Sixth place out of six, that is. Because sixth place is still worth something.
Don’t get me wrong. I grew up in a world without everyone getting a trophy. You had winners. You had losers. I played basketball (very poorly), and if I was lucky, they would let me in for the last minute or two of the game, when my playing couldn’t affect the final score. I was one of the official bench warmers. And I was okay with that because I knew I wasn’t good at it. But I tried. I didn’t expect a reward for trying. I would skip the award dinners because, well, I wasn’t getting an award, and the dinners weren’t really that great.
But that’s not the same for Simon.
Simon is in Special Olympics. This past Saturday was his bowling tournament.
In Special Oympics, everyone is included. Everyone plays.
Some of the kids there can’t handle crowds. Some can’t handle waiting. Some can’t handle noise. Some can’t handle sitting still. Some can’t walk. Some can’t speak.
And that’s all okay.
Because it’s Special Olympics.
The pledge they recite before the games begin is always the same:
“Let me Win. But if I Cannot Win, Let Me Be Brave in the Attempt.”
They are all brave.
They push past what makes it hard for them. Some of them wear special noise-cancelling headphones. Some of them roll up in their wheelchairs and push the ball down a ramp. Some of them need to have a coach or assistant down in the bowling area with them. But they do it. And they’re proud of doing it. And they have fun doing it. They have fun being involved. They have fun competing. They have fun knowing that they are being like every other kid out there – win or lose, they are playing.
So Simon got sixth place out of six. And he stood there, tall and proud, while they put the ribbon around his neck. And we stood there, tall and proud and taking pictures, knowing that he made it through another tournament, through all the things that normally would bother him, and through two hour of focus.
I’d like to begin by thanking the school for being kind enough to give the kids a whole week off. A week of unstructured insanity. Three days without school and without Thanksgiving, so that kids who are totally focused on Thanksgiving get to spend those three days talking about it over and over and over again.
Then I’d like to look at all my Tuesday failings…
First: I left Simon unsupervised for a good five minutes at the library. Now, when I say unsupervised, I don’t mean alone. No. He was lying on the floor, reading the book he wanted to get in the children’s section, and I was sitting in the rocking chair about five feet away. I had books of my own I was going to check out, and I was distracted. I didn’t watch him every second of those five minutes. I just looked up to make sure he was still there, still happy, and not getting in the way of any of the other kids in the area.
And that’s my mistake.
I should have been watching both him and the other kids. Because while my eyes were turned away, one of those obnoxious little snot-nosed thieves stole Simon’s Blue’s Clues notebook!
Admittedly, he didn’t notice either. He was too engrossed in his book, a board book with bright colors that has a number of different animals in it. He’s borrowed it from the library at least a dozen times now.
So after a search of the area, with my loud “Do you see your notebook anywhere, Simon? Where did your Blue’s Clues notebook go?” (foolishly hoping a parent would notice their child had run off with it), we gave up, checked out our books and immediately came home so that I could grab a new notebook from its hiding place in the closet where we have a secret stash for moments like that.
Second: I let Simon talk too loudly in the dollar store. Well, maybe it wasn’t really too loud. But it was pretty loud. We got a lot of stares. But it *was* the dollar store. We’re not talking about high quality items or a generally upscale shopping experience. And it wasn’t that bad for most of the store, although he definitely shocked a few people when he kept telling them that the front door was big enough (Winnie the Pooh getting stuck at Rabbit’s house).
It wasn’t until we were in line that he started getting really loud and really echolaliac – yes, that’s a word because I said it was.
In line, with the cashier looking on, he told me repeatedly that we needed to go hide in the shower. I wouldn’t say she stared, but she did look like she might be interested in where the rest of that conversation was going. I went with the TV-talk, telling him that we didn’t need to go play hide and go seek and didn’t need to hide in the shower (Max and Ruby), but I’m not sure if she believed that was where it was going.
So if you happen to be the cashier from the store who was giving me funny looks while I paid for my items, please know – really, I swear, it’s from TV.
Third: I listened to seriously inappropriate music in front of Simon. I try to avoid doing that. I know that he likes to repeat words. And I don’t want to write those words in this blog, either. So I’ll just leave it at this: yes, I like my Lords of Acids station on Pandora. And, no, Simon hasn’t repeated anything from it.
I watched a lot of the Odd Couple when I was growing up. What that says about the parenting in my house, I won’t say. But I will say that whenever people make an assumption, I immediately think of Felix.
I got to think of that about a week ago when we took Simon out to a gem and mineral show. They had all sorts of cool stuff: fossils, meteorites, stones, gems, finished jewelry, and some people from various organizations showing off how to do cool things with all those bits and pieces.
One of the people doing demonstrations was a woman who was showing off how to polish up stones. She was talking about how to make facets, and she began going into the math of it: how many turns on the dial did you need and some other stuff I should remember but don’t.
She asked a math problem. It was basic multiplication, trying to figure out how to select the right number on the dial.
Patrick answered, and she semi-chastised him, telling him that she was asking Simon because it was a math problem appropriate for a 5th grader.
We blew it off, and we wandered into the showroom to look at all the pretty things to buy.
But it stuck with me, and it soured the day a bit.
First off, Simon isn’t in the fifth grade. He’s in the seventh grade, although he was held back and technically should be in the eighth grade. That’s neither here nor there, though. The point is, he’s older than the supposed “correct” age for the question.
Second, why would a random stranger assume she knows what level my son is at math? Or what level any child is at math? For all she knows, he has dysgraphia and struggles quite seriously with math. Maybe he has severe anxiety, and even asking him a math question would give him a panic attack.
Now, I’m not suggesting that people should all stop interacting at the risk of insulting each other. But I am suggesting that perhaps sometimes the parents know best, and if they jump in and answer a question instead of letting their child do it, perhaps they actually are doing it for a reason. Perhaps assuming that the child is capable of doing something just because you perceive the child to be the right age or the right height or the right whatever…well, maybe you shouldn’t assume. Because we know what happens what you assume, thanks to Felix.
Because it’s one of those days, I decided that I should go ahead and force myself out of bed and to school.
Because it’s one of those days, I left school early to get coffee and sushi.
Because it’s one of those days, I had forgotten to tell Simon’s teacher that I’d be picking him up early, and so I texted her and warned her.
Because it’s one of those days, Simon (who didn’t know he had a doctor’s appointment) had been telling his teacher that Mom was picking him up to take him to the rodeo.
Because it’s one of those days, I picked up Simon to take him to the doctor for his yearly check-up and his physical for Special Olympics, and he wanted his teacher to see Mom’s black car.
Because it’s one of those days, at the nurse part of the visit, I found out he is only two inches shorter and fifteen pounds lighter than me.
Because it’s one of those days, I didn’t realize that I was jinxing myself when I said, “Wow, he’s never done that before” when he let the nurse take his temperature orally.
Because it’s one of those days, it wasn’t until we went into the room to wait for the doctor that I realized the crotch of his pants had split and his blue underwear was showing through.
Because it’s one of those days, I didn’t have to feel like a bad mother for not noticing his pants had split because it was time for Simon to get changed into a gown.
Because it’s one of the days, the wait for the doctor had been going on for seemingly forever when Simon announced, “I have to go to the bathroom.”
Because it’s one of those days, a second after Simon made the announcement, he began peeing…on the floor…through his underpants and the gown.
Because it’s one of those days, there was a lot of pee. A lot of it. Like the whole floor was covered in it.
Because it’s one of those days, even though I told him to stop peeing, he kept peeing. And peeing. And peeing. And peeing.
Because it’s one of those days, I quickly pulled off his soaked socks, threw some paper towels on the floor, and dragged him to the bathroom to finish peeing (assuming there was any left in him).
Because it’s one of those days, the doctor walked in as I was trying to toss paper towels all over the huge puddle of pee, and I had to warn her not to come into the room very far because in about two steps, she would have slipped and fallen, and that might have been a bad way to start the visit.
Because it’s one of those days, I had to repeatedly explain to the doctor that no, this wasn’t normal behavior, he doesn’t pee on floors everywhere we go, and, honestly, he is pretty well potty trained.
Because it’s one of those days, I had Simon show off by saying dog in four languages (well, five if you include English) to the doctor since I kind of felt I had to prove that he doesn’t just go around peeing on the floors.
Because it’s one of those days, after the doctor left the room to fill out his Special Olympics paperwork and he needed to put his clothes back on, it was full-on meltdown time because he did not, I repeat, did NOT want to go home without underwear.
Because it’s one of those days, it took me a minute to realize that he had to wear his pants WITH THE HOLE IN THE CROTCH without any underwear.
Because it’s one of those days, the whole of pediatrics got to listen to Simon scream, at the top of his lung capacity, that he wanted fresh underwear.
Because it’s one of those days, I considered taking him to Target and just buying some new underwear for him, but then I realized that would mean walking through Target with him in ripped pants and his balls hanging out (literally) while he screamed that he wanted fresh underwear.
Because it’s one of those days, I decided against taking him to Target because we would probably wind up being arrested for public indecency, and I convinced him that we could go straight home and then he would have fresh underwear.
Because it’s one of those days, since we’ve gotten home, I’ve had a hot bubble bath and some Ben & Jerry’s ice cream.
Because it’s one of those days, don’t you judge me.
I don’t want to, and don’t mean to, take away from the tragedy that happened in Lake Jackson on the 5th. A five year old girl was hit and killed by a truck. It was a freak accident. The girl was walking behind her father. She stopped and got down to look in a storm drain. She was too low to be seen by the driver.
I cannot image the pain that goes with having your child die. Especially in such a sudden way. Especially in a way that can lead to you blaming yourself.
Think about it: you turn your back for half a minute. You miss seeing that your child has gotten down on the ground. You don’t see that your child is in danger. It takes almost no time at all.
You will potentially feel that guilt for the rest of your life, I would imagine. I could only think that it’s nearly impossible to erase the feeling. Even though it isn’t your fault, even though it was just a momentary lapse – one that every parent has every day, multiple times, probably – it is the one lapse that will never go away. Never be forgotten.
This is a fear of so many parents and caregivers of those who love someone with autism.
It’s a real fear, a daily fear, a constant fear. A terrifying aspect of autism.
Children, and adults, can decide to run for no reason or for some unknown reason.
Simon is afraid of birds. Hearing birds, seeing birds, sensing birds…that can set him off. We have a handicapped tag to make sure that, on days that when the birds are converging, we can park close by and don’t have to worry about him making a break for it across the parking lot.
But not everyone can do that.
And not everyone can hold onto the person that wants to run. Or keep an eye on them 24/7. There are lapses. There are moments. And they are the scariest parts of the day.
Yesterday, Simon hit a limit. It wasn’t something that would bother most people.
Yesterday, Simon had to wait to go out to dinner. He’s bad at waiting. Very, very bad at waiting.
Yesterday, Simon melted down. He melted down hard.
He hit a point of no return, and he couldn’t stop himself. None of the usual things worked; he would not be distracted, he would not calm down.
Instead, he lashed out. At Patrick.
He attacked him as hard as he could attack.
He scratched. He pinched. He dug in his nails.
Patrick tried to restrain him, but each time he released Simon’s hands, Simon went for him.
Simon seemed to relax a little, said he wanted a big hug.
Went in for a hug, changed his mind half-way and began pinching Patrick’s stomach and sides.
Patrick tried to get out of the way, multiple times.
It didn’t work.
Finally, Patrick was able to sit and lean back far enough that Simon couldn’t reach him.
I got in the way, Patrick got out of the room, and since Simon has never scratched or pinched me, I hoped it would work out okay.
I turned out all the lights, got him to calm a bit, sat down and wrote out sentences about what was going on and what was happening.
After we’d finished a full page of sentences, he had calmed down to just crying.
Patrick had gouges up and down his arms. Slices in his skin, bleeding. The worst ones were on his hands where there were flaps of skin.
When Patrick came back into the living room, Simon was calm enough to apologize.
Simon was calm enough to go to the bathroom, to put on his flip-flops, to go to the car, to go to the restaurant.
Simon was calm enough to eat. To drink his orange juice. To come back home. To go to bed.
And everything was normal again. Like it never happened.
Except, of course, it did. And it might happen again.
School started on Monday!
Simon has been happy to be back on a schedule, and every day, he comes home and tells me that he’s going back to school, and I remind him that he won’t go back until the next morning.
Monday was good.
Tuesday was good.
Wednesday. Well. Wednesday was.
He got home, and everything seemed to be running smoothly, but then for no reason I could tell, something changed, and he began getting upset. He wanted dad home. He wanted dad home now, and nothing I could say would make it better.
Okay, I thought. Let’s try to go for distraction. (Seriously, sometimes I think that distraction is my best friend, although when it comes to ADHD, it’s my worst enemy.)
“Do you want to go run errands?” I asked him.
Oh, yeah, he was all in.
We went to the thrift store across the way.
And he was not all in. Not even close to partway in. He didn’t even have a toe dipped in there.
Instead, as we walked into the store, he began demanding dad. Loudly. Repeatedly.
He got more upset the longer we were there. I tried to get him to hold off, asked him if he still wanted to go anywhere else, told him that dad would be home when we got home. No dice.
He screamed more. He cried, tears streaming down his face.
Time to leave.
We got to the counter.
We had to wait.
Simon really, really, really did not want to wait.
He escalated in decibels, and he added in this little shrieking thing he does.
Now, I’m going to go back a bit.
When we were on vacation, I managed to pick up a cold. It didn’t really hit until the last day, but since it has hit, I’ve been congested and coughing, and I’ve had a sinus headache every day. It normally starts out hurting, and by about lunch time, it has gotten worse, and by dinner time, it’s turned into a migraine. What I’m trying to say is that the noise was bad for the people in the store, but I’m going to say it was slightly worse for me. I couldn’t go to another area of the store and ignore it, and I couldn’t stop it.
I tried to calm him down, like I had been doing. I gave him pressure and hugs, I rubbed his back, and I told him he was doing good at calming down (even though he wasn’t – but for some reason, telling him that he is doing it seems to make him do it sometimes).
He began slamming his hands down on the counter, shrieking.
I pulled his hands back, told him not to do it, and listened to him getting louder.
I considered leaving, but I had two things I really wanted, and I was seconds away from getting rung up.
No one said anything to me, but when I looked around, I saw the stares. Shockingly, people were not enjoying his meltdown. I had to balance what I wanted versus if I thought I was driving other people insane. It was a public place, I reasoned. And if I can’t get him used to going to public places and stopping a meltdown, then what will happen when I *have* to go somewhere and he’s having a meltdown?
I was going to try to wait it out.
I managed to pay with him only breaking free once more from a hug to slam his hands down on the counter. Then we were outta there.
I sent out a quick tweet, which showed up on my FB page, and I got a “sorry” and a frowny face.
I wanted to explain my tweet. And any of my other tweets when I say Simon is having a bad day or a meltdown or whatever else is going on that he (and I) aren’t enjoying.
I don’t mean the tweets to get replies of sympathy. I don’t want people to apologize for Simon – and me – having a bad day.
I’m really just trying to get out there and say, “Hey, this happens. Next time you’re at the store, don’t stare, even if you want to. Next time you’re at the store, realize that you aren’t enjoying the yelling, but neither is the kid – or adult – doing it. Neither is/are the parent/parents who are trying to help the person having the meltdown. Next time you’re at the store, have some empathy, not just sympathy. Next time you’re at the store, be aware why the other person is there, and why you might have to put up with something you find unpleasant. And, next time you’re at the store, if you hear/see this happening, why not run over to the person with a Starbucks gift card…”
Okay, so I didn’t make my post a day for the month because things got crazy, as usual, but I do plan on writing up some posts that didn’t make it, so expect to see a bunch more posts over the next few days.
But Autism Awareness month is over in another few minutes, and I just wanted to end it on a high note for anyone following me.
Today, Patrick needed to get his tire fixed. It blew out, and he’s been driving on the donut for long enough. Earlier today, while Simon was in school, we dropped it off. But we weren’t able to pick it up until Simon was home from school.
In the past, this has been a problem. We couldn’t go in one car and then separate out into two. It was too much for him; he didn’t understand why we did it, and he would invariably spend the five minute drive home crying and screaming for whichever of us wasn’t in the car.
We tried it tonight.
Told him that we were going to pick up Dad’s car. Told him that the tire had been fixed, but that we needed to drive it home. Told him that he could pick who he wanted to drive back home with.
And we went to pick up the car…
Simon did get stuck on the idea of the tire being fixed. He didn’t get the time in the statement, and he kept telling us that the tire was being fixed. We’d tell him again that it was already fixed, and that we were just getting it, but he kept saying it was being fixed…it was being fixed.
It wasn’t important. We let it go.
Then it came time for the hard part.
We asked him who he wanted to drive home with. He said Mom.
We explained, again, that would mean that Dad would be in the other car. He would follow us, and then we’d all be home together.
He insisted that he wanted to go with Mom.
So he climbed into the back seat of the Jeep, and off we went, with Patrick following.
And it was okay.
He kept telling me that Dad was following, and when we stopped at the sign as we entered the neighborhood, Simon turned around, saw Patrick in the other car, waved, and said “Hi Dad!”
Then we were home.
And everything was fine.
(Until he remembered that the dance was coming up again…but that’s another story…)
My way of sharing, with you, the thoughts, ideas, and experiences that we have in our life with our son.
Spend the month of April reading the highlights of my days (and sometimes nights).
Today I did something to make me feel like a bad mother.
I had class all day, and Simon had SIRE horseback riding tonight.
But this week has been a crazy week, I’m still trying to catch up from being sick and then going to College Station for business…basically I’m behind on everything. I haven’t written blogs, fiction, articles. I haven’t listed jewelry and books. I haven’t made jewelry and books. It’s been nothing but trying to get through each day. Obviously, a bit of a problem.
I didn’t go to his horseback riding.
I came home from school (after they’d already left), and I settled in, trying to move all my stuff off the counters, organize things from my trip, and, of course, do lots of writing. Like this blog.
Every time I miss one of Simon’s events or activities, though, I feel guilty. And I already missed his gymnastics class this week because I had a meeting at the exact same time.
Just a few minutes ago, he came home. He was happy, he was excited, he wanted a hug, and when I asked him if he had fun, he said yes.
My guilt? Totally pointless. He had gotten everything he wanted.
I know that lots of parents would probably feel guilty in the same situation, but would I feel as guilty if he was a typically developing kid?
Would I spend all this time beating myself up for “missing out” on things where he doesn’t even really care if I’m there to begin with? (Because, let me tell you, when it comes time to go horseback riding, I don’t even rank in the top three important things in his life. Number one is the horse. Number two is also the horse. Number three is still the horse. His parents? Yeah, we might come in around number nine or 10…)
Tomorrow is, of course, another day. April 2. Autism Awareness Day (as part of Autism Awareness Month). Please be sure to check back, and please don’t ‘Light it Up Blue.’ Walk in Red instead!