~Sharing News~
Newsletter of Sharing Down Syndrome Arizona
October, 2000
Volume 9, Issue #10 - Published Monthly
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In The Spotlight
Meet Sam Brumand
Sam, also known as “Sam-I-am” after the character in Green Eggs and Ham by Dr. Seuss, was born 6/4/93 in Columbus, OH. He is 7 years old and attends Kyrene Manitas School in Tempe. Sam's Mom, Mary, is a pharmacist and is from Connecticut. His “Baba”, Darius is from Iran and is a Systems Engineer. Sam's favorite person in the world is his 9 year-old sister, Jaleila whom he calls “Jal”. Jal is a 4th grader and also attends Kyrene Manitas School. Jal says that it's fun having Sam for a brother because he laughs more than other kids do.
Sam loves to travel. In March he went to Iran to visit many of his relatives. He still often talks about his uncle and aunt who live there. He enjoyed the trip and especially loved flying in a plane where he had his own personal TV screen with the Disney channel. In June he again flew in a plane to Connecticut to visit his Grandma and Grandpa McEvoy. In August, Sam went with his family on vacation to Dillon, Colorado. He enjoyed the mountains, the alpine slide and feeding the ducks at a pond. He also asked his Baba to make a fire in the fireplace every night.
Sam loves to watch videos with Barney and Disney being his favorites. He enjoys music and dancing. He loves animals and his favorite is the elephant. He calls them “trunks”. He really enjoys going to the zoo. Sam is also starting to play computer games. His favorite right now is Tarzan by Disney. Sam is proud to have his own Phoenix Library Card. He borrows books and videos every week and would go to the library every day if he could.
Sam's Grandma McEvoy defines success as happiness and since Sam is the happiest child she has ever known, she believes that he is already successful in his life.
Sam looks forward to loving, living, and learning for the many years ahead.
ODE TO MY SAM
EVERY DAY, ANOTHER WAY, HE SHOWS ME HOW HE'S SPECIAL
HIS SMILE, HIS LAUGH, HIS WAVING HAND
ALL SEEM TO SHOW ME IT'S IN GOD'S PLAN
HIS MANNER OF GIVING LOVE SO OPENLY
AND REACHING OUT TO OTHERS
AS IF TO SAY, IN SUCH A SIMPLE WAY...
"WE HAVE TO LOVE EACH OTHER."
WE ARE ALL DIFFERENT,IT IS TRUE
SOME BIG, SOME SMALL
SOME SHORT, SOME TALL
BUT WE MUST LIVE TOGETHER
IT'S ALWAYS FIGHT FOR FLIGHT OR RIGHT OR MIGHT
BUT WHY NOT JUST ACCEPTANCE
WE HAVE NOT FOUND THE FLAWLESS GENES
OR HOW TO REACH PERFECTION
WHEN CHROMOSOMES ARE NOT JUST RIGHT
WE WISH WE COULD CORRECT THEM
BUT NOW I'VE FOUND THROUGH MY DEAR SAM
I MUST BE HAPPY AS I AM
BECAUSE CHROMOSOMES DON'T CHANGE
AND IF HE DOES HIS BEST
HE WILL BEAT THE REST
IF HE JUST KEEP THAT SMILE
AS HE STRUGGLES STEP BY STEP THROUGH THAT LAST LONG MILE
THEN SEES HIS SHADOW TRIUMPHANTLY CAST
AS HE CROSSES THE FINISH LINE DEAD LAST
MARY BRUMAND
JUNE 1995
Mary Brumand is Sam's mom. We will be publishing more poems she has written in latter newsletters.
Would you like to see your child or adult with Down syndrome
highlighted in an upcoming issue? call Kym at (480)814-7459.
Don't be shy.
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Sometimes friends will do something that is really touching. A colleague of my husband has a nice gift shop in Benicia, California called "The Nest Egg".
He and his wife know that I am involved with SDSA, and decided they wanted to help in some way. He emailed me and asked if we could use some Beanie Babies and Attic Treasure animals. I said sure! They sent me a large boxful ! I think that we may put some of them in the silent auction at the Buddy Walk and give some away in the "New Parent Gifts". My other thought is to start a little care packet for our open heart patients at PCH. What do you think? If you have any ideas, email or call me.
Lori Marquette 480-752-0995, Lorimarque@aol.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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El contacto de habla hispana para nuestro grupo de apoyo a los padres “Sharing” es Martha Vance. La puedes llamar al (602)547-9855
Hay un grupo(Español) que se reune en Phoenix todos los últimos Miércoles del mes. Para mayor información Llame a Julie al 623/465-2778
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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 Klutch
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, we talk 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, (in front of Target). Our next meeting will be Thursday November 2nd at 7:00 pm. For any questions contact Cathy at 623-465-2778.
Bring pictures!
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SDSA Board Meeting
Our board meetings are open to all. For information on our next meeting call Lori Marquette at (480)752-0995.
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From my heart to yours…
My Dearest Friends,
October is National Down Syndrome Awareness month and what a wonderful time to celebrate our precious children who only know how to love. Our children are so much like typical children and yet so different in the most wonderful way. They do not know malice or prejudice. How much I need to learn from them. They are the butterflies of life.
“A butterfly is not a mole but it is not something any butterfly should regret.” Albert Einstein
Recently I've learned that the most tender and sacred lessons of the heart are only given to us as glimpses; sometimes just brief enough to teach us what we need to know. Sometimes they warm our hearts… and other times they are more painful than we can endure, but they teach us nonetheless.
A Lesson in Life
Sometimes people come into your life and you know right away that they were meant to be there. They serve some sort of purpose, teach you a lesson or help figure out who you are, or who you want to become. You never know who these people may be; your roommate, neighbor, professor, long lost friend, lover or even a complete stranger who, when you lock your eyes with them, you know that very moment that they will affect your life in some profound way.
And sometimes things happen to you and at the time they may seem horrible, painful, and unfair, but in reflection you realize that without overcoming those obstacles you would have never realized your potential, strength, will power, or heart.
Everything happens for a reason. Nothing happens by chance or by means of good or bad luck. Illness, injury, love, lost moments of true greatness and sheer stupidity all occur to test the limits of your soul.
Without these small tests, if they be events, illnesses or relationships, life would be like a smoothly paved, straight, flat road to no where. Safe and comfortable but dull and utterly pointless. The people you meet who affect your life and the successes and downfalls you experience create who you are, and even the bad experience can be learned from. In fact, they are probably the most poignant and important ones.
If someone hurts you, betrays you or breaks your heart, forgive them, for they have helped you learn about trust and the importance of being cautious to whom you open your heart. If someone loves you, love them back unconditionally, not only because they love you, but because they are teaching you to love and opening your heart and eyes to things you would have never seen or felt without them.
Make every day count. Appreciate every moment and take from it everything that you possibly can, for you may never be able to experience it again.
Talk to people you have never talked to before, and actually listen. Let yourself fall in love, break free and set your sights high. Hold your head up because you have every right to. Tell yourself you are a great individual and believe in yourself, for if you don't believe in yourself, no one else will believe in you either. You can make of your life anything you wish. Create your own life and then go out and live it."
Author unknown
Albert Einstein also said: “Small is the number of them that see with their own eyes and feel with their own hearts.”
Have you noticed how our children are included in that small number? There is nothing that fills my heart more than to be a part of the innocence that encircles my son's life. David has no hidden agenda. His emotions are genuine and real, even if, at times they are awkward or inconvenient for me. One time when David was assigned a new speech therapist, I was trying to be sweet to her to help David accept the change... but David held his ground by firmly saying, “No!, Holly!” And so we beat the bushes until we found Holly again.
I believe it is not in error that our children have been sent to us, no matter how inadequate we may feel as their parent. I have often heard medical professionals argue, “benefits vs. burden” regarding how having a child with a disability will surely be hard on families. They worry and question what kind of “quality of life” our children or we can truly have, if our child has a disability.
How silly they are. Don't they know that who they see when we first learn of our child's diagnosis is not who we really are. It takes time for God to refine our hearts and help us to see things as they really are. I love being “David's Mom”. It's not because my heart hasn't been trampled by thoughtless remarks from others as they awkwardly try to deal with my son and with me. Nor is it because I have not felt the tears that come as I struggle to be the best mom I can, all the while feeling like I am failing miserably.
Yet through it all, I know God is blessing me and teaching me… and he is doing it through what the world would consider a most unlikely teacher.
For most of David's life people have been incredibly kind to him and to me. But when hurtful times come, as they will, it is as if I wear my heart on my sleeve and it hurts all the more.
A few weeks ago David insisted on going to our Gilbert High football game, and attending the dance as well. After the game we headed for the dance in the cafeteria; David pointed to the opposite direction while saying: “GO!”, to Curt and me (which translates to, “No other parents are here, so go away!). Of course Curt and I waited and then smuggled ourselves in to watch from the second floor, hoping not to be noticed.
We watched as David danced his heart out and had a great time. David imitates well, that is part of the reason I have insisted he be educated in a regular education setting with what I lovingly call 'severely normal' peers.
As I stood there watching my son, I saw a boy, unfamiliar to me, go up to David, trying to get him to dance in the most vulgar and obscene way. Tears filled my eyes and anger filled my heart as I raced down the stairs to intercede. I grabbed that tall teenage boy by his arm with a mixture of hurt and anger, looked into his eyes and asked, “Is this what you teach my son? Is it appropriate?” I wanted to say something more profound but this was the best I could do.
That boy hurried off to blend in the crowd and I was left feeling more alone than ever. I turned to David only to find him totally humiliated. He, of course, did not know the boy was making fun of him, all he knew was that his mom embarrassed him, and he handled it in the only way he knew how. With a hurt that was obvious, he slid down to the floor sitting with his legs crossed, and put his hands in his face. It was all I could do not to cry with him. I finally was able to get him to sit on a chair at the side, but no amount of coaxing could get him back on the dance floor.
Oh, how I would have liked to wave a magic wand at that moment and make the hurt go away… but I had no wand to wave. Slowly, I returned to my 'post' to guard my son. As I walked back up the stairs my feet felt almost as heavy as my heart.
At that moment my heart ached for all the injustices in the world, especially regarding our children. Curt looked at me with tender eyes but knew I could not answer even if he asked how I was doing. If I did answer it would have been to say…”This is so much harder than I ever thought it would be.”
I was not prepared for that unexpected hurt. At David's birth, when I learned of his disability, I wanted to make things better. I knew that I could not change David so I decided I would change the world. It might take me a little longer than I thought.
At that moment I wished we had never come. I was thankful it was dark so others could not see my tears. It was then that I saw her. I didn't know who she was, but I saw her walk up to David and speak to him. Then next thing I knew he was slow dancing with her and with the happiest smile I've ever seen. He only came up to her shoulders, but she was beautiful and he knew it. In my thoughts I softly whispered to her, “God Bless you.”
The next day my mind reflected on all that had happened the night before. I loved that gentle stranger who had reached out to my son, but still my heart was aching wondering why that boy would deliberately be so cruel to my innocent son. The phone rang and it was Melanie LeSeuer, a dear friend whom David adores. She had not been at the school dance and had no idea of what I was feeling at that moment. When she asked, “Can David go to the church dance with me and my friends tonight?” I could hardly contain my feelings. There it was again, that lump that comes to my throat that makes it hard for me to speak. I handed David the phone to see not only the delight in his eyes, but heard it in his voice as he said, “YES!”.
After David left for the dance that night, I still reflected on that other boy. I still could not understand why it had happened. Then I thought of another thoughtless young five-year old child who had been even more cruel, 43 years before, to a young girl who had a disability. It was that experience that God choose to teach that thoughtless girl a lesson she would never forget. She now signs herself...
“Love, David's Mom”
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Welcome New Babies
Conner Elijah Glen 8/8/2000
Parents: Jennifer & Ed Glen
Alexis Chacon 9/19/2000
Parents: Rosa & German Chacon
Teila Camille Jarman 4/5/2000
Parents: Tecia & Eddie Jarman
Issac Matthew Shepherd 9/22/2000
Parents: Jaymie & Matthew Shepherd
Katheryn Grace Bornost 9/15/2000
Parents: Lesa & Richard Bornost
Emma Elizabeth Shores
Parents: Andrea & Alex shores
Avery Rose Johnson 3/3/2000
Parents: Kelly Johnson
Other Families Joining us are:
Morgan Sierra Williams 3/21/1998
Parents: Shannon & Dustin Williams
Jared Alan 7/12/1985
Parents: Marilyn & Mike Clark
Holly Margaret Solene 7/12/2000
Parents: Peggy & Ron Solene
Rayna Macias 9/12/2000-9/22/2000
Parents: Lorena Macias & Eric Tierney
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Kids out of Surgery
Christina Clapp, she had a complicated heart surgery, but is now making a speedy recovery at home.
CONGRATULATIONS!
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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.
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October 26th, 2000
Managing Behaviors-Sheri Dollin, M.Ed, Kym Marshall and Kay Stockdale
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East Side Playgroup
We are going to meet every other Thursday 19th, from 9:00 to 11:00 am at 14436 S 34th Way, Ahwahtukee. For more information call Laurie Neville at (480)704-1409.
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West valley
Thursday October 26th, 7:00pm at City of Peoria Community Service Building, 8335 W Jefferson, Peoria, AZ
The Cross streets are Peoria Ave and 83rd Ave. Jefferson is 2 blocks south of Peoria Ave.
Contact Martha Vance 602/547-9855
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Whispering Hope Ranch
It's a miracle of bonding and mutual healing between challenged animals and humans that Diane Reid witnesses nearly daily at her Whispering Hope Ranch, just under the Mogollon Rim about 25 miles east of Payson, AZ. The nearly 40 acre grassy spread is where she keeps her collection of formerly abandoned or unwanted animals that find themselves safe and loved in her care. For the past 2 years, Reid has been inviting people, who through emotional or physical circumstances of their own, need the type of unconditional love and comfort that animals can provide. Research has shown that interaction with animals can enhance people's immune systems, lower their blood pressure and produce general sign of calming. Whispering Hope Ranch is a wonderful place to take your family. Please call ahead to make your reservation. Many families come up for the day to enjoy the peaceful surroundings.
Testimonial from one of our SDSA families: What a great place to bring your family. It is just the place to leave your worries behind. They gave us a tour in a golf cart and told many heart warming stories. At the end we stopped and let the kids play at a very nice playground. They had a place to have a picnic and lot of spots to just sit and marvel at the beauty around you.
My children ages 9,6,5, and 19 months each had a wonderful time and have already asked to go back. The ranch mission statement is "to provide a place of beauty and serenity where animals interact with people to heal the body, mind, and spirit." Whispering Hope Ranch did just that and left my family with a moment we will always remember.
Jozette Stowasser, Chandler
To Learn more about Whispering Hope Ranch (they are a non-profit corporation) you can contact them at:
HC2 Box 162-V, Payson, AZ. 85541
480-990-9795 or 1-877-478-3339
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Helping Your Child Transition from Bottle or Breast to Cup and Straw
Children with Down syndrome often resist moving from the bottle or breast to a cup and straw, when actually this transition can be the best thing for them.
Bottle and breast drinking keeps your child's mouth at an immature skill level. A cup and straw make your child work harder, thereby strengthening oral (mouth) skills. Better oral skills can influence how well your child eats, speaks, and makes facial expressions. Children with Down syndrome need extra help in all of these mouth, face, eating, and speech activities.
This article looks at some of the oral motor characteristics of children with Down syndrome and why making the transition to cup and straw is important for them.
ORAL MOTOR SKILLS
Children with Down syndrome have low muscle tone. This causes weaker sucking, swallowing and chewing patterns and makes them slower to get the mature oral skills needed for efficient feeding.
An infant sucking on a bottle or breast at first uses an in-and-out tongue patterns while sucking, instead of working on the more mature up-and-down pattern.
Also because the lips and cheeks are weaker, they don't suck very strongly. This may cause the child to lose liquid at the corners of the lips and fatigue more readily.
Children with low tone often hold their mouths in a partially open position because jaw control is delayed. When you try to swallow with your lips apart, the swallow is strained, and the liquid can be pushed out. Combine this with an in-and-out tongue pattern, and there is even more liquid loss.
SKILLS GAINED WITH CUP DRINKING
As a child learns to drink from a cup, these jaw, cheek, lip and tongue skills are strengthened.
Children must increase their jaw control in order to hold the cup steady for drinking. To swallow from a cup, they have to direct liquid from the front to back of their mouths without the guidance of a nipple.
In cup drinking, the tongue must change from the immature in-and-out action to the more mature up-and-down action. The cup gives children an opportunity to learn this action, whereas the bottle continues to allow the less mature pattern.
Lip control must improve for cup drinking. The lips can rest on a bottle nipple without strong closure, because the base of the nipple touches the lips and helps close the mouth. In cup drinking, the lips must draw in at the corners and pull liquid in, directing into the center of the mouth.
SKILLS GAINED WITH STRAW DRINKING
Still other skills are refined when children learn to drink from a straw. The jaw must be controlled in one position for straw sucking. The center of the lips must pull in the liquid in a more dramatic way than was done with the bottle or the cup. The sides of the lips must tighten to prevent liquid loss out the side of the mouth. The tongue must direct the liquid from the front to the back of the mouth.
WHAT CAN BE DONE?
Sit more upright. An upright position gets your child used to “working” the mouth muscles during drinking, rather than letting gravity do all the work in a lying-down position. When your child is still taking liquids from a bottle, try using a bottle straw. This straw and plunger is inserted inside the nipple and requires your child to sit upright with a tucked chin during drinking. If your child leans the head back, the liquid no longer comes out of the straw. Your child quickly learns to tuck the chin and drink from a more upright position.
Preparation. Do oral “wake-up” activities such as brisk face wiping or rubbing with a cool washcloth before trying the cup or the straw. Have your child drink colder liquids and drink in a more upright fashion.
Drink purees. Let children drink strained or pureed foods from a cup in addition to eating them from a spoon. Use a small-mouthed cup to give mouthfuls as you would use a spoon. To make the transition easier, start with tastes that you know your child already likes to eat from a spoon. If necessary, try alternating tastes from the spoon and the cup. Gradually keep the cup there for longer periods, so that two, three, or four sips can be taken at a time
Gradually thin the liquids. Thinner liquids from a cup are harder to handle because they move faster and require faster responses. Be sure to thin out the liquids slowly so your child has a chance to gain the skills necessary for control.
Present the straw. Drink from a straw around your child. When your child shows an interest in the straw, use that interest as an opportunity to introduce it. Start by placing your finger Over the straw when it is in the cup of liquid. This keeps the liquid trapped in the straw when you pick it up. Place this filled straw in the child's mouth and take your finger away so the liquid flows out as your child closes the mouth.
Gradually bring the straw lower and lower as the child learns to suck, so that the child and not gravity is getting the liquid out of the straw. Your child's interest will let you know whether to continue enthusiastically or whether help is needed. Some children need and extra bit of help. Ask your feeding specialist.
Improved straw drinking. Once your child is drinking from a straw, work on helping the child suck with the straw on the lips rather than the tongue. Also, thicken the liquid being sucked and increase the length of the straw. These techniques will help your child build more strength and increase lip control.
When both cup-drinking and straw-drinking skills are in place, have your child alternate between cup and straw drinking for daily liquid intake. Each works in different ways to build the oral skills so important to your child. Consult your child's developmental team or feeding therapist about any questions on any of these suggestions.
Resources
Bottle straws, are called by several different names. They are available in most toy and department stores, and in the baby section of many grocery stores.
National Down Syndrome Congress
1800 Dempster Street
Park Ridge, IL 60068-1146
National Down Syndrome Society
666 Broadway
New York, NY 10012
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Thanks to Denise Figueroa and Michelle Hamilton for all the useful information they shared with us at our September meeting.
Come to our next meeting, where we are going to get to know each other better, talk about our concerns and brag about our children.
Don't forget that the Buddy Walk is this month and we are counting on you, not only for coming but also for inviting as many people as you can.
Martha Vance
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New Support Group in Yuma
Meets every first Wednesday of the month, at 6:00 pm.
For more information contact:
Carolyn Silva at
(520)782-3431,
Haydensq@primenet.com or
Sandra LaRose at
(520)345-4496,
SandraLaRose@1st.net
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West Side Playgroup
Christy Varner is organizing a playgroup in the Northwest
valley, if you are interested give her a call at (602) 978-0622.
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Before I was a mom
Before I was a mom
I made and ate hot meals.
I had unstained clothing.
I had quiet conversations on the phone.
Before I was a Mom
I slept as late as I wanted and never worried
about how late I got into bed.
I brushed my hair and my teeth everyday.
Before I was Mom
I cleaned my house each day.
I never tripped over toys or
forgot words to lullabies.
Before I was a Mom
I didn't worry whether or not
my plants were poisonous.
I never thought about immunizations.
Before I was a Mom
I had never been puked on
pooped on
spit on
peed on
or pinched by tiny fingers.
Before I was a Mom
I had complete control of my mind
my thoughts
my body
and my mind.
I slept all night.
Before I was a Mom
I never held down a screaming child so that doctors could do tests or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.
Before I was a Mom
I never held a sleeping baby just
because I didn't want to put it down.
I never felt my heart break into a million pieces
when I couldn't stop the hurt.
I never knew that something so small could
affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.
Before I was a Mom
I didn't know the feeling of having
my heart outside my body.
I didn't know how special it could feel
to feed a hungry baby.
I didn't know that bond between
a Mother and her child.
I didn't know that something so small could
make me feel so important.
Before I was a Mom
I had never gotten up in the middle of the night every 10 minutes
to make sure all was ok.
I had never known the warmth,
the joy, the love, the heartache,
the wonderfulment
or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much
before I was a Mom.
-Author Unknown
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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 Meeting Coordinator and Newsletter Editor - Martha Vance (602) 547-9855
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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.