Looking For the Easy Button??

[Guest guest]

Friday, October 8, 2010

Looking

For the Easy Button???

This post has been rolling

around in my head for quite some time and it's time to just get it out.

Wouldn't life be great if we all had an " Easy Button " ....or would it?

When Ben began to struggle in school and was diagnosed with Dyslexia and

learning disabled in reading, writing and spelling...I would have loved to make

all his struggles disappear with just the push of a button.

And don't even get me started on Sam...Down syndrome (push the button),

Speech/Feeding Issues (push the button), hearing issues (push the button),

respiratory/immune issues (push the button), school/homeschool (push the

button), medical emergencies (push the button), diet (push the button), NACD

(push the button), and now Perthes??? Let's just get the duct tape or gorilla

glue and secure that button into a permanent pushed status.

As a volunteer for our Wisconsin NACD Chapter, as a parent liaison in our

school district, and as an active advocate for children with special needs and

their families I have had the wonderful opportunity of meeting many wonderful

children with special needs and their families. I know in my head that every

child is unique and you can not compare one child to another but yet my heart

would often compare Sam to other children with and without Down syndrome. My

heart would hurt as I listened to a girl with Down syndrome easily and

expressively communicate her thoughts and ideas while Sam struggled to get out

any words. My heart would hurt when another little boy would be up and walking

at 15 months and Sam didn't take his first step until after he was 3 years old.

My heart would hurt when other children could easily follow instructions and

Sam needed constant repetition and reinforcement. My heart still hurts when Sam

is sick or hospitalized while other children are running and playing and having

fun. My heart now hurts that Sam will have to go through a major hip surgery

and be immobile after we spent the last year finally getting him mobile and

liking it.

Where the hell is that EASY BUTTON???

Sure that button would have saved me from a lot of heartache, it would have

freed up a ton of my time, it would have given me less gray hair, less stress

on my mind and body... but it also would have taken away some other things.

Like the hours of time I got to spend interacting with my boys. I'm not going

to sugar coat it and tell you that the hours doing Ben and Sam's NACD program

were always joyful and uplifting....that would be a load of crap. But if I'm

honest with myself, the time spent working with both of them has strengthened

our relationship, has built a bond, has taught us how to treat each other and

how to depend on each other. We have yelled, screamed, laughed, cheered and

cried together. I cherish the time Ben and I spent researching Dyslexia, the

time I spent reading Walt Disney's biography to Jeff and Ben, the time Ben and

I spent listening to and enjoying audio books, helping him work with Dragon

Naturally Speaking, riding bikes while doing spelling and digging holes while

studying history.

Ben's struggles have shaped him into the young man I am proud of today. He

still challenges me...but he also makes me laugh. His quirks and differences

make me appreciate the unique person he is. I am happy I took the time to work

with Ben and figure out how he learns. I smile at his huge vocabulary...knowing

he would never be able to spell most of the words he uses but his use of them

is his skill. Ben is quick witted, funny, and has a heart of gold under that

tough guy exterior. He's going to be an awesome adult.

Oh and I don't want to leave out my life coach. A life coach is a professional

that deals with relatively healthy people who want to improve their lives in specific

ways, such as changing careers, finding a healthy relationship, taking their

business to a new level, losing weight or deepening their self-understanding,

for example. They deal with stress management as well as time management, goal

setting and other key areas of change to help their clients lead more balanced

lives that better reflect clients’ personal values and priorities. It

differs from therapy in that the focus is more on the present and future than

the past, more on goals and behaviors than emotions and emotional patterns, and

there is a more equal balance of power between the coach and client than

between the typical therapist and client.

My life coach is Sam. Sam may not be a professional but he has certainly

improved my life and deepened my self-understanding. He has created stress and

by example has taught me how to deal with stress. My stress over Sam's medical

issues and his going into respiratory distress can't even compare to his

struggling to take a breath or his work to regain his physical abilities after

surgery. Sam is not worried about the problems of tomorrow, he lives in today,

he lives in the moment....he doesn't compare himself with others, his life is

at his pace. Many people would argue that Sam's life is simple because of his

lack of understanding. I would beg to differ...I think Sam's life is simple

because he chooses it to be simple and he is leading by example. What would we

all be like if we were more like Sam? Sam places little value on material

items, he values his family and friends...he values all people. Sam doesn't

care if you are a high paid executive or a homeless person, a movie star or a

janitor...Sam will speak to you and treat you the same. Sam never forgets to

pray, he is amazed by everything around him from the ant on the driveway to the

Grand Tetons. Sam expresses himself through actions instead of words. He lives

each day fully, smiling and laughing often, but Sam is strong willed, he tells

you what he is thinking, he challenges you to change how you work and interact

with him. Sam, like Ben can be a force to be reckoned with....but when they

feel understood, when they feel appreciated, when they feel that you have

listened to them they are compliant and how they think and figure out things

will amaze you.

There is no " Easy Button " in my life just as their is no magic

twitching of my nose like in the show Bewitched

to get my house cleaned. Life is what it is...the difference is how

you perceive it.

Your living is determined not

so much by what life brings to you as by the attitude you bring to life; not so

much by what happens to you as by the way your mind looks at what happens.

Kahlil

Gibran

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