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Stupid and Useless

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

Those are loaded words when you’re part of a community of people with disabilities. Far too many people have been derided as stupid and useless for far too long. Yet those words struck a chord with me.

“Stupid useless pain is much harder to bare than pain with purpose.” –Dr. David Schnarch

I read these words in a book about marital relations. Of course, the book in question addresses far more serious situations than I am concerned with, but I’m finding the basic tools are applicable. More to the point, the pain I thought of when I read these words did not involve (at least, not directly) my husband Mark.

I’m not prone to hyperbole, so believe me when I say the last two months have been hell for me. I’ve had meds messing with my mind. I’ve had so many troubles and complications that I’ve given up hope, gotten it back, given it up, and gotten it back more times than I can count. I’ve been sick for over a month and got so used to feeling weak and dulled that I didn’t realize how far I’d slipped until I started to climb back up to my strength. I’ve been angry at God. I’ve coughed until my lungs hurt and then coughed some more. And, no matter how much I try to get back on track, I keep slipping back into a cycle of decline-and-recovery. I’m still not even with myself.

Most of this time, I’ve felt like everything I’ve been going through was stupid and useless. It’s been painful—physically, mentally, emotionally, and spiritually painful—and it was useless and stupid and ENOUGH IS ENOUGH ALREADY!!!

Like most human beings, I seek relief when I’m in pain; yet, I’ve gone through some incredibly painful experiences and I’ve bore them much better because I’ve understood their purpose. I’ve born these last two months quite poorly. I’ve done things I despise, like yelling at my child for being uncooperative because I just couldn’t handle one more thing. I haven’t done things that I should, like finishing all the work I promised to my clients months ago.

As an adult, when Mark moved to a new place, he’d walk around until he got thoroughly lost in order to learn more about the place he chose to live. On the other hand, we took a trip as a family and I ended up missing an important turn. Instead of going down I-35, we were going down I-90. We got so lost and mixed up trying to cut across between the two that Mark literally used the sky to navigate for me. I hate being lost. Mark takes it in stride and he finds the way forward.

These last two months I’ve been lost and I hated every moment of being lost. I hated being weak. I hated being tired. I hated being in pain. I hated my complete inability to turn things around. I was fighting so hard against the things I hated and I wasn’t getting anywhere. It was stupid useless pain and it was eating me alive.

Then, I stopped fighting. This time it wasn’t a matter of giving up; it was more a matter of looking around and looking up. Two things occurred to me. First, I knew that I had finally completed my memoir and that, whatever happens, it will be published. Second, I saw that in trying to start from scratch I’d begun writing again.

Granted, my business is a writing business. I’m always writing something. But everything I’d been writing since I obtained my graduate degree in writing was written with a specific purpose in mind. Whether it’s for a client or for myself, it’s all been driven by a purpose, by an objective, by a goal. Everything I’ve written has been practical.

I am not, naturally, a practical person. I’m a dreamer. In living my dreams, I’ve pursued practical purposes that, together, are supposed to realize my dreams. But practicality doesn’t come naturally to me. Dreaming does. So, when it came time to replenish my creative well, I started writing the passionate ideas that came to me—without a predefined purpose. And it was liberating.

Now, practically speaking, I’d stopped writing in order to better use my time in my writing business. I suspect that there was no other way to get me writing again than to knock me so thoroughly down that I had to go back to my roots as a writer just to stand myself back up. You see, decades ago when I started writing, it wasn’t with purpose—just passion. I loved to write. Writing excited me. It thrilled me. Cultivating my talent and turning it into a business was something I was proud of, something I loved.

Then, once I’d actually got my business up and running, there came the pressure and the consequences of that pressure and the consequences of those consequences. I became driven. I was still inspired and I was still passionate, but I wasn’t using that passion or that inspiration, not to its fullest. I was working towards a purpose. Everything else fell to the wayside, including the love I had for what I was doing.

So, while I’m still recovering, I’m recovering with a purpose. I’m recovering my faith. I’m recovering my inspiration. I’m recovering my work ethic. And, yes, I’m recovering my health, too. My life is imbalanced, but I’m getting better now that I have a purpose I can really live with, despite the pain. And I’m about one-fourth of the way through the first draft of a novel that I’ve been trying not to write for at least six months. Now, that was stupid and useless, wasted effort. And I realized it by realizing, once again, that pain is necessary for growth and renewal.

My Confession: I Have a Disability

  • Posted on October 29, 2014 at 9:56 AM

If you haven’t guessed by my blatant lack of posting, I’ve been having a hard time of it lately. I’ve been feeling like Job; except, I have conscience enough to feel guilty for feeling like Job, because I know Job had it way worse than I have got it. After all, Job’s miseries started with the loss of all of his children in a “freak” accident. Thankfully, all my children are alive and well.

It all started with a good thing. I decided to try Chantix to help me quit smoking once and for all. It worked for my uncle. It was working for my mom. I was ready to bite the proverbial bullet and have a go. I was warned that it might make me “a little more tired” and that it may cause some “vivid dreams.” These warnings did not prepare me for what was to come.

While on Chantix, I slept 18 to 20 hours a day. The worst part, though, was that I wasn’t even aware of how much I was sleeping because I had very vivid dreams that I was living my life, including turning in the assignments I’d promised to my clients.

This went on for two weeks before I accidentally missed a dose and I started to realize that things weren’t making much sense. I became suspicious—paranoid, really—and I decided to intentionally miss a dose. I was sick with headaches, nausea, and a pervasive dullness that made me want to crawl right back into bed, but I was also aware, with a growing sense of dread, that there was a distortion in my sense of reality.

So, right before my mom’s hip replacement surgery, I stopped taking Chantix altogether. I spent the day at the hospital, which is its own kind of misery. We had a bit of a scare (regarding the delay in my mom’s “recovery” period). Yet, I was able to stay awake and alert and conscious of my surrounding throughout the day. I committed myself to ‘ssessing out what’s what.

The next day, Tuesday, went by pretty quickly, as I needed to be there for both my mother and my children. But that evening I hunkered down to try to figure out what had really happened and what hadn’t. I had over 800 e-mail messages in my in-box. That freaked me out. I shut down my e-mail and went to my assignment folders. I couldn’t find any of the work that I remembered doing. I went back to my e-mail, sent off a frantic message to my co-author, and called it a night. Honestly, I just wasn’t up to facing the dreadful truth. I was hoping to wake up to discover that this was just a nightmare and everything was really just fine and dandy.

Wednesday morning my co-author and I had a Skype meeting and he gave me the nitty gritty from his end of things. I’d been gone for two weeks. He couldn’t get in touch with me via any of my known methods of contact. He’d honestly feared that I, and possibly my entire family, had died.

By then my e-mail in-box had over 900 messages (mostly spam). I tried to sort out the spam from the legitimate messages, got through about 400 messages (just sorting them), and sent off heartfelt, honest apologies to my clients. I then went upstairs, told my husband how thoroughly I’d messed up, and cried on his shoulder for a good 15 minutes before I was ready to face the music. I went back downstairs and started reading the messages I’d missed.

Despite the mess my business was in, life went on around me and there were many needs I had to meet. My mom was in the hospital until Friday; then, she was moved into a nursing home. The boys needed me, my mom needed me, and my clients were all very understanding. I struggled to get everything back under control, but my confidence was shattered. I’d messed up so thoroughly and, even though it wasn’t exactly my fault, it was definitely my failure. I felt it keenly.

Day after day I tried to manage everything I needed to do and everything I hadn’t done—and I failed. Day after day, I tried and I failed. Again. Again. Again. Again.

The stress exploded exponentially and I succumbed to a fibromyalgia flare up that floored me completely. Before the Chantix I’d gotten my daily, regular pain down to a 3 out of 10 (10 being bad). Now, I was at a 7 out of 10. (For context, my broken wrist, delivering my children, and my bouts with my gall bladder usually rang in at around an 8 out of 10.) My ability to concentrate was at a 2 out of 10 (10 being good). I just could not do my work. At all. I could barely meet the needs of my children and my mother. I could barely function. I felt even more like a failure.

Last Wednesday was my day. I woke up, got the boys off to school, and decided I could afford to take a nap. I overslept. Scrambled to get ready. Arrived late for the IEP I was going to duck out of early. Contributed nothing and left anyway. I scrambled to finish getting ready at my mom’s, but we just got later and later. We were supposed to leave by 2:30 PM. It was well after 3 PM when we actually left. I tried to make up the time as best as I could, because we were driving down to Chicago. This was going to be my night. This would turn everything around.

I was doing fairly well—just a bit late—when we ran into a major slowdown that suddenly became a parking lot. We waited for over a half an hour before things got moving and by then I was definitely late for my night. It was pass time for things to start when we got off the interstate, but I was determined to make an appearance anyway. This was my night!

I was going to my alma mater, except I drove right passed it because the building had been completely refaced and was now unrecognizable. I backtracked. My mom decided we could park; I didn’t need to take the extra time to try to drop her off in front of a building we couldn’t find. So, we parked in the underground parking area, right near an elevator which would take us up to the street. I unloaded her walker and we were off, albeit slowly.

I managed to find my school, about a block and half away, and we made it into the building and to the room where the event was taking place—just as people were leaving. I wormed my way forward to present myself to my former advisor. She got out the mic and got people’s attention. She introduced the award that was being given and then she introduced me, the recipient. I read an excerpt from the piece that had won me an award for overcoming adversity. I was able to read it without any anxiety, because, honestly, how much worse could it get? I watched the audience respond to my piece with gratification. Then, when I was done, the audience applauded. This was my moment. This was the moment when everything would magically turn around for me.

Except it didn’t. It started with the walk back to the car. We walked back much more slowly, for my mom’s sake. And it was during that long, slow, excruciating walk that I realized that the cramps I’d gotten from the long drive would not be worked out of my legs before I had to get back into the car and do it all over again. Once we were back on the interstate, we still had to swerve through endless miles of non-existent road construction, where miles and miles of the road were “under construction,” but there were only two areas (with many miles between them) where workers were actually working. As bad as that was, the worst was yet to come.

The “highlight” of the evening was our stop at the Road Ranger. Mom didn’t like to pay at the pump, so we went in to pre-pay. My legs were still cramped and my mom still had her walker, so the walk to the store was slow going. Mom pre-paid for the pump. We went to the rest room. We got some drinks and hot dogs. Then, we made the slow, painful way back to the pump. But the pump wouldn’t work. I walked back to the store and the clerk explained that our transaction had been canceled, because we took too long. I walked back and my mom elected to use her credit card to pay at the pump instead, because I really, really didn’t have to walk back to the store. So, I swiped the card through, made the appropriate selections, and set up the pump. The gas didn’t come. I waited and waited, but the gas didn’t come. So, I let go of the handle, turned back to the pump, and tried to see what was wrong now. Then, the gas started to flow and it started with so much force that the pump popped out of the gas tank. I turned just in time to be sprayed from head to toe with gasoline—mostly in my face and all over my skirt.

I stomped back to the store and reported the incident to the clerk. She just blinked at me. I stomped into the rest room, cleaned myself up as best I could, but I still reeked of gasoline. I stomped back to the car and did the only I could. I popped the trunk, threw my coat and my skirt into the trunk, slammed it shut, and put on the trench coat I’d lent to my mom. The shirt I was wearing was a tunic, long enough that some people—but definitely not me!—might wear it as a dress, so this wasn’t quite as “revealing” as it might sound.

Finally, I got into the car and was prepared to drive away and never, ever come to a Road Ranger again. But my mom said she wanted her receipt. So, I drove her up to the store and got out her walker and let her go in by herself. She came out a little while later, saying that not only did the clerk say that I must have “done it wrong,” as if I hadn’t been pumping gas without incident since I was fifteen, but also claiming that she’d already given me the receipt. My mom told me to come in with her so she could get her receipt.

“Mom, I’m not wearing any pants!”

And that was that. We drove away. When I’d finally gotten us into my mom’s garage it hurt to get out of the car, because my sweaty skin had stuck like glue to my mom’s leather seat. I limped to the other side, helped my mom get out and up into her house. Then, I changed back into the clothes I’d worn for the IEP and I went home.

The days that followed didn’t get better, because the sinus infection I had had become full-blown bronchitis, and got progressively worse. My productivity went from being negligible to be nothing at all. And I was angry. I was angrier than I had been in a long time. As a person of faith, I’d been praying this whole time for some help—divine intervention. The Bible tells us that God answers such prayers. My prayers were being answered with silence and I was angry. I’d had enough. I couldn’t take it anymore and I couldn’t do it anymore and I was done. I was DONE. I QUIT. And if God wanted to change that He’d have to do something big.

But we develop routines for a reason—at least, the ones we develop on purpose—so, the next morning I did my prayer journaling, grudgingly, then I did my independent studies. And, while my anger and resentment didn’t evaporate, I realized something. There was that nagging voice saying, “Of course you couldn’t take it, of course you couldn’t do it, of course you should quit...” And I finally stopped long enough to examine why.

I am a person with a disability. And as long as I’ve lived I’ve heard that people with disabilities can’t… It doesn’t matter what it is, there’s always somebody saying that a person with a disability can’t do it, or can’t do it well, or can’t do it enough, and shouldn’t try to do it at all. And for as long as I’ve been aware of the disability rights movement I’ve been fighting this kind of stereotyping. I’ve been fighting the oppression that says that a disability—any kind of disability—dictates what we can and cannot do. Each of us has things that we can do, things that we can’t do, and things that we cannot do very well but might enjoy doing anyway. Disability doesn’t change that. I know this. I believe this! I fight for the world to see this!

But it doesn’t save me from that subtle and not-so-subtle voice I’ve heard all my life.

So, here is my confession: I am a person with a disability and I gave up—just for a day—for no better reason than that I believed that, because I am a person with a disability, I couldn’t do it. But I won’t live my life like that—that’s really something I just can’t do.

Parent Tip: Immerse Yourself in Autism

  • Posted on July 26, 2013 at 10:00 AM

Cultural immersion is the idea that idea that you learn about another culture more quickly and more thoroughly if you immerse yourself in that culture. Student who study abroad through an immersion program will travel to another country and live in that country—speaking the language, learning the culture, adapting to the country’s way of life—to improve their understanding of that country and that language, but also to broaden their understanding of global affairs. Cultural immersion programs are touted as a great source of learning.

Compare that to typical American tourism. As Americans, we go into another country, expecting them to speak English we can understand. We visit the sights, but see them only from our own perspectives. We wear our American clothes, carrying around our American baggage, and cop our American attitudes. We often come off as rude, insensitive, and ignorant.

An orientation meeting happens when you start a new job with a new company. If you are one of many new hires, there’s an actual orientation meeting. If you are a single hire, this often comes in the form of a personal tour and a stop at human resources. Either way, your new employer orients you to the culture of the organization you’ve just joined. Some of that orientation will be more about what the organization intends to be, rather than what it is, but even there you’re learning about the organization’s culture.

Compare this to times where you may have started a new job and been plopped down to work without much of an introduction. Disorienting, wasn’t it?

On the surface of things, parenting a child with autism is like being forced into an immersion program. For most people, this may be their first introduction to the disability community. They have to navigate the worlds of special education and special needs medical care with no training and no orientation. They have to figure it out for themselves or find people who can help. All the while, you also have to learn about your child’s disability and ways to help your child.

That sounds a lot like immersion, and I suspect we’ve all been there to one degree or another. After all, we’re being forced—against our will—into the world of disabilities, with all the systems and trappings that go with that.

A lot of parents seem to stop with that level of immersion. They stay in the adult world where all their energies and resources revolve around dealing with their child’s autism—dealing with their child.

It’s like American tourism or the disorienting non-orientation. It’s overwhelming, it’s intense, but it doesn’t help you to understand your child.

In order to immerse yourself in autism, you have to make a shift in your mind. Do you really want to deal with your child? Or do you want to understand your child? If you really want to understand your child, you have to immerse yourself in your child’s world—not the world of disabilities—and connect with your child as a fellow human being. The problem, of course, is that people with autism seem—and truly can be—disconnected from their fellow human beings.

It’s more than just a different culture; it’s a different way of experiencing the world and the people within the world.

It’s true that you still have to immerse yourself in the world of disabilities, because those are the systems our society creates to deal with people with disabilities. But your child is more than just a problem to be dealt with. He or she is a human being you love and care about and want to have a relationship with. In order to do that, you need to connect with him or her. Don’t be an American tourist, expecting your child to bridge the neurological gap. After all, if your child could do that, then he or she wouldn’t be diagnosed with a neurological disability. Immerse yourself in your child’s world. Speak your child’s language, experience your child’s world, experience your child’s way of being. Let that experience broaden your understanding and bridge the gap between yourself and your child.

Autism doesn’t have to be your enemy. Your child certainly should not be your enemy. It’s within your power to attain understanding. Take a step into your child’s world and experience it for yourself.

Poverty Among Friends

  • Posted on July 22, 2013 at 10:00 AM

Lately, I’ve been looking for commonalities. Often, in discussing the issues of autism, Asperger’s, and other disabilities among cohorts, one of the complaints frequently aired is the apathy of people outside of these cohorts. It seems people without direct, familiar contact with a person with a disability are not likely to be interested in discussing disabilities, especially not a particular disability.

I don’t presume to know how these cohorts broach the subject, but lately I have tried to discuss the issues of interest to me with a variety of people of different backgrounds, interests, and stations. One of the ways I found to successfully broach the subjects I am interested in is by easing into the conversation through a subject of mutual interest. (More on this project in the next post.)

Despite the optimistic reports, we live in an economy that is still reeling—at least at the individual level—from the aftermath of our recession. It’s true that painful examples of poverty have always been among us. But now that pain is more common as people who are used to being able to find good-paying jobs no longer can. I can think of at least a dozen people who are experiencing that pain through direct, in-person connections. That number goes up exponentially when I add various sources of internet connections.

People are feeling the pain of poverty. People who did not grow up in poverty are experiencing it for the first time as adults. People are feeling the pain of job loss and the inability to find a suitable replacement job.

This is a feeling that is more common among people with disabilities than the average population. This is a connecting point that makes a natural bridge for conversation.

A lot of people know someone or have been someone or are someone who has lost a good-paying job in favor of either nothing or something that pays significantly less than they’re used to. This issue means something to them. When you then turn that issue just a little bit and express the chronic state of employment in relationship to disability, then you open eyes, you open minds, and you open hearts.

I know the pain of poverty. I know what it is to aspire to sufficiency, and have it seem out of reach. I know what it is to aspire to prosperity, and have it seem a lost dream. I know the power of compassion, empathy, and understanding. If we understand and empathize with the experiences of others, then we can express our own experiences in a way that bridges the gulfs between us. In the process, we discover those gulfs were merely a step away.

Generalizing Acceptance

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

Willy came out of nowhere and said, “I feel bad about Stephen Hawking. He can’t walk or even move his mouth.”

Wow, where did this come from!?! I sat Willy down and asked why he felt bad for Stephen Hawking.

“Well, Stephen Hawking is very smart, but he can’t move. I wish there was a way for me to help him. But he’s already dead.”

(Later, in trying to confirm that statement, I discovered that Stephen Hawking was the victim of a death hoax. So, he’s not dead, but there’s still nothing Willy can do to help him.)

I said, “So, you pity Stephen Hawking because he’s disabled, is that right?”

“Yeah, I guess so.”

For the last few years, Willy and I have been talking about disability. In particular, we’ve talked about how Willy is disabled, but that being disabled doesn’t mean what many people think it means. He understands this as far as this idea applies to him, but this is the first time I’ve faced clear evidence that he has not yet learned to generalize the idea to others.

So, I said, “Willy, do you want people to feel bad for you because you’ve got your brain instead of someone else’s?”

“Well, no.”

“But you feel bad because Stephen Hawking can’t move.”


“Do you feel bad because Alex can’t talk?”

“Yeah, I do, because that’s hard.”

“So, you don’t want people who are more ‘abled’ than you are to feel bad for you, but you feel bad for those who are more ‘disabled’ than you are?”

Willy said, “yeah” again, but his voice dropped slightly in pitch. If he was familiar with the phrase, he might have said, “Well, when you put it that way…” Instead, he sat there thinking silently to himself.

“Do you see what I’m getting at?”

Willy shook his head. “Not yet.”

“Maybe instead of feeling bad that Stephen Hawking can’t move and that Alex can’t talk, you should be glad for what they can do. Even though Stephen Hawking can’t move, he’s really, really smart—”

“Yeah,” Willy said, “he’s almost as smart as me!”

I laughed, “Well, actually buddy, he’s probably a lot smarter than you. He’s certainly smarter than me. He’s smarter than Daddy. He’s smarter than anyone I know. So, he’s probably smarter than you, too, because he’s really, really smart. And so, even though Stephen Hawking can’t move, he can think really, really good, better than lots and lots of people. So, instead of feeling bad that Stephen Hawking can’t move, maybe you should feel glad that Stephen Hawking can think so well. And maybe instead of feeling bad that Alex can’t talk, maybe you should feel glad that Alex is so funny, because Alex is really funny, isn’t he?”

Willy thought about this and nodded, “Yeah, you’re right. Alex is funny and Stephen Hawking is smart.”

“So, instead of thinking about what people can’t do, we can think about what people can do. Instead of feeling bad for what they can’t do, we can value them for what they can do. Make sense?”

“Yeah,” Willy said, “I like that. That works.”

As Willy got up to walk away, I couldn’t help but add, “Besides, if I were to feel bad for Stephen Hawking about anything, I’d feel bad that he doesn’t know God.”

Willy’s mouth dropped open. “He doesn’t!?!”

I shrugged, “Nope.”

And then, just to add a twist, Willy said, “L-O-L.”

I bit my tongue to keep from launching into another futile lecture about the usage of “lol” and what it really means. For the life of me, I can’t convince Willy that it is NOT the equivalent of “wow.”

Spoons, Marbles, and Other Finite Resources

  • Posted on November 30, 2012 at 9:00 AM

I was first introduced to the spoons metaphor in 2010, so when the family member who “diagnosed” me with fibromyalgia (it’s not official, because she can’t do the treatment plan) started talking about the implications and used a metaphor involving a jar of marbles, I knew exactly what she was talking about.

For those who don’t know and don’t want to follow the links, here’s a brief description: Everyone has a finite amount of resources with which to get things done in a given day. For most people without disabilities, the primary finite resource is time—we don’t have enough time to do everything we want to do. For many people with disabilities, the primary finite resource is energy, partly because we may have less energy than the average person and partly because the things we need to do require more energy of us than they require of the average person. This energy can be seen as a form of currency—the original example was spoons, but marbles or anything works just as well. If you don’t manage your spoons, you run out of energy before you run out of time. A person with fibromyalgia may have fewer spoons to spend due to their fatigue. A person with fibromyalgia may also have to spend more spoons to get a given task completed than the average person. So, in short, a person with fibromyalgia can get less done.

Even without bring up the marbles/spoons analogy, I knew that with fibromyalgia I would need to come to terms with productivities levels that were less than what I used to be able to do. The last few months bear that out.

Along with finding that first spoons post, I also unearthed some others.

The first one that caught my eye was the third in a three-part series of posts in which I acknowledged back in 2010 that I was noticing a decline in my abilities:

My energy (and yours) is always limited, and some days it’s more limited than others. My energy also varies during different times in the day.

Along with limited energy, two other finite resources affect my ability to accomplish tasks. One is my ability to concentrate. Unfortunately for me, sometimes having energy doesn’t mean I’m able to concentrate. Sometimes being able to concentrate doesn’t mean I have energy. The most mentally challenging tasks have to be completed in those periods of time where having energy and being able to concentrate intersect. The other finite resource is time. This is significant, because there are tasks that are time sensitive and those that are not.

The second one involved another series of posts called “Imminent Burn-Out?” in which I committed to taking better care of myself…and then I got too busy to worry about it.

So, I feel like I’ve come full-circle. It’s time to take a good hard look at my spoons and to figure out how much/little I can do with them.

Success Can Be Its Own Adversity

  • Posted on June 11, 2012 at 8:00 AM

One of the common threads in discussing autism, Asperger’s and associated neurological differences is the challenge of discrimination and the lack of opportunity.  One of the threads that seems less common, if not entirely ignored, is the adversity of success.

With success brings the expectation—often overwhelming—to perform successfully.  This is emboldening when that performance is accessible, but it can be extremely disheartening when that success is out of reach.  As many of us know, ability is variable.  Some days we can do more than we can on most days.  Some days we can do less that we can on most days.  What we can do any given day, even a normal day, isn’t the same from day to day.  Add the stress to perform and that variability can increase exponentially.  Now this is, to a degree, true for everyone.  With autism, this variance is heightened and enunciated in a way that seems dramatic, even odd.  It makes the normal level of unpredictability seem predictable in comparison.

What makes this especially unfortunate is the days that we must perform are not always the days that we can perform.  I see this in my children and in myself.  These are the days when our successes come back to bite us.  We are expected to do, so we try, but we can’t and the frustration mounts, making it even harder to do and even harder to explain why we can’t, because everyone already knows we can or, rather, that we could without seeing the difference between the two.

How do you deal with success?  How do your children deal with success?  Do you give yourself or your children permission not to succeed even when you know, on another day, at another time you or your children could do what they can’t do at the moment?  It’s hard to do so, but it’s necessary.  Some days we can.  Some days we can’t.  Even when we usually can, there are still some days when we simply can’t, try as we might, as much as we want to, it’s just simply inevitably and unalterably out of reach.

A Matter of Perspective

  • Posted on February 13, 2012 at 8:00 AM

I’m rather partial to my mind.  I’d hate to lose it.  I’m not talking crazy; I could do crazy.  I’m talking dementia.  I would hate to lose my mind to dementia.  Second to that, I’d hate to be blind.  Perhaps being blind would be worse, because I’d know I was blind—I might not know I’d lost my mind if it happens quick enough.

I can imagine how bad it would be to be blind.  I would cope, I guess, but it would be a lesser life.  It would be an exaggeration to say words are my life, but I’m not sure how much of an exaggeration.  Certainly, words are a very big portion of my life—written words.  If I had to consume my words by ear, well, that just wouldn’t be good enough.

Now, I’ve probably pissed a lot of people off with those admissions, but I’m not done yet.  Take a deep breath.  It gets better.

From my perspective, as a person with full and free use of my sight (excluding the whole glasses thing)—as someone who has built a life revolving around the use of my sight to do my work and to enjoy my leisure activities—it would be awful to be blind.

But just because I think it would be awful to be blind doesn’t mean it is awful for someone who is blind to be blind.

I am the mother of three children with autism.  My children’s disabilities range from relatively mild—though, not as mild as it seems to me—to relatively severe.  People pity me.  From their perspective, I’ve got it hard.  Ours is a hard, hard life—tragically hard, really.  I know, because people have told me so a thousand different times in a thousand different ways.  Probably more than that, actually, since I never really counted the times or the ways; besides, I’m not good with math.  Anyway, I’ve been told that my life is awfully hard a lot.  We’ll stick with that.  So, yeah, where was I…oh, yeah, our life is hard.  Hard.  HARD.  HARD.

Except it’s not.  Not really.  At least, well, sometimes it is, but so is everyone else’s, so there.

My brother just had another accident.  He slipped.  For me, slipping—unless it involves falling down the stairs and breaking my wrist—is no big deal.  I just get up.  You see, I don’t have a chronically damaged knee.  My brother does.  So, his slip is a big deal.  He slips and he sprains his knee so bad that it keeps him home from work, except he can’t stay home from work long enough to heal.  He needs knee surgery, but he’s too young for knee surgery.  So, he has to live with it.  Chronic pain.  Chronic risk of further injury.  Now, that’s hard!

My cousin has problems with her gall bladder.  So do I.  Mine’s been spitting out stones since I was pregnant with Ben (he’s nine, btw).  But she also has chronic back pain, which is worse.  Seriously bad back problems.  And two kids, one with special needs.  Now, that’s hard!

And it is.  My brother’s life is hard.  My cousin’s life is hard.  My life is hard.  But not in the ways we’re prone to assuming when we look at each other’s lives.  We look at other people’s pain and other people’s hardships and we say things like…I could never do that.

I could never stand being blind.

But, if it happened, I would and I would keep working to raise my family and I would keep working to share my words and I’d find a way to “read” the words of others.  It would be hard.  But it’s all a matter of perspective.  We can’t fairly judge the quality of someone else’s life by how hard we imagine it to be.  That doesn’t really work.

People assume that the way to make my life less hard would be to cure autism.  People have told me this is true many, many times—though, not thousands, because I’ve learned the warning signs and I’ve learned to walk away whenever possible when those words are coming.  The point is, this assumption is all wrong.  If you ask me how to make my life less hard, then you’ll learn the answer has nothing to do with autism.  In fact, it’s very similar to the answer you’d get from a lot of Americans right now.

What would make my life less hard?  My life and the life of the family I support would be less hard if I had the financial resources to support my family better.  It’s really that simple and that common.

I don’t assume that my fears of blindness properly reflect the experiences of someone who is actually blind.  In fact, because I’ve listened to people who are blind I know that they don’t.  So, instead of assuming that your fears of autism properly reflect my experiences as the parent of three children with autism, try listening.  You don’t get to dictate the quality of our lives on your own terms.

Executive Functioning in Low-Functioning Autism

  • Posted on December 23, 2011 at 8:00 AM

Recently Gavin wrote about executive functioning.  I started with Willy, and now I’m going to explore executive functioning in low-functioning autism.

In the first post, I provided a recap of Willy’s development on the autistic spectrum.  Now, here’s Alex’s:  Unlike Willy, Alex never developed typically.  This means, in short, that Alex didn’t regress, because he never developed the social and communication skills that Willy demonstrated early on and lost.  Throughout Alex’s life, he’s been delayed.  These delays are often regarded as a combination of autism and cognitive disability, but the latter has not been proven.  It is often assumed simply because it hasn’t been disproven.  Alex’s disabilities are very visible.  His inability to speak effectively for communication, his body movements, his toe-walking, and his vocalizations and mannerisms all make sure that Alex stands out as someone who is different.

With regards to Alex, there is so much focus on other deficits that executive functioning gets short shrift.  For example, Alex has no effective means of communication.  This is a big, huge barrier, a serious disability which has far-reaching implications.  Every aspect of Alex’s development suffers because of the communication barrier.  Thus, the communication challenges get a great deal of attention.  Added to that, Alex lives in a state of near-constant dysregulation.  This, too, gets a lot of attention.  Most of the therapy and educational services Alex receives focuses on one or the other or both.  A fraction of our energy is focused on building independent living skills, like getting dressed, getting his coat and shoes on, putting things away, and completing routine chores.  To a certain degree, these skills often involve fine motor skills, which is another area of deficit.  But to a greater degree, all these skills rely on executive functioning skills.  And, lo and behold, when I stop to think about it, Alex has fewer executive functioning skills than Willy and fewer accommodations and supports to compensate for that deficit.

See, for Willy the example of “get ready for school” used in Gavin’s post describes his need to break down regular tasks to a more basic level of instruction.  I can tell Willy “It’s time to get ready for school” and then break that major activity into minor tasks like, “It’s time to wash your face and your hair, then take your shower” and “Get dressed, then come put on your shoes.”  If I were to try that sort of thing with Alex…well, just forget about that.  It’s not going to happen.

For one, Alex is still in diapers and he doesn’t change them himself.  And that’s where things get kind of…well, once I seriously start thinking about this, I’m not proud of my responses.  You see, I coach Willy through his morning routine.  I provide support to help him get himself ready.  I haven’t been doing that with Alex. I’d just do it for him.  On the surface of things, it would just take too much time and too much effort for me to coach Alex through these activities.  Then again, it’d been a long time since I’d tried, since it’s easier to just do it for him.  But that doesn’t help Alex build skills nor does it give him the opportunity to exercise the executive functioning skills he has. 

So, I tried an “experiment.”  Instead of doing everything for him, I broke the tasks down to a level Alex could do independently.  I changed his diaper, and then, instead of dressing him, I handed him his each article of clothing as independent tasks.  “Put on your socks.”  When he’d complied, “Now, put on your pants.”  Then, after he’d done that (and gotten some help with the snap and zipper), “Now, put on your shirt.”  At that level of instruction, and with some assistance on the fine-motor tasks, he was able to dress himself.

And we haven’t even gotten to Ben yet.  See, often I describe Ben as being in between Willy and Alex.  That’s mostly the focus on language and sensory management.  In those areas, Ben is between Willy and Alex.  He doesn’t talk as much as Willy, but he’s a more effective communicator than Alex.  He’s not as regulated as Willy, but he’s more regulated than Alex.  But, when it comes to executive functioning, Ben is still further behind than Alex.  I just do things for him.  And, to a great degree, that’s not likely to change any time soon, because he’s still working on things at a more basic level.  With Willy, it’s “get dressed, then put on your shoes.”  With Alex, it’s “put on your pants, then put on your shirt.”  With Ben, it’s “pull the shirt over your head, then put your arms through the sleeves.”

The take-away lessons here are:

1) Executive functioning deficits apply to low-functioning autism as well as high-functioning autism.  Thus, parents shouldn’t scoff at “executive functioning” as a real sign of disability, instead they should look at their child and consider how they can help him or her become more independent by providing accommodations and support at their child’s level regarding executive functioning tasks.  They should take a look at their child and the ways they help their child to see if they’re building skills or taking the easy way out.  They should take a moment to consider whether sensory dysregulation is the culprit for the most recent meltdown or whether it might be confusion or frustration with regards to executive functioning.  Don’t let the invisible fall to the wayside just because there are more visible disabilities; don’t assume they can’t, just because they require support and accommodations to succeed.

2) More than that, one thing I think we should all be considering more seriously is if managing deficits in executive functioning are best served by coping mechanisms and accommodation strategies, or if there is a skill-building aspect to it that we haven’t properly considered (or that I’ve never seen properly considered).

Is there another way of looking at these abilities (another context or frame they could be put into) that would translate them from the typical mindset to an autistic mindset?  For example, visual schedules are one of the accommodation strategies that are used.  Is there another level we could take that to that would translate that accommodation into an independent skill that is developed and then self-sustained?

*Please note that I will be taking a week off of blogging.  I'm going to have an at-home vacation.  My next post will be up on Jan. 2, 2012.  It's already written and scheduled, so I can't forget.*