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  • Posted on July 27, 2012 at 8:00 AM

Memories surface like bubbles, so fragile they pop if I try to hold them. I remember holding Willy in one of those rare moments when he actually relaxed in my arms. Even then, a firm hug was a powerful thing—if only I’d understood. Alex trying to rewind his VHS cassette and saying clear as day, “Watch byes.” Ben, small as he was, overflowing Willy’s arms as he tried to hold him for the first time, propped up by pillows on all sides, and Willy leaning forward to plant a wet kiss on his baby brother’s forehead.

When things get hard and everything seems so overwhelming, it’s these moments that assure me that we’ve done lots of things right. We’ve made mistakes that have left scars. Others have inflicted injustices on our family that have left scars. All of these scars seared into our psyches matter, but they’re nothing compared to these memories—past, present, and future.

We are a family and we will hold.

Interruptions and Unexpected Changes

  • Posted on May 14, 2012 at 8:00 AM

I’m not very good at developing predictable, reliable schedules for myself.  Too much of my life (and my sleep) is influx to make that a practical solution for me.  That, in itself, isn’t the problem.  I mean, it causes some problems, but not the problems I want to talk about.

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)?

How to…Survive the Smearing (Morning with School Edition)

  • Posted on March 7, 2012 at 8:00 AM

I’m trying a new theme this month.  One thing I write as a professional is how-to pieces, and considering the number of times I’ve been asked “How do you do it” in reference to raising three children with autism, I thought maybe a “How to…” theme would be a better fit than a music theme.

So, as the mother of three children with autism, I have to admit one of the hardest things to cope with, for me, was the smearing of feces.  It has been, by far, the most disgusting aspect of my children’s childhood.  To wake up in the morning, ready for the rush of getting the kids on the school bus, and to peek into one of the boys’ rooms…

The first thing that hits is the smell.  When one of the boys starts the morning off with a stinky diaper, that’s bad enough, but when the contents of that diaper is smeared across the walls, rubbed into the carpet, and worn like war paint, then the smell fills the room, hitting me as soon as I open the door with near-physical force.  My gag reflex kicks in almost immediately.  If I’m not careful, I’ll throw up.

It’s important to set priorities.  Cleaning the mess is a huge task, especially if you have a bus to catch.  The advantage of that bus, of course, is that you get the kids out of the way—which makes cleaning easier, at least once you get to it. 

So, the first step is to remove the “war paint.”  I accomplish this with a quick, but thorough bath.  It’s not the fun, lingering bath the boys love.  It starts with a rough scrub.  Fill the tub with only enough water (hot, but not too hot) to cover the child’s hips when seated.  Scrub off all the visible poo.  While you might be tempted to use an old washcloth, be sure to use one with enough texture to make for a good scrub.  It also helps to have a nail brush, because the poo gets under those (frequently long) nails and doesn’t come out in a soak, let alone a quick scrub down.  Scented soap—like lavender nighttime babywash—also helps cover any lingering odor.

Then, once all the visible poo is gone, let the water out, but keep the child in the tub.  Rinse both child and tub thoroughly.  Then, fill the tub again, this time with the usual amount of water you use and a daytime soap (you don’t want them to be drowsy).  Use a new washcloth.  Wash thoroughly.  Hair, face, arms, back, hands, everywhere.  Rinse and let the tub drain.  Then, since you’re short on time (at least, you will be if morning baths aren’t your usual routine), get the child dried and dressed yourself.  This is not the time to work on self-care skills.  If at all possible, keep everyone—including yourself—out of the offending area.  I set out the morning’s clothes the night before, outside the bedrooms, so this is pretty easy for me.

Next, finish the morning routine, making sure all kids get to their buses on time (or, if you have to drive them, that you make it to the schools in time).  This is rough on everybody, because the normal routine is shot, but there’s not a lot you can do to help that.  Try not to make it too different, because such breaks in routine can be traumatic and that will make your job harder.

Once the kids are out of the house, go back up the room.  Wear cleaning gloves if you have them.  Use disposable cleaning supplies (wipes, paper towels, ect.) whenever possible.  Have designated poo supplies for those tasks that require less disposable cleaning tools (brushes, buckets, ect.).  I also recommend using one kind of disinfecting cleaner for poo (and possibly vomit) and one for everything else.  If you or anyone in your household is sensitive to smells, then that smell, even though it’s a clean smell, is going to be associated with poo smearing in, and you don’t want to associate regular cleaning tasks with poo smearing if it can be avoided.  I used liquid Lysol and to this day (years after the last major smearing incident, which, by the way, means they just might grow out of it!) I can’t smell liquid Lysol without gagging.

Start with the carpets or floors first, because you have to walk on them to reach everything else and you don’t want to step in it.  Start with the spot closest to the door.  Work your way into the room.  Be careful not to kneel (if possible) in a spot you’ve cleaned.  Check the whole floor.  Don’t rely on what you notice first.  Check the floor thoroughly, every spot, even under beds and other places that are easier for your child to reach than they are for you.  Then, move on to the surfaces.  Scrub the cloth surfaces (anything that can’t go into the washing machine) first.  Then move on to hard surfaces.  Check all surfaces.  Then, move on to walls, doors, and don’t forget the doorknobs.

I recommend piling the soiled laundry in the tub until you’re ready to deal with it, but unless you know you have two loads, don’t start washing laundry until you’re done cleaning other things—you’ll want those rags in there, too.

Once you’re sure you’ve cleaned everything in the primary room, and gotten the soiled laundry out, check the surrounding areas.  Search for poo, especially in the bathroom.  When you’re sure you’ve gotten it all, wash the soiled stuff in the washing machine.  Use bleach or OxyClean, but not both (they don’t mix well).  Put it through a full wash—all the soiled stuff together, even if you wouldn’t usually wash them together.  Then, take them out of the washer, check for stains, smell for lingering odors, use Febreeze on those items that still smell and use stain remover on anything stained, and then sort them with whatever other laundry you have.  Wash them again.  Don’t forget to go back and clean the bathtub, too.

By now, the room should be a bit drier from the cleaning.  Use paper towels to soak up lingering dampness.  Then use Febreeze on the whole room.  Every cloth surface that can be sprayed with Febreeze should be sprayed with Febreeze.  Wait for that to dry, and then vacuum.

If you have to throw up, go ahead and throw up.  If you have to cry, go ahead and cry.  In fact, I recommend crying, because crying acts like a release valve, letting off the “steam” of frustration, tension, anger, and other negative emotions that would otherwise get pent up and build until they explode.

Once everything’s clean, take a shower.  Scrub yourself thoroughly.  No matter how careful you were not to get any of it on you, you’ll still feel dirty—at least, I always do.  After you take a shower, since now your bathtub is clean, feel free to take a nice, soaking bath.  That, too, can help heal the trauma of having to clean up after smearing.

Maybe even treat yourself to something nice.  I recommend a non-food treat, like maybe an episode of your favorite television show (if you don’t have DVDs, try Hulu or the website of the station that airs the show) or movie.  Yes, I know, you don’t have time—you’re schedule is already way off track—but, really, make the time.  Surviving a smearing is more than just cleaning the mess.  You need to cope with the trauma, too; and it is traumatic, it is disgusting, it is frustrating.  Give yourself time to recover, and then let it go.

Imminent Burn-Out? (Part 2—Rachel’s Experience)

  • Posted on November 16, 2011 at 12:00 PM

So, I knew I was adjacent to the autism spectrum and I thought I knew what that meant. Then, I read Rachel's book The Uncharted Path.

As the full title, The Uncharted Path: My Journey with Late-Diagnosed Autism, implies, Rachel was not diagnosed as a child. Rachel lived for 50 years with no explanation for the ways she experienced life. Essentially, Rachel passed, or strived to pass, as neurotypical—for 50 years. She coped, she lived a successful life, she had relationships, she had a child, and she had a career—for 50 years.

Then, she started researching autism in regards to her father, and that sense of similitude that maybe it applied to her as well crept in. This search for answers culminated with an official diagnosis:

After a half-century of feeling invisible, unworthy, and utterly strange, I wanted someone else to see me, to hear me, to understand me, to take me seriously, and to not send me away until I got a label that made sense. (UP, page xiv)

Sure, she struggled. Sure, it was work. But she coped. Self-doubts (I am oh-so familiar with those) aside, she coped for fifty years!

I used to be able to do so much. I could get up in the wee hours of the morning, drive long distances, go grocery shopping, work full-time at a demanding job, teach my daughter, support my family, pay the bills, cook the meals, clean the house, plan birthday parties, include all the neighborhood children in our holiday celebrations, exercise, and do just about anything anyone asked me to do, except stand on my head. (UP, page 98)

And then, she burned-out. She stopped coping. She lost functioning.

Those times are over. I’m sad that they’re over, and I’m also very relieved. I’m finally learning that I am not an infinitely renewable resource. Walking through the world and taking care of myself is a lot of work. I have to use my energy wisely. As I experience the effects of a lifetime spent defying the way I was made, taking care of myself is the most vitally important work I can do. (UP, page 99)

Rachel describes the differences between what she used to do and what she could do as she wrote her book in vivid detail. I felt a familiar similitude to her experiences growing up and becoming an adult—working hard to be a success, but always being a bit different, standing out in a way that’s not conducive to social success. I felt a similitude to that woman who pushed herself so hard and did so much for others—career, family, friends. I understand, because I do it. I’m living that life right now. And I get tired. I run out of spoons.

And that’s where the fear comes in. Rachel’s words, “not an infinitely renewable resource,” were something of a blow—a terrible, fear-filled blow to my sense of reality.

What if we have a lifetime allotment of spoons? How many have I burned through? How many do I have left? Am I going to crash and burn?

Imminent Burn-Out? (Part 1—Where I Stood)

  • Posted on November 14, 2011 at 11:29 PM

I recently finished Rachel Cohen-Rottenberg’s books, The Uncharted Path and Blazing My Trail. I’ll do a full review of each book, I promise, but those will have to wait. Right now I must address one urgent issue particular to those adults who either are on the autism spectrum or those who, like me, are close to being autistic, but don’t quite meet the diagnostic requirements.

As I’ve said before, and will again, I have many of the traits attributed to autism, including sensory processing difficulties, language processing peculiarities (a marked difference between speech skills and writing skills), and social processing difficulties. Were it not for the facts that autism (as it is defined by society) is a disability and that many people with legitimate diagnoses of autism struggle much, much more than I do (including all three of my children) and that I feel expressing my experiences as being equivalent to their experiences would detract from their struggles…were it not for these things I would feel wholly comfortable calling myself autistic.

Before I discovered autism in order to understand my children, I had never really understood what set me apart from my peers. I never understood myself. I’ve never felt I belonged in a community better than I belong with autistic adults. While I’ve always (as far as I can recall) understood that people have different gifts and different abilities, before I discovered autism I’d always more or less assumed people experienced the world in more or less the same way. I just wasn’t very good at coping with it.

Compared to the ideal neurotypical, I’m still not good at coping with it. Compared to the struggling autist, I am quite good at coping with it. And, that’s the thing. As far as I understand current diagnostic standards, I don’t qualify for a diagnosis of autism because I cope too well. I’m not disabled. Sure, coping is hard work. Sure, there are some days when I just don’t want to cope with the outside world. There are days when I dread answering the telephone, and would much rather the person trying to contact me via a letter or an e-mail. Sure, I freeze in social situations most people take for granted. But, when it comes to traversing my day-to-day life, and getting by in the world at large, I can cope more or less successfully.

(This is not some sort of gloating self-congratulatory baloney. There is absolutely nothing wrong with being disabled—except for the lack of acceptance, accommodation, and appreciation from the world at large, but that’s a problem with the world, not a problem with being disabled.)

The point is that I cannot, in good conscience, consider myself disabled. I struggle, but I can cope without the kinds of accommodations others need to cope. Sure, those same accommodations would make coping much less work for me. But I can do it on my own, with my own self-provided coping mechanisms and accommodations. There are many people who can’t and they deserve the focus of the autism community much more than I do.

I’ve struggled to communicate this position of being between to my readers, my family, my friends, and anyone else who has a need to know or who just might be interested. I was confident that I’d gotten it down (though there are still those who want to call me autistic and those who are offended when I consider myself close-but-not-quite).

But, perhaps it was time for my understanding to change.