Tuesday, October 11, 2016

The Mountains We Climb. Or, How to Be a Better Doctor

Dear Doctor,

I need a word with you. I want to tell you something about our lives, something about living with autism that isn't in your physicians reference books. I want to tell you how you can be the doctor we need you to be without ever taking out your prescription pad.

I want to tell you a little bit about the mountains that we climb, my boy and I.

We've been coming to see you since my boy was a newborn and you've known us all that time. Fourteen years. Two weeks ago my son needed a form signed so that he could participate in a swimming class and your receptionist pointed out that he hadn't been there for a physical in almost two years so we took the first appointment available.

Now, you know my boy is autistic and that he doesn't speak much, but we've been in your office enough so that you should also know that he has lots of ways of making himself known. But even if you didn't, I want to help you understand how to interact with a person who struggles with communication.

When we sat in the exam room with you, my boy was right next to you and I was further away, on the other side of him. You started off asking general, friendly questions, but rather than address my boy -- who is fourteen years old, after all -- you looked past him and spoke past him and asked me instead. Each time I pointedly turned towards Oliver and redirected the question to him.

"How's it going?" you asked me.

"How's it going, Oliver?" I asked.

"Good." he replied.

"So, anything giving you any trouble?" you asked me.

"Are you having trouble with anything, Oliver?" I repeated.

"No." he replied.

"So, he's in school, I assume?" you asked.

"Oliver, are you in school?"

"Yes." he said.

Do you see how that works? It's not as hard as you might think. Look at him. Talk to him. Ask him your questions and give him the chance to reply. Treat him like more than an object that is in the way of the conversation you want to have with me about him. He's your patient. If he needs help, or if you need help, I can offer support. But when you look past him and talk past him, refer to him as though he weren't sitting right there, you deny his person-hood and add to our burdens. Because in this situation I have two choices: I either find some gentle or not-so-gentle way to call you out for treating him like a non-person or I play along, get along, and contribute to the othering of my son. One choice exhausts me and the other wounds at least two of us.

Later in the appointment you looked past him again and asked me if my boy was ever depressed or if he had a good circle of friends and I you looked at you and wanted to laugh. Bitterly. "Both are about like you might expect when he's so often not treated like a person." You looked confused, my husband looked wary (he knows how I can get), and I wondered what you scribbled in your notes and if it contained the words 'passive aggressive'. 

Having autism is sometimes hard, Doctor. Not being able to communicate in the way the world expects is harder still. Supporting a person with both of these challenges can also be a struggle and maybe you've guessed by now that the hardest part can sometimes be other people. But don't take it too personally, you are just one in a long line of doctors who have treated my boy this way. It happens with other people, too, it's just harder to take when it comes from someone in the healing profession. Because we need allies. We need doctors who will help us troubleshoot often difficult issues and to be of service we need you to really see the person with the issues.

So Doctor, I want to share something with you that I hope you'll remember. Day after day my boy and I experience a thousand little episodes like the one I just described. In small and sometimes subtle ways my boy is told over and over and over again that he is different and therefore less of a person than everyone else. And if you put all the hard things about having autism in a pile and then made another pile out of the thousands of episodes like the one I'm writing to you about today, you would see that the mountain of advocacy that other people make us climb is the more exhausting of the two.

We take allies wherever we can find them, Doctor, and hope in the future you can be one. In the meantime, may all your mountains be small ones. We'll see you on the road to the top!

Very sincerely,

Sunday, October 09, 2016

(Not) Welcomed, (Not) Included in Virginia

This year, like many other mothers, I attended an Open House at my son's school before the first day of classes. Even though my son was entering 6th grade at our local middle school, this was a novel thing for me to do because until this year he had been home schooled. I approached the evening with some trepidation, not quite sure what to expect. Another boy in our neighborhood, one year older, volunteered to go with us. He said he would show us around, help us figure out how to navigate from class to class, help us find my son's locker, and introduce him to the teachers. I gratefully accepted.

When we arrived at the school there was a little bit of mix-up with my son's schedule that was straightened out in the guidance office. While we waited, a very friendly counselor asked my son if he had any questions and made a real effort to help him feel at ease. She talked to him about the cross-country program and helped him think about which instrument he might like to play in the band. She told him about the school play and suggested he either try out for a part or help behind the scenes if he was interested.

Later, I followed my son and our neighbor through the building and watched as teachers and administrators stood in the hall greeting kids by name, giving them high-fives and asking about their summers. There was a jovial, welcoming energy throughout the school and I could see how it felt like a little community. Kids who hadn't seen each other all summer gathered in small groups catching up and looking at their schedules to find out who would be in which classes together. Parents and teachers greeted each other warmly and talked about the year ahead. Without a doubt, I knew my son would be welcomed here. I had worried about how he would manage in a classroom environment after having been unschooled for so long, but the teachers seemed engaging and eager for my son to join their classrooms. They told me about all the fun activities they had in store for their students. They spoke of field trips. They set my mind at ease when they described the wide diversity of students in their classes which include a large number of immigrants and refugees in our area. I began to see how my son might fit in and thrive here. I could see how he would be a part of something, how he would begin to forge the relationships that would imbue the next years of his life with richness and texture.

You might think that I left that event at the school feeling relieved and excited. And, in a small way, I did. But the greater emotions were sadness and grief.

You see, this was not my first experience in this school. My older child, who has a disability, had attended this school for nearly three years. And during that time no one had ever asked him if he would like to join the band or what instrument he might like to play. No one ever suggested that he might participate in an after school activity. They never asked if he might enjoy helping with a play or, for that matter, even attending one. He didn't have a locker. He never once stood in a group of his peers in the hallway. There were no field trips or school dances unless I consented to go along as his chaperone.

Every interaction we had with teachers took place inside a conference room where faces were veiled with trepidation, where all the things my son couldn't do were considered barriers to even the most basic participation.

Over the three years in which my son was enrolled in this very same school, I spent countless hours meeting with teachers and administrators advocating on his behalf. I spent evenings and weekends adapting and modifying coursework. I bought apps that would allow him to participate in algebra and Spanish, loaded them onto his communication device, and taught his teachers how to use them. I lobbied at the district level for more teacher training so that they could get the support they needed.  I participated in our division's new Strategic Planning Group for Inclusive Education.

I spent so much time advocating for my son and other children with disabilities that one principal joked that he thought I worked for the school district.

After three years at this school my son graduated from eighth grade, ready to move on to the high school, having only completed three classes. And still, I counted our time there as a success. I believed that the lessons his team had learned about the supports needed to help him be successful in the general education classroom were the building blocks for a more rigorous education.

It wasn't until my younger son started school that I realized how dismally we had all failed.

I knew, of course, that inclusion was about more than being able to participate in the general education classroom, but until I walked those same hallways with my son who does not have a disability, I didn't realize how much my other child had been denied a sense of belonging.  I didn't realize how much he had missed out on by not walking the same hallways with his peers, how few people knew his name or anything about him. Advocating for extracurricular activities and programs felt like just one more hurdle to overcome and I didn't realize what I let go of when I thought just being allowed to attend a science or math class was enough. The promise of relationships and experiences, of a community of support, wasn't just denied to my son with a disability, it was denied to our whole family.

I had no idea how much we were excluded until my child without a disability was welcomed so openly.

I had no idea how much we were on the outside until I saw what it looked like from the inside.

My oldest son is now enrolled at the High School, although 8 weeks into the school year he has yet to attend a single class.  He missed out on Diversity Day when students and staff wore the clothing representing the many culture represented at the school. We got the pictures in an email. He didn't get the chance to go to the homecoming dance or participate in any of the related school activities. He didn't get his picture taken for the yearbook.

Except for a few administrators, nobody at the school knows his name or that he should be in school and isn't. He isn't missed.

It's difficult to be missed, after all, when you were never included in the first place.  And that is a grievous failure for us all.

Friday, June 24, 2016

Never mind

Never mind that it's been raining buckets and the enormous pile of mulch I had delivered has moved in rivers through my yard like brown sludge. Never mind that I have a fantastically sour and sarcastic 11 year old masquerading as the boy I used to call Sami. Never mind that dark clouds of nationalism and xenophopia seem to be spreading, casting long, dark shadows that made JK Rowling tweet: I don't think I've ever wanted magic more. Me, too. Me, too. And maybe she's on to something. Maybe a bit of magical thinking, fingers in ears, la, la, la and a day (at least) of self-sanctioned media abstinence is called for.

Sometimes it all feels like just too much.

While I wait for the proverbial, metaphorical and actual clouds to part, here are some things that make me happy:

 Here's where you'll find me every morning, very early, my banjo on my lap, a tune in my head and coffee at my fingertips. I watch the sun come up, add rhythm to the birds tender morning songs and anchor myself for the day with a few minutes of solitude.

 I love this boy. All the things about him that make me crazy are the things that I will admire in him when he is an adult. This is the story I tell myself as I exhale deeply a dozen times a day.

 And this guy? He makes my heart sing.

Happy Friday, everyone!

Wednesday, June 15, 2016


Procrastinating about this blog is interrupted by vacation  - as usual this means camping, biking and swimming. Ah, summer! We've missed you.

And then, just like that, we are are home again and I'm making lists. Lists of chores in the wake of the camping debris dislodged from the car and dumped in the hallway last night. Lists of projects started and left half finished in the wake of the terrible, no good school year. Lists of things I want to do with my kiddos this summer. And finally, always finally, things I want to accomplish for myself. This comes last but at least it's there. One can dream. 

Wednesday, June 01, 2016

Memories. Or, Waylaid and Forgetful in IEP Season

I started this post weeks ago, before I got waylaid by the sticky emotional muck of IEP season. Maybe you know something about that. Since then I've been yearning to get back here, to this space, to the habit and practice of writing.

When I sat here last looking at this blank space, on May 7th, I had an idea about something I wanted to say and got started with a few sentences about the stuff of memories. But now, ironically, I can't for the life of me remember what it was I meant to say. So to save this from going into the unfinished draft pile, I'll just commit the beginning here and call it the end.

To get to whatever it was I was getting to, I had to begin by talking about RT and so I wrote:
It occurs to me that someone new here might not know that RT -- that is: Resident Teenager -- is the oldest member of our kid brigade. And in fact, RT is neither Resident or Teenager any longer. He is all the way into adulthood. Graduated from college. Making a life away from us in New York City. When I think about wanting to hold on to these childhood moments that I'm smack in the middle of with the other kids, thinking of RT reminds me that it's no joke: his childhood is a big blur to me.
Maybe it's different for other people, but I somehow didn't manage to collect a whole catalog of memories from his childhood the way I feel I should have. You know how many of those long, tedious days that you live through as a parent? The ones that feel just endless? Endless strings of endless days, sometimes. You imagine that they will be etched into your brain for the rest of your life. But they won't. They'll pass and be gone. Oh sure, if you really think about it, you might remember the (many) repeated attempts that he made to educate you on the finer points of Pokemon, but you won't really be able to picture the ragged nails on slender fingers holding a card out for you to admire or how bright his dark ebony eyes shone when he did. The things we notice about our kids that make us suck in our breath, jolted by an electric kind of love, aren't the sort of things captured in a photograph. They are as ephemeral as the slow smile that crosses a boy's face, a shadow of his father, as he spins a tall tale. As tender as the pink of new skin on a scabby knee.

That's all she wrote, friends. I wish I knew where I was going with it but as I head into another IEP meeting tomorrow maybe it's enough to remember that this, too, shall pass and that these are the days I will miss, all rolled into one.

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.