A Parent’s Perspective on Inclusion

Comments made to the AUSD Board of Education on April 24, 2018 as part of the presentation of the draft strategic plan for special education. The recording is here; speech begins at 20.07.

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This banana slug moment brought to you by inclusion!

My 11 year-old-son has had an extraordinarily challenging journey through the public special education system so far. He has had to change schools every year from Kindergarten through 5th grade. He has Fragile X, a rare genetic condition that causes intellectual disability and other issues, and has been educated primarily in special day classes. It has been very hard to find a classroom environment in which he can thrive. My husband and I have often found ourselves tired, frustrated, and disappointed with the educational challenges we have had to deal with.

At the same time, I have felt that both my son and our schools have so much potential. My son is happy, curious, and eager to learn. He loves books and can read third grade words. We have had the opportunity to work with many dedicated professionals who are bright, patient, and very hardworking. I would like to see my son and the people who work with him fully supported in a system that values them all.

It was with this mix of frustration and hope that I approached the special education strategic planning task force. I appreciated the chance to think about the big picture of special education with others, to review reports and data, and imagine how these might apply to students in our district.

A focus of the plan that I want to highlight is the emphasis on inclusion. Inclusion is weaved throughout the plan, from the mission statement through the values, priorities, and action steps. I want to give you a couple of examples from our son’s education that relate to inclusion.

Last month, our son went to a two-night Science Camp with the 5th grade class at his school. My understanding is that he is the first child with a moderate-severe disability placed in a special day class from his school to join the trip. Making this happen required the support and planning of several people, and our son needed an aide to be able to participate. My husband and I worried that after all this work, it might be a negative experience for our son and others. At the meeting a couple of weeks before the trip, I said, “Well, if this is a disaster, we will have learned a lot about what does and doesn’t work.”

Our son shined. Not only did he behave well, but for three long, full days, he did All The Things. He hiked in the day and night. He listened attentively to nature lessons. He dissected a squid. He tested water. He touched banana slugs. He talked about the experience for days afterwards. He was an engaged learner.

I know not every day can be like Science Camp, but every day can be an opportunity for exposure to rich content and deep learning.

I know the board recently made some tough budget decisions, and board and community members may be wondering how we can pay for the supports and services noted in the strategic plan. I believe much of the work of inclusion can be achieved through adapting our thinking and engaging in a little creative problem solving.

A few months ago, my son’s teacher, who gave me permission to share this story, contacted me recommending that my son change music classes. He had been participating in third grade music class for a few months, but as they were beginning to use the recorder, and my son and other students from the special day class were getting frustrated with the fine motor skills needed to play the recorder, it might be best to move the students to a music class for younger children.

I began to search the internet for adaptive recorders and found some. I offered to purchase some for the class to use. The teacher told me the next day they found that with a piece of scotch tape covering the hole underneath the instrument, my son could now play (a little). He has remained in the same music class all year. He is not a virtuoso. But he doesn’t need to be. He just needs to have the same chance to play Hot Cross Buns off-key that his typically developing peers do.

Though I have appreciated the opportunity to think about how to include my son with school staff, I also look forward to the day when inclusion is simply the way we do things. In both of these situations, and many others that I do not have time to cover, parents and/or individual school staff have had to nudge (well, more than just nudge) to make meaningful inclusion happen. We would like our son, and all children with disabilities, to be included with their gen ed peers to the greatest extent possible in class, in extracurricular activities, field trips, student clubs, sports, and more. The strategic plan lays the framework for inclusion and will help our school district to ensure that everyone belongs here.

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