Snapshot Sunday

Happy boys ... pretzel snack, water bottles and their iPads and headphones ...

Christmas Comes Early

After our car was broken into a few months back, and the boys beloved iPads were stolen, we decided that an early Christmas gift was in order for the twins. New iPad minis and wireless headphones for all (Connor still has his new cell phone from the summer and his Kindle, so he just got the new wireless headphones).

I'd say the boys are pretty happy with their early Christmas.

Fourth of July (continued)

With all of the recent rain, the big city fireworks display fell a little short and the boys were disappointed. They all LOVE fireworks, especially the twins. So we looked around at some other city locations to see where we might see another show with better weather on the reschedule dates for those who had cancelled (because of said rain issue).

Josh was working, so the boys and I loaded up in the car and made our way to a neighboring county for another fireworks show. We had a picnic spot on the hillside, good fair food snacks (hello, funnel cake with powdered sugar), and an American flag to wave (a must for Xander). The boys also had their beloved screens to help keep them occupied while we waited for dark and the show ...

Fourth of July

Nothing like an impromptu front yard fireworks display (the neighborhood golf course was putting on a show that we didn't know anything about, until we started hearing them). Our boys love fireworks, so we sat on the front yard / sidewalk to watch the show (or video them on your iPad, if you're Xander) ...



After the show out front, we moved to the back yard for our own fireworks (mostly sparklers, a few shooting rockets) ...



Connor wasn't worried about a few rain drops ...

Progress

Progress comes in many different shapes and forms, especially when it comes to our boys. This little picture is a HUGE, huge step forward.

Those letters are Sawyer's.

Let me say that again. Those letters are Sawyer's. This is the little boy who hates any kind of fine motor activity. A kid who has never liked coloring or writing. A kid who has just recently, at the age of seven, shown an interest in letters at all.

And those are his letters. He wrote, from memory, "Viewers like you (in orange)" and "Thank you (in green)". He's learning the phrases from his brother's drawings and writing, but he's replicating it completely on his own from memory.

Letters. Words. Phrases. Write now it's just duplication. But someday ... someday it could be communication. It could be describing something he likes. Something he wants. Something he feels.

Huge.

None of this would be possible without all of the amazing people in place on "Team Sawyer" - both at school and at home. His teachers. His therapists. His aides. So many people have played a role in getting him, and us, to this point.

Special thanks are definitely in order to his private occupational therapists, Ms. A and Ms. J, who started him on a new writing program over the summer because they thought it would offer a meaningful way for him to communicate outside of his current signs, gestures and his iPad software. We moved away from just Handwriting Without Tears to a box and arrow system. The visual and spacing really made a difference for him.

Letters. Words. Phrases. That's my boy.

Back to Baseball

Spring season has started. First game was on Friday, second game on Saturday. Two wins, no losses. A lot of good batting, some pretty good fielding, and still a work in progress. Connor plays most of the game at catcher, which he loves (involved in every single pitch, of course). He also plays center field and third base part of the game. Mostly he bats, in the middle of the lineup, and so far has been sailing it over the outfielders heads on most of his hits.

The twins are less thrilled about the start of baseball season. But we pack our camp chairs, our cooler of snacks and our iPads. They survive.

A few other photos from Saturday's game are here.

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.

Completely Random

As I was downloading pictures from the boys' recent birthday, I realized there were still just a few more left from the last day of our winter beach vacation. It was cool and rainy, and we spent a big part of our day alternating between screens and the indoor swimming pools.

These pictures made me smile, because clearly the boys have come a long, long way at making themselves at home in unfamiliar places. Sawyer, in particular, has no trouble making himself at home anywhere.

The iPads definitely help, he says.

And the headphones, well those help everyone else. Because I'm pretty sure no one else wants to hear Cars or Wall-E pause-play-pause-play for hours at a time.

Trust me.

Winter Vacation

You may have noticed the new photo at the top of the blog. The other one was just three or four years old. Finally, we have a group photo of all three boys that is not staged or pieced together in PhotoShop. A magical moment in the middle of our winter beach vacation, where all three boys were loving our trip to the ocean.

It was a great trip. Special thanks to Grandma and Grandpa for inviting us, and for helping us take care of three little boys (especially the two who liked to get up much too early). The rest of the photos from the trip start here.

Beach. Pool. MyPad. Lunch. Bed.

That's how Xander would sum up our trip.

And it's a pretty good summary. The weather was nice, with several days in the upper 70s and even one day in the 80s. There were a few cooler days in the 60s, and even a few days with clouds and rain. But we still had a good time. We made several trips to the beach, even though the water was on the chilly side (mid-60s at best). We made several trips to the pools (both indoor and outdoor, complete with water slide and lazy river). We had our screens (iPads for the twins, iPod Touch for Connor, television and wi-fi computers for the rest of us). And we had lots of good food. Not quite enough bed, especially with the sleeping arrangements and Sawyer's unpredictable sleeping patterns.

And now we're back home. Slowly finding our way back into our routine.

School. Work. Therapy. Homework. MyPad. Lunch. Bath. Bed.

I'm pretty sure we all like last week's routine a little bit better. But so it goes.

Thanksgiving with Cousins

Cousins, a photo by here we wander on Flickr.

Call me brave. Or stupid.

The plan was that Josh and I were going to take our boys and their cousins to Thanksgiving in the western part of our state.

That was the plan until Josh got a stomach virus in the middle of Wednesday night and ended up staying home sick in bed (on the best eating day of the year, no less).

The cousins had arrived the night before for a sleepover. So I had three older kids who did not want to go to sleep until nearly midnight. And then I had five kids to wake up, get dressed and fed, and out the door by 9 o'clock.

And around 9:15, we headed out. Just me and five kids. But it turned out fine. Traffic is usually light Thanksgiving morning, and there's a lot of Interstate travel, so you move quickly. The twins were a bit noisy in their seats just behind me, but the three older cousins did well in the back of the third row seat. Austin might have complained a little as he tried to do homework on the bumpy stretch of road ever (old concrete expressway, so there were big bumps at every break).

We enjoyed our first meal with Grandma's extended family - my aunts, uncles and cousins. Aunt Mary and Aunt Cova had an amazing meal prepared for everyone.

We took the kids outside for a little energy and movement break. Nearly three hours in the car was a bit long, especially so early in the morning.

Afterwards, the three older cousins went with Grandma and Grandpa back to the lake for the rest of the weekend. The twins and I headed back the way we'd come, to stop in another city and visit with Josh's extended family for meal number two.

We broke out the iPads as soon as we hit the basement. Sawyer had fallen asleep somewhere along the drive and was less than thrilled to be woken up anywhere but our house. The boys were hungry and yet again assaulted by tables full of food they wanted but could not have.

So we headed to the basement. And iPads were brought out for the first time of the day. I opened the boys cooler for more of "their" food, and we visited with the other side of the family.

It was a good day. But a long one. And the back of the truck was filled with take home plates. One for Josh, who hopefully will feel like eating again sometime soon. And one for Uncle Brian, who was staying home to recover from surgery early this week.

We stopped at Uncle Brian's around 10 o'clock that night to drop off his plates (yes, plural). And we finally made it home and the twins into bed sometime around 11 o'clock.

Happy Thanksgiving!

Back Home

Our day started really early. Though 5 o'clock and I are not really good friends, Sawyer is generally awake that time of the day. And by generally I mean on any day that you don't have to be anywhere at a certain time. Because on those days, that's when he likes to sleep in. Like today. When I had to drag him out of bed at 5:45.

We arrived at the surgery center shortly after 6 a.m., where we filled out more paperwork and signed more consent forms. And then we waited. Once we were called back, they went over the procedure and then we signed more papers. And then we waited again. Then the anesthesiologist came in to go over their part. And we signed more forms. And then we waited again.

About 7:45 Sawyer was taken back. We let him keep his iPad with him, to make the transition easier. He looked back over his shoulder a few times, as if to say why aren't you coming with me, but he never cried or complained. He just went right back to his movie on his iPad.

Fifteen minutes later, I was called in to talk to his ENT. The procedure went well. Only one stitch required, just to minimize excessive spreading. It will dissolve on it's own, so no removal required. In addition to the anesthesia, they also using an injection to numb the area under his tongue. His doctor told me again how he thinks it will be beneficial long-term for Sawyer, as he had already seen increased mobility. Recovery is only expected to last through the day.

I was sent back to the waiting room for another 10 minutes or so, then I was called back into the recovery room. Having warned them that he could be aggressive if he woke up in a strange room with strange people, they wanted me there with him as he woke up.

Immediately we saw him sticking his tongue further out of his mouth than he had ever done before. He also was sticking his fingers into his mouth and licking everything in sight. Our challenge during the day is going to be keeping his hands out of his mouth and also to keep him from licking everything he sees. He definitely has a sensory and/or texture issue with the procedure, at least initially.

The good news is he seems fine. A little grump, especially with all of the reminders to keep his fingers out of his mouth. But he's already finished two Gatorade drinks, a few popsicles, and even some applesauce. He passed on the ring pop (very unusual), but picked it back up after he finished the applesauce.

We're taking the rest of the day easy - watching some favorite animated movies on the big screen and snacking at will. The free-flowing drinks and snacks, he's all for. The constant monitoring by Mommy to keep those hands down, he could do without.

All in all, a successful day. Most likely he will return to school tomorrow, and we will follow up with the ENT in a few weeks to make sure all is healing well. And we'll hope that the procedure not only increases mobility (which it already has), but that it also helps with long-term speech production.

Just another day in the life ...

A Tale of Two iPads

We bought our first iPad nearly a year ago. It was bought for two reasons. The first was that we wanted to explore communication options for Sawyer, who is still largely non-verbal. The second was that we wanted to have a touch-screen computer in the house, also for Sawyer, because he has not yet mastered the use of a mouse. I guess you could say we bought the first iPad for Sawyer. His brothers could also use it, but it was primarily for him.

Right after we bought the iPad, we bought two applications. The first was an inexpensive PBS Kids application (which I bought only after realizing iPad does not support Flash player, which is the base of the PBSKids.org site all of our boys like to play games on). The second was a rather expensive communication software, Proloquo2go.

One iPad, many functions. That was our thought. Or perhaps our hope.

Six months in, we began to see the error of our ways. Sawyer absolutely understood the communication software. He could manipulate it as well as any of his favorite web sites or any other computer program, finding items buried four or five screens into the program with no trouble and very little time.

The problem, you see, was that it was his least favorite part of the iPad. Who would want to use communication software, when you could easily tap out to a screen full of fun apps for puzzles and art and games and animated stories and even movies?

Both of our twins have struggled with verbal communication. But it has been many years since either of them have struggled to communicate. Xander uses a lot of memorized but still functional scripts. Sawyer has always used pushing or pulling or pointing. They have no trouble letting you know what they want, or making a choice that is presented to them. They also have no trouble letting you know if they like something or they don't. It is the words, the expressive language, that have been so incredibly hard.

And both of the boys are incredibly rational. If they can communicate without those words, why should they make that extra effort. Why use the communication software to say "I want some milk, please" when they can simply walk to the refrigerator and make the selection.

And for right now, perhaps that's fine. But we have to look at the bigger picture. As scary as it sometimes is, we have to look down the road into the future. Communicating with family is one thing. They know you, they learn your behaviors and understand them. But communicating with the rest of the world is another thing. And you have to work toward that independence, toward the opportunity of a life of their own that someday will no longer include you.

So we bought another iPad. We were determined that Sawyer would not only know how to use the communication software, but that he would actually begin to use it on a regular basis. It will open up so many possibilities for him, not only at school, but also in life.

The first iPad, the one with the white drop case, is Sawyer's communication iPad. We have taken absolutely everything off of it that we can. It has no games or puzzles or remotely fun applications anywhere on it (we had to turn off iCloud, of course, to prevent all of our apps from automatically reappearing every day). It has Proloquo2go. And that's it.

This iPad is significantly less fun, and it is also in less demand. It can be left out without fear of fighting or disappearing. It still goes with Sawyer every day to school in his back pack.

The second iPad, the one with the black drop case, is the touch-screen computer. It is also mostly Sawyer's iPad, though all of the boys have the option of requesting this as their screen choice from time to time. It has all of the fun apps installed - the puzzles, the games, the drawing programs, the WordWorld video series, PBS Kids, Angry Birds ... you name it, it probably has it. The second iPad, the fun one, stays at home.

And though we were not crazy about the expense of two iPads (and two expensive but totally worth the investment drop cases), we have seen dramatic improvement. Sawyer is using his communication software much more than he ever has before.

There is some other good news. When you use the same Apple ID and iCloud, the apps appear on all of your Apple devices, even your iPod Touch. So we actually have Proloquo2go on three devices at home, and we only had to pay for the expensive app once. We can also customize each one differently if, for example, we wanted to set up one of them for Xander.

Right now we just use Proloquo2go for Sawyer. We use it to let him make choices, like what he wants to eat or drink. We use it to help him with his private speech therapy. It has choices for free play, and folders for taking turns or answering yes or no questions. We use it to help him at school. He has folders for calendar and weather - two of his favorite things to do at school. He has folders we can use for learning and testing - like uppercase letters, lowercase letters, numbers, colors, even money.

It's still a balancing act. We encourage the use of the software, but we also still work toward verbal language. He is doing very well with beginning sounds, and even a few blended sounds. Just yesterday, his speech therapist told me he is following the appropriate progression of sounds, just at the very delayed age of six rather than one. He is working very hard, both at trying to communicate verbally and to use the communication software. We ask for and expect both. We are happy to provide the communication device and give him more ability to express himself with words. But we also hope and work toward the day when his words will eventually come back.

Better Late Than Never ...

New & Improved, a photo by here we wander on Flickr.

No, you're eyes do not deceive you. Those are two very large cracks all the way across the iPad screen. And those are just the ones you can see in this photo.

Let's just say the pretty green cover that we got from the Apple store was far from functional when it comes to a five-year old. Especially one who likes to jump and bounce and never really sits down for more than a few minutes at a time (I know he's sitting in the photo, but trust me, it didn't last long).

What we should have done after leaving the Apple store was do some online research and find a better cover. And we did, just a few months after the fact.

After the iPad had been dropped a time or two.

And not, as you might think, by a careless little boy. No, usually it was by a determined little boy trying to fight off one of his brothers who were attempting to snatch it out of his hands. Yes, that's when it usually falls to the ground. Or the tile floor, as it were.

So now we have a really great cover.

We'll eventually get the screen replaced. But for now, it works. And really, why not make sure the boys have all the cracks they can get on this one before we go get another one to start on. Right?