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.

What Happiness Is

Happiness Is

eating when you're hungry and not punishing yourself because you ate.

moving.  Running, walking, swimming, riding a bike, dancing.  Just moving.

reading a book and getting lost in that book, especially if it's raining outside.

doing something hard and doing it well.

staying close to people who truly care about you.

letting go of things you cannot control and finally admitting to yourself that you did all you could.

extracting yourself from a difficult, painful situation and trusting God to sort it out.

laughing long and loud and not caring if you snort a little.

learning something new everyday, challenging your mind and reaching for what you thought was an impossible dream.

sleeping in.

watching your children play.

putting time and thought into a carefully planned meal, especially if you plan on serving it to someone other than yourself.  And especially if there's music on while you cook it.

not worrying about how old you are, but about how well you are living.

being completely and unapologetically yourself.

avoiding negativity.  Avoiding people who spout negativity.  Avoiding depressing books, movies, and angst ridden music.  Keeping sadness and despair out of your life while seeking out things and people that truly uplift you.

forgiving those who wronged you.

hoping that those who wronged you can find happiness also.

tilting your face up to the sun with your eyes closed and breathing.

growing things.

being honest.  Being honest with yourself, with your loved ones, with everyone you deal with.

doing all the laundry before the weekend.

watching a spooky show with your best friend.

paying off bills.

driving with music on.  Good music.

Singing.  In the shower.

taking a walk in the evening and smelling good things, and hearing people talk and music drift through the air.

petting a tame lizard.

creating.

knowing who you are, completely, unequivocally, and what you're capable of.

praying and knowing that God is listening.

Limitations

On Christmas day of this year, I will turn forty.  It's hard to take in.  I don't feel like forty.  I don't feel like a "grown-up".  But the day is coming, no matter how I feel.

I made a huge decision this year when I decided to go back to school.  I know that women do it all the time, especially single moms, out of sheer necessity.  But for me, it was huge.  I have to explain why.  My grandmother was very poor when she was growing up.  Her father was a sharecropper and she dropped out of elementary school to help him on the farm.  After that she got married at age nineteen and had one child- my mother.  Throughout the rest of her life she took care of other people and worked various part time jobs.  I once spoke to her about going to college and her philosophy was that "it's just not important for a woman to go to school. There's no need."  I didn't listen, of course.

My other grandmother also grew up on a farm.  However, her experience was different.  Her family owned their farm, grew all their own food, had livestock, and made all of their own clothes for the most part.  They were very self-sufficient.  She grew up and wanted to be a nurse.  She also got married at a young age, but fate dealt her a rough hand- her husband left her when her three children were very young.  She was encouraged to put them up for adoption, but she determined that what was left of her family would stay together.  She took typing classes at night.  She worked full time during the day.  And she eventually landed a job at an insurance company and was able to support herself and her children.  She never got to go to college but she did what she could do.  Even later in life, with her hands ruined from rheumatoid arthritis and her once quick gait reduced to a painful shuffle, she would still exercise by walking up and down the ramp in front of her house, and call all of her friends every day.  She never gave up. When she became too ill to live alone and went to a nursing home, she died within a week.  I like to believe it was because she didn't have time to sit around there, and had other things to do in the next life.

I have heard many women say, "I'm too old" to do this or that. "I'm too old to try something new."  "I'm too old to travel."  "I'm too old to exercise."  "I'm too old to go back to school."  Grandmother #1 never tried to get her GED because she would "have to be taught too much".  Yet, she could do complex math problems and once ran her own business- a daycare.

I never played a sport in high school and my first attempt at college was an absolute disaster, for many reasons.  It would have been so easy for me to say, That was then, and that time is over, and now I'm just doing this, and I can't go back and do those other things anymore.

But those are the kinds of lies we tell ourselves.  After I had my fourth and last child I started running.  I go through time periods when I don't do it for a while, but I always return to it.  My husband bought me a bicycle and even though I was embarrassed (my neighbors were standing in their garage staring), I got on that thing and suddenly remembered what it was like to be eight years old.  I discovered cardio kickboxing.  I discovered that all my can'ts were won'ts.

At the top of this page is a picture of Ayrton Senna, a Brazilian racecar driver who was killed doing what he loved in  1994 at the San Marino Grand Prix.  As you read his quote I hope you understand what he's saying...that constantly pushing yourself, constantly trying new things, will help you discover your limitations..and sometimes, overcome them.

And Then It Hit Me

I don't get out much.  I have four kids.  Sometimes getting out of the house, and being alone for a few minutes means a simple trip to the grocery store, which is exactly what I did tonight.

Summer is winding down and next week school will start.  I've enjoyed this summer probably more than any other in a long time.  Logan is finally at a point where he is learning to control his screaming, and that has been a huge relief.  We still have days that are way off...but those days are becoming fewer and fewer.

Still, after being stuck in the house all day due to a busted whatever on our van, I had to get out. I drove over to Wal Mart (there's really not much else to do at 9 pm in this town) just to buy some stuff that we were out of.  It was uneventful until I got to the checkout.  Ahead of me was a man who appeared to be in his mid to late forties.  He looked like an average guy...thick around the waist, glasses, mustache.  The woman he was with was much older than him...she looked a little tired, but otherwise very sharp and mostly focused on paying for her groceries.  As they prepared to leave the man grabbed onto the cart and looked over at the woman and said, with a slight speech impediment, "Mama?  Mama?  Is that everything?" the same way that a child might ask.

And I froze.  I'm crying as I write this because it was so simple and so sweet...the man, by all outward appearances, was just an average man...but when I heard him talk I knew that he was challenged, and there was his mother, still taking care of him so late in life...and I'm crying because the one thought that hit me, that rose above all other thoughts was this:  That's me.  That's me, and my son, in thirty years, forty years.  I will still be taking care of him, he will still be with me, wherever I go.

Some people might think this kind of revelation is idiotic...my son has autism and is a three year old trapped in a nine year old body...of course he's going to be with me.  But let me tell you.  It's one thing to know that, and tell yourself that, every day, and be aware of it.  Because of course I know it, I've known it since Logan was small, that he would always be with us, that he would probably never go out on his own and live the life his brother and sisters will.  It's one thing to know that and tell yourself that.  It's another thing...quite another thing, for someone to hold a mirror up in front of you and say, Look.  This is you, in thirty years or so.  Look.

It made it real.

And I'm not sad.  Because that woman I saw in the store wasn't broken, and she wasn't sad, she wasn't angry, or bitter.  A friend of mine once told me that expectation is really what creates the most problems for people.  People expect their lives to be a certain way; they expect certain things to happen, or they expect a person in their life to BE a certain way...and when it doesn't happen, then they get upset.  They get depressed.  Angry.  I have no expectation of a perfect life.  I let go of that a long time ago.  What I feel, after seeing that woman, and seeing her son, is affirmation.  I saw her there, and she didn't know I was watching...but I saw her in the store, late at night, with her adult, mentally-challenged son, very matter-of-factly going on with her life and paying for her groceries, walking with him out to her car with two carts full of whatever it was they got...and all I thought, was Yes.  Of course. Now and in thirty years and all the years between, yes.

Changed, Not Wrecked

Today I stumbled across an article by Carol Sarler of dailymail.co.uk entitled "Why can't we face the truth?  Having an autistic child wrecks your life..."  Here is a link to the article:

http://www.dailymail.co.uk/femail/article-1116602/Why-face-truth-Having-autistic-child-wrecks-life-.html


She went on to detail the lives of  Cath and John, who have an autistic child named Tom.  She describes all the ways that Tom's condition has interrupted their lives, changed their plans, and in general, made life a living hell for his parents and grandparents, and concludes the article with this very jaded and cynical point of view:

"But looking on, as a relatively dispassionate observer; looking at the damage done, the absence of hope and the anguish of the poor child himself, do I think that everyone concerned would have been better off if Tom's had been a life unlived? Unequivocally, yes." 

As I read through the article, many of Tom's behaviors reminded me of my own son, Logan, and some of the struggles we faced early on with him.  We did feel despair.  We did feel hopeless.  Finding help for Logan was a challenge, and it still is.  We have a tough time going out together because our babysitters are limited.  Finances are in short supply...but I can't blame that entirely on Logan, because there are six people in my family, and two of them are tweens.  I suppose I could write a whole article on how having two tweens has wrecked my life with worry and depleted my grocery budget, but why would I do that?  I love them.  And it wouldn't be an honest article, anyhow, because it would leave out too many facts and focus only on the negative aspects of raising those children.

I can't look at my life, or the life of my family, and say that it has been wrecked by Logan's autism.  It's not the life I expected to have.  As Logan grows, I am delighted by the changes I see in him:  increased communication, increased affection, more willingness to learn, and great effort to communicate, just to name a few.  I know that all parents are not so blessed.  Buy saying that Tom's life would have been best unlived is like saying that any child that poses a struggle or a challenge to a family would have been better off as just a twinkle in their dad's eye and leave it at that.  

No life ever goes the way anyone expects it to.   Logan and his autism have not wrecked my life.  It has changed my life.  I have learned so much from him.  There are so many things that I was unaware of before Logan.  The other day I was speaking to my friend Caroline.  Her son has cerebral palsy and a host of other behavioral and mental complications.  At the age of almost twenty, he can finally go to the bathroom by himself.  Speaking with her about our respective situations, we both agreed that we would not want to go back to the way we were before we had our sons.  I cannot speak for Caroline, but for myself, I was very naive and judgmental towards other people.  I had compassion and charity, but I can honestly say that Logan has instilled in me a greater sense of patience and empathy than I had before. 

Sarler also mentioned the guilt that Cath struggled with...blaming herself for her son's autism, wondering if this thing or that thing she had done in pregnancy or when he was an infant had triggered his condition.  I did this too.  When Logan was first diagnosed with autism, I wondered if something I had done had caused it.  I have since concluded that it doesn't matter.  I do not blame myself for my son's condition, because there is no way to know what really caused it.  Being a parent is all about guilt, sometimes, anyway.  You do constantly question yourself, and sometimes berate yourself, because you feel you could have done better by your child.  And you constantly worry.  This is not exclusive to autism. 

I'm not perfect. There are many days when he is not at his best and I'm not either. I wish for a normal day when I could take him somewhere and not worry about a meltdown.   But this hasn't wrecked my life.  If anything it has made me more passionate...about life, about grabbing onto opportunities when they present themselves, and about being a parent.  Would I go back and do it all again?  Unequivocally.  Yes.