Hey everyone! This week I moved my blog to www.thisautismlife.com. Hopefully it’s a little easier to navigate. This week’s post is on how hard it can be having a sibling with autism. Our W is such a trooper! You can read this week’s post here: http://thisautismlife.com/bittersweet-moments/
To say that J has a volatile relationship with numbers would be an understatement. J and numbers have a long and complicated history. Numbers were among the first words J picked up in the early years while we were still struggling with speech. J could pick out numbers patterns and knew most of his single digit subtraction and addition facts pre-K. J had an obsession with numbers. He loved numbers. But at around grade 1 / grade 2, he started to develop strange fears about numbers.
He’s been living with number phobias ever since. The ones J deems “tainted” or “threatening” change every few months. Right now, one of those numbers just happens to be 142.
J also just happens to keep track (and numbers) every single day of the school year. That way he can keep track of every single catastrophic event (in J’s eyes, anything that happens unexpectedly is a catastrophic event) and which day (aka NUMBER) it happens on. My theory is that’s how some of the number phobia starts. It at least explains a piece of it.
J has been dreading the 142 day of school for about a month now. I made an appointment weeks ago with Dr. T, J’s therapist, and they talked about strategies he could use to get through the day when it came around.
I used the Social Thinking Language that J’s speech teachers have really been trying to enforce over the last few years, the idea of big problem (near crisis) vs little problem (a glitch).
J (and a lot of kids on the spectrum) have a hard time figuring out that most things in life fall on a spectrum. I think this has to do a lot with the faulty switches in their brain that are rooted in anxiety. To them, either something’s a threat, or it’s safe. Either something’s good or it’s bad. It’s that cave man protective skill. J’s brain can’t slow down enough (naturally) to think that there might be different and varied approaches to looking at the world. Or that most things we see every day aren’t big problems (we don’t get earthquakes or tsunamis every day). Most things are little problems, like a “glitch” (running out of milk, getting corn stuck in your teeth, you know, annoying, but not life-threatening). There’s a great link for the Social Thinking chart explaining glitches here.
Up until the last year or so, all problems=big problems.
Will all of that positive narrative we had been building the last month, I felt J and I were ready to face this week. J was feeling confident in his anxiety strategies for handling the “bad number.” Then Monday came, four days before D-day, and I wasn’t sure we were even going to make it to the anticipated apocalypse.
It started with Monday morning drop off. Monday was French Fry Day (another phobia for J—he’s deathly afraid of French fries) and so Steve had packed a bag lunch for J the night before. For the first time in a very long time, we were ON TIME. I wanted a great start to the week, especially with 142 coming up, and we were off to that great start, until I drove up to the school and J asked, “Where’s my bag lunch?”
Crap! I thought. “I’ll bring it sometime this morning,” I said. My mind immediately started spinning on how I was going to pull this off. Would I have to be late/cancel my 9:00 am appointment? I’d have a little time to squeeze after. But would it be enough time before lunch? Would he be a hot mess of anxiety all morning long until it got there?
“When?” J insisted “When are you going to bring it?”
“Sometime before lunch.” I said, because I was still trying to figure out the logistics in my head.
“When before lunch?” I could see the anxiety stewing already. The shaking in his hands. The way he nods his head emphatically, demanding an answer.
I let W out of the car and watched her dash into the school. “Okay, we’ll drive back home now, and you’ll be a few minutes late.”
J hates being late, but I think the prospect of confronting a tray of fries in the lunch line and French fry anxiety trumped the being late anxiety. We got home, got his lunch, and got to school. Forgotten lunch, just a little problem—a glitch. Something I needed to remember too.
Shortly before pickup, I received a text from J’s para that I might want to pick up J early. His shoelace got caught in the pedal of the stationary bike he uses daily for a brain break, and he got into a small panic attack because he couldn’t get his foot unstuck momentarily, but it was enough of problem that it took him a good five minutes to calm down after it happened. But by the time I got there, he had pulled himself together and was pretty proud of himself for doing it. Again, small problems—a glitch.
During track practice after school, there was a mix-up on the 4 mile route. The pack J was running with turned around about the 3.5 mile point. J didn’t know where he was going, and so he turned around with them. But, by the time the coach and I caught up to them, the coach told them that they had to run all the way to the gas/station and stop sign. J was LIVID. J didn’t want to turn around run and head back for the additional ½ mile or so and then turn around again to go back to the school. His mind was fixed on the return trip. He told me he hated me, and then he told me all the things he hated about everything else in the world, and 142 came up again—all during the run back for a good mile. Finally I said, “That’s enough. If you make it to the school without complaining, that means you will have handled 2 glitches today. The shoelace glitch AND the route mix up.”
For some reason that clicked with him. And he made it back, without a peep.
Monday was crazy and full of glitches but I really think it helped us prepare for the bigger anxiety a few days later. Monday J was able to work through all the small problems that came his way, which gave him the confidence to use his coping skills and handle 142 in the way he needed to. And he did.
Thursday came and we made it through the 142 day of school with no problems! Even with speech cancelled that day (J hates it when people mess with the schedule) He had made it! He got ice cream at DQ for handling it, just like we promised him last month when the infamous 142 started showing up in J’s daily conversations. With J, food always works well as an extra motivator.
“142 isn’t a monster,” J explained to me Thursday night. “It’s just a number” he said shrugging. “Just a glitch. It comes and goes. It won’t last forever.”
And just like that, 142 came and went without incident. Not a problem at all.
Two weeks ago J and W were in the middle of DSW, patiently waiting for me to decide between five different variations of the same white sneaker.
I walked down the aisle going back and forth between the shoes on display, while the kids dragged their feet behind me.
“It’s lunchtime mom, I’m hungry,” said J. It was actually way past lunch time. It was 2 in the afternoon. I knew he was anxious, but I knew I still had probably 15-20 minutes until we were in the pre-meltdown zone. The kids had a snack before we left, which was how we gotten to this point, but J has ideas about lunch and what it should look like—a steaming hot blue box of Kraft macaroni and cheese in a bowl with Parmesan cheese on top. I didn’t have this flexibility to push lunch until 2 pm two or three years ago. Two or three years ago, lunch time was at 11:40, no matter where you were. The world stopped at 11:40, and if you didn’t have that mac n cheese in front of J, you’d have an epic meltdown.
“Why don’t you just choose one?” W asked, clearly done with the whole ordeal. But I couldn’t, because I’m the type of person that takes forever to make a decision. Having five options doesn’t help the situation at all.
The store was packed. It was a holiday weekend. Holiday weekends in Fargo mean Canadians come down to shop too. Mix that up with all the moms who take their kids shopping because they have to entertain their kids on a day off, and shopping can be a nightmare. My kids weren’t the only ones having a miserable time.
J had resigned himself to sitting on one of those little stools—the ones with the slanted mirrors designed to let you look at your feet—and W had convinced me to let her have the phone (when I got home, I discovered that there was a photo booth’s worth of selfies on my phone).
Then, four or five aisles down—close to the men’s section, we hear this really loud, obnoxious, snappy, “Mom, Mo-om, MOM!”
I didn’t look over to see who was yelling for mom—but it sounded like a teenage girl. At first, it sounded like a rude teenage girl, trying to boss around her mom, but as she kept calling for “mom” it seemed her behavior could be because of other things. It was as if she didn’t realize she was being that loud. Maybe she had autism, Down’s syndrome, or some other developmental delay. Maybe she was just a rude teen. It didn’t matter. Both mom and daughter seemed to be having a hard moment. It happens to the best of us.
My kids didn’t flinch. J was kicking the stool absent mindedly, W was zombied-out with my phone. But there were two other ladies, in their forties, in the aisle with me, and it bothered them. But they didn’t go over to help the girl. They just started to giggle and then squawked, “Mom, Mo-om, MOM!” to each other.
I hate to admit this, but I didn’t do anything. I wanted to say something to those ladies but I didn’t. J laughs at things when he isn’t comfortable, so I get it. But these women were older. And I’m guessing more socially savvy than my autistic son. After a minute or two, we didn’t hear anything from the teenage girl a few aisles down. My kids were at their breaking point with the shopping trip, and I decided to leave before we had a loud outburst of our own. I still hadn’t made a decision on shoes.
On the car ride home I had a million questions (and lots of guilt) running through my head. What should I have done? Do you say something to women just a few years older than you when they’re being inappropriate? I know there are social rules about correcting someone older then you. Do you say something when it’s not your kid or your business? Maybe I was making the whole thing up, my reasons for the teen’s behavior, maybe it was just a really rude girl talking to her mother. But still, squawking and laughing is inappropriate. I’m guessing “MOM!” was having a hard time no matter what the circumstances were. I should have said something. When J was in the full fledge autism toddler stage, always in a tantrum puddle on the floor in some public place, and the rude older ladies would inform me of all the wrong things I was doing as a parent, all I wanted was someone to say something. I wished someone would have stuck up for me.
This first week of April ushers in Autism Awareness month, and with Autism Awareness month comes all sorts of things. The lists of autism symptoms, the statistics, and autism stories will be all over the internet. You may see buildings downtown “lighting it up blue” to show support and awareness. Yes, it’s important to be aware of autism, its symptoms, especially if your child or a child you know seems to be on the spectrum. Yes it’s important to know about autism so that you can interact with and help those on the spectrum. Those things do help. But as a mother of an autistic child, the thing I’d love the most would be an increase in kindness. You don’t have to know anything about autism in order to be kind.
We’ve had a blue light on our porch since mid-February, not for autism, but because people around us in our community have been struggling for very different reasons. The whole city of Fargo has had a blue light porch vigil to show support for an officer shot and killed in the line of duty. The community wanted to show support for his family and his fellow officers. People wanted to help. It’s now April and the blue lights are still sprinkled everywhere around the city. It’s been absolutely amazing to see the ways people of have reached out with kindness in ways beyond the blue lights.
Blue lights. Blue lights for officers and blue lights for autism. Two very different reasons. Blue lights for me now are a reminder that we need to be kind, gentle, and supportive. People hurt at different times for different reasons. It reminds me how fragile we humans really are. We need to be there for each other.
We don’t need rude laughter, we don’t need squawking. No matter what the nature of the hard thing is we’re going through.
I’ll never know that mom and daughter’s story. It doesn’t matter. I don’t have to. It’s not my place to judge or make assumptions. Next time I have a DSW moment though, I think I know what I’ll say. Next time I’ll open my mouth and say, “let’s be kind.”
At least, that’s, what I hope, I’ll have the courage to say.
The Messy Art of Parenting Autism 