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 ...

Struggle

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.

Summer Time

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!

Touch Screen

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.

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.