Jack’s Debut

Jack’s school play was this past weekend. After hours and hours and weeks of rehearsals, he performed Friday night and Saturday afternoon and evening. He was triumphant and delightful and hilarious and wonderful and totally Jack.

It’s not easy to cram all of that into a small role that mostly involves standing in one spot and not speaking, but he totally did it.

However, the experience as a whole wasn’t perfect. In fact, I just wrote and deleted seven long paragraphs about the issues I have with the way everything went down for Jack. What it boils down to is that often inclusion isn’t what we want it to be, especially in after-school activities. But then I decided that I didn’t want this post to be about all of that. I want it to be about my awesome kid.

It would be easy to look at his struggles and feel as if he was less than successful, but instead I choose to look at how tremendously kickass my kid is.

Without even telling me, he created a monologue and auditioned for a play. He didn’t know anyone in the cast and he sat through hour after hour of rehearsal where he was required to mostly sit on a gym floor and watch other people rehearse. He was brave enough to get up on a stage to perform in front of a crowd. He was willing to do all of this for a very small role. He did all of this while autistic. Any way you look at it, Jack did a great job.

He is so brave. I don’t think he is even aware of how brave he is. I tried to let him know that by buying a “shout out” in the play program.

Photo of an advertisement in the play program that says, "Congratulations, Jack! You are braver than you know. Team [Stimey] loves you!"

I hope he really understands this as truth.

Every performance that I watched—and I watched all three of them—left me grinning from ear to ear. I love my kid so much. And I am so damn proud of him.

Whenever I asked him if he’d enjoyed being in the play, he said he did. Honestly, that’s all that matters to me.

Photo of four kids dressed as security guards with linked, raised arms taking their bow on stage.

You deserved your applause, Jack. Every bit of it.

 

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.

The Inclusion Problem

I believe in inclusion. I think that when it is done right, putting kids with special needs in general education classrooms is so good for everyone. Obviously, full inclusion didn’t work for Jack. That doesn’t mean that inclusion can’t work for Jack. It just means that inclusion done right is really difficult and if it’s not done right, it really isn’t right.

Jack is in a specialized program for kids with a certain kind of autism, but he spends a big chunk of his day with typical kids in general education classrooms. He always has support and he’s been doing pretty well. For the most part, we are really happy that he is where he is and with the people he is with. It’s not a perfect situation, but what is?

Jack had a chorus concert at his school today. He had a tough time at his afternoon concert, but an even harder time at the evening concert, which he wanted to participate in, but couldn’t handle without poking at and bothering the other kids. We ended up leaving after one song. It wasn’t great.

The truth of the whole thing is that this evening, Jack, an autistic child, was put in a stressful, stimulating, pressure-filled situation without supports. I am partly to blame for that. The school carries some blame too. The truth is that I failed to make sure he was taken care of well enough.

I learned a lesson tonight though. I learned that even though the school carries the responsibility to make sure that Jack is supported at school events, I can’t count on that and I have to be the one to make sure he is okay. This is a lesson that I have learned many times.

It’s too late to help Jack with chorus this year; there are no more concerts. That one is on me. That said, Jack is going to be in a similar situation soon. He is participating in his school’s Geo Bowl, which is a geography quiz show-style competition. He is the only autistic kid on his team (as far as I know; I don’t actually have neuropsych reports on the other kids).

I am worried about the Geo Bowl. I am worried about the stimulation and the sensory overload and the need to communicate quickly. I celebrate the inclusion that put him on the team, but I worry about how it will be carried out. I don’t know how to help make sure that the Geo Bowl is inclusion done right.

Jack has wonderful support at his school during the day. But I have to make sure that he is supported in the right way. I can’t fail him again. I wrote about the Geo Bowl for White Knuckle Parenting this week. If you have thoughts about anything that might help him, I would love to hear them. Or if you have calming words, I always like those too.