Hope is the thing with feathers that perches in the soul
And sings the tune without the words, and never stops at all
And sweetest is the gale is heard; and sore must be the storm
That could abash the little bird
That kept so many warm...
~Emily Dickinson

Friday, November 18, 2011

hello autism, it's not that great to see you today.

There are just some days that Autism takes over. Period.
No warnings, no easing into it....it just kind of smacks you in the face.

Today was a very important day for my daughter, Kalena.
Every year her Montessori school has a Thanksgiving feast where all the families cook a dish, the kids get dressed up in their paper bag pilgrim costumes, sing some cute Turkey day songs, and we all sit down and eat.
Kalena was beside herself that this year Kannon AND I were going to come with her.
She was bouncing around all morning so excited for her friends to meet Kannon and for mommy to hang out with her to see her sing and sit and eat with her...
As I have mentioned in earlier posts, I have few opportunities to spend quality one on one time with Kalena, so any chance I get I jump at it and make the most of it.

So off we went, Kalena talking the whole car ride about how she "can't wait for everyone to see her brother and mommy"
Then...for whatever reason, the minute we got to her school Kannon transformed into "Autism man"

Hands flapping out of control, his mouth running a million miles a minute spatting off any word his brain could conjure up, and the pacing around tables while letting out loud grunts every now and then that tend to frighten people and bring a shit ton of attention his way.
It was awful to watch his body completely go out of control like this.
His brain was clearly overcome by Autism and there was not a damn thing he or I could do about it...
He was gone.

The normally sweet, easy re directed boy was spinning around and around yelling and flapping...

Uggghhh I HATE moments like this.
Not just because it is like watching your child become possessed, but also because you don't know who the hell to get mad at...or if you should get mad at all.
Clearly, as I have learned over the years of this there is no one that you can yell at enough for you to feel better about what is happening...no amount of anger, screaming or crying will make it better...or go away.
You just have to "ride" it out and allow the behaviors to run their course.

But here is what made today the most painful for my heart.

It was having to say goodbye to my little girl after only being there with her at her school for 30 minutes.
Her brother was unable to handle the environment there and I was unable to juggle trying to manage his behaviors while attempting to spend quality time with her...
I got her a plate of food while having to pull Kannon's head out of the food because he had to smell everything and he even managed to stick his finger in a few of the dishes...simply lovely.

I set her plate down in front of her, her back to me I bent down and whispered in her ear that mommy and Kannon have to go because Kannon is having a really hard time today...
I wanted to hug her so badly, but since one of my hands had a kung fu grip on Kannon it was physically impossible to do so.

I heard her quietly say "ok mommy, bye"

As I walked out I looked back at her after scolding Kannon for his last attempt at sticking his finger in the mashed potatoes and there I saw why it is I HATE Autism today.

Kalena had her little head down with tears streaming down her face...quietly crying in her food while all her classmates around her chatted, laughed and ate their food with their mommies and daddies.
There she was alone, crying, no one sharing this event with her...
I wanted more than anything to run over to her, and just cry with her.

Instead, as Kannon began to scream at the top of his lungs because he "DOESN'T WANT ICKY FOOD" I had to calmly walk out of the school and into the parking lot with my head up and a calm demeanor.

I put Kannon in his car seat as he was still yelling about the icky food and when I got into my seat I just started to cry...

I hated that today was ruined because of Autism.

I hated that I couldn't get it "under control" like I normally can when in social settings...

Most of all I hate that my little girl cannot completely understand all of this.
Why mommy is always tired, why I am always running around doing things, always going through stacks of papers and rarely having the time to just sit down with her and watch an entire movie...

Why her brother sometimes acts the way he does...
Why he was hitting and biting her this morning for no reason...
Why he can't just have a quiet mouth sometimes...

WHY???

So after taking many deep breaths and calming my emotions we drove home.
Back to his safe place.
Back to his kitchen that has "yummy food"
Back to his paper, crayons, stuffed giraffe, backpacks, and everything else that brings him peace...

And after about an hour of being back home Autism left us...
It went back into hiding, deep down into Kannon's brain where it likes to stay...
No more yelling, no more hand flapping, his body was calm again.
He was able to listen, follow directions and sit still at the table and draw.

This is when I want to rip Autism out of his head and punch it in the face for what it just did.

For what it did to Kannon...and for what it did to Kalena on her very important day that she was so looking forward to.

As lovely of an analogy that may be, I know in my heart it wouldn't make any difference if I did.

Autism is resilient like that.

I just hope Kalena's heart can continue to forgive it.
I hope Kannon's body can continue to handle what it does to it.


But mostly I hope that someday I can punch Autism in the face...gut...whatever...
Just as long as it feels how much it can hurt...how much something unexpected can knock you on your ass and not feel so good...

I will also thank Autism.

It's a love / hate relationship.

For now at least...and especially after days like today.

peace :)

3 comments:

  1. I have my boxing gloves ready...Let's beat the hell out of Autism on days like this...Hugs the tightest to you...

    ReplyDelete
  2. OMG! I felt like this yesterday & cried. I am ready to help beat the hell out of it too!!

    ReplyDelete