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The Long Weekend

  • Posted on November 28, 2014 at 10:00 AM

Now that the holiday is out the way, the boys are eager to enjoy their long weekend. There was a time not so very long ago that the disruption such a change represents would be traumatic. I remember times when each boy (though never all at once) would begin any long weekend by getting ready for school, as best as he could, all by himself as a sign of defiance, if you will, against the change in schedule.

Sometimes that simply meant putting on his backpack. Other times it meant getting dressed, including snow pants, boots and a winter coat, all by himself. I would coax, explain, and coax some more. Finally, I’d leave him be until he gave up on school and decided to play. One time Alex went around in coat, shoes, and backpack until well into the afternoon. Every time the front door opened, he’d go see if his bus had finally come. Eventually, though, they always gave up.

Things are very different now. Even though children with autism do not follow the developmental trajectory of their typically developing peers, they do develop—at their own pace, in their own time, and most definitely in their own ways. Now, the boys enjoy the long weekend. They’re perfectly happy to play all day long. So, that’s what they’ll be doing today and for the next two days. Still, they’ll be happy to return to school and their normal routines until the Winter Break comes.

The First Day

  • Posted on September 3, 2014 at 10:00 AM

The boys are at school for their first full day of school today. This is the first full day of the new school year. It’s the start of new things:

  • Learning new things in new classes,
  • Attending class with new students and (for Willy, at least) new teachers,
  • Meeting (or not) new expectations, and
  • Aligning to new routines and new patterns.

Even though some of all this newness is actually the same as last year, it’s still new because there has been such a significant break between the end of last year and the beginning of this year. Furthermore, all three boys have made substantial growth in non-academic areas over the course of the summer, so they’re like new people heading into what may be an old environment.

After the rush of activity to buy new materials, new shoes, and new clothes for the start of this school year, I’m ready for the boys to go to school. I’m ready for the quiet and the relative inactivity. I’m ready to get back to my studies and get back to work. I’m ready to adjust that I may get back into the “normal” pattern of things. Whether it’s normal to human nature or not, the school year makes up the bulk of our yearly time, so it’s the “normal” we experience the most.

As ready as I am for the boys to be back in school, I still feel the loss of the moment and I still feel an overwhelming wave of anxiety for my children. I close my eyes and bring up all the words I have about all my children and fill the darkness of my pictureless minds with all their wonderful attributes. I silently pray, “Let this be a good day. Let the people of their new world see them for the wonderful people they are and appreciate them for all of who they are.” I hold each child in my mind for a moment. Then, I get back to work. I have a full day of work and studying to fit into this brief period away from my children. I have adjustments of my own to make to this new pattern of things. It’s a “first day” for me and for Mark, too.

School-Year Anxiety

  • Posted on August 8, 2014 at 10:00 AM

After the muddled end of my last school year, I admit I’m anxious about starting up school again. I still haven’t quite gotten a handle on my fibromyalgia. My business is growing, but it’s growing primarily in a way that involves me doing more work to make it grow, as well as the work I need to do to provide for my family. I’m not up to a full day’s worth of work, quantity wise, even though it takes me a full day (or longer) to do it. I’m not sure how I’ll strike a balance between work and school once it starts, since both are priorities. There is so much that is unknown and I feel so unprepared, that there’s definitely an anxiety factor involved.

Willy, on the other hand, seems willfully unaware that school will start in less than a month. He will acknowledge it if I bring the issue up directly. He’ll discuss what concessions he’s willing to make with regards to new clothes, new school supplies, new shoes, and a new backpack. He’s willing to talk, briefly, about how he felt last year went. He won’t talk directly about his hopes and fears about the coming year. It’s difficult to weigh his anxiety levels, because he asserts a blasé attitude that seemingly belies his willfulness on the matter.

Alex, of course, is impossible to gauge. Honestly, I think getting back to the routine of school will be good for him. We have had something of a routine this summer, which has helped; but it’s a routine that spreads across the week, not over a single day, and it’s subject to far more change than the routines of school. This is not to say that he isn’t experiencing anxiety over the start of school. It’s more to say that it’s difficult to judge that anxiety relative to the buzz of anxiety he seems to feel most of the time. There are times when he’s completely free and, by noting those times and repeating the surrounding circumstances, we’ve even been able to increase them. However, the onset of anxiety is never so easily pinned to one cause or another, because he can experience both instantaneous and delayed reactions, depending on his processing during the moment. He seems to be handling the idea of returning to school well, but it’s hard to tell.

Ben is another matter. He seems genuinely unaware of the imminence of school. If I bring it up, his behavior reflects a belief that what I’m saying is not interesting, and therefore not worth attending to. This doesn’t necessarily suggest a blasé attitude similar to Will’s, because Ben’s hyper-focus can be very difficult to break through, even if you attempt to do so with something immediate, tangible, and desired. Ben has very much been “in his own world” this summer. He’ll zone into something desired and prolong it as long as possible. The easiest way to break him out of it (not that we do this on purpose or anything) is to give Alex the opportunity to do something he likes to do that annoys Ben. Ben will stop whatever he’s doing, wherever he’s doing it (as long as they’re both in the same house) and try to make Alex stop. If Ben cares one way or the other about the start of school, then he’s not saying so. I suspect he’ll care once he has to go back to focusing on tasks and timetables that other people set for him.

Of course, Mark is the stay-at-home parent who is not going to school, so the start of school means something different to him. I remember what that was like and, if he’s anything like me, he’s looking forward to the relief. After all, he’s borne the brunt of a difficult summer. He’s definitely ready for a break! And he definitely deserves it!

Time to Shop

  • Posted on August 6, 2014 at 10:00 AM

As those of you with school-age children will know, it’s time to do the before-school shopping, where you get all the school supplies the school says your child will need for the year, as well as a closet-full of new school clothes (if you can afford that sort of thing). In a household with children with autism, this ritual is modified. While the modifications depend entirely on the child, here are a few things that might occur:

  • Your child does NOT want new clothes—no matter how cool they happen to be. Even new socks and/or underwear can ramp up the before-school anxiety.
  • Your child does NOT want a new backpack—even if the old one is falling apart and held together with duct tape.
  • If your child MUST have a new backpack, then it MUST be the same style, size, and color as the backpack that is being replaced.
  • If your child MUST have new clothes, then the outfits should emphasize comfort and should not be stress-inducing or exciting; whether the clothes are “cool” or not may not matter to your child.
  • Your child may require a set of “school” supplies for home, as well as for school, because paper, pens, pencils and crayons are always welcome. Your child might “break into” his or her school supplies if a set of the most desirable items is not purchase for immediate, at-home use. This can also reduce anxiety about going back to school.
  • Your child does NOT want a new pair of shoes—even if his or her shoes are too small or have holes in the toes and in the soles.
  • If your child MUST have new clothes/shoes, then they should be as adaptable as possible, meaning that it is ill advised to get a new summer set and then, later, a new fall set. If possible, get a new set that will be adaptable until the next growth spurt, adding new items as the seasons change.
  • Your child may have absolutely no interest in going shopping with you; the added stress of shopping on top of the near-constant back-to-school stress may be too much for your child to bear. If your child says, “No” in any way, shape or form, honor that choice if at all possible.
  • If your child MUST go shopping with you, please respect your child enough not to drag him or her to multiple stores in pursuit of the best deals—the cost savings is not worth the stress this will cause your child. If possible, avoid peak shopping times.

For many children with autism, going back to school is stressful enough. For many children with autism, going shopping is stressful enough. Combining the two is a disaster waiting to happen. Please honor and respect your child’s needs during this stressful, anxiety-ridden time.

While I was napping…

  • Posted on October 2, 2013 at 10:00 AM

During my last post, I talked about my sleeping challenges. On Thursday, it became a problem, but only because a much bigger problem occurred while I was napping. You see, I stayed up until the wee hours of Thursday morning, slept for a while, got up, got the boys off to school, and then went back to bed to catch a quick nap before I started in on my work for the day.

While I was napping, Ben’s teacher and/or aide tried to take him to the bathroom. I don’t know what he was doing before they left or how they transitioned him, but it didn’t work. He threw a fit on the stairs. He ran into another room. He ran outside. He ran back into another room. He ended taking off all his clothes and his diaper. They couldn’t get him back into his clothes. Eventually, he urinated on the floor. He definitely walked through his urine. Someone claimed he rolled around in it, too.

I’m not sure when the calls started: when they couldn’t get him dressed or after he’d urinated on the floor. But they called the house once. They called my work number once. They might have called the cell, but it was turned to silent and I don’t have voicemail set up. Mark and I were both sleeping and we continued to sleep through these calls. Then, they called my mother at work.

By then, Ben had urinated on the floor. He still wasn’t dressed. She specifically told them to leave him as he was. By the time she got there, Ben was dressed and happy to be escorted out to meet her.

More Pinching and More Words and a Lot More Bananas

  • Posted on September 18, 2013 at 10:00 AM

While Alex is the happiest of the three boys to be back in school, his transition has not been without difficulties. His pinching has increased as—at least, it seems so to me—a coping mechanism to deal with the transition. He’s pinching more at home than he was over the summer and he’s pinching at school enough for it to be noted as an increase from the end of last year.

On the other hand, we’re also getting more sporadic words (pronounced better and applicable to the situation). For example, during Alex’s Ready-Set-Go conference, we started in his advisor’s classroom, even though Alex would have very little to do with his advisor. His teacher showed up—the same from last year—and he tolerated us lingering in the new room for a little while. Then, he took his teacher’s hand, gently pulled her toward the door, and said, very clearly, “Now.” So, we went to the room he knew.

We’ve been hearing sporadic words and snippets from videos or songs in other venues, too. But we’ve seen this before. This time I’m hoping the words will last and the pinching won’t.

In other developments, we were visiting with my grandfather over the weekend over at my mom’s house. As expected, Alex ate spaghetti without sauce or meatballs. Unexpectedly, Alex also ate two bananas. Alex has eaten bananas in the past, but it’s been a long time since he ate them for us. Moreover, has passed over the angel food cake, which used to be a favorite. I got more bananas for my mom Sunday night, so my grandpa could have his banana in the morning. I also got six bananas for our house. I had one. Alex ate the rest Monday morning. So, I’m going to have to get some more!

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.

Routine

  • Posted on December 7, 2012 at 9:00 AM

As the weekend comes around again, I very much want to avoid what happened last weekend. Last Saturday night, Willy didn’t take his anti-seizure medicine. He didn’t take it Sunday morning either. Late Sunday afternoon, I checked, and made him take a dose right then, and then pushed back his evening dose. But that means he still missed a dose.

While he didn’t seem to have any seizures, it’s still a risk with every missed/delayed dose. The problem is that routine is a key factor in remembering to take it, and our weekend routines are rather muddled.

We need to get a good non-school day routine in place to make sure that we stay on top of this. I’ve never been very good at the whole medicine regimen thing, but this is too important to muff up. And Winter Break is coming.

New Schools

  • Posted on June 8, 2012 at 8:00 AM

We expected Alex to go to a new school next year.  It’s time for that oh-so-fun transition between grade school and middle school, and we’ve been preparing him for that transition for months now.  What we didn’t expect was for Ben to move to a new school in the middle of his grade school years, but apparently that’s exactly what he’s going to do.  And we left ourselves little time to prepare.  We had a few days to get a few pieces in place and we’re going to start acting on those pieces before school starts next year, but for a little boy that struggles with transitions it doesn’t seem like enough.

Yet, I can’t deny the need for the change.  Ben’s needs cannot be met—at least not in a progressive, developmentally appropriate way—at his current school.  The new school should be able to meet those needs and may bring new insight that leads to new solutions.  The only thing is that the act of transitioning Ben through such a major change could derail what progress he’s made this year.

So, we’ll bear what we have to bear and make it as bearable as possible for him.  Meanwhile, Alex seems to be excited—not anxious—about his impending transition.  Hopefully that lasts through the beginning of his first year in middle school.  He certainly ended this year with a fun, exhausting bang!