Literally Every 5th Grader

I don’t know exactly when the bulletin board went up, but it was probably in January or February. I didn’t have a chance to go in to Jack’s school very often, so I wasn’t aware of it at all until a friend of mine—the mom of one of Jack’s classmates—posted about it on Facebook in March.

See, this was a bulletin board about the “Superstars” of Jack’s school—the class of 2014.

Photo of a bulletin board covered in yellow paper with a border of paper flowers. Letters spelling out "Our Superstars" and "Class of 2014" are stapled to the board along with photos of the school's fifth graders. I've blurred out the photos for privacy reasons.

I took this photo last Friday, months after it was originally put up.

Jack is part of the class of 2014, so I imagine he was excited to be called a superstar. Except…well, except for the fact that this bulletin board—which was posted within 30 feet of his classroom, insuring that he saw it every single day—included photos of all the fifth graders except for the three fifth graders in Jack’s Asperger’s classroom.

Evidently if you are in an autism classroom, you aren’t a superstar at Sligo Creek Elementary School.

My friend, who is the hero of this story, wrote on Facebook about how she saw this bulletin board often, as she visited the class regularly.

“Each visit is the same: I approach the poster with a mixture of dread and anger at what I know I will see, yet again. And then I turn around, go to the office, and politely inform the secretary that the poster that my daughter and her classmates walk past every day *still* does not include them, and maybe this whole thing started out as just an oversight but it’s been weeks now and could someone *please* add our children’s pictures to the poster so they don’t have to be reminded every single day, as they walk to their special education classroom, that their school’s administration has overlooked them and their achievements?”

She did this for weeks. She would see that the poster didn’t include our kids and she would tell the secretary and she would be ignored. When she finally told the secretary that she was going to fix the poster herself by adding a photo of our kids, she was told that she couldn’t do that because it would be defacing school property.

As you might imagine, that didn’t go over well with my friend. She made it clear in no uncertain terms that if the kids from the autism program weren’t added to the poster by the administration, she would do it herself, and if someone had a problem with that, well, that problem would become public fast.

It was early March when my friend’s daughter reported that the principal had come to the classroom to take photos of the three fifth grade students in Jack’s class.

Except…

Except again.

The photos still didn’t go up. It was mid-March when those three fifth grade students attended a birthday party together. My friend put our kids together and took a photo. On March 18th [date corrected from earlier version], she took that photo and four thumbtacks to the school and she DEFACED THAT BULLETIN BOARD.

Photo of Jack and his two 5th-grade classmatess. I've put bright colored circles over their faces, with smiley faces drawn on them because they're not my kids and I don't want to post their photos here.

Their real faces are even cuter.

*standing ovation*

This was nine weeks after she first mentioned this to the secretary. NINE WEEKS.

At some point the school went ahead and posted individual photos of each of the three fifth graders in the autism classroom, but it wasn’t done until my friend had spoken up multiple times over the course of weeks and then posted her own photo.

Photo of Jack stapled to the yellow bulletin board next to a white paper star.

I think this photo adds a lot to the superstar collage.

As far as I know, my friend and her daughter haven’t gotten an apology from the principal. I know that Jack and I sure haven’t.

I really like Jack’s program. He has done really well there. He has gone from being miserable about school and himself to being happy and full of self esteem. He has a safe place to be when school gets too overwhelming, but he spends much of his day in inclusion classes. His teachers are wonderful. His paras have been good to him. His IEP team is delightful. The other kids in his class are phenomenal. I’m very happy that he is in this program. He is very happy that he is in this program.

But damn.

I wish that my school district was able to serve my kid in his home school in an inclusion classroom. But they couldn’t. They couldn’t or wouldn’t give him the support he needed, so we found another option, one that seemed to work. The thing is, segregation of students has limitations. Even though my kid has been well served in his program, he is obviously seen as less than in the eyes of the administration. These kids do not seem to be the principal’s priority.

If you read here, I’m sure you know why it matters that all kids are included in all parts of school life. It seems so obvious to me, yet it is clearly not obvious to the people who kept moving “post photos from the Asperger’s class” to the bottom of their to-do list.

Every child has an intrinsic worth. Every child has a right to belong. Every child has a right to be treated with respect. Every child has a right to be included, not just by peers and teachers, but by the people who lead the school and set the tone for everyone in the building.

I was furious when I heard about this bulletin board from my friend. I am still furious as I write this. It breaks my heart that people who work with students with disabilities day in and day out still forget that they matter and that they have thoughts and feelings and desires and complex inner lives.

If you doubt that, check out this essay that Jack brought home last week about 5th grade photo day. The 5th grade all wore their special “class of 2014” shirts on the same day and sat for a photo of the whole grade. Jack remembered all by himself what day he was to wear the shirt and excitedly sat for the photo.

Photo of a small section of Jack's essay titled "2014 School Picture." The full text is below.

Jack wrote about the day. Full text is below.

“2014 School Picture: On June 3rd, I was so excited for the 5th grade picture. I couldn’t wait for it. All the 5th grade, LITERALLY ALL OF THEM, were in the picture. It was so awesome, I could not wait for it. I was in the 3rd row closest to the camera, very close to the flash, so it could get a good angle of me. I couldn’t be forgotten in Sligo Creek Elementary pictures with me in one, especially this one and the graduating class of 2014. [Classmate one] and [classmate two] were close to me, and they were good friends. Lots of people I knew were there, some were close to me and some weren’t. Everyone else seemed to be prepared, as I was thoroughly prepared. That was the best day of my life!”

Read that and tell me that it doesn’t matter if Jack’s photo wasn’t on the superstar board. Read that and tell me that putting my kid’s photo up was “defacing” the bulletin board. Read that and tell me that the principal was doing her best by my kid and those in his class. Read that and tell me that Jack doesn’t understand inclusion.

“I couldn’t be forgotten.”

“All the 5th grade, LITERALLY ALL OF THEM, were in the picture.”

“That was the best day of my life!”

In terms of injustice toward disabled people, this is probably not that big a deal. But to my kid and to the kids in his class, it is a huge deal. Remember that. Even the little things matter.

On The Dialogues and Being an Ally

Some of you may have read The Thinking Person’s Guide to Autism’s Dialogue series. These posts (and the conversations that follow in the comments) are a series of discussions as to the roles of parent advocates and autistic self-advocates in the autism community and in the greater developmental disabilities rights movement.

The series is fascinating and well worth your time to read—although, seriously? Set aside a good chunk of time. And read the comments as well.

I interviewed some people and wrote about it at my Autism Unexpected column. 

While I was reading and thinking for that column, I ended up with pages of notes that I’d written to myself containing my myriad of feelings about the topic. Autism Unexpected isn’t the place for my personal thoughts on this issue, but guess what? I have a BLOG! That is totally the place for my personal thoughts. So here you go.

*****

When I first started to look at autism blogs online, back  in 2007 when I started to suspect that Jack was autistic, I ended up at a place called Autism Hub that collected blogs from both parents of children with autism and autistic people themselves. The conversations and posts I read there were full of information and wisdom, but also arguments and conflict, with writers struggling to have their voices heard and understood.

Honestly, having that be my first entry into the autism community was scary for me. I was looking at my 3-year-old child and coming to terms with the fact that his life was going to harder for him than I had hoped it would be. But still, I stayed up at night thinking, not of Jack’s new probable diagnosis, but the fracture in the community we were joining and how I should think about autism. Seriously, walking into that conversation without prior knowledge was confusing and uncomfortable.

That said, when I look back, I am extremely grateful that my first exposure to the world of autism came from not just parents, but people with autism themselves. That exposure, that lesson, that knowledge that, hey, it’s okay to be autistic, was crucial to my understanding that my autistic son is just as perfect as any other child. That exposure introduced me to the concept of neurodiversity long before I would have heard of it from parents alone.

See? Perfect. Ish.

That exposure helped me realize that I didn’t need to grieve the fact that my son is autistic, but rather to understand that he is just on a different path than I’d expected. I don’t particularly remember feelings of loss when I became aware that Jack was autistic. For me, it wasn’t about mourning the child he was supposed to be, because he was always supposed to be who he is. It was a tough road to get to true acceptance where I am now, but reading adult autistic experiences made that road shorter than it could have been. And that can only be good for both Jack and I.

This is not to say that reading the experiences of parents wasn’t meaningful to me. It was and it continues to be. Other parents have very much made my path easier and made my journey infinitely better. I don’t look down on parents who grieve loss or feel different than I do. I feel that every person has the right to their own feelings, but I will advocate for what I think is right for my child—and that is teaching him to grow up into a proud autistic adult.

I hope that when he is an adult that people will listen to him and his experiences. And if I expect other people to listen to him, I should put my efforts into getting people to listen to today’s autistic self-advocates.

This conversation has me not only thinking about the greater issue here, but also where I fall on that spectrum between parent advocate and self-advocate. I have wondered for a long time if I fall on the autism spectrum. At the very least, I do not consider myself neurotypical. I could go into all the reasons why and why not, but that is probably not interesting to anyone but me. Let’s just say that reading books or blogs about autism is very much a “yep, me too” kind of experience.

Or, as my friend Jess says, “Cats don’t have dogs.”

Regardless, as a diagnosis or self-diagnosis is not in my future, I do not claim a space on the self-advocate bench.

As a parent advocate, the conversation taking place has been a little uncomfortable for me. It is all so complicated and made up of individual voices and, honestly, my head feels a little fuzzy sometimes when I’m trying to digest it all.

The crux of the conflict here is between autistic advocates, who say that this is their movement, and parent advocates, who have a hard time hearing that. Just as women need to lead their movement and African-Americans need to lead their movement, autistics need to lead their movement.

But then there are some parents who want to lead, who have spent the whole of their children’s lives trying to help them, and living for them and doing everything for their autistic children that they can possibly do—and, quite honestly, feeling dismissed by most of society while they do it.

But these parents are now hearing that what society does to autism parents? Well, we’re kind of doing it to adult autistics. We listen to what they say, but we don’t hear it. We nod when they talk, but then think we know what is better for them. We work so hard for our kids and then when we are told that it’s not really appropriate for us to lead the movement, but rather to be an ally, it hurts.

I feel that most parent advocates want to hear autistic advocate voices, but that it can be hard to let someone else take the microphone when we feel so passionately about helping our children. It can be hard to see that maybe someone else might be better at pushing the disability rights movement forward than us, people without disabilities.

This doesn’t mean that we stop advocating. Absolutely not. But we need to accept that the true stakeholders in the movement are not the parents, but the people with disabilities themselves. (This also doesn’t discount the fact that there are autism parent issues, and we’re definitely the stakeholders there.)

I know that when I get comments here, or other places that I write, from autistic individuals, they carry a tremendous amount of weight with me. The give me hope and understanding. If they feel respected by my voice, hopefully that means that Jack would also feel respected by my voice. I also see that many of these adult autistics are fighting battles so that my son won’t have to when he is their age. How can we ignore these folks? How can we not use our platforms to give them platforms?

As goodfountain commented on one of the Dialogues posts: “It’s interesting that I read language like ‘disabled adults should have a voice’—to me it should be that disabled adults ARE the voice.”

The Dialogues have made me look at my own behavior, what I’ve written about, who I’ve asked for quotes when I interview people, and how I perceive my own role in this advocacy movement. I’m sure I will make all kinds of missteps (because I’m kind of a jerkapotamus) as I try to proceed as a parent advocate/ally, but I promise to try.

One of the best comments I ever got on a post was one that said that I sounded like “a natural born ally.” Do I still want to fight in the autism rights movement? Hell, yes I do. But if I can’t be in the army, I can still be a kick-ass ally.

*****

If you are interested in this, please do check out my story on Autism Unexpected, but more importantly, read the Dialogues and the many autistic and parent voices speaking there. I think this issue is crucial to our community and will only become more important.

At the COPAA…COPAAcabana…

Last weekend I attended the COPAA (The Council of Parent Attorneys and Advocates) annual conference in downtown DC. They are a national organization supporting special education rights and advocacy. Their website is a wealth of information and resources, including listings of attorneys and advocates.

I have all kinds of things to think about after attending this conference. I’ll go into some of those in a minute. First, I have to share with you that I got to meet Ange from Tis My Life. She came out to the conference to spread some information and awareness about restraints and seclusion rooms.

Isn’t she pretty? And righteous!

I was really happy to have a buddy to hang out with, but I am extra glad that it was Ange, because she turned out to be a really cool, fun, smart woman. I kinda miss her already.

I also ran into my educational consultant, who attended one day of the conference. It was nice to spend some time with her without having to worry about what was going to happen with Jack.

It was an intense and tiring weekend for me. I came home at the end of each day and just crashed. Something about having to pay so much attention to such a complicated subject did me in. I have a whole bunch of things to look up and research now. I also have a lot of acronyms to type into the internet to see exactly what the hell these people were talking about.

I did come away with some very useful ideas, lessons, and information. Some of it will help me in the long run with building an advocacy practice. Some of it will help me this month, when we go into Jack’s annual review meeting.

That meeting was originally supposed to be tomorrow, but because the special education teacher is sick, it has been postponed a couple of weeks. I’m happy to hear that actually, because it gives me some time to look at the draft IEP we just got with new eyes.

I spent a big chunk of time there feeling really underqualified, intimidated, and overwhelmed. This is mostly due to me and my insecurities—and the fact that both as a parent dealing with special education and as someone going into advocacy, I am brand new. There is so much to learn, and so many specifics to absorb. And there is a certain attitude of know-it-all-ness that I have yet to perfect.

The conference made me little depressed also. There are so many bad things that happen in special education. I get that these kids are harder and that sometimes they seem weird or need a lot of extra help, but it is just so hard to hear stories about educators that clearly do not care about these children. By no means do I think all or even most educators are like that, but some seem to be, and it is mind numbingly horrifying.

Another thing I felt though, was gratitude. I felt gratitude that I live in a school district that, yes, has many problems, but that isn’t as flat out horrible as some of them out there. I felt gratitude that my children attend a school where my hiring a lawyer and an educational consultant didn’t turn the staff against me. I felt gratitude that my IEP team treats me and my family with respect.

Granted, I’m now terrified of Jack going to high school after hearing some of the stories, but we have some time before he has to go there, and I’m relatively sure that they’ll have found a way to stop time before then. Oy.

I also spent a substantial amount of time annoyed at this one woman who just would…not…shut…up. At the ending keynote, the executive director of the organization literally tried to pry the microphone out of this woman’s hands, and she wouldn’t give it up. In one of the sessions, I was sitting next to my educational consultant who couldn’t hack it anymore and finally asked the speaker to stop answering her questions and move on. This was met with surreptitious thumbs-upping and quiet kudos from the back rows.

I have to say, I am really glad I went. It was good to be around people that work in support of special education. It felt nice to see speakers who spend their lives working to help children like mine. There are people out there trying hard. There is so much being done, but it’s clearly not enough.

That might be the biggest lesson that I took from the conference: There is still so much to be done.