ELLIE'S BLOG on Living Well with Disability

Again another summer run for Special Olympics down my street! This is one of many events across our country that have been repeated for 42 years in our country.

Year by year other countries (now 180) around the world started to partipate in the Special Olympic movement for those with intellectual disabilities.   In fact the Special Olympics is fastest growing grass roots volunteer movement on the planet .  They are the world's largest public health organization serving 200,000,000 people with intellectual disabilities (3 percent of the global population).

How has this happened that one women (Eunice Kennedy Shriver) developed a sports program for the intellectually challenged in her backyard to where it is today.  Obviously a total commitment and determination on her part.

But it had to be more than that. And it was to see the joy of a sense of accomplishment on the face of one of the athletes, to watch the athletes determination to work hard to get better, to realize that you didn't have to win, it was the effort you put in that mattered. And then one could see that there was a carryover in these athletes ability to function in the community due to these events. Then gradually society itself began to have a different opinion of people with Intellectual disabilities.

In some ways there is still a long way to go for the intellectually disabled to be fully included in society with equal opportunities for a full and productive life.  But look how far we've come.

                                                    ellie

.soccer here...soccer there...soccer(football) everywhere !

Unity Cup Match

A Dream Come True

Unity Cup participants including South African president Jacob Zuma, Special Olympics global ambassador Zhang Ziyi, NBA legend Dikembe Mutombo, various soccer legends and Special Olympics athletes gather for a group photo outside Cape Town Stadium on Friday July 2^nd just after the teams practiced in advance of Saturday's match.

This exciting Unity Cup Event took place at Cape Town stadium on Saturday July 3 just before the World Cup quarterfinal between Germany and Argentina.

And what a game it was. Celebrities, soccer legends and even the President of South Africa, Jacob Zuma,took to the field alongside 16 Special Olympics athlete's from all over the world. The two teams - named ?Special Stars? and ?Happiness United? - enjoyed a 20-minute match on the FIFA World Cup? stadium pitch.

Both Coca-Cola and Special Olympics executives hailed this as the beginning of an incredible journey together.  The match ended in a 2-2 draw.  All four goals in the match were scored by special Olympic athletes.  This demonstrates just how talented the soccer players were. Click on the You Tube video to see a great sport played with enthusiasm and skill.

As football (soccer) is the world's most popular sport incorporating it into the Special Olympics is a natural progression. Today more than 20 national football federations across Europe have integrated support of players with intellectual disabilities into their regular activity plans. For more information click onto:

http://www.specialolympics.org/global_football.aspx

Hopefully here in the United States where soccer(football) is not the leading sport we can do the same.

As Ossie Ardiles, Argentinian football legend and Co-Chair, Special Olympics Global Football Advisory Committee said, " Through football we can certainly help these individuals achieve greater things, on and off the field; in turn, they can inspire all of us with their unstoppable spirit."

                                                                                     ellie

Last week my husband and I decided to go to a couple of new garden centers.  We have several close to us that we have used for a lot of our gardening needs.  But it's fun to go to a new place as they usually have some different flowers or other garden paraphernalia.  I guess we've been spoiled because the local garden centers have the paths that are easy for me to use in my wheelchair.

As heat is a problem for people like me with MS we started early before it heated up. The first garden center we went to was recommended by a friend who works there part time.  Pulling in we realized it was heavily graveled with large stones. We looked at each other knowing this could be a potential mobility problem for me.  But as we are not people who give up without  effort we took out my electric wheelchair and yes the large stone gravel was limiting.

However, the people there were very nice and brought me a chair to sit on as I had to use my cane to get around where the electric wheelchair couldn't go. As my walking distance is quite limited there were many areas that I could not get to. But we did find several plants we wanted and bought them. By the time we were finished I was beat but we still had one other place we had planned to go to. So I rested while my husband drove us there.

The second place was also all covered with gravel. Knowing I would be limited in my electric wheelchair I figured I'd try using my large wheel wheeled walker with the seat. I knew my husband or I could lift it if I got stuck and I could sit when I needed to immediately on the spot. It was easier to get around and I tried to find shady spots between my short distances that I could walk. However it was later in the morning and hotter and suddenly I could no longer walk.  So after resting I found I could take a few steps and added my sideways- backwards walk which brought me further. Normally my next step would be to sit on the seat of my walker and push myself backward. But due to the gravel that was a no go. However with my husbands help and time we made it back to the cashier with our purchases and then to the van.

As we left I looked back with longing as I did with the former garden center. Longing for the sites with flowers, bushes and trees that I could not get to. But I checked out what we had purchased with great satisfaction. They were plants that should fill spots that needed them perfectly.

But as I was planting them with my husband's help in some cases I felt such a sense of sadness. There were some areas I wanted to put some more perennials in. And I have to admit I was really tired and angry when I thought of all that impossible gravel impeding my shopping adventure for my garden.

And as I continued to ruminate on that awful gravel I pictured myself going places where they had gravel in the following wheelchair.

                                                      This is called the TANKCHAIR. This chair was created and built by Brad Soden for his wife who broke her back in an accident. Confined to a wheelchair her life was changed dramatically. She and her husband and their 5 children loved to camp. An incident on a camping trip compelled her husband to create a chair for her. For more information on the TANKCHAIR and why and how it was built go to  http://www.tankchair.com/ 

In this crazy wheelchair gravel would never be a problem for me. I could also go hiking on trails that are inaccessible to me now and just ride across open fields or along the beach. I wonder if I could even climb up sand dunes, hill's or even mountains ?  

My electric wheelchair is meant for going over floors, sidewalks, grass or very fine gravel.  There are standard electric wheelchairs or scooters with larger wheels that could go over larger gravel and some limited open terrain but they are expensive and not in my budget.

But this wheelchair is the max. It's certainly not in my budget. But what a wheelchair !!

                                                                               Look at that expression of utter joy on Pam Soden's face.

What a husband!

What full fun day's of camping this young family will have!

After having fun picturing myself in this TANKCHAIR  going all kinds of places unhindered suddenly my anger at the gravel diminished.           

I glanced over to the chaise area (my special shady nook) on my deck to the plants I had just added there .                                                     The realization that I had almost forgotten the pleasure that I felt from what I did see and had purchased hit me. There's nothing wrong with wanting things to be better. But again the important lesson of appreciating and getting pleasure from what can be can never be forgotten. 

To find current information of new ideas to increase mobility by adapting your wheelchair or a innovative new products go to the Wheelchair Diffusion Blog  http://www.usatechguide.org/blog/category/wheelchair-weird/

Live well and don't obsess on what you can't do.

                                               ellie

Last year my sons put in a raised salad bed.  And then I asked them to write up a detailed description with picture's here on my blog so I could share it as it was just so great.  It can be found on my blog  of 7/29/2009 "How to Make A Raised Salad Bed".

last summer I was able to able to plant, grow and then pick my salad greens most days by myself.  It was so successful that we did not buy one salad green till October. And at the end of the summer we composted the bed to put it to sleep for the winter.

Over the winter we just watched to make sure the snow was not piling up too high on the top of the bed. Periodically we just cleared off the top of it a bit.

This spring (which came early this year) we assessed its condition and it was good.  However my sons decided they didn't want to risk any chance on long-term unsteadiness as it was a keeper. 

So they raised each end, poured in cement for it to rest on to give it utmost security.

Then they prepared the bed for planting our salad greens this year.

This is the fantastic result. 24 different wonderful greens in a patchwork quilt pattern ready to eat in Mid-May. Who needs flowers for beauty! (Oh we have flowers too.) And now with the new ramp they built for me to go down off the bridge "I'm independent no matter how my legs are every day.           Bon Appetite         ellie

"Into a woman's keeping is committed the destiny of the generations to come after us."  -Theodore Roosevelt

Happy Mother's Day all special mom's.

To those who are raising young children with   disabilities. And those whose older children develop disabilities.

"The love of a mother is never exhausted. It never changes, it never tires; it endures through all; in good repute, in bad repute. In the face of the world's condemnation, A mother's love still lives on." - Washington Irving

To those who have disabilities themselves and are raising young children with disabilities or are raising young children without disabilities.

And those who have disabilities and their grown children develop disabilities.

"My mother was the making of me. She was so true, so sure of me, and I felt that I had someone to live for, someone I must not disappoint.  - Thomas Edison

And I don't want to forget grandmother's who have disabilities themselves or whose children or grandchildren's children have disabilities too.

"When you are a mother you are never really alone in your thoughts.  You are connected to your child and to all those who touch your lives.  A mother always has to think twice, once for herself and once for her child." -Sophia Loren

And my favorite??..

The Special Mother
by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter. The Patron saint will be Cecelia"
"This one gets twins. The Patron saint will be Matthew"
"This one gets a son.   The Patron saint.....give her Gerard.   He's used to profanity"
Finally He passes a name to an angel and smiles.  "Give her a disabled child".
The angel is curious.  "Why this one God? She's so happy"
"Exactly," smiles God.  "Could I give a disabled child to a mother who does not know laughter?  That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair.   Once the shock and resentment wears off, she'll handle it.   I watched her today, she has that feeling of self and independence that is so necessary in a mother.   You see, the child I'm going to give her has his own world.   She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that.   This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? is that a virtue?"
God nods.  "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary.   When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them.   She will never be alone.  I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"
"And what about her Patron saint?" asks the angel, his pen poised in mid air.  
God smiles "A mirror will suffice"

Have a wonderful and happy mothers day! Let yourself be pampered and filled to the brim with love.                                               ellie