April, 2000
~Sharing News~
Newsletter of "Sharing Down Syndrome Arizona
April, 2000
Calendar for the East Valley
Wed 4/26/2000
Martha Beck
(Note: changing from the second Thur to last Wed)
Author of “Expecting Adam”
5/11/2000
“Thank you” party At the Johnson's House.
(note change from third Thursday to second)
East Valley:
Wednesday April 26th, 7-9pm
Mesa Student Services Blding
1025 N. Country Club
(East side of Country Club between University and
Brown Road, across from Mesa Lutheran Hosp.)
Respite care will be provided
Please enter through outside nursery door, the one farthest to the east.
West Valley:
Tuesday April 11th,7:30pm
At St. James Catholic Church
19640 N 35th Ave./Glendale
About: IEP's
By Joan McCabe-Kern from Advocates across America.
Respite care will be provided
Dearest Friends,
For our April Sharing meeting I am excited to have Martha Beck, author of the best seller, “Expecting Adam”. This book is the true story of the emotional, physical and even spiritual journey this precious mom found herself on, when she found out her unborn baby was going to have Down syndrome. I love how Steven Covey says, feelings aren't bad or good, they just are. Martha is pro-choice. She is also a Harvard graduate, who, much to the surprise of her academic peers, decided to keep her baby. To me her reasons for having her son are far more compelling that my words can give justice to. I love this crazy lady, who shares her struggles as she comes to terms with what it all means to love a child like Adam.
My beloved parents,
You know the feeling…”You win some, you lose some, and some you don't compete in.” Well dear friends, I feel I owe you and Dr. Dan Kessler a big apology. Without meaning to I feel I let you both down this past month. You came prepared to hear a wonderful talk on the medical side of Down syndrome. But he came prepared to teach us about a baby's 'failure to thrive' which he is an expert on. When I booked him over a year ago,
I guess I automatically assumed, since we are a Down syndrome support group, that he would talk about Down syndrome. I try to let my guest speakers share what comes from their hearts, because I know often as people do that, inspiration can come. It just didn't work this time.
So dear parents and dear Dr. Kessler, from the bottom of my heart, please know that I am sorry. A sampler by dear friend Margie Bibbs pretty much says it all… ”Please be patient, God isn't finished with me yet.”
One of the greatest things about being David's mom is not only watching my own growth but being allowed to share some heart felt and tender moments with dear friends like you.
Last month I shared with you something Annie Hoyle had written me about her precious daughter Riley. This little girl is only two years old and they found out she has leukemia. The day I found out broke my heart. It was the same day that Shawnie and Kevin Huff called to tell me their beloved Braxton (13 months) had just passed away. It felt way too hard. The day before that my friend, Josh's mom had to listen as the director of special education at Sunrise Preschool told her after only two days, Josh was not welcome there anymore.
I cried so much during that time. For so long I have tried so hard to make things better for our kids, but I truly felt like I had failed. I found out prejudice and ignorance, regarding disabilities, are alive and well. I found out something that Mohammad Alli said is true…”A man can take a punch, but he can't take punches.” Often as parents we fee like we take many 'punches.'
I have lobbied with the legislature to speak for those cannot speak for themselves. Somehow I thought it would be different by now. I found myself struggling with my dear God as I want to say, “Thy Will Be Done” but I found myself almost adding … ”However, here's what I recommend.” How silly I am dear friends. I am just beginning to understand that it is the imperfections in our world that put into sharper focus the perfection in our children and others who treat us kindly. Each day that I live, David shares with me a life I never could have imagined. You know how strongly I feel about inclusion for our kids in all aspects of their
lives.
Each time David's best friend Blake (who is very typical) or any friend for that matter, asks him if they can get together, I know that we have chosen the right path for our son. But there are still amazing experiences that even I am not prepared for. Maybe what surprises me the most is finding out our kids are more like a typical child than they are different. David is not unlike any of my other six children who try to get away with things like leaving for school without brushing his teeth. (So what if dad's a dentist!)
Yet my heart is continually touched as David tries to find his place in this world and as others help him do so.
A short time ago, as Curt and I were driving to Scottsdale, my cell phone rang and it was our son, Brad. He said David had been invited to a birthday party for a girl named Joy Hatch and he wanted to know if David could go. Well, I had not reason not to let him go other than the fact that I was having a nervous breakdown! How in the world could I let him go if I was not there hiding in the shadows making sure things were okay? I didn't even know half the kids who would be there. I struggled worrying about the “What if's”. I was over an hour away and it was out of my hands. I asked Brad to check for sure because maybe David had just invited himself, but no, this was a real invitation.
I found out that night what that feeling is, like a lump in your throat…it is our hearts! So, with weak faith, I said he could go.
I had a hard time enjoying myself that night, worrying about him. But guess what? He did just fine. David came home on cloud nine. He had a hard time going to bed that night, because all he could talk about was how much fun the party was and how he wanted to have a party.
In this journey you are taking with your son or daughter, life will be better than you could ever know. Sixteen years ago I was a timid mother, one who felt totally unprepared and overwhelmed at the responsibility that was mine. I never wanted my son to experience the cruelty of this world.
Recently I read a journal account of my feeling the day we were able to bring David home from the hospital. Just reading the words made me cry and as I read the words, “With tears in my eyes and with a broken heart, I turned to Curt and said, 'What are we going to do?' His reply was simple, 'We are going to love him.'” And that we have!
My precious parents…I have come to the conclusion that our kids will turn out just fine in this old world…although we may get a few gray hairs in the process!
I am so blessed to know you precious parents. You don't know it but not only do you lift my heart and give me strength, you teach me. This month I learned that a sweet gentle mom like Josh's mom can fight the system. I can't give you details right now, but Sunrise Preschool's battle is far from over. I learned that when I went to Shawnie and Kevin's house right after Braxton passed away, they were the ones who comforted me. I found that as I have struggled with Riley being sick, it is Annie and Riley who me great courage and the ability to go forward in faith.
I am so blessed to know you as friends. When Annie first opened her heart to me with her fears for her precious Riley, I cried. I wanted only to make thing better for her and yet I felt so hopeless. I know I am not 'politically correct' my beloved friend, and I never want to be. I know God is helping you and me every inch of the way, especially when that way feels hard. Please permit me to share some tender feelings of the hearts from two precious moms. One in Arizona and one in Italy…
(from Annie Hoyle)
January 25, 2000… “Riley is handling the chemo beautifully and will have several more treatments in the next 6 months. The beautiful part is that children with Down syndrome have a higher cure rate than the general population. Riley is a part of a national study of kids with Down syndrome and leukemia. We are using an experimental treatment which has worked very well for the last year and isn't very different from the previous chemo. It is easier on her body and has less side-effects. I've never seen Riley bald since she was born with a full-head of black hair. She'll be cute! Please pray that my sweet angel doesn't die. I'm so scared! God is big! He'll carry us through!”
February 14, .2000… “Gina, I wanted you to know how Riley is doing. She is doing much better than I am, that's for sure. She is so blessed with such a great outlook and attitude about everything. I am certain that when we get to heaven, nobody will have cancer but EVERYBODY will have Down syndrome. The joke is on us here on earth. We strive to make them like us when all the while, we are supposed to try to be like them. Ironic! I love you! Annie Hoyle”
March 14, 2000 “Riley is so young and will probably not remember any of this. They tell me that children under three usually don't remember any of the treatment. Riley just wakes up every morning knowing only that she is two years old and needs to go play. She doesn't know she is sick, she doesn't know she is supposed to feel bad and she doesn't know how worried we are. She just knows she is an angel baby and acts like one all the live long day! If she has cancer and acts so precious, I can stop feeling sorry for myself and make it through with my head high and a smile on my face. One day when I grow up, I am going to be just like Riley!”
(from Ann Brinkman in Italy who is coming to AZ)… “Finally we to get to meet these wonderful people I've been e-mailing for almost two years!! Can you believe Sara will be two years old next month?! I can remember when I used to write to you, with her just weeks old, lying on my chest. Now she's a little toddler, so big, and soooo cute! I get choked up still thinking of those days. They were difficult.
I remember them so well, and really they seem so far away from who my sweet little girl is today. I have this wonderful picture of her feeding the pigeons down in San Marco square in Venice. She enjoyed herself so much that day, dishing out the popcorn kernels to the birds; it just made my day watching her.”
We parents really are the ones who grow the most. Once, when a young resident pediatrician was visiting our family we were being very honest with him about how our life has been since David was born. I made the comment…”I would not change one minute of it.” But my precious, all too honest husband Curt, smiled and said… “Well, maybe one minute.” God bless you dear parents and all you who work and serve our children. You are making our world a better place.
With love, David's mom
Friends of SDSA:
Sharing Down Syndrome Arizona, Inc. is putting together our very own local calendar, "Down Right Adorable" for the year 2001! The initial cost for this project is very great. We are asking businesses and individuals if they would like to help with donations. All donations are tax deductible and anyone who donates $500 or more will get an ad in the back pages of the calendar. Any other contributions will be appreciated, and the benefactors will be listed on the calendar as well. We are also looking for help in printing and photography.
We are asking you to pass this information on to friends, family and business acquaintances.
If you have any questions, comments or would like to donate, please contact me and I will be happy to give you any information you may need.
Sincerely,
Alice Bayer
Email:bayer@dancris.com
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Want Ads
If any of you have child-related items that you would like to sell, or give away to another family, post it here! We would also like to post any “wanted” items as well!
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“No one can develop freely in this world and find a full life without feeling understood by at least one person.”
Paul Tournier
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El contacto de habla hispana para nuestro grupo de apoyo a los padres “Sharing” es Raquel Hoffman (480)357-9594
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Visit Our Web Site!!
At: www.psln.com/~sharing.
I am excited for you to look at it, and give me any feedback that you feel is appropriate. We have a section called “Arizona Family Webpages” and I am inviting you to join us! You may email me off of the website, or at
Lorimarque@aol.com
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“People love others not for who they are, but for how they make us feel.”
Irwin Federman
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EFFECTIVE TEACHING STRATEGIES FOR SUCCESSFUL INCLUSION: A FOCUS ON DOWN SYNDROME
This is the most AWESOME book. You HAVE to order it if you want to make it happen with inclusion in your school. I have just read it and I can't say enough good about this book!!! It is one I am going to make sure I give to each of David's teacher's next year.
We do have one copy in our lending library, but if you would like to buy one, or more, for yourself, please e-mail Valerie McKinney at: prepprog@telusplanet.net The cost is $15.00 plus $5.00 for shipping and handling. But I promise you, it is worth every penny of it!
Please mention you heard of them from us. We don't not make any money but they are interested in finding out how you heard of them. If you would like to write or call them you may at: the PREP Program, 1001- 17th Street NW, Calgary, Canada AB T2N 2E5. The phone number is (403) 282-5011 and their fax is (403) 289-7313. I always try to pass along great information to help you and this is the best I've found.
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“There is only one criterion for inclusion. Breathing, life itself.”
Marsha Forest.
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Lori is always finding great stuff on the Internet about Down Syndrome.
Here are two web sites she thought would be good to pass on…
www.ds-health.com
The author, Dr. Len Leshin, is not only a pediatrician, he is also the father of a boy who has Down Syndrome. He practices in Corpus Christi, TX. Please check it out!
www.quasar.ualberta.ca/ddc/incl/intro.htm
This is a great web site about inclusion.
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Soon we will be sending out a survey and we hope you will respond. We need your input to help us know how we can make SDSA even better for you.
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Our Gina Johnson was interviewed for an article that was published in “Raising Arizona Kids”, March 2000 issue. It talks about the IEP process and how Gina feels about her son.
Also, a story she wrote about what she's learned from her son has been published in a book called “Another Ray of Sunshine for the Latter-Day Saint Soul”. It is available at the Deseret Book Store in Mesa. It is the story in our web site called “Love, David's Mom” but they entitled it “Learning About Love.”
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Garage Sale!
I'm orginizing a garage sale to be held at my house:
17637 N 35th Dr, Glendale, on April 7th and 8th. All proceedings will go to Sharing Down Syndrome Arizona. If you have any items you'd like to donate please contact me at
(602)547-9855.
Thanks, Martha Vance
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Sharing News is a free newsletter produced by Sharing Down Syndrome Arizona, Inc., from September through May each year.
Sharing Down Syndrome Arizona! Inc. is a non-profit agency. We appreciate your support, donations can be send to:
c/o Gina Johnson
425 E. Tremaine Ave.
Gilbert, AZ 85234
(480) 926-6500
e-mail:gina.j@juno.com web page: www.psln.com/~sharing
You can also contribute through United Way
by earmarking your donation with our address and phone
# above.
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