Life, Autism, Disability, and More

Tag Archives: abilities

25409223 Dishwasher after cleaning processSo there’s been a lot of chatter online about having your kids do chores – “age appropriate chore” charts are popping up all over. At 8, your child can…and at 10, your child can… Except that isn’t always true. Age appropriate isn’t always appropriate. Instead, it really needs to be child appropriate.

In our case, it’s Simon-appropriate.

Yes, Simon has chores. He may only be three or four mentally, but even at three or four, kids can do a whole lot of stuff, especially if you ask them to. He can carry the laundry from the dryer into the bedroom to be folded (although he isn’t good at folding it…yet). He can put his laundry away. He can let the dog back in when she’s in the backyard. He can put his dishes in the sink. He can get out silverware and plates, with some direction.

And recently, we’ve added two new chores to the list. They are animal related. First, he now has to bring the dog’s food dish to the laundry room so that she can get food. Second, he has to refill the animals’ water dish, although we give him the water in a cup so he can just pour it in.

When we started with the water, I was a bit nervous. I wanted him to do it – I prefer to try to push him instead of just keep things at a status quo – but I could just see the water hitting the ground and making the kitchen a slippery mess pretty easily. But imagining it doesn’t make it so any more than not imagining it keeps it from happening. So I filled up the cup, showed him how to kneel down and pour the water, and then stood back and let it go.

He did great. He filled up the water dish, and now if I spot that the bowl had gotten empty, or close to empty, I can fill up the dish and call him over. He comes over, generally happy about it, and fills it up.

Honestly, I think he enjoys having chores to do. For the most part, we let him do his own thing. He watches tv, plays with toys, colors, draws, and does whatever he wants to do. He only ever really gets cranky and tries to refuse when we tell him to put his laundry away, but if we tell him that he has to do it, he may stamp his foot or make noise, but he does it. When it comes to the pets, though, he really likes them, and I think that he likes taking care of them. He pets the cats and the dog, calls them by name, and even named the newest addition (Sammy).

I don’t know if any of this is a sign of how he’ll do when he’s older and ready to transition to the “real world,” but it does make me feel better to see that he can learn to do simple tasks. Who knows? Maybe he’ll wind up cleaning up at a kennel or helping out at a vet’s office. We’ll just have to wait and see…and give him more Simon-appropriate chores to do.


Respect-BannerDon’t get me wrong, I know that I’m going to find insensitive people just about everywhere. But I didn’t expect to find them in out-patient therapy. (If you want to know why I’m currently in out-patient therapy, you can check out my other blog about my mental issues…)

Anyway, so the other day in therapy, while she was talking, one of the other women – let’s call her Zelda – said that her brother was Autistic, and he was around her age. She’s about 60, ready to retire, and he’s living at home with their parents still. She pointed out that, at the time, they didn’t have much they could do to help him, but she felt like it was better now. She commented that he was the family’s project. I thought about talking to her then, but I decided against it.

So the topic was put to bed, and no one else talked about it…until…

Something came up, and she asked me, before therapy started, about whether or not I had any children. Of course, I said, yes, I have a son, he’s 13, and he’s Autistic. Zelda asked a few questions, and when I explained that he was fairly moderate to severe on the spectrum, she said, “Oh, that’s bad.”

“No, it’s not,” I corrected her. “It’s not bad at all. It’s just what he is.”

She back-pedaled. She didn’t mean it *that* way, you know. She was only trying to say that she knew it was hard. Okay, I’ll take that. It’s hard on him. It’s hard on us. It’s hard on his teachers. It is hard. But it’s not bad.

Which might be why I was already in the fight-or-flight mode when another woman, let’s call her Aileen, said that she was there because of anxiety and her family. Her family drove her crazy, she said. They wouldn’t leave her alone. Even when she tried to take a walk by herself, they wanted to come with her.

“It’s so retarded.”

Yup. She said that. About the fact that her family wanted to be around her all the time.

Now, don’t get me wrong – I’m not saying that they’re stupid for wanting to be around her all the time. But I do think she’s pretty uninformed to use the r-word in a psych setting.

But no one said anything. Not even the therapist leading the session.

Because I’m not one to shy away from confrontation when it’s appropriate, I went ahead and raised my hand.

“Hey,” I said, “I’m sure you didn’t mean it this way, but, see, I’m part of this movement. Spread the word to end the word.  The word is retarded. I know you just said it, but that’s kind of the problem. It’s pretty insulting to use it as an insult. My son has intellectual disabilities, and so I’m kind of sensitive to hearing it…”

I know I said more than that, and she looked a bit surprised.

I brought up the need to be respectful of all people, and I pointed out how if she was had said something that insulted another group of people, I still would have brought it up because it is disrespectful to insult anyone, especially if they’re not there to defend themselves.

She was cool with it. She apologized, said she hadn’t meant it that way, and said that she normally tries to be careful because she had a cousin with…and she stumbled over it (because I guessed she hadn’t heard it before)…intellectual disabilities.

And then the therapist got involved and made sure that she was okay with me calling her out and asked if I often did that, and I said that, yes, yes, I did. All the time. Because it was important to realize that insulting people because of their disabilities was not okay, and like none of us would like it if we were turned into negative slang, we shouldn’t do it to other people.

I hadn’t expected to have to defend myself, or my correction of someone who used a word as an insult, but there you go. You never know when – or if – you’re going to have to speak up. So don’t be shy. If someone says it, tell them.

Spread the word to end the word.


bowlin1Sixth 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.

bowling2In 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.


simon standing on the beachIn a good way, mostly.

But there’s also the unexpected (and expected) things that happen.

Expected:

  • Having to repeatedly explain to Simon that licking the ocean – and the sand – is not good. (Is it bad that is the first thing on the “expected” list?)
  • Telling Simon that no, we still had two days to go at the beach, but then, I promised, we could go home. Then telling him that, no, we still had one whole day to go. But, I promise, we will go home tomorrow.
  • Every day, we had to go somewhere, regardless of where, to get Simon “reset.”
  • When we were putting something on the big TV in the living room, I asked Simon if he wanted to watch Elf. He’d already said “no” to almost everything else. Elf always gets a yes. I have taught him well.
  • Even though he had a box full of black and white crayons (from Dick Blick) and a huge box of 64 crayons, he still wanted to buy a box of 16 crayons at the super-expensive shop on island.
  • Many, many fine grilled cheese sandwiches (and chicken fries) were eaten during the trip.

 

Unexpected:

  • He helped pick/pack his own toys this year. He couldn’t wait until it was Friday to do it. We had to keep putting him off.
  • There’s still tar in the sand/water, and when it gets on you, it is awful hard to get off. (Not necessarily just about Simon, but he was one of the lucky ones to get the tar on him…)
  • The transition from the house we’d been renting for the past nine years to a totally new house went off with almost no hitches!
  • Simon actually colored in a velvet/paper car and put it together with glue!
  • Simon tried an apple fritter! A whole bite! Of course, then he said no when we offered him more.
  • While Simon needed to go somewhere to get “reset,” some days, the beach did the job. In the past, it always happened that he needed to go shopping somewhere.
  • Simon requested to go to a Target. We had to find one down here because we normally just go to Wal-Mart.
  • He didn’t immediately ask to go home once we got here, and when Patrick foolishly said that Simon could have more juice when we got home, Simon corrected him, saying, “beach house.”
  • After day one, he immediately became uninterested in his iPad. He’s spent most of the trip coloring, watching DVDs, getting hugs, playing in the sand and in the water, and lying around on the floor.
  • Libraries are all about getting books, but anytime we go anywhere else, Simon rejects all book options and doesn’t want to take them home. When we went to the thrift store here, he picked out – and wanted to bring home – a Thomas the Tank Engine story collection.
  • The beach is a great motivator – which we knew already – but it really and truly works when it comes to getting him to use sentences. Nothing like being forced to say a full sentence in order to get into the ocean. The words come out pretty fast for that.
  • The slinky lasted the entire trip before being destroyed on the final day.

 


For anyone who followed my day of live-tweeting Simon having a meltdown because of summer vacation and Dad having the nerve to go to his job, you have probably guessed that we have had some interesting days.

141114-simonBut nothing compares to…

The Escalator of Doom!!!

Simon loves going to the mall. Who doesn’t, right? I blame my mall rat-ness on growing up in New Jersey. I could happily go to the mall almost every day. There’s no need to buy anything. It’s about walking around, people watching, drinking coffee, whatever else is happening. Luckily, Simon is the same way.

Since he’d been having a hard week, I asked him if he wanted to go to the mall.

Of course he did.

We got there, and after walking around for a bit, I told him that he could tell me if he wanted to go into any stores.

He didn’t.

But as we walked close to a Journey’s Kids, he leaned in a bit, watching what was on their monitors. I asked if he wanted to go in.

“No.”

Okay.

We kept walking. He started leaning towards Dillard’s.

“Do you want to go into Dillard’s?”

“Yes.”

I stopped. For real? Dillard’s?

“You want to go into Dillard’s?”

“Yes.”

He was pulling my hand towards the overpriced department store already.

“What do you want in Dillard’s?”

“Escalators.” He gave me a look that told me just how stupid I was to have to ask that question.

“Ooooh-kay.”

We went in.

Found the escalators.

He gripped my hand, gave me his notebook (Blue’s Clues – Steve’s notebook) to hold for safekeeping, and we rode up the first one to the second floor.

“Do you want to go up again?”

Once again, that tight grip on my hand, and we were up on the third floor.

“Okay, do you want to walk around or go down?”

“Down.”

Easy enough, right? Right?

Oh my god, you don’t know how wrong.

I took his hand and his notebook, and we walked around the circle of escalators to go down.

Another crushing hand squeeze on my right hand, and I was trying to hold notebook in one hand and hang onto the railing with the left.

I started to step out onto the escalator.

He didn’t.

He kept his grip and stood firm at the top.

One of my legs – the one on the step – kept moving further away. My left hand and arm kept moving away. The right side of my body, though, was trapped, held firm.

Before I split and became one of those horrible escalator accidents that you always seem to read about, I pulled myself back up to the top.

“Okay,” I told Simon. “You have to step off with me. Okay? It’s not safe otherwise. Ready?”

“Yes.”

I tried again.

He stood there again.

I almost split in two trying to not fall down and snapped myself back to the top before I dragged him down with me.

“Let’s take the elevator down.”

“Okay.”

We took the elevator down to the first floor.

“Now, do you want to keep walking? Or ride the escalator again?”

Foolish question.

“Escalator.”

Up we went. Up we went.

Third floor.

“Should we take the elevator down?”

“No.”

By now, my brain had moved onto the oh-my-god, we’re-gonna-die phase of the escalator riding. I could only think about the video that had been circulating the internet, the woman who got sucked into the escalator and killed.

But I’m a mom. I could do this. Maybe.

“Okay, we can try this. But you *have to* step off with me, okay? It’s not safe otherwise. You *have to* step when I do, okay?”

“Okay.”

He took my hand. I held his notebook.

“One, two, three,” I counted.

I stepped.

He let go of my hand.

I went down the escalator, and he stayed at the top, watching me.

Panic moment.

Was he going to try to follow me, trip and fall, and suddenly I’d be on the news as the mother who watched her child die in a freak escalator accident?

Was he going to freak out because I’d left him at the top?

Should I run back up the escalator?

Yeah, that wouldn’t work.

Instead, I told him to wait for me and watched him carefully as I ran down the escalator, ran around the corner, and came back up to him.

“We need to take the elevator down,” I told him.

“Escalator,” he demanded.

“You *have to* step off with me,” I said. “Do you understand?”

“Yes.”

“We’re going to step on at three, okay?”

“Yes.”

He grabbed my hand again. We braced ourselves.

“One…two…three…”

And we did it!

We did it!

Down to the second level.

“Okay, we’re going to do it the same way. On three.”

He nodded.

“One…two…three…”

We made it all the way down!

After that, he agreed to be done with the escalator, and I went and bought him a cookie at the Nestle stand.

We had survived the escalators of doom.

(Until yesterday, when we went and rode the escalators at Sears…but that’s a different story…)


subliminal_animationFor the uninitiated into the secret language of special needs education, ESY is Extended School Year. So far, Simon has qualified for it every year.

To qualify, your child must show significant regression linked to long breaks, and there must be significant recoupment. Of course, this means some school districts make up data/rules, but we’re in a good system that actually uses real data and rules. But I digress…

The thing is, Simon *loves* going to ESY. He loves school anyway, so it’s not surprising that he’d like ESY since there are less kids, and he gets a lot of attention. On top of that, he still gets to ride the bus twice a day. It’s like heaven for him.

The only problem we have with ESY is it often has a lot less communication between the teachers/parents. Part of the issue is because ESY has shortened days, and it’s only four days a week. It often gets scheduled rather last minute because of the need for current data, and that can also make it more difficult to know who the teacher will be ahead of time. Add those factors the fact the district itself is on reduced hours and there isn’t always too much staff around in the school itself to answer phones.

Now, I say all that, but I do know how to contact people, and it’s not like we never hear from anyone. I’m just saying there’s less communication.

Which is why I’m wondering what, exactly, they have been teaching Simon over the summer.

I ask that because this morning I woke up to Simon sitting on the bed next to me, whispering, “We’re going to HEB,” over and over again. Quiet. Deliberate. Convincing.

I think they may have been teaching him how to use subliminal messages.

Oh, and do you need anything from the store? Because we’re heading out to HEB in a few minutes…

(Oh, and thanks to http://gifmaker.me/ for making the animated gif process quick and easy!)


Augen (eyes)

Language number five…

One of the first things the pediatrician pointed to was Simon’s lack of speech. He was a year old, and while he’d babble, for the most part he just pointed at things he wanted. He didn’t say Mama or Papa. She asked if we would mind if he got examined by Early Childhood Intervention when he was 15 months old if things hadn’t changed. We agreed.

He didn’t talk by the time he was 15 months old.

He also didn’t talk by the time he was two years old.

Eventually, through the use of videos, he learned American Sign Language (ASL).

Then he began speaking, also through the use of videos. His first word, which he said when he was almost three years old, was “bear,” and he said it after watching a Baby Bumblebee video.

For a long time, we worked with sign language and English. He slowly picked it up and began expanding what he said.

Years passed.

He taught himself to read.

He learned how to write.

Then, earlier this month, not long after he turned 13, he discovered the language options on those old Baby Bumblebee DVDs. He’d never stopped watching the videos. I guess he still liked the word repetition they feature.

We realized that he was watching the Spanish option, repeating all the words. We asked him to tell us things in Spanish, and he did. He knew dog was perro and cat was gato.

Next up was French. I guess he thought that he’d already mastered the Spanish parts of the DVD.

Of course, when we went out to lunch with a friend, I tried to get him to show off. I asked him how to say dog in French. He looked at me like I was an idiot and said, “poodle.”

After a lot of laughing, I asked him for it again and he said, “chien.” I asked him for it in Spanish, and he said, “perro.”

So, yeah, he took to those languages.

Then, not even a week ago, he began learning German. His favorite word was “augen” (eyes).

A few days ago, he swapped to the final language option: Japanese. (Dog is inu, by the way.)

If you’d asked me ten years ago what I thought Simon’s “special skill” would have been, I might have guessed his art work. He’s awesome when he draws. I never would have guessed that he’d be into languages. I’m not sure that he’ll stick with them, but he obviously has quite a talent there, and maybe this will be where he goes in life. It goes to show you that ten years can be quite a long time and quite a lot can change.


Local Challenger League teams - Simon's in the middle!

Local Challenger League teams – Simon’s in the middle!

This is Simon’s second season/second year with the Heroes here in League City. It’s part of the Challenger League, a special needs Little League baseball thingy.

Here’s why it’s awesome: it’s normally one of the most relaxed ways of playing games.

Simon’s game today was at 10 a.m. Which was only a slight problem because we were out at a late movie last night, and so we set the alarm to get up in time to make it to his game on time. But then one of us (ahem, Patrick) reset the alarm when it went off without realizing it, and so we slept a bit more than we meant to.

We woke up at 10 a.m.

Whoops.

But we got Simon ready – he was totally up for it because most of the season got cancelled because of all the rain we’ve been having lately. And we got there less than half an hour late.

The game was already underway, but they got Simon slipped into the batting line-up.

Because we were late, he only got to play one and a half innings (instead of two), but he was still happy enough.

The best part, though, wasn’t even his playing.

The best part was that, near the very end of the game, during Simon’s team last at-bat, the last chance to bat, one of the other team’s players decided that he did want to bat after all. Apparently he hadn’t wanted to go during his team’s turn, but he changed his mind.

So he came up and hit.

Because why not?

Everyone had a good game. Everyone had fun. And then there was ice cream afterwards.

Only one game left this season. Hoping the weather doesn’t knock it out of the park.


simon and mom on boatWhile we were on vacation last week in Alabama, we took a boat ride. It was a three hour tour (but the weather never got rough, and the tiny boat was not tossed). But there was a woman on the boat that very clearly had autism.

She was older, my guess is in her twenties, maybe late twenties.

And she seemed, to all outward appearances, to be happy.

She rocked, although, to be fair, we all rocked since we were on a boat. She stimmed. She used sign language to communicate, and she seemed to argue with one of the people with her – her father, maybe? – who kept getting frustrated. She was signing something I couldn’t quite figure out (she was superfast as it), but I saw her saying something about little, and he kept saying something big. No idea what it was. But he got frustrated with her because she wouldn’t give.

Otherwise, she sat there, beaming happy. Her hair was blonde; her eyes were blue. She wore a charm bracelet that included all types of charm, including an autism puzzle charm.

And it gave me hope. Hope that in another 10 years, when Simon would be about the same age I’d guessed her to be, he’d be able to communicate that well, argue rationally, stimming in public without judgment.

As it was, Simon filled the boat ride with lots of “tv talk” (a lot of Elmo, for some reason), and paced up and down, back and forth, touching everything he could safely touch, his sea legs fully under him, looking like he barely needed to make any adjustments because of all the rocking and rolling the boat was doing in the waves.

I wanted to talk to the woman and her family, ask questions, know their story.

But that’s not my right. It’s their story, and it’s their life, and I wouldn’t normally go up and talk to random strangers, but, at the same time, I’d love to have random strangers come up to me and ask me about Simon because I’d love to educate them about him and about us and try to show them that autism isn’t some unsurmountable evil, and that as long as we can handle its side effects (anxiety, aggression, lack of communication), then there’s no reason to do anything else. As long as Simon can function and be happy, who are any of us to judge that he needs a “cure”? that he needs to change to fit in? That he has to enjoy things in a certain way? That there’s a right way and a wrong way to live and be happy?

Acceptance can go a long way, and seeing other people being accepting, being happy, being out there – it tells me that acceptance is happening.


When I was growing up, every Easter morning, my sister and I would wake up early and find clues to help us hunt for our Easter baskets. One time the baskets were hiding in the cabinet under the barrel cactus. Another time, on the stairs to the attic. The baskets would be filled to overflowing with candy and, normally, something my mother had knit or crocheted – a stuffed animal of some sort or something else small to try to keep the basket from being more than a wicker holder for chocolate and jelly beans.

This year, Simon was 11 when Easter rolled around. His Easter basket from last year was still sitting on the bookcase behind the sofa, and there were multiple unopened toys in it, things like bubbles and little plastic toy cameras that let you look at images of the Easter Bunny.

But he seemed excited for Easter. Sort of.

He wanted to dye eggs.

He wanted to have an Easter egg hunt.

Image

And this year, instead of buying another Easter basket and filling it with little toys, we just got him a “Little People” Easter train (suitable, according to the marketing, for a 1 1/2 to 5 year old) and a set of two Play-Doh filled bunnies that could make little imprints of bunnies and carrots. He played with both things, and he said he liked them.

Image

I don’t know that he “gets” Easter. He knows about it, enough to know what is related to it. He knows it’s time to dye eggs and hunt for eggs and that there is an Easter Bunny (whether or not he believes it’s an actual Easter Bunny, I have no idea).  He quotes the Charlie Brown episode about making “egg soup” when we hard boil the eggs. [Sorry for the bad video – this one is hard to find!]

I also don’t know that he will ever experience Easter the way I did. He doesn’t eat candy, except for Tootsie Roll Pops, which have to be red, and which he also carefully eats down to the Tootsie Roll part and then throws away as opposed to actually eating the chocolate-like substance that hides in the middle. (I can’t, in good conscience, call Tootsie Rolls chocolate.)

He also doesn’t really figure out clues, unless it’s with Blue and Steve, and even then, I’m not sure he figures out the answers on his own. But he can sure memorize them and then tell you what they are and what they mean. And he can draw them all so they look exactly like what Steve has drawn. (Another admission – I also can’t, in good conscience, say that I have watched all the Joe episodes because Joe is about as good as the “chocolate” that is in Tootsie Rolls…but Simon likes them, so I’m not about to stop him any more than I would stop him from throwing away the center of the Tootsie Pops.)

It can be hard on the holidays to avoid dwelling on things that could be or “should” be instead of just accepting things that are. Because of how I grew up celebrating Easter, that’s how I want to teach Simon to celebrate it, but that’s not happening yet, and it may never happen. And that’s okay. He’s enjoying Easter in his own way, and while it may mean that the only Easter candy I get to raid is stuff that we buy for ourselves, that doesn’t mean that he’s missing out on anything. He’s not deprived of Easter goodies – he just wants something different than what I wanted, and even different than what a lot of other kids want. That doesn’t make it bad, and it doesn’t mean that it could or should be any other way. It’s the way that works for him, and for us, and while some day I may be able to write out clever clues and lead the way to a basket filled with fun toys and chocolate treats, maybe not.