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

Monday, February 21, 2011

The big day has come...

Kannon is starting school this week.
He will be a first grader...he will be going to school 5 days a week, 6 hours a day.

After all the fear and nerves subside, I can more accurately reflect on the event...but for now I just wanted to share such a big moment in our lives.
For one, I will be releasing that motherly hold I have on my baby boy and allowing others to have his best interest in mind for most of the day....whaaat?!
You see, Kannon has become almost like an extension of myself.
I have held on to him for dear life for so many years...out of love, out of fear, out of necessity.
Now I must let go...at least a little bit...as parents do we ever let go?

Part of me feels great about it all.
How can I grow and accept everything unless I am willing to "try"
I must be open minded and put my faith in Kannon...
I know he needs this.
I know he will benefit from this.

It is just hard.
It is the beginning of a big leap of faith for my soul.

I will miss him.
I will miss hanging out with him in the morning and going on our morning walks together.
I will miss knowing that he is happy and "safe" here with me...

I will need to relearn myself once again
I will not have Kannon to lean on, he will not be a reason to not get personal things done.
I will have some personal time...

And honestly, it scares me.
But I welcome the challenge...
We all need challenges to move forward.
It has been my "turn" for so long...
I have had to take the first step on Kannon's behalf for years...and I have loved every minute of it.

But more importantly here, Kannon will finally be able to show how strong he really is.
How smart he is.
How wonderfully amazing and irresistibly funny he is...maybe even make some friends.
I know he will succeed in his new environment.

I am excited for my little man.
I will not hide behind my fears for him...
It is his turn now.

His turn.


Tuesday, February 15, 2011

drum roll please...

I feel as if these should define so many of my life moments.
Drum roll please...mostly ending with a bad collaboration of clashing symbols...all off tune

Anyways... we are done, we have completed Kannon's IEP...( crowd hissing victory cries in the background...)
IEP behind us...at least for a year :) THEN, again we go...
And by that, I mean the tests...the percentages, the negotiations.
The absolute draining of a mothers source of energy, hope, and drive...granted we can refuel really freakin' fast :)
For those of you who don't know, an IEP stands for Individualized Education Program, which is mandated by the Individuals with Disabilities Education Act (IDEA)

Basically, if you have a child who has "special needs" aka special education status, then you MUST go through a series of evaluations and standardized testing by the school district in your area to determine a few things.
SO...they test and they test and they determine first of all in their eyes if your child is even eligible for services....aka do they have a "disability" of some sort.
(mind you, I am NO legal expert nor do I care to go into great detail how this all technically works...just trying to get the basic point across before you fall asleep...)

So, YES my son qualifies for services, and YES he falls onto ALL the areas that are "typically" Autistic/Autism relevant....blah, blah, blah...

Here I am 11 o clock at night staring at the 2" pile of papers in front of me.
After all the whirlwind of testing and meetings and talking and thinking....
Here they are.
Honestly, I have been crying over these damn reports for the past hour, but whatever...please NO sympathy here...part of the deal.

So, the IEP...a legally binding document which could drive the future education of my son...
AND a whole lot of test results from the school districts team of professionals.

LOVE these damn things.
I love seeing how severely delayed my son is.
How he is in the third percentile for his age group in Pattern Recognition, and how he shows a "lack of understanding" and" exposure to general problem solving opportunities".

Here you go, here's a taste of what parents get to read about their babies with Autism...

"According to assessment results, Kannon is functioning at Piaget's Preoperational/Preconceptual Thought Stage, individuals are able to attach labels to objects and to use language to mediate behavior. They engage in associative reasoning and have only a rudimentary understanding of cause and effect relationships."

"Kannon is able to engage in an activity with a peer for an average of 3-5 minutes with 1-2 prompts form an adult in 72% of opportunities"

"Kannon's overall level of achievement is very low"

"Kannon is manding 49 times per hour and targeting 3 manding frames"

"Kannon was unable to perform this task in the required environment"

THIS is what defines our children to the public.
This is what we, as parents get as feedback as to "how our child is doing..."
Uh huh.
Numbers, testing, observation...constant tracking of behaviors and percentages...

What about now.
What about me sitting here alone with these reports seeing how my 7 year old is functioning at a 4 year old level...and in some areas a 3 year old.
How "they" feel he is "unable" to do SO many things...granted it is their job and it is not personal...but this is not about that.

What about the sweet boy that makes sure I am happy all the time..."mamma you happy?!"
What about the boy who doesn't push kids on the playground and is always smiling...
What about the boy who in my humble opinion lights up a room with his sheer joy for life.
What about the boy who has fought so hard for EVERY SINGLE WORD that comes out of his little mouth...
Again, nothing personal...but what in life isn't?

Where is he in all this paperwork?
I can't find him.
Or maybe I just don't want to find him in all of this.

I am writing this mainly because people need to know the dark times in all of this.
The RAW emotion and truth that comes along with it all.
The reality that one day I can be so excited for Kannon that he recognized the number 5, then the next moment be shot down by an institution that tests him in a way that his brain cannot comprehend...yet if presented in a way his brain understands he can get it.
Make sense??
To some mothers I know I am preaching to the choir here...

And I don't care how strong, positive, hopeful your soul is...
These moments will never be easy.
The constant fighting.
The constant fight for a place in this world for your child...for yourself.
The ever present hope in some sort of system that will work for you and your child's benefit.

So to wrap it all up...and I may be rambling on here...
After making my last phone call for the day, my last inquiry on Kannon's behalf, my last paper read...
I go to pick up my baby girl at school...which is such a joyful time for me....a time of "normalcy" if that is even a word or concept.

I am driving down my street and there he is...our neighbor who is in his 40's, who also has Autism.
In my past posts I have mentioned him.
He is attempting to take the trash cans out to the curb with his fathers assistance.
His pants are down below his butt, hanes showing, and no shoes on.
His backpack is half on and half on his head...and he is dragging the trash can on it's side to the curb.
Most people would either laugh...make fun of him...or just ignore it out of being uncomfortable with the sight.

I slowed down, saw this beautiful human being who with his salt and pepper hair resembled an English professor more than a "special person" with his pants sagging, backpack covering his face....and I smiled at him, a warm teary eyed smile.

For this could be Kannon.
It is SO many people out there.
They too have piles and piles of reports on them too....

But I know behind it all there is someone who loves them more than anything.
And, there also must be a society who accepts them.
Because for **ck sake it takes a second to smile, but SO much more energy to judge and frown.
There has to be an environment for these kids/adults outside of the testing and judgement.
There has to be a human factor involved here...and not just from the parents...and not just for Autism.
For everyone.

Every soul deserves to be loved just as it is...

This is what we must hold true.
I have to believe it.
I must believe it.

Human nature is all about perspective, not numbers and percentages.
Change your perspective if in any way it is negative...

Plant the seed, and it will grow...


Thursday, February 3, 2011

Letter to my son...

Dear Kannon,

I am so proud of you.
I have watched you grow into an amazing little man, thank you for choosing this path in your life so that we could do this together.
You have changed my life and my heart forever.

I remember when you started your ABA therapy.
You were 5 years old, and you had a vocabulary of about 10 words..."juice...no...park...car...dog..."
If you needed anything you would either attempt to get it yourself or physically grab me and drag me to the item you wanted.
You couldn't put your own shoes on, you couldn't get dressed by yourself, and you were still in diapers.
Look at you now...
You can talk using 4-5 words in a sentence...."Mamma, I want food please"..."Can we go to park"..."Goodnite mamma"...
I love that you can finally call me something..."mamma"
I also love that you can use the potty by yourself now :) What an accomplishment for you, as you struggled for a long time with that one...no more diapers!

I remember how scary and difficult it was for you to have strange people come into our home and demand things of you...all of course for your benefit, but you had no idea what their intentions were.
They wanted you to sit down for 15 minutes at a time, which was very hard for you to sit at all...and after sitting you down they would work you for 2-3 hours at a time, for 4-7 hours a day, 5 days a week.
It was like a job...you were a 5 year old with a job...
You had the most difficult and important job...fighting for your life, fighting to get through to yourself.

I remember how often you would cry yourself to sleep at night, and sometimes not sleep at all due to the stresses of your everyday routine.
You simply could not process what in the hell was going on in your own mind...why you could not talk, why everything felt so fuzzy and out of control...at least that is my interpretation of it all...
I remember laying next to you trying to calm you down while you would kick and cry and hit me out of frustration. I hated seeing you so upset...I hated seeing the bite marks on your arm and the bruises everywhere.
You would do this every single night...you would only sleep 2 hours or so, sometimes not at all...and you would get up and work all day the next day.
I know this lasted for about 7 months, and that it felt like our home was a prison...no sleep, no happiness, just getting by day by day...just work, work, work.
What you have to know by now though is that it wasn't your fault.

You have Autism.

So this means you have to work harder than most people do for the simple things.
You have to fight every day, just to get through to yourself.
You had to make that transition into the "rest of your life" work...

Look at you now baby boy...
These "strangers" are now your friends.
They love you and you them.
You can sit down now for 15, even 20 minutes and work peacefully.
You still have to do it every day for 4-7 hours a day, but now you laugh more, your focus is there, you have an intention within you.
Through working with your therapists I have seen the most amazing creative person come out of you...your drawings, your sense of space and proportion are simply fabulous.
You can express yourself now through different mediums...it's so great to see all of this happening for you.
You sleep soundly at night now (for the most part :) )
You aren't restless. You aren't angry.
You are happy.
The bite marks are gone...so are the bruises.
Your tears are now sweat because of how much running around and playing that you do.
You are getting through to yourself slowly...you really are.

You are able to enjoy the little things that used to burden you.
You can tell me that you are mad or sad and I can cry with you now...not for you.
I can look into those soulful eyes of yours and see some clarity.
I can see that you are looking back at me.
You can wipe my tears away now...instead of me always having to wipe yours.

You have a vocabulary now that is unbelievable...
I would guess you know and can label about 150 things, maybe more :)
You can look at a tree and identify what it is.
You can tell me that the balloon is blue, that the dog is brown, and that your name is Kannon.
You can even count to 20, and you know more colors than I do...how about that :)

I am so proud of you.
You are really doing it baby...you are breaking through
You are letting others help you...but what you need to know is this:

You are helping everyone around you in ways you may not know...
You are changing our hearts...our minds...our perspectives on life.
You have shown us that things are not always what they may seem.
You have shown us just how beautiful a soul is.
You have shown what hard work can do...hard life work.

Complexity, humor, tenderness, consideration, love, hope and strength.

This is you...in my eyes.
In my eyes, you are growing up to be quite the amazing human being...the best I have ever met.

I am so proud of you.
Someday when you can read this, I hope you can look back and remember your journey with a smile and with pride.
I hope that simply someday you can read...that you and I can talk...that all the times I have talked to you late at night after our long days together you can tell me you understood exactly what I was saying...that all our tears were worth it.

Lastly, I hope that even when I am not on this earth anymore you will know with every part of you how amazing you are...that everything you are today is because of you and your hard work, and believe me you worked so hard for it.

AND...how you made my life better...not just better Kannon, you truly MADE my life.

Love always :)

your mamma