Thursday, April 4, 2013

Caden's aware: No need to whisper the "a-word"

As I’m sure you’ve heard by now, April is Autism Awareness Month.  Many advocates are claiming that we no longer need awareness that our focus could and should be on acceptance.

In theory, I agree. I’d love a world that accepts my child for who is he rather than the label that he has.  A world that accepts him for what he is capable of rather than dwelling on what he can’t quite accomplish yet; a world that celebrates his difference rather than critiquing his lack of conformity. 

But before we can get to acceptance, people have to know and understand what it is that we are asking them to accept.  I’m still encountering statements like “but he doesn’t look like he has autism,” and “oh, how did he get that?” on a regular basis (the second utterance actually came from a medical staff member in our local emergency room).  Then there are the “oh he is just a little shy,” or the “I guess someone is a tad spoiled” remarks. Let’s not forget the comments about parents wanting a label in order to get “free services,” or the fact we must be “milking the system” because we have a disabled parking sticker for Caden. 

I wonder if most people really are aware of the 1 in 88 statistics and just how many children that equates to from their own neighborhood or family?  Are people really aware of the signs and symptoms of autism (things like language delays or losses, repetitive behaviors, and interactional difficulties)?  Do people understand that autism is a spectrum disorder meaning that each and every child and adult will display a different set of symptoms in varying degrees? Do they know what a fight it is to get insurance to cover what few services may be available in your region and what kind of waiting lists usually apply to these scarce resources?   Do they believe the myths or do they know the reality of autism?

Of course there are aspects of autism, like any other phenomena, that you can only understand once you are living or living with it on a daily basis.  I’m not talking about those discrete differences; I am talking about the big picture of autism.

I recently had a parent at Caden’s school comment that it must be nice to only have to go to school a half day most days.  I just stared at her, struggling to find the words to express how much my child wishes he could stay at school the full day every day.  Let’s face it; the fun stuff happens in the afternoons--the birthday parties, the trips to the park, the fun crafts, movie time. Instead of staying and playing at the park with his friends today, Caden had to come home at noon so that he could spend 4 hours involved with in-home therapy that will push his boundaries in speech, occupational therapy, physical therapy, life skills, and interactions.  It is 4 hours in the grand scheme of things that will help him have a happier and more successful life, but in the moment to a 6 year old, the only thing that mattered was a trip to the park on the first sunny day of Minnesota spring with his friends. To make amends, his dad played in the park with him for a few minutes on the way home and his last therapist of the day is going to take him to the park to play for a bit, but it still won’t be the experience of lining up and walking there with his friends nor will the play he and his therapist engage in be on the same par as that he would engage in with his friends. And when therapy is finished for the day, we will wait for the police officer to come and change his Project Lifesaver bracelet battery to help keep him safe for another month.    The myths about autism would tell you that he doesn’t know or care about any of these things, but I promise you he was crying very real tears of heart break when we left the school today and his face will be showing real signs of fatigue before the day is over.  We’ll do the same therapy tomorrow and Friday with Saturday being reserved for time with his peer mentor out in the community.  That’s the reality of autism; that’s our everyday experience.

Of course there’s more because Caden is more than autism.  There’s also his sense of humor that helps him cope with many situations, his beautiful smile and bright eyes that communicate even when words escape him, and his loveable personality that endears him to those around him. There’s his love for Super Mario, Angry Birds, and anything Wii as well as his adoration of his Packers blanket and his attachment to his IPad. But autism is a huge part of each and every day and an even bigger part for him. When we go out to restaurants or to the store, we can’t leave autism at home.  Sometimes it is loud and in your face and other times it is sweet and huggable, but it is always present.  We can’t take it in and out of our pockets at will and we can’t wait it out at home like a virus. 

So that child that you love to talk to at school is the same child screaming on the playground because he couldn’t handle the birthday song at your child’s party.  The child who gives you a sweet smile at the doctor’s office is the same child sitting in the middle of the WalMart aisle rocking with his hands covering his ears.  He’s not shy, he’s not spoiled, he’s not bad--he just has autism.  Autism isn’t a secret or dirty word in our house; we talk about it openly because it is a part of our family now. Caden knows his autism makes some parts of school harder for him and some parts of school easier for him. He knows his autism makes him really good at computer games and talking about emotions really hard.  You don’t need to whisper it, but you do need to acknowledge it. Once people know what autism really is, then we can talk about acceptance.  One step, one day, one face at a time. 

If you are interested in learning more about Caden's story, I recently had the opportunity to be write a guest blog about this very topic for Nathan's Voice: Learning To Dance in the Rain