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

Thursday, March 18, 2010

What they don't tell you about Autism

Pretty much everything!
For those of you out there who don't know Autism, or are just learning about it...
Here are things that I have learned and wanted to share.
These can be great tools to identify Autism within a child, or how to become passionate towards children with Autism.

1. Repeat, Repeat, Repeat after me.
Kannon says the same thing over and over and over again...whether you respond or not.
It is like a broken record, and it can test your patience to the max. He will ask me 100 times a day for the same thing...and usually I have to repeat my answer at least 70 times to him, or else it would be 200 times he would ask.
Or if he is fixated on a certain movie he will repeat lines from it over and over again for no reason.

2. Physical "ticks"
These are the hand flapping, head hitting, tip toeing things.
Kannon flaps his hands a lot. When he's excited, when he's anxious, when it's dark out...
It gives him sensory input that is somehow necessary to him.
Almost like an itch that has to be itched...he has to do these physical ticks to get him through the day.
It can look strange, and it does attract attention, usually strange looks...
These physical ticks are usually one of the first things that indicate to other people something is "different" about my child.

3. Tantrums
These can range from mild to OBSCENE.
They can last 1 minute to 30 minutes.
They can come out of nowhere and be triggered by the smallest of things.
When out in public Kannon will be set off by certain things, noises, light conditions, visual scenes.
Sometimes he will just stop and stare or shut his eyes, cover his ears, move on...
Other times it is almost as though it physically hurts him to have seen or heard these things.
He reacts in a physical manner, and on comes the "tantrums".
These tantrums can be very loud and very embarrassing.
I have learned that I cannot control these.
I have learned that other people are going to look at Kannon and look at me like I am a bad mother for letting my child behave that way.
I have learned to say "oh well"...
It is all part of the deal.

4. Hoarding/Perseverations
Kannon specifically has both of these issues.
He LOVES to hoard things...aka collect, stockpile, stash...
It is like he is preparing for a natural disaster. He HAS to have a stash of goods.
He has bags and bags of things that he is very attached to for no reason.
He stuffs the bags full of random toys, trash, paper, etc.
Then at night, he has to have these bags right next to him...almost like a security blanket.
He panics without his "stuff".
He looks like a bag lady...it's very quirky.
I have found leaves, sticks, rocks in my bed after our walks. He collects things and leaves them as treasures around the house.
It gets interesting for sure :)

Perseverations are the WORST.
This is when the child almost obsesses about something or a specific object.
Kannon switches his obsessions about every month or so.
His perseverations consume him.
Right now it is his bike.
He talks about it all day, asks for it every 20 minutes and will not let up about it.
It absolutely tests every fiber in my body for patience.
However, I can't help but feel so bad for him. He really has no control over this.
He can't help that he loves this certain thing so much and his brain cannot switch it off.
The worst was when he was obsessed with belly buttons.
It made going out in public impossible, he wanted to raise up every ones shirts to see their belly buttons.

5. Texture aversions
A lot of these kiddos have aversions or sensitivity to textures.
ALL kinds of textures....food, fabrics, environment, etc.
Kannon specifically has food issues.
If the texture bothers him, he will spit it out even if it's chocolate.
He prefers to wear long sleeve shirts. He likes his arms to be covered. His therapists worked with him for months on being flexible about wearing short sleeves.
He also prefers no socks...we had to work on getting him to wear socks with his shoes.
Little things like this make every day life a little more difficult at times.

6. Autism has no "look"
This is what I get asked the most....or the most looks of confusion about.
On my website I specifically put a page up where I want people to see pictures of kids with Autism...because bottom line is, they don't look any different from any other kid.
This may sound weird, but people think Autistic kids will look a certain way, like a child with Down Syndrome does.
But they don't.
This is sometimes why Autism is difficult on the parent.
To the public eye your child looks normal yet is acting "different"...."crazy"...etc.
People are confused about what they are seeing.
They expect your child to look different since they act different.
Not the case.

7. Autism is a gift
It really is.
It is challenging, overwhelming, frustrating, and confusing.
But it is also magical, humorous, fascinating and full of learning opportunities both emotional and logical.
It shows me just how powerful the human mind/brain is.
Complex and mysterious.
It is something that is given to you as a parent...without choice or knowledge, like a gift.
It is something that you must accept and open with a happy heart.

I often say to myself that "I won the Autism lottery"...
Meaning, 1 out of 70 boys are diagnosed with Autism.
I got 1 of those 70...
I was somehow chosen by fate, or genetics, or something beyond this world...

How lucky I truly am :)


1 comment:

  1. I love this Kary. I think your kids won the mommy lottery cuz you're amazing...