Experiencing Life

[Guest guest]

Thursday, March 18, 2010

Experiencing

Life!

Do you know the difference

between education and experience? Education is when you read the fine print;

experience is what you get when you don't. ~Pete Seeger

As I continue my journey through this life with Sam I run across

so many questions???? Some days I can simply overwhelm myself with the

" What if's? " . Sometimes I paralyze my thoughts, my actions and my

dreams with the unknown. When I learned of Sam's diagnosis I went into hyper

research mode (my sister-in-law can attest to this). She asked me what

she could do I told her to go to Amazon.com and buy the top selling books on

Down syndrome.

I spent the first week of Sam's life reading through the books

she brought me and staring through tear filled eyes at the little baby in front

of me. Before the books came Jeff and I both commented " He doesn't look

like he has Down syndrome " . But when I opened the books...page after page,

photo after photo...I saw Sam. What scared me more was when I read the text,

some of the books were encouraging, some were downright scary and part of me

just kept believing that they were not talking about my child, they were not

talking about my Sam. What I didn't realize is that those books could have

never prepared me for the experience and journey that I was about to embark on.

I read and read and read and still to this day read everything I can about Down

syndrome. But my knowledge, my real experience comes from the day to day

stuff...our life with Sam. Although the books were helpful to give me a broad

picture of how Down syndrome may affect my child they in no way could define

how this child would affect me.

I read in quite a few of the books and of course heard from

countless people that children with Down syndrome are gentle, loving and happy.

Hmmmm, Sam must have forgot to read that section. Yes, Sam is loving and happy

if he's doing what he wants to do or getting his way but Sam is also

strong-willed, persistent and can yell " NO " loud enough to be heard

in 2 counties. Gentle doesn't quite come to mind when Sam and I are trying to

work through math and he is trying to push over the magnetic board or throwing

the marbles across the room. Gentle doesn't strike me when he's bopping the dog

on the head or hammering on his older brother because he's sitting too close.

I'm pretty sure both Bob and Ellen Doman from NACD would agree that Sam had a

few behavior issues that didn't appear to be gentle, loving or happy.

Sam is Sam...unlike any child I have ever met and unlike any

child I read about in all my books on Down syndrome. In the early days Sam

wasn't one of those children who watched other children and did the same thing,

he struggled to crawl, walk, make sounds and then struggled even more to hear,

listen and speak (we still don't have listening down quite yet). Sam had to be

shown how to do things other children just picked up on naturally and in some

cases, he had to be shown over and over. But I quickly realized that if I took

the time to try something new....to help him learn something new...we made the

type of progress I had hoped for and he continues to make advances. Life is

really all about experiences and opportunity. When Sam's behavior got in the

way of my going grocery shopping or taking him to any store for that matter I

could have chosen to take the easy way out...to arrange for him to stay home.

When Sam acted out in restaurants, we could of chosen to eat at home and

skipped eating out. When Sam became bored and threw a tantrum in church we

could have decided not to go back and just sleep in on Sunday mornings, God

would understand.

But each of those experiences were a chance to introduce

something new, to work on an area he struggled with, to help him succeed, to

watch him grow. If we limit his experiences we disable him further. Now just as

the quote at the beginning of this post states...these experiences for Sam have

been both positive and negative, there isn't a clearly defined right and wrong

way to help him through an experience...but each time we learn a little bit

more. We learn what works for Sam and also what doesn't work, we find things he

loves and things he hates. We begin to come up with strategies that work for both

Sam and the people who work with him. At the same time we try to respect Sam's

choice to like or dislike something...but we also try to keep in mind that

there are many things in life we all dislike but still have to do because it is

simply a part of life.

There are those days when I wish this was all so much easier.

When I wish I didn't have to think or work so hard at it. Today as I watched

Sam empty the dishwasher I couldn't help but think that this type of task would

have normally taken me 2-3 minutes but Sam was still emptying after 15 minutes

and the dishes were on the counter top and not even in the cabinet yet. After

that we sorted laundry, another 20 minute task as we noted the colors, who's

clothes they were and what type of clothing it was. My mind cycles through all

the tasks still to be completed while my heart slows me down to allow Sam to

learn and complete another task. The Lord is desperately trying to teach me to

be patient, to teach me to be humble, to teach me through these experiences.

Life is the art of drawing

without an eraser. ~ Gardner

Each of our lives and the lives of our children are like an

empty canvas. It is up to us to determine what our life and their life portrait

will look like. Our experiences and what we learn from them shape who we are

and what we become. I hope to continue to add a lot of color and depth to Sam's

portrait and on those days when the colors become dark and the strokes are

thick and heavy I will try to stop, take a moment to reflect and begin again

creating a unique, one of a kind, priceless creation that the Lord entrusted to

me.

This post brings to mind one of my absolute favorite YouTube

videos " Difference is an Artist's Game " .

http://www.youtube.com/results?search_query=difference+is+an+artist%27s+game & search_type= & aq=0

Sue Mayer

Mom to Sam (9) with Down

syndrome, Brain Injury, Apraxia, Dysphagia, Respiratory/Immune Issues and

Bi-Lateral Conductive Hearing Loss or as I like to say “Yada,

Yada,Yada”

www.suemayer-specialneedsmom.blogspot.com