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, 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...



  1. I really enjoyed reading your thoughts about the syster. I work as a BII for an autistic student. Even though she isn't my child, I understand where you're coming from about how the system treats children.

  2. I'm midway through a project - a mini-scrapbook that is handwritten with many of the notes from Noah's assessments. From the moment he was dx'd. It blows me away when I read that and I see just how far he's come. Same for Kannon. This one stop in assessmentland is but one quick blink, and someday soon, you'll look back and smile at where he is now. I promise.

  3. Oh, Kary! I so hear ya on this one!!! We have just gone through an evalution process and IEP update and testing and forms and meetings!!! I just did a blog post recently myself....it's so darn HARD sometimes!((((HUGS to you!))))
    @ redheadmommma: love "assessmentland" ;-) and your idea of the scrabook! It is hard to see the "forest through the trees" many times! We shall all hang in there together...sometimes that is all we can do...until it is time to do MORE...again!