Life, Autism, Disability, and More

Tag Archives: accommodations

Beard and mustacheSimon started getting a mustache when he was 12. It was cool, though, because the school district allows mustaches from junior high on. (I’m not sure why.)

Now he’s 15, and he’s starting to get a lot of chin whiskers. It isn’t cool, though, because the school district does not allow beards. (I’m not sure why of this either…)

He seems to be quite fond of his beard, though, because whenever we ask him about shaving it off, no matter how we phrase it, no matter how we introduce the idea, his response is always the same.

No.

Apparently it’s not just his chin hair that’s started the no-ing in his life. It’s also the cafeteria food.

Simon is a grilled cheese connoisseur, and the school cafeteria does not meet his exacting standards when it comes to the proper presentation of grilled cheese.

Two grilled cheese sandwichesTop: Unacceptable. Simon will say no and refuse to take it because there is cheese on top of the bread.

Bottom: Acceptable. The cheese is in its proper configuration and does not cross the plane of the bread.

At home – and restaurants – this doesn’t be a problem, mostly likely (we’re guessing) because there’s not a choice involved. At home, he helps make it himself, and at the restaurant, it’s served to him. No choice to reject it and get a different plate from the line.

Hopefully, going with the flow when there aren’t other options a good sign.

Hopefully, that means that if we present him with a razor (without an option), he’ll decide that there’s no choice there, either.

Hopefully, if that doesn’t work, his high school will be understanding.

And hopefully, if they aren’t, it will be easy enough to create our own religion that requires members to grow beards and eat properly made grilled cheese sandwiches.

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dentist selfie

Dentist Selfie!

You get to the school to pick up your 13 year old, and you find out that (according to him), no one has told him all day that he’ll be going to the dentist, so the first thing he says when he sees you is, “We go home.” You’re forced to explain that, no, we can’t go home. We have to go to the dentist. He isn’t pleased to hear it.

You haven’t had a chance to grab any apple juice before picking him up because the day had spiraled a bit out of control, so you pray that there is some juice left from his day at school. Thankfully, there is. You convince him that going to the dentist will be fun and give him a juice for the ride.

On the way to the dentist, he reiterates his urge to go home. You think about the previous dentist visits, and you tell him that it’s okay: they’ll take pictures of his teeth (he likes pictures), they’ll clean his teeth, and then the dentist will look at his teeth. You make him repeat it back. You go over it for the whole ride. Then you miss the turn for the dentist’s office and have to make a bunch of left-hand turns in order to get back to where you needed to be.

You check in at the dentist’s office, and you discover that they’ve lost a bunch of information, so you need to fill out the five pages of forms. Two of the pages aren’t things you can actually fill out – they ask about whether or not the patient has pain, has any sensitivity to cold or heat, and other questions that would require a level of communication that doesn’t exist. Then there’s a page that asks you to initial that you understand that only the patient can go back by himself. You go up to the counter and talk to the woman who laughs it off and says it’s okay, there’s no test, but you think it’s kind of important that they realize you don’t know the answers to these questions, and they won’t be able to get them either.

The hygienist comes to get you, and instead of following the carefully prepared order of operations you’ve outlined, she immediately wants to start the cleaning.

Shit.

Your son begins to have a bit of a meltdown the minute he sees the chair and tells you (and the hygienist) quite loudly and repeatedly that he wants to go home. You change the order of operations and begin telling him that it’s just going to be a cleaning and then having the dentist look at his teeth.

He still refuses to sit in the chair. He instead sits in the dentist’s chair that spins, and he stares at the seat while repeating that he wants to go home. He’s almost crying, but not quite. You know that the other patients are probably not enjoying it because they are also kids who want to go home, but you try not to focus on that. Instead, you get into the chair to show him that it’s comfortable and it’s fine, and look, see, there’s a light, and they need the light to be able to do anything, so how about we switch places?

Miraculously, it works.

He gets in the chair for you, but he is still complaining. That’s okay. You rub his leg while the hygienist begins to clean his teeth. And HE LETS HER. Yes, that’s right, he actually opens his mouth, he picks the mint flavor, and he lets her clean his teeth.

You almost kill the hygienist there and then, though, because as she’s working with him (brilliantly well, actually), she begins to try to soothe him and she brings up Dad. You want to crawl inside yourself. Maybe he didn’t hear it, you think. But, of course, he did. And he immediately focuses on wanting to go home and having Dad waiting at home. Neither of these things will happen right away, of course, and now he’s upset again.

You have to tell the hygienist that, no, that’s not a good thing to use to make him feel better because it will only make things worse, and she apologizes, but the damage has been done, and while she’s working so hard to clean his teeth, he is talking around her – quite clearly – and saying that he wants to go home and that Dad will be waiting at home. Inwardly, you are cringing and hoping that he will magically forget it, but you know that isn’t going to happen because he doesn’t forget things.

The cleaning is over, and the dentist comes in, and she gives you the news you don’t want to hear – there’s a big old cavity on tooth number 13 (of course it was number 13), way in the back there, and they will need to fill it. Which is both good and bad: bad because they will need to sedate him, but good because they offer sedation and they do it at 7:30 in the morning, so keeping him from eating until the appointment isn’t as hard as you thought it would be. But now your nerves are even more frazzled because you have to start worrying right away, even though the appointment won’t be for over a month.

Then, to make sure she hasn’t missed anything, she asks to see the x-rays. The x-rays that no one took. The hygienist says that she didn’t because she was worried he wouldn’t let her.

You are mentally slapping your head, and hers, because you had taken that out of the rotation, and now you have to tell your son that, no, he can’t go home yet even though he finished the final thing on the list because the list has been re-ordered again, and now he has to go get pictures taken. But he likes pictures enough that he goes along with it, and he does very well, as you knew he would, and then it’s time to go back and wait in the chair again.

The chair is not happening.

Nope. Not the chair.

Luckily that’s okay because they don’t need him in the chair – they’ve already done all that good stuff, and so he can sit in the dentist’s chair (his original goal), and so he does okay, other than repeating that he wants to go home and then getting a little nervous because a kid in the next exam room over keeps trying to make a break for it and comes past the doorway multiple times.

Finally, it’s time to go find out how much everything is going to cost. Bonus: the day costs nothing thanks to insurance, but the filling will be $400 after insurance pays because of the need for sedation and all the other fun things that go with it.

So you leave, and you begin worrying about his next dentist appointment.


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.


Because who doesn't balance on a huge ball while "sitting" at the couch??

Because who doesn’t balance on a huge ball while “sitting” at the couch??

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.

april 18

His first blanket will be here next Tuesday…more updates then!


april 8Simon had a bad morning. Which seems fair because I had a bad morning, too. I seem to have picked up the stomach flu that’s going around, and I woke up with a serious headache, severe nausea, a stuffed-up nose, and a sore throat. Fun!

But still more fun than Simon had.

Apparently, starting at about 8 a.m., he began throwing a fit at school, demanding that his teacher call us because we would “take him to the zoo.” He told her to “call mom and dad” and that “mom will take you to zoo” and “dad will take you to the zoo.”

Uh. No. Nope. There had been no zoo discussions. No mentions of the zoo. No idea where the zoo concept came from.

But the argument about the zoo lasted.

I was still asleep and trying to feel better when the teacher tried to call me, so I didn’t hear my phone, but she called Patrick next, and he answered. Then he had to get on the phone and explain to Simon that no, no, we were not going to pick him up from school, and he was not going to the zoo.

That phone call happened at 9:30.

An hour and a half after Simon started wanting to go to the zoo.

At 10:15, he finally calmed down.

Let that sink in. It was over two hours of Simon freaking out because he got it into his head that we were going to take him to the zoo.

Wow.

Just wow.

His teacher sent home an ABC page. (For those not in the know, ABC = Antecedent, Behavior, and Consequence. In other words, what happened to cause the behavior, what behavior was it, and then what happened because of his behavior.) The page goes into great detail about everything she tried to calm him down. It includes instructions, prompts, redirection, social stories, counting, alternative behavior techniques, squeezing a ball, and breathing. That’s a lot to do, especially when you consider that he was screaming at her and then getting physically aggressive with her, including scratching and pinching her.

It spanned going from the cafeteria to the classroom to his independent work time to group work time to quiet time to independent computer work.

Again, wow.

Just wow.

And this is why we all need to be appreciative to special education teachers. Because this is what they deal with. This is what their days are like. This is what they are trying to help with.

At the same time, I also wanted to point out that while the teacher wasn’t enjoying herself, neither was Simon. That had to be a truly stressful time for him. He spent over two hours completely wound up. He couldn’t calm himself down, and he couldn’t get anyone else to do it, either.

Imagine, if you can, what it would be like to spend two hours completely freaking out. You are trying to get a message to someone, but you can’t. You are trying to get something you need, but you can’t. You are stuck, unable to communicate, unable to calm down.

He was better after that. He found a way to calm down, he had a good afternoon, and then he fell asleep on the school bus coming home. He got to go horseback riding at SIRE, and then, when he got home, he went to sleep.

But not before mentioning that he was going to “have fun” tomorrow “at the zoo.”

I told him that there would be no zoo tomorrow – he could go to the library, though, which he agreed would be a good replacement. I am thinking, though, that Sunday might be a day at the zoo now…


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.

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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.

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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.