Noise Dysregulation and Running Regulation

Saturday evening started out rough for me.

Our neighbors had a party and we could hear their music in our house. And I know that people are allowed to have parties. And even though I think that after you reach a certain age, you are supposed to have parties where the music only lives inside your own house, I know that people have parties with loud music.

Unfortunately, music seeping into my house from the outside is one of my biggest sensory nightmares. It completely dysregulates me. I have to wear headphones with my own music blasting, but I still can’t do much that is functional. I get agitated and stressed and a rock drops into my chest and I have to escape.

It’s pretty horrible, honestly.

Fortunately, on Saturday, I had someplace to go.

I had signed up for an 8K race that started at 8:45 at night. I was an early arrival thanks to my fleeing the house, but at least I had plenty of time to decompress.

The bummer of the whole thing, however, is that I had absolutely no desire to run five miles, especially after my rough early evening. Adding to that is the fact that running has been really tough for me lately. There are a lot of reasons for that, chief among them being that I barely ran at all in May and June because of everything that was going on in my life. In addition, I don’t know if you’ve noticed, but it is damn hot out there. And humid. And generally horrible.

Saturday night was cool and dry though. And two of my running friends who were running the race also met me at there. They are super fun to be with and by 8:45, I was relaxed again.

Sadly, I still didn’t want to run five miles.

Happily, I didn’t have a lot of choice in the matter, as I was lined up in the race corral wearing a number and my running shoes, plus my friends probably would have been confused if I’d just sat on the ground instead of moving forward.

So move forward I did.

Step step step step/breath. Step step step step/breath.

I started to run and with each quartet of steps and each breath, I felt better. My body loosened and relaxed and I settled in for the next hour of steps and breathing. Because when you really look at it, that’s all running is—steps and breathing.

As it turns out, everything I needed after getting away from my house that night was steps and breathing.

I returned to my house late Saturday night, happy, tired, and (thank god) to a neighbor who had turned off his music.

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.

All Around the Internet and Maryland

Today I have links for you instead of a post. You probably know that this month is Autism Acceptance Month. The Thinking Person’s Guide to Autism is featuring stories about autistic people this month and today it was my and Jack’s turn. Check out how awesome the Jackster is over there.

I am also being featured as a Mom’s Life Uncensored Blogger on the Stir this month and the other day they reposted one of my stories from a little more than a year ago. It is about the day I took my kids to ASAN’s Day of Mourning and Sam’s incredible reaction to it. Check out how awesome the Samster is over there.

I wish now that I had a link to something about how awesome the Q-ball is, but I don’t. Rest assured, however, that he is. Awesome, that is.

I also want to take this opportunity to remind you that Listen to Your Mother shows are coming up over the next weeks. Find one in your area. I, personally, am going to see friends in both the DC (May 4) and Baltimore (April 26) shows. I can’t wait! Why don’t you join me?

Exercise and Win

I write a lot about Jack’s hockey team and how much it means to me. As part of that, I also write about what I think it means to him as well. I talk to him about it and I watch him both struggle and triumph at practices and games, but sometimes it is hard to know what he really thinks about his team.

That’s why I was happy to see the paper that he brought home with him from school today. His school is doing its “family life” (read: they’re teaching the kiddos about puberty and adolescence) lessons this week and, as part of that, they apparently had to fill out a worksheet about social groups in their lives. Jack chose his hockey team.

Photo of part of Jack's worksheet. In answer to the question, "How was it formed?" under "Hockey Team," Jack has written "formed by hockey players, passed down to kids."

Actually, the Cheetahs were originally created as a bar mitzvah project. The story of this team’s evolution from its small start to what it is today is a pretty incredible one.

Among Jack’s answers about how much time he spends with his group each week and so on, were some pretty telling thoughts.

When asked what the purpose of the social group was, he didn’t write that it was to learn how to play hockey. He didn’t write that it was to win championships. He wrote that the purpose of the Cheetahs is to, “work as a team, cooperate with others.”

I think that’s pretty cool and says a lot about the coaches of the Cheetahs that this is what 10-year-olds learn from them.

Asked to answer what contributions he makes to the group, Jack wrote, “Everyone gets to play, score—and win.” The kid has been paying attention.

But my favorite answer was to the question, “How does this group benefit you?” to which he wrote, “I get to exercise and win.”

I find my kid so charming.

Jack’s charm aside, though, he’s totally right. That team is full of exercise and win.

See, I believe in inclusion. I would love it if every kid could find a way to meaningfully participate in their community and school sports teams. Some Cheetahs do. We have players who play on those teams in addition to the Cheetahs. But there are some players, including Jack, for whom a typical hockey team as they now exist just would not work.

Aside from the opportunity, I love the role models Jack gets built into the Cheetahs that he wouldn’t get if he were playing on a typical team. I love that he has role models who were kids just like him, but who are now a few years older. Having those older teammates with similar neurology is of tremendous benefit to the younger kids on the team. I hope to see Jack grow into the same leadership roles that I see some of his older peers taking.

A few weeks ago, Jack was having a tough time at practice. He had a mentor (a teenage boy) working with him, trying to keep him engaged and happy on the ice. It was a little bit of a losing battle. For whatever reason, Jack just wasn’t into it that day. No matter what his coach and mentor did, Jack didn’t want to participate in the drills and he was surly as hell. I was pretty sure he would end up coming off the ice early that morning.

Then this older player who was helping out that morning saw what was happening and skated over to the two of them. That player and the mentor came up with their own little drill just for Jack. Within minutes, Jack was laughing and skating and participating and being all-around awesome.

That few minutes really cemented what I love about the Cheetahs. See, the Cheetahs aren’t just about typical teens and coaches helping the players. It is about self-leadership and teamwork and peer mentoring and cooperation and self-direction and learning all of that while getting a great workout. It is about that older player seeing a younger player struggle and stepping up to lead and teach and connect.

In other words, it is about exercise and win.

*****

Thank you so much to Barbara and my mom for donating to this year’s Cheetah-thon! The whole team appreciates it so much. We still welcome donations for this year’s big fundraiser through May. Thank you for thinking of our team!

Wiggles

Today was Jack’s dentist appointment to have his baby tooth extracted. Or at least that’s what I think happened. It’s hard to tell, because no one at the dental office actually used the word “extraction.”

When I walked in, the receptionist confirmed what Jack was having done by saying, “The tooth fairy is coming tonight then?” Everyone else at the practice seemed to call extractions “wiggles,” as in, “We’re just doing the one wiggle today?”

I might have gone with, “We’re just ripping out the one tooth today?” but I guess that’s why I don’t work at a pediatric dental office. It also might be why Jack started crying when I told him what was happening this morning.

Oh, I kid.

Jack did really well. The hygienist gave him gas, which was delivered via a bright pink plastic nose that sat atop his real nose. This only became a problem when they gave him fancy glasses in which he could watch the movie he’d picked out and there were so many things on his face that whenever the hygienist tried to do something to his mouth, she jiggled his glasses, resulting in his crying out, “I can’t see the movie!”

I was pleased that he seemed more concerned about the movie viewing than any discomfort. That said, it wasn’t easy peasy for him. It was hard for him to tolerate the things they wanted to put in his mouth and he sure didn’t care for the numbing needle. (I didn’t either; it was HUGE.)

It also took him some time to adjust to the gas, although once he did, he was doing aaaaall right. He got all floppy like and at one point he got the hygienist’s attention to say, “Do you feel your bones vibrating?”

Evidently he was on the good stuff.

The extraction itself was quick, involved lasers, and wasn’t the worst thing that’s ever happened to Jack.

Even though the appointment obviously wasn’t his favorite hour of his life, he did a great job and he was totally unfazed afterward. He seems to have recognized that this appointment was something that had to be done and that sucked but that he could get through, which, incidentally, is exactly the same way I look at dental appointments.

I ended up keeping him home from school all day so that he could sit on the couch and staunch the bleeding of his gum. He very happily complied.

Jack lying on a couch, head on a pillow, under a blanket, holding a washcloth up to his mouthWe came home and I let him watch a movie—the very movie he’d chosen to watch at the dentist’s office. He made me start it over from the beginning, presumably so he could watch it without having to fight his nose gas for face position.

I’m so happy that’s over. I’m sure Jack is too. I had been nervous about it. Now I’ll have to find something else to be nervous about. As long as the tooth fairy remembers to come, this dental adventure will be all happily wrapped up.

Tournament of Smiles

Special hockey tournaments are great. I’ve never been to a bad one and I’ve been to quite a few. Some, however, stand out as exceptional. The tournament in Jamestown, NY, that Jack and I went to last weekend was exceptional.

Talk about the magic of special hockey. Watching Jack’s team skate, I felt that “my heart is growing in size and capacity for love right now” feeling that I love so much and feel at those most exceptional of tournaments.

I love the intensity of travel tournaments where it is me and Jack pinging from the hotel to the rink and back. The immersion of the experience makes it that much more amazing. Add in the group of players and parents that came along and all was good.

This particular tournament was also fantastic because of the way the coaches divided up our players. The Cheetahs took three teams: an advanced team, an intermediate team, and Jack’s team. Jack’s team—the C Team—featured a lot of newer and younger players, while many of the more advanced kids who had been on the C Team before moved up to the intermediate team.

I missed watching those kids play and missed hanging out with their parents in the stands, but that change made a huge difference for everyone. It let those kids move up and stretch and it gave the kids still on the C Team way more of an opportunity to get their sticks on the puck and really be involved in the games. It was so fun to watch these kids really open up and get into the game. Not to mention that the parents of the C Team are, without exception, phenomenal, fun, supportive, awesome people.

The stands during the C Team games were a heart expanding place to be. It was all about your baby is my baby and the magic of special hockey. Like you wouldn’t believe.

Our trip started out auspiciously enough. One reason Jack loves going on these trips is because he gets to skip school. This trip he even got to skip a standardized testing day. Even better, he got to skip school and go on a trip with his best friend, who was sitting on the bus in the seat right behind him. All was well.

Jack sitting on a bus with a smile on his face.

See? All. Well.

Hey, here’s something. Remember way back when Jack went on his very first tournament and I was worried about what the bus was going to be like? I was concerned that he might barf and then we’d be trapped on a bus with his puke for an extended amount of time? Remember that?

I briefly remembered that fear a couple of hours before we boarded the bus for this tournament. Then I discarded it because we have taken the bus to and from, what, five tournaments over the past four years and he hasn’t horked on the bus even once.

Do you wonder why I bring this up?

You don’t. I need say no more.

All I’m going to add is that the road through the Allegheny National Forest is not one that should be taken on a bus. That’s all I’m going to say.

Also that Jack recovered very quickly and happily bopped along to his iPod for the rest of the ride while I babysat his vomit. Good times.

Jack is sitting in the dark in front of a window with lights blurring by in the background. His face is lit from the light of his iPod.

Music soothes everything about Jack.

I did a lot of thinking at this tournament about how far Jack has come since that first tournament, and not just in terms of carsickness.

That first tournament I was stuck to Jack like glue. I didn’t dare let him out of my sight because he was young and prone to wandering. I worried if he was out of my sight for more than a few seconds. He was overwhelmed and overstimulated and even though I think he appreciated the trip, he didn’t manage to make it all the way through any of the games he was supposed to play at that tournament. He ended his last game midway through by throwing his gloves at the dad by the bench. I’m not sure he spoke to anyone but me for the entire four days. That tournament was magical for a lot of reasons, but it was also super hard.

This year Jack was relaxed and happy. I stayed with him all weekend, but we are at the point where I am comfortable letting him roam away from me. (“You can trust me, Mom,” he even told me at one point. “I know I can,” I responded.) He has friends on the team now and will even talk and play with kids he doesn’t know. (He spent part of an afternoon playing a cannonball-into-the-pool game with a kid on his team he’d never interacted with before. I got splashed.) He not only played all four of his games, but he put energy into them and looked like he really wanted to be there playing.  We were able to collaborate on our schedule instead of one of us being in charge. He was calm and happy. I was calm and happy.

Progress happens, people. It really does. Joy does too.

Jack’s team played four games again this trip. Their first game was versus the Steel City Icebergs. The Icebergs only had three players at the tournament at game time.

Not a problem. This is special hockey.

Several Cheetahs put on their dark jerseys and jumped on the Steel City team. Jack was one of those. He was so into it. Maybe a little TOO into it. He played harder and with more engagement than I have ever seen on him. Instead of his usual lackadaisical skating pace, he chased the puck. He got in the mix with his stick. He paid a huge amount of attention to the game. He worked so hard.

It’s almost like he had been waiting to play against his own team. I wonder if he has some sort of grudge against the Cheetahs. (Kidding.)

Jack in a black Cheetah jersey facing off against a player in a white Cheetah jersey.

I’m pretty sure he probably did some trash talking down there on the ice.

The rest of the tournament was similarly awesome. Everywhere I looked were smiles. The Cheetahs’ head coach was on the ice for every single Cheetahs game of the tournament. That is 12 games in two days. I didn’t see him without a smile even once. I watched players create and deepen friendships and they wore beautiful smiles as they did it. I watched parents cheer on their kids—and everyone else’s kids—and soaked in their smiles. There was so much good energy.

Naturally, there were some hard times. Like itchy toes—Jack’s itchy toes. For some reason last weekend was the weekend of itchy toes, but they were only itchy once he’d put them in his skates and I had laced them up. One memorable game, I had to relace his skates FOUR TIMES.

Also, he made me scratch between his toes because, “Mom, I don’t have long fingernails.”

I forgot to take my camera to the tournament so I only have bad cell phone photos from the weekend, but even so, I managed to capture some of Jack and my idiosyncratic joy.

For example, we both laughed really hard when we saw that someone had drawn faces on all of the little pegs that decorated the top of the hotel elevator walls.

brown wall with a close up of a metal peg on which someone has drawn two eyes and a mouth with a marker.

I like that Jack and I find the same things hilarious.

Then there is Jack’s love of hotel breakfasts.

Photo of Jack at a table. On the plate in front of him is a waffle topped with three small chocolate doughnuts. He also has a cup of apple juice.

The waffle is really more because it is fun to make waffles at hotel breakfast buffets. Still, Jack would peel off about an eighth of the thing to eat.

Pool time is always an important part of hockey tournaments. Sometimes you’ll find most of the Cheetah team packed into one square of water. Sometimes you will find only one player.

A hotel swimming pool. All you see is the still surface of the water with Jack's head poking out in the top right corner. He is wearing reflective goggles.

He’s like the cutest little bug ever in this photo.

We also spent some time cheering on the non-C Team Cheetahs. This is one of the reasons I like the travel tournaments. We always try to catch some games that Jack isn’t playing in.

Photo of Jack eating popcorn and watching a hockey game.

Sometimes it’s good to just be a fan.

Almost as fun as watching hockey is watching the Zamboni.

Photo of Jack's back in uniform as he watches an ice machine clean the ice.

That never gets old.

There was also evidently some time spent rolling around in charcoal.

The front of Jack's white jersey on which is a Montgomery Cheetahs logo and a fair amount of black smudging.

How, when this is only worn on ice, is it possible for a jersey to get this filthy?

Jack also always manages to find whatever mascot is available for hugging, in this case, the Baltimore Saints’ Saint Bernard. (I just figured out why their mascot is a Saint Bernard. The “saints” refers to the dog breed. Duh. It only took me four years.)

Jack with his arm around a mascot in a dog costume with a hockey jersey on.

After I took this photo, Jack turned to the dog and said, “You’re awesome!”

Jack also added to his medal collection. That boy has more hardware than the rest of Team Stimey combined.

Jack in his jersey holding up a medal with a stick and puck on it.

To be fair, he totally earns them.

I look at these photos and I think about Jack’s games and his friends this past weekend and at his first tournament four years ago.

Everything has changed, but still, not that much has. I still find myself stopped short by the realization of how much I love that boy. I am still brought to awe by how amazing my wonderful kid is. I still get so much joy out of the privilege of being able to spend four nonstop days with this terrific kiddo.

And still, four years later, I am so grateful to the people behind this wonderful team that creates these safe places for athletes like my son to be exactly who they are and experience a sport they might not otherwise be able to play. As always, thank you to those people—thank you to the coaches and the team leadership and the people who plan these tournaments. Thank you. I thank you and Jack thanks you.

Jack in full game gear on his way from the locker room to the ice.The Cheetahs are kicking off their fundraising season. Our annual Cheetah-thon will be May 3rd this year. We would love to invite any locals to skate with us and our team that evening. We would also be honored if you would consider donating to the team. This fundraiser makes it possible for the team to practice every week for a nine-month season. It lets this all volunteer-run organization provide a wonderful team experience and the opportunity to attend tournaments like the one in this post at very small costs to special needs families.

You can find information about the Cheetah-thon at this link. You can also donate there. If you do so, please let me know that you have donated in Jack’s name so I can be sure to thank you.

En Fuego

I disappeared over the past few days because Jack and I went to Jamestown, New York, for a hockey tournament. Those tournaments are always amazing and this one in particular was really magical for me. It was just so very good. I really, really felt the magic of special hockey last weekend.

I also felt the magic of catching my kid’s barf in a bag on the team bus—twice—but that is a whole other story.

Regardless of being provided with so many wonderful things to write about, tournaments leave me wiped out and more likely to sit quietly and watch Netflix in my hotel room while Jack sleeps than actually write something. Hopefully that will be rectified by tomorrow evening when I try to put some of that magic into words.

Until then, I will put that magic into a photo of Jack, showing off the new hockey tape he insisted we buy out of the vending machine at the tournament rink that sells everything from skatelaces to…hockey tape.

Photo of Jack all geared up in his game jersey and helmet, holding a stick, the blade of which is wrapped in black tape printed with yellow, orange, and red flames on it.Jack says he’s blazing.

He’s right.