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

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.

Friday, December 26, 2014

A tribute to 2014. A tribute to Void.

Containing no matter; empty. 
A vacuum.
To leave; vacate.

We all have voids in our lives. 

In our minds, our hearts, our perception of who we are. I'm clearly no expert, but what I have learned through trial and error over the years is that this is what tests our human spirit for growth.
To be very raw, here is the truth:

Year 2006: My marriage had started to fall apart. My son was showing signs of abnormal behaviors, my father was dying a slow death that had already started a few years prior.

Year 2007: My father died. I separated from my husband, my son was diagnosed with a brain disorder...still not clear what, but it was an initial diagnosis of what was to come. I moved out of my home and took my kids with me. No money. No clue. No family nearby to help.
Year 2008: My Grandmother died. My Grandfather died. My divorce was pending. My son was falling deeper into whatever it was that was going on in his brain. I was having a nervous breakdown. Legitimately lost my sense of who I was, what I needed, and why I was alive. 

I never hurt so much as I did after all these things happened. It was literally like a snowball effect of one thing after another...after another. It was an absolute mind fuck and life changer. 

When we "grow up" we rely so much on our past to be lessons of who to be, how to act. We look to those who raised us as a guide, as our lights to our dark times in life. I was clearly lost. I had no path. I had no light. Even though I was a mother, it didn't matter. I was still in my mind grieving. I started allowing the voids to consume me.
I lost all trust in me. I let go of any sense of reality and created my own. Using alcohol, no sleep, and emotional torture, I wrecked through the next 2 years of my life. It was ugly. Very, very ugly. 
I had no family physically here to rely on. I had 2 kids who were depending on me. I had no job, no time, and no desire to make myself better. 
I lied to those I loved. I believed my own lies to fill those voids. I created more pain to fill the pain I was already in. For whatever sadistic reason, pain felt good. It was the only thing I went back to every single day. More pain to fill the voids of the pain I was already in.

Now to the sane person this sounds ridiculous. It sounds pathetic, stupid, and self righteous. 

And, it was.

I can say that now without shame. Without regret. Without feeling ridiculous. 

I, the normally calm, rational, and quiet person saw the other side of my reality. 
I saw the potential of the human spirit and mind when it is pushed beyond it's own perceived abilities.

I only saw, felt, and acknowledged the voids.

I was empty.
Every day literally was a vacuum sucking the life and light out of me and instead of seeing that reality, I craved the pain of it. I wanted to feel emptier than I already was. 

I seek no pity, or validation. I only want to share my ugly truths in hopes it can help others who may be going through their own private pain and voids. If we cannot share truths like these, there will never be human growth or connection. I believe that with every fiber of me.

I now know that without truth, no matter how uncomfortable or non flattering it is will free your ability to move forward. You will push through anything in life, as long as you are honest with yourself and those you love.

I hope to share my experience with this so that others may choose a different path...and if they don't, I want them to know they aren't crazy, or weird for feeling like this.
The struggles may be different, but pain is pain. Void is Void. 
It all affects our daily existence and future. 

I, thank god made it out. I am a work in progress and this is one of the reasons I write...god knows if anyone actually reads any of this, but it doesn't matter. It is part of my journey and I hope someday my kids will read this and laugh, cry, cringe, etc...but at least they will know I was just a person. Not a super hero. Not made of steel. I bend, I break, and I found myself to be resilient. I was just doing my best every single day. I want them to know that their love and existence saved me. Some days were clear and much easier than others, but I kept pushing forward because of them.
I can honestly say today I am one of the luckiest gals around. I love my friends, family, and life SO much. It's not a  perfect life...but it is one built on a real foundation. A foundation of truths, lessons and perception that can only be gained through void.
Yes there were bridges that had to be rebuilt, and apologies that had to be made, personal acceptance to evolve, but eventually it all happened.
I have the best friends. The best sister. The best mom. The best KyKy. The best kids, all of them are my life savers.

I may not have my dad, or my grandparents or the son I thought I would. I may not have as much money as I may like. I may have a shit load of "good god whys"...BUT I know inherently that I am exactly where I need to be today. I went through what I did for a reason. I have the people in my life today for a reason. I have 2 beautiful kids that will grow up to be whatever it is they were destined to be. I have no control over that.

Once I learned that I have no control, but I do have choice, life became very clear and very beautiful...

The lessons came flowing and my heart took a deep breath. 

I may never see my son get married or have a family. I may never have a daughter that doesn't worry about everything. I may never find my happily ever after.

And that is o.k. Today, I can say that with a smile on my face and contentment in my heart. I don't panic when my reality is in my way. It is not a perceived reality anymore either, but one that is allowing me to learn, move forward, and make better choices.

What I do know is that there are monsters in life, there are castles, and there are journeys to be taken.

I wish that you take them all with an open heart. 

You will learn.
You will fill those voids in your heart and mind.

Voids can be a blessing. A necessary. A gift. 

I wish everyone a blessed 2015.

Make it awesome, and I hope if you do have any voids you choose to fill them with love...with light...with friends and family.
No matter how big or small your family or circle of friends is, the ones who are still standing by your side after the storm are the ones who matter. They will be your light during the dark times.

P.S. The world lost a beautiful light and life this year. Leslie was one of a kind. A truly happy soul that had life figured out. She already knew all these life lessons without doubt. I will honor you every day with sunshine and reminding myself to "Be Happy".

Love you Mel. Fill your voids with love...and some wine and cheese...she would want it that way :)