Tuesday, February 26, 2013

Finding Words

Communication is one of the main difficulties our boys face with autism. Both boys struggle with communication, though in very different ways. 

Sawyer only has a handful of very short, simple words - hi, bye, go, pad. There are others, but you get the idea. Right now, a lot of his speech therapy focuses on clear articulation of sounds and also combining and blending sounds. We're getting there. It's can be a painfully slow process, but there's been a lot of improvement from where we started. And he's always willing to try. Whether it's making a request for something he wants, or doing an exercise, or working on school work. He tries, and that's the most important thing. 

We also have his school iPad, which is locked into ProLoquo2go all the time. He can navigate the program like you would not believe. He has no trouble asking for the things that he wants or needs, and once you show him a routine, he can even breeze through a social interaction. One of our favorite requests he makes on the iPad is "When are we eating pretzels?" The kid is always hungry, and apparently he always wants pretzels (it's one of the extra snacks we send into school to help with keeping him focused). My second favorite is one that I wish we didn't have to use. "I'm sorry I pinched." The good news is that he uses it very functionally and also very consistently. The bad news is there are several variations on similar behaviors. It's a work in progress ... 

Beyond the iPad, there is also signs. From the very beginning, his early therapists and his early start teachers and staff used sign language in addition to spoken language. And Sawyer has always picked up on them. He understands most basic signs (especially in the school setting) and frequently engages them rather than speaking, though we still prompt for both.

This particular picture from this weekend made me smile, though he doesn't look too happy in it.

Sawyer's signing was mostly "please" and "more" because it usually was efficient to get him what he wanted. Simple, short and practical are the hallmarks of autism communication in our experience. But this sign is so much more. It's "help." He's seeking out someone and actively asking for help with something he cannot do on his own.

And that is HUGE.

In this instance, his shoelaces had come untied. He wanted my help to fix it so that he could continue bouncing on the trampoline. And I gladly put the camera down to do just that. 

An independent, unprompted communication. Huge.

And that brings us to Xander. 

Because he cannot stand to be left out or outdone in any way, he took matters into his own hands. Just after the photo of Sawyer above was taken, he quickly untied not one but both of his shoes. Clearly he will show us.

And he was quick with his words as well. "I need help shoes, please!"

Xander has words, lots and lots of words. Many of them are scripted and memorized, but many of them are also incredibly functional. You'll also notice that he tends to omit any unnecessary words. Who needs to use extra words like "with" and "my" anyway? Short, simple, and very direct. That's Xander. (The "please" and "thank you" have been forcibly required all of their short lives).

Right now in Xander's speech therapy, we work on things like receptive language, understanding what people are saying and what is being read in a story. We also work on expressive language, particularly moving away from the scripted language into spontaneous language. We work on abstract concepts, like directors and pronouns. We work on the impulsive behaviors, like the non-functional scripting.

We're hoping there will eventually be a day where Pixar movies are not quoted all day, every day. Right now he's particularly obsessed with Wall-E, so there's lots of references to "Ev-a," and, yes, you must do the elongated, robotic pronunciation that Wall-E uses. There is no other way, apparently. We also are still celebrating Christmas right now, because Prep and Landing is another obsession. "Rev up the engines. Instruments are holly jolly. Open hanger doors." I could go on. And on and on. But I think you get the idea.

And that's where we are right now. Moving forward, for the most part. Lots of trial and error, lots of practicing and lots of still scripting, both functional and not. Sign language. Technology. A little combination of all of the above. 

As long as they're saying something ... we're listening, or trying to.

Hard Life Club

Some of us have a harder life than others. Connor would have no idea what that means, but trust me, he's in the latter group. These are some of the pictures from his recent weekend getaway. Grandma and Grandpa from the lake picked him up early from school one Friday and took him to the mountains for the long weekend (President's Day).

It's definitely a hard life. Eating out. Going swimming at the big pool. Playing mini-golf inside (because it was cold). I'm pretty sure the hardest part was coming back home and going back to school. Poor kid.

Special thanks to Grandma and Grandpa for sharing the photos.

Tuesday, February 12, 2013

Just Because ...


Special thanks to Mrs. K for sharing this moment from Sawyer's day.

On the Playground

Every weekday, I arrive at school about 15 minutes before dismissal. I pull up into our special parking spot, designed so that the twins' aides can get them out to us quickly and safely without the chaos and noise of the general dismissal for car riders in the gymnasium. I arrive early, and if the weather is nice, I watch.

You see, our parking spot is just around the corner from the school playground. I can't see it all, but I can see the corner. And I watch, because first grade is generally having outdoor recess at the end of the day when I pull up. And I have two first graders.

Most days I get to watch Xander on the playground. Sometimes I see Sawyer, but he usually sticks to part of the playground that I can't see. He likes a particular play structure that has a bridge. He's usually hopping across it and back, almost always trying to reach letters that just too high out of reach for him.

But Xander moves around. He's all over the place. Some days he is sitting or standing on the concrete wall that surrounds the playground. Sometimes he is watching for me to pull up into my spot. Sometimes he is just happily hopping along the wall. Some days he's on the monkey bars. Other days he's climbing up a structure right next to the wall and jumping his way back down to the ground.

Always, the boys' aides are close by. Keeping an eye on them, making sure they are staying on the playground (and not running out to Mommy's truck or off to the running track in a nearby field). And making sure that they are safe, that my boys (one in particular) who love to jump and take risks aren't taking too many risks.

Some days it's hard to watch. Because I also see all of the other kids. Running around, usually in groups of two or three, chasing each other in real or made-up games. I see the typical, and sometimes that's hard.

It is, I imagine, exactly what Connor looks like when he is on that same playground with his second grade classmates. You know, when he's not playing basketball or kickball or any other sport he can talk his classmates into. Because that's just Connor.

But Sawyer and Xander are not running around in those groups. They have no desire, at least at this point, to run around in those groups. In fact, if any of their preferred places are too crowded with other kids, they often go to other places with less people. They don't crave that interaction, and prefer the quieter, less busy spaces.

And sometimes that's hard to watch. Because I am seeing them through my eyes, through my childhood. I loved playing with friends at recess. I, like Connor, was always first in line for a group game of kickball or dodge ball or anything else we could work up. I did not want to find those quiet places, to be excluded from the other kids running and jumping and laughing across the playground. I wanted to be in the middle of it all.

And that's what I have to keep reminding myself. Sawyer and Xander are not me. They are not Connor. They are perfectly content to do their own thing, to find their own happiness. It's one of the gifts of autism. Their happiness is not dependent on anyone or anything else. Their happiness is truly their own, and they find it in ways that work for them. Whether that's hopping across the same play structure bridge, trying to reach those unreachable letters, or whether it's hopping along a concrete wall all on your own. They are happy, each in their own way.

And that's what I always try to watch. I don't look at the other kids. Kids, who by the way are very accepting and accommodating to my boys, who frequently stop their own games to offer the boys a quick high five or backwards wave, because they have learned those are ways my boys can participate, ways my boys can communicate with them. I smile at those interactions, because it's nice to see their classmates try to engage with them, even if they are not always cooperative.

But mostly I try not to watch the other kids. I watch my boys. I look for their smiles, the ones that start small and then light up their whole faces. Or I watch for their laughs, the ones that often shake their whole bodies because something is just that funny. Because they are happy.

And that's what matters most.

Friday, February 8, 2013


It's been a rough week at our house. And that's one of the reasons I'm incredibly thankful that I don't have to work full-time anymore. I even more thankful for the wonderful clients who are so understanding when things like sick kids or snow days make last minute appearances. With three kids in school, it seems there is always something. And with two of them having not one but two different weekly therapies, our schedule is kind of crazy on any given day.

Last week it was an unexpected snow day. This week it was sickness.

It started out early Monday. After a perfectly normal long weekend (thanks to our snow day), Sawyer was hard to wake up for school and seemed a little off. I thought he was just sleepy because he'd had trouble going to sleep the night before. But then I got a call from his teachers around lunch time. As soon as he saw me, he immediately got his things to leave. By Monday night he was hot to the touch with fever. After some grape Tylenol, he slept and slept and slept (which is SO not like him). He woke up a few times in the night when the medicine wore off, but he was still asleep at 9:30 Tuesday morning, which is really, really not like him.

But as Tuesday went on, he seemed to improve. We cancelled speech, just to be safe and to keep our germs to ourselves. By that night, he was asking for dinner (which he ate) and playing. Wednesday morning we tried school again. He had a great day. He was happy and laughing. Our OT session went well. He worked really hard and even mastered some new skills in the gym. But then Wednesday night he stopped eating again and alternated between crying pitifully and laughing hysterically. He also had trouble going to sleep. Thursday I debated long and hard, but eventually sent him to school. He was drinking juice and eating pretzels that morning, and came running with the other two when I said time for school. I got another call from school. He wasn't himself and now he had a rash that looked like strep.

We made an appointment with the pediatrician. Positive strep test. Scarlet fever. A rather large shot of antibiotics and a sucker later, and we were on our way back home to rest and recover.

Sawyer essentially missed the whole week of school. He has alternated between pitiful (see photo above) and seeming completely fine. His appetite is way off, but getting better. His sleep pattern is also way off (though his normal sleep pattern is anything but).

With the twins, it's always a little bit of a guessing game. They can't tell us what's wrong. Headache? Stomach ache? Throat hurts? Congested? You just have to watch and guess what might be wrong. We at first thought stomach, because Sawyer wasn't eating. Then maybe sore throat for the same reason. But he also had a loose tooth that was bother him, so that could have been the problem with eating. The fever could have been that nasty 24 hour bug that's going around (Xander was sick one day last week). We just don't know. And they can't tell us, which makes it hard to know what's wrong or how best to help them.

The good news is that each day he seems to be feeling better. And that we have an incredibly amazing school team that is always there to help us keep an eye on the boys and help us figure out what might be going on. Special thanks to Sawyer's aide Mrs. P, who is a registered nurse, and his teacher Mrs. K, who both noticed the rash and its probable cause.

Now, let's just hope our rough week is coming to a close and that both of his brothers avoid catching it (it's contagious).

Saturday, February 2, 2013

Snowy Saturday

Two snow days in two weeks, which is a little unusual in our part of the world. The boys were off yesterday because of rough road conditions, and it continued to snow all day on Friday and again today.

With big flakes falling, Connor looked outside wistfully.

"I wish we could go outside and play."

Normally, that's not my idea of fun. It takes a LOT of effort to wrangle all three boys into enough layers to make it outside. And keeping gloves and hats on is usually an ongoing battle.

But the big flakes were pretty. The boys had been stuck inside all day yesterday for the snow day, and again today with no plans to leave the house.

So I made the effort. After 30 minutes of wrestling everyone into several layers of clothing, including the dreaded hats and gloves, we were ready to go outside. Connor took off running. Buster tore out after him. Xander went out hesitantly. Sawyer stood on the doorstep and required a little helpful shove.

And then we made it out. For nearly an hour, which I consider impressive for my three boys. Connor would have stayed out longer, but their clothes were getting wet and their cheeks were getting red. I figured we had pushed our luck long enough.

Daddy, who had stayed inside to study for his last paramedic test, had hot chocolate waiting for us when we came back inside. Coats are still hanging up to dry, and a big load of laundry is still in the dryer.

But I think the boys had a good time.

The rest of the photos are here.