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 1, 2010

Welcome to my blog! 6 yr catch up...

Well well well...
Where to start?

I would first like to extend my support and love to those of you reading this who is taking care of an Autistic child or adult. This has been the toughest job I have ever had to do and it has taught me more about myself and others than I ever expected.

I will sum up the past 6 years so that we can move forward.
My son, Kannon was born in 2003. He was my first child and he was a big one! Weighing in at 9lbs 3 ounces I thought I had birthed a toddler. I had no complications with my pregnancy, the only stitch was that he had to be delivered via c-section due to his size. He was very healthy at birth and off we were into the land of parenthood...

I started noticing something was "off" with Kannon when he was about 20 months.
I was alarmed when I saw him around his peer group and realized he was way behind in many developmental areas.
Now, I must admit I was never a real "kid" person. I had nothing against them of course, but I never was that girl who always babysat or ran to play with kids when at a function. I stayed away and observed them if anything. This being said, had I been around children more growing up maybe I would have noticed Kannon's delays at an earlier age.

Kannon's language was way behind. He could not identify one animal, never mind sit long enough to play with a plastic animal. He just seemed to have no interest at all in playing with most toys, or with other kids. He seemed to always have his own agenda and do his own thing. It almost looked like he had ADHD, jumping from thing to thing without completion of any task.
He had problems in daycare. He could not follow the normal routine of the class. Circle time was impossible, and only after months in the same class would he go down for a short nap. We were lucky that the teachers were amazing people and tolerated Kannon's disruptive and odd behaviors.

Kannon then proceeded to go to different early intervention programs. Some through the school district and others through the state...
Had I known then what I do now I would have been much more proactive in getting him in ABA therapy as soon as possible.
ABA therapy, or Applied Behavioral Analysis is an intense program that I am still learning about, but overall has been very effective in helping kids with Autism. It helps their quirks, learning ability, and safety issues to name a few. Depending on your child's specific needs/goals the program is obviously created around them.
I have been lucky enough to get Kannon with CARD here in southern California.
Center for Autism and Related Disorders
You can research them online if you like....in my humble opinion they are amazing and they are helping to save Kannon's life day by day.

I have left out ALL of the hoops and hurdles that had to be crossed in order to get help for Kannon.
Unfortunately it is NOT easy to get help for these kiddos. It is time consuming, resource limited, and very draining. You really have to fight for everything.

This is part of my goal, to raise awareness of the need for resources and funding towards Autism. Not only research, but funding for schools, therapy, grants for families who can't afford therapy on their own. (believe me the cost of private therapy is ridiculous)

With the latest numbers on Autism it simply cannot be ignored anymore.
We need to educate ourselves, the public and then hopefully help and resources will follow.

Until then, finding support and accepting the situation in front of you is something that should be done. I mean emotionally processing everything and taking care of yourself as best as possible so that you can care for your child. WAY easier said than done....believe me.
It took me awhile to truly accept my situation. I did not embrace it right away. I was angry, and I felt sorry for myself. That is the truth. I hate admitting that, but it is all part of the process.

I always considered myself a good person. Loving, accepting, open minded.
I was never truly tested though until these past 4 years.
I lost my dad and both Grandparents, I had an Autistic son, I earned my degree, I got a divorce...all in a matter of 4 years.
I guess I was just bored before and wanted to get all the emotionally taxing things in my life dumped on me at once... yeah right.
It is life. It happens whether you are ready for it or not.

We all have our stories. I don't want sympathy. I only want to share my story so that maybe it could help anybody out there dealing with Autism.
It is hard, it is not pretty or glamorous.
But it can be beautiful.
I have had moments with Kannon that are better than those you see in movies.
Tears are an every day thing around my house, and not just the bad kind. Tears of love and ones that can only be shed when you have a child like this. You feel SO much for them.
You mourn them every day even though they are right there with you.
You laugh with them and watch their small moments of advancement with such pride that you could burst....even if it is as small as them putting their shirt on the right way for the first time at age 6. I think people in China probably heard my screams of joy when Kannon pooped in the potty for the first time, at the tender age of 5.5...and not a day too soon, the diapers weren't getting any bigger out there. I was looking into Adult diapers for him since he kept growing and not using the potty. Aaaah, just a distant memory now.

I know you know what I'm talking about.
This roller coaster of emotions...
We have to be able to laugh at things. We have to take time every day to enjoy our child even though they may not want to connect with you at all. We have to push and push...and push for every moment we get.
I have to remind myself to stop and observe Kannon. To not go into "robot" mode and just get by...even when I am so tired I could fall asleep standing up, I will take a moment to look at my beautiful boy. For this is all happening for a reason, one I may never understand or really want to understand....but this is my life.

The life of a parent with an Autistic child.

Thanks for reading today.
Take some time to stop and find the beauty. Find some peace, even if it is for one minute.

1 comment:

  1. Beautiful Mother, beautiful children ! My love and prayers... Leilani Witten