Q is for Quirky

Quinn is an enigma. I have gone back and forth on whether that kid is neurotypical more times than I can count. I have really valid arguments on both sides of that fence. I eventually settled on calling him quirky and called it a day.

He had an IEP for a couple of years, but pretty much just for handwriting. He was dismissed from special education last year, amid a stack of normal test results and teachers and specialists who said he was totally within the parameters of first grade behavior.

I remember saying at the time, “Huh. I guess maybe he just seems weird to me because he’s typical and I don’t understand typical.”

You know what? That kid ain’t typical.

Sure, he talked on time. Sure, he can hack social relationships. No, he’s not repetitive. But, yes, he has a billion sensory issues (normal sensory profile administered last year notwithstanding). He has some anxiety. He is crazy rigid. He is obsessive.

Most of all, he is fun and nice and charismatic and adorable and silly and funny and wonderful. I love that kid so much. He is wonderful.

He is quirky as hell though. It’s hard to put your finger on him. So I kind of stopped trying. I decided to let him be him.

Now, there is something else you should know about Quinn. He is a third child. He’s never been on a team or taken a weekly class or anything like that. I finally signed him up for gymnastics and he just had his fourth weekly class Saturday.

I picked a gym that we’ve been to for open gym time and that Quinn loves. The reason we knew about it for open gym is because it is well-regarded in the local special needs community because they do one-on-one “motion education” classes with kids who have special needs.

The first day we went, it was chaotic. There were a bajillion kids and parents in the waiting area, especially because when we arrived, both the parents collecting their 9 o’clock kids and those of us dropping off our 10 o’clock kids were all there.

Quinn kind of freaked out. Then he found out he had to wear a name tag sticker and he lost it. He wanted to leave. He started yelling about wearing stickers and how terrible it is to have to do such a thing. Also, he knows all about the “pat on the back/apply the sticker in secret” trick, so I can’t even do that.

Eventually he agreed to wear it on his butt.

Quinn's butt name tag

Quinn and his butt name tag.

Once he went into class, he was grumpy and irritated for about five minutes and then he was completely happy. He was following his teacher around talking to him and scratching his back and doing what he was supposed to do. I was pleased.

Happy gym Quinn

Don’t admit that you’re happy, Quinn.

The next week, he had another sticker freak out, but then joined in happily with his class. At some point though, I realized that he was with a class of much younger kids. It turns out that he had been with the wrong class for two weeks. I told the front desk and they moved him. (All the classes are in the gym at the same time.)

Last week, Alex took Quinn. Alex said everything went fine.

This week, Quinn ended up with a totally different group. I was more concerned that Quinn didn’t seem to be totally participating and didn’t notice right away that his group was different. By the time I really figured that out, Quinn was working one-on-one with a teacher.

I thought it was weird, but then I figured that if anyone could talk himself into individual attention, it is Quinn.

Quinn at gym

Quinn was extremely happy with this situation.

At the end of class, however, I did ask what was going on. The instructor said that he was kind of assessing Quinn because he was having a hard time in the regular class. This instructor seemed to be part of the special needs motion education team.

He told me a little bit about motion education and when I said, “Yeah, but it’s way more expensive, right?” he said, “Yes, a little.” (Answer: more than three times as much.) Then he told me about this certain kind of funding that they accept to pay for it.

Now, I know what that funding is, because Jack gets it for summer camp. You have to have proof of a disability to qualify for it. Quinn wouldn’t qualify. It was a little weird to me that he suggested that because the assumption seemed to be that we all knew that Quinn had a disability and that I would know what that kind of funding was.

It was all very confusing in the packed gym with requests for me to call next week to talk to them and me being confused about whether they were trying to tell me not to bring him back for his regular class and what is going to happen if they don’t want him in a regular class, because I can’t pay the motion education price. I mean, I don’t think they can kick him out, but I don’t want to be the asshole whose kid disrupts the whole class either.

All of this to say that I’m sort of rolling Quinn’s quirkiness around in my brain as if it were a marble. I don’t care if he is diagnosable or not. He is who he is and who he is is kickass. I don’t much care if there were a label on it. But I’m wondering if I’ve been too hard on him for being rigid and blaming it on his third child stubbornness when maybe it is something else. I may have to start thinking more about how I react to him.

I also wonder why I and his school are willing to shake off any thoughts of atypicality when some kid instructor at a gymnastics place can spot him right away. I mean, I’m not self-flagellating or anything and I’m not running him in for any evaluations tomorrow, but it is something to think about. If he stands out that much to others, that might be a sign that I need to try to understand him better and help him understand himself.

And, honestly, the fact that they were able to spot him as different was not all that surprising to me, which is maybe an indication that I hadn’t fully accepted him as typical anyway.

One thing I do know for sure is that Quinn will be okay with us. He fits right into this neurodiverse family regardless of what anyone else thinks of him. He is a quirky little dude and we like him like that. But I guess I’m not done wondering where he falls within that landscape.

Awesome

A lot of people have asked me how Jack is doing in his new school. I’m going to let him tell you.

We ran into Jack’s second grade teacher (and my friend) this afternoon after school. She asked him how school was. His response? An enthusiastic, “Awesome!”

Jack adored his teachers last year, but the work was really stressful for him. He told his therapist that school was “like a crash on the head”—or a bonk or something similar. I don’t think it really matters what sort of collision with his head he specified. It wasn’t good. Before school started this year, he told us that he was worried. He was worried that the work would be too hard. I was worried that he would be miserable, like he was last year. His reaction to school last year is the reason he has a therapist now.

He is in a class with a total of six kids and he is mainstreamed for a lot of the day. But the part of school that he has the hardest part with—reading, writing, inferences—that gets taken care of in his small classroom. He has kids he likes in the class. One of those kids lives only a few blocks away from us. His teacher is nice. His homework load isn’t too heavy. His bus schedule has worked out.

He thinks school is awesome.

He is happy.

Now, one of the things Jack’s prior school was really good at was pushing him academically, probably farther than I would have done on my own, and for the most part, it was good for him. I have to make sure that he remains challenged, because Jack has an awesome brain that needs to be engaged. Based on what I’ve seen, the teacher will likely be good at making sure he gets challenged the way he needs to be.

But, honestly, at this point, I don’t care. All I care about between now and parent-teacher conferences in November is that he is happy. That is my total goal. I want him to learn that school can be fun—or at least not like a head injury.

I think that might be happening.

Jack has been reading more lately. He’s read all of the Diary of a Wimpy Kid books a zillion times. This morning, Jack asked me to get him a notebook he could use as a diary, so I found one and had it waiting for him when he got home. During homework time, he ignored the math worksheet I kept trying to put in front of him and instead he started writing in his new diary.

He told me to pretend to drink my can of soda and look over the top of my computer at him. Which I did, in between sneaking photos of him.

Jack writing in his diary

He kept looking up to take note of what I looked like.

Do you know what was happening here? Last year, two or three times a week, Jack was supposed to read a book for a half hour and then write in a reading response journal. It was a nightmare. Forcing him to write something relevant and coherent after I’d forced him to read? It didn’t go well. At a certain point, I just stopped making him do it.

This year, Jack’s teacher asked if I wanted him to have to do a reading response, to which I vehemently shook my head no.

But look at that. That is a reading response. On his own terms. And, frankly, it is better than any of the paragraph-format reading responses he wrote last year. See?

Jack's diary

He told me I could look. I asked first, I promise. It is a diary after all.

I’m aware that this notebook probably won’t end up filled with a daily record of Jack’s life. But the way he merged his real life with what he was doing and with the bar graphs on his math worksheet and my soda and my tank top and, holy shit, that awesome picture of Alex?

I love that he could do that and that he wanted to do that.

At least for now, I feel that Jack is in the right place. He is happy. He is learning on his own terms.

And that is awesome.

*****

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Parenting (Autistic) Kids is Hard

“Be kind, for everyone you know is fighting a hard battle.”

Being a parent is hard. Really hard. When I say that, I don’t mean that I wish that I hadn’t had children or that I wish they were easier kids. I mean that raising other human beings that you love more than you love yourself is breathtakingly difficult.

Your child’s struggles—his anxiety, her aching desire to fit in, their stumbles and bumps as they travel their roads to become adults responsible for themselves—can be inspiring, heartbreaking, hilarious, scary, remarkable, stressful, unexpected, delightful, worrisome…add your descriptor here.

Sometimes it is many things at once.

It is impossible to know what it is like to be a parent until you are one.

Ever since I started blogging about my kids, which has been five and a half years now, I have consistently gotten emails, messages, tweets, personal hugs, and all other manner of communication thanking me for my honesty in writing about just how damn hard it is to raise kids. People tell me that they thought they were the only one. They tell me that they thought they were alone. They tell me how much it matters to them to know that they are not the only ones who are struggling.

Sharing that bond over the difficulty of parenting and acknowledging that it is so hard and even that sometimes our kids are assholes, well, that acts as a safety valve that releases pressure. Knowing that we are not in it alone, especially if the act of raising our children isolates us from each other, sometimes helps us make it through a heartbreakingly scary day until we can get to a delightful one.

Raising a child with autism or another disability often imposes even more isolation upon parents. In addition to the joys and problems that parents of typical kids face, we have a whole other set of hurdles (and, yes, a whole other set of joys as well). Yes, we get to experience the unique point of view that our special needs kids bring to life and we get the amazement every day of seeing what our beautiful autistic kids are capable of. I wouldn’t change the neurodiverse makeup of my family even if I could.

But we also face great challenges. We have to decide how best to help our children with their extra struggles in the face of confusing and conflicting information. We have to learn to advocate for our children, something that isn’t always easy, and is often extremely difficult. We have to help them navigate the social difficulties of the world, even if doing so is hard for us ourselves. Often we end up losing friends and family members because they don’t understand what we are going through, because our stresses are too much for them, because they want us to fix our children when all we want to do is accept and teach them. We lose the ability to socialize on the school playground because we have to keep track of our kids to keep them from “eloping” or having problems with other kids because of social difficulties. Some of us can’t leave our children alone ever, even in our own homes, and still count on them remaining safe. Most of us worry about making sure not only that we safely usher our kids to adulthood, but that we are prepared to keep them safe and cared for once they are adults and even once we are gone.

We aren’t underestimating our kids. We aren’t feeling sorry for ourselves. We believe in our children’s genius and their good and their capacity to learn and contribute and be happy. We are hoping for the best, but preparing for the worst. When you have a child, when you are a parent, that is what you do.

I’m not saying it is harder for us than it is for our kids. And I am not saying that people should pay attention to our needs more than those of autistic children and adults, but I am saying that our road is valid and important as well. I am saying that watching your child struggle in the way that autistic children do can break your heart. I am saying that parenting autistic children is hard.

This is not to say that I wish Jack—or any of my children—were different, were typical. This is not to say that I do not accept my child exactly as he is. This is not saying that I want pity or kudos for my parenting. This is only to say that parenting is sometimes hard.

Just as it helps parents of typical kids to hear that they are not alone, the same goes double for parents of autistic kids. When a struggling parent hears, “Yes. It’s hard,” “You’re not alone,” “This is what my family tried,” “It gets easier”? That can be life-saving.

I know a lot of parents of autistic kids and a lot of them feel like they can’t say publicly that it is hard to raise their children. They feel that if they break down and say that they wish they could have one easy day that they will be accused of not truly accepting and loving their own kids. Valid or not, they feel that they are criticized and judged whenever they say something negative about raising their children.

I know that there are are parents who don’t accept their children’s autism. I know that there are parents who want to “fix,” who want to cure. I know there are parents who do not speak respectfully about their children. However, most of the parents I know would fight lions with their bare hands for their children—exactly as they are. I know many, many parents who do accept their children as autistic—really, truly do—but who sometimes have days when they just can’t hack it. They know they will be able to pull it together tomorrow, but they need someone to tell them, “It’s okay. Yes, it’s hard. You’re not alone. You can do this.”

I believe that it is vital to hear autistic voices. I know that the number one thing that brought me to my place of acceptance and embrace of Jack and his autism soon after I first started learning about the spectrum was reading things written by autistic adults. Without question, I believe that their voices are the ones that we should follow. I know that just as you cannot know what it is like to parent an autistic child unless you parent an autistic child, you also cannot know what it is like to be autistic unless you are autistic.

Likewise, none of us can truly know anyone else’s experience. Your experience growing up autistic is not the same as my experience growing up autistic and neither of us had the same experience that Jack has growing up autistic. But we can all learn from each other, as long as we are willing to listen. I believe that conflict drives conversations forward and that dissenting opinions make everybody think harder.

But most parents really know their kids. And most parents really try hard. And most parents love and embrace their children for who they are. And even if everyone doesn’t, we can’t assume that just because someone says it is hard to parent their child that it means that they don’t accept everything about him. And just as it is vital to respect and amplify autistic voices, it is vital to let parents have hard days without judging them.

I know that autistic adults often feel disrespected by parents. I understand that, because I hear some things spoken by parents that bother me terribly (and vice versa), but many of us want nothing more than to respect both parents and autistic individuals. Sometimes we have to take a chance and lead with respect in hopes that we will be met with the same.

I have three beautiful children. They are amazing gifts to me. Some days, however, I want to sell them all to the highest bidder. When I write about feeling that way, I hope that I do it with humor and respect, and I also hope that some other parent out there reads it and is stronger for knowing that she is not alone.

Quinn, Sam, and Jack

They are everything to me. But sometimes “everything” is overwhelming.

*****

I tell my kids all the time to “lead by example.” Head over to White Knuckle Parenting to find out how I actually led my kids by example last weekend.

*****

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The Turtle

I’m not going to keep you in suspense about my 8k race.

(1) I finished.
(2) I ran the whole thing.
(3) I finished 621st out of 627 runners.

Oh, yes, I did.

In case you are wondering, I am the turtle referred to in the title up there. Slow and steady may not win the race, but it sure as hell finished it. I am really, really (really) proud of myself.

Check me out as I crossed the finish line:

Stimey crosses the finish line!

Actually, this is me re-creating my crossing the finish line for my friend Barrie who was took this super flattering photo.

I had an amazing time. Alex took Jack to hockey and Quinn to gymnastics and I headed out to the race by myself. I was so happy though to have my own support team there to take care of me. My friend Lindsay was there with her kids to run the 2-mile fun run and they stayed for me. Amazing.

My friend Emily made a sign to cheer me on and she rooted for me from two different places on the race route. Phenomenal.

My friend Melissa decided to race too and she kicked some ass. I saw her run off in front of me at the start line. I didn’t see her again until the end. She’s my inspiration.

Lindsay and Melissa, each joined by her kids, ran me in the last stretch. It was really wonderful. Although I’m a little mad at Melissa’s daughter, however, for leaving me in her dust in the last meters before the finish line. Evidently, she is still claiming to have won the race. That’s her in that photo above. I think she might be wondering why *I* am having my photo taken when clearly *she* is the one who won.

Then there were the people who stayed on the race course long after the fast runners, medium runners, and slow runners went by to cheer on the stragglers. I got a little teary around mile four when I ran past, among others, a guy emphatically clapping for me on his porch. People are nice.

I also learned that if you are one of the laaaaaaast people across the finish line, everyone cheers really loud for you and your sticktoitiveness.

Support like that is even more awesome than 8-minute miles.

I mean, I assume. I wouldn’t know for sure. It’ll be a long time before I run an 8-minute mile.

An 8k is aaaaalllmost 5 miles and I ran it in about an hour and 12 minutes, which means I ran about fourteen-and-a-half minute miles, which sounds about right. The GPS on my phone thinks I ran farther and faster than I actually did, which makes me kind of love the GPS. I mean, it was awesome to hear in my headphones: “You have run one point zero miles at 13 minutes and four seconds per mile.” Once it got to five miles though, and I still had nearly a mile to go, I started to wonder about its accuracy.

Stimey's 5.71-mile 8k

There are many funky things going on in this phone screenshot.

Let’s start at the top.

(1) 5.71 miles? That would make me awesome, but I don’t think I zigzagged along the racecourse enough to add a whole three-quarters of a mile to the route. I might need to invest in a better, non-iPhone-app GPS.

(2) Run/Jog: At least it didn’t peg my speed as “walk,” but way to twist the knife a little, Map My Run, with that, “Well, you’re not reeealllly running, are you now, Stimey?” dig.

(3) Again with the 5.71 miles. Yes. I know. You think I’m awesome, but you don’t have to lie to me twice.

(4) I started and stopped the app a little on the outside of my run, which added the extra time, but I DO appreciate the little gold trophy. Maybe they gave it to me because I ran so many damn miles. (5.71 of them.)

(5) A Burt’s Bees Facebook contest?! I should click that!

I had to scroll down and take a different screenshot for my next set of stats.

Stimey's race stats

I know you’re bored. But if you let me get it all out today, then I won’t talk about it for the next six months.

I’m not sure at what point I was running nearly 18 miles an hour, but good for me! I think my 3:22 min/mi pace might put me in some record books too. Either I’m not smart enough to understand these stats, or I actually won the race and the reason I was running by myself was because I was so goddamned fast.

I’m going to go with the latter.

Frankly, even a 13 minute mile is pretty outlandish for me.

Okay. So thems the basics. Some other stuff happened too. Let’s see. Here are some of them:

• When I got a text from Alex 15 minutes before the race was too start I was all, “Awwww, he’s texting to wish me good luck!” But he was really texting me to find out if I knew the wifi password at the hockey rink. I eventually forgave him, but only because he toted the children around all morning and then rubbed my back later.

• When that racewalker passed me at the half-mile mark and I never saw her again, I started to realize that I run just about as fast as most people walk. In fact, my race friends (although I don’t think they knew that’s who they were) were two women, one who stayed mostly ahead of me and one who stayed mostly behind me, who were walk/running the race and stayed at just about the same pace as my steady shuffle.

• There was a short stretch of road near the midpoint turnaround where I actually saw other runners because we were running on the same road. I was excited to get to the turnaround and see how many people were behind me. Yes, a million people passed me and a million people started and stayed in front of me, but I was sure that I couldn’t possibly be the slowest runner to have registered for the race. I was right. There were…several racers behind me. Like, at least 10—as well as the truck that picks up collapsed runners and cones to reopen the streets. I felt a little bit like that truck was a vulture circling around me.

• Also, can we talk about water stations for a minute? I run with a water bottle, because it helps me to run, but I got a cup of water at both water stations because I don’t pass up anything that is free. My question is, can someone tell me how you’re supposed to drink from a cup when you’re running? Even if you’re running slowly? At the first table, I took the water and promptly spilled it all over myself. Then I tossed my cup on the ground with all the other cups and felt like a criminal for littering. I think throwing cups on the ground was the hardest part of my race. The only time I walked was at the second water station, when it took me about ten feet to drink my water. And then, because it was so late in the race, there was already a lady sweeping up the cups. So I had to basically throw my cup AT her, which made me feel not just like a criminal, but an asshole criminal.

• I am super awesome. I ran an 8k.

You just wait until next year, Kensington 8k. I’m coming for you. And next time, I’m going to be one of the first 600 people to finish.

*****

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Running

Oh, you guys. You may have noticed that my site is a little…wonky. I’m working some shit out. Bear with me. Hopefully I”ll be all up and running smoothly by the end of the weekend. Before that, though, I am running my first race in a decade tomorrow.

If you’ll be at the Kensington 8k tomorrow, say hi! You’ll recognize me based on my Stimeyland t-shirt and my number 238, which is actually a number that has been kind of following me since my freshman year of college.

Two three eight! Two three eight!

You’ll also know me because I’ll likely be in the very back of the pack of runners. And bright red. Wish me luck.

Disaster! Catastrophe! Feedburner }:-(

Oh, good morning to my ZERO subscribers.

Evidently Feedburner is kaput. Thanks, Feedburner. You’d think they would have let me know in emails with giant red letters or something. Or they did and I missed them.

This can all be summed up in one word with a lot of letters: FUUUUUUUUUUUUUUUCK.

I am considering this a sign from Google that I should switch to self-hosted WordPress. I was afraid to do it because I didn’t want to lose subscribers, but it is hard to go lower than…ZERO.

Until then, I post everything Stimeyland-related on my Stimeyland Facebook page. It’s public, so I don’t think you even have to be on Facebook to see it, but it will just show up in your news feed if you are on Facebook and like the page.

Or Blogger probably has some sort of feed, so some of you may still be subscribed based on what feed you use.

Or just come by here and check for new posts. I hope to have this all sorted out by the end of the weekend. Just what I wanted to do this weekend. If anyone has advice or suggestions, I’d be thrilled to take them.

Blerg.

(confidential to Sherry: See? Like “motherfucker” but more downtrodden.)

The Lazy Woman’s Way to Blog

This whole going to bed near 10 pm is killing my blog. I write at midnight. It’s what I do. HOW DO YOU PEOPLE WRITE DURING THE DAY? IN THE LIGHT? WITHOUT WATCHING RERUNS OF TORCHWOOD ON NETFLIX?

Or that might be specific to me.

It is 9:24pm  and I am TIRED. This never used to happen to me. Fuck you, regular sleep schedule.

That said, I’ve only blogged…oh, dear lord, once? this week, so I found some more funny stuff from my kids to entertain you.

This first is a drawing by Jack from last year. I am under the impression that he thought school was hard work. Seriously. That little sketch (it is about an inch square) conveys more feeling than a billion words.

I should take this to IEP meetings.

Then there is Sam. At back to school night, I took a quick spin through his math classroom. On one wall, all the kids had written and illustrated rules. This was Sam’s:

This is a kid who needs to go on a bender.

Speaking of responsible people, next up I have Quinn’s definition and illustration of “responsible,” which is nothing like Sam. In fact, he took it in more of a “I was responsible for killing 16 people” kind of way instead of “I am responsible because I do my homework” kind of way.

“Some guy almost got squashed.”

I’m guessing that Quinn is the guy who is all, “Oops.”

Aaaand there you have volume two of “I’m going to let my kids blog for me this month.”

*****

Also, are your kids the worst? Because mine are. I have laid out eleven reasons why they are.