Autism Awareness Day

Today, April 2nd, is World Autism Awareness Day.  1 in 68 children in the United States has an autism spectrum disorder.  1 in every 42 of our boys.

Do you find that astounding? I do.

There is a tendency to get wrapped up in the "feel-good" stories out there.  Stories about ASD kids overcoming odds.  Not only surviving, but thriving.  And of course, those are heart-warming and encouraging.  But on a day like today, I think of all the families across America like mine- the ones who have their lives completely rocked by autism- and I think I owe the world a little honesty.  You know, to keep it real.

I am going to be honest and tell you that I am not one of those who finds comfort in thinking autism is a special gift, a unique perspective of the world.  Truthfully, I Hate autism (yes, with a capital H).

I know I have not been active on this blog over the last few months, but here is a little story from December that I have been meaning to share.

In late December, we took a trip down to Houston with Lochlan to get out of town for a few days.  We visited the Children's Museum, an aquarium, parks, etc.  All in all, it was a decent trip.  On the drive back home, we stopped at a McDonalds in Corsicana, TX.  Lochlan enjoyed the opportunity to stretch his legs in the PlayPlace.  There were two older girls there as well.  They looked to be about 7 and 9.  They watched Lochlan as he ran wildly from one point to another, babbling excitedly.  The girls laughed a bit at him, but I didn't think much of it.  
Later, when we were feeding Lochlan, Sachin told me that he had heard the girls talking.  The younger girl had said, "Look, he's a big boy but he acts like a baby."  The older one saw Sachin watching and shushed the younger one.

I heard this and instantly burst into tears.  There I was, sitting in this McDonalds in Corsicana, TX, crying my eyes out over a child's innocent, but so painfully accurate words.  As a mother, it tore me apart.

Lochlan is on the tall side for his age and he is reaching the point where other children approach him in play situations and try to engage him.  They naturally (and rightfully) expect a child his size to be able to respond and for the first time, I have to step in to navigate him through these situations.  He is only vaguely aware of other children and has no idea how to interact with them.

Lochlan was recently re-evaluated on his skills.   He will be 3 at the end of this month, but most of his skills testing revealed he is operating at around 18 months of age (cognitive, social, adaptive skills).  His language skills are still below 1 year old.  He is still nonverbal in that he does not use any distinguishable words for purposes of communication, and his receptive language skills are very weak as well. 

After spring break, I overheard a co-worker talking about how she took her daughter to a movie.  I smiled, thinking how nice it is for teachers to be off at the same time as their kids and how fun it must be to have a movie matinee date in the middle of what would have been a workday.  Then my smile faded slightly as a thought hit me-- wow, I wonder if I will ever take Lochlan to a movie.  Given his current language skills, he doesn't understand things he watches so I can't imagine it would be something worthwhile to attempt.  Maybe one day he will be able to understand enough to be able to do it.  But the fact that I have to wonder about it made me sad.  Just another reminder of how the experiences I had assumed we would share, the things I took for granted, are up in the air. 

So yes, I Hate autism.  I hate this thing that robs my son of the ability to communicate with me, of the ability to interact with the world in a functional way.  I hate that he is missing out on so much that I want for him.  Is he happy? Yes.  Some argue that is all that matters but that does not console me.  Of course I want him to be happy and content but I still Hate autism and hate that Lochlan's future is a giant cloud of uncertainty.

I can hold out hope that things will improve for Lochlan, but that is another issue.  What I am talking about here today is that there are many many families out there who have children with moderate-severe autism like Lochlan.  Every ASD child is different but I feel a kinship with all these families I have never met who struggle with the same challenges that we do.  Please remember those families today.

I am probably not the only ASD parent who has broken down in a McDonalds PlayPlace.  

1 in 68 is a terrible terrible number.  An epidemic.  I pray that researchers can one day definitively tell us why this is happening to our children so we can work on prevention.  

I LOVE my son to pieces.   He is truly a joyous, peaceful soul and I can't imagine my life without him.  I do not overlook his gifts and everything precious and special about him.  He touches the heart of everyone who meets him. 
But if I could snap my fingers and magically rid him of autism, you bet I would.  I want all of Lochlan, not just the bits I get from him in his moments of clarity.  I may never get all of him, but that will never stop me from wanting it. 

I'll leave you with a few pictures of Lochlan from March.  I hope you experience for just a moment a little bit of his joy. :)