~Sharing News~
Newsletter of "Sharing Down Syndrome Arizona
May, 2000
Calendar for the East Valley
Our meeting this month will be the last meeting for the
East side for this school year until September.
It will be a "Thank You" party here at my home. I
wish each of you could know the incredible impact for
good you have had on my life. Please come for good food
and a chance to party with great friends.
When :Thursday May 11, 2000
Where: 425 E. Tremaine Ave, Gilbert / (take 60 to exit 182
which is Gilbert Road, exit and turn south. At the second
main intersection- "Guadalupe" turn left (E) At the first
red light-"Burk Street" turn right (S) The second street on
the left is our street - E. Tremaine, turn left. Ours is
the third house on the right.
Time: 7:00 pm until the cows come home!
Any questions? (Sharing) 480-906-6500 (Home)480-926-8685 or
(cell) 602-363-1123
Respite: Of course but please RSVP so I can know how many
kids will be here.
West Valley:
I’ll like to thank Joan McCabe-Kern for coming in April to
talk to us about IEP’s, She is part of Advocates Across
America, which is dedicated to teach parents and other
interested people how to advocate for children with special
needs. This organization offers "Education Advocacy
Training Tapes": a comprehensive program presented by
Joan McCabe-Kern. They can be purchased from Advocates
Across America at (480)917-0955. We also have a set in
our Lending Library- contact Gina at (480)926-6500.
We also learned that the Maricopa Advisory Council on
Developmental Disabilities provides advocacy services
(602)941-2199.
We have decided to print this newsletter all year round,
and to continue the West Side meetings over the summer as
well. I don’t know if we will stay at the same location
and time, but It will be announced in the next newsletter.
Martha C. Vance
West Valley
Tuesday May 9th,
7:30pm
At St. James Catholic Church
19640 N 35th Ave.
Glendale
We are going to learn a little bit more about each
other and network, Hope to see you there.Respite care will
be provided.
----------------------
DATE: May 6th, 2000, 10am
LOCATION: McCormick Stillman Railroad Park Located on the Southeast corner of Indian Bend and Scottsdale Rd. The phone # to the park is 480-312-2312. Our party will be marked with LOTS of balloons and signs (Ups and Downs Get-Together) to help you find us easier.
The festivities will begin at 10am with lunch between 11am and 12:30pm (those of you proficient at grilling PLEASE come at 10 and help us get the grills and food going!!!!). We are providing hot dogs and hamburgers. Please bring a sidedish to share… preferably NOT made with mayonnaise because of the heat. We will have some drinks, but you can bring some for your family too! Paper plates and utensils will be provided.
Activities for the kids will be provided by high-school students from the Mesa High Service Learning Program: face painting, parachute games and lots more. Train rides and Carousel rides are also available. Children under two are free and tickets are $1 per person per ride. You can also purchase a book of 12 tickets for $10. Please RSVP with Kym at 480-814-7459 so we can purchase the hamburgers and hot dogs.
We're looking forward to a GREAT time....see you there!!!!
---------
From My Heart To Yours:
Suzan Miles is not only my case manager; she is my
friend. Over the years she has watched me grow from a shy
unsure mom, into a Mother Tiger. She has seen my struggles
and growth as I have learned and grown in my feeble attempt
to be a good enough mom for David.
One day, I was sharing how I felt a mother’s personal
belief system can affect her feelings for her child.
I shared that as a Latter-Day Saint (Mormon) I truly
believe it is only David’s mortal body that has the
disability, but that who he really is, or his spirit
that is within him is the very best and most perfect
God could find, and that he has come to teach me.
With her adorable smile and her feisty attitude that I have
grown to know and love, she said, "Oh, Gina, I don’t believe
that for a minute!" With playfulness in her voice she
continued, "I just think one day God smiled
and said, ‘Hey… let’s see what Gina does with this one!"
Her words made me smile, for I am sure there are times God
must be chuckling as he watches me awkwardly scramble, trying
to know what is best for my son.
Parents are so honest with each other when it comes to
discussing the joys and trials of raising a child with
disabilities. Sometimes, in those reflective moments parents
might sincerely ask one another, "If you could do something
to take the disability away from your child, would you?"
Whenever I hear these conversations, I know that I am
out numbered, being one of the few people who would say
no. And then they look at me with furrowed brows, wondering
if I have lost my mind completely.
I thought back to how I developed this strange attitude.
It began over 21 years ago when I first met my beloved
friend, Kris Holladay. Kris had a daughter named Kari,
who was born with a serious birth defect, Trisomey 18.
This disability affects the children not only by leaving
their bodies and minds severely disabled, but most often
the children don’t even make it through the first year of
life.
When I first met Kris we were both young mothers trying
to keep our little ones quiet at a church meeting. She was
sitting, holding Kari on her lap, in an infant seat. She was
so tiny so I thought she was a newborn. Kari’s 3 year-old
sister, Tricia, was playing beside her mother. I asked Kris
how old her baby was and she said, "Nine months." I glanced
down at my own son Seth, who was a rambunctious little boy,
knowing he was that age. I was sure she misspoke, assuming
she meant to say ‘nine weeks’. Then I noticed Kris was very
pregnant and due soon. I must have done a double take,
trying to figure it out… perhaps she had adopted this tiny
baby. As I looked a little more closely at Kari, I sensed
something was different in that sweet little angel baby’s
face.
All of a sudden I didn’t know what to say. All I could
stammer out was, "Bless your heart. You are such a good
little mother." Her eyes twinkled as she playfully shot
back…"I’m not so sure that’s what my kids would say!"
As time passed our friendship grew. I found myself watching
Kris intently as she interacted with Kari. Somehow I thought
it would be different if your kid had a disability. I quietly
marveled as I saw her display only unconditional love for
Kari.
After David was born, I shouldn’t have but, I found myself
comparing. David was so much ‘less’ handicapped than Kari
was, and yet it was I who struggled. I thought after joining
her elite ‘in crowd’ of the "Handicapped Mother’s Club" I
would finally know the truth. I felt sure she would
tell me what it was really like. But it never happened.
I never heard her express one regret and I couldn’t
understand why.
When David was just a few months old I ran into Kris at a
hospital. We were getting on the elevator as she was
getting off. We were there to find out how bad David’s heart
defect was and when he needed surgery. My own heart was
still so raw and broken. As she came bouncing out of the
elevator with her usual loving enthusiasm she greeted us
with her typical, "Hi Guys!" Her cheerfulness only
confused me all the more, because I knew Kari had been
hospitalized from yet another serious seizure. I looked
at her with disbelief and said, "Don’t you ever get
depressed?".
She stopped and looked at me with her blue eyes glistening.
With an understanding I didn’t possess, she began,
"I thought this was it, this time Gina. This last seizure
was really hard on Kari and I honestly didn’t think she would
make it. But she did! She’s still alive!" She was
overjoyed and spoke as one who’d truly been given a second
chance. But I still didn’t get it.
Later I wrote a story about things I have learned from
David and others. I shared how when David was born I
couldn’t understand how Kris could be so happy. I wondered
then, didn’t she know that one of the ‘rules’ in the
unwritten handbook for parents of children with
disabilities was that were supposed to be depressed?
It was as if she couldn’t see how bad Kari was.
I thought if she did know, then surely she wouldn’t
be so happy.
After my story was published, Kris read it and we talked
about it. In an almost half embarrassed way, she tried to
help me understand. Her voice cracked with emotion and tears
welled up in her eyes as she spoke. She began,
"You know what Gina, I really couldn’t see it. When I
looked at Kari all I could see was my beautiful little
girl whom I love with all my heart. To me she was just
my little girl. I couldn’t see the differences."
At that moment I knew I was in the presence of an
angel who only saw through the eyes of love. I still
didn’t fully understand, but I do now.
My heart has taught me that whether I believe David’s
disability is a blessing in disguise from God and a part
of his plan, or that my friend Suzan believes God was just
having fun one day, really doesn’t matter.
What matters is what I do with challenges that are mine.
Once after having gone through something so hard for me,
a friend commented, "This will do one of two things to
you, it will make you bitter or it will make you better.
The best part is, you get to choose." She was right.
In these past 16 years it is through David that I have
learned things I couldn’t have any other way. It is with
a most grateful heart that I thank God for loving me
enough to give me my son. Though David may never read
these words, I want him to know that it is with all my
heart that I say "thank you" for being my most excellent
tutor. David, you have taught through the simple
things. To love completely and innocently, to accept others
for who they are, to love as if you’ve never been hurt, and
to dance as if no one is watching. I have learned through
tears, sorrow, and heartache, but even more through the
joy, humor, enthusiasm, and compassion you have brought
me. But most of all, you have taught me by the love I feel
in being your mom.
Thank you. I love you,
David’s Mom
----------
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!
----------
El contacto de habla hispana para nuestro grupo de apoyo
a los padres "Sharing" es Raquel Hoffman (480)357-9594
----------
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
-------
Web Sites Of Interest
www.ideapractices.org
"This site answers your questions about the Individuals with Disabilities Education Act, keeps you informed about IDEAs That Work, and supports your efforts to help ALL children learn, progress, and realize their dreams. "
www.sinetwork.org/index.htm
It's not unusual to see sensory issues in children with DS. There are some OT and PT type activities that can help. Talk with your OT.
http://www.touchmath.com/
TouchMath is an exclusive multi-sensory supplement
used internationally with K-3 and special education
students. Our highly successful approach makes mastery
of early math easy, fast, and fun!
-----------
Have you sent in your survey?
We would like everyone to be included in the
SDSA parent directory! If you accidentally lost
or threw out the survey in the April newsletter, contact Lori Marquette at
LoriMarque@aol.com or call (480)752-0995
----------
Ongoing Garage Sale!
All proceedings will go to Sharing Down Syndrome
Arizona. If you have any items you’d like to donate
please contact Martha at (602)547-9855.
-----------
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 every day.
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
Chewed 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 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 that 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 okay
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.
"Before I Was a Mom"
--------
Grinding Teeth
I spoke to a friend who's child is 5 and has Down syndrome. He was grinding his teeth a lot .
My Elizabeth has ground hers down to nubs. Not at night (everyone asks that) she does it when she is doing paper work and reading. My friend gave her son a vitamin B complex once a day and he stopped grinding.
So I tried it. It has helped immeasurably. Elizabeth has not stopped entirely, but she had been grinding for 5 years so I think we need to wait for the habit to fade.
Kathy Mutschler
----------
Constipation and Down Syndrome
by Len Leshin, M.D., F.A.A.P.
Constipation is usually defined as the presence of hard or thick, pasty stools which cause discomfort as they are passed. In severe cases, the child has an inability to pass the hard stool on his/her own.
The direct cause of constipation is not enough water in the stool. This occurs because of the diet not having enough water-retaining elements (fiber) or because the stool is kept in the rectum too long, allowing the colon to reabsorb more water than usual.
In children with Down syndrome, two factors exist to make constipation more likely: low muscle tone and decreased motor activity. Both of these make the colon more likely to retain stool for longer periods, leading to loss of water from the stool.
If left untreated, constipation can lead to (1) rectal fissures: tears in the rectum leading to bright red blood on the surface of the stool and on the toilet paper, but not mixed in with the stool; (2) impaction; (3) stretching of the rectum leading to the loss of the sensation of the need to have a bowel movement. This last problem can further lead to the weakening of the rectal muscles (sphincters) and cause the child to have bowel movement accidents (in medicalese, "encopresis").
The usual treatment of constipation is dietary: increasing fiber, fruits and vegetables. In bottle-fed babies, the introduction of a stool softener is used, such as corn syrup (Karo), malt barley extract (Maltsupex) or lactulose (Diphulac). Lactulose is also used in children and adults. All of these soften the stool by adding water to the stool. Another way of adding dietary fiber is through products such as Metamucil, Citrucel, or fiber wafers. Increasing the amount of fluids the child drinks is helpful; and in older children, decreasing the amount of constipating foods (milk products, bananas, white rice) may also help.
For babies who are having a hard time passing a stool, the use of glycerin can be helpful. These can be found as solid suppositories or in liquid form (Babylax), and are useful as occasional measure. For severe constipation, your doctor will usually recommend a medicated suppository or enema; please do not use these without consulting your doctor first. Likewise, avoid other laxatives unless your doctor specifically recommends them. The treatment of encopresis is long and involved, and I won't go into that here.
Two special conditions require further mention in children with DS: Hirschsprungs disease and hypothyroidism.
Hirschsprungs disease is a condition in which a segment of colon directly above the rectum is formed without nerve endings. This condition makes it impossible for that segment to contract and therefore push the stool along into the rectum; the stool backs up just above the rectum and only enters the rectum when enough stool backs up to push the front along (like a train caboose pushing the engine). These babies typically do not pass stool in the first 48 hours of life, and are chronically constipated. Children with DS do have an increased risk of having Hirschsprungs disease, and sometimes it can be very difficult for the doctor to tell the difference between Hirschsprungs and the normal stooling pattern of a baby with DS. The diagnosis is made by first performing a barium enema on the child, and if that exam is suspicious, confirmed by a rectal biopsy. Treatment is the removal of the segment of colon without the nerve endings (the length is variable from child to child); the first surgery attaches the ending of the colon to a specially made opening (colostomy), and a second surgery to reattach the healthy end of the colon to the rectum is made at around the first birthday. This solves the problem of constipation, though children without long segments of colon may have problems with diarrhea and malabsorption for the rest of their lives.
Constipation is also one of the signs of hypothyroidism, another condition more common in children with DS. Because the signs and symptoms of hypothyroidism can be well hidden in children with DS, a regular thyroid screening blood test is recommended every one to two years, even if the child is growing well.
This and other articles by Dr. Leshin can be found at www.ds-health.com.
--------------
Proud parents Baby’s Name DOB
Martha & Tim D’Agostino Hannah Kathleen February 25, 2000
Daniella Clapp Christina Sarah February 29, 2000
Kathy & Shawn Howe Hannah Kruse January 20, 1999
Colleen & Rich Van Slyke Lily Grace March 1, 1999
Kim & Jeff Kitchen Brendan James February 25, 2000
Gail & Doug Wesson Benjamin Jake September 23, 1999
Cindy & Larry Bockius Sarah Ann November 22, 1998
Ramiro from Equador Jessica
Robert and Laurie Neville Sarah Catherine August 24, 1999
------------
Parents! Give this to your Teachers!
Inclusion Fusion
Sponsored by : Az TASH
June 8th, 2000 from 8:30am to 4:00pm
At: Orange Tree Golf & Conference Resort
10601 N 56th Street
Scottsdale, AZ 85254 (602)948-6100
Speakers: Janet Holt and Tracey Gefroh
This training will provide teachers with strategies for including students with significant disabilities in the general education environment. Topics will include:
What is inclusion?
Creating a classroom community and
Effective strategies for working with and supervising instructional aides
Registration Fee: $35 includes lunch.
Please mail money order or check to:
AZ TASH Teacher Training
9270 E Mission Ln #215
Scottsdale, AZ 85258
Include your name, address, phone number, organization and position (if applicable), choice of lunch (Turkey Croissant or Vegetarian Croissant, with pasta salad and fruit).
There will be no written confirmation sent. Cancellations after May 18th will require $15 processing fee.
--------------
My Little Boy Blue
by Donna Coppinger, 1998
This is my story about little boy blue,
his life so tender will surely touch you.
He was given to me by the grace of God,
to look at him you might think he's odd.
He's different from you, he's different from me,
not different from God you can plainly see.
His smile so sweet, so innocent,
from heaven above he was sent.
I feel so blessed for having my son,
thank you Jesus I have just won.
You gave your life so I could have mine,
the child you sent will make life shine.
To people who thought life could not go on,
he's given us all the will to be strong.
He's shown us things we never knew,
he's changed my heart, my family's too.
What do I owe? There cannot be a price.
For little boy blue, his name is Bryce.
-------------
Sharing Down Syndrome Arizona
Board of Directors 2000-2001
President
Gina Johnson
Vice President
Lori Marquette
Secretary
Shelba Burger
Treasurer
Kay Bradshaw
Westside Coordinator and
Newsletter Editor
Martha Vance
Board Members
Kym McMullin
Chris Rescio
Curtis Johnson
Velma Lisa Leftwich
Nancy Gunderson
Calendar Chairperson
Alice Bayer
------------
Gina and Curt Johnson
Sharing Down Syndrome Arizona! Inc.
425 E. Tremaine Ave.
Gilbert, AZ 85234
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.