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

Tuesday, October 6, 2015

Happy Birthday Kalena

A mothers wish...

I wish that when I physically leave this earth my children will love each other as much as I loved them while I was here.

I know this blog is based on my son who has Autism. All the adventures we have had...all that is still to come. I share in hopes of those who read my stories will try to open their minds and hearts to those who are different than they are. I hope people realize the beauty that lies beneath the surface and try to experience love for others through the eyes of a mother who has had to redefine her definition of motherhood, love, and human understanding.

Today I write for my daughter. The "other" child.
The one who has always had to stand in the wings while her brother constantly took center stage.
Not because he was better...simply because he had to.

She always waited. She always knew inherently that her brothers needs came before hers.
Beautifully without complaint. She just accepted her place in our family and always had a smile on her face...and in her soul.
This is love.

This is Kannon's sister.

Not today though. Today, this is Kalena.

Yes, she has a name. A beautiful one.

If I had to use cliches, which are amazingly effective, I would use these for Kalena:

- The wind beneath my wings...
- The foundation to my castle...
- The silent partner...
- My sunshine...my only sunshine...you make me happy when skies are grey...

She is simply the cloud that holds our family skies together. Without her existence this family would not work. It would not be balanced, interesting, or a counter point to which I refer to every single day.

Today is her Birthday.
What a gift to be celebrated.

So in her honor I had to share her glory, if only for her to read when she is older.
So she knows how precious she has been to me over the years. So she knows that without her being by my side during these tough years I would not have had the strength to claw my way out of the holes Autism buried me in at times. She really has been my best friend in everything I have been through.
I am blessed to call her my daughter.

I was given the best of both worlds.
One with chaos, confusion, unknown territories and fear...to help my soul grow.
The other with solid ground, blue skies, clear air and hope...to remind me of the simplicity life can hold.
They have brought balance to my existence and to one another.

But the best gift of all...

I know that when I leave this earth they will have each other.

Their love will carry them through, no matter what the time will be.

Love gets love.
Love gives love.

At the end of the day we must honor the balance of those in our lives. We must accept that we have no control of others lives and we must find the beauty in our own lives.

It's not all rainbows and lollipops...
But as I have been taught through my children, we can make our own castles, question every situation, and make good choices.
Friends are a choice, but family is given to you for a reason.
Life lessons are powerful, painful, humbling, and even laughable. However, they are lessons to be learned from, to grow from.
Ironically, my children have taught me more than anyone in my life. They have showed me an innocence and clarity that was beyond my capability. I am eternally grateful.

Happy Birthday Kalena.

You are truly a gift worth celebrating.


Wednesday, April 1, 2015

His shining moment...

The main thing about Autism that I have learned thus far is that, you just never know.

You never know "why" this happened to your child in the first place, or to yourself for that selfish matter.

Why there are so many different therapies for Autism, what they actually do, and if they are effective.
Sometimes it doesn't matter because to actually receive these services is an act of god.
You have to understand the paperwork, the process, the loopholes, the laws, and then have the time to be proactive about accessing all of these.

I want to share a glimpse into my boys journey, show you his beautiful soul, and how he decided to know who he is in all of this.

I cannot imagine being a part of this world without the gift of language. Language is different than communicating, and Autism alone taught me that. To have the ability to speak your mind when you want and how you want is invaluable...and at other times it is taken for granted.
However, to be able to communicate with others is on a whole different level. Sometimes you don't need words. Sometimes you just need to care enough to have the patience to listen in other ways. People are always singing some song in their life, it takes true love to be able to hear that song without words.
Kannon never had the luxury of speaking his mind, needs, or joys. He never chose to get frustrated over that though. He always found a way to find peace with himself and others.

Here he is a video of him singing "A Dream Is A Wish Your Heart Makes" from Cinderella.

The words could not be more perfect for his soul. This boy who fought every day for words, for the gift of communicating, and there he was singing his heart out to a room full of strangers. This was his choice in how he knew who he was in his world. How he wanted to be seen, and heard.

Even if you don't have the words, your heart will sing a tune that others will hear if they try. Kannon once told me years ago after a very hard day of living with Autism, "Momma it's o.k you don't know my words...my heart loves your heart, they will hold hands forever"...

Oh Kannon, if only people knew how hard you worked for this moment they would just melt. You are a fighter, a survivor, and my hero. Thank you for showing everyone your hearts tune.

Autism is not ugly, it's very much misunderstood by society.
April is Autism Awareness month, please if even for a second know that people out there living with Autism fight so hard for everyday life. Despite this, they still get bullied, called names, and are left out of most social interactions...

If you would please pass the word about compassion.
Pass the word about Truth.

Autism needs all of this, and you just never know whose world you may make brighter by trying.


Thursday, January 22, 2015

A letter to Kannon on his IEP day.

" I hope you dance..."

I love this saying...and the song. It's beyond beautiful the message it sends.
I have to write something today for Kannon so that someday when he's older he can read this and know how loved, how cherished he is. I have to let him know because days like today happen, they happen at least once a year and they will continue to happen without fail.
Why? What?
Why, because he has Autism.
What, today is his annual IEP meeting with the school district.

IEP: Short for Individualized Education Program, an IEP is the legal document that defines a child's special education program. An IEP includes the disability under which the child qualifies for Special Education Services (also known as his classification), the services the team has determined the school will provide, his yearly goals and objectives and any accommodations that must be made to assist his learning.

First, I have to say I have never loved these meetings. They are extremely literal. They are painful for the parent(s), and they require a butt load of paperwork...who doesn't love that?
Second, the round table atmosphere should lend to collaborative efforts by all parties in the interest of your child, but sometimes that doesn't happen.
Lastly, why I have to write a letter to Kannon today is because I want him to understand how none of these papers define him. None of these numbers or goals really matter in the bigger scheme of life.
To be defined by piles of papers, tests, goals, assessments, and graphs is nothing anyone would want.

I want Kannon to know how loved he is.
I want him to throw all these papers away someday when I am gone...
I want him to be free of all this.
I want him to dance.

I need him to remember how last month at Jillian's wedding how she put everything on hold to find him, bring him up to the cake table while she cut her cake and how she gave Kannon the second piece of cake...right after her husband. I need you to know how many people came up to me during the reception to tell me how much they've heard about you, how special you are to Jillian, and how wonderful it was to finally meet you.
You are so loved buddy.

I want him to know that every time he repeated his fairy tales to me, to his therapists, that I know he was trying to say so much more but couldn't. I know you were trying to express love, happiness, and find any way you could to relate to other humans.
You just wanted to connect with others.

I want you to know how many people's lives you have touched. You may never know it or vocally be able to express your knowledge of the gift you have, but you need to know how magical you are.
You make everyone happy, you make people appreciate the simple things in life, you make people better.
I have had a handful of people tell me those exact words. "Kannon has made me better..."

What a gift you are buddy.
Know this.
Throw away all those papers, tests, evaluations, goals...you don't need any of them.

None of those matter.
They never have.
They were a technicality that had to be done to get you help...that's it.

You are more than all of it.
I love you and your sister so much.
I only did what I thought was best every day.
Unfortunately that included meetings, paperwork, and evaluations.

I just wanted you to know that at the end of the day you always danced, in fact you skipped...literally everywhere you would skip. You were always smiling and you were happy.

You made me better buddy. You made those around you better, and if not better you always made people smile. Your efforts in life are astounding. No one knows better than me how hard you have had to fight every single day for the simple things. Not only did you fight, but you managed to stay happy and dance through it all.

Don't ever forget that.
I hope you never stop dancing...even on days like today.

Happy IEP day.