~Sharing News~
Newsletter of "Sharing Down Syndrome Arizona
June, 2000
Volume 9, Issue #5 Published Monthly
West Valley - Next Meeting
We will continue to meet at the same location, St. James Catholic Church, until further notice. We are changing our meetings from the second Tuesday of every month to the fourth Tuesday so that we can coordinate with the East Valley meetings.
Our last meeting was an informal one, where we talk about our group, and about Sharing Down Syndrome Arizona. It was a very good meeting and I got great input.
Our next meeting will be June 27th, Upward Foundation will send someone to teach us some Sign Language.
I know from experience that sign language helps a relieve the frustration some of our children experience because they can not communicate their needs and wants. Scotty has been using signs since he was 10 months old. He is now 3 years old, and unable to speak yet, but he can let me know what he wants through sign language. See you at the meeting,
Martha Vance
West Valley:Tuesday June 27th,7:30pmAt St. James Catholic Church19640 N 35th Ave./GlendaleWe are going to learn Sign Language as part of Total Communication.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.
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Meetings in the East Valley will resume in September.
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DATE SET FOR THE FIRST ANNUAL BUDDY WALK OF CENTRAL ARIZONA!
Mark your calendars for Saturday October 28th, 2000 at 9:00 a.m. and join families and friends from all over Central Arizona at the Arizona State University Campus in Tempe for the first annual BUDDY WALK OF CENTRAL ARIZONA.
Buddy Walks are held in over 100 cities across the United States to promote awareness and inclusion for people with Down syndrome. The walk has grown from 17 locations in 1995 to 100 in 2000. In 1999, more than 45,000 people from coast to coast participated!
Registration and sponsorship forms will soon be available on-line through the SDSA web site (www.psln.com/~sharing) and through a link from the National Down Syndrome Society web site (www.ndss.org).
Registration for the 1 mile walk is FREE and includes admission to the post-walk festivities. Walkers who obtain sponsorship dollars at various levels will be awarded prizes (such as T-shirts) for each level achieved. T-shirts will also be available for purchase at the event.
This is the first time that Sharing Down Syndrome Arizona! Inc. is participating in the planning of a
Buddy Walk and we would like to strongly encourage your participation. We estimate that there are between 5000 and 7000 people with Down syndrome in the Phoenix Metropolitan area. What a terrific opportunity for us to get together and show our support.
For more information, or if you are interested in volunteering, please contact Maureen Mills at (480)704-0809 or send an email to azbuddywalk@yahoo.com.
If your business is interested in becoming a sponsor, please contact Tim Marquette at 480-752-0995.
"Everybody L. E. A. D. S. (Learns & Energizes About Down Syndrome) in a Buddy Walk."
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From my heart to yours…
By Gina Johnson
Dearest Friends,
I can’t tell you how much it meant to me to have you come to my home for our end of the year "Thank You" party. My heart was so touched to see you all and especially to see all of your children. I love you all more than my words can say. My heart was especially touched when we had that sweet young new mom who is five months pregnant with her baby who has DS. You each made her feel so welcome. Thank you! How can I ever thank you
enough for all you do for new and old parents alike? She doesn’t know it yet, but she had just joined the most elite and wonderful group of parents in the world!
I remember how hard it was for me the first time I was going to see another child who had Down syndrome. I didn’t want to offend his mom so I was hoping she couldn’t see my fear. And I’m not sure why I was afraid but I was. I guess I felt afraid, not knowing what I would feel. What I didn’t expect was to meet the cutest little blond five-year old boy named Connor. When his mom asked him if he knew who I was, he said, "Well this must be David’s mom!" I about fell over! I had no idea he would be so precious or that he could talk. That is the day I officially went from being ‘Gina Johnson’ to ‘David’s Mom’. Connor then put his arms around my neck and hugged me. That hug began it all. I fell in love that day and I have never been the same since.
Last month I was on cloud nine. I was so thrilled to have Martha Beck, author of Expecting Adam, come and talk to us about her feelings and experiences with her son. Her delightful sense of humor and way of seeing life as it really is touched me deeply. Her understanding of who Adam is and not only the acceptance of her son but the rejoicing in him made me cry. Thank you dear Martha!
Do you remember when I told you a while ago that David had been invited to a birthday party for a sweet girl named Joy Hatch? Well he went and had the greatest time of his life. (and I worried the whole time!) He decided after that he wanted to have a party of his own so last month we did. When he handed out his invitations I hand no idea if anyone would really come. To my pleasant surprise we had a house full of kids.
Probably what touched my heart the most was just seeing these typical teenagers goof around and have fun and be a part of David’s life. That is not something I ever expected the day he was born.
At the end of the party a sweet friend, Kathy, confided in me that she saw him sneak one kiss. They were waiting to have their picture taken and as soon as it was, David leaned over and kissed Heather on the cheek.
Even though it was an innocent kiss, I said I would talk to him about it later. The next day Jared Burr, another friend came over to ask David how the party went. As guys will and in a teasing way ,he taunted…"Hey David, Did ya kiss any girls?" Before I could say a word David’s eyes sparkled as he replied…"Yeah!!!"
I thought that would be the perfect time to say something. So I with my best ‘mean mother’ face I said firmly…"David…we don’t kiss girls!" He grinned and looked at me and with enthusiasm said, "Yeah Mom, I like it!"
When I heard that, I about died! But later I thought of the first kiss I had when I was 15. It was innocent as well. What a journey this young
man is taking me on. I think I am in for the ride of my life! I have a feeling it’s going to be quite a learning experience for him and for me.
In last month’s newsletter I shared with you how even if I could, I would never change David for one minute. I told you I developed this strange attitude from my dear friend Kris Holladay. I wanted to share something she wrote.
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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 Raquel Hoffman (480)357-9594
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Visit Our Web Site!!
At: www.psln.com/~sharing.
I am excited for you to look at it, and give me any feedback that you feel is appropriate. We have a section called "Arizona Family Webpages" and I am inviting you to join us! You may email me off of the website, or at Lorimarque@aol.com
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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:
You can also contribute through United Way by earmarking your donation with our address and phone # above.
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Guardianship
www.maricop.gov/supcrt/ssc/sschome.html takes you right to the self help
center form. You're looking for guardianship of an adult
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Web Sites Of Interest
Special Education
www.delphi.com/spednetwork
www.tri21.org/IEP/ Tons of Great LINKS
www.ashleysmom.com/
www.inclusion.com/
www.iqonline.net/wewillprevail/
www.wrightslaw.com/
www.edlaw.net/frames.html EdLaw
www.ed.gov/offices/OSERS/IDEA/ IDEA 97
www.ncd.gov/
www.acf.dhhs.gov/programs/add/
www.nichcy.org/
www.quasar.ualberta.ca/ddc/incl/inlist.html
www.karengaffneyfoundation.com/mainpage.htm
www.ldonline.com/
www.askeric.org/
www.newhorizons.org/
www.proedinc.com/ materials for spec.ed, speech ...
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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
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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.
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The Thyroid and Down Syndrome
by Len Leshin, M.D., F.A.A.P.
Normal Function
The thyroid gland sits at the base of the front of the neck and makes thyroid hormone from iodide, thyroglobulin and tyrosine. This results in the production of thyroxine (T4), which is a "prohormone" (it's inactive but just one step away from becoming a real hormone), and the actual thyroid hormone, T3. Both T3 and T4 are secreted by the thyroid into the blood stream. T4 is converted to T3 by the thyroid, kidneys, and liver. And it's the T3 that's so important for normal growth and development of infants and children, and normal metabolism of all ages.
So where does the Growth Hormone (GH) fit in? The GH, synthesized in the part of the brain called the pituitary, appears to be the mediator between the thyroid hormone and the individual tissues. You can also include somatomedins, a group of proteins under the control of GH, as mediators between T3 and body tissues.
Thyroid function is controlled by Thyroid Stimulating Hormone (TSH), a hormone made in the hypothalamus and pituitary. If the brain detects that T3 levels are low, more TSH is made which tells the thyroid to make more T4 and T3. If levels are too high, the brain slows down making TSH.
Hypothyroidism
This is the state of not making enough thyroid hormone, and is the most common thyroid problem associated with DS. This can be present at birth (congenital) or may occur at any age (acquired). Every state in the US and many other countries routine screen all newborns for hypothyroidism. In newborns and infants with DS, the most common reason for hypothyroidism is that the thyroid did not form correctly in the fetus. In acquired hypothyroidism, the most common reasons in toddlers and older children with DS is (1) autoimmunity (where the body makes antibodies against its own thyroid) and (2) thyroidits (where the thyroid tissue becomes replaced with white blood cells and fibrous tissue).
The symptoms of low thyroid hormone are difficult to pick up, especially in infants. They include decreased growth, decreased development, an enlarged tongue, decreased muscle tone, dry skin and constipation -- all of which might be expected in an infant with DS. So, it is recommended that all infants with DS be checked at birth, 6 months of age, 1 year of age, and once a year thereafter for thyroid function, regardless of their growth.
Screening for thyroid function in infants usually involves only a TSH level; if the TSH is elevated, then the T4 will be checked. In older infants and children, a T4 and TSH is recommended, and some doctors include a measurement of T3 as well. Typically in hypothyroidism, the T4 will be low and the TSH will be elevated (as the brain is trying to tell the thyroid to get going).
Some infants and young children have blood tests that show a normal T4 but a high TSH. This condition is called "idiopathic hyperthyrotropinemia." While the cause isn't clear, this may reflect a regulatory defect of TSH, or it may be a sign of impending true hypothyoidism. Some endocrinologists will recommend retesting in 3 to 6 months, and others will recommend treating as if it were an early hypothyroid state.
Treatment is the replacement of thyroid hormone with synthetic thyroxine. The dose is managed by watching sequential blood tests to see how the thyroid responds. Treatment is usually needed for life. It should be noted that if the parents have become used to a calm, sedate child who is hypothyroid, the replacement will look as if the child has suddenly become hyperactive, when in fact the child is returning to his or her "natural" state.
Hyperthyroidism
While not as common as hypothyroidism, this does occur. The usual cause is, again, autoimmune disease, but in this disease, the immune system cranks up the thyroid. (This is called Graves Disease.) Symptoms include rapid heart rate, nervousness, sweating, decreased attention span, flushed skin, always feeling hot and loss of hair. Often these children will have a noticeably enlarged thyroid.
Testing here includes TSH (low), T3 (elevated) and T4 (elevated).
Treatment is aimed at blocking the action of the thyroid hormone on body tissues. Antithyroid drugs are often the first course of action. However, almost all of these drugs can cause significant side effects. Surgery is sometimes used to remove part of the thyroid, and then the child or adult is begun on thyroid replacement if needed. In adults, the most common treatment is destroying the thyroid by drinking radioactive iodide, and the patient then takes replacement thyroid hormone. However, radioactive iodide is not often used in children because of the risk of thyroid carcinoma, especially in children with DS, where leukemia is more common.
Thyroid, DS and Controversy
Before the genetic reason of Down Syndrome was known, many people thought that DS was caused by hypothyroidism. In 1896, 20 years after Langdon Down first described "mongoloids" (ugh), Telford Smith reported that giving thyroid therapy improved physical and mental conditions of these children. For decades later, researchers argued if all children with DS had hypothyroidism or not. With improved lab tests, the true picture emerged of most children with Down syndrome having normal thyroids.
There have been many claims for giving all children with DS thyroid hormone replacement, regardless of their blood tests. Dr. Turkel included thyroid hormone in his "U" series, Harrell's paper in 1981 on vitamin and mineral replacement included thyroid hormone therapy, and one researcher, Clemens Benda, advocated giving all children with DS a mixture of thyroid and pituitary gland. However, there is no known benefit from giving thyroid hormone to children with DS who have normal thyroid function, and could be detrimental.
Some researchers have claimed that there is a "low-borderline" thyroid state, and the thyroid tests could be normal as the body is able to partially compensate. However, research shows that giving thyroid replacement to individuals with DS and low-normal thyroid tests had no cognitive improvement.
This and other articles by Dr. Leshin can be found at
www.ds-health.com
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In The Spotlight
Jeremy is quite the charming man about town. His social smile and friendly waves draw the attention of young and old alike. Those who chose to ignore his initial greetings eventually succumb to his charms due to the fact that he WILL NOT allow himself to go unnoticed. He has also turned on the charm for 2 brothers and a sister who think he is the
best thing around. Although he is not walking unassisted, he is constantly entertaining the family with his acrobatics and ability to get
into the bathroom and unroll an entire roll of toilet paper in just seconds flat!
Now at the age of 3, Jeremy communicates using 2 languages. Sign language allows him to communicate using about 75 signs and gestures. He is able to tell his family what he wants and is continuing to learn more sign language every day. Because of his speech delay, this has lessened his frustration immensely and opened up many doors for communication.
The second language that Jeremy uses is the "language of love" which comes very easily and never had to be taught. He instinctively uses it with his parents, brothers, sister and strangers alike. One very good example of this was seen recently at a church picnic. A gentleman, whose wife had just passed away, walked up and started talking with Jeremy's Grandpa. As they spoke, the man said that he was "not doing too well". Jeremy, who wouldn't have been able to understand what these spoken words meant, immediately reached out to be held by the man. This gentleman hesitantly took Jeremy, and as little tiny arms wrapped around his
shoulders and a little tiny face buried in his neck for comfort, the man began to cry. Jeremy caressed his face and smiled at him. Through tears of grief about his wife, he expressed love for a little boy who knew how desperately he just needed a good hug. Jeremy is currently working on attaining "trilingual" status by adding spoken language to his repertoire
and can say about 10 words.
Way to go, Jeremy!
Below is our debut of a new column we are starting highlighting extraordinary people who happen to have Down syndrome.
Would you like to see your child or adult with Down syndrome highlighted in an upcoming issue? We would! Allow us to put them "In the Spotlight" by calling Kym at (480)814-7459.
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Some years ago, a group of mothers of children with disabilities were talking philosophically about our lives and our children's lives. One of the questions being considered was, "If you could turn back the clock, would you change your child to be normal?" I knew this question was posed as a result of the explosion of information and possible treatments in the genetics field. I sat and listened carefully with my ears and my heart.
I remember being told at Kari's birth that she would be physically disabled, mentally retarded and she would die very early in infancy. I remember being frightened of her and of our uncertain future. I remember crying until there were no more tears to cry. I remember wanting Tricia to have a sister to grow up with and share their lives together. I remember wishing things could be "back to normal." And, I remember overcoming my fears and embracing my tiny daughter with love, making today the important moment and letting tomorrow take care of itself. I remember smiling and laughing until my sides hurt. I remember Tricia playing with her little sister and taking delight in making her smile. I remember thinking how very normal our lives were with a daughter with disabilities. I remember asking myself how come I was the luckiest mom in the world!
When it came my turn to share my thoughts about changing Kari to be normal, I asked, "Why?" I wanted to know -- was the question that I could have Kari just the way she was..."to be" or change her to be normal..."not to be"? I then asked my friends, "Would I forfeit every overwhelming challenge, each heartache, all the moments of frustration?
Would I have to give up cherished memories, unknown strengths, incredible people, all the lessons of love and life? And, would I have to go back to being the person I was before, too?" The group of moms became quiet and the silence was deafening! We searched each other's faces for the answers that could only be answered in ourselves. I knew that everything I had become was the result of this remarkable little girl! Change her - never! Change me - I hope so!
Someday I will ask this same question of Kari. It is her answer I wish to know! Would Kari have wanted to be different than she was? Would she want her life "to be or not to be?" That's the real question?
"The greatest; distance we have yet; to cover still lies within us."
Until next time, Kris Holladay
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Thanks dear ones for listening. Please know that you are loved.
Love , David’s Mom
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To Be or Not to Be Stubborn is ….. as stubborn does
by Carol Johnson - Chaos Consultation, Canada
It is interesting, to me, how many people talk about their child's stubborn behavior as if it was part and parcel with having Down syndrome. It isn't.
There are many people who are stubborn who do not have Down syndrome. In fact, in some situations being stubborn is seen as a positive trait.
I have heard people say that the reason they came out as winners in a situation was because:
"I was stubborn and no one was going to push me around"
"They thought I would cave, but I was too stubborn to give up easily"
So, what is this stubborn behavior that we see with students who have Down syndrome and how could we think about it?
I see stubborn behavior as a direct result of lacking the skills and/or language to negotiate a position.
Often, we will take a stance on something we care about and, right or wrong, stick to that stance until we understand or agree with
another's view.
A student with Down syndrome will continue to do things in a specific way because it is safe, it is known and it has worked in the
past. When we try to change their behavior, when we try to introduce new things, we threaten their "safe place."
Some of us are open to change and will accept change far better than others, this is the same with students with Down syndrome.
Some of us are able to argue our side of the issue, some of us can be persuasive and bring people to our view and not have to change - the other person changes.
Students with Down syndrome cannot do this as well. He/she lacks the language, the cognitive flexibility needed in verbal discourse and the larger world view to win many verbal arguments. So...he/she looks stubborn.
Think about it. If you were in a situation where you did not understand what was going on around you and people were trying to get you to do something you were unsure of, what would you do?
You would resist, you would stay doing what you know, you would be seen as stubborn. What if you did not have the language skills to share your views, what if the other party did not understand you or did not care about what you had to say? Then, you were punished or censured because you were seen as stubborn.
How would this affect your level of cooperation the next time? How would you respond to these people who "made you do something you did not understand nor even agree with?" You may become even more stubborn or resistive. And, they, in turn would see this as "non compliance" or as a "problem."
They would respond in a way that assumes that your stubbornness is something that exists on its own; apart from you having a different view of the same situation or apart from you being unable to communicate your point of view successfully.
How can we change the pattern?
By letting go of the myth of stubbornness and seeing stubborn behavior as resistance.
Resistance to something new, resistance to something that is not understood, resistance to having others being in control, resistance to someone they may not trust or understand. The only way to help anyone become less resistant is to help them to feel safe enough to try something new or different.
When a child is young, s/he will not respond very well to changes; s/he will withdraw. As s/he grows older, s/he will use the strategies that have worked in the past .... withdrawing, not looking, pouting, sitting, throwing herself down (stubborn looking behaviors).
The more stubborn a student looks, the more useful this behavior has been in the past; using this repertoire of strategies has allowed the student to remain in his/her safe place. Adults are part of the problem.
We have taught the child what s/he needs to do so we will stop pushing or so we will leave them as they want to be. Then, sometimes, we become angry.
As we become angry, the child resists further as s/he does not understand what is happening and is often upset with the situation as well. How many of us respond to anger if we are nervous about a situation?
How many of us would become less "stubborn" if someone demands that we do something that we are not sure about?
When faced with a student who appears to be stubborn, think about the following:
1. Although this makes sense to you, it must not make sense to this student. How can you help the student gain a better understanding of what it is you are wanting? Remember, saying that it is "good" for them is not helpful. Can you show, act out, the positive outcome of the request? Can they try it in small steps? Can you find a way to make it clearer, less threatening? What kind of language are you using'?
2. Is there a way to help the student use other means to say .…. "no", "wait", "this is scary", "you want me to do what?" other than the behavior that is being seen?
Until a student has some way of communicating with others, the resistance will look like stubborn behavior.
If you were in a situation where you did not understand what was going on around you and people were trying to get you to do something
you were unsure of, what would you do ? You would resist, you would stay doing what you know, you would be seen as stubborn.
3. Follow the old adage .…. "Win them over with honey" ..... any human being will respond to positives over coercion. Always enter a new
situation using something that the student likes from other situations, go from what the student already knows and build on it. Pair a new experience with something that is already successful and liked by the student.
Use play, songs, games etc. to help a student deal with new experiences. Watching another student have a success may not work as some students do not learn from watching others as they may not understand that they too could have that success.
4. You need to have a trusting relationship with anyone before they will try something new just because you told them to do it. Some students take a long time to reach that level of trust. You cannot be the "punisher" and build a trusting relationship with a student. You cannot coerce some behaviors and reinforce others; this inconsistency will stress a student; the student may never feel safe enough with you to let go of those behaviors that help him/her to feel safe.
5. When you feel yourself becoming angry, stop, laugh, walk, relax, count, etc. Release the tension in the situation and then try again ..... maybe in a different way.
Sometimes a student will come around just because you have calmed
down and re-entered the relationship
in a way that is not threatening to the student.
Some of the best people are just stubborn enough to hang in there
when many others have given up on a child. So, join them.
Be stubborn about a child's ability to learn and help him or her to
feel safe enough to venture into new territory with you by his or her
side.
Reprinted, with the author's permission from the Newsletter of the
Canadian Down Syndrome Society - Spring 1998
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Sharing Down Syndrome Arizona Board Meetings
Our board is meeting monthly at this time, our next meeting will be Thursday June 1st at 7:00 pm.
These meetings are open, 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
Baby girl: Krystin Blair LaRose 4/3/2000
Parents: Sandra LaRose and proud Husband.
Baby girl: Rylee Jean Jenkins 4/13/2000
Parents: Andrea and Jared Jenkins
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Cookbook for people with developmental disabilities who can read. After working with people in their homes, teaching them independent living skills, I discovered there was a gap in cooking resources. I could find picture cookbooks, but not word cookbooks that simplified the cooking process. So, I created a cookbook to fill the gap. The result was that people I worked with, who needed my assistance cooking before, could now cook independently when using my cookbook.
Recently reviewed by Disability Solutions and the Council for Exceptional Children, the cookbook is called "Cooking Made Easy."
Every recipe is coded from 1-5 according to level of difficulty. Recipes are written in large print, for easier reading. Recipes are broken down into detailed, easy to understand steps. Dollar sign codes on each recipe signify cost of ingredients. There are 88 recipes, divided into the following categories: Appetizers/Beverages, Soups/Salads, Vegetables, Main Dishes, Breads/Rolls, Desserts, and Breakfast.
The cookbook cost is $19.95 each. Shipping in the U.S. is $4.95 per order. And quantity discounts are available for orders of 5
or more books. My website contains more information: http://www.cookingmadeeasy.org or contact me at: Eileen Laird e-mail eileen@cookingmadeeasy.org, P.O. Box 2117, Boone, NC 28607
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SUMMER ACTIVITIES
Camp Challenge—The City of Tempe Parks and Recreation Department provides Tempe's developmentally disabled and/or physically challenged youth (ages 5-22) with a variety of exciting summer activities. This program will feature arts and crafts, music, sports, drama, dance, bowling, swimming and special events.
The program provides a staff to camper ratio of 1-5.
DATES AND TIMES
Tuesday, June 6 - July 27*, Mon-Thur 9 AM-3 PM
*Note: Program will be closed on July 3–6.
Site closes at 12 noon on last day of program, July 27.
FEES
Session I - June 6-29th $84
Session II - July 10-27 $61
LOCATION: Rover School, 1300 E. Watson Drive, Tempe
Call (480) 350-5200 to have registration materials mailed to you.
Call your city’s park and recreation department for information on activities in your area.