Here’s a quick list:

• Thursday we found out that Alex would need another surgery, and it would happen soon.
• Also on Thursday, our tank ran out of oil—so we had no way to heat our home.
• On Friday, we got oil, but the furnace wouldn’t start again.
• Also on Friday, Alex was pronounced “in excellent health,” so that was a bright spot.
• Also on Friday, it was snowing heavily (Wisconsin snow storm + no heat = bad).
• So, we called a technician and got the furnace started again.
• I also got a call that Chicago was being snowed in too, so class was canceled for Saturday morning, which was much appreciated.
• Unfortunately, the furnace ran for less than 24 hours, and the technician wouldn’t stand behind his work and wouldn’t come out again.  So, by Saturday evening we once again had no heat and the house was getting cold again, and we’d wasted $75 on a bad service provider.
• So, we borrowed two space heaters and bought two more, which rose the temperature in the house back up to 60 – 65 degrees.  Nice.
• Monday, of course, was the surgery.
• In the days that followed, we devoted a lot to helping Alex stay comfortable and safe from the rough-housing of his brothers.
• Our Internet connection also went down, but only after I finished the rewrite I needed to send to a client.
• Then, the man who the article was about passed away, and not quite in the way that he’d wished.

It was a lot to deal with all at once, but I’m hopeful that things are going to ease up soon.  Our furnace is working again and our Internet access is restored, and both are good signs.  But if you’re wondering why I haven’t been as present online or why I might need some time to recuperate before I jump back into the fray—well, I hope this is explanation enough.

This particular video was made after the Oklahoma City Bombing as a dedication, but I chose Garth Brook’s “The Change” for my first Midweek Music post because I believe this song applies to all the ways we can reach out and show our love.  As an advocate, sometimes I get discouraged by how little changes, and how much there is to do.  The fact is I do want to change the world (though, I have no expectation that I’m doing so single-handedly).  But, that kind of change is difficult.  Progress can be slow.  There can be regressions and reversals.  Sometimes the best thing we can do as advocates is to be sure, whatever results from our efforts, that we continue to try, continue to love, and don’t become so jaded that the world changes us.

As long as we still try, the change will happen.

But Alex isn’t a young child.  He’s a young man, a tween.  He’s a boy learning how to become a man. Brandon and Will’s paths to manhood, though each different from the other, have been more or less typical.  They each have their atypicalities, but the paths themselves form a linear progression, with ups and downs, regressions and bursts of development, lags and rushes, but more or less straight courses moving forward.  Their gains in independence have been fairly easy to mark and recognize.  Alex’s path is very different.  In some areas, he seems to make very little progress.  In others, he’s growing and changing.  But you have to be willing to see it, to recognize it, to acknowledge it.

Certain events and experiences show our characters.  These events come in many shapes and forms, but all represent hardships of one kind or another.  According to the movie, Shadowlands, C.S. Lewis compared these experiences to the master artisan chipping away bits of stone to form the beautiful statue we are to become; it’s painful, but necessary.  Other Christian references refer to the refiner’s fire or baking clay to make pottery.  The idea is that God is crafting us, as any master craftsman crafts his creation, and we are becoming more perfect by our times in the fire.

But not everyone survives this process, let alone becomes more perfect because of it.  We all struggle, we all fall, and we all fail at times, but some of us get back up and try again, try to be better.  Some of us sell out to earthly temptations.  Others break under the strain.

The vessel that is Alex—the outer shell, the body and its limitations—is childlike in many ways.  But inside Alex is growing strong and sure.  He endures.  He seeks comfort when it is needed, and accepts it when it’s offered, but he no longer clings to me as he did when a little child in truth.  He’s growing, he’s enduring, and he’s becoming the man he will be, slowly and surely.

I don’t know how to put into words what I observed.  It wasn’t so much a matter of doing.  It was how it was done, the spirit it was done in, and the way it was done.  Once, Alex was the happiest person I knew.  Despite his limitations, he was joyful and happy and exuberant.  The spirit shined and it was a light in our house that shone brightly and with a constancy that I dearly miss.  But the limitations and frustrations, not to mention the daily trials and intrusions Ben has placed on his older brother, have worn away that shine.  Alex is struggling.  But, as he suffered his recovery from surgery that first day in my mom’s house, I saw a renewal of that spirit, a glimpse that assured me it wasn’t gone or worn away, that it would shine again it its own time, as it shone that day he bore his pain and his new, if temporary, limitations.

The next day, Alex was back to struggling and discomfort, irritated and aggravated and frustrated.  But the light is there, waiting, banked against the daily trials, looking for the chance to shine again.  The vessel may not be perfect by man’s standards, nor even normal and acceptable; the spirit may still need perfecting by God’s standards, as we all do; but the soul in that little boy, who is becoming a man, is a great soul, full of something special that has nothing to do with “needs.”  Someday, and I’m committed to this, I will help to find a way for Alex to share this with the world, for he has something to contribute, something to be “productive” about, and I will not all that contribution to be stopped by earthly, able-minded prejudices.

I’d already gotten most of the bags out to the car—one bag for Alex’s needs at the hospital, one bag for when we’d spend the afternoon and evening at my mom’s, and one bag full of what portable work I was willing to take with me to alleviate the wait.  I also had an insulated lunch bag full of canned caffeine.  I hurried upstairs to bid Mark a sleepy good-bye and to get Alex up.  I dressed him in loose clothes, and stuffed him in coat and boots.  Alex lolled with sleepiness, not having had time to wake himself thoroughly.  I left off hat and gloves, because the day was warm for winter (foggy and raining, instead of bitter cold and snowing), and because I didn’t want to have that extra bit to look after.

The drive was slower than I would have liked.  According to the weather report I’d read before crashing into bed, the fog was supposed to have lifted by now and the icy roads melted to wetness, but everything was still foggy and slick.  We got there five minutes later than we should have.  We checked in, in quick and easy fashion, and the receptionist handed a card to an elderly volunteer.  With formal courtesy, he said, “Would you follow me, please,” and led us from the front desk of the hospital, through the warren of corridors, to the outpatient surgery desk.  I made as if to step up to the desk, but he handed them a card and said, with a slight bow, “If you would follow me please.”  We ended up tucked in our little, private cubby with as little fuss and effort on our parts as possible.  Nice.  Very nice.

We were visited by a nurse’s aide, an admissions lady with a rolling, computerized terminal, and then the nurse.  The simple stuff went by with minimal fuss, though we had to coax Alex to let the light clamp thing measure the oxygen in his blood via his finger.  Of all the times I’ve seen it and had it used on me or my children, I still have no idea how that works, but, once we got Alex to leave it on, it found that Alex’s blood had plenty of oxygen.

The anesthesiologist came in before we were ready, and was left waiting a bit, but it gave me a chance to mention (thanks to my mom’s memory) that anesthesia makes Alex nauseated, so he’ll need the medicine to help with that.  Then, the surgeon popped in, dressed like a civilian, and we went over everything I hadn’t asked yet: I shouldn’t worry overly much about the bouncing, as it can’t be helped; he’ll probably need a few days off from school; and it’s all very much like the last time.  The anesthesiologist came back and we talked about the options, and I was able to assure him that, from previous experience, Alex was fairly cooperative with the medical staff, at least as far as going back with them on the rolling bed was concerned.  No separation anxiety would cause Alex to freak out as they were taking him back to the surgical room.  (Taking his blood pressure and the finger clamp were other matters.  Fight the little stuff, but cooperate with the big stuff—that’s my Alex.)

We gave him the dopey medicine, and within a few minutes Alex was ready to go.  The anesthesiologist had suggested it would take about ten minutes.  Alex waited three, then took my hand and led me out.  The bed was waiting for him, but I think Alex’s readiness took them by surprise.  With help, he clambered up into the tall bed and lay down.  He knew what was expected of him, and I guess he just wanted to get it over with.  I kept pace as the doctors wheeled him to the double doors, offering what comfort and reassurance I could.  Through the dopey haze, Alex smiled and nodded, then let his eyes droop closed.  And they were gone.

For a moment, I stood, feeling a little bereft.  Then, I went back for my purse, headed to the car for our hospital bags, and settled into the waiting room.  I tried to work on a paid assignment from a print-out.  I made a little progress, but my ability to concentrate was hindered by the other people waiting and by the rather enthusiastic, but silly talk show host and guests jabbering away on the television.  I cut about half of the material that needed cutting from my draft, but couldn’t work on the transitions, since I couldn’t hear the words in my head over the drone around me.  So, I put it away and worked on some of my novel planning, which required less concentration.

Time passed.  I was restless.  As much as my work is sedentary, it doesn’t require me to just sit and wait.  I get up and do things when my body needs it.  Here, I had to check the progress of the surgery each time I left the room.  Luckily, my timing was good, so when they came for me, I was there and seated, waiting in readiness.  I quickly put away my things and went back to the private, little cubby we’d started in.  Alex was still drowsing under the effects of the anesthesia, fluttering between sleep and wakefulness, covered in blankets, and beneath the blankets he was naked.  A patch of gauze was taped over his incision, and his hand was wrapped with self-sticky bandages to keep him from trying to rip out his IV again.

He threw up once, violently, but then was done, and seemed to feel better.  He refused to drink or eat for them, but I’d warned them that might happen.  The nurse had gone through the trouble to get Alex cheese sticks, but even these held no appeal for him.  After a while, he let me dress him.  Then, he let me put water to his lips by placing the droplet on my finger and touching to his lips.  He’d rub it into his chapped lips, but wouldn’t let me bring cup or straw near to him.

The nurse called the doctor to ask if Alex could go home without drinking, and that was approved.  A little while later, I brought the van to the front while they rolled Alex to me in an oversized wheelchair, so he could curl up in the seat.  My new, full-sized van made the trip a bit easier.  I opened the double doors wide, and then lifted Alex up and placed him into the nearest seat, reclining it a little, buckled him in, and covered him with my winter coat, which I’d left in the van.  The hazy sun had burned away the fog and the slickness, so the drive to my mom’s was quick, and aside from the chill of surgery and the overall comfort of being just on the edge of too warm, the coat/blanket was unnecessary.

Everything went smoothly.  Everyone adapted their expectations to Alex’s peculiarities, especially in regards to not assuming that his unwillingness to eat or drink was a sign of distress.  I did have a bit of difficulty getting the pain medicine from the pharmacy, though that might have been a product of my fatigue and worry.  In the end, the pain medicine turned out to be a liquid form of regular Tylenol in a kid-sized dose; so we’re using the tablets of “melt away” Tylenol that we usually use instead, because I can crush it up in his class of soda, just like I do for the melatonin, and he takes it much better that way.

I know there are many children, some with developmental delays even more severe than Alex’s, who have experienced even more health issues than he has.  Many children have to struggle through without even the opportunity to receive the kinds of therapies and supports that Alex receives.  I know this, but it’s not a comfort.  Of my three boys, Alex is the only one who has had to endure surgery.  This is lucky.  All Alex’s surgeries have been fairly minor, straightforward procedures without complications.  This too is lucky.  But, as much as I tell myself these things, I can’t help but feel like Alex got the short stick from amongst his brothers.

Now, it might seem like I’m feeling sorry for myself.  I’m not.  This isn’t about me at all.  But I do feel strongly that, somehow, I’ve let Alex down.  Everything we’ve tried—it’s not enough.  Sometimes it seems all the love we can give him isn’t enough to ease the hardships he faces.  He’s a wonderful, talented boy.  This I know.  And I worry that, as hard as it’s been, when he has to go out and fight for his right to be himself and to be recognized as someone with a positive future, that it will get harder still.  I love him, and I feel so tenderly for all that he has faced and all he has struggled through, and that I, as his mother, have failed to ease his way.

It was with this somber mood that I left the surgeon on Thursday, who confirmed that yes, the swelling in his testes was another hernia, not hormones, and who felt the urgency warranted a quick turn-over.  Alex would be in surgery on Monday morning.  I took Alex to his pediatrician on Friday, for a pre-surgery physical.

After the nurse did her thing, Alex’s pediatrician did his.  When it was all done, the doctor leaned back on his heels and nodded, a satisfied smile playing across his lips.  “Is he okay for surgery,” I asked.  “Oh yes,” the doctor said, “he’s okay for surgery.”  He looked at me, our eyes meeting briefly, and the smile grew larger.  “Alex is in excellent health,” he said, the dignified smile growing broader.  The significance of the news must have registered on my face in some way, because the doctor nodded, looked at Alex, and said, “You’re doing great, young man.  Keep it up.”

I don’t know for sure what Alex felt or how much of the exchange he understood.  I think he was just relieved that this doctor didn’t push the herniated intestine back into place.  (Which I had watched with freakish curiosity and wide eyes as the surgeon did so the day before.  Alex didn’t cry or anything, but that could not have been comfortable.)  Alex tried one more time to fit “Veggie Tales” into the little username box on the computer in the room, and then he let me help him get bundled back up.  Snow streamed by the window, hiding the street beyond, as I helped him into his snow pants and zipped his coat.  Alex focused on the snowy show.

When I got Alex back in school, I couldn’t help but share the news with his teachers—both the old teacher and the new one.  Then, as soon as I was able, I had to share the news again with my husband, in e-mails, and on social media.  It’s a hard-won victory and those words, “excellent health,” so much so that it almost makes up for Alex needing another surgery.  Almost.

But, creating autistic mice?  Really?  First, that which we call “autism” is a collection of observed behaviors.  Most observable human behaviors can have multiple causes.  Just because you can recreate a facsimile of those observed behaviors in mice doesn’t mean there’s any causal relationship between what you did to the mice and what happens in a normal, naturally-developing autistic human.  That seems pretty obvious to me.

So what is the scientific value of scanning the brains of these artificially created autistic mice?

I totally get testing out the scanning technology to make sure it works.  I also see the value of the scanning technology; I suspect it’s going to help researchers gain a better understanding of the working differences between so-called “normal” brains and autistic brains.  (Though, I disagree with these researchers starting with the assumption of pathology or wrongness.)

But what conclusions can we really draw from scanning the brains of mice which scientists have manipulated to demonstrate autistic-like behaviors?  Do these scientists really think they’re going to gain insight into naturally-occurring human autism by scanning the brains of these mice?

Am I missing something?  Really, if you understand this leap of logic, which to me seems like driving off a cliff versus jumping to a different level of reasoning, please share!

On another note, this seems a bit more promising:

This type of finding—an inherited difference that cannot be explained by variations in genes themselves—has become increasingly common, in part because scientists now know that genes are not the only authors of inheritance. There are ghostwriters, too.

…

It also adds another layer of significance to our daily lives. A number of environmental factors, from nutrients to temperature to chemicals, are capable of altering gene expression, and those factors that manage to penetrate germline chromatin and escape reprogramming could, in theory, be passed on to our children and possibly our grandchildren.

…

Given the elusive nature of inherited epigenetic modifications, it seems that, despite decades of investigation, scientists remain on the brink of understanding. The possibilities, however, seem endless, even with the constraint that, to be inherited, epigenetic modifications must affect gene expression in the germline, a feat that even genetic mutations rarely accomplish. But with the skyrocketing prevalence of conditions such as obesity, diabetes, and autism, which have no clear genetic etiology in the majority of cases, as Brunet pointed out, “It seems that all complex processes are affected by epigenetics.

While scientists continue to search for definitive evidence of transgenerational epigenetic inheritance in humans, the implications so far suggest that are our lifestyles and what we eat, drink, and breathe may directly affect the genetic health of our progeny.”

What can I say?  I like it when scientists discover that what they knew wasn’t all there was to be known.  This is the science that attracted me so much in my childhood:  Science as exploration and discovery, not science as a god or using science to “prove” politically- or ideologically-motivated beliefs.

The idea that nurture might affect nature as a ghostwriter appeals to me.  Our lives are not predetermined by the genetic makeup of our ancestors, but products of on-going choices that echo through generations.  And we just might have a scientific way to study a portion of that phenomenon.

Willy recently got glasses to help him see.  Just in case we needed proof—aside from not being able to see the board and headache complaints, and the optometrist’s expertise—Willy’s bowling game jumped by 30 – 50 points his first time back with glasses.  That’s three to five whole sets of pins.  So, his glasses have a pretty dramatic impact on the quality of his vision.

The problem is that Willy often forgets to put his glasses on.  He claims he can’t tell the difference between when he’s wearing his glasses and when he’s not, so he tends to forget them.  Perhaps it’s that my eye sight has been so much worse than his for so long, but I can’t imagine not being able to tell I’m not wearing my glasses.  For one, my skin is so sensitive that I can’t help but know.  I can feel them.  I feel the pressure behind my ears and on the sides of my nose.  Of course, I can’t read very well without my glasses, because the letters get all blurry.  As you might imagine, I spend a lot of time reading, so that’s a big hint.  I can’t imagine not knowing whether my glasses are there, so wrapping my head around his problem of not remembering to put his glasses on because he can’t tell the difference—I’m not doing so well with that.  My most successful solution thus far is to put a sign asking him if he remembered his glasses over his shoes (which I set out each night before school).  He goes to put his shoes on, and he sees the sign and puts his glasses on first.  This keeps both of us from forgetting in the early morning busyness.

Life is full of accessories.  As the driver in the family, I usually have to remember my keys whenever I leave—and remember them again whenever I leave the car.  I’ve had to break into my own house, with three squalling toddlers and an infant in tow—because I left my keys in the house, so I couldn’t unlock my car and had already locked the house.  Of course, the times when this happened I was on my way to pick up Mark, so it’s not like he could unlock the door for me.  So, remembering is a necessity, so I have developed habits to help me—usually involving leaving them in my purse except when in use and checking to make sure they’re where I left them before leaving the house/car. 

So, how do you manage life’s accessories?  What tricks have you learned to help yourself or your children?

People define worthy attributes in myriad ways.  For some, the predominant consideration is genealogy.  Genealogical worthiness permeates much of the Bible, particularly the Old Testament, and it has hardened the hearts of many Jews, Muslims, and Christians.  There are those who are worthy and there are those who are Gentiles; there are those who are worthy and there are those who are infidels.  (Christians use both terms to describe those who are unworthy, plus they have the legacy of Election—which I do not claim to understand.)

Genealogical worthiness is also present in science, though perhaps it could be better called gene-o-logical, since scientists tend to be less concerned with the specific ancestors from whom you’ve sprung and more concerned with the actual genes you’ve inherited.

Genealogical worthiness also permeates politics.  Both Nationalism (which can have some positive aspects to it) and genocide (which is 100% negative) are products of political ideas of genealogical worthiness.  But there are others.  Eugenics was a strange hybrid of politics and science, and its effects linger in contemporary politics despite the many efforts to destroy this debunked theory.

But genealogical worthiness is far from the only consideration.  After all, nobody chooses their genealogy and many of us are willing to give at least a little consideration to choice.  Those who choose to pursue higher education are often considered “more worthy” than those who don’t—considerations of equal opportunity are often negated in these arguments.  Those who choose to purchase responsibly are often considered “more worthy” than those who don’t—what makes a worthy purchase depends, of course, on the prevailing perspective, from the responsible use of credit to green living and many considerations in between.

And, of course, worthiness is also a matter of ability.  Those who are able are obviously more worthy than those who aren’t—and for many this belief is so obvious, so strongly assumed, that the assumptions it is based on are never even questioned.

The worthiness of people with autism is degraded on all three counts.  Genealogically or gene-o-logically, autistics are inferior.  There’s something wrong with the genes and that makes them at least susceptible to autism.  Shame on them.  They’re not worthy.  But, of course, being autistic—at least, acting autistic is a choice.  Passing—the contemporary equivalent to being cured—is a choice.  It’s a choice to do the work to be able to pass and it’s a choice to do the work to actually pass.  Those who fail to pass have made the wrong choices—opportunity, or lack thereof, to learn effective passing strategies is irrelevant, because if they really wanted to learn, then they would have.  Choosing not to pass makes them unworthy.  Shame on them.  Finally, ability makes them unworthy.  They are not as able as neurologically typical people, and they should be.  They should be able to mingle successfully in a crowded room full of noisy party-goers.  They should be able to sit quietly in a classroom and absorb the teacher’s lectures like a sponge.  They should be able to hold down a job without accommodations—who do they think they are to ask, they’re not even worthy to have a job considering how many able people are out of work.  Shame on them.  Strike one, strike two, strike three, autism is out.

The above paragraph is, of course, an illustrative example.  I believe it happens; I believe people think like that.  But I am not one of them.

Human worth cannot truly and accurately be measured by our genealogy (or gene-o-logy).  Human worth cannot truly and accurately be measured by our choices, at least not without considering our genuine opportunities and our unique circumstances.  (And it shouldn’t be about how much we choose to accomplish in order to “prove” our worth, but whether we choose to hurt others for personal pleasure and gain.)  Human worth most certainly cannot be measured by our abilities.

Hello, I am the mother of three children with autism.  I am worthy to live, to reproduce, and to raise my children.  All four of my children are worthy of living, dreaming, loving, and having opportunities for personal growth and betterment.  Whether you are autistic or not, you are worthy.  Whether you are college educated or not, you are worthy.  Whether you are rich and powerful or not, you are worthy.  Whether you are able to live a normal and independent life or not, you are worthy.

You are of infinite worth beyond human imagination just for being you.  And so is everyone else.

Last week, not realizing this new pattern, I let Alex play with the Kindle right away.  He had about five or ten minutes on it and then he had to be done.  Oops!  Alex took it remarkably well, at least as far as giving up the Kindle and getting ready to go goes.  He was mad at me, though, and he made sure I knew it.  Oops!  I hope to do better today.

Now, don’t get me wrong, it’s not that I don’t empathize with Mark or his role at stay-at-home dad and primary caregiver.  I do.  I was the boys’ primary caregiver for years.  Some of that time Mark was home, but a significant portion of that time Mark was off at work.  So, resuming a small portion of that role on Monday afternoons is no big thing.

But, we’ve all changed in that time.  And if I don’t work, I can’t help meet our financial obligations.  It’s strange.  We’ve slipped into our role reversals quite well; we’ve become used to it.  But every once in a while there’s that twinge—wanting to go back to the way things were.  I get over it, of course.  I have too much invested in my writing career to stop now.  But, I suspect it’s a good thing that I get that twinge.  And I doubt it’s going away any time soon.

A new normal is forming around Brandon’s presence and his absence.  The other boys, who usually have trouble transitioning, have adjusted rather beautifully.  It’s me who resists the transition.  It seems almost unreal.  I don’t feel like enough time has passed for a pattern to have developed.  Yet there’s an “as usual” that has developed with me unawares.

Sometimes these major life adjustments can be easier than the minor ones.  I wonder if it’s a matter of perspective and one’s sense of control.  Perhaps the boys expect more control over the minor adjustments, but take the major ones in-stride, because they don’t expect control.  Willy, with his sense of what should be, has had the hardest time accepting this solution.  And then, there’s me.

Of course, just so I don’t feel too stable, the last two nights that Brandon was here he decided to go back to the living room and sleep on the couch.  And I was just getting used to have the living room back.