Fourth Graders, wrinkled brows and failed attempts.

 

 Blake and John Muir -- And a ducky that he likes to chew.  Blake, not John Muir.  From our Yosemite trip in April.

Written during Autism Awareness Month.......

 

I just left a 4^th grade classroom.  OF sweet, typically developing kids.  I gave a presentation about autism awareness, which attempts to explain autism and encourage students to including autistic kids in their activities.  I came up so short.  Explaining autism feels impossible.  It is not cohesive.  I sound like a phD student (or wannabe) when I try to go into autism-explanation-mode with adults; riffing on neurotransmitters, individuality along the spectrum and whatever other $15 word I can regurgitate to try and educate people about it.  I always come up short.  The more you try to define it, the more confused kids and adults alike seem to get.  The expressions, the squinty eyes, the “huh?” expression, the “why does she keep talking but still not make any sense?” looks are ones that are usually floating around at the end of the discussions. 

Honestly, their questions are my questions;

            What causes it?

            Does it get better?

            What is it?

The answers I have to these questions are so frustratingly vague.  And flawed.  The answers I have, the ones I know, well, they aren’t universally true.  So now, instead of trying to raise awareness for autism, I get fearful that I could in fact be mis-informing people.  At this point, I think I’d have a better shot at defining heaven.

Example:

Q: Can you have 2 of the symptoms of autism but not all 3?

A: ummmmmmm yes? 

Here’s what I want.  I want all of the typical kids to have empathy for kids and adults that are differently abled.  I want the typical peers to include the special needs friends and help them thrive.  I want kumbaya homies.

But instructing this want, well it feels like trying to define the ether, or love.   I’m sure I said something so wrong.  Because “if you know one person with autism, you know one person with autism”.  Generalizing doesn’t work. 

The kids have other questions that come up almost EVERY time.

Q:        Can I catch autism?

Q:        Does it ever go away?

Q:        How is it cured?

A:  ummmmm NO, Not really and we don’t know?!?!

So, if I negatively impact you, or your loved one on my crusade to try and help, please know that I am truly sorry.  But in my mind, talking about these things, even if they are confusing and messy, well, isn’t that better than not saying anything at all?

Pants, Zerberts, moments of joy and the bright side

Disregard the dog and the little lady in this shot :)  Blake in the outfit I chose.

Pants

There is grief, sadness, anger, jealousy.  It is hard to watch, when your child struggles, because you don’t want this for them.  When they are so different than everyone else is…… it….. is…… sad.        

And it doesn’t stop.  And if you allow it to, that sadness can take away from the joy that is there. What an incredible monumental challenge it can be to be joyful sometimes.  To deny the shadow.  To accept the joy in its moment for what it is, and not what it isn’t or could be.  The strength it takes to be fiercely joyful;  amid--- pitying looks, and ignorance of the milestone you witness.  It’s exhausting, but you crave that strength, that joyful opportunity.  You hope for it, you pray for it and you hold your breath for it.  What a beautiful and difficult existence parenting a special needs child is.  You’re forced to measure by your own standards, which you update and modify according to your moment in time.  According to the goals of your family.  According to what you think your child can do, and what you push for.  According to what is important to you.  

I’m able to dress my son in button down shirts and outfits I pick out.  After a fair amount of work, he tolerates the clothes I want him to wear.  He doesn’t have the ability to object to the color or the style, and he acquiesces because he has to wear clothes to school and he can’t dress himself.  So while it would be great to not have to put his pants on for him, this is my victory.  I get to dress him in what I think is “cute’’!  There are moments, where I’m snapping his pants in the morning, and I feel sad.  He’s getting taller, he’s growing older, and I start to go down the bad path.  

“I’ll bet none of the other moms have to do this.”’

“I’m going to have to do this forever.”

“What’s going to happen to him when I can’t do this?”

And none of these thoughts make me feel better.   

Not only are they not entirely true, they are also not helpful.  Because there are things to be done, there are joyful moments hiding in the upsetting ones, and the day isn’t going to be a great one if you focus on all of the “nots” in your own life.  So if I go down the bad path, I pull myself back up and try to remember;

“So few people have as much time with their child as I do.’’

“My child is so beautiful”

‘’I’m grateful we have clothes to wear, and a healthy set of legs and arms to put them on”’

‘’I’m going to give him a zerbert and make him laugh’’

 
 

There are plenty of things that aren’t what I want, but there are multitudes of things that I’ve been given that are far greater than I had ever hoped.  Worrying about tomorrow, next year, and ten years from now isn’t helpful.   It’s also not going to be what I anticipate.  It may be better, it may be worse.  So for now, I have to work on keeping in mind the thing in front of me, or at least up to the horizon of my day.  And enjoy the bright side.