Saturday, January 25, 2014

An Open Letter to the Autism Moms Who Think I'm Wierd....(and everybody else)

I don't socialize well.

I have anxiety when too many people are looking at me...........I can't possibly read all their faces and guess what they are thinking about me at the same time! 
I get tongue-tied and end up giggling and rambling uncomfortably.  On the way home, I beat myself up, thinking...why can't I just be normal?  Why can't I relate to people.  I feel down and completely inadequate.  I get physically drained when I have to be around lots of people and need hours of "alone-time" to recuperate. 

Today was one of those days.

Instead of getting into an explanation of all the ways I don't relate well to others, I will save that for thegreenbeangirl and keep this post focused on autism, since that's what this blog is about.

There are also many reasons I feel like I don't fit in due to the fact last decade and a half has revolved around autism.  But today, the difference between me and the rest of the world burst in front of my face like a red flag in the form of two faces with  frozen smiles and wide un-blinking eyes.

Brain:  Ok, Meadow...this is a social cue.  What is it?  Think hard what did you just say?  Was it true?  Were you clear in your execution of your sentence?  Why isn't anyone responding to you? just said 'you would love to be an aide for a teenager with autism for a week-long church camping trip'....

"I just love kids on the spectrum!", I sputtered, "You know I used to work as an educational assistant?  I just miss those kids so much!"

Blank stares...still unmoving. 

Brain: Ok, I'm coming across like a weirdo!  They think I'm insane!  How do I fix this??

" know...(laughing uncomfortably)...they have such sweet spirits...I just love to be near them!"

They remained stone-faced as they slowly looked at each other out of the corners of their eyes.

Brain: Epic. Fail.  End this conversation and leave in shame....if you can get your foot out of your mouth

Defeated and confused, I left the building completely mortified.  On the drive home, the emotions were still too raw to replay the conversation in my head to figure it all out.  I was hoping for a friend.  I was hoping to make a connection with a person.  Music blaring, I sang along to drown out my thoughts of misconceptions and self-doubt.

Not until hours later, when I let myself relive that moment, did it occur to me what these two ladies must have been thinking.

One, was the mother of the girl with autism I wanted to volunteer aide time for.  The other, was a close friend, who knew the family well.

The Mother's Brain:  Seriously?  You REALLY WANT to live my life for five days on a camping trip?  Where no electronics are allowed? You want to help with showers and changing maxi pads?  You want to be up all hours of the night so you are completely exhausted?  You want to worry about when the next meltdown will be or who she might hurt?  If you lived my life, you wouldn't want it.  If you knew what I know, you wouldn't be so happy and willing.  It sucks.  Autism sucks.  You have no idea how hard life is and how exhausted I am.  First, why don't you trade places with me for ONE day....24 hours and see how you like it...then we'll talk.

The Friend's Brain:  Oh this poor girl has no idea what my friend has been through!  She doesn't know how hard it would be to care for a girl with autism at that level for five days.  My friend is at her wit's end, and you make it sound like a fun vacation!

(deep breath) Ok...I get it now.

It was not my intention at all to make parenting a special needs child sound like a "walk in the park".  Some fellow "autism moms" might look at my life and think I've got it easy and couldn't  possibly relate.

The mom I talked to today knows I'm a parent of a soon to be 16 year old boy with autism.  She observed me with him over a two day church conference this summer.  She was trying to juggle being leader of her church's youth group with her daughter in tow.  Difficult?  Yeah, the woman deserves a medal!

Tristen, on the other hand, tends to blend in relatively well.


She didn't see how hard I fought in the past and how much I worked with him to get to the point where he would attend something like that. No one knows he's had chelation and HBOT.  No one knows about the piles of medical bills. Or the mountain of supplements before school and before bed.

He was good at sitting and being quiet...that's what 10 years of public school taught him!

She also didn't see the little tantrum he had when he had to change his shirt into the conference shirt all the kids got on the first day.  She may not have noticed  I had to drive him home to sleep in his own bed because adult women can't stay in the dorms with the teenage boys, disabled or otherwise, and drove back to the conference on the next day.  Or our packed lunches I hauled all over....or when we ate far from the crowd so the smell of the other food wouldn't be overwhelming. 

She probably noticed when he would get lost in his thoughts and start to talk out loud to himself, I would gently squeeze his knee or rub his back to bring him back to reality....that IS more noticeable.

In comparison, my life with autism is easy...I know that, and I don't take that for granted for one minute.

Let me explain:

Although my struggles are tame compared to most, that does not mean my comments were insincere.  I don't think "autism" is easy.  In fact, I know it's not.  I worked as a special education assistant for five years with a variety of ages and levels of abilities.  However, I can not deny that I loved them all.  Were they challenging?  Yes.  Was it FUN every minute?  No, of course not. 

I'm not a superhero or a saint. I COULD  DO THIS BECAUSE GOING TO A JOB FOR 8 HOURS ALLOWS ME TO LEAVE MY LIFE AT HOME AND FOCUS ON THE KIDS. And then I leave and go home to my kids and worry about all my "life stuff".

As an aide, I had one focus, and that was my student. I had infinite patience and consistency. I don't do as well as a mom. When you are playing the mom role, usually you are playing the role of wife, accountant, personal shopper, maid, taxi driver....etc etc. It is exhausting, to say the least, to be patient and positive when you are worried about "making life happen". I totally get it. I understand why you might look at me like I've got a third arm sticking out of my head. Autism is hard and it's all-consuming and it's not fair and sometimes it seems like their is no end in sight. I get it.

But here is what I love about kids on the spectrum:

I love to figure them out.  I love to see how their minds work.  I love to figure out their language.  I love to see what motivates them  AND finding that great thing that gives them the biggest smile, or makes their eyes dance.  I love it when they get flappy when they are happy!  They are such pure souls deep down inside and that's what I truly see. 

So who are these little darlings I speak of?  Maybe my experience has been the subgroup that are higher functioning?  Nope...I've seen a lot.  I've been bit, spit on, used as a kleenex, sneezed on, swore at, screamed at and licked.  That's just the mouth.  I've changed maxi pads, cleaned up poop smears, poopy pants, pee pants, and endured eye watering gas.  The job is not easy...I know it...but I can not deny I love these kids in spite of it all.

There are those moments, where something you've been working on for months finally clicks...
The excitement when they are happy to see you....
The calm moment when you've followed the routine and you see their bodies relax....
That grin when you've found their favorite thing....
Those times when your eyes meet and you know what the other is thinking...

I LIVE in those places...those GOOD makes all the hardships worthwhile. 

I'm sorry I sounded like an idiot. 
I'm sorry it sounded like I was simplifying your daily challenges.
I don't know exactly what it's like to be you and walk in your shoes 24/7, but I promise that I will be there to help you in anyway I can.

I  admire you for giving your all to your child.

I get it.

Do you get me?



Monday, January 6, 2014

Back to School Again

I have to say, 5 am came way too early this morning.  In fact, the dread ensued at 4 am when I gave my clock a look of disbelief and preceded to whine to myself for the next hour.  Seriously??  How can I be THIS tired!?!  I've had two full weeks off of school to catch up on my rest.  Ugh!
At 5:20, I begrudgingly dragged myself out of bed, only to feel the cold floor beneath my feet.  Ugh!  Cold, too?  I can't handle the freezing temps when I am this tired!

We made it to early morning Seminary by 6:00...Tristen having much less trouble than I was keeping awake and focused.  When we got back home, all I could think of was how extremely exhausted I felt.  I couldn't keep my eyes open and my whole body ached no matter how much I stretched.  I have to get my mind focused on school.  Stay off Facebook, I told myself.
I made breakfast and reminded the kids to do their chores....8:00 am came very quickly. 
We got together on the couch for our "morning meeting" during life skills class.  I told them about the next week and what needed to be done by the end of the semester on Friday. 

As we discussed the new sensory objects and activities, I could see their eyes sparkle and in that instant all the selfish thoughts of my own discomfort faded away.  I was reminded of how much I love teaching my kids and playing such a big part in their lives.  At ages 13 and 15, my boys like their alone-time as much as I do.  Most of our vacation was spent enjoying not having to go anywhere or be around anyone.  I really missed my kids!  I am SO glad to be back to school!