Simon has been taking swim lessons for about a year now in the Adaptive Aquatics program at our local Y. He loves his teacher and is doing really well. He’ll never be a competitive swimmer, but that’s not our goal. We just need him to be comfortable in the water and be able to swim enough to reduce the risk of drowning that is so common with autistic people.

We’ve been wanting to start George in swim lessons for a while now. We thought that George could probably do a group class with typical kids instead of needing the Adaptive program. George tends to have less severe sensory and anxiety issues, and generally performs well in classroom settings, so we didn’t foresee a problem. It took a while to get him into a class that didn’t conflict with his school schedule, but we finally got him into one and he had his first class a couple of weeks ago.

Well, he was SUPPOSED to have his first class a couple of weeks ago, anyway.

We got there and he was so excited. I showed him the pool through the viewing window and he started trying to take his clothes off right there in the lobby. I got him changed and we went to wait by the pool. We watched the kids in the class before his while I explained what they were doing. We met another little boy who was going to be in his class and his mom. Both were very nice.

The teacher was the one who taught Eleanor’s first class a couple of years ago, so I was happy to see her. When it was time for class to begin, I went to talk to her. I explained that George is autistic, but that he usually listens really well to teachers in classroom settings. (Listening to parents at home is another story, but I digress.) I normally don’t

She got this sour look on her face, like I had just farted at her. “You know, I’ve never had a good experience with an autistic child in a swimming class.” Uh, excuse me? She went on, “They just don’t listen. They keep jumping in.”

“Well.” I was trying to keep my calm. Really. There were other moms standing right there and they were listening to every word. “He actually listens very well. George, can you go ahead and sit down?”

As he was sitting down on the edge of the pool, he slipped and went in. He’s three. Shit happens. There was a platform there in the water, so he didn’t go in far, just enough to get his trunks wet.

Here is where I goofed up. It never occurred to me that this was going to be a problem, but it should have. For George, when your clothes get wet, you take them off. Period. End of story.

Which is what George immediately tried to do.

I explained to him that we these clothes on to go swimming. To George’s credit, he didn’t scream. He didn’t even cry. He was just sad. “Take shorts off. Take shorts off.”

The teacher had already started the lesson by this point. I asked George if he wanted to try again. He said ‘no,’ so we left. I wasn’t going to force him to stay in a situation where he was uncomfortable in his wet swim trunks. I also wasn’t going to subject him to a teacher who obviously didn’t want him there.

As we walked away, he turned and waved. “Bye-bye swimming!” I was crying at this point. As I was getting him changed, he kept saying, “I so sorry. I so sorry.” It broke my heart.

We left and got Happy Meals for lunch.

When I got home, I immediately e-mailed the swim program manager, who is the one that arranges Simon’s lessons at the same Y. I explained to her what the teacher said, as well as what happened with George when his clothes got wet. I asked if there was a spot in the Adaptive program for him (at least until he’s acclimated enough to be able to do a group lesson). Failing that, I asked for a refund of the $114 I paid for this class, because I sure as hell wasn’t going to send him back to that teacher.

A couple of days later, I spoke by phone to the Aquatics Director, so the boss of the lady I had e-mailed. She was very appropriately horrified and apologetic by what happened. While she didn’t go into detail, I understand that discussions with the teacher were had and the entire swim staff was going to be called in for a meeting on how to handle atypical kids and their parents; i.e, you are never to tell or even imply that they are not welcome.

She also explained that they do not currently have any openings in the Adaptive program, but they are working on training four new instructors and once a spot opens up, we can move George over. In the meantime, she said we could split Simon’s lesson time and have George use some of it. First 20 minutes for Simon and the last 10 for George or whatever. It was our 30 mins to use how we wanted and the money I paid for the class would be moved over as a credit against those private sessions.

I was very pleased with the outcome.

Last week, Adam took George to Simon’s lesson so he could watch. This week, the whole family went, since it was hard for Adam to wrangle both boys on his own.

George got dressed in his swim trunks and even got wet in the shower. He was very patient waiting while Simon started his lesson. Then he wanted to get his feet wet. Then he found the little rubber ducks they use in the lesson sometimes. He thought it was hilarious to throw them into the pool. He was so anxious to go in, I had to go get a float belt for him just in case he got away from Adam and jumped in.

Then it was his turn.

He. Did. So. Great.

He went right in, no hesitation. Laughing and smiling. He even did some kicks and tried to blow bubbles. The teacher, a wonderfully sweet high school girl, took him almost the entire length of the pool and back, with him giggling the whole time. Then Simon had another turn. Then George.

It was amazing. I was almost in tears.

It was a good experience for everyone involved, autistic or not.

A BIG HUGE EDIT COMMENT: Hoy shit, I already wrote about this, didn’t I? Crap. Well, that’s embarrassing. Still, both posts stand since this one contains an update to the situation. However, I must remember to review previous posts before writing again in the future. <runs away to hide>

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Simon has been taking adaptive swim lessons at our local Y for about a year or so now. The classes are 1:1 and he adores his teacher.

George is 3 now and we’ve been wanting him to start swim for a couple of months now. Given his social and verbal skills, we opted to try him in a general class instead of the private adaptive program. He had his first class today and it was a disaster.

George was very excited, but did a great job waiting for class to start. When I walked him over, I told the teacher (who actually taught my daughter years ago) that George is on the spectrum. I explained that he’s fully verbal, although he can be hard to understand, and that he follows directions really well.

The ONLY reason I told her this was in case there was an issue. I generally don’t hide their autism and I feel that people in authority, like teachers, need to have this information.

She proceeds to tell me that she’s never had a good experience with an autistic child in a swim class, that they don’t listen, and that they keep jumping into the water. She said this to me while the other parents were standing there, listening. I told her, again, that he follows directions very well.

When I had him sit on the edge of the pool, he slipped a little and went in. These things happen. There was a platform there, so only his legs and swim trunks got wet. I lifted him out and tried to get him to sit back down.

It never occurred to me before, but, for George, when your clothes get wet you take them off. So, he started trying to take his swim trunks off. I stopped him and he had a swim pull-up on anyway, so it’s not like he flashed anyone. I asked him if he wanted to go try class again. He said no, he wanted to take his wet shorts off and come home. He wasn’t crying. He wasn’t screaming. He wasn’t throwing a fit. He was just sad. So we left and went to go get Happy Meals. I started crying as we were walking away from the pool.

I’ve already emailed the swim director about this and have asked if there’s room in the adaptive program for him or for a full refund. Even if I can get him acclimated to having wet clothes, I will not have him back in her class again, where he was so obviously unwelcome.

I am so upset.

Today is the first day of April, or so they tell me. Things are a bit blurry at the moment.

Anyway, April is “Autism Awareness Month” and tomorrow, April 2, is “World Autism Day”.

I am sure that there will be blue lightbulbs for as far as the eye can see. Last year, if I’m not mistaken, places like the White House and the Empire State Building participated in the “Light It Up Blue” campaign from Autism Speaks.

This year, I am completely in the weeds with my book, with a couple of hard deadlines looming this month. I simply do not have the time to write again about why “Autism Awareness” is problematic, or why Autism Speaks is unsavory at best. So, I am simply going to redirect you back to my post from last April and then I am going to get back to work.

One last word of caution: Before donating to any charity or nonprofit, do some research. If you want to donate to an autism support network, then that is wonderful, but look before you leap. Consider donating to a local organization or school, instead of an international entity that is unwelcome in many autism communities.

Last year’s post: https://simondoesntsay.com/2016/04/02/acceptance-not-awareness/

George is three. And George is. . . George. He really defies definition. He’s sociable and friendly and has a funny sense of humor (for a 3 year old, anyway). Most people who meet him have a hard time believing that he has an ASD diagnosis. But . . . George.

George holds himself together really well in public or school settings. He very rarely tantrums or has meltdowns where non-family members can see him. At home, though, it’s a different story.

Generally, when he starts throwing a fit about something, we just remove him from the situation, he’ll take a couple of minutes to calm down and then come back completely fine. Logic works amazingly well with him. For example, if he’s insisting on X bowl, but X bowl isn’t available, then you tell him that he either uses Y bowl or doesn’t get breakfast. He’ll bitch about it for a few minutes, then cave. Hey, it works.

The other night, though, things got bad and I think we had a little bit of a breakthrough with him.

It was dinner time and we gave George first pick of which chair he wanted to sit in. He picked and took his spot. Simon sat in the chair next to him. George, who has his feet firmly planted in the “me, too” phase, immediately insisted he wanted Simon’s chair.

Well, George, no, Simon is sitting there. You picked THIS chair. This is George’s chair tonight.

He went ballistic. He knocked his chair over, was picking up toys off the floor and throwing them, and screaming. He stomped out of the room and stood in the hallways just howling. And it wasn’t a typical tantrum scream, either. I’m talking a sustained high-pitched scream like someone was cutting his arm off. It was . . . Intense.

I got a hold of him and took him to the couch, where I held him and patted his back while he kept screaming. Anytime I would speak, he’d scream and kick. He didn’t want to count, which is usually a good way to defuse him. He didn’t want the ABCs. I finally started singing “Puff the Magic Dragon” and he slowly started to calm down.

“I so scared. I so scared.” That was all he would say to me. “I so scared.”

That’s when it occurred to me that his emotions at that point were SO big and SO intense that he was scaring himself. He couldn’t control it and that terrified him.

Unfortunately, he didn’t qualify for ABA therapy at school and, as I’ve mentioned before, private ABA is nearly impossible for us to get for the boys. So, we’re flying solo on this, trying to figure out how best to help him.

He’s only three. That’s a hell of a burden for a little guy.

Recently, I talked about Simon’s apraxia and the challenges it can present sometimes. Play titties! Well, he’s got me stumped again.

This time, I don’t think it’s necessarily apraxia, but rather some connection in his mind that makes perfect sense to him that I’m just not getting. Here we go:

Simon likes yogurt. It got to the point where I was just buying the big tubs of strawberry greek yogurt for the kids since it was cheaper than buying tons of individual one. Right?

Well, a couple of weeks ago, the store had some Chobani yogurts on sale, so I bought some for me. FOR ME. Mine, damn it. I got peach flavor. Back off, kids. “Oh, Mother, you are in such denial. We shall eat all of these yogurts and there will be none left for you.”

At home, Simon immediately grabbed one and handed it to me. “I want water bottle.” Say what now? Here, have a yogurt.

He’s now refusing to eat the yogurt from the big tub and will only eat Chobani yogurts. Whatever, he’s eating. Here’s the thing though…

He can correctly tell you every flavor of yogurt we have, except for peach. Peach Chobani yogurts are “water bottle yogurt”.

For example: “Here, George, you get raspberry. I get water bottle.”

It only happens with peach as far as I can tell. And I’m pretty sure it’s only Chobani brand, although I’ll test that at the store on Friday.

Water bottle yogurt. I have absolutely no idea what the hell this means.

No, really, it is. February sucks, at least around here. Especially this year.

There are 20 weekdays this month.

The boys only go to school on Mondays, Tuesdays, Thursdays, and Fridays. So, that brings us to 16 possible school days.

There is a three-day weekend where they have a Friday off. Down to 15 days of school.

(It also bears mentioning that they had Monday, January 30th, off, too. So there were only 3 school days the week that February began.)

There is a full week off for mid-winter break. Down to 11 days of school.

Then, to make matters oh-so-much-better, we just had two snow days earlier this week. Down to nine days of school.

Just nine days of school for the boys this month, barring any further illness or weather related closures. (By the way, I’m still counting the day last week where I had to pick them up early because George was sick.)

Nine days of school for Simon who is so routine driven that this is throwing him into a tailspin.

Nine days of school in this month that simply will not end.

 

ninetimestext

Fun With Apraxia

I had originally planned to title this posting something completely different, but was afraid that search engines might lead some unsavory individuals to this blog. You’ll see what I mean in a moment. For now, we’ll just call this ‘Fun With Apraxia’.

With his apraxia, as I’ve mentioned, it’s sometimes very difficult to understand what Simon is saying. He’s very deliberate with his speech, but he just can’t get the words to come out properly.

For example, over the summer, he was walking around saying, “I want trainsick. I want trainsick.” It was very obviously ‘trainsick’ and he would get really frustrated and cry when we didn’t give him ‘trainsick’. It wasn’t until weeks later when he grabbed my hand, pulled me over to the snack cabinet, said “I want trainsick”, and pointed at a box of… Triscuits. Trainsick = Triscuit. Alrighty then. Gotcha. Have a Triscuit, my son.

Fast forward to shortly after the school year started. Eleanor brought home one of those Scholastic book order forms. Remember those? I loved those as a kid!

Anyway, Simon was sitting on my desk looking through the catalog and started pointing at random things and saying…

Okay, folks bear with me here…

I’m still laughing about this…

“Play titties.”

He was very excited about the ‘play titties’. He kept repeating it over and over again as I rolled on the floor howling with laughter. Finally, he moved on to other things and I began to breathe again.

This continued to happen periodically, but not always with Scholastic book orders. He’d be reading something and would suddenly burst out with “play titties”. We never could figure it out. I even asked George’s speech therapist if she had any ideas and she was baffled, too.

Until a week or so ago. He was, once again, looking at a Scholastic order form and started pointing at something. “Play titties! Play titties!” I looked at what he was pointing at and something finally clicked for me. I grabbed a notebook and wrote a word. I showed it to him and he beamed. “Titty!”

img_0551

 

Activity = titty.

Play titties = play activities

I cracked the code. I figured it out. I spent the next couple of days charging around the house, screaming “play titties!” at random times.

It has become my new battle cry.

“PLAY TITTIES!”

 

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