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Ben’s Happiest Time

  • Posted on July 4, 2014 at 10:00 AM

When Alex leaves the house, the Ben comes out to play. This is not to suggest that Ben doesn’t play when Alex is in the house or that Ben doesn’t play when he goes out of the house. Ben is a typical kid, at least in the sense that he can play wherever he is and will do so without the least bit of encouragement (as long as you don’t account “typical play” as the only kind of play).

Still, it’s hard to say who enjoys Alex’s respite time more. Alex has a blast, whether he goes with his respite therapist or whether he goes with my mom. Ben has a blast because Alex is gone. They both enjoy their time away from each other.

Now, when things are reversed and Ben is out of the house, Alex enjoys Ben’s time away, too. The difference is that Alex, while having more fun than usual, is also calmer than usual. He doesn’t have to worry about Ben bursting in on the scene and stealing his fun away. When Alex is gone, Ben has his fun without trying to be the least bit calmed by it.

I swear, these boys’ ability to aggravate each other is epic. The term “epic” has become so overused I’m pretty sure it’s not “cool” any longer; but really, there is definitely something epic about the Ben/Alex battle. There is the typical sibling rivalry, of course: They like many of the same movies, toys, and activities, but don’t want to share them with each other. It’s more than that, though.

Alex exacerbates Ben’s sensory issues. Ben exacerbates Alex’s sensory issues. They have mutually exclusive coping strategies. Ben’s been such a bully for so long that Alex has given up the nice-guy routine and let’s loose on him. Ben is more vicious, but Alex is bigger. Alex still loses unless he’s willing to go all out; luckily, he has a genuinely gentle nature; unfortunately, that means Ben wins more often. It’s sibling rivalry on autism and I don’t like it.

So, Ben’s happiest time is when Alex leaves and my happiest time is when they’re both having fun, even though it happens when one of them isn’t here. It’s not that I want one or the other out of the house; it’s just that I want them to be happy—both of them at the same time.

Summer’s going great, let me tell you.

Summer’s a Brewin’

  • Posted on June 13, 2014 at 10:00 AM

Willy’s last day of school was last Friday. Alex and Ben had school on Monday. Summer’s a brewin’ and things are already starting to get bubbly.

Alex and Ben continue to clash. All three boys compete for the computer. They all nitpick in their own ways and they all nitpick right back. Sometimes things escalate, but that’s getting rarer—at least for now.

On the other hand, my mother is currently unemployed, so she has more time to devote to respite. We also have two other respite workers/therapists who have been with the boys for a while now. We’ll make it through the summer, but not without our share of storms.

At the very least, it means I don’t have to wake up for the buses or field any more IEPs or other school related business. At least, not until the fall; unless you count Alex’s special education summer swim sessions. I’m still not sure what to expect with that.

A Taste of Summer

  • Posted on May 30, 2014 at 10:00 AM

Last weekend was a long weekend. Not only were the boys home from school for three days in a row, the heat index climbed enough for me to turn on the air conditioning. This being Wisconsin, I can’t help but point out that it was just last week that we had the furnace running at night. Of course, a house with better insulation and windows that can open safely would improve things, but I’m not making that kind of money yet.

More to the point, both Ben and Alex decided to be particularly irritable on the same sweaty day and lashed out at each other. Separating them was a challenge, because they both seemed inclined to take their frustrations out on each other. Neither one of them was particularly interested in being soothed or distracted. They went after each other, even though neither of them was the real source of their different frustrations.

I look forward to summers, because it means I’m not a “slave” to the morning routine regardless of my level of sleep (or not), which is particularly unpleasant considering I really do need a sleep study – if I can actually sleep for them. On the other hand, it’s nice for Alex and Ben to be separated for a good chunk of their waking hours, because they tend to get along better when they don’t get quite so much of each other.

Maybe this summer will go better. Maybe they’ll learn to like each other or at least not to hurt each other. Maybe. Maybe we need a plan B.

Epilepsy: The School to Summer Transition

  • Posted on June 19, 2013 at 10:00 AM

This school started with some big news: Willy was diagnosed with epilepsy, another neurological disorder to go along with his autism diagnosis.

Willy was a lucky kid when it comes to his epilepsy. The doctors’ first guess at which medicine would control his seizures was correct, and the dosage he needs to maintain control is relatively low. Now that 2013 is almost half over, I’m glad to say that he has been seizure-free throughout this calendar year. Many people with epilepsy aren’t so lucky or so easy to treat.

A big part of the success of this treatment, however, involves Willy remembering to take his pills in the morning and the evening. He needs both doses. He needs to remember every day. This is important.

It’s also easy to forget. When you feel sick, it’s relatively easy to remember to take your medications. When you don’t feel sick, it’s easy to forget. Willy hasn’t felt sick in many months, which is a really long time for him.

I was worried that the change in routine would mess things up. After all, Willy’s pill-taking revolved around his school schedule, and changes to that schedule tended to mess things up during the school year.

I’m happy to report that Willy has made the adjustment almost completely independently. He takes his morning pill when he wakes up, whenever that happens to be, and he takes his evening pill before he goes to bed, whenever that happens to be. He’s needed few reminders. He’s exercising almost complete independence.

I’m so proud of you, Willy! Great job!

Settling In

  • Posted on June 14, 2013 at 10:00 AM

I’m surprised at how well the boys have settled into their new routines here at home. In the past, this transition has been more of a struggle.

Will is a little sad for the end of school. He’s sad for his middle school experience to end. But he’s excited about high school. He’s slipping into a summer routine without a problem.

Alex is doing especially well. I expected, for example, to see a marked increase in pinching while he’s at home. Basically, pinching at home + the pinching he would have done at school. Instead, most of the time he goes through the motions, as if it were a habit, but doesn’t actually press hard enough to hurt. Sometimes, when he’s distressed, he pinches with genuine force. But the times he seeks me out have decreased markedly. The times he seeks his brothers out have decreased, though less drastically. Let’s face it, brothers can be very annoying.

I’m not sure how much Ben realizes school is over yet. His school year has been so unpredictable, it’s not like he can count on not going to school as an indication that school is ended. His empty backpack—which is finally, actually empty—should be a big clue. We’ve told him, of course, but he doesn’t respond, so I’m not sure how much he understands.

We’ve seen an increase in some behaviors with Ben, though I’m not sure we can chalk it up to school ending. Mostly, he’s decided to play out a seen from a video—I’m not sure which one—but it involves a script and an overflowing sink. We don’t mind the script, but the excessive water is a problem. He’s also thrown a few tantrums for indiscernible reasons. I’m quite sure he has a reason. I just have no idea what it is, which is, of course, frustrating for both of us.

Mark and I are adjusting as well. We were prepared, of course. That helps. But it still requires adjustment. Times like these, respite breaks (for the children) are all the more necessary. So are special times with us. Otherwise, the boys just get far too much of each other.

I do hope we get this change settled into place soon, because I’m hoping for another change in the near future.

Summer: It’s Official

  • Posted on June 7, 2013 at 10:00 AM

No, I don’t mean the official change in seasons. I stopped keeping track of that when I realized that these prescribed dates—determined, presumably, by the sun’s relationship to the earth—have very little to do with how seasons are actually experienced.

Summer starts when school ends.

Summer is here.

It’s time to break out the summertime routine and enjoy some sunshine. Or maybe cower inside away from the sun’s burning rays. Whatever works.

Change and Predictability

  • Posted on June 5, 2013 at 10:00 AM

Sometimes we know the change is coming. We can plan. I’m big on planning. We can foreshadow. The boys are big on foreshadowing. This is something we can handle.

Sometimes we don’t know the change is coming. Sometimes it just hits. No plan. No foreshadowing. Mark used to describe these situations as duck-and-cover moments.

Lately, we’ve experienced a lot of slow, known changes. Gentle shifts are easy to handle. Some of these are cyclic. The boys like those best.

For example, on school nights Willy usually only gets one reading or it takes too long to get him to bed. On non-school nights Willy gets two or more readings. This helps him to adjust to the change in his routine, because there is a predictable shift in the routine itself.

This is the last week of school for the boys. It’s a predictable change. We are foreshadowing. We are adjusting our plans. And we are building predictable shifts into the changing routines. The boys seem to be looking forward to the end of school. Their routines are shifting and changing, but the predictability of it is familiar and comfortable.

This too is a skill to be cherished.

Prioritizing the Parent

  • Posted on May 31, 2013 at 10:00 AM

I feel like I’ve been advocating, parent-style, for so long and for so hard this year that it’s been hard to find time to do the actual parenting I want to do with the boys. Sure, things come up and we have to deal with it. But the fun stuff… There hasn’t been much of that. With only a week left of school, it’s time to take a break from taking on the system and just enjoy my children.

Waiting on Summer

  • Posted on May 24, 2013 at 10:00 AM

I’ve had enough of this school year. I’m ready for summer. I’m ready for the boys to be home. I’m ready for a sense of predictability and stability to rest on my household.

This is an odd feeling. Usually, by this time, I’m ready for summer because I get tired of trying to live on other peoples’ schedules: like the start of the school day and the somewhat predictable arrival of the buses. I get tired of the early mornings and the rush to get ready.

But, nope, this time it’s the fighting with the schools and the unexpected calls to come pick up my kids. Even though those are stopped, the anxiety of those calls lives on. It could start up again any time. It’s not like there was rhyme or reason to it.

I’m ready for it to be done. I’m ready for it to be summer.

Paying the Cost

  • Posted on September 10, 2012 at 8:00 AM

This summer has taken a toll on me and my family. Summers are usually a time of more pronounced need—because the boys are at home more often if for no other reason. But this summer has been full of the unexpected. I’ve been scrambling to keep up, getting further behind in the process.

Regular family obligations. An unexpected diagnosis. Regular business obligations. Coursework. A new book contract. A pronounced need to further develop non-writing skills that support my writing. It’s all taken its toll. Simply put, I’m tired.

It manifested itself as an infection that spread from a tooth to my face. After weeks of pushing myself, my body finally pushed back. So, for over a week now, I’ve been forced to rest so that my body can heal. Slowly, the swelling has gone down and the pain has gone away. I’m almost recovered—though I’ll need to see a dentist to make sure it doesn’t happen again.

It’s times like these that I like of all my well-meaning friends, who are also parents of children with special needs, who have talked about the importance of self-care. It’s not that I don’t respect their wisdom—I certainly do!—but I haven’t found a way to put it into practice, at least not consistently. When everything is going so fast and there are always more things to do than can reasonably get done, how do you pull back and set limits? I honestly don’t know. But at times like these it becomes increasingly clear that I need to figure it out!

That seems to be the next thing for me to learn.