Friday, May 06, 2016

Interesting This Week

Wow, the Internet is a cool place, isn't it? I love how it allows me to make connections with people and ideas. It's like magic a little bit and shapes my thinking in so many ways. It's like the best library you ever visited only better because you get to check out people and perspectives. Here's some of what I found interesting this week:

Moxie: Let Down Syndrome Define You -- by Meriah Nichols

The way that your extra chromosome expresses itself is a part of what makes you, you.

It’s more than the physical pieces – your lovely eyes, crinkly ears, petite size – it’s the way your brain works. It’s a part of how you receive and process information. It’s the way you see and interact with your world.

Down syndrome is like the feet upon which you stand – it’s a part of you. It can carry you forward, it can move you in new directions if you allow it.

After a Big Seizure and Before Dressing -- by Elizabeth Aquino

It's difficult to defend the integrity of another person who can't do it for herself. It wears on the soul. The wearing, though, is like clothes. A garment to mask vulnerability. The wearing is from the outside, not her. It's from you. We shouldn't have to defend or even wear the clothes.

Under the Table - The Importance of Presuming Competence | Shelley Moore | TEDxLangleyED

Watch this. I mean it. Really, this will be the best 15 minutes of your day. I've only ever sent two fan letters in my life and one of the was to Shelley. I've watched it 3 times already and now that I'm thinking about it, I'm going to go watch it again. See you there!

The Hackensaw Boys on NPR's Weekend Edition

That other fan letter I wrote? It was to these guys, a band with local ties, bringing music and dancing to the residents of this little green house for years. The music of the Hackensaw Boys was the first that made Oliver get up and dance so I wrote and told them of the JOY and even now, so many years later, when I see them Ferd will ask: "How's Oliver?" I love them so! 

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.

Wednesday, May 04, 2016

This Story Brought To You By Hope

I told you recently that I am advocating for our school district to develop a model for inclusive education that will help Oliver, and other students in our community, to thrive both in and out of the classroom. Sending my boy off to school each day, knowing that things are not best-case scenario, has left me feeling powerless. And as a mother, that is the last thing you want to feel. Advocating is something I can do. And so it is what I do. That is, it's what I do when I'm not worrying (which is a real strength of mine). I'll be honest with you: this year has been hard on me, on our family, and most especially on Oliver, who is the real hero of this story. He is the hero because no matter how difficult his days are at school, he is always ready to go the next day and try again. 

I have wondered why my boy is so willing to keep trying when I feel certain I would give up if the choice were mine. During the worst of it this winter, I found myself asking him daily if a return to homeschooling would be a better option. I couldn't understand what he was getting out of going to school and he could never really articulate an answer that made much sense -- just that he wanted to go. Partly I chalked it up to his nature: he comes by his stubbornness honestly. But also to his gentle, accepting way (a gift from the other, more relaxed half of his DNA). But I'm also reminded of something I learned, so many years ago, working with refugees in Thailand. I spent my off hours interviewing my students who would soon be resettled in the United States. I was teaching cultural orientation to the elderly, 55 and over, which makes me laugh for several reasons now, thankyouverymuch. They were primarily Hmong, most of them didn't read or write, they were used to cooking over a fire and had a rich tradition of hunting and gathering. They smiled and laughed. A lot. (Frequently at me). 

It was all fun and games till someone pulled out a camera -- then
the joke was on the lone, smiling American.
Even then, (my calendar says 20 some years ago) I was interested in understanding the stories we tell ourselves. How these stories influence who we are and who we will become, how we knit together our understanding of where our feet touch the earth right now, in this moment, with our expectations for where those same feet will carry us down some yellow brick road of the magical future.The marriage between the real and the ideal. And those refugees who were kind enough to share their stories and their dreams with me? They knew a lot about what is real. They knew about war and fear, frustration and boredom. They knew about what it was like to be caught in a system where you can't stay and you can't go back. And I think they also knew how difficult life in this far away country was going to be. Maybe they knew about the very high rates of depression and suicide of those who went before them. Surely they knew that an entirely new way of life awaited them. A life where chicken parts are sold wrapped in sanitized plastic wrappers so you can't even smell it or rely on your own senses to know what is what!  And yet, despite the odds being so firmly stacked against them, their stories always made room for the chance at a happy ending.They found a way to balance their very real struggles and fears with the only thing they really had . ... Hope. This was one of the great surprises in my life -- that even amidst the most difficult circumstances, there was joy, there was life and there was Hope.

For obvious reasons, this isn't much of an analogy. But years ago, when I was in the camps as a teacher, I quickly (quickly) found that most of the lessons would be mine to learn. I've never been a very good student, often taking years to learn basic truths, so maybe it isn't such a surprise to find that Oliver is now teaching me a very similar lesson and that it's one that I still have to learn. 

Sometimes in this life, you can't go back, and staying where you are won't work. The only choice that makes any sense at all is moving forward, holding tightly to hope, and telling your story in a way that leaves room for a happy ending.

Wednesday, April 27, 2016

Holding Space

Today, tonight, I am holding space for my dear friend Gretchen.

I've only met Gretchen, and her sons, Tommy and Henry, once. But I've known her and her kids since the early days of this blog. And I know Gretchen on a heart level. I know her because we are Sisters.  And friends? My sister Gretchen is doing the hardest work a mother can ever do. Gretchen is shepherding her son through this life and onto the next. We are not supposed to out live our children. There is no way to ever make it okay. All I can do is hold space for my dear friend and her family.

If you want to know more about our beloved Henry and his dear mother -- my friend, my sister -- please click here and read the beautiful words of Mom-NOS.

Tuesday, April 26, 2016

What I am. ... What I'm not

This week, I am. ...
  • promising to make time for my banjo
  • bewitched by birds
  • loving alliteration
  • saying I love you 
  • wrapping up loose ends
  • counting down school days (31)
  • plotting another adventure
  • fond of root vegetables, roasted, with rosemary

What I'm not is:
  • getting the hang of the Crawdad Song
  • comparing myself to others
  • as patient as I should be 
  • as resilient as I could be
  • on top of the cleaning
  • hearing back from the plumber
  • quite convinced we need a dog
  • fond of Heidegger 

Monday, April 25, 2016

On The Subject of Secrets

In the interest of inhabiting that braver me that I imagine, I share with you an excerpt from a work-in-progress, tentatively titled Surface Tension:

Are you the sort of person uncomfortable with secrets?  Well then there's a difference between you and me right there. I've got a lot of secrets and so, in a self-preservation kind of way, I'm comfortable with them. But just let me be clear: I don't keep things to myself because I'm particularly secretive, it's just that the kind of things I'm talking about rarely come up in conversation. I spend a lot of time in polite company. And I learned early on that it's more than secrets that make people uncomfortable. Sometimes it's truth. So to save everyone I just keep a lot of things to myself.

As I've said before, so much of our truth comes down to the stories we tell ourselves. This week I marked the day, three years ago, of my mother's death. Her leaving released me from my long held desire to protect her from having to bear the weight of the damage done. It was better to just pretend that we had all escaped, but in truth, that just made the reckoning of it even more inescapable. For me, anyway. And at this point, I'm the only one left.

Maybe my rememberings aren't exactly correct. It's difficult to look at the situation from outside of the girl I was. To get another perspective on those years when I was mute, you'd have to ask my mother but she's dead and anyway I don't think she noticed much. I don't think anyone else did either, we were all only trying to get by. And if you don't count the people living in the house, that leaves exactly no one who knew what was going on or would remember. The only guests I ever remember having at 737 were loud Uncle Auggie and his wife, Sissy. It was just that once when we all ate a meal together on the good plates in the dining room and my father leaned over and said about the roast beef: Put some salt on it, it'll taste better.  Eating was another thing I didn't do much of, but it was the only advice I ever got from him so I took it and still remember the feeling of choking back that dry, salty meat. I would have liked to say something to them, those large people so strangely occupying a silent house where no one noticed when you didn't speak and might have even preferred it that way.  

Sunday, April 24, 2016

Finding Meaning on the Internet and Other Stories We Tell Ourselves

Maybe you guessed that I'm making an effort to sit down and write more. It's hard. I tell myself I don't have the time. That I don't have anything to say to anyone anymore. That I'm not a real writer, it doesn't matter if I make the effort today or not. But I peel back the layers and there it is, the tender pink of afraid. Of self-doubt. This business of making yourself known is scary. Almost no one that I can reach out and touch in my everyday life knows about this little space here. Do you find that strange? Chalk it up to another secret that I keep. To change that, to truly own my words, is terrifying.

Yet. ..  writing in this space has helped me in ways beyond measure. Because of this space, I've connected with a powerful group of women who have carried me through difficult times, women I consider sisters. And I've connected with people who told me that I made a difference in their lives, people whom I might never meet but who find their way here and tell me: Thank you, I don't feel so alone, so afraid, anymore. And that right there? It means something. Maybe it's the only thing that means anything.

So this week, a week when I found myself flirting with this space a little more, I suddenly noticed an uptick in visitors, which made me both terrified and curious. How is it that suddenly The Internet knew I was back? A little sleuthing took me here, where I was surprised to find myself on a list of things to read this week -- which was really terrifying because those other people on the list? They are real writers. But I'm on that list, too, so maybe this is an invitation to think of myself more bravely. To tell myself a different story.

Then, a little more clicking led me to the blog-owner's TED talk, which you can watch here, and is all about Self-Doubt and The Power of the Personal Narrative. ... so! Is The Internet sending me a message? The Universe? But I don't believe in signs, only in our own clumsy meaning-making, and so that's what I'm going to set out to do.