~Sharing News~
Newsletter of Sharing Down Syndrome Arizona
August, 2000
Volume 9, Issue #8 - Published Monthly
Schedule for 2000-2001
East Valley Meetings
September 28, 2000
“Signing as a Step to Speech”- Candice Bradshaw
October 26th, 2000
Shari Dolin-Behavioral Issues “From Tots to Teens”
November 14th, 2000
“Anyone for Therapy?” - We will have a PT, OT and a Speech
Pathologist discussing new ideas.
December 2nd, 2000
SDSA Christmas Party
January 25th, 2001
How to transition into preschool
February 22nd, 2001
“How to Handle an I.E.P.” by Joan McCabe-Kern
March 22nd, 2001
“How do I make services work for my child?” by Marta Urbina from Raising Special Kids.
April 26th, 2001
“Preparing Wills, Trust Funds-Planning for the future” by the Dignity Group
May, 2001
Family Dinner party at Gina Johnson's house.
Next West Valley Meeting
Tuesday August 22,7:30pm at St. James Catholic Church
19640 N 35th Ave./Glendale
Kim from Maricopa Council on Developmental Disabilities explaining their organization does.
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In Loving Memory of Michelle Lynne Kelleher
I had a real tough time when Scotty was born. It never occurred to me during my pregnancy that there could be anything wrong with my baby. And then, in just a few minutes after his birth all my hopes for him were shattered by the doctor's words “We think your baby has Down syndrome”. How can this happen to us? to me? How was it possible that out of my body came this child that was completely alien to me. No, it wasn't true. I couldn't possibly be the mother of a baby that was, most likely, going to be mentally retarded. Someone made a huge mistake.
For a full month all I could think about was the two words “mentally retarded”, and the impact that they would have on our lives.
And then on December 4th, 1996, I met Michelle Kelleher, a little 2-year-old girl with Down syndrome. And my outlook on Down syndrome changed forever.
We were at a FACT meeting that her parents hosted, and were celebrating Christmas. I remember her on that night clearly. Everyone brought treats to share. Michelle spent the night eating cookies; she had frosting all over her face and hands. She kept coming to see Scotty, who was one month old at the time, and she'd say and sign “baby”. She was so adorable… Without knowing it she touched my heart and made my pain go away.
She was the first person I met with Down syndrome, other than Scotty, and she made me realize that life wasn't as bleak as I was imagining it. She gave me back all my hopes for Scotty, and showed me that all children are precious regardless of abilities.
Michelle's life was too short by any standards, but I'm sure she touched many hearts, like she touched mine, while she was here. Thank you Michelle, we love you.
Martha C. Vance
Michelle Lynne Kelleher was born September 2nd, 1994 to Joe and Laurie Kelleher and her big sister Megan in Phoenix, Arizona. She passed away on July 14th, 2000.
God saw you growing weaker
So He did what He thought was best,
He came and stood beside you,
And whispered “Come to rest”.
We could not understand it,
No matter how we tried,
If love, alone, could have saved you,
You never would have died.
You bid no one a last farewell,
Nor even said good-bye,
You were gone before we knew it,
And only God knows why.
Unknown
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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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El contacto de habla hispana para nuestro grupo de apoyo a los padres “Sharing” es Martha Vance. La puedes llamar al (602)547-9855
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AOL CHAT ROOM
There are currently three DS chats on AOL, different times, different days.
The one Mary Green (local mom) hosts is on Monday nights at 8 p.m. When you sign on, go to keyword "Allhealth", click on the icon for chats, then click on the icon for Health Conference, OR send an email to my AOL screen name: HOST AHTH MaryG and I
will send you a complete chat schedule with a link that will take you right to the chat room.
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Web Sites Of Interest
http://www.specialedlaw.net is a multisciplinary internet resource for parents, attorneys, teachers, psychologists, and others on matters relating to Special Education Law and legal issues concerning children with special needs.
http://www.edc.org/cgi-bin/urban/get/event2.html
National Institute for Urban School Improvement, Inclusion Online Event, June 5-16, 2000 read the Message Board for "Inclusive Approaches to Schooling".
http://www.fed-icc.org
[Vision Statement from web site] The Federal Interagency Coordinating Council will assure that all children ages zero to eight with or at risk for developing disabilities and their families benefit from an integrated, seamless system of services and supports that is family centered, community based, and culturally competent. As a result of this system, children with disabilities will have their physical, mental, health, developmental, and learning needs met in order to reach their full potential.
Inclusion Online
http://www.edc.org/cgi-bin/urban/get/event2.html
You can click on any of the subject lines and read everything that was
Posted. Like reading a newsgroup, or the archives of a listserve.
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Koffee Klatch
Moms of adorable kids with Down syndrome meet once a month. This is a very informal meeting, where we get to know each other better, about our kids, and our lives.
Come join us on the first Thursday of every month at the Wildflower Bread Company, on the SW corner of 27th Ave and the Loop 101, at the north side of the parking lot in front of Target. The next meeting will be Thursday September 7th, at 7:00pm. And don't forget to bring pictures of your kids.
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In the Spotlight
Bryce Duane Coppinger was born August 13,1998. It was a day that would change
many lives and hearts forever.
In the two years he has been in our lives, it is amazing to me the impact this young child has made on myself as well as others. My whole outlook on life is much different than before. The trees are greener, the sky more blue, and the glow on my face alone could light up a starless night over the Atlantic.
Every morning I take Bryce into the bathroom and we say good morning in the mirror. As we are standing in front of the mirror I tell him how beautiful he is and to say hello to himself and every morning, he instead looks at me in the mirror, turns to me and wraps his arms around my neck and covers me with his sweet kisses. What a way to start the day! My Aunt often asks what it feels like to have someone love me so much, and I still cannot find the words to describe how my son makes me feel. Bryce has three older siblings and it would be expected that there would be slight jealousy from the attention he receives. Not in our house. I can honestly say my three other children love their brother and protect him like a mamma bear protects her cubs.
One time in particular comes to mind that just shows how much they love him. I was getting a portrait of all four children and we all know how easy that is. The photographer centered the three children and everyone was told to hold real still. As I placed Bryce in the middle of the trio they all instantaneously moved to Bryce and gave him a kiss on the forehead. It was funny to me, not to the photographer. I only wished she would have snapped the photo. That day made me a very proud mother.
Knowing the love that is shared and how much he has changed our lives makes the future look that much brighter. Bryce Coppinger is a loved child and I thank God everyday for blessing me and my family with such a precious boy. I truly feel as though I am the luckiest mother in the world.
As I say to everyone, spend just five minutes with my son and your life too will be changed forever.
Bryce's mom, Donna Coppinger
Would you like to see your child or adult with Down syndrome highlighted in an upcoming issue? call Kym at (480)814-7459.
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Sharing Down Syndrome Arizona Board Meeting
Our next board meeting will be Thursday, August 26th from 9:00 am to 10:00 am.
These meetings are open to the public. If you'd like to attend please call Lori at (480)752-0995. Remember: “decisions are made by those who show up”.
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Welcome New Babies
Tyler Nichole Ewing 4/13/2000
Parents: Donald and Joann Ewing
Serenity Divine Nixon March/2000
Parents: Reyna Luna & Steven Nixon
Tyler Jacob Mayo 3/24/2000
Parents: Mindy & Mark Mayo
Ryan Jacob Tardibuono 5/24/2000
Parents: Louanne & Charlie
Nora Lopez 6/8/2000
Parents: Rosa Lopez
Lindsey Ann Lehr 6/13/2000
Parents: Sharon Hamilton & Todd Lehr
Michael John Frecking 6/22/2000
Parents: Jennifer & Mike Frecking
John William Rood 6/23/2000
Parents: Wendy & John Rood
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Southwest Conference on Special Education
September 22-23, 2000 - At the Marriot Airport Hotel in Phoenix, Arizona. This is a conference, geared to parents, about special education. There will be 19 different seminars, and the keynote speaker will be Reed Martin.
For more information or to request a registration form contact: Arizona Center for Disability Law at (602) 274-6287 or (800) 927-2260.
* Scholarships available from ACDL.
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PCV Vaccine (Prevnar™)
American Home Products (NYSE: AHP) announced that its vaccine Prevnar™ has been included in the federal government's Vaccines for Children program (VFC). Based on this vote all VFC-eligible children up to age five will have access to Prevnar™.
Earlier this month the American Academy of Pediatrics issued its own recommendations for the routine use of Prevnar™ in all children up to age two and in other at-risk children up to age five. Similar recommendations were made previously by the American Academy of Family Physicians.
The vaccine, pneumococcal 7-valent conjugate vaccine (diphtheria CRM197 protein), is marketed by Wyeth Lederle Vaccines, a unit of Wyeth-Ayerst Laboratories, the pharmaceutical division of American Home Products Corporation. Prevnar™ is now available in physicians' offices and will be available through the VFC program later this year.
In the U.S. there are about 16,000 cases of pneumococcal bacteremia (bloodstream infection) and 1,400 cases of pneumococcal meningitis each year among children under age five. Children who develop pneumococcal meningitis can die or be left with neurological damage including impaired vision, hearing loss, paralysis problems and mental retardation.
Prevnar™ targets the seven serotypes (strains) of pneumococcus that cause up to 80 percent of all pneumococcal invasive disease in U.S. children under six years old. These serotypes are also among the most resistant to the antibiotics traditionally used to treat pneumococcal infections.
Specifically, ACIP recommendations call for immunization of all children up to 24 months of age and all children from 24 to 59 months who are at higher risk of developing pneumococcal disease because their immune systems are compromised due to underlying illness or medical condition.
'The actual name is Pneumococcal Conjugate Vaccine, or PCV. It's been recommended for all children under 2 years of age, and for high-risk children between the ages of 2 and 5 years. I stronglyrecommend it for children with DS 5 years of age and younger. It's best against the meningitis and pneumonia caused by the Pneumococcus bacteria, but it may have smaller effects against ear infections and sinus infections in certain groups of children.' said Dr. Len Leshin, M.D., F.A.A.P. ?
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From my heart to yours…
My Dearest Friends,
I wanted to share this song with you because it speaks to my heart.
“Sometimes Miracles Hide”
by Bruce Carroll
(song and book / Howard Publishing)
They were excited; it was coming to be,
Two people so in love, and now soon there would be three.
For many years they've planned it, now it would soon be true.
She was pickin' out the pink clothes, he was looking at the blue.
The call came unexpected, the doctor had bad news.
Some tests came back, and things weren't right, said
“You're gonna have to choose.” “I'll wait a week for your decision”
Then the words cut like a knife, “I'm sure everyone will understand
if you want to end it's life.”
Though they were badly shaken, they just had no choice,
'Cause they knew God creates no accidents,
and they were sure they heard his voice.
Saying, “Sometimes miracles hide”
and God will wrap some blessings in disguise.”
You may have to wait this lifetime,
to see the reasons with your eyes.
'Cause sometimes miracles hide.
It seemed before they knew it, the appointed day arrived.
With eager apprehension, they could barely hold inside.
The first time they laid eyes on her, confirmed the doctor's fears,
But they held on to God's promise, cause they were sure they both could
hear.
That sometimes miracles hide, and God will wrap some blessings in
disguise
You may have to wait this lifetime to see the reasons with your eyes
'Cause sometimes miracles hide.
Though she was not like the other girls, they thought she was the best.
And through all thorough all the years of struggle, neither whispered one
regret.
And the first day that she started school and took her first bus ride,
They remembered the words that God had spoke,
and they both broke down and cried.
You see to them it did not matter why some things in life take place.
Cause they just knew the joy they felt when they'd look into her face.
They'd learned sometimes miracles hide.
They said God has wrapped our blessing in disguise.
And we may have to wait this lifetime to see the reasons with our eyes.
We know sometimes, miracles hide. We've learned sometimes miracles hide.
Sometimes Miracle's do hide. Could any of us have ever known, when our babies were born, how much we would love them? I just have to remember who I was the day my David was born, and know who I am today to know that God does work miracles.
Before I gave birth to David, a dear friend gave birth to her daughter. When I first saw her baby, I knew something was wrong, though I said nothing to my friend. Later as my neighbors and I discussed our concerns, I said innocently, “What if her baby has Down syndrome?” We each looked at one another with fear, thinking about how hard that would be. In time our friend did discover that her baby had a different genetic disability. At the birth of my son, I discovered that none of us are immune to the possibility of having a child with a disability.
I used to tease my friend Kris Holladay, telling her it was her fault David was born with Down syndrome. I'm pretty sure he was a perfect baby, until that one day….
I had met Kris five years before when her Kari and my Seth were just nine months old. Kari looked like a newborn. I didn't know what “Trisomey 18” was, but it was obvious to me her baby had a serious disability. I didn't express it to Kris, but I felt a mixture of love and pity for her, wondering how she ever coped. Though Kari never took a step or spoke a word in her life, Kris adored her. She didn't even act sad about her baby's disability. At the time I thought she was just being brave, and doing the best she could. I couldn't imagine having a child with a disability, but especially one whose life expectancy was so short. Kris never ceased to amaze me… even Kari's frequent seizures didn't seem to bother Kris.
Kris is a wild and crazy lady, and a dynamic teacher. I loved her from the moment I met her. She can teach the most spiritual lesson and have you feeling so much love for all the blessings in your life, and in the next minute, have you laughing so hard about how crazy our lives really are; that you almost wet your pants. (I shouldn't tell you that, should I?) Once, when I was about five months pregnant with David, I visited a Sunday school class where she was teaching. As I sat listening to Kris, I noticed Kari lying on a blanket on the floor. She began to fuss. I didn't know Kris that well, and felt kind of funny, yet I just couldn't let Kari lie there and whimper. I leaned over and scooped Kari up in my arms. She was as tall as any five-year old, though much lighter. I naturally began to rock her back and forth, and as I did she settled down. Soon I wasn't even listening to Kris any more, but instead was caught up in the moment of holding her sweet little girl.
As I looked into her beautiful blue eyes I felt something come over me. It was a powerful feeling. A mixture of, for the first time, not being afraid of Kari; and also a tiny glimpse of what it might feel like to love a child who was so different, and of having that love feel so good.
Before that time, when I saw mothers who had children with disabilities, I was sure they loved them; but I didn't know how. I thought it was more of devotion and duty, than of real love. As I held Kari in my arms, a warm feeling came over me, and a thought went through my mind. I found myself silently stating my feelings to her. In my thoughts I whispered, “I could love you”. As soon as that thought was silently spoken, I froze! I thought of my unborn baby and quickly added… “But I could never be the mom of a child with a disability.”, as if thinking it, would make it so. I hurried and laid Kari back on her blanket. The nervousness was still in my heart. What a close call!
Even though I now know there is no known cause for DS, and that it happens at the moment of conception, I'm pretty sure God must have heard my thoughts that day, and changed my David in the twinkling of an eye. I still tell Kris it's her fault for making me love Kari.
Kris and I share many things including the same faith as Latter-Day Saints. (Mormon) She is also a zany, wild and crazy lady with a great enthusiasm for life, who has a great sense of humor. But we came from very different backgrounds…she being born in our faith, and I converting at age 22. She was raised in a very stable home, and I grew up in a family that suffered the heart-breaking effects of alcoholism. Part of what I adore about Kris is how naïve she truly is. One time I was telling her how hard it was to grow up in an alcoholic home, and that my dad drank a “fifth of Vodka” a day. Kris, always being the one who tried to see the silver lining in every cloud replied, “Well Gina, that's pretty good. Just think how bad it would have been if he drank the whole bottle!” (She was serious.)
Even with the example of love I saw in Kris toward Kari, I still had to work through my feelings for David. I spent a lot of time with Kris and often silently marveled at how she could do it. Kari was unable to drink from a bottle, even at five years of age. So Kris would grind up the pills for her heart and seizure medication, in a heavy mortar. Then, she would mix that powder up with another liquid and pour it into Kari through a long plastic Foley tube that had been surgically connected to her tummy. As we talked, Kris would hold that tube up and feed Kari formula, carefully watching as the white liquid slowly disappeared. Kris would smile and coo at Kari with things like, “Oooh… that's good isn't it!”, as if Kari could answer back. Kris would joke with me that she wished she had a tube like Kari's so that she could grind up tacos and chocolate milk shakes and just pour them in!
Kris had unending patience with Kari, but for me there were more times than I care to confess in dealing with David, when I would look to the heavens with complete discouragement ask, ”And just what is it exactly You are trying to teach me? Patience? Well, it's not working!”
I was visiting Kris one day, and once again watched her take the rubber band off the tubing to unfold it and begin the routine that had become second nature to her. As we both watched the liquid slowly disappear I poured my heart out to Kris about my concerns with David's developmental delays. She smiled at me thoughtfully and said “You know Gina, there was a time I felt discouraged with Kari and her apparent lack of progress. It seemed to me she was unable to learn, and I felt frustrated at her for being such a 'slow learner'. But one day as I was feeling frustrated, trying to teach her something, a different feeling came to me. It told me that one-day, in the life to come, it will be Kari who will teach me… and I know I am a slow learner… so I just keep hoping when that time comes, she will be patient with me.” I didn't say anything because no words were needed. For the first time I was beginning to understand.
Miracles do happen, not only when God blesses you with a friend who understands, but in ways I didn't expect. If you know me, you will know that worrying is something I do well. One day, I was worrying about how I was going to raise the money to keep helping our parents. Unexpectedly, I heard in my mind a still, small voice that said simply, “I have been helping you for the past nine years. Do you think I am going to stop now?” I felt so foolish for even thinking it was me, or anyone else who made what we do at SDSA possible. I realized then that somehow a way would be provided. Then on Saturday July 22nd, we received a check from the Thunderbirds” for $20,000.00.
Each of us loves a child who is a hidden miracle. On July 11th, I attended a funeral for one such little girl. Her name was “Michelle Lynne Kelleher”. Though I do not know what it feels like to lose a child, I do know what it feels like to come so close, that everything you are, suddenly doesn't mean much anymore. I know what it is to yell at God, and tell him that no one, not even he, could love this baby more than you. I know what it is to threaten God saying if he takes your baby, you will never talk to him again. And then to barter, though you know God doesn't work that way, telling him you will do anything, begging for your baby's life. It feels like a part of you, dies as well. I know too, what it feels like be with your best friend while she watches her beloved daughter die.
“Kari Deann Holladay” was born on September 8, 1977 and she died on June 3, 1988. She didn't die, as predicted by the medical professionals, due to her disability in the first months of life. Maybe they believed that, but they forgot to tell Kari. She lived to be 10 ½ years old. Although her little body was unable to fight the chicken pox she had contracted, she sure gave it her best shot..
I guess I should have suspected that things were bad, when they air-vaced her to Phoenix Children's Hospital, but I didn't. When Kari died, it knocked the wind out of us all. My own heart hurt as I saw Kris' heart break, and there was nothing I could do about it.
Kris could not bear to leave her baby alone while she was sick in the hospital so she stayed night and day. It only stood to reason then, that there could be no other way, than to bring Kari home, after her little body was prepared for burial, to have her viewing at home. Kari looked beautiful dressed in her white gown. Around her neck she wore the tiny gold round locket her Aunt Karen had given her when she was born.. On the front were little rose buds and on the back, inscribed in the tiniest writing, was written “Kari”.
The tiny casket in the dining room didn't seem so strange at all. Kari would spend her last night with those who loved her most. During Kari's life she had many hospital stays, but no matter how bad things got, she had a way letting her mom know everything would be okay and making her smile. But on this day, Kari couldn't make her mom smile.
We each love something different or quirky about our kids, and for Kris it was Kari's index finger on her right hand. Kari always held that finger lifted up a bit and curved. (In a way, similar to how baby's with DS have their baby finger curve inward.)
Kris loved that little hand and would kiss it often. When Kari passed away Kris wanted everything to be perfect for her daughter, and it was.
As Kris looked at her little one, knowing that would be the last night she would ever see her daughter, she noticed Kari's little hand. She knew she had to have a remembrance of her. So she bought one of those kits that let you make plaster mold of your baby's hand or foot.
Through out Kari's short life she was surrounded by love and this night was no exception.. Kari had four doting aunts, Peggy, Lynnette, Deann (Dee Dee) and Karen. Peggy could not be there, but the other three came ot be there with Kris to give their love and support. They understood the need for Kris to make a mold of Kari's hand so all four worked together to help. One reading instructions, one trying to measure, one pouring and mixing. It was definitely a team effort when it came to trying to get Kari's little hand into the red cup without spilling some of the mixture into the casket or on to her dress. Kris tells that the four of them trying to do this was a “synchronized system of chaos.”
After finally getting Kari's hand into the red cup and after the designated number of minutes, Kris tried to pull the cup off. To her horror it wouldn't budge. At first, shear panic set in. The four of them looked at each other bewildered, not knowing what to do. As they stood there, the insanity of their situation started to take hold and soon the panic turned to humor. They tried to contain the giggles but it was hopeless. How were they ever going to explain this one?
At that moment they wanted to be reverent and respectful, but Kris said it was hopeless. It went from bad to worse as Kris began to imagine Kari peeking down at that moment from heaven, trying to explain to the angels, without much luck, that "Really... my mom loved me very much and was good to me while I was on earth."
Then Kris began to imagine what it would be like as well, when it would be her turn go to heaven,and the first thing she would see would be Kari running up to her, waving her hand still in that bright red cup, saying… “Mom, what in the world?…”.
It has been said that, "The entire sum of our existence is the magic of being needed by just one person." Vi Putnam, and that , "Sorrow is a fruit; God does not allow it to grow on a branch that is too weak to bear it. " Victor Hugo
So it is with a most thankful heart that I dedicate this newsletter to our beloved children who, though we don't know it at first, help us to know that we need them, far more than they need us. And for the sorrow as well, that we feel at our loss, because we realize that had we never been given the gift of knowing them, no matter how brief the time, how empty our lives would have been. Thank you for sharing with me your joy and your sorrow, and for helping me to see first-hand unconditional love.
I am not sure if my thoughts are heard in heaven, but if they are will you please send my love to some angel babies who never leave my thoughts and who continue to remind me that love is all there is.
Kari Deann Holladay… 9/8/77-6/3/88
beloved daughter of Kris & Hal Holladay
Hannah Marie Roy… 7/4/90-12/14/91
beloved daughter of Janet & Greg Roy
Cody Wayne Erickson… 12/19/90-12/27/91
beloved son of Tami & Doug Erickson
Courtney Amilia Lane… 6/4/96-9/1/96
beloved daughter of Irene & Dave Lane
Jessica Joy Felker… 12/18/84-2/14/93
beloved daughter of Kitty & Henry Felker
Alexandra Leigh Stapleton… 1-21-97-1/16/98
beloved daughter of Elke Schenburger & Bob Stapleton
Aaron Daniel Wallace… 7/3/84-3/4/97
beloved son of Terri Wallace & Danny Wallace
Garrison Jake Suman… 5/23/91-10/22/98
beloved son of Cori & Jon Suman
Braxton Matthew Huff… 12/6/98-1/19/00
beloved son of Shawnie & Kevin Huff
Michelle Lynne Kelleher… 9/2/94-7/14/00
beloved daughter of Laurie & Joe Kelleher
(Forgive me, for there are two children whose names escape me. One is a baby boy about four months old whose mom's name was Jane, the other a little eight-year girl named Jessica, whose mom's name was Rosa. They both passed away in 1991. Though I have lost touch with both their families, I can still see the faces of these precious children and they are in my mind and heart forever.)
"To live in this world, you must be able to do three things: To love what is mortal; To hold it against your bone knowing your own life depends upon it; And when the time comes to let it go, let it go." Mary Oliver.
Love,
David's Mom
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Family Opportunity Act S2274
The following is from a Memo from the Governor's Council on Developmental Disabilities.
The Family Opportunity Act is a bill that will benefit parents and families who have children with disabilities and special health care needs. This bill will allow states to be able to offer Medicaid coverage to children with disabilities and special heath care needs living in middle income families through a buy-in program. A time limited demonstration program will allow states to extend Medicaid coverage to children with potentially severe disabilities. The bill also provides funds to establish health information centers to assist and support families of children with disabilities and or special heath care needs.
There are currently 50 co-sponsors. Senator Kyl and Senator McCain have NOT signed on as co-sponsors.
It is imperative that we contact the Senators and urge their support of S2274. Tell the Senators that we need improved access to special heath care services. S2274 would allow us, as parents, to apply a premium for necessary Medicaid services for our children. Or you can write a short letter explaining “why your family needs Medicaid” Send your letters to National Parent Network on Disabilities, NPND and they will deliver the letters personally to the Senators' offices. (Please forward a copy of any correspondence to our office, GCDD)
NPND
1130 17th St, NW
Suite 400
Washington, D.C. 20036
e-mail: pmcgismith@aol.com
fax: (202)463-9403
Senator Jon Kyl (202)224-4521
fax (202)228-1239
Senator John McCain (202)224-2235
fax (202)228-2862
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President of SDSA - Gina Johnson (480) 926-6500
Vice-President - Lori Marquette (480)752-0995
Secretary - Shelba Burger(480)832-0888
Treasurer - Kay Bradshaw (480)830-4898
West Side Meetings Coordinator - Martha C. Vance (602) 547-9855
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Direct Tax-Deductible Contributions
All direct contributions to Sharing Down Syndrome Arizona are Tax-Deductible, and can be sent to:
Sharing Down Syndrome Arizona! Inc.
c/o Gina Johnson
425 E. Tremaine Ave.
Gilbert, AZ 85234
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New Guide for IEP
The U.S. Dept. of Education announced a new guide for Individualized Education Programs (IEPs). The guide is intended to help parents, teachers and schools to develop IEPs that are in compliance with the Individuals with Disabilities Education Act (IDEA). The 35-page booklet helps parents and those developing the IEPs to understand the federal law and its regulations. It also helps them distinguish between IEP requirements under the federal law and additional requirements established under state or local policies and procedures. Free copies are available from the Dept. of Education by calling 877-4-ED-PUBS or by visiting the web site at www.ed.gov/pubs/edpubs.html
This document is also available online at:
http://www.ed.gov/offices/OSERS
You Can Help us With a Piece of the Puzzle
Employers Matching Donations
Many corporations have a program called "Charitable Matching". Whatever amount that you donate to your favorite 501(3)(c) charity, (Hopefully "Sharing Down Syndrome Arizona"...) your corporation or company will match, and in some cases, double.
If you are unsure about the policies for your company, your Human Resource Department should be able to answer all of your questions. If your Company contributes to the United Way, you can earmark your donation with our name.
Amazon.com Contributes
We have become involved with the Associate Program of Amazon.com!
Through this exciting program anytime you purchase goods from Amazon.com through our SDSA website, we receive 15% (or up to $10 per item) off the money you spend. Great fundraiser for Sharing!
So, next time you want music, books, or other items that Amazon.com carries, log in to our website, www.psln.com/~sharing and from there log in to Amazon.com
Ongoing Garage Sale!
Save items that you would like to donate for our garage sale. We have already had two sales and will be resuming them in the fall (when it cools off). All proceedings from the sale go to Sharing Down Syndrome Arizona. Call Martha at (602)547-9855.
Volunteering
We are working on several projects that will fulfill our Mission Statement. There will be committees in charge of each project, you can contribute to Sharing Down Syndrome Arizona by volunteering in a committee.
United Way Contributions to United Way can be earmarked to Sharing Down Syndrome Arizona. United Way will forward your contribution to us.
FriendlyGifts.com
FriendlyGifts.com, a one-stop source for multiple lines in personal or corporate gift merchandise, has chosen SDSA as recipient of their charitable donation program.
As a part of the donation program, FriendlyGifts.Com will donate 5% of every item purchased through the Company's website directly to Sharing Down Syndrome Arizona.
FriendlyGifts.Com offers an unique and distinctive collection of small gift items such as candles, lanterns, wind chimes, picture frames, plant stakes-wall decorations, candle accessories and other miscellaneous gift items at discount prices.
Support our Buddy Walk by volunteering, serving in one of the organizing committees, getting sponsors, inviting everyone you know and most important by attending.
US DEPT OF EDUCATION
LAUNCHES NEW WEB SITE
The U.S. Department of Education announced a new Web site to showcase the government's efforts to help America's infants and pre-schoolers with disabilities and their families.
The site, launched today at www.fed-icc.org, will provide a useful storehouse of information for parents of children with disabilities, focusing on the efforts of the Federal Interagency Coordinating Council (FICC). The council facilitates federal, state and local activities related to serving infants, toddlers, and preschoolers, from birth through age 5, who receive services under the Individuals with Disabilities Education Act (IDEA), as well as other federally funded programs such as health care, child care and social services.
"We are excited to share how federal agencies are working collaboratively to improve services for children with disabilities and their families," said Judith E. Heumann, FICC chair and assistant secretary for the office of special education and rehabilitative services. "This site offers parents, in particular, easy access to disability-related information and contacts that can make a difference in the lives of their children."
The FICC is an advising body to cabinet secretaries from the departments of education, health and human services, agriculture, defense, and interior, as well as to the commissioner of the Social Security Administration.
Some highlights:
For parents, the Web site is user-friendly and easily navigable offering access to names and numbers of people throughout the government who can help answer questions about children and disability issues. It also provides a means for parents to contact and communicate with FICC parent-member representatives. ?For states, the site showcases current federal efforts that impact state programs. States also will be able to use this site as a forum through which to share issues of importance with council representatives.
For government agencies, the Web project promotes better understanding of how each federal program helps young children and how government offices can work together collaboratively. The council makes recommendations to those cabinet secretaries working to expand opportunities to people with disabilities, including suggestions to eliminate barriers to interagency programs. In addition, in order to support coordination efforts among states, the panel advises on the coordination of technical assistance and dissemination of information about promising practices and effective program coordination strategies.
The FICC meets quarterly in Washington, D.C., and its meetings are open and accessible to the public. Its membership includes representatives from:
17 program offices across six federal agencies;
State program representatives;
Parents of children with disabilities; and
Others, as deemed necessary by the secretary of education
I think it's safe to say that most of us were either misinformed or ignorant about Down syndrome, before our children with Down syndrome were born. For me that was a little under 4 years ago, and it is incredible how much I've learned on the subject already. I could've gotten a doctorate degree by now!
Now that we know a lot more we forget that other people, who have no direct contact with a person with Down syndrome, are still in the dark. We need to educate these people, tell them a little of what we know about Down syndrome. Especially those who are going to be interacting with our children on a daily basis, like: childcare staff, school staff, classmates and their parents. Remember that some people, out of ignorance, are afraid of Down syndrome. It is also important to let them know about our child specifically.
I know of at least one mom who goes to her child's school at the beginning of the year and talks to her new class about how and why is her child different, and what it means to have Down syndrome. Another good idea is to send letters to the parents of all the classmates, so that they can explain to their kids. Here is an example of such letter:
Dear Parents,
Many of your children have had the opportunity to meet and play with our daughter Sara. As your children become older and wiser they may begin to notice that there is something different about Sara, and to question you about her and ask why she is different. Therefore, we felt it may be helpful for us to provide information about Sara and her disability. Sara has a chromosomal disorder called Down Syndrome. Down Syndrome affects development in all areas: size, growth, and mental abilities to name a few.
Nearly all individuals with Down Syndrome have mental delays although the delays are most frequently mild. Down Syndrome does not reduce the ability for an individual to learn, it simply slows down the learning process. With early education and medical intervention children with Down Syndrome are learning and experiencing more and more every day.
A simple explanation of Down Syndrome for children would be:
Sara has something called Down Syndrome. It is not a sickness and you cannot catch it from her. Because she has this special thing it is a little harder for her to do some things that might be easy for you to do. The best thing you can do for Sara is to help her learn to do all the wonderful things you are so good at doing and to be her friend.
We would also like to provide you with some basic information specifically about Sara. Sara is a very lovable and affectionate little girl who has feelings and emotions like any other eight year old child. Her mental impairment is in the mild range. As her parents we expect many great accomplishments from her in the future. Sara's greatest delay is in speech and language. She is becoming more verbal and will continue to develop. We would like to ask parents to emphasize to their children that Sara is not someone to be afraid of or to avoid, but someone who is special in her own way - just like they are. Thank you for your attention. ~
Martha C. Vance
Informing People About Down Syndrome
“New Parent Support” Committee
So many of us felt so alone when our baby was diagnosed with DS. Even though well meaning friends and family might have tried, often the first words out of their mouth when they find our baby had a disability was "I'm sorry."
Only other parents in our same situation could really feel what we were feeling. I know for me personally it was a great experience to meet Carla and John VanRiper, and their darling son, Timmy, through "Raising Special Kids". They became our "Pilot Parents" and our friends. They were always there to coo and cuddle our precious new son Jackson.
I look back on those first get-togethers with Carla and John with much affection. This committee is very important as we need to "be there" for one another, and it can be very rewarding.
The SDSA Board will be holding a "New Parent Support" workshop for those of you interested in being on the committee and visiting new parents.
This workshop/talk session is very important. During the workshop we will discuss the "do's and "don'ts" during a home visit, explaining the "Complimentary Gift Package" to the new family, and just being there for them. We ask for a one year commitment, and at least one home visit with the new family. We will call committee members as the need arises, trying to match up parents who live in relatively close proximity. We will try not to burden any one family! We also ask that each committee member report back to the "Committee Chairperson" after their visit. As each situation warrants, we hope that you will be available keep tabs on the new family as their baby grows into the special person they will become!
The workshop will be held on Saturday, August 26, 2000 from 10:00 am to 12:00 pm. At 201 W. Guadalupe, Suite 102, which is Dr. Curt Johnson's office on the SW corner of Guadalupe and Gilbert Road, in Gilbert.
Please email or call Lori Marquette, Lorimarque@aol.com, (480)752-0995 if you are interested in being on the committee and to RSVP for the workshop. Lori will be out of town for a little while, so if you have any specific questions and cannot e-mail Lori, you can call Gina Johnson at (480)926-6500.
Public Awareness Campaign
"Sharing Down Syndrome Arizona!, Inc. is beginning a public awareness campaign. Our goal is to reach as many families as possible. We are doing this through contact with early intervention programs, DDD, therapy services, media, etc.
If you have contact with an agency you think should know about our organization, please let me know so we can make a contact, send them our NEW great looking brochures and make sure SDSA is a resource to the families they service. The service we can render to others is only limited by our reach. Working together we can reach many.
Thanks for helping get the word out! Velma Lisa Leftwich, Community Relations Coordinator, (602) 437-4846.
What is the AzEIP Management Team and Why Should I Know or Care?
The Arizona Early Intervention Program (AzEIP) is the statewide system of services and support for families of infants and toddlers, birth to 3 years of age, with disabilities or developmental delays. The Arizona Department of Economic Security (DES/AzEIP) is the Arizona's lead agency that works together with the Division of Developmental Disabilities (DDD), Arizona Department of Health Services, the Arizona State Schools for the Deaf and the Blind, the Arizona Department of Education, AHCCCS and other community resources to implement the Arizona Early Intervention Program. The Governor appoints an Interagency Coordinating Council (ICC) to advise and assist DES/AzEIP in its responsibilities. The ICC includes parents and family members, state agency representatives, private providers, and legislators.
AzEIP focuses on a family centered philosophy. Families know best what their children need and what the family needs. AzEIP recognizes that the family is the constant in a child's life and that service systems and personnel must support, respect, encourage and enhance the strength and competence of the family.
AzEIP sponsors six Local Management Teams throughout Arizona that are responsible for the local implementation of the policies, procedures and services included in the early intervention system and for helping ensure that it is family centered. Management Team members include state agency designated staff representing the participating agencies at the community level, family members, providers of early intervention services, advocates for children and families, and any other interested community members. Management Teams also advise and assist DES and the state Interagency Coordinating Council (ICC) on the implementation of AzEIP. In Maricopa County, this group is called the “Maricopa Interagency Management Team.” The Team believes that it is most important to have parents and family members as active participants at all the meetings, and would like to expand the number of family members. Here is a place you will be listened to! Regular meetings are held in the even months on the second Monday from 1:00 to 4:00 pm at various locations throughout the Valley. (February, April, June, August, and October). In December we have a Holiday luncheon with a program speaker. We also have committees and task groups that usually meet during the odd months to work on specific projects or goals to improve the early intervention services and supports in Maricopa County. Parents and family members are a vital part of all these groups.
To learn more about the activities of the Maricopa Interagency Management Team or to receive agendas for upcoming meetings please call Chris Mahler, AzEIP Program Coordinator for Maricopa County, at 602-237-3384. If you live outside Maricopa County, please call DES/AzEIP for the name of the AzEIP Program Coordinator/Management Team contact for your local area. You may contact the DES/AzEIP office at (602) 532-9960, or toll-free within Arizona at 1-888-439-5609.
We look forward to hearing from you! When Parents Lead, Leaders Follow! ~ ~ ~
It's a new look for the Buddy Walk of Central Arizona and It's full speed ahead in the planning! We'd love to have your input and have scheduled our next meeting for SATURDAY AUGUST 19TH AT 10 AM. We hope that the new time will allow for more people to attend. Come learn what we've accomplished so far and share your ideas for the Buddy Walk.
We are striving to make the Buddy Walk of Central Arizona one of the premier fundraising (and FUN!) events of 2000 and YOUR involvement makes a difference!
We are in particular need of people with experience with silent auctions, sponsorship solicitation, entertainment expertise or contacts, and people with loads of enthusiasm and creativity to share!
We have information available If your business is interested in becoming a sponsor for the event. Wouldn't it be great to see your company's name on the back of the official Buddy Walk 2000 T-shirt? Or what about a donation for our silent auction? Let us know! We'll send you everything you need to know and then pick up your donation. It couldn't be easier!
If you truly cannot volunteer, and only you can make that decision, please make sure to mark SATURDAY, OCTOBER 28TH with a big red star, bring your friends and family and join us at 9:00 AM at ASU in Tempe for the one-mile walk and post-walk festivities! You're in for the time of your life!
Please feel free to call or email me at with any questions.
Maureen Mills Buddy Walk Chairperson 480-704-0809 or azbuddywalk@yahoo.com
Buddy Walk Website
Visit the Buddy Walk website where you can find details of the Buddy Walk (where, when, etc.), a registration page with a link to a printable registration form, volunteer and sponsor contact information, and press release. Information will be added to these pages as it becomes available. You can link to this website through Sharing's website at:
www.psln.com/~sharing.
We Need Help for Entertainment for the Buddy Walk
From Velma Lisa Leftwich: I'm working on entertainment for the Buddy Walk. If you have any suggestions for activities or know of someone who has a great activity and would be willing to donate the use of it for the post-walk activities from 10 am to 2 pm, please let me know. Thanks, Velma Lisa (602)437-4846.
East Side Playgroup
We are going to meet every Wednesday at 3:30pm at the Mountain Park Ranch Community Pool. On 40th St. And Ranch Circle South in Ahwahtukee from now until school starts. Then starting Wednesday August 23, we will meet at 2:00pm till 4:00 at my house every other week. For more information call Laurie Neville at (480)704-1409.
Spreading the Word
Another very important way that you can help our efforts,
is by spreading the word about us to families that you meet
through therapy, school, doctor's office, etc. Let them know
there is an organization that strives to help, tell them about
our monthly newsletter and how to contact us.
Sharing News is a free newsletter produced by
Sharing Down Syndrome Arizona, Inc. monthly.
Sharing Down Syndrome Arizona! Inc. is a non-profit agency.
We appreciate your support, donations can be send to:
Sharing Down Syndrome Arizona! Inc.
c/o Gina Johnson
425 E. Tremaine Ave.
Gilbert, AZ 85234
(480) 926-6500
You can also contribute through United Way by earmarking your donation with our address and phone # above.