Thursday, May 05, 2016

Advocacy Portrait #1

I'm not a natural at advocacy work. Public speaking gives me hives. And making time to meet with community leaders and citizens is a huge effort. But I see it as a necessity as I send my boy forward into the wider world. And the more I advocate, the more I see that one person can make a difference and that keeps me going. That, and the boy with the Hope. 

Last November I met with our superintendent of schools to discuss what I see as systemic obstacles to including kids like Oliver in the general education classroom. It took me a few weeks to get up the nerve to make the appointment but I was rewarded with a sympathetic ear and I left with an invitation to address a meeting of our city's school principals. Below is a transcript of the remarks I made back in February.
I’m here today out of my desire to see [Our] City Schools embrace a model of inclusive education for students with disabilities.

I’m the mother of a 13 year old boy, an eighth grader at [Our Middle School]. I’d like to tell you a little bit about Oliver and what I’ve observed and experienced as we, together, navigate the public school system. 

Oliver is an extraordinary kid. These days he loves Bob Dylan and Biking. And now I’m going to brag a little bit and tell you: Oliver has ridden his bike more than 3,000 miles (since we started keeping track a few years ago), He has biked in 7 countries and many major cities including, Zurich, Halifax, Buffalo, Richmond, Charleston, Savannah and many more. Oliver is also significantly challenged by autism. He doesn’t speak. He struggles mightily with impulse control. He battles anxiety. And the motor differences that come with apraxia mean that he often struggles to get his body to do what his brain asks it to. To give you some idea of what this means for him: It took 6 months for Oliver to learn just to pedal his bike.

We chose to homeschool Oliver back in 2007 rather than place him in a self-contained kindergarten classroom, where we were told he would receive specialized services so that he could learn the skills that he would need to be able someday manage in the regular classroom. At that time, he was 6, he had no functional communication and his IQ had been assessed to be about 70. And as far as I could tell, these two things kind of drove the train when it came to deciding his educational placement, because when I asked about a regular classroom, I was told that he wouldn’t be able to keep up, it would be too confusing for him and that he would get very little out of it.

At the time, these seemed like reasonable assumptions to make, and I didn’t know about the decades of research on inclusive education that showed that all children have better social and academic outcomes when kids like Oliver are included alongside their non-disabled peers-- so I didn’t advocate for a different placement. But on a real, visceral level, I also wasn’t comfortable with the segregated environment of a self-contained classroom. I felt I had little choice but to homeschool and I did so for seven years. 

In 2012, when Oliver was 10, he finally achieved a means of reliable communication. Over the period of a year, he learned to type and we learned a lot about him in the process, including that -- according to newly administered IQ tests, Oliver was much smarter than both of his parents. And one of the first things he told us was that he wanted was to go to school. 

“Perfect” I thought! “Middle School is a great time to begin your public education!”  And to be honest with you, I tried to talk him out of it. But when your child, who has never really been able to ask for anything, says that he wants to go to school like everyone else, the thing to do is to set aside your fears and find a way to make it happen. 

I was prepared for the experience to be akin to navigating an emotional black hole. I fully expected that I would give it my best shot, find it impossible, and end up homeschooling Oliver again within a year. But that’s not what happened -- and this is where you all come in -- because it speaks to the committed professionalism that you foster in our schools. Because what I found instead was that Oliver was supported by an incredible team of professionals who wanted to see him succeed. They work very hard and care very deeply. And, importantly, they include me as part of that team.  Now we all know that parents are supposed to be part of the team but it doesn’t always work out that way and so I was very appreciative. It also gave me some insight into the troubleshooting that goes into helping Oliver succeed in a regular education classroom. We’ve done a lot of troubleshooting over the last year and a half. It has not been an easy road. 

As time has passed, what I’ve come to understand is that the challenges we face are consistently due to system-wide obstacles that prevent the use of  best-practices in including kids with disabilities. And by that I mean co-teaching, building lessons based on the principles of Universal Design for Learning, Collaborative planning and multi-tiered systems of support. 

Let me be really clear: Universally Oliver’s teachers have expressed a desire to have him in their class, they have a willingness to work with him and they want to see him succeed. They care and they are trying very hard but they need more support. They need training and they need time built into their days for collaborative planning and they need to have a vision for understanding that what they are doing in the classroom ties in with building a culture of belonging. How do I know this? Because I get emails that say things like:

“I use a lot of games in my classroom but I don’t know how to include Oliver in those activities. Do you have any ideas for games that would work with him?”

“A lot of my difficulty is because most of our assignments involve writing and reading through text to learn new skills; both of these take Oliver extra time. I’d love to discuss how to include him in the classroom activities.”

"I would like to involve him more in the social aspects of the class. Please let me know if you have any advice."

"I do a lot of lecturing in my class. We have a lot of material to cover and it’s hard for him to sit and listen to long blocks of lecturing so he asks to leave. I’d love to talk about how to help him so that he doesn’t miss so much of the class."

Well, the truth is, I can share ideas and resources with Oliver’s teachers but I’m not an educator. And besides I think you can see that it takes more than that.  It takes thoughtful planning, it takes collaboration across fields of expertise, it takes a vision and it takes a commitment to creating the kind of school community where there are real opportunities for meaningful inclusion.

I constantly wonder if sending Oliver to school is the best thing for him. He wants to be there, learning alongside his peers. But he has experienced a lot of failure in his life and putting him in a classroom and expecting him to be like everyone else and do the same things as everyone else means that he will fail. He is failing. Often and in very public ways. Not academically. Academically he manages As and Bs. But he spends all day trying to do the things that are the hardest for him-- sitting still, being quiet, filling in worksheets -- instead of playing to his strengths -- and there are many. And for what reward? All of the things that you and I loved about going to school just aren’t available to him. He isn’t really a part of any classroom or school experiences that make learning about more than the grades and assignments. 

Let me share one more example with you. At a progress meeting in November, some 12 weeks after school began, the resource teacher who works with Oliver excitedly described how she was able to pre-load some choices into Oliver’s communication device before class one day. She was able to do this because she happened to be in the class with another student that morning and so she knew what they were going to talk about. So when the teacher began asking questions, Oliver was able to raise his hand and, using his text-to-speech application, answer a question. When she finished sharing this story, which she did as a celebration, the classroom teacher added how all the other kids in the classroom turned around, surprised. “Huh, so that’s what that thing is for” she guessed they thought [Meaning his iPad].

That’s when it became clear to me that 12 weeks into the class, Oliver had not been able to share his thoughts, opinions, ideas or even answer a question. I think we can do better than this.
Inclusive education is about understanding that every child -- not just those with disabilities -- do better socially and academically when we create learning communities that don’t leave anyone out. Inclusion is about understanding that we can all learn from each other no matter what our skills and abilities.

I want to share just one more story with you, if I may. Last year, Oliver was taking 7th grade science class. It was very early in the year and the photographer from the newspaper was there to take some pictures. Oliver happened to be out sort of taking a lap around the school to regulate himself at the time. When the students realized that Oliver wasn’t there they insisted that they be allowed to go and look for him so that he could be photographed with the class. They wanted him in the picture. He belonged there.

It’s stories like this that make me want to keep trying for Oliver. Because the kids get it. They know when a child is being meaningfully included vs. just sitting at the back of the room trying to sit still and be quiet. They know that all means all and they want to find ways connect. They just need help from the adults in the room.


  1. Laurence3:04 PM

    hi Christine,
    I try to post before and I failt so sorry if you got two messages . I 'm very interesting by your posts about inclusion. Nico is like Oliver , they force us to raise montains and they are right( even if , often I told myself too that homeschooling full time is the best solution). School experience is the same for Nico : he hasn't time to type , nobody knows his level ( he is partialy mainstrained)but there is no way to exchange with teachers , so I'm very interesting by your vision, your questions,your solutions (for exemple " co-teaching, building lessons based on the principles of Universal Design for Learning, Collaborative planning and multi-tiered systems of support".). we have to invent solutions because typers are mainstrained not since a long time . I will love to exchange about inclusion and all expériences our kids live at school . Would you be agreed for a Facebook page about school expériences (not homeshooling) and non verbal typers or any kind of way to create "pragmatic" solutions. Months ago Nico had participated to a religious meeting : he had the subject to think about and as there was a lot of people , he had time to type and could be part of the meeting.So I 'm sure if he has the best opportunities at school , he will be more in action.
    thank you very much for your post (sorry for my bad English) , I had been thinking about that everyday but can 't exchange with others parents here in France :(.
    Maybe our two guys can send each other email ( Henny's idea :))
    your blog is such a source of inspiration , love the way you write :)

  2. Hi Laurence, I think we (our boys) are not alone in this. One of the very hardest things, I think, is to be alone -- me in my advocacy work here in my community and Oliver at school. There are no other typers in our community and even though we have a lot of support, it is still system change that we are talking about and that doesn't come easily or quickly. In the meantime it is hard, hard, hard. I often get frustrated that I see only examples of the good things on social media and in the news -- but for every story of success there are many stories of struggles that just don't get told. ... But yes, I would love for Nico and Oliver to exchange e-mails if they want. Also maybe facetime? Something else? And a facebook group sounds great. I could use the support. Thanks so much for commenting -- I wish my French was half as good as your English!!

  3. Thanks for this post and for your advocacy. The focus on belonging is so important for all kids. Relationship based learning . . . anyway, I thought what you shared was fantastic and I hope it was appreciated by your audience.

    1. Thank you! Yes: Belonging is at the very heart of it and maybe more important than all the rest. Also: my audience WAS appreciative. I feel very fortunate and very optimistic.