Wednesday, June 29, 2011

Another Day, Another Evaluation

Today was the day that both boys went for their speech therapy evaluation, the one that had to be completed before the boys could begin private speech therapy outside of what they already get through the school system. I'm pretty sure it's an insurance requirement, but regardless of who requested it or why it is required, it was today.

It was a typical evaluation. Both boys have limited speech, one more than the other. And that means most of the evaluation fell to me. The therapist asks me a series of questions (often variations of the same question) to assess their receptive and expressive language skills. I am essentially tested on how well I know my children and on what they are able to do. I'm handed a huge stack of forms (times two, of course, since there are two boys) and asked to simultaneously fill them out while continuing to answer questions.

Sigh.

I cannot tell you how much I hate the process. It's never the people or the places, just the process. And this one was no where near as bad as some of the big evaluations we've gone through - initial entry into the state program, the state university autism center where the first official diagnosis was given, initial entry into the school systems, re-evaluations for additional services. There have been so many.

The process just sucks. You're handed forms that ask the same question a thousand times, that require a yes or no answer when there quite simply is not one, and that ask for information from pregnancy through yesterday (which for our boys, is nearly six years)!

Every question twists the knife just a little bit deeper. It brings the concerns, the fears and the guilt, front and center. It clearly draws the line between where you are and where the world expects you to be. And it mocks the progress you know has been made. Because there are still so many "no, not yet" answers.

But the boys and I survived it. I still have a stack of "homework" - more forms that I simply did not have time to fill out in the two-hour interview process - to complete. But the boys did well considering it was a new place and a new face. They only tried to leave a few times, and always came back pretty easily.

A written report will follow, but I am not concerned about their eligibility. Clearly the boys have language delays and will benefit from additional speech therapy. It will start in two weeks (the first opening for two back-to-back appointments). The boys will start with one 30-minute session per week, one right after the other, and then we'll go from there.

The journey continues ...

Tuesday, June 28, 2011

Struggle

Brothers by here we wander
Brothers, a photo by here we wander on Flickr.

Summer can be hard on Sawyer and Xander. It lacks the same structure, the same routine that comes with going to school, of having to be at certain places at certain times on certain days. Connor and I love that freedom - sleeping late, making plans as we go. The twins, not so much.

One of our biggest struggles with the boys is always sleep. We really wish they needed more of it. Eight to ten hours a night, and that's pretty much it. They usually fall asleep sometime between 9 and 10 o'clock at night and are up anywhere from 5 to 7 o'clock in the morning. Usually.

On Sunday, Sawyer fell asleep on our two-hour drive home from the lake. At five o'clock in the afternoon. He didn't want to go to bed that night, and didn't fall asleep until well after 10 o'clock.

He was up at 3:45 that morning.

And I mean up as in wide-awake, not a trace of a yawn or sleepy eyes, awake. Josh got him some cereal and milk and let him go to the play room, where he was already headed anyway.

And it's been a struggle ever since. Staying up late, waking up in the middle of the night, sleeping in and then really, really staying up late (like until the middle of the night). He's actually still awake. And he's been in his room since 9 o'clock, except for a potty break which he tried to use to escape to the play room (no such luck, kiddo).

Xander doesn't have the same struggles, at least not to the same extent. But he also has them. An unexpected nap or sleeping in just an hour more than normal can throw him off for days. He was awake in his room for hours tonight, too, which is actually pretty rare for him. He'll probably sleep in and the cycle will start all over again.

Sometimes I tell people that they cannot be my children. I love to sleep. I can sleep for hours and hours and hours. If my children would ever let me. I'll take their eight hours and trade them for ten or twelve, please. Even just a few nights a week. Pretty please.

I think it would help their dispositions. And I know it would help mine.

Saturday, June 25, 2011

Summer Time

Jumper by here we wander
Jumper, a photo by here we wander on Flickr.

Though the boys have been out of school for nearly a month, it hasn't really felt like summer yet. I've been working on a major freelance project that has been taking up long days and nights, and it just wrapped up on Thursday morning. So it's only fitting that within a few hours after that, the boys and I were packed and on the road to the lake.

Now, summer has officially begun!

Connor, of course, has been enjoying summer a bit longer. He snuck down to the lake last week, thanks to Grandma and Grandpa. I knew he would have much more fun being the "only child" for a while at the lake, while I would have plenty of time to wrap up my project with one less little boy underfoot.

Now we are spending a long weekend at the lake, soaking up some sun and water and family time for a few days. Uncle Brian and cousins Austin and Kyndal will join us later today for the rest of the weekend. The boys and I will head back home tomorrow, only to pack Connor's bags with some more clean clothes and send him on his way again. He's off to the beach with Grammy and (great) Aunt Lynn for the week.

It's hard to be Connor, if you haven't noticed.

In truth, I am glad that Connor gets to have so many adventures. I know how often he has to be held back or kept from doing things that so many other kids his age are doing, simply because his brothers cannot do those things. I love that he has opportunities to go away with family members who love him and enjoy "spoiling" him as an only child for a few weeks here and there. I love that he has a chance for a typical childhood, even though it's not always with us.

Bring on summer - we're all ready for it now!

Monday, June 20, 2011

Touch Screen

Touch Screen by here we wander
Touch Screen, a photo by here we wander on Flickr.

For a while now, we have been thinking about ways to help Sawyer communicate. Words are few and far between for him, and though he seems to understand most everything you say, he certainly isn't volunteering anything yet. We're even pretty sure he understands most of the basic signs we try to use in addition to our words, but his signing also is pretty limited. His most effective communication is still taking your hand and pulling you to the location of what he thinks he wants or needs and then pointing to it or taking your hand and tossing it in the direction of the desired item. He also vigorously signs "more," which has sadly replaced "please" and the once "more, please" sign.

One of the things we've tried working with him on - still with little success - is using the mouse on a computer. You see, all of our boys love the computer, and while Sawyer is often content to watch Xander or even Connor as they manipulate the mouse and the home computer, he simply doesn't seem to understand that his hand will also work that mouse. We've tried lots of hand-over-hand, but he still won't touch it. He puts your hand back on the mouse and proceeds to point at the screen (thinking, we assume, of his touch-screen computer at school, which he operates with ease).

With that in mind, we talked about getting a touch-screen monitor for home. But they can be pretty expensive, and it would just be useful when we're at the house. So we did a little more research and started thinking about a more portable option. A touch-screen laptop was our first thought, but then we quickly moved on to the new tablets. Smaller, more portable, and many are starting to come out with some pretty impressive communication software. We're still doing the research on that end, about which software we think might be most helpful. There is a lot to consider, the costs range from minor to more than the average house payment, and we have a lot of different people we need to get in on that discussion - many of whom we haven't really worked with yet.

Changes. They do not come easily in our house, but lately it seems like we are full of them. The boys will all be moving to a new neighborhood school in a few months. The twins are leaving behind a wonderful preschool and an amazing team of teachers and therapists we would love to bottle up and take with us everywhere we go. But the real world doesn't work that way, so we're going to have to get used to new teachers and new therapists and a whole new team. And because this is a team that will largely be in place for the next six years or so, we need their input.

And because we're just so big on change lately, we're also taking it one step further. Up until this point, both Sawyer and Xander received their therapies first through a state program for developmental delays and then through the local school system. We have never moved beyond those services, largely because our schedule and our finances simply would not allow for it. But times have changed, and we think the boys need more help than they can get in the classroom or through the schools. The boys have an appointment next week for a speech therapy evaluation (because apparently they have to be evaluated before they can even be seen, despite the fact that they both have a clear diagnosis and enough documentation to make up a forest, but lets not get me started on the topic of evaluations and diagnosis and how need is determined in a completely different way for every single provider). Once the evaluation is completed, we expect therapy to follow. We hope that their new speech therapist will be a part of their team for the foreseeable future, and that means we want their opinion on the many different communication software options.

For now, we have a tablet with lots of possibilities for communication and the future. It is mostly for Sawyer, who is touched a little more deeply by autism and whose need has always been a little bit greater. That is not to say that we will not look into one for Xander at a later date, especially if it proves useful with Sawyer or if Xander's team thinks he might benefit from one. We are taking it slow, trying to weigh the positives and negatives of using a communication device.

But right now, in this moment, we simply have a new touch-screen computer that can be used at home or anywhere else (with wi-fi for some of the features). Sawyer is already displaying an aptitude for moving around the interface and getting to programs of his choice. He also is already displaying an ownership and possessiveness which is a little scary (see here).

One can hardly blame him though. As useful and functional as we think and hope it will be for him in terms of communication - it's also simply a lot of fun! All of us (with the exception of Connor who is on extended vacation at the lake, poor boy) have taken it for a test drive, and no one wants to put it down.

More screens. That part doesn't really make me happy. But I like to think that one day soon I will change my mind. I am waiting for the day when my quiet little boy tells us more than just what he wants - to eat, to drink, to swing or jump on the trampoline. I want to know what he thinks, how he feels, what he dreams about. And if the words are not there, then I want to help him express himself any way that he can.

And if it takes another screen (or two if Xander eventually needs one), then that's what we'll do.

Monday, June 13, 2011

Photos from the Park





Just in case you thought I got great photos of the kids every time I snapped a picture, I don't. Sometimes it takes several to get the one I really love. The last one in this series is actually the first one I shot, and it was my favorite (see it in better resolution here). As you can see, I made several other attempts to get a better one, but my subject just wouldn't cooperate. Darn kids.

Today was a great day in our part of the world - 70s and low humidity, which is down right unheard of this time or year for us - so the boys and I spent part of our day strolling up to the neighborhood park for a few hours of fun. The rest of the photos are here.

Sunday, June 12, 2011

Pool Party!

Pool Party! by here we wander
Pool Party!, a photo by here we wander on Flickr.

It's summer time ... and the living is easy.

Connor has always had a big personality. He's sociable and loves to be with other kids, and he's frequently invited to play dates and parties. Unfortunately, because much of our life is a divide and conquer approach given his brothers social limitations, he doesn't always get to go to everything.

Last night just happened to be one of those nights when the stars aligned. One of Connor's t-ball teammates was having a birthday party after their last game. And not just any party, but a pool party! Connor has been talking about it all week. Josh was off from work and didn't have other plans. He would stay home with the twins and put them (and himself) to bed early. I would talk Connor and enjoy some simple summer fun without the worry of having all three boys to watch.

The other thing I should mention about this particular party is it was a night party, from 8 to 10 p.m. after the regular pool hours had ended. It was going to be late, and Connor knew he was going to have to have a nap in order to go. He knew it, but he still struggled with it. He was in his room for more than two hours before he finally fell asleep, and that was only about an hour before it was time to get ready to go. So he had maybe an hour nap and then was a bear to wake back up at 7:30 last night.

But we finally got him up and dressed and moving. And he had the best time. He immediately found the slide pool, and stayed there with several of his baseball buddies (birthday boy included) until it was time for cake. After cake, he tested the kiddie area (less than two feet with lots of fountains). Next was the big pool. He jumped with some other kids for a while, but then wanted me to go with him to the really deep end. I had to jump in, too.

It was a fun night. Connor ran around and played. I could sit and talk to other parents without having to worry and watch every single move. It was rare, and fun.

Part of me wished we could do more stuff together as a whole family, but it would have ruined the night. The twins probably would have enjoyed a pool party like this one, with limited people and lots of freedom. But then we would have had to take turns watching the twins, and the area was open and uncontained. And no one would have enjoyed the night - not the twins constanlty being held back or us constantly having to do it.

So we do what we do - we divide and conquer. What we lack in overall family time, we try to make up for in individual time. Special moments, here and there, that we know each one will enjoy. Pool party wiht a friend, that's pretty high on Connor's list. And Connor and I had a good night.

No Training Wheels

Big Boy by here we wander
Big Boy, a photo by here we wander on Flickr.

Now don't let the photo deceive you - he can't actually ride that way just yet.

And yes, we are aware he's about to outgrow the bike. We saved the training wheels for when it passes down to Xander (and perhaps one day Sawyer, though he has never shown even the slightest interest in riding a bike). 

One day last week Connor and I spent an hour or so practicing, by which I mean I hunched over and held onto the back of the bike as we made several passes on the sidewalk in front of our house and our neighbors' houses. Connor is neither ready for me to let go, nor able to balance on his own just yet.

The funny part was just telling him we were going to practice. His immediate response was, "But what if I fall?" as if that would be the most terrible thing ever.

So we had to dig around and find the original safety equipment that came with his bike helmet - the matching knee and elbow pads. We haven't used them for much of anything yet, as he wasn't really prone to falling with training wheels on.

So the training wheels have come off, and Connor is starting to learn how to ride his bike. I have a feeling it's going to be a long, hot summer. And that I'm going to have an aching back for a while, too.

Thursday, June 9, 2011

It's Hot ...

It's Hot by here we wander
It's Hot, a photo by here we wander on Flickr.

It's really, really hot in our part of the world. We went from unseasonably cold and monsoon like weather to really, really hot weather. It feels like July, but it's only early June. And that's kept the boys and I inside more than we'd like in the first few days of summer vacation. We've been waiting until 7 o'clock or so to even venture into the back yard (when the sun is heading down and most of the yard is thankfully shaded by the large treeline behind our house).

It was an hour into jumping on the new trampoline and the boys all just fell down. Tired. Hot. Ready for a break. Icees couldn't even save them. It helped, for a little while, but they were quickly right back here, just laying on the trampoline.

Hot summer days. And nights. We'll keep trying, but we wouldn't mind a little break in the weather. We're kind of tired of the house already.

Just One More

On Deck by here we wander
On Deck, a photo by here we wander on Flickr.

The Spring baseball season is quickly coming to a close. The twins are applauding and cheering in the background, in case you can't hear them. Connor is despondent. When I told him that there was likely only one more game left, his little face just crumpled. The tournament game is Saturday, you see, and it's single elimination, which means our team of (mostly) new players, doesn't stand a chance.

"Just one more?" Connor complained. "How about fifteen more? Or a hundred more?"

Yes, that's really what he said to me. The kid would play baseball every single day if he could. He LOVES it.

And that's what makes it so sad that the season has been so terrible. I'm still saving my commentary on the league until the season is completely over, but let's just say it's been a rough season for the parents and the coaches. The kids are still having fun, which is saying a lot, after the season they've been through. And that's something, I suppose.

Monday, June 6, 2011

Yes, Yes We Did

Bounce! by here we wander
Bounce!, a photo by here we wander on Flickr.

We're in the process of making the back yard a little more fun for the boys this summer. Phase I - the trampoline - is in place. The boys have been bouncing quite a bit the last few days. Phase II - the bigger kiddie pool - is still a work in progress. Our deceptively level back yard is not quite so level. Daddy is having to dig out a rather large chunk of yard to try to level the area for the pool. It may be a few days (or weeks). You know how those back yard projects go.

But the boys are perfectly happy with Phase I for the moment. They have always loved trampolines. I will never forget the first birthday party we took all three boys to last summer. It was for a friend of Connor's, and it was an outdoor party on a mini-farm. There was an old school trampoline (no safety net) down under the hill, and my boys found it and found their spot for the entire three-hour party. They bounced and bounced and bounced. They did the same thing not long ago when they went with Josh to follow up on a construction project (an addition to an existing home) and that back yard also had a trampoline. They wish all of Daddy's projects had that feature, especially when they have to tag along.

Sawyer loves it the most, of course. He bounces and bounces, spinning in circles as he bounces, and always with his eyes closed and a huge smile spread across his face. You can just see the happiness on his face, and that is more than enough to make it completely worth the expense (and worth the risk of injury, sorry Grammy, our resident ER nurse who was not at all in favor of Phase I). Xander and Connor both like it, but they're our rough-and-tumble boys, and you have to watch them pretty closely or they will end up hurting each other playing chase and then falling on top of each other. Connor may or may not have gotten in trouble tonight for pushing Xander down and then attempting to sit on top of his head. Brotherly love, right?

The boys and I have two long months of summer vacation, and we needed some more toys in the back yard to survive spending that much time together. So far, so good ...

Sunday, June 5, 2011

Baseball First, Pool Second

Baseball First, Pool Second by here we wander
Baseball First, Pool Second, a photo by here we wander on Flickr.

Connor had a pretty great day. Baseball first (including the first win of the season, no less) and then the pool. Summer doesn't get much better than that! The twins were less impressed with baseball. We won't talk about how they not once but twice rocked the stroller so hard they unlocked it and spun around backwards. Yeah, that was us.

The boys were in for a better afternoon. Grammy and Pappy invited us out to the club pool for our first swim of the season. All three of them were excited about that and spent hours jumping and splashing in the kiddie pool. Connor even took a few turns on the slide and the diving board in some of the bigger pools. It was hours and hours of fun. The boys may or may not have slight sunburns from all the fun. They tend to not want to leave, and we spent about five hours in the sun and water.

It was so much fun that all of the boys ended up in bed early. Connor actually put himself to bed about 7:30 - and let me tell you, that never happens! Sawyer fell asleep on the ride home, before he even had a chance to eat his chicken nuggets or french fries. Xander was asleep within minutes of his head hitting the pillow.

It was a long, but incredibly fun day. A baseball win for one, and a day at the pool for the rest of us. The Oreo McFlurry wasn't bad either.

First Win

Hit Number Two by here we wander
Hit Number Two, a photo by here we wander on Flickr.

Two good hits for Connor, and a great day for his team. The Knights won their first game of the season, and won it pretty decisively - 12 to 1. Apparently early morning games (on the first day of Summer break, no less) agree with them. The boys actually ended innings by scoring too many runs instead of getting too many outs, and the whole lineup got to bat in both innnings. That's never happened. The boys (and the parents) were pretty excited to get that first win. They played well and had a good time, and you can't ask for much more than that. We'll leave our commentary on the league for another day.