The Thing about Aaron #autism by @barnestormjohn

The Thing about Aaron

by John Barnes

Aaron is seven.

He is my boy.

They can’t decide just what else he is though.perhaps something

from that Awesome and terrible Space

of Distinctly other.

He is small for his age.

We don’t mind that.

It’s the food issues that concern us much more.

Prone to allergies and respiratory ailments

since his pneumonia before he was two

Emotional Intensity in spades, as they say.

He just really can’t stand when things aren’t right.

His meltdowns,

epic in scale

are sadly, a daily occurrence.

It’s not a tantrum.

It’s watching his heart breaking.

Over and over

again and again.

He’s a bright guy,

my boy.

Reads at well over double his grade level.

His vocabulary is tremendous.

He builds Great

and Wondrous

things.

He sees Everything.

But cannot readily understand

the feelings of others.

He loves to play outside.

Outside is where He wants to be

most.

Yesterday

he paused ahead of me on the walk.

“I’m afraid of nature”

he said.

Further inquiries divulged

it was the birds

that caused him fear.

“They’re just too loud”.

You should have seen, should have heard.

Last Fourth of July a rocket went off

just way too close to his ears.

Bath time is a major ordeal

Every Time.

It takes two adults to wash his hair.

His screaming and squealing are deafening

bouncing off the tiles of the tub.

He understands well how things should work.

But when an impulse takes him,

he’s gone.

All semblance of common sense falls away.

all civilized pretenses shed.

He’s a runner, you see, when you open the door.

Pretty much any door.

This can be a problem.

Thank God he doesn’t have much stamina

so he stops to hide

pretty soon.

But, he is what he is, this boy of mine.

And I love him, ah yes, I do.

In many ways similar, He and I.

Both odd little units, it seems.

And yet, his mind works ways

I can’t possibly understand.

He has Mighty and Vivid Dreams, my boy,

and he tells me about them sometimes.

“There are stories – in my eyes”.

“They get there

when I sleep.

And sometimes

when I’m not.”

I appreciate this poem that is so thoughtfully penned by father and writer John Barnes. John Barnes lives in Portland Oregon with his wife and their autistic son. Please enjoy more of John’s writing at his blog.

The Edge (National Autism Awareness Month) #Autism

Just starting off – with autism

She’s a young mom just starting off. Her first child was a girl her second a little boy.

“Why all the tests? We never had to do these for my daughter at this age.”

” We are trying to determine if…”

” Determine if ? What- I want to know. What is wrong??”

How many hallways have heard the echoes of these words, the panic, the uncertainty.The – why me???

What can we do for this young mom? Should we just tell her ” toughen up your child has autism?”  Sure if you want to push her over the edge.

I recently was told a sad story.  My friend has autistic twins.  Yes –  she has her hands full and most days are “over the top” for her. She is part of a wonderful support group for autistic families. One of the young moms was at the end of her ability to cope. Obviously the group didn’t know how close to the end. One day after her child’s therapy, the mom hung herself on the therapy equipment. Do you think this mom was making a statement?

I heard her cry and I didn’t even know her

 “I hate this!!! ”   “I can’t do this anymore!!!!!!”

At the End

Have you ever been at the end of yourself??? I have – but I never had a child who needed me every minute of the day for what seemed like forever. I never had someone tell me that one child would be a full-time job just to work with therapists, the teachers, the experts… I never had to juggle an autistic child with the lives of my other children who have needs too!

I worked for years in a group home for children. These children were there because the families could not take care of a child with special needs and take care of their other family members. They all agreed it was just too hard. Parents who are each day making the choice to raise their autistic children are heroes.

Autism Awareness

This is National Autism Awareness Month. Please look for ways to help families in your community. There are so many ways you can help. Be part of the support system that a family needs so that they can get through this autism thing. Also remeber at the end of the month people are still dealing with autism every day of their lives.

*****

Thank you to the following for the beautiful photographs:

JTravism

Meg Yarsh

My Friend Madison

I have a friend his name is Madison. He is a seven year old boy. He has blond hair and blue eyes. Madison loves to play with Legos. He sleeps in a loft bed and has a bat cave under his bed. When he finishes breakfast on time, Madison gets to watch cartoons before school. Madison likes pizza; he doesn’t really like green beans, but he eats them because his daddy asks him to. Madison likes school. He can do complex math problems in his head; learning facts comes easily to Madison. Madison has one friend at school- that’s all he needs. He doesn’t care what people think when he has an accident, but all the children make fun of him.

 

Madison’s mom and dad won’t tell the school that he has a special need because they have heard from other parents that he will be treated differently by the children and the teachers. He will be called “dummy and weirdo.” He will always be singled out as different. How is Madison different from your seven year old? Your child doesn’t like Legos and loves green beans? Maybe your seven year old can’t do math facts in his or her head.

 

Our children are all different. My boy has brown hair and is tall. My girl can’t do math facts in her head. Madison should not be singled out because he has a disability. If the school and the children find out about Madison, they will put an invisible placard around his neck. The placard should read – “Though I may not be the most social human being, I will grow up and probably be an Astrophysicist or create computer programs that you can’t even fathom.” Instead the placard will read “I am different. It may not be safe for your child to play with me. Society likes to place labels on people like me.”

 

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