The Future of Stimeyland. Let’s Discuss.

I started blogging in March 2007. I was so happy to have found this medium. I’d been writing for years, but had never found a style that suited me until I discovered what became Stimeyland. It’s hard to believe that I’ve been doing this for eight years. Yet while Stimeyland is still my home, it isn’t the consuming passion it once was.

I write here—and anywhere, really—so much less than I used to. Sometimes it feels as if I might just trail off and never come back. But I still really do love this space, the creativity it lets me express, and the people it puts me in touch with.

Considering how different things are here now, I thought I’d answer some questions that I imagine my invisible reader to have.

Wait. You think you still have readers? There are a couple of you out there and I loooove you. Also, I’m pretty sure my mom still reads here.

How has your approach to blogging changed over the past eight years? While I’ve always considered my primary motivation to be creating a record for my kids and also doing my bit for autism acceptance (and rodent joy), I started years ago with a bigger focus on reaching a lot of people. At this point, I mostly just care that my writing amuses me and satisfies my need to express myself. In fact, I kind of actively don’t want more readers right now. You guys are enough for me.

What’s to blame for your decrease in blogging? Is it because of your job? Is your new house sapping your motivation to write? Is it Alex? It’s probably because of Alex. It’s Alex’s fault, isn’t it? You’re right, it’s totally Alex’s fault. Actually it’s a combination of things. Part of it is that I’m busier now. Part of it is that my computer desk isn’t in front of the TV anymore, so I often sit on my couch all computerless in the evening and hang out with Alex. So, yeah, it’s his fault. But really, a lot of it has to do with a change in how I want to write about my kids.

Kids? Oh, right. I remember them. They’re still around? I don’t write a whole lot about my kids anymore, but I assure you that they are still here. There are all kinds of things I could write about them (and kinda want to), but they’re old enough now that their stories are theirs to tell, not mine. If I’m going to be completely honest, their stories have always been their own and if I were starting a blog now, I would do it very differently. I don’t regret what I’ve written in the past, but it’s not what I want to do going forward.

What’s that thing you used to write about? Autism? Is this still an autism blog? At one point, I felt very comfortable describing Stimeyland as an autism blog. While the fact that I and other members of my family are autistic means that this will always inherently be an autism blog, I don’t specifically write about that topic very much anymore. Part of it is because of that kid stuff up above. Part of it is that I’m still figuring out this stuff about myself and I’m preferring to read others’ insightful words than putting my half-baked thoughts out there.

So what will you write about? I’ll probably mostly torment Alex and tell you about it.

Screen shot of a text: Me: "hi, friend." Me: "I said, HI FRIEND." Me: "I SAID HI FRIEND." Me: "IIIIIIIIIIIII SAAAAAAIIIIIDDD HIIIIIII FRRRRIIIIEEENNNDDDD." Alex: "hi" Me: "What do you want?"I amuse myself soooooo much.

But for real, what will you write about? Myself.

Isn’t that kind of narcissistic? Yeah, totally.

So, really? All about Stimey? I’ll probably write about running and cats and maybe zombies and I still have six elderly gerbils so there are six memorial posts right there. I might toss up shorter posts or photo posts. Really, I’ll write about what amuses me or makes me feel something. Sometimes my family does some sort of activity that I want to write down and remember, so I’ll write about that. Sometimes I’ll write about my kids if it is something that I feel meets my criteria of okay things to write about.

How is this a change from what you’ve already been doing? In recent months, there have been times I’ve wanted to write about something like a fun outing my family has taken and I haven’t, because I’d think, “Who cares about that other than me?” I’m going to start writing about those things. Instead of thinking about my posts as little stand-alone articles, I’m going back to thinking of them as a family history.

So… So…pro: I might write more often; con: it will be stunningly uninteresting to everyone but me.

Ugh. Will you hate me if I unsubscribe? Absolutely not. I never feel bad if people don’t want to read my stuff. I am not everyone’s cup of tea (or tank of gerbils). In fact, we can be friends on Facebook instead of (or in addition). Find my personal page or my Stimeyland page. Or both!

I hate Facebook. I tweeted at you. Why are you ignoring me? I used to love Twitter. Now I check it once every three or four weeks. It is not the best way to reach me anymore. I’m a Facebook girl. I don’t even Instagram because it’s too many sites to check.

How long will you keep writing? Maybe forever. Maybe this post will languish here alone at the top of an abandoned Stimeyland. Who knows? I intend to keep writing, but I don’t want to make any promises. Every time I promise to write about something, I don’t and then I feel bad about myself.

Can I see a photo of a gerbil in an acorn cap? Yes. Yes, you may.

Photo of a white gerbil wearing the top part of an acorn as a hat.

Happy New Year!

Well, I had a very successful last day of 2014. I finished cleaning my whole house (except for that one room that we won’t speak of; everyone has that one room, right?) so we can at least start the new year not living in filth.

I also managed to wear a white sweater all damn day long without spilling anything on it. It’s like I’m a fucking magician or something.

I was printing out my blog yesterday as I do at the end of every year (it took less paper than ever before) and realized that Team Stimey may have had a more epic year than we have had in a long, long time. And the funny thing is that almost none of it was planned prior to 2014.

Probably the biggest thing that happened to us is that we bought a new house, moved, and sold our old house all within three months, when we hadn’t been planning to do any of that for at least another year. During that period of time, I touched every single thing we owned twice, once to pack them and once to unpack them, yet I still never found the brown clogs that I KNOW were somewhere in the house we moved out of.

WHERE THE FUCK DID THE BROWN CLOGS GO?

This will probably be the only year that the car we bought isn’t the biggest purchase we made. We weren’t planning on buying a new car either, except our mechanic told us that our old car was likely to kill us (and soon!), so we got to hemorrhage money on wheels in addition to a house. Per usual, the process was soul-destroying.

The last major thing that happened to Team Stimey this year that we had not planned on, was my joining the staff of the Autistic Self Advocacy Network as office manager. I was completely terrified to take that job. I’d worked in the recent past, but it was out of my home and I only had to see my boss once a year at a holiday party. This job involved riding Metro into DC multiple days a week to wear business clothes, procure summer childcare, interact with actual people, and generally be a professional person.

None of these things come easily to me, but taking that job is one of the best things that I’ve done in recent memory. I love working for an organization that I feel so proud of and I feel as if my particular skill set is very helpful there. I really like my co-workers and have liked getting to know them. I enjoy my new-found sense of purpose and I am so grateful for the structure and routine that working has brought to my life. Also, very importantly, I am so happy to experience autistic space, something I haven’t had before.

So those are the really big, full-year impacting changes for Team Stimey, but there was also a lot of other stuff that happened as well. I’ve selected one post from each month to give you a little tour of Team Stimey’s year.

We started January with Jack’s early-2014 bout of rogue eyelashes. I’m happy to report that they didn’t come back.

I did a lot of running in 2014. In February I told you all about how I’m the best runner ever. In case you don’t bother to click that link, you should know that I’m being sarcastic there.

March brought us more Jack, specifically his special hockey tournament that made me truly remember the joy of travel tournaments with his team.

2014—April, specifically—brought us Chester, a small brown mouse who tried to fill Algernon’s paw prints.

May. Oh, lord. May. May was the month that we gave our pool to some friends of ours, along with a free extra gift of wild rat babies. Yet one more reason you might not want to know me in real life.

June was an intense month for Stimeyland. That was the month that my post about Jack and his autistic classmates’ photos being left off of a display of all his school’s graduating fifth graders went as viral as I ever hope to have a post of mine go. The attention from that post, even though it was mostly positive, was enough to convince me that I am completely happy staying a small blogger. I have no idea how some people deal with the intensity of that much attention all the time. That post actually inspired real change though, with the formation of a committee at that school to work on ideas for better inclusion. Jack is no longer at that school, but I attended the first committee meeting and am hopeful that it continues and is making positive change.

Alex and I actually went on our first kid-free vacation since…ever in June, but I wrote about it in July.

My kids went back to school in August. Sam started 7th grade at the same middle school he went to last year. Jack started 6th grade at a new school—and proceeded to be super successful there. Quinn started 4th grade at a new school, which was pretty tough on him. He’s doing better though. Also, I wrote about the bus stop.

I ran my first half marathon in September. Because I’m me, I fell flat on my face twice during the running of said half marathon.

I wrote about a bunch of fun things in October, including my trip to Disney World as well as the Bourbon Chase, but I choose to highlight Sam’s decision to start playing the bassoon because (1) I haven’t highlighted anything about Sam yet, (2) you guys left some awesome comments on that post, and (3) Alex was definitively told he was wrong, which I always enjoy. It turns out that, although he gets better every week, learning to play the bassoon is hard and I’m not convinced that Sam doesn’t wish he’d never started.

We raked a lot of leaves in November.

Quinn drew some excellent illustrations for an assignment in December.

All in all, it’s been a really wonderful year. Team Stimey is very lucky, mostly because we have each other as well as a strong support system who always steps up for us. Thank you for being here for this year. I hope you all have a 2015 full of love and joy and laughter. That’s what we’re hoping for.

As I watch my three kids play with each other as Alex and I sit on the couch together, I think, fate willing, there is a good chance that’s exactly what we’ll get in 2015.

Photo of my three kids

Small Epiphanies

A long time ago, I figured out that I was autistic based largely on things I learned from Jack and because I was researching things about him. That, and other revelations about myself that stem from Jack (and also my other kiddos sometimes) still arrive from time to time and I always feel like a dumbass for not having figured them out sooner.

Let’s take breaks from school and routines for example. I have long known that Jack is far more regulated during the school year, when his days are structured and full. Within the past year, I’ve come to realize this about Quinn as well. He may complain endlessly about being forced to go to school, but he is far happier and put together when his days have routine than when he is untethered during summers or other extended school breaks.

I finally added a couple of things together in my head and realized that what I often refer to as ennui could be brought on at least partly by my own dysregulation from lack of structure and routine. I swear to god, I almost heard the BING! above my head as the lightbulb clicked on and I started flashing back to times when I have felt depressed and at loose ends for no real reason. I don’t really need to go into a lot of detail, but suffice it to say that I could trace this pattern back for years.

I had my revelation yesterday and although I know that it is not a problem so easily fixed, I decided to take a step in the right direction today by doing something other than sit on the couch, eat caramel corn, and feel depressed—and not just because I ran out of caramel corn.

Thus began Operation This House Will Be Spotless for the New Year, ensuring that the remainder of 2014 is regulated, tidy, and involves everyone being resentful and angry that I’m making them clean all the things.

I vacuumed under my couch, people.

I found french fries.

I felt a lot better today having a goal and getting something done. I understand that it’s not always as easy as “give a depressed person a task and they’ll feel better,” but today it helped. I think that recognizing that there is a pattern will help me at least recognize why I feel the way I do during these times and prepare myself for them.

Life is a process, folks. I’m getting there.

In Defense of Jerry Seinfeld

I should start by saying that I have been scripting Seinfeld the TV show for years. If you’re talking to me and I bust out with some non sequitur that is only semi-appropriate to the situation, odds are that Jerry Seinfeld said it first.

So I was interested when I first saw news reports about Jerry Seinfeld saying he thinks he might be on the spectrum. And then I felt happy. And then I checked social media and I saw lots of anger at him. And then I felt kinda sad and I couldn’t stop thinking about it.

Here’s the thing: I don’t know Jerry Seinfeld. I don’t know his private life. I don’t know how he came to the conclusion that he is autistic. And what’s probably most important, I don’t know his inner life—what goes on inside his own head. None of us do, so I don’t think we are qualified to weigh in on whether he is autistic or not.

Here’s something else: It is very scary as an adult to come out as autistic. It is very scary as an adult who has “passed” for your whole life to come out as autistic. It is hard to tell people who might not believe you that you are autistic. I am absolutely positive that people have doubted my diagnosis, have said that I’m not autistic or not autistic enough.

I am not willing to do that to another person.

I will follow that up with the comment that I absolutely respect self-diagnosis and assert that there are many, many reasons that adults self-diagnose instead of seeking a professional opinion.

I also think it is hard to learn to own your autism when you come to it as an adult. There is a whole set of stigmas and hardships and abuses and discrimination that people who are diagnosed and out as young people have to deal with that I did not. I don’t have that experience. What I have is the very nervewracking experience of growing up different and eventually finding a name for it and finding the courage to take that label for myself.

Still, it is hard to take that label, especially when you have been trying to live as a neurotypical person. So I don’t take much offense to Seinfeld’s use of “on a drawn-out spectrum.” When I first started suspecting I was autistic, my statements were very tempered, “I have autistic traits…” and the like. It is too scary to just come out and say “I am autistic,” so it’s easier to make these softer statements like, “On a drawn-out spectrum…”

I do know that I identify with some aspects of his personality. I think about his comedy and his observational style of humor and about how so much of it is finding the absurd in the conventions of daily life.

I use humor. It is one of the most important things to me. I find life hilarious. I also use comedy as a shield. I use it as a defense mechanism. I use it to amuse myself when I find the typical world strange. I created an entire persona (hey there, Stimey!) that allows me to get out of the house and interact with the world without falling back into crushing depression or incapacitating anxiety. (Also medication. Meds help too.)

Furthermore, I have been closely observing people all of my life, from the gestures they use and the words they say to figuring out social conventions and how I’m supposed to react to things. I remember watching a scary movie as a young person and checking to see if people screamed words or just sounds so I would know what to do if I was ever attacked (by an alien). I remember watching people when I was in college and deciding that I should make eye contact because that’s what other people did, so I started doing it all the time. These are just a couple of examples.

I am not attributing my own feelings and past to Jerry Seinfeld. I’m just saying that when I think about what he said, it makes sense to me. Plus he hangs out with Larry David, and I’m sure those two have to have had conversations about autism, because have you ever listened to Larry David?

I do know that if I had come out as autistic and been attacked the way he has been, it would have broken me. I don’t know what is going on in his brain and I’m not going to judge. I hope he will choose to speak more about it and I hope it will help all of us in the autism community. Jerry Seinfeld has a huge public platform. I hope he uses it well.

That said, I also hope he finds identity and knowledge and acceptance just for himself, however he chooses to identify. Because that is what most of us want. Welcome, Jerry. I’m happy to have you in my community.

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?