Tuesday, April 2, 2013

Blue Is Such a Nice Color

Maya thinks so; it's her favorite.  Although, catch her on any day and she might also tell you that X, Y, and Z are also favorites.  I'm not quite sure we have the idea of "a favorite" down quite yet...

But, blue is such a nice shade... and it's also part of the "Light It Up Blue" campaign to raise Autism Awareness.  Today, April 2nd, is World Autistm Awareness Day and the month of April is considered Autism Acceptance Month.

I had a parent tell me once that, if you've met one child who has been diagnosed on the Autism Spectrum, then you've done exactly that: you've met one  child.  One of the things that makes ASDs so very hard for both those diagnosed and those who love them is that there really isn't one marker or one BIG thing that announces to the world "Hey, I'm a person who is autistic, I'm not a troublemaker/whiner/spoiled child/etc."  There's nothing that says "I'm trying to deal with this situation in the only way that I can process" instead of "No, I'm not just throwing a fit because I want to piss you off or because I dont 'know how' to behave."

Most people will see Bobby and see a child.  I'm grateful for this.  I'm grateful that many of his symptoms of PDD-NOS are ones that he is learning to manage and that, although it is a slow journey, it is a progress.  Every email from his teacher that says "we had a GREAT day today" or extols his helpfulness or the way he's mimicing other children or how his speech is taking off, is one that gives me so much hope for his future and for him being able to reach to whatever stars he wants to grab.  The fact that I'm able to take the kids out to the store and grocery shop for an hour... or to the park to play... or that I can ask our preteen neighbor to babysit and that things will be okay... these are huge.  There are so many parents I've met with children who have special needs, an ASD diagnosis being a large part of it, that can't do those simple things.  I dont worry about what will happen when a new baby comes into the home (I mean, other than your typical oh-my-goodness-I'm-going-to-have-two-4 year olds- and-a-newborn.); Bobby is such a compassionate, sweet child. 

It's hard to talk to people who have a preconceived notion of "autistic children".  They are violent. Dumb. Angry. Full of rage. Speechless.  They want to hurt themselves.  They should be institutionalized.  There is a lack of understanding and compassion; especially in public.  How often we've seen parents with an unruly child.  I've heard things that make my skin crawl and make me want to puke.  Comments made by strangers about how if someone would just smack that child... If the parent would learn how to parent... How people shouldnt bring "bad kids" out in public.  Rarely have I heard someone say "It's okay." or "How can I help?"  Like I said, I've been really fortunate.  It's rare I've had a comment or even a nasty stare.  For the most part, shopping and things are okay.  We have had our days, but usually its okay.  But sometimes I wonder how the other parents to Bobby and Maya's classmates view him.  When we are at a class party and he has his aide with him... when he cries because he is not the calendar helper... when he needs help to do the motions of a song or to stay focused on the story during circle time.  We are lucky, I think; the parents seem great.  Early on, before Bobby had an aide, we were at a party and he freaked out because he wanted me to hold him (instead of him sitting down) once he saw me.  Trying to get him back in the swing of the classday wasnt easy and there were a lot of tears.  One parent whispered to another, "Oh, I wonder what's wrong with that kid?"  They werent being mean; I mean, hey, I probably would have wondered too.  Another parent, who I know, put herself into that conversation and said, "He's autistic and he's learning the new environment."  That one word- autistic- which could carry so many negative thoughts, seemed to make sense to the parent with the question and later on, the mom actually talked to me.  At the Valentine's party, she mentioned that Bobby had come so far and was doing so well from the beginning of school.  She asked if the autism diagnosis was correct because she'd never heard of anyone being "cured".  While I dont know if the PDD-NOS diagnosis is correct or if Bobby has an ASD, or if it is simply his prematurity being thrown against the language delay and some sensory issues, it gave me hope to think that his struggles- while still there and still visible- are ones that he is working hard to learn to cope with. 

Regardless of a diagnosis, that is 1 of 2 huge things that parents of special needs children (regardless of those needs) want.  We want our children to be able to learn to cope with the struggles that they will always have and to work through- no matter how slowly- the ones they can learn to mitigate and heal. 

The second big thing?  Acceptance.  And that, I think, is what today and this month is about.  We want what everyone wants: acceptance.  We all have struggles and most of us can cover them from the general public; but there are those who cant, for a variety of reasons.  Acceptance...  It's something we can all learn from and something we all need to take to heart, regardless of the people we encounter.

The child who doesnt make eye contact with you at church... Who doesnt respond to her name or answer your questions... Who doesnt play with your child at the park.  The person who rocks back and forth and screams violently in the supermarket... the child who throws a fit in the store because there are no socks of a particular color... the parent who is trying so hard to ignore the stares and whispers and instead love and help their child as best as they can. 

Acceptance.  Love.  Help.  Understanding.

Maybe the person you see is just having an off day.  Maybe it is a case of a kid who has never been told no and fits into your definition of "spoiled" and just needs to work it out.  Maybe it is a case of bad parenting or bad manners or whatever else your thoughts might run to.  Might be.  Could be.

Or maybe that is the best behavior that person has in that moment.  Maybe there is something else completely at work and this moment, which may pass in mere minutes, is the culmination of a person who can no longer handle the sensory input they are getting and has no other way to respond.  Maybe the lack of eye contact isnt a person being disrespectful but is really a behavior that allows the person to focus on what you are saying to them or the situation they are in.  The kid at the playground?  He might be learning how to engage in social settings and not know how to play with another yet.  The child who doesnt respond may not have any way to get the words trapped in her head out.

A child with autistm isnt mean or bad or stupid; they just fit outside the box.  The ways of how much outside the box they may be varies from child to child.  When you've seen one, you've seen one.  Just like a typical child. One child is one child.  While we may say that things are typical for age or development, every child is like a snowflake- unique and special and wonderfully perfect.  This is true of a child with an ASD, just as it is true of a non ASD child.  They are who they are.

We are who we are.

Blue is a beautiful color.  But it's still just another color in a sea of colors.  All beautiful in their own way. 

Just like our kids, our siblings, our parents, our families, and our friends.

Just like each one of us.


Barbara said...

Perfectly said.

Anonymous said...

Thanks for posting this. I jut did a ost on being an adult with autism today. Sobit2013.wordpress.com xoxo Kandi Ann