Day 3: More Than Words

I feel the need to add a bit of a disclaimer here.  I am writing exclusively about my own personal journey with autism.  There is a saying in the autism world, "Once you have met one person with autism, you have met one person with autism."  Autism is a spectrum disorder, meaning, that there is an incredibly broad range of behaviors, symptoms, etc.

The National Institute of Health gives this definition:

"The pervasive developmental disorders, or autism spectrum disorders, range from a severe form, called autistic disorder, to a milder form, Asperger syndrome. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD-NOS). Other rare, very severe disorders that are included in the autism spectrum disorders are Rett syndrome and childhood disintegrative disorder."

If you would like to read more autism you can go here or here.

So, like I was saying, every person is very different.  My experiences do not necessarily reflect the experiences of other families who have a child with autism.

I just felt I needed to put that out there.  Ok, now I feel a little better.

Now, back to my personal experience...

In many cases, but certainly not all, kids who have been diagnosed with autism, started out developing typically in the first year or two of their life.  This was the case for us.  Evan's first year seemed pretty dang typical to me.  He hit all his milestones,... he was smiling, playing peekaboo games, playing with his toys appropriately, starting to babble, gesture, etc.  You could clearly see that he was here, with us, in our world.  All children have this undeniable light in their eyes.

But, it was only maybe a only a few months after these pictures were taken, that things really began to change.  He started to regress.  He stopped interacting with others, he stopped babbling, he stopped smiling, all social development pretty much halted.  He slowly began to drift into his own little world, separate from ours.  And my sweet happy little boy went from what you see above to the one you see below...

Still incredibly beautiful, sweet, handsome, but just very distant.  The look in his eyes changed.  It's not that the light wasn't there at all, it just seemed like it had been dimmed.

Now, I am not really going to delve into what I think brought about this change in him.  This would bring me to the extremely controversial subject of vaccines.  I am just not going to go there right now.  Maybe later...


Anyway,...  this all brings me to today.  As the years have passed, and Evan has spent hundreds of hours in therapy, special schools, etc., the light in Evan's eyes has reemerged.  He is not exactly the same kid he was in his first year of life.  Many would say that Evan is definitely on the more severe end of the spectrum and I would say I agree for the most part.  I know he will never be able to live on his own and that we will always have to take care of him in some way or another.

He is now 7, and still does not have any words.  I was told by many, "Oh, don't worry,... he will talk"  Well, as the years have gone by I have come to accept that Evan will probably never talk and I am ok with that.  It's not that I've given up, it's just that my perspective has changed a bit.  Don't get me wrong, words would be nice, especially during times when Evan is sick or upset and he can't tell me why.  It is during times like these when I miss the words the most, but words are definitely not essential to communication.

What inspired me to write this entry today was a conversation I had with my husband last night before bed.  We were talking about Evan, and how this week (unlike last week) was really good for him.  There was no crying, meltdowns, etc.  He was incredibly sweet and pleasant all week long.  I started thinking about the events that take place each morning before I send him off to school.   Right before he catches the bus, I kneel down in front of his face so I am at eye level with him, and help him zip up his jacket.  It is then, that Evan almost always looks right into my eyes, touches my face, and smiles.  As I was telling Marty about this, I suddenly realized I was getting really emotional (and honestly I don't get emotional very often).  I think it was because at that moment I realized that even though Evan can not say the words "I love you, Mom", he actually has been telling me with his actions almost every morning.  Sure, I would love for Evan to say the words "I love you, Mom".  What mother doesn't want to hear that from their child?  But, again I was looking past the mark, failing to see what was right in front of my face.

Evan is severely autistic in many ways, but socially,... I think he is way ahead of the pack.  Sure he doesn't talk, but don't we always say actions speak louder than words?  Well, in Evan's case there is no other alternative. I will take his way of expressing his love over words any day. :]