~Sharing News~
Newsletter of "Sharing Down Syndrome Arizona
July, 2000
Volume 9, Issue #7 Published Monthly
Next Meeting West Valley:
Tuesday July 27th,7:30pm
At St. James Catholic Church
19640 N 35th Ave./Glendale
O
ur discussion will be about Language and communication, by Upward Foundation.
Respite care will be provided
Please note that the meetings in the West Valley have changed from the 2nd Tuesday to the 4th Tuesday of every month starting in June.
Meetings in the East Valley will resume in September.
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We had a great time at our last meeting learning some basic signs in sign language. We even sang and signed at the same time! I want to give a big THANK YOU to Sylvia from Upward Foundation, who made it possible.
Scotty, my son, is now three and a half years old and is not talking yet . However he has been signing since he was a year old. Signing has been not only a great frustration reliever, but also has given him power. Power to communicate his needs and wants, to become an individual.
Just imagine that you are in a foreign land, where nobody speaks your language… wouldn't that feel awful, as you would not only feel frustrated, but powerless. You would probably try to communicate with gestures. I know this from experience, as I came to the United States as a foreign exchange student. No one spoke Spanish, and even though I could read and write English, my ears weren't trained to understand it. What a shock!.. Our babies have to go through that as well.
I know some parents worry that if their child learns sign language, they won't be motivated to speak. I think it's the contrary, that being able to sign shows them that communication is powerful and essential , this knowledge gives them an incentive to learn to communicate with everyone, not just with people who know sign. After all, a lot of the people they are going to relate to will only understand spoken language.
On our next meeting we will be learning more about language and communication. I hope to see you there.
Martha Vance
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Class of 2000
ANNOUNCING:
Our son, Daniel R. Morgan graduated and completed his school career on May 18th.
It is with great pride we share this momentous occasion with you, our family and friends.
Our journey has been a different one from most. We are very proud of Dan's many school accomplishments.
In Elementary School, Dan was the first student with special challenges to attend his neighborhood school. He paved the way for many other students with special needs.
In Middle School, Dan was selected to be a member of the Show Choir performing twice in Disneyland with his class. He also auditioned for the school's annual musical and won a part in four dancing numbers and one singing number.
In High School, Dan again was selected to be a member of the Show Choir and performed four more times in Disneyland. He also was a member of the JRROTC earning an individual Class Leadership Award. He made Petty Officer 3rd Class, earned a Conduct Ribbon with three clusters and was awarded The VFW Leadership Commendation & Ribbon for his grade level… His unit received a Citation for being in the top 5% in the United States for overall achievement.
As we enter the next phase, I can't help but reflect on the years gone by. I
remember the day he was born, April 4, 1979 so clearly. He weighed only 4 lbs., 4 oz. (same as his birth day) and the doctor at Phoenix 's St. Joseph's Hospital saying, "He has Down syndrome, what institution do you want to put him in?" "He won't be able to learn or enjoy much of what life has to offer." If only I knew where that doctor was practicing now, I would tell him how very wrong and painful his words were. I would share the tremendous joy Dan took in learning and his many accomplishments. How when he was ill, he cried because he had to miss school. I would tell him that Dan has been working for almost two years now and has the same enthusiasm and pride in his work as he always had in school.
And, I would share the many "normal" events in his life- the raft trip down the San Juan River; his loving four year relationship with his girlfriend, Paula; the Military Balls, the many, many school dances; his volunteer work and his love of Jesus to name a few. I would tell him what a fine, giving and loving young man our Dan has become and that he has become a contributing member of our society and proud of it! How he loves those paychecks! Not only has he enjoyed what life has to offer, he has given back.
And so, we share this special celebration with you. Please continue to keep Dan in your prayers. God Bless.…
Our love, Dave and Nancy Skiver
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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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Visit Our Web Site!!
At: www.psln.com/~sharing
We have a section called “Arizona Family Webpages” and I am inviting you to join us!
We would also love to put your child's picture in our gallery. You may email me off of the website, or at Lorimarque@aol.com
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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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Have you sent in your survey?
We are gathering information to put in a parent directory. We will distribute the directory to all parents participating. We would like everyone to be included. If you accidentally lost or threw out the survey we included in the April newsletter, contact Lori Marquette at LoriMarque@aol.com or call (480)752-0995, she will send you a new one.
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The new issue of Special Child is now online and can be found at http://www.specialchild.com . In the previous issue of Special Child, there was an article by Phil Stinson, Esq. in our Potpourri section regarding the IDEA and related topics (Mr. Stinson is an attorney specializing in special education law and is also a parent of a child with special needs). I am pleased to announce that he has decided to join us on a regular basis, and will be providing legal and advocacy guidance in every issue! Please be sure to visit Mr. Stinson's new page, The Legal Files, at http://www.specialchild.com/legal.html
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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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Celiac Disease and Down Syndrome
by Len Leshin, M.D., F.A.A.P. www.ds-health.com
The small bowel has many roles, one of which is to absorb nutrients from our food. Celiac disease (CD) arises when the lining of the small bowel becomes damaged from exposure to gluten, the protein found in oats, barley, rye and wheat. The small bowel becomes unable to absorb water and nutrients, causing a number of different symptoms.
Why does a child get CD? First, the disease arises only after long term exposure to gluten. Second, there may be a genetic predisposition toward a "sensitive" small bowel lining. Third, certain environmental insults may make the lining more susceptible to injury from gluten, such as surgery on the gastrointestinal tract or a gastrointestinal infection. CD is much more common in Europe than in the US for reasons that aren't clear. (Some doctors feel that CD is just as common in the US as in Europe but is underdiagnosed in the US.) Whatever the initial reason, the gluten causes an immunologic response in the lining of the small bowel: the surface folds shrink and flatten and a "malabsorption" condition occurs.
Recent studies indicate that children with DS are at a higher risk to develop CD than the general population. The reason for that isn't entirely clear, but since children with DS are at a greater risk from auto-immune diseases, that CD represents another one of these type of diseases. Studies from Europe looking at the percentage of children with DS that have CD have ranged from 7% (1)to 16% (2). The only American study to date (6) found 4 to 5% of children with Down syndrome living on the East Coast had positive CD, but almost all the subjects were Caucasian, so this group was mostly of European heritage to begin with. Whether or not all patients with Down syndrome are at increased risk to CD is still unknown.
The signs of CD are varied, since the condition may be mild in some and severe in others. The majority of children with CD have what's called "failure to thrive:" lack of growth of weight, and sometimes height as well. Most have diarrhea, and/or vomiting. Children with CD are irritable and usually have a decreased appetite. The stools may be foul smelling, and in occasional cases, may not be loose but big and bulky. A small number of children will develop severe diarrhea leading to dehydration. The children who have had CD for several months will have bloating of the stomach and a loss of muscle mass. If not treated, malabsorption will continue to cause undernourishment and all the signs and symptoms that accompany it.
The main way of diagnosing CD has always been through biopsy of the small bowel. Under a microscope, the small bowel will show characteristic damage to the lining. One way this is done by having the child swallow a capsule attached to a string, which is used to retrieve the capsule after a period of time. Many doctors prefer to do a biopsy under direct endoscopy, however.
Since a small bowel biopsy is neither easy nor cheap, it's not in the best interest of the child or family to do a biopsy on every child with DS. So the best thing would be to have an easy blood test that can detect the children who need the diagnostic biopsy. A few blood tests have been tried in the past with unhelpful results, such as the antigliadin antibody (AGA) test. However, the blood test looking for antiendomysium antibodies (EMA) seems to be an effective screen. A recent study from Sweden looked at a group of children with DS and found 16% of the children screened to have elevated levels of antiendomysium antibodies, all of which were found to have biopsies diagnostic of CD.(2) When the AGA and EMA tests are combined, this produces an effective screen to determine who should receive the biopsy.
It's important to note that infection from Giardia, a microscopic parasite found worldwide, can mimic CD. Diagnosis of this infection is done by special tests on the stools.
Treatment is both simple and difficult: a gluten-free diet. All wheat, barley and rye products are off limits. Some children do tolerate oats, which the doctor should be able to determine. In most cases, the diarrhea resolves in 1 to 2 weeks. The older the child, the longer it takes to come under control. CD is a lifelong disease; it may from time to time subside to the point of it appearing to be gone, but the child must continue on the diet to avoid illness. The child may need vitamin supplementation to complete the diet. ~~~~
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In the Spotlight
Recently, while attending the State FFA (Future Farmers of America) Leadership Conference in Tucson, Cathy Green was asked during a workshop to write down a couple of goals for her life. She wrote, "To own a music store and to have my own house." On February 16, 1983 if anyone had told me that someday Cathy would have such goals and be living such a “normal” (whatever that is! ) life, it would have been nice. Instead, a pediatrician came into my hospital room and told my husband and I to put her in an institution and go on with our lives. Many changes and opportunities for individuals with Down syndrome have taken place since then, thankfully for the better.
Throughout Cathy's elementary school years (K-8th), she was fully included in regular classrooms and she had many excellent teachers. This year Cathy will be a junior in high school, while still included in regular classes, it took the power of IDEA to make it happen. One of my favorite inclusion quotes is:
“We need to develop in our regular education schools and classrooms a sense of community; a belief that everyone belongs, is welcomed, and has gifts and talents to offer”....Marsha Forest.
While writing this article I asked Cathy what she would like people to know about her. This is what she said:
“I am a teenager, I am a wonderful, beautiful kid, (has a great self image). I have a great family, my dad Ron, brother Herb, his wife Mary, my sister Liz, my little niece Hannah Madison and my dog Blackjack. I like to watch my videos and work on reports about my favorite music, which is oldies from 1950's and 60's. I also like country music, my favorite radio stations are KOOL and Camel County. I like raising my lambs for FFA to show at the county fair, visiting with my friends and going to water world. My birthday gift this year was a golf car which I love to drive.....OK Mom that is enough!”
We live west of Phoenix in Tonopah, living out here I had little contact with other families. In 1994 I bought my first computer and went on line. It opened up the world of DS families for us. For the first time I learned about the NDSS and NDSC. Since then we have been to four conventions. I belong to several parent email groups and host the Monday Night Down syndrome chat on AOL. We attend the west side Sharing group and would love to see more parents of young adults attend.
Mary Green, mom to Cathy (17)
Would you like to see your child or adult with Down syndrome highlighted in an upcoming issue? Allow us to put them "In the Spotlight" by calling Kym at (480)814-7459.
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Sharing Down Syndrome Arizona Board Meeting
Our board meets monthly, our next meeting will be Thursday July 13th at 7:00 pm.
These meetings are open to the public. If you would like to attend please call Lori at (480)752-0995 for details, and 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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Trouble Sleeping?
By Emily Kingsley
We started to notice that Jason (now age 25) was somewhat listless during the day and was actually nodding off and falling asleep at his job a couple of times during the day. (He actually lost a job because of this!) We put it down to the fact that he lives alone and often watches TV until 2:00 AM before going to bed. (That situation is being corrected -- but that's another story.)
Then my brother attended a lecture on Sleep Disorders and he was amazed to hear that 60% of people with Down syndrome have sleep apnea!!
We decided to have Jason tested (overnight in a sleep lab setting --with electrodes pasted onto his scalp, chest, etc. -- entirely non-painful -- and I was allowed to stay there with him overnight) and sure enough, he has a "moderate-to-severe" case of sleep apnea.
The doctor (Dr. Carin Lamm at Mt. Sinai Hospital in New York) impressed on us that this was not something to take lightly. Apnea is a condition in which, because of flabby muscle tone in the nose and throat, the tissues actually close and stop air flow when the person relax during sleep. The person literally stops breathing, then snorts or snores and starts himself up again.
Because of the repeated stopping and starting, the person never gets into the deep REM sleep that is required for good rest and replenishment. Because of this there is deprivation of oxygen to the general system, and the heart has to work much harder to get the oxygen the body needs. Over time this can result in damage to the heart (due to the stress it has been put through), and to the brain, possibly resulting in cardiac insufficiency, cardiac failure and even death! This is serious!!
Unfortunately, the treatment options are not wonderful. One is surgery. They can go in and reconstruct the passages so that they remain open more consistently. Sometimes removal of tonsils and adenoids is enough to accomplish this -- but sometimes that's not enough and more complicated reconstructive surgery is required.
The other treatment (non-invasive) is what's called a CPAP machine. CPAP stands for Continuous Partial Airway Pressure. It's a small soft-cushioned mask which is strapped on with Velcro straps. It covers the nose and mouth and shoots a continuous stream of air up the nose, keeping the passageways open.
It takes some getting used to -- but Jason's doctor insists that her patients (including many with DS) love it once they get used to it. "It's like riding in a car with your head out the window," she says. They get such marvelous restful sleep, have so much more energy and vitality. It's a real incentive to keep using it. I tried it and it's kind of like the first moment you put a scuba or snorkel mask on, you have a claustrophobic feeling at first then you have to breathe out against the stream of air that's coming in, but once you get a rhythm going, it's OK.
Monday night Jason did the second half of his sleep test, trying to get through a night with the CPAP mask on (and all the electrodes, like the first time) so the computer could calibrate how much oxygen he was getting and how effective the mask was. The technician had to experiment during the night to determine what level of pressure would be best for him to get the best results.
Here are the results we got:
Without the mask -- in 11 minutes of sleep with no mask on, he has 21 episodes of apnea or hypapnea (either actually stopping breathing ... or serious oxygen deprivation just short of stopping breathing). 21 episodes in 11 minutes -- that's approximately stopping breathing every 30 seconds!!
With the mask on, in 130 minutes of sleep, his rating was .9 (less than one episode)!!!
That is an incredible difference -- and they got that amazing improvement even though he was not being hugely cooperative. (In 130 minutes at the non-mask rate, you'd expect over 200 episodes -- but he had less than 1!)
He didn't like wearing the mask and woke up several times asking to take it off. But it was the first time and the doctor says they can work up to more wearing time and get him more used to it. She is definitely recommending that we start using the mask. "I would hate for him to go into cardiac arrest just because we didn't follow up on this," she said.
Now my job is to convince him that he absolutely needs to do this and make sure he uses it. When he moves into the group home some time in the next several months, there will be supervision and help with the device. So I may take it gradually until that time. But it seems that his health and stamina require this new intervention and I don't feel we have much choice.
I wanted to share this so all of you who have kids or involvement with people with DS can spread the word. Please share this information with others.
I believe this condition becomes more acute when the kids become adults... and the characteristic weight gain is another factor which attributes to the problem.
If your kid snores or seems tired or listless ... or if you just want to ease your mind ... you may want to contact a specialist in sleep disorders and see whether a screening might be a good idea.
Good luck and sweet dreams!
Emily Kingsley
Emily Kingsley is in the author of “Welcome to Holland”, and also a writer for “Sesame Street”. Her son Jason Kingsley is the co-author of “Count Us In: Growing Up with Down Syndrome”.
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From my heart to yours…
My Dearest Friends,
There is a story... “The King's Highway”, that tells of a king who built a new highway and then offered a contest to see who could travel it the best. People from all walks of life had come to win that race. Some were dressed in fine apparel and others were obviously poor, but each ran his fastest. As each runner traveled, they came to a place in the road where old tree branches, rocks and dirt were piled up, making it necessary to go around to finish the race. When they crossed the finish line, they all told of how hard the journey was with the pile of debris in their way.
A poor man ran that race as well, but when he came to the debris, he stopped to move each branch and heavy stone to the side of the road. To his surprise, when he moved everything blocking the road, he discovered an old sack filled with gold. When he finished the race in last place, he went to the king. He explained how he had found the gold and asked that the king return it to it's rightful owner.
The king handed the gold back to the man and said it belonged to him. The man protested but the king explained that this race was held to see who could travel the road the best. As he handed the gold back to the man he said, “The one who travels the road the best, is the one who makes the path easier for those who follow.”
So many people have made my path easier for me. Hearing my son's diagnosis after his birth, truly broke my heart. God put special people in my path who eased my way. They even carried me when I could go no further. How blessed I am that God continues to put people in my path who bring such love.
One of these people is my precious husband Curt. This poor guy has put up with a crazy wife and seven children. In our 25 years together, we have grown so much, but especially in the last 16, since our David was born. Curt is truly my strength. I remember the many joys, trials and tears that life naturally brings each of us. He has been incredibly generous to give me complete freedom to serve in any way my heart guides me, whether to visit new parents or attend IEP meetings. He has been there as we have visited babies having heart surgery and attended funerals where we are reminded of how precious each life is. I could not do it without him. Our children are precious to me. I feel so passionate about them. There are times when I leave my own family to visit others. Curt has been patient through it all.
At the May "Sharing" gathering in our home, I was stumbling on how to introduce Curt, because I was thinking about all we had been through together.
I began by saying... ”This is Curt... and he is…”. and then, I hesitated, searching for the right words to say. Without missing a beat, a friend interjected…”married to the madness!” Everyone laughed, but sadly, it's true. How thankful I am for the way he always makes my path easier. He loves me unconditionally and that's an incredible way to spend 25 years.
Others who God has sent to clear my path are Vicki and Charles Carlson. Their family loves David and lets him sleep over frecuently. They welcome him in their home with open arms at any hour. (Just ask them about last Father's day when he left our house at one o'clock in the morning, locking us in, and went over to sleep at their house, we never knew he was gone!)
The other night when we were at dinner with these good friends, they shared how they felt so much love for our son, and Curt asked me to tell them an experience we had a few Sunday's ago.
David has a sweet friend Claire Traeger, who he's known since he was three. To give you a little insight into her family, one Sunday a couple of years ago, David could not find his tie and we were running late so I made him go without one. I knew he would be sad when he found out he couldn't pass the bread and water to the "ward" (congregation) but I thought it might teach him a lesson.
When we arrived at church David ran to give Claire's dad, Hank, a hug as usual. Hank noticed David's tie missing and looked perplexed. I told him what happened. Without a word, Hank took off his own tie and lovingly retied it around David's neck. Tears filled my eyes, and I could not speak. Later, as my son stood before me proudly handing me the silver tray with the bread, I looked at his sweet face and Hank's oversized tie. My heart overflowed with love for this kindness shown to my son. Claire is much like her dad.
On this particular Sunday, Claire went before the church to share the feelings of her heart. As she stood at the microphone for a few moments, she was quiet, as if trying to find the right words to express her innermost feelings. My heart went out to her, knowing the courage it took her to get up there in the first place. She began by telling us of a three-day church youth conference she had attended. David could have gone but I was worried about letting him go alone. While there she felt sad and depressed, but was not sure why. She began to think about our Father in heaven, and as she did, it was as if she could see him. She saw herself standing beside him and he was holding her hand. This brought a great feeling of love to her and she began to feel better. She looked again, and on God's other side was David, holding his other hand.
While sharing this, she began to cry and she told us how thankful she
was to have David as her friend and that she will always love him. She said he teaches her many things. She expressed so much love for our son, and she spoke with such powerful emotion and feeling, my stomach tightened and tears filled my eyes.
Once again I realized that the heartache and trials, along with the love and joy that accompanies loving a child with a disability are worth it. There many others who also realize how precious he is. Through my life I thought I was the one helping David fit into this world and belong. Silly me, I am finding out what David has known all along, that I don't have to make a place for him, he has made it for himself! With the help of those who have made our path easier.
"Some People come in our lives
and quickly go…
Some stay for a while
and leave foot prints on our hearts..
and we are never, ever the same."
Love, David's Mom
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FREE The American Sign Language Dictionary on CD-ROM For Macintosh
Great tool for people learning sign language. For use on Apple Macintosh computers only.
I only have one, call me at (602)547-9855, Martha.
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Dear SDSA member:
Support your local Buddy Walk October 28th. Just four months away and there is still much work to do to organize the first Buddy Walk of Central Arizona. Our next general meeting is being held Monday, July 10th at 7:00 PM. We are planning to make this an impactful first time event and the group needs your help.
Even if you can't make the meetings, there are many ways you can help to make this a successful Buddy Walk. We need people to help solicit or donate items for a silent auction, identify and contact potential sponsors, and much help is needed the day of the event. Most importantly, we want to invite all those families and individuals connected with Down syndrome in Arizona to celebrate our coming together as an entire group. Please pass on our invitation to any person you feel has an interest or could benefit from a day with a buddy. Look for further details in the August newsletter.
Hope to hear from you if can assist with the event. If you have any questions, or want to be on the email list, for upcoming meetings, please call or email me.
Thanks! Your Buddy,
Maureen Mills
Buddy Walk of Central Arizona, Coordinator
Email: azbuddywalk@yahoo.com
(480)704-0809 or
Tim Marquette
Sponsorship Chairman
Email: marquette.timothy@mbco.com (480) 752-0995
Directions to meeting place: I-10 and Baseline, go west on Baseline to the 2nd light (South Point Pkwy) Go south (left) into Hilton South Mountain Resort and take the first right in Fountain Circle. Take an immediate right into Clocktower Center. Meeting will be held at Miller Brewing Company, Clocktower Center, Suite 105, 7776 S. Pointe Pkwy, Phoenix.
* There is an automatic locking system that engages at 5:00 and the main phone line is transferred to voice-mail. I would hate to have people stuck out in the halls wondering if they were in the right place so my Mobile # is: 602-316-1889 in case you have any trouble.
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Kids out of Surgery
Benny Wesson is having a speedy recovery from open heart surgery on May 2nd!
Bryce Coppinger is doing great after open heart surgery on June 8th!
Best wishes to Justin Burger for a speedy recovery from open heart surgery on June 27th!
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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
Editor of "Sharing News" - Martha C. Vance (602) 547-9855
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Dance with “The Wiggles”
The Wiggles are an Australian group who perform for children. "Wiggle Time" and “Yummie Yummie” are two of their videos. These are great videos for kids, simple songs and easy fun movements. If you can't believe anything could dethrone Barney, give The Wiggles a try and you will be surprised.
You can order their videotapes, through the internet, from Amazon and eToys, if you don't see them elsewhere. You will personally find them ridiculously simplistic but small children love them....
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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.