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 2, 2010

The difference between realizing something was "different" with Kannon and when he was officially diagnosed with Autism

As all first time parents would probably agree you are filled with so many new emotions when your little one arrives.
First there is absolute bliss, a love you never knew existed in your heart, and then of course the fabulous changes to your sleep and daily schedule...that hits the hardest in my opinion.
Anyways, your world is turned around and you are officially a "new" person.
You have to be the grown up now. No more playing in the sandbox...it is go time.

Depending on your family/friend support system you have in place in makes all the difference in the world. Had I had a better support system around me I know I would have been much happier the early years. If you can, take advantage of people when they offer help. Let them watch the kid for an hour so you can sleep, or get out of the house...it really will help.
Bottom line is I believe 100% in a solid support system to be in place. It takes a village to raise a child, and I can guarantee you that everyone will benefit in the long run.

All that being said, as a first time mom I was overwhelmed. I did not have a solid support system and I was very naive.
SO, when I started to notice that Kannon was not as far along as other kids I didn't know what to do. I first went to his doctor and she didn't seem worried. I talked to my family and most people said that he probably was just a little slow and that boys to tend to develop slower than girls...
"He will just start talking in full sentences one day" was what I would hear from A LOT of people.
So, naturally I believed it. I wanted to believe it more than anything. I wanted to believe that Kannon was just "slow" and that any day now he would start talking to me about the weather, or his toys, or how much he loved me...
Weeks turned into months, and eventually into years...no talking.
Obviously by the time Kannon was 4, I was beside myself and doing what I thought was best for him with the resources available to me. Basically, speech therapy and special education classes through the public school system.
What baffles me is that even at this point his pediatrician still never mentioned the word Autism to me. She thought he had a speech disorder call Apraxia. I was still in my blissful mindset that Kannon was going to start talking to me any day now...

I know that what kept me int his mindset was Hope. I really think that Hope and Tease should get married and have kids....because you can't have one without the other.
I had so much Hope for Kannon and for his ability to "get better" overnight, and when he would show small advances in either his behavior or language it was like a Tease. It tickles at your heart and messes with your head. You have a physical reaction to it, just like you would any kind of Tease. Which in turn, leads you right back to Hope. Around and around I went...

Due to legal reasons, we needed to get Kannon evaluated by a child Psychologist. We not only had to research ones that dealt specifically with Autism Disorders, but ones that were credible and who knew how to work with and around certain bureaucratic systems...
Also, we had to pay out of our own pocket for his services.
FYI, if you ever need to have your child evaluated or assessed by a licensed, respected individual expect to pay around $3500-$5500, depending on the amount of hours and time that needs to go into your child's case.
You will find out that an assessment by a professional is absolutely necessary...it can be your golden ticket to a lot of services. A lot of services require you to have a clinical diagnosis of your child's condition, again it does not come cheap though.

We were very fortunate to find one of the best Child NeuroPsychologists in California. He was very passionate about his work, and had been doing it for 20+ years, before Autism was the epidemic it is today. Obviously Kannon was in good hands.
He ran his tests, did his observations in our home and at Kannon's clinics, and about 3 weeks later we had a final report in our hands.
(I want to note that a 3week turn around for these type of assessments is almost unheard of, usually it takes anywhere from 5-7 weeks)

So, there I sat in my driveway with a pile of papers in my hand about an inch thick.
There were numbers and stats and charts all through it, and as I skimmed through it I finally got to where my head and heart was dreading for the past 5 years...Kannon's official diagnosis.

When I actually saw the word Autism next to Kannon's name my world fell apart.
This may sound so stupid considering I had been living with this child and knew something was wrong with him...but Hope kept my heart from believing it was Autism.
Hope kept me from wanting to believe it was Autism...
So, I cried for about an hour. I called my sister and cried and cried and cried...

I had never felt more alone, more scared or overwhelmed than I did that very moment.
I was heartbroken. I really had convinced myself that Kannon was going to start talking to me any day now. That he would run up with open arms tell me he loved me and that he was just silent all those years trying to perfect his language...this is what Hope can do to you.

The thing is though, I love Hope. I love the feeling it gives me.
Sometimes it is all I have when I lay down at night...so I will not give up on Hope.
Like I said, it can be a Tease at times...but I will always keep Hope in my heart.

Who knows...maybe someday Kannon will just start talking to me.
Maybe he has just been taking everything in so that when he and I start talking he can teach me all about the world around him....

I can't wait :)

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