The program concentrates on brain injured children, - which includes Down Syndrome children, - tapping into good brain cells taking over the bad brain cells. Parents are the key players in a home therapeutic approach that involves providing simple yet intensive neurological stimulation for their children. Apparently the usual local therapy programs just treat the symptoms. This program, if carried out properly has had children often performing even above levels exhibited by most average children. I am going to read about the program on their website and have called them for an information packet. Mark's sister, Sharon, is also doing some research in this area and others.
The expenses of alternative programs are not covered by insurance or Medicaid, so we also ask prayer for meeting financial needs if we feel that these treatments would give Katelyn the best opportunities in life.
We are traveling down a new and different road with Katelyn Grace. Mark and I are experiencing the usual "roller coaster" of emotions that come along with a child born with disabilities, such as the fact that this is something that we cannot fix for Katelyn, or make it go away. We can't slap on a band-aid and "make it all better." We wonder if she will be able to live on her own one day, and if we should gear her towards motherhood since she will naturally want to be like her mother.
Since we don't yet have a detailed diagnosis until we see a geneticist Feb. 21st, we wonder what her cognitive abilities will be, her limitations as well as her accomplishments, her health issues, etc.
I would like to share the following article that was given to us by my good Christian friend, Helen Royal. It puts the discovery of Katelyn's Down Syndrome in perspective and was a great encouragement:
http://journeyofhearts.org/kirstimd/holland.htm
This inspirational article was suggested by several sources. When I read the article, I was struck by how inspiring it was for any one who had experienced a loss. More important it reminds us to not spend a lifetime mourning what might have been, but to look at a loss as an opportunity for discovering something very different, but perhaps also equally wonderful.
WELCOME TO HOLLAND
by Emily Perl Kingsley
©1987 by Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
* * *About the Author
Emily Perl Kingsley is the mother of a child with Down Syndrome, Jason.
Over the years she has done much to improve the ways in which people with disabilities are portrayed in the media. She worked as a writer for SESAME STREET, receiving many Emmy Awards and was instrumental in integrating mentally and physically disabled children and adults into the format of SESAME STREET. Her works with the National Down Syndrome Congress, National Media Council on Disability, as well as numerous publications have earned a multitude of humanitarian awards and special recognition for herself and her family.
WELCOME TO HOLLAND is her inspirational essay which has been reprinted in many languages and in many forms all over the world. Dear Abby runs this piece every October to commemorate National Down Syndrome Awareness Month and it has been reprinted in CHICKEN SOUP FOR THE MOTHER’S SOUL. It has been used as the theme for several disability conferences, was worked into a patchwork quilt and is the subject of a series of oil paintings. It was recently set to music as a choral piece by composer Terrence Minogue and was performed at a concert in Sacramento, California.
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