Life, Autism, Disability, and More

Monthly Archives: April 2015

april 12I know it’s only April, but I’ve already begun thinking about Simon’s birthday party. For a few reasons.

First, he’s going to be 13. Thirteen. A teenager. Oh dear god.

Second, we like to give him a good party because he likes it. While he doesn’t always seem to “get” birthdays (he will still tell you he’s 10 when you ask him how old he is), he likes to get presents. So planning a party – and setting up a quick Amazon wish list for him – is something that’s good to get done in advance.

Third, and final, he asked.

That’s the weirdest – and most important – part of it. Simon often starts focusing on the future, but it’s normally not a good kind of focus. It winds up being more like an obsession. He repeats it, he lets it upset him, he can’t let it go.

But in this case, he brought it up, saying that he wanted his birthday party. I asked him where he wanted it, and he told me, “Chuck E Cheese.” Because, as he has learned from all the commercials, Chuck E Cheese is where a kid can be a kid. So he loves going there, even if he doesn’t actually play most of the games. He much prefers to run in circles, see Chuck E when he comes out, and choose a prize.

Ah, prizes. When Simons hit the prize counter, we normally have anywhere from 500 to 1,500 tickets. Sometimes even more. Why? Because we will play the games and win the tickets (hey, it’s fun!), but then Simon looks at the prizes and picks something that costs 20 tickets, like a small orange spider. Then all those tickets roll over. Every once in a while, he picks something big, like a ball (anywhere from 200 to 1,000 tickets) or even a slinky (60 to 500 points).

Back to the topic at hand, though.

The party!

Simon asked for the party, and while he wanted to go to Chuck E Cheese since then, he hasn’t focused on it just being for a party. He hasn’t decided that he needs a party now now now.

That’s success for us. And him.

So we’ll be planning the party, and I’ll be setting up his Amazon wish list, and we’ll see (some of) you in June!


April 11Today was a good day for Simon. He got to play baseball this morning, and then we took him to the zoo (a day earlier than we’d planned, but he certainly enjoyed it).

Sure, there were some rough moments.

He got upset when he had to bat twice during the first inning of the baseball game. He knows the way the game is played, but since his team was half the size of the other team, the organizers went ahead and had the kids bat twice. Fun for a bunch of them, but for Simon, just a bit too much of a change in the routine. He got over it, though, thanks to some awesome high school helpers and good coaching. He even went up for bat in the second inning. (The games are only two innings long…)

After the game was over, he didn’t want to go home. He want to go “somewhere.” So we decided it was time to go to the zoo before the rain came in.

He had a great time there, too – we saw the sea lions, the elephants, the meerkats, the pirahannas, the bats, all the good stuff. He got to ride on the carousel, one of his favorite things.

And then. Then he decided it was time to go out to dinner. At one p.m.

We delayed him and stalled him, we went over the song from ‘Singing Times’ about what time dinner was – “When you eat at night, that’s dinner” – and talked about when dinner would be. Once we got home and ate lunch, we went over time again, and we wrote up a note about time. Then it was time for distraction mode: we reminded him about his new horse stamp set that he loves, and he settled on the floor with it to stamp up pages and then color them in. Win!

Finally, a trip to Denny’s where he enjoyed his grilled cheese and French fries and stole some of Patrick’s pancakes to top it off.

But the future is a scary place, especially when your worries are compounded by not knowing.

We don’t know what Simon will be capable of.

We don’t know what Simon will need.

We don’t know what Simon will want.

And the news, Dateline in particular, has been running information about aging out.

A fear for any parent with a special needs child in the same situation. What is going to happen, not tomorrow but in five years? Ten years?

We have our plans for retirement, but we don’t know where Simon will fit into those plans. And what happens beyond that, even? What happens after we’re dead?

It’s amazing how easy it is to think of the future, especially when there aren’t any sure answers.


Image by njaj via freedigitalphotos.net

Image by njaj via freedigitalphotos.net

Nothing exciting happened. But one quick thing worth mentioning.

It was raining today. Off and on, but enough to bring out lots of birds.

Which is one of the times when we’re happy that Simon’s pediatrician gave us a handicapped tag oh so many years ago. Because when the birds are out, Simon kind of gets freaked out.

I’m not sure what it is about the birds that bother him: the way they move? The noises they make? I mean, I’m not wild about birds, either, but to him, they are totally freaky. He jumps, he runs, he tries to get away from them. So using the handicapped tag works great on days when we have to go somewhere (like the grocery store) because then we can park close to the store. Trying to navigate him through a large parking lot is probably not the safest thing in the world for him. Or for us.

So not a big deal. Everything ran smoothly. And Simon went to bed happy.

Let’s see if there’s a ball game tomorrow or if the rain continues…


april 9Yesterday I mentioned that I was sick. I had hoped to be feeling better today so that I could go up into Houston for a two day conference on autism. I even had a friend offer to let me spend the night so I didn’t have to deal with the traffic two days in a row. But when I woke up this morning, I felt like I had a hangover on a boat – the room was moving around me, and I wanted to throw up all over the place. I decided that driving up into Houston was probably a bad idea as I had no urge to puke in my car as I’m a total sympathetic vomiter, and I was afraid that once I started, I’d never stop. (That’s your daily gross-out. You’re welcome.)

I stayed home, and I slept until almost noon, got up and ate a bowl of cereal, and then ran a few errands with a friend just to get out and move around. Wednesday had been spent in bed, with a few hours on the couch before going back to bed, so I figured that a nice slow start was a good idea. And it was. I am definitely feeling better than yesterday, and I am planning on heading up to Houston tomorrow morning to catch day two of the conference.

But.

When Patrick put Simon on the bus this morning for school, he didn’t know how sick I felt, so he told Simon that I’d be gone for a conference. Simon is, luckily, used to this. He knows that Mom and Dad sometimes go away for work, and as long as one of us is there, he’s normally okay with it, although there are still the occasional melt-downs when he decides that he *needs* one of us, usually the one who’s gone.

So when Simon’s bus showed up this afternoon and both Patrick and I were there to greet it, Simon was confused. He told me repeatedly that I should be at a conference. I explained – with words and sign language (because sometimes sign language helps to get him to pay attention) – that Mom was sick, and so she would be going to her conference tomorrow instead.

Nope.

Not acceptable.

Mom had been going to a conference, and go to a conference she must. He made it clear by telling me over and over again that I was supposed to be at a conference. He would let it drop for a minute to ask for a snack or to ask for juice or to pet the dog or a cat, but then it came back up. “Mom goes to a conference. Mom goes to a conference. Mom goes to a conference.”

Okay. I know when I’m not welcome.

I still had my bag packed up with my computer and some writing notes for the conference because I had gone to bed hoping that I’d be up for it today. I picked it up, told him I’d go to the conference, and headed to the library for the afternoon. It’s nice and quiet, I get to find some good books to read, and I can get some writing done without cats sitting on the keyboard.

I really hope that I feel good tomorrow because I’m not sure I want to spend two afternoons at the library, though…


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…


April 7“Nothing is easy.
Though time gets you worrying
my friend, it’s o.k.
Just take your life easy
and stop all that hurrying,
be happy my way.”

  • Jethro Tull

Some days, Jethro Tull has my back. Like today.

It really shouldn’t be too bad a day. Simon has gymnastics, which he *loves* and looks forward to.

But this afternoon, I also got a phone call that Simon has been doing his “twitch” all throughout school.

Let me explain it.

Simon is on medications, and some of them, in the past, have caused twitches or other involuntary (and unvoluntary) movements. Two years ago, we had him go in for testing to see if he was prone to seizures or having seizures that we weren’t able to see or document. They flashed lights, made him blow on a little wind-mill toy to make it spin, and did all sorts of stuff to see if they could trigger something.

Nothing.

We managed to get in and see a neurologist to review the results of the testing, and he was extremely relaxed about the whole thing. He told us that what he was seeing, and what we were telling him, sounded like tics and that they would likely come and go over time. There didn’t seem to be any abnormal brain activity, and it was “normal” for some children with autism to have those types of movements. In fact, after reviewing the meds that Simon was taking, he told us that the meds should have helped *stop* any tics or twitches, as opposed to causing them.

Sound good, right?

But then Simon started a new one. He seemed to only do it every once in a while, and there was some sort of pre-cursor to it.

The twitch was a serious one, at least from an outsider’s view. Simon would tense his body, then twitch, starting at his head, but it looked like it ran through him. After he twitched, he would often say “hi” or “hi Mom” or “hi Dad” or something.

The thing is, if you asked if he was okay, he could answer yes immediately, and if you told him to stop, he would. And he normally only did it when he was mad or upset or if it was time for bed. (I have no idea why going to bed caused it…but, hey, it’s Simon. Whatever works.)

Part of me still thinks it’s just a major stim. Something he’s doing because it feels good.

But then his teacher called and said he had been doing it all day in school. Not just a few times, but over and over again. She had taken him to the nurse who had checked his eyes, checked his grip, all that kind of good stuff, and he was fine from a physical stand point.

But…

But he kept doing it.

He’s on the bus now, coming home, and I’ll be keeping a close eye on him before, during, and after gymnastics, but I can feel the stress invading my body as I get ready for it. Get ready for careful watching. Get ready for worrying if I do notice it. Get ready for calling the doctor, going to the doctor, getting tests done, and, of course, even more worrying about tests and doctors.

Because, well, as Tull has said over and over again – nothing is easy.


April 6It’s the most wonderful time of the year…no, wait, that’s Christmas.

This was ARD Day!

An ARD is a (normally) yearly meeting that is meant to help determine the IEP for a child with special needs. For those not up on the alphabet soup, ARD is “Admission, Review, and Dismissal,” and it deals with creating, updating, changing, whatever goals and objectives for the year. They happen to bring a child into special programs, keep the child in them, or move the child out of them, whether because the services are no longer needed or because the child is graduating. The IEP is the Individualized Education Plan, which is needed because every child in special education will normally need their own plan in order to make sure they are meeting grade-level (or functional-level) education goals.

Makes sense so far?

Today was our meeting.

I had gotten the call from the speech therapist last week, which I had blogged about, and the meeting itself was this morning.

First – the speech therapist really, really thought that we were gonna agree to her idea of halving the services Simon received. She began all friendly like, touched me on the shoulder (don’t touch me!!!), and mentioned that she “and Mom” had “chatted.” Uh-huh. “But Mom wanted to think about it.” It felt like condescension center in the room. So Mom spoke up and pointed out, “Yeah, and I disagreed with it then, and I disagree with it now, too.”

The conversation (often one-sided: her side) went on for almost an hour. She kept arguing that he needed *less* pull-out speech therapy because “the goal of speech therapy was to get out of speech therapy.” Which is kind of funny because there we were, thinking that the goal of speech therapy was to increase his speech and help him with daily functioning! How silly of us! She argued that measurements were subjective (uh, no, they are objective when you make an objective and then measure it by 7/10 tests as a “mastery” of the objective), and she argued that the fact that he hadn’t progressed in some of his goals as proof that he needed less speech therapy and more “consultation,” i.e. she would talk to the teacher and observe him, but not actually work with him.

She couldn’t provide any evidence or proof that her method of change – giving him less one-on-one instruction and help – would actually helped, nor could she back up her choice except for her “professional opinion” (which she repeated about eighty times in that hour). She cited that Simon was answering questions about videos, and said they were different videos every time. I’d like proof of that. Because he sure doesn’t do that anywhere else. He still says “yes” when someone asks him how his day was. Her response was that it wasn’t a “wh” question. Umm, yeah, because people only ask “wh” questions. “How” should just be dropped from the English language!

Another thing she said that set my nerves on end was when we stated that he did not make requests – he simply will say what he wants “banana” or “crackers.” She said that what he was doing was acceptable “for his disability and his placement.” Woah. So we should just give up on getting him to use sentences because he has autism and is in a self-contained room? Really? Cause if it’s all about disability and placement, lady, then let me tell you what I think about your functional level when it comes to talking to parents…

Sigh.

In the end, we had a bit of a stalemate and agreement: Patrick had pointed out that if having the consults were so important, then why not add them to the already in-place speech therapy? I think, to shut us up, she agreed to provide both the consults and the in-place speech therapy through the first nine week period of the next school year. The best part? That’s more than she wanted to give him. She would have done better to just argue to keep it the same.

Now, we will be going down after those nine weeks. Unless, of course, we call another ARD and argue some more. We’ll see how it goes. She might be right, and going down might help. But I think that going down now is a bad idea, and as I’ve said (and heard) so often – parents are the experts on their child. A woman who sees my son once a week is not an expert on her, regardless of her training. She may be an expert on speech, but that doesn’t mean she knows Simon.

Second – the OT, after hearing the hour-long argument with the speech therapist, said, “You know, I was going to suggest going down to three sessions with him, but I think we’ll just keep it at four.” To be fair, if she had suggested three, we probably would not have argued, but I’m glad that she kept it at four because I do think that will be good for him, at least through the transition to junior high. Maybe when we have our ARD in the fall, we’ll drop that down.

Third – and final – argh! ARD! ARDs are always stressful. And this time, for some reason, we hadn’t been provided with any paperwork ahead of time, which made it worse because we weren’t sure what to expect. In the past, we normally get some paperwork to let us know what they’re going to go over. I really don’t like not getting it. The goals/objectives should be decided by the ARD committee, and when the school keeps the parents in the dark about the drafts, it can make things worse, cause more stress, and, honestly, make it feel like the parents are not a welcome part of the committee.

Now, we’ve been doing ARDs for nine years, and we’re pretty comfortable with the ideas of asking questions, asking for clarification, and disagreeing with what other people say. But for those who are new, here’s my advice: don’t be afraid. And remember that if you don’t ask, you don’t get. Get data if you need it. Get information. Ask questions. Demand responses, if you have to. You’re the expert on your child. You’re the advocate for your child. You’re the one who has to be willing to do what it takes. So, to totally steal someone else’s motto: Just do it!


april 5Easter!

But without candy.

No candy.

I want to repeat that again.

No candy.

No way I would have survived Easter without candy.

Chocolate bunnies.
Chocolate eggs.
Jelly beans.
Peeps! Peeps! Peeps!

So it’s really odd for me to try to create an Easter basket that doesn’t include candy, but Simon isn’t into candy. Sometimes he likes Tootsie Roll Pops, until they get to the Tootsie Roll part. Then he throws them away.

But he loved his basket. It had fun squishy toys (a bunny and a caterpillar), eggs with erasers and stickers in them, pencils, mini Thomas the Tank Engine toys, and a set of Easter Matchbox cars.

And he loved searching for eggs on the back porch – the rain we’ve been having on and off for three days made the lawn a little less than hospitable for an egg hunt, especially when the egg hunter hates it when his shoes or feet get wet and/or get any grass stuck on them.

And he loved dinner out at Logan’s with some friends.

So, all in all, a great Easter for him. But no candy.

No candy!!


Children are weird. No one needs to argue that point. But I’m going to anyway.

I was a totally weird child.

One of the best examples that springs to mind happened when I was seven or eight years old. My grandmother grew radishes in her garden, and I was one of those kids who liked to eat fresh vegetables, including radishes. But my mother had carved radish roses and put them in the salad that night.

I decided not to eat my rose, but instead to save it, and I somehow got it from the table to my bedroom without anyone noticing. There, I hid it in a dresser drawer.

My parents found out (probably my sister told on me), and they demanded to know why I had a radish in with my socks. My logic was flawless: it was pretty, and I wanted to save it – not eat it.  I still stand by that impeccable reasoning today.

But I can also look back and admit that it was kind of weird.

So you can understand where I’m coming from when I say that sometimes Simon also engages in weird behaviors.

Like his sleep habits.

Simon likes to go to bed at 7 p.m. Doesn’t matter what we do to try to change it. At 7, he knows he wants to “scurry off to bed” (his words, taken from, I believe, Bear in the Big Blue House). Sometimes he’ll ask to scurry off to bed at 6:30. Sometimes he’ll last past 7 if something super fun, like going to fireworks on the Fourth of July, is involved. Generally, he goes to bed at 7, or he falls asleep on the couch.

But then he wakes up in the middle of the night.

Here’s the thing: he doesn’t leave his room. He used to, but then one year when we were on vacation, he determined that he should stay in his room until we got him, and then he kept that up when we got home. He stays in his room, falls back asleep (eventually), then wakes up at 5:20 on school days – early bus! – or 6 am on other days.

Okay, so where did the title of this blog figure into all this, you may very well be asking yourself.

Here’s the answer…

When Simon wakes up in the middle of the night, we can tell because suddenly there are noises coming from his room.

The sound of a child laughing.

The sound of a child singing.

The sound of a child repeating bits from TV shows at the top of his lungs.

april 4Ever woken up to a child loudly exclaiming, “Let’s hide in the shower!” or “There’s a spoon in the bathroom!” or “Sick and dying!” or “Quick! Chase after them!”

It’s super weird to hear that. All of them are from children’s shows. For real. Which almost makes it worse.

Waking up at 2 a.m. and hearing a child telling you to hide in the shower or chase someone…yeah, it’s kinda like being in a horror movie where you realize that the phone call is coming from inside the house.

So…freaky noises from kids at 2 a.m. – weird. Am I right?


April 3I’m not sure I can say that it is directly related to Simon’s autism, but there are definitely times when that is what makes the difference.

Now, this is totally a pity party post. Let me admit that up front. So if you don’t want to read me whine and bitch and moan, go away now and keep having a good day. But if you want to know what happens when I’m feeling like it’s a bad day, keep reading.

It’s the little things, for me, that set the tone for a bad day.

First, Simon is off school for the holiday weekend. It automatically makes him anxious, and he begins asking (very early in the day) to go to HEB. He loves grocery shopping, and shopping in general, so that’s his go-to when there’s no school. He is normally willing to settle for something else, as long as it’s a trip somewhere. It can even just be to the Starbucks drive-thru. But he has to get out of the house. I get that. I do. But I know that he will be anxious all weekend, and that sucks for him. I’m not saying it’s a bad day for me because I have to listen to the anxiety – it’s a bad day because I know he’s anxious, and there’s only so much I can do to help him through it.

Second, I was trying to mail out some cards with pictures of Simon with the Easter bunny. And I realize that there were very few people to mail them to. I don’t like to overwhelm friends who are out of area with pictures of Simon. Let’s be honest – people without kids of their own (and even people with kids) don’t want that many pictures of *your* kid. They want them of their own. But it was also a reminder that our families aren’t around. And I don’t mean geographically. My father lives a whopping 20 to 30 minutes away (depending on traffic), but he doesn’t come to birthday parties, he doesn’t check in on what Simon’s doing, and last year, he didn’t even give Simon a birthday present because he “didn’t know what Simon wanted” (because he couldn’t ask, apparently). Sigh. Family. Aren’t they grand?

Finally, and this is one of those things where it’s a random happenstance, some friends took their kids to see a first-run movie. Not a big deal, you say? Oh, yes, it’s huge. Simon likes going to movies, but he doesn’t like the being quiet part. And he doesn’t like the sitting still part. He likes the popcorn quite a bit, though. So when we go to movies, they’re either the summer-time kid-friendly showing that Cinemark does for $1, or we run by the dollar theater and get something as it’s on its way out. In those situations, if we leave early, whether it’s because the popcorn runs out, Simon get bored, or Simon gets too loud, it’s cool. But what isn’t cool is if we go to a $10/ticket showing and he lasts for ten minutes or just can’t stop echoing something from a previous show or movie. It’s one thing to be loud in a movie that parents paid $1 for, one where they expect other parents to bring numerous loud children. It’s another to go to a theater that is running something new and making people pay an hour’s work for. (Or more than, if it’s someone earning minimum wage.) And, yes, I do know about the Sensory Friendly showing, but those are super-limited. Once a month, not very close to home, and it’s the movie they pick, which is oftentimes at too advanced a level for Simon to get any enjoyment from.

Yeah, I know, a lot of complaining, right? But it really was one of those days.

It did get better this afternoon, though. We ran some fun errands up into Houston, and Simon got to check out some jewelry supplies (lots of rocks to touch!) and some wood/woodworking supplies (lots of wood and turned-off power tools to touch!). He’s a happy camper now, and tomorrow we’ll be dying Easter eggs, so it will be all good.

I do want to also make sure that it’s clear that I’m not complaining about Simon. I’m complaining about situations, situations that we find ourselves in that deal with his issues.