Don't Get All Emotional

One myth I seem to hear a lot of lately is that autistic children and adults do not show any emotion, or that they don't have any facial expression.  I've written about this before, but that was a while ago, and I feel the need to address it again.  Nothing could be further from the truth.  I can think of nothing more emotional than autism itself.

First we need to look at this myth and ask ourselves where it came from.  It's difficult to tell and we may never know.  It may have been born from an innate misunderstanding of ASD.  Early on autism was classified as "childhood schizophrenia".  That definition, coupled with glamorization from the media, painted a picture of autism that was highly inaccurate.  What kinds of pictures come into your head when someone mentions the word "autism"?  Do you imagine a head-banging, screaming child?  Do you imagine a poor little soul trapped in the depths of catatonia?  Do you picture a non-responsive dreamer who is replicating a Picasso with crayon on his living room wall?  All of these are aspects of autism but they are exceptions to the general rule.  The biggest challenge that autistic children deal with is the inability to communicate effectively.  Some of them, as I've mentioned many times, are non-verbal.  So getting their wants and needs addressed by their parents or teacher is an almost insurmountable challenge.  This begets frustration.  So much so that they may engage in behaviors that are odd and do not make any sense to anyone around them.  They scream a lot.  They scream in different ways for different reasons...out of pain, hunger, joy, fear, and sometimes, simply because the vibration of their vocal chords feels good to them.  They may keen and wail out of distress, or to drown out other noises that are bothering them.  Does this mean they do not display emotion?  No.  They are.  Some of them do it in a different way than you or I.

Several times a day, my son comes to me and proclaims that he loves me.  He is autistic.  He is an autistic child who hugs and kisses his mother and says, "I love you."  Sometimes he does this almost frantically...and what he is really saying is, "I feel insecure and I don't know how else to tell you except to say I love you over and over again."

Some autistic and Asperger's children do not have an emotional vocabulary, or they may display inappropriate emotions during certain situations.  For example.  You and I both know how to tell someone when we're angry, or sad.  We know the words for that.  We know what those words mean.  And we are able to distinguish between more complex emotions, such as, "I'm not angry, just disappointed."  "I'm not just happy, I'm overjoyed."  Autistic children don't have the words for this.  That doesn't mean they don't feel it.  They may laugh when they are, in fact, nervous or scared. or they may cry out of the blue for no reason.  This doesn't mean they don't show emotion or exhibit facial expressions.

Autistic children also have problems controlling their emotions.  When my son gets frustrated about something, he expresses it in a very big way. A small upset, such as not finding the shirt he wants to wear, can lead to a lot of screaming.  It is only because his world is ordered in a certain way, and when that order gets upset, so does he.  Boredom may elicit more screamng, or he may decide to poke his older brother over and over again.

In spite of all this, I have to say that in my own son at times I have seen an incredible sensitivity. There have been times when I have been rocked by emotion...upset by an event or some experience I had.  During these times he has quietly approached me and pushed my hair away from my face.  He has given me little kisses...different from the frantic, overwhelming ones he normally peppers me with...and whispered, "I love you."

Tell me again that they don't show emotions.  I will show you that you are wrong.

I Want To Do Everything.

Starting school again has been amazing.  It reminded me of just how much I love to learn new things.  The problem is...I want to do everything.

When I was growing up I had really grand plans.  I wanted to be a famous author.  I was going to go to college and major in music performance and play for a symphony.  And I was going to travel...to every country and every place I could possibly get to.

Life doesn't turn out the way we want to.  I'm still working on the author thing.  Music performance was something that happened for me, but in a different way than I imagined. My own daughter chose to play the flute this year...despite repeated assurances from me that it didn't matter what instrument she picked as long as she was happy with it.  She still chose the flute.  I feel like I came full circle the other day when she opened her book up and said, "Mom, I have to learn how to play this."  I looked.  It was one line of notes.  The title of it was "Hot Cross Buns".  I groaned.  When I was learning how to play, my mother made me practice for an hour each day after school.  For a novice player, this is a lot of time.  Your lungs aren't fully developed and it's extremely repetitive because you don't know all of the notes yet.  That song..."Hot Cross Buns"...I got so sick of that song.  And here was my daughter, practicing away...and although that symphony dream is still there, in the back of my head, I feel like I have been blessed.  Being able to watch my daughter discover this talent, and know how to help her if she needs it...that is priceless.

So here I am, going back to school, trying to stay focused because I find everything just so fascinating.  It would be so easy for me to get distracted and just start taking random classes, but I can't do that.  And it's frustrating because I know, in this life anyway, I will never have enough time to learn everything I want to learn and do all the things I want to do.

The other day a friend shared this quote with me, and now I'll share it with you:  "Live as if you were to die tomorrow.  Learn as if you were to live forever" -Mahatma Gandhi.

You're Hired!

This week I started editing an old resume I had in my files.  The thought had crossed my mind that it's always a good idea to keep an updated resume on hand, and so that's what I started doing.  Job searching for me at this point is laughable, because my schedule is already so packed.  As I researched different resume styles and the no-nos that come with sending out a contemporary resume, I started thinking about job descriptions.  We've all read those articles, where it details the all the different jobs that a mom does.  My own mother in law once kept a running tally for a month of all the things she did, then researched how much it would cost to hire those things out or pay to have them done.  The bill for one month of those services was staggering.

I realized when I was putting my resume together that I have such a mishmash of job experience that if I were to tell someone about it, they would probably screw up their face and say, What were you trying to do?

I'm not sure.  I was trying to live.  I can look back at the last fifteen years or more and say that I have done the following:  pharmacy technician (before they had to be licensed...scary!), file clerk in a real estate office, travel agent, clerk in a furniture store, salesperson for children's and women's clothing, carhop, reporter for local newspaper, clerk in a grocery distribution warehouse, realtor.

It was a little disheartening to put all of that together.  I never finished school, for a variety of reasons.  I went on to get married and have four kids.  Now I'm going back to finish, at the age of thirty nine, and I wonder, did I waste a bunch of time?  What could I have done differently?  And the answer I always come up with is nothing.  Circumstances being what they were at the time, there wasn't anything that could have been changed.  And so I had to conclude that what was the most important was the job description I have now, and if I included it on my resume it would go something like this:

Professional caretaker for special needs child, twenty four seven, seven days a week, barring when he's at school.  Personal advocate for special needs child.  Private teacher for thirteen year old boy, covering math, science, world studies, health, language arts, electronic media, art and religion. Professional caretaker for said boy, plus his two sisters.  Private flute teacher.  Private chef for busy family of six.  Accountant for family of six.  Bundle service (laundry).  Teacher for girls, age 12-13, Sundays and occasional Wednesdays.  House cleaning service, as needed.  Writer, musician, and jewelry craftswoman.  Activity planner and party planner for family of six.  Professional shopper (hey, for real..someone has to know a good sale when they see one!)

And so I wrote this down, and then I thought...I do a lot.

To all those moms out there...don't sell yourselves short.  Sometimes value isn't measured in dollars.

Around and Around and Up and Down

Yesterday I took Logan to another therapist that we found close by.  When I made the appointment, the receptionist suggested getting Logan re-evaluated.  I agreed.  It's been three years since his last evaluation.

What is the purpose of re-evaluating a child?  What can we expect from having this done for him yet again?  Besides filling out the now-familiar reams of paperwork and answering questions regarding his behavior and how he performs at school, what is the point? What can we expect at the end of it other than, "Your son is still autistic.  Surprise!"

I don't expect a different answer regarding Logan's diagnosis.  There are many autistic people who, as they mature, progress to the point where their symptoms all but disappear.  They learn to cope with the bombardment of stimuli that overwhelms them.  They begin to assimilate information at a faster rate. Then there are some that don't, who remain silent for all of their days, and who do not appear on any outward level to mature as far as learning or social skills are involved.

The fact of the matter is, what we know about autism changes all the time.  While a cure has not been discovered and may not ever be, there are better therapies for dealing with autism than existed five or ten years ago.  It's more widely understood.  And that is part of why we are taking Logan to be re-evaluated.

What was interesting to me was the way I, myself, dealt with this new visit to the doctor.  I found myself sitting on her couch as Logan played, reciting almost by rote the things that Logan does and the concerns I have about him.  I thought of the way it was three years ago when, at the age of six, we took him somewhere else.  At that time, I remember sitting more on the edge of my seat, nervous and anticipatory at the same time, thinking, this woman will help my son!  And she didn't.  She was able to test him and give us a concrete diagnosis, but beyond that, she had little to offer.  That was then.

Now I find myself proceeding with much more caution.  It's not that I'm jaded.  It's more like autism is a ferris wheel.  It's a ride, that's for sure.  I love ferris wheels.  I especially love when I'm at the top, and it stops for a minute or two, and I can see the horizon.  Autism is like that, for me.  There are times when I look at my son, and I enjoy my experience with him so much.  I can picture the years ahead and know that although there will be challenges, everything will be all right and it will work out.  Then there are times when it's still like a ferris wheel, but I'm at the bottom.  It's a never ending round of stimming, doctors visits, challenges, and waiting to get to the top again.  But that doesn't mean I want to get off the ride.  Will this new doctor give us something helpful for Logan?  A new therapy or a way to help him cope with sensory overstimulation?  I don't know.  I hope so.

I went to the Texas State Fair once.  I went with a date from high school, and I can say that I never went anywhere with that particular individual again.  We had nothing in common.  We went to ride a ferris wheel.  Not the giant one that the fair is famous for, but a smaller one.  At first the ride was enjoyable.  But then the man operating the wheel wouldn't let us off!  He let other people leave, but not us.  He put a child on the seat with us.  She sat in between us and as the ride progressed around yet again, she began to complain about feeling sick and said she needed to throw up.  We were more desperate than ever to get off that ride!  We finally were allowed to leave...after half an hour of being stuck on that wheel.

Now, had I been stuck on that wheel with, say, the person I'm married to now, or one of my best friends, then I don't think I would have minded so much.  We would have laughed about it.  We would have found things to look at and talk about.  Sometimes it's all in who you share the ride with, and I am more thankful than ever for all the friends and family that are part of mine and my son's life.