse types of people. They will be the people to hire my son, work with my son (and others with special needs) and be his friend and neighbor.
For us, we looked to the future. For us, using a second year of kindergarten at the beginning of his education was logical. We looked at it as building a firm foundation. We know that my son wants to go to college just like his brothers. When that IEP meeting happened 10 years ago, a college program didn’t seem like an option. But now there are over 260 college programs for people with disabilities, and that number is growing. My son states clearly that he wants to go to college, just like his brothers.
My son is now fourteen and is still fully included at his school in the seventh grade. It hasn’t always been easy to convince each teacher and school just how amazing my son can be. People are often amazed at all that he can do and all that he can learn, once they open their hearts and minds to how he truly wonderful he is.
My son is more than a diagnosis, he is a boy who happens to have Down syndrome.
Pushing for inclusion has been a somewhat bumpy journey, but completely worth it.
We all live together in one world.
We all just want to belong, be successful, and be loved.
Michelle Tetschner is happily married and a mom to three boys. Her youngest son Raymond is 16 with Down syndrome. She is wildly passionate about inclusion and believes that we are all worthy of being included! Michelle is an author, writer, advocate, and entrepreneur. She lives with her family in the Washington DC area.