While we’re still working out the kinks of getting Brandon and his little brothers to school, I’m sure we’ll get a handle on that.  Of course, afternoons are a bit trickier.  See, I’m used to having to get the boys ready for school in the morning, so changing the timeline and adding a few extra steps—while not convenient—is manageable.  In the afternoons, when it’s time to pick up the boys, is something different.  Before, it was a matter of Mark waiting for the buses.  If he had to be somewhere else, I’d wait for the buses.  Now, before the buses even come, I have to be out the door and at the school.

The timing is different, and this makes a difference.  For one, when I’m sleeping during the day, this time is right when I’m usually sleeping.  If I’m working during the day, this time is right when I’m knee-deep in a project.  We’re talking years of habit here.

The boys like to see me when they come out that door, especially if it means they get to leave before the noisy rush of their peers’ departure.  The trouble is actually getting me there!

So, I’m trying to adjust.  I’m trying, I’m trying, but I’m not really adjusting yet.  The fact that my workload is higher than it has been in a long time isn’t helping.  Every moment is important.  Every project is intense.  So, I’m trying, but this habit is difficult to change and now isn’t a particularly good time to change it.  The middle of the afternoon is not a cue for me to stop working or stop sleeping, but it needs to be.  I figure, by the end of the year, when it’s all over, I’ll have gotten it right.  Of course, by then, it’ll be time for another change.

Until then, we’ll keep trying.  Handling each new bump in the road—like today, when my mom will be picking up the boys—as it comes, as best we can.

First, a medical billing and coding blog has compiled a list: “50 Great Twitter Feeds for Autism Support.”  Some may be familiar to you, others may be new.

Second, I was contacted by Jamie Sue Austin of The Barefoot Review, asking for support for this literary magazine.  The Barefoot Review is a literary magazine/e-zine for people with disabilities and their families, friends, and caretakers to express their feelings and share part of themselves with the reading public.  This magazine is published bi-annually, and the first issue (Winter 2011) is available.

Please check out either or both of these new resources and let me know what you think!

Because, you see, I do make schedules for myself.  They vary from day to day and are often less dependent on time and more dependent on accomplishment.  I like to break down whole tasks into parts.  For example, a post is three steps: 1) write the post, 2) polish the post, and 3) post the post online.  I schedule each step separately, but in order, with the others.  I like to finish one step before I’m interrupted by something else, unless I have a need to multitask, in which case I still complete one task before I move on to another task in the same set, which may occur at a different point than when I complete one task in a different set.

Of course, if I have something scheduled for a specific time (or even a general time) I work on my lists of accomplishment-based tasks until they push up against the time constraint, and then I switch gears.  Ideally, I will complete any accomplishment-based tasks I’ve started before switching gears, and I’ll avoid starting new tasks if I don’t think I have time to complete them.

Most of my days are broken down in a series of tasks, separated into sets, completed as I am able, but in order.  What doesn’t get done today is moved to tomorrow or one of the upcoming days.  When the workload gets to be too much, I take time off to play—or to decompress, as the case may be, since sometimes playing is more work than I can handle.  And, lately, I’ve been scheduling in more decompression time into each day.

But, all of this is just the setup.  The point is I am busy.  There are few times in any given day when I’m not doing something.  This is a problem, because there are inevitable demands on my time that are not scheduled.  These demands are often perceived (by me) as interruptions and I don’t like interruptions.

For example, I’m in the middle of a set of business tasks and I take a bathroom break.  If the boys are home, then I am almost always accosted by one or more of the children as soon as I come upstairs.  Not only does this interfere with my ability to get to the bathroom, I perceive this as an interruption.  Interruptions make me surly and of a sour temper.  Yet, at least in theory, spending time with my kids and being available for my kids is a high priority in my life.

Dissonance ensues.

Again, my days are full of tasks.  There is little time set aside for not doing, because there are few days when I get through all of my tasks and have time left over.  It has been weeks (maybe months) since I’ve had time left over.  This is because, in part, my business is doing better, so that’s a good thing.  As our country slowly recovers (sort of) my family’s economic situation slowly improves.  All to the good.

Yet, this has also been a time of many demands on my time, some of which are unexpected and unplanned.  My mom is in the process of buying a house, so instead of coming over and doing respite as per usual, she stays home to clean and pack.  That’s fine, at least in theory, but when this happens without forewarning, when I arrive home at 8pm from a much needed shopping trip (groceries and the like, not “therapy”) to discover that the rest of my night is going to be spent performing unexpected tasks in a rush to get the boys ready for bed, that’s kind of a problem.  Not only do I have new things to add to my lists of tasks, not only do I have more incomplete tasks that were already on my lists, but I’m out of sorts with myself.  The resulting stress means I am able to do even less of my original set of tasks than I would have been able to do with only the energy spent on the new tasks.  Plus, the boys get to bed late, because I started the new series of tasks later than I should have and would have done, had I but known that I would have been doing them.

Now, it’s not that my mom’s decision to stay home and work on her own things was at all unreasonable.  It’s not even unreasonable that she, thinking that she’d be able to do both, postponed her decision until after I had gone to the store.  After all, there was no way for her to know I would be going to the store, because I didn’t even know when I was going to the store.  Again, those decisions are often based more on my rate of task-completion, not a specific time.  So, the point isn’t that my mom did this thing that set my evening off in the wrong direction, the point is that such a change sends my evening off in the wrong direction.  And the busier I get, the worse the stress effects me.

Another example is when Brandon, who is more active outside the house than his brothers, interrupts my work to ask for a ride.  Suddenly, I’m on the spot to do something that I wasn’t expecting.  Now, again, it’s not that I don’t want to give Brandon a ride.  It’s that 1) I didn’t know I was going to be called upon to give him a ride and 2) I had no warning of when I was supposed to fit this into my schedule.  Brandon is getting better at this, and he’s now letting me know at least a few hours in advance that a ride will be requested and providing me with an estimated time.  When he knows in advance, he’ll even inform me in the morning or the day before, which is very much appreciated.

But, again, the point isn’t that these interruptions and unexpected changes happen—they’re going to happen, as last week with Ben proved, even if everyone in my daily life does everything possible to prevent it from happening.  Things change.  The unexpected arises.  I will be interrupted.  And, in theory, I’m okay with that.  The point is that it has an unfortunate effect on me and that effect is getting worse and I don’t like it.  The effect, my reaction, causes dissonance (which also makes it worse), because the reaction is inconsistent with my values.

Any ideas on how to solve this that doesn’t involve getting less busy (because that’s not likely any time soon)?

Okay, so technically that’s not a problem, nor is it something that is just now being revealed.  What has been revealed is Ben’s ability to escape from yet another harness when riding the bus.  Being the bright boy that he is, it was only a matter of time and, frankly, I’m surprised it took him this long.

So, here’s the real problem.  The bus staff (there’s a driver and an aide) cannot manage Ben’s behaviors without the restraint provided by the harness.  When the aide helps another student on or off the bus, Ben uses the moment of “distraction” to escape from the harness and wreak havoc.  Now, as far as I knew, the harness was only a temporary strategy (for reasons that are now blatantly clear) and that other measures would be put in place to help Ben learn appropriate bus behaviors.

It is possible.  As soon as Ben learned how to undo his seat belt on his own whim (versus upon our request), he did so with reckless abandon.  It was a heady feeling of freedom for him to be able to unbuckle his seat belt and start moving about while the car was in motion.  But that freedom was not allowed to last.  We “broke” the habit by not tolerating it, by putting him back in his seat, and by having a responsible person sit next to him in the intervening period to help him learn to stay in his seat.  It was work.  But it worked.

For some reason, I assumed the bus staff would do the same.  I assumed they, as a bus hired (by the school district) specifically to transport children with special needs, would have staff (hired by the busing company) that would receive adequate training to handle inevitable situations.  And this situation was inevitable.  Restraints help, but they should not be intended as a long-term solution, because they don’t work as a long-term solution.

Instead of dealing with the problem (the unwanted behavior of getting out of his seat), once again they’re treating Ben as the problem (kicking him off of the bus for the rest of the year).  So, we have a new routine to develop and a new entry into the school at a time when Ben really needs as much predictability as possible.  So far the adjustment is working (more or less), but it’s one more problem that could have been avoided.

My “sneak peek” at this material was immediately helpful.  It was proposed that we start the meeting off by going over Ben’s existing Behavioral Intervention Plan.  As per the book, I countered by saying that I would prefer to start by describing (or having described to me) the behaviors that triggered this meeting.  I asked questions to gain more information and I discovered that last week (the week of the bad behaviors) was a major transition for Ben.

You see, Ben had been struggling.  He wasn’t making enough progress to meet his goals.  So, because Ben needed it and because they would have an “extra” person for a limited amount of time, we started an experiment in which Ben would receive one-on-one support and would be in a smaller, less busy environment outside his special education classroom.  The week in question was the week they were transitioning him back to the special education classroom.  He was still getting the extra support, but he was getting that support back in the super busy classroom.

We also learned that the one-on-one support outside of that environment had been working.  His aggressive behaviors had decreased and his educational gains had increased.  In transitioning him back to the busy environment before he was ready, his aggressive behaviors had gotten worse.  So, basically, Ben was being “punished” for bad behaviors that were triggered by a situation outside of his control that adversely impacted his educational progress.  In other words, he was trying to tell us in the only way he had available that he was not ready to go back into that busy classroom—that place was too overwhelming for him to function in.

As we discussed what to do with this information, I pointed out—in a non-confrontational manner—that the only reason we couldn’t continue with what was working was because the district was experiencing significant financial hardships.  The budget was too tight to provide Ben with one-on-one support.  It was also too soon to transition Ben back to the classroom.  And, once I’d put it that way, it was suggested that Ben should continue to receive the one-on-one support that he needed, and that he could continue to receive this support.

This was a major victory for Ben.  This was exactly what he needed.  Then, the only thing left to discuss was whether kicking Ben out of school was an action taken too soon.  See, as you might remember, when Ben saw me he was better.  Then, I took him home.  We determined, if the need should arrive again, that I should try calming him down to see if he could stay.  That way bad behavior isn’t rewarded with a break from school.  We also discussed not sending him on an all-day field trip.  And, we determined that sending him and Alex to school when their classes would be gone on a field trip I’d refused to allow the boys to attend, would be a mistake, because they’d be going to school, but everything would be different—so they’re both staying home that day.

One more thing was brought up and that was the question of placement.  This one-on-one support is the last trick in the bag of resources available to this school.  The district representative suggested that, after we tried this for the rest of the year, we should consider the possibility of placing Ben in a different school next year.  So, there will be (at least) one more meeting this year.  *sigh*

So, I went to the school to get Ben.  The naughty Ben transformed into squealing, wiggling, joyful Ben as soon as he saw me.  I learned that Ben had been pinching and (I think) trying to bite his peers, and that these behaviors were worse than they’d been.  While we do see some of the aggression they saw at home, what we saw that day wasn’t any different from usual.

The next morning was a bit rough, because the bus arrived while Ben was engrossed in the computer.  This abrupt transition was unpleasant, but I managed to get him on the bus.  Later, after I fell asleep (after a night of mostly not sleeping), I got another call.  I had to go pick Ben up again.  Same bad behaviors, same transformation, same typical day at home (despite the change in schedule).

That alone was enough to make me worry and wary, but there’s more.  Not only did I have to take Ben home, but Ben wasn’t allowed back until we had a meeting.  They didn’t use the word “suspended,” but it certainly felt like my son was being suspended.

So, Ben spent the last hour or so of Tuesday, half of Wednesday, and all of Thursday and Friday out of school.  (We had our meeting Friday afternoon.  Today is his first day back.)

I’ll tell you about the meeting in another post, but first I want to share my worries and my wariness.

First, we have a child who, while verbal, cannot effectively use language to communicate novel ideas.  If something is wrong in a particular environment, the only way he can communicate that is through his behaviors.  His verbal and written communication skills simply are not adequate to tell us something that isn’t a part of his carefully developed rote lexicon.  For example, Ben can tell us he wants ice cream, but he can’t tell us that he’s overwhelmed.  Ben can tell us he wants to go outside (to play, though he doesn’t say that part), but he can’t tell us if he’s being abused.  To communicate these more complex issues, all he can do is act out.

Second, Ben’s school has been undergoing a lot of staff changes lately.  There are a lot of new people in that building, and I’m not even sure how many there are.  This means there are people who are not tried-and-true working with my son.

Third, there have been a lot (at least, from my perspective it seems like a lot) of stories in the news about kids, particularly kids without effective communication skills, being abused in school.

So, I bet you see where I’m going with this.  You know that perseverating thing that autists tend to do—I do that, too.  My mind comes to a logical possibility and gets stuck, especially if it’s really bad or really good.  For those who might not have gone to the same place I did, let’s do the “math”:

1 (Ben doesn’t want to go to school.) + 1 (New people.) + 1 (Opportunity for abuse.) = 3 (Momma bear has claws, and teeth when necessary, and if someone is abusing my son I’m going to tear them apart!)

Half of Wednesday, all of Thursday, and half of Friday were spent perseverating on my mental arithmetic.  Now, I kept telling myself there were other possibilities, but my mind kept going back to this possibility.  Luckily, I was wrong.  Sometimes I just love being wrong!

Participating in the swimming portion was ruled out; we agreed that Willy was not a strong enough swimmer to participate safely.  In order to participate in the biking portion of the event, he would need some modifications.  They’re going to help him train at school, during school hours.  A special therapy bike was discussed, though I don’t know if it’s going to be used.  He’ll be training for the running portion before school with the other kids.

So, it’s started.  We have a plan for him to participate in modified and reduced capacity, so that he can participate safely.  I signed the form.  And he’s ready to go, still enthusiastic.  He’s doing it for the fun of it, and because he’s heard enough about the importance of maintaining a healthy body that he’s willing to work for it.  I’m proud of him.

But still, in the back of my mind, I worry about that other thing.  Neither Mark nor I are athletes; Willy’s coordination and grace is not much of an improvement on us.  I’m worried for him.  I don’t want to stand in his way.  I don’t want him to think we don’t believe in him.  But I don’t want this to be a mistake, either.  Willy’s survived school with few incidents of bullying, at least those that I know of, and many of his peers and most of the staff are strongly opposed to that kind of behavior, so I’m confident that what I know is accurate.  But kids can be brutal.  Sometimes they do so intentionally.  Other times they’re cruel without even meaning to be.  And Willy is a very sensitive young man.  So, I worry.

But then I think back to a school picnic a few years ago.  There was this obviously cool kid.  You know, the kind that seems to slide through social situations and the various classroom cliques with ease, fitting in everywhere, idolized by nearly everyone.  He was friendly with Willy, but also protective in a way that was patronizing.  It was as if Willy were the little kid they all let tag along with them.  They all kind of watched out for him, including him in a way that set him apart.  Now, granted, this is better than excluding him or bullying him or teasing him, but it’s still a far cry from real acceptance.  So, I was not pleased.

The moment this dynamic became clear was when the kids were climbing the slides.  Everyone was fine with Willy climbing the smaller slide.  When they moved on to climbing the roller slide, they even coached him on his technique, showing him the trick of how to do it.  They waited patiently when he took longer than the others.  It was nice to see how they welcomed Willy into their fun.  Then, they moved on to the bigger slide, and the cool kid said Willy shouldn’t climb with them, because it was too dangerous.  It wasn’t too dangerous for the other kids.  Just Willy.

Up until then, I’d been sitting in the background, just watching.  But here I had to intervene.  I told them that I was his mom and that he could climb the slide just as well as any of them.  That was all I said, and I was right.  I didn’t make a big deal, but I took my concern to the teachers and they got it.  Supposedly, things got better after that.

So, I got to think:  I‘m never going to be that cool person that seems to slide through social circles and cliques so easily, and neither will Willy, but I can’t help but wonder if the worries and feelings I’m struggling with now put me on par with that kid.  Am I being too protective?  Am I being unsupportive or just realistic?  Am I underestimating him?

I don’t want to do that.  At the same time, it’s important to recognize real limits.  The balance I’m trying to strike is to give Willy the opportunity to participate this year, with modifications, and then to give him opportunities to build his skills and endurance, so next year he can participate in the full Fun Heat without the worries.  Is that too much to ask?

“[School Name] Middle School is committed to supporting the health, safety and welfare of our (sic) all of our students.  This 1^st Annual Iron [Name of School Mascot] Triathlon is an event to challenge students physically to be their very best!”

Willy was psyched.  He really wanted to participate.  He’s already sold on the message that he needs to eat right and exercise, and to him this seemed like a great way to be physically fit.  I wasn’t so sure.

Now, admittedly, the school was already wise enough to create tiers of participation:

• The Fun Heat
• The Competitive Heat.

But, both include swimming, biking, and running.  That is, after all, what makes it a triathlon.

There are kids that are naturally adept at athletics and there are kids who are not.  Willy is one of the latter.  He gets that from both his father and I—a double-whammy.  Granted, he’s an improvement on both of us, because he’s far more motivated and works harder than either of us ever really did.  But the gains he sees for his efforts are less than the gains a child with natural athletic abilities would see.

For example, Willy enjoys swimming, but his skills are still very rudimentary.  Simply put, we’re still working on the not drowning thing.  He’s not ready to work on distance or endurance, let alone speed.

Biking is a different matter.  Honestly, I don’t know how skilled of a biker he is, because we have never provided our children with bicycles.  Considering the danger of wandering, providing our children with extra speed and mobility never seemed like a good idea.  He has, however, done some bike riding at school, but I’m not even sure he can balance on a two-wheeler.

Running is something Willy does.  So, there’s that.

I didn’t like it.  I was not at all comfortable with the swimming portion and I had no idea of whether he could ride a bike well enough.  I was tempted to say no and leave it at that, but I wavered because he was so enthusiastic.

I worried, too, though.  It was more than his immediate safety at stake.  Sure, he wanted to participate in the Fun Heat.  Sure, he wasn’t trying to be competitive, so when he didn’t win he wouldn’t be crushed.  But, in my mind, I kept thinking about whether participation would be setting him up for some serious, confidence-destroying teasing or worse.

I thought about it until long after the training was supposed to start, and so I figured it was a mute issue.  Then, I got a call.  The liaison for the school, the one who is the go-to person for Willy’s special education accommodations, called to let me know that Willy was still talking about it, still wanting to participate, and that the staff involved had concerns (though, they didn’t know that I shared them until she called).  Nobody wanted to come out and tell Willy he couldn’t participate, because that wasn’t the message that anyone wanted to send him.  But nobody wanted to set him up to fail, either.

To Be Continued…

Another concern is that the basement office means that when the kids are home it sounds like elephants running over my head.  Any time there’s a meltdown I hear it, unless I have headphones or earplugs on, and it breaks my concentration.  Which would be fine, except concentration is rather important in my line of work.

This alternative office would be a good solution to my problems.  But there are reasons I’m a work-at-home mom.  Mainly, it’s because my family’s needs require me to have a very flexible schedule.  This alternative office wouldn’t interfere with that.

But, it’s also, because I can usually help in ways that others can’t when my kids have a meltdown.  Moving my office would most definitely interfere with that.

On the other hand, I have a lot of difficulty “turning off” work.  This interferes with other aspects of family life.  If I actually left my house to go to work, then that might be better.

I’m undecided.  I suspect, if I do this on any lengthy basis, I’ll have to build up to it.  This will require finding alternate strategies for a variety of different roles I fill as a work-at-home mom.  I’m not sure my family’s ready for that.  I’m not sure I’m ready for that.  But I’m starting to wonder if it’s time we found out.

Please take a moment to check it out.  Pay special attention to some new pages:

• Autism
• Special Needs Parenting
• Special Education

And introducing…

• Marketing for Authors!

Of course, if you’re an editor looking for a new writer, feel free to contact me.