Simon was excited about Earth Day. He told me last night that it would be Earth Day tomorrow and that he was going to pick flowers. And apparently he did, as is evidenced in the awesome photo. He brought it home with him, and I’m not sure how/when they did it at school, but he brought it home, and it’s super pretty, I think. I’m framing it up and keeping it because it’s awesome.
That said, beyond that, this blog isn’t about Earth Day.
This is about what happens when things get cancelled at the last minute.
Today is Wednesday – the day that Simon normally goes horseback riding. He got home from school, we bundled him up in the car with a quick snack and some juice, and then we went to Sonic before horseback riding. (He is in a much better mood if he has dinner before he goes riding.)
It’s a long drive out there. About an hour if we’re lucky, an hour and a half if we’re not, and that’s when we’re using the tollway, which cuts down on time but costs extra. But it’s worth it.
Except that today, as we were eating our dinner at Sonic, my cell phone rang. I didn’t answer – it was a local number I didn’t recognize, and I don’t normally answer calls when I don’t know who it is.
Luckily, I checked it before we left Sonic.
It was SIRE, calling to let us know that because of some serious storms in area – storms that were producing hail and 70 mph winds – the lesson tonight would be cancelled.
She suggested we stay home and avoid the weather.
She obviously didn’t realize that we were about five minutes away.
So….how to handle the situation?
Simon is not good with change.
Simon is not good with it when something he wants is suddenly not his anymore.
Simon was really, really looking forward to seeing Kansas.
We went to SIRE. We let him use the bathroom, we showed him that it was starting to rain, and we were going to talk to the people there, but they were off, taking care of the horses. Instead, we explained to him, repeatedly, that the horses would be scared by the storms, and so there wouldn’t be a lesson tonight. We asked him if he wanted the horses to be scared, and he said no.
Then we left.
And he cried. He got upset. He was not a happy camper by any stretch of anyone’s imagination.
I told him it was okay to cry. It was okay to be upset. But he needed to get over it.
We took him “shopping” at some of the big box stores down the road. We wandered around, letting him get something for the drive and also giving ourselves a bit of a break before hitting rush hour traffic on the way home.
And next week, hopefully there will be horseback riding.
Yet another study has confirmed that the MMR vaccine does not, in fact, cause autism. This time, there were over 95,000 children involved in the study.
Think about that for a minute. 95,000 children.
The original study, the one that everyone believed so hard, had twelve children. 12. 12. A dozen.
Out of those 12, there were 8 children with behavioral symptoms that they blamed on the vaccine.
That’s the study that got kicked out. The study that was proven to have all sorts of problems. The study that was retracted.
But everyone believed it because it had 12 children.
So, let’s look at this just a bit more. People will believe a study with 12 children, but when you have a huge study – a study that is full of 95,000 children – well, that’s just not believable.
Yeah, that’s what I thought.
(And, for the record, Simon was showing symptoms of autism waaaaay before he had his MMR vaccine, in fact, before he’d barely had any vaccines. He was clearly not neurotypical, even under a year old…)
And other thoughts on someone else’s blog…
Abandoning Pretense wrote an awesome blog about what happens when her son got put on ADHD meds and how much the drugs helped him function.
Her statement is that she likes him better when he’s on the drugs, and she likes herself better when he’s on them because she’s in a better mood and able to deal with things better.
I get that.
But I wouldn’t say I “like” Simon better when he’s drugged.
I would say, though, that he’s happier when he’s drugged, and that makes me happier.
Like the blogger there, we also tried to avoid giving Simon drugs when he was younger. We fought it for years. He didn’t need them, we told ourselves. He’d be okay without them. Drugs are unnecessary. Drugs are a crutch.
But they aren’t.
They’re necessary. Sometimes.
I’m not saying that medication is the answer. But it is an answer, and in some cases, it’s the best answer. It’s like when you can pick “E” for all of the above.
We gave Simon everything we could, and it wasn’t enough. He still had melt-downs that he couldn’t control. He had anxiety that he couldn’t control. He got violent.
We started him on medication.
And things got better.
He was more relaxed. He seemed to feel better. He seemed to be able to enjoy himself more.
And, yeah, that made things better for us, but mostly for him. It’s not fair to withhold the medication from him, saying that he doesn’t “need” it.
We tried to stop it at one point, to pull it back, to reduce the amount of medication he took.
The difference was immediate. He went from having fun to needing constant redirection and constant reassurance. Anything that went off schedule was melt-down city.
We brought the levels back up, and he became himself again.
Yup, that’s what I said – he became himself. Because without the drugs, he couldn’t be himself. He had to be what his brain told him to be. His brain messed with him, made him anxious, made him upset. The drugs allowed him to get back to where he had been before. Where he could feel good, where he could feel “normal.”
So, no, I don’t like him better on drugs.
But I’m glad he’s on them.
As I mentioned, I attended the Alvin/Pearland Autism Conference this weekend, and one of the three session that I went to was about music therapy.
I wanted to learn more about it because while I’ve heard of it, I didn’t really know how it worked. I thought maybe it was just incorporating playing music/participating in music, sort of how equine therapy is about riding horses and using horses to get kids to do stuff.
And that was sort of/mostly right.
The woman who gave the session was extremely interesting and shared a ton of great resources – one of them that I’m going to link to here is Barefoot Books, which has a YouTube page with things I’m going to do with Simon.
But I thought one of the best things that came out of the session, for us, was the idea of “piggybacking” on songs to create things to help work with Simon. Piggybacking, as you can probably guess, and as you’ve probably already done, is to use an existing tune but change the lyrics to say whatever you want them to say. When Simon was a baby, for example, I would always change around lyrics to song to try to convince him to go to sleep at night. (It never worked then, FYI.)
The idea of piggybacking is that the new songs you create can help to work on learning, on language and speech development, on physical skills, on social skills, on sensory integration, and even on behavior.
I tried the first piggybacking song with Simon this morning.
I was attempting to sleep in, but Simon was bored or something, and so he kept coming in and trying to climb into bed and “sleep.” (Sleep when it comes to him hanging around in bed generally involves a lot of echolalia, demands for hugs, and some more echolalia.) To keep myself amused since I was awake anyway, I began giving him Eskimo kisses – you know, when you rub your nose on someone else’s nose. Well, Simon really enjoys that, and he also enjoys when I “catch” him because he has a bit of echolalia from a show that he repeats that says, “You can’t catch me! You can’t catch me!” and I always grab him and say, “But I caught you!”
So this morning, as he lay there repeating words, I gave him Eskimo kisses and sang, “I caught you with my nose, I caught you with my nose, hey ho the dairy-o, I caught you with my nose.”
Yeah, it was Farmer in the Dell.
But he giggled, thought it was funny, and would even fill in the words (and the tune) if I stopped singing.
Interesting, I thought.
Well, he’s still stuck on going to a dance.
It’s come up at least a dozen times today, and I’m sure it’ll come up at least a dozen more tomorrow.
I came up with another song.
Using London Bridge is Falling Down, I sang, “We are waiting for the dance, for the dance, for the dance. We are waiting for the dance, and it’s in May.” (I really, really, really hope that it turns out the dance *is* in May, or I might wind up renting out a hall to have a fake dance…)
The idea behind that song, though, was that I could substitute in other words. Like if he’s waiting for the school bus, we can sing, “We are waiting for the bus…it’ll be here soon.”
The first time I sang it to him, he kind of looked at me weird, but then walked off, not saying anything else about the dance.
Now I can sing it to him, and he seems to get it, or at least get that is going to be the response, and it calms him down a lot more than when I say, “Yes,” or when I tell him, “We’re waiting.”
Music therapy. It works. Maybe.
Okay, so today started way earlier than I normally like starting Saturday mornings. I was up at 6 a.m. to get out to Manvel for an autism conference. I am not a morning person. I’m also not an afternoon or evening person. And sometimes I’m not a night person. But I’m really, really not a morning person.
Two of the three sessions were great – the other was just good. I learned a lot, and I enjoyed finding out a lot about music therapy and thinking about how we might be able to get it into our school district.
But instead of writing about all that, I thought I would go ahead and write about something we did last week. We ran a Go Fund Me for Simon in order to get him a weighted blanket. And we raised enough to get two.
I’m going to write more about it later, but for now, I wanted to share a photo that gives a perfect example of why Simon would (I think) benefit from a weighted blanket.
This is Simon, lying on the floor with a bean bag on top of him. He had been getting upset again (when WILL that school dance finally appear?), and that was how he calmed himself.
His first blanket will be here next Tuesday…more updates then!
REALLY, I SWEAR, THERE IS NOT A DANCE AT THE HIGH SCHOOL.
THERE IS NO DANCE.
NO, NO SPECIAL OLYMPICS DANCE.
STOP LOOKING AT THE CALENDAR. THERE ISN’T A DANCE.
YES, WE WILL TELL YOU WHEN THERE IS A DANCE.
NO, THERE IS NO DANCE RIGHT NOW.
HONEST, THERE ISN’T A DANCE.
THERE’S NOTHING TO GET UPSET ABOUT. YOU DON’T NEED TO CRY.
(By the way, there is no dance, at least not yet, but apparently someone has gotten it into his mind that the flyer from yesterday about the parent meeting was about a dance and we are hiding this magic dance from him. Hopefully by tomorrow we can stop repeating ourselves…)
Let’s start with yesterday.
It was horseback riding time. And since SIRE will be part of a jousting event, his teacher decided to go ahead and have a jousting class. Because, you know, kids with swords on horses…what could possibly go wrong?
Okay, to be fair, nothing did. They were foam swords, and the kids got to remove rings with them and knock rings down and ride around and wave them. (The rules included not hitting the horses and not hitting their side riders. Pretty fair rules.)
Simon had a ball.
We were both exhausted. It’s about an hour drive each way, often more because of traffic. And it has been a long, long, long, long week.
But Simon loves it. He thinks it’s cool. He can tell you the name of his horse (Kansa) and what makes him walk (walk on) and what makes him trot (trot).
So we’ll be enrolling him in the summer classes. And in the fall classes. And in the spring classes next year, too. Because, well, it’s horses!
And then I crashed and burned after his lesson because my head was pounding, and when we stopped for dinner at Cracker Barrel, I foolishly sat where the sun could get at me. It speared my eye on and off for the whole meal, which is what brought the headache to full migraine status. Hence yesterday’s blog.
Now, today, he got off the bus, and the bus driver motioned to me.
Apparently, there had been a kid on the bus who had gotten upset over something – not specified by her – and the kid had been whining and crying and making noise at a really high pitch. The noises had been bothering Simon, and so she wanted me to know, in case he had a bad afternoon once he was home.
Well, he didn’t seem to be bothered by the kid on the bus. But he did read the flyer that came home from school, the one that said that there was a parent support meeting tonight.
“We go to the dance,” he told me.
“We go to the dance,” he told me, pointing to the flyer he read.
“It’s not a dance,” I pointed to it. “See? Parent Meeting.”
I think you get the picture. I’m really not sure why he decided that the flyer was for a dance. He kindly pointed my finger to the “Dickinson High School” and made me read it for him so that he could repeat it multiple times.
I finally got his mini-fit calmed down by sitting on the couch with him and by reassuring him that when there was a dance, we would let him know, and, yes, he could go to school tomorrow.
(And the parent meeting tonight was also good and successful, although a bit poorly attended, possibly due to all the lovely weather rumbling through tonight.)
Today was the Special Kids Day at the Galveston Rodeo!
Today was also the day that the weather forecasters were totally wrong (again!), and while they promised that the rain would hold off until the end of the events. Didn’t happen.
We got there by 8:30 because Simon’s teacher told us that the bus would be leaving the school at 8 a.m., and they expected to be there within about half an hour. I could have sworn that, in years past, it was more like 9:30 or 10 before the busses got there, but I gave up my morning coffee just to make sure we were there on time.
The parking lot was empty when we got there.
Lots of volunteers, standing around in purple and blue and other colorful shirts. Lots of cool stuff set up for later in the day.
But nope, not any sign of school children (or adults) with special needs.
Okay. We hung out in the car.
We got out of the car, stood over by the covered arena. Met up with the head of special programs for DISD who told us that she hadn’t even heard from the schools that the kids were on the way.
And it kept getting darker. And darker. And darker.
Then it started to rain, just as the busses showed up.
We had our umbrella with us, and we all got under the covering and into the seats.
Then it was time for waiting. And waiting. And waiting.
A lot of the busses had been delayed by the weather, so what normally started at 10 am instead started at about 11.
But it did start, and everyone did enjoy it.
There was roping, barrel racing, bull riding, all the stuff that had been promised.
There was, however, no carnival. No rides. No games.
The officials there decided to go ahead and bring the lunch into the kids instead of trying to herd a group of kids through the rain to the other covered building.
That was when we decided to go ahead and leave. Simon never lasts much beyond the rodeo – he has a really hard time transitioning back to school after trips – and so we let his teacher and his aides know that we were going to go ahead and take him out.
We headed to Sonic, got him a grilled cheese, and ran some errands.
Simon did have a bit of a rough day after that; I think the change in schedule really messed with him, and the weather was heavy and oppressive and definitely didn’t help any of us.
Nonetheless, a good time was had by all, as I think is clean from the pics included throughout this blog. 🙂
Our current schedule for Mondays is that Patrick comes home early to get Simon off the bus because I have class until 3:50. Then I come home after class, and we normally hang out, hit the store, whatever. Today, I got home, and Simon immediately let me know what tomorrow is: the rodeo!
He loves the rodeo.
It’s the Galveston County Rodeo, and every year, they offer a ‘Special Kids Day.’
It’s free, and it’s awesome fun. They have a short rodeo, complete with barrel riding, bull riding (teenagers trying to win scholarships – it’s very unique to see a high school boy trying to hang on to a bull for 8 seconds…especially for those of us from NJ who never thought of bull riding as a high school sport), and roping. Then the kids get free rides on whatever they open up in the carnival, and they get to play games that they always win and get little prizes. Simon normally gets at least one stuffed animal and hops on the merry go round.
So that’s where we’ll be tomorrow, bright and early.
Simon will hop the bus to school, eat his breakfast, and then hop the bus to the rodeo.
We, meanwhile, will eat our breakfast and then head to the rodeo and meet up with him and the rest of his class. Hopefully the rain will hold off until the afternoon!