Archive for January, 2012

Autism Awareness

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Twenty-one years ago this past Monday, I gave birth to a beautiful, healthy, baby boy.  He weighed 7 lbs 11 oz.  He was 21 inches long.  I was so excited by his arrival!  His birth had been easy and quick, on this, the day I had chosen for his birth because nine is my favorite number.  I will never forget the first time I saw him.  His perfect little face.  His chubby little body.  I will never forget the smell of him.  Snuggling him close as he nursed.  The very sight of him was, and still is, pure magic to me.

My son is my hero.  You see, my son has autism.  He does not speak.  In fact, he has a great deal of difficulty communicating even his most basic needs and wants.  It can’t be easy being non-verbal in our world.  Simply existing cannot be easy for him.  The constant bombardment of stimulation from all the sights, the sounds, the smells, the touches.  But he does it.  He has somehow learned to cope.

We have made progress but it hasn’t been without having to do battle.  I have watched him endure and overcome so much.  Sensory issues have always troubled him.  There was a time when he couldn’t tolerate being barefoot in the grass.  He couldn’t keep his clothes on because the touch of them against his skin was an irritant.  We kept the house silent for he simply could not bear the noise from the TV or radio.  For many years, I couldn’t get him to leave the house without carrying a small oscillating fan with him to spin; or worse yet, a blender without the lid.  If you haven’t been exposed to autism, you probably think that sounds crazy.  Maybe it is.  But it is what it is, and just like parenting any neurotypical child, you choose your battles wisely.  Some days, everything is a battle.

For years my son, who is very orally defensive, had only a few items he would eat.  Now, I am going to tell you this drove me crazy!  I was in a constant state of horror over the quality (or lack thereof) of the food he was eating.  If it wasn’t round, brown or crunchy, forget it.  And he had some type of internal rule.  Being crunchy was good if you were a potato chip, but not if you were a carrot stick.  Being round was great if you were a chicken nugget, but definitely not if you were a pea.  And brown was great for french fries, but not so good for oatmeal.  I can only imagine how horrible it would be to not even be able to enjoy your food.  We worked long and hard with occupational therapists to build his tolerance.  Today, there’s not many healthy foods he won’t eat.  He loves fruit, raw vegetables, and meats.  We have gotten past the preference for round, and the preference for brown, but he still prefers crunchy.

There are a million different struggles we have had to face.  There will be a million more.  Short of Divine intervention, my son will not be able to live independently without constant care and supervision.  This is something that I have had to learn to accept, while still doing all I can to offer him every opportunity for progress and as much independence as he is able to achieve.  I’m not gonna lie and tell you it’s easy.  Every day of my life I worry about what will happen once I am gone.  Who will watch out for him?  Will there be money to provide for him?    How will I make sure that he is kept safe and surrounded only by love?  There are good days; there are bad days.  There are days when I still hurt from the diagnosis even after all this time.  But I am so thankful to have this child in my life.

No, things aren’t how I thought they would turn out 21 years ago when I held my baby and admired him.  All I can do is work hard while I am here.  I try to soak up every minute I have with this beautiful boy and I thank God for the wonderful blessing that he is to me.  He is such an example of tenacity for me.  He makes me want to be the very best person possible.

 

There is a poem that I have kept on my refrigerator for many years.  It reads:

Kids Who Are Different

Here’s to the kids who are different,

The kids who don’t always get the A’s,

The kids who have ears twice the size of their peers,

And noses that go on for days…

Here’s to the kids they call crazy or dumb,

The kids who don’t fit, with the guts and the grit,

Who dance to a different drum…

Here’s to the kids who are different,

The kids with the mischievous streak,

For when they have grown, as history’s shown,

It’s their difference that makes them unique.