"A person with Down syndrome is not 'a Downs." The words that people use can help all individuals to lead more complete and enriching lives. Words can also create barriers and reinforce stereotypes. The primary goal of this statement is to ensure that correct language is used when talking, or writing about individuals with Down syndrome.

The correct name of this diagnosis is Down syndrome. There is no apostrophe. The "s" in syndrome is not capitalized. An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. Down syndrome is just one of many words that can be used to describe a person. A "child with Down syndrome" is a more appropriate way to discuss a person with this condition. Words can create barriers. Try to recognize that a child is a "child with Down syndrome" or that an adult is a "an adult with Down syndrome". A person with Down syndrome in not "a Downs". Children with Down syndrome grow into adults with Down syndrome, they do not remain "eternal children."

Each person has his/her own unique strength, capabilities, and talents. Try not to use the clichés that are so common when describing an individual with down syndrome. To assume all people have the same characteristics or abilities is degrading. Also, it reinforces the stereotype that "All kids with Down syndrome are the same".

Most importantly, look at the person as an individual -- your child, your family member, your student, your friend. Proudly acknowledge his/her individuality and accomplishment.
(The Down Syndrome Society of Rhode Island)

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October is National Down Syndrome Awareness Month!

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Nuestro contacto de hable hispana para nuestro grupo de apoyo a los padres "Sharing" es me querida amiga Raquel Hoffman, si tu necesitas de ella por favor llama al 480-357-9594. La junta para este mes para group enspanol es Octobre 15, 1999, de 6:30 a 8:30 en casa de Raquel - 8226 E. Plata Ave.( Mesa)

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September 26, 1999

Dearest Friends,

Our next meeting is going to be a great one. My dear friend, Joan McCabe-Kern is coming to talk to us about IEP's. (Individual Educational Plan) Joan is the founder and president of Advocates across America. This wonderful lady came to my Partner's in Policy Making class and though I always loved her, I knew after she presented there, I realized her insight and understanding not just of the law but of how to make it work is phenomenal. I hope you can come.

Who Joan McCabe- Kern Advocates Across America
When: Thursday October 21, 1999
Time : 7:00 p.m. till 9:00 p.m.
Where: Mesa Student Services Building
1025 N. Country Club, Mesa
One block south of Brown road - corner of 10th Place and Country Club Why: So we can be informed and empowered for our children's behalf. Respite Yes! :-)
Please come!!

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Buddy Walk Kay Greenfield and Lynnlee Goebel are once again hosting the Buddy Walk. It will be held on Saturday Oct 23, 1999 in Encanto Park between Thomas and McDowell in Phoenix. The registration time is 9:00 a.m. and the actual walk will begin about 10:30 a.m. There will be train rides, a pony ride and the fun dunking tank! If you have a tee shirt from least year, please wear it. They were not able to get shirts this year, but I know this will be fun just because we are getting together to have fun.! PLEASE- RSVP to ynnlee at 623-580-9338 so they can know how many to plan for. This is a wonderful time to meet other families and share the love we feel for our children.

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"From My Heart to Yours..."
To me the best part of having a child who has Down syndrome is seeing life through their innocent eyes. Silly me. I thought when a child was born, and they told you he would be 'mentally handicapped', that meant my child would never really learn or understand. What I have come to know is they understand so much more than I ever imagined. Just by being David's mom I have been given, like you, the gift of an understanding heart.

It is through David that I am able to see in other's hearts. I love it when I can see how David's interaction with our world actually disarms people and any prejudices they may have. Others often are pleased and surprised when they realize all he is capable of. As you know, because I bore you with the details of my life, our son Seth just returned from his two year mission in Japan for our church. (Mormon) To a Latter-Day Saint, this is a really speical thing. Three nights ago our next son Luke, received his mission call. The night Luke opened his letter, telling us where he would serve, he invited many friends over. He was thrilled to find out he will be serving in the Philadelphia Pennsylvania mission. I don't know who was more excited, Luke or David. David has always been a part of this insane chaotic life that is ours.

He shares in our joys and our sorrows. When Luke announced where he was going, David immediately announced he was going with him. Of course my heart strings were tugged on. I know because of his disability, he will never serve a mission. But instead of telling him that I just smiled told him he would be a good missionary. I realized I was only putting off hurting him by not telling him he can never serve. David has difficulty comprehending some things, yet he truly understand others. But with something as important as this, it is almost as if he feels that if he tell me enough times that he is going, the maybe it will be so.

I have heard it expressed in some special education classes that we as parents grieve forever about the fact hat our child has a disability. I do not agree. I do believe the first and most important thing we do, is feel the sadness when we find out the news. But we find our tears are healing. As I have grown with my son, and have watched him grow; I know he is more than the label of Down syndrome. He is a great person as well. I have learned I need to extend the same dignity and respect to him that I would to anyone.

There are times I feel like I am the one with the disability. He loves all of life. He holds no grudges, unlike his crabby mother. He forgives and loves even when I, as his mother, lose it. God has blessed me incredibly to give me this son. But there are moments sprinkled into my life that do hurt.

There are times I wish I could make the world understand. Times when I want with all my heart, for others to see him and truly know him for the great person he is. Times when I wish I had all the answers but know I do not. I have come to know my life is not a map already drawn for me, but one I must discover for myself.

I love the simple moments that make me smile. On school days David rides his new dirt bike over to Blake's house, and I then pick them both up there.

Last week, David wore a white shirt and tie to school. (He often does this on game day because the football players do.) On that day as we drove, Blake was lovingly teasing him, for dressing up so 'spiffy'. David handled the remark in a rather mature fashion, by calling Blake a 'dork'. Then the two then hopped out of the car, and went into the school laughing and joking as any two teenage friends.

That afternoon, when I came to pick them up, David began to tell Blake about Luke going on a mission, and how he was going to go with him. In a quieter breath I told Blake David was just excited, but wouldn't really ever go on a mission. As the two of them talked further, David told Blake he wanted him to come to his church. Blake said that he goes to his own church, St. Anne's, but that David needed to go to his own so that he could go on a mission. Again David became excited talking about his mission.

I felt a twinge of pain in my heart, knowing that as great a kid as David was, he would never go on a mission. I knew Blake couldn't understand that. Even with those moments of sadness, a sweet comfort comes to my heart that reminds me that my Father in heaven loves David just exactly as he is. As I continued to ponder David's desire to go on a mission, Blake interrupted my thoughts.

"They have missionaries here don't they? I have seen them riding around on their bikes." I responded, "Yes we do." Then he replied, "Wouldn't it be great if they could call David on a mission right here! Then I could ride around with him and help him."

At that very moment I wondered how does Blake ever expect me to drive, when he keeps making my eyes fill up with tears? I don't know why or how, but Blake truly sees David as a friend. It melted my heart that this precious young man who is faithful in his Catholic church, was offering in his innocent way to help it happen so David could serve a mission.

Oh that I could know what David already knows. That people are good. He has that quality to see the good in the world. He has already learned unconditional Christ-like love. He has no prejudice or intolerance for others. I, however, have to work on that.

I believe that part of God's purpose in letting me be David's mom, is more for me than for David is to teach me yet I am a slow learner. There is nothing phony about David. He soaks in all of life, but never seems to see the bad. He is innocent.

He watches WWF wrestling and loves every minute of it. To him it is very real. He cheers his favorite wrestlers and thinks he is just as strong as they are. That same day as we drove further, Blake whispered that he knew what he was going to get David for his birthday. He asked if I wanted to know what it was and of course I did. Under his breath he said, "WCW is coming to town and I am getting him tickets and take him to go see it!" Oh Blake, how is it you see my son for who he is? How can you see so clearly what some others do not? You know his likes and dislikes. You even know what he is trying to say when I have difficulty understanding him. I don't wish life to go any faster than it is, but Blake Miracle, you are going to be really something some day. You already are.

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A few months back, Blake asked me if I had seen the movie "Simon Birch". I said no. He kept telling me how good it was and that I should see it. So dear parents, if you want to see a movie that will lift your heart in the most incredible way please see this one. (Not for kids, but something you must see) It will touch your heart, I promise. P.S. Bring some kleenex!

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1999-2000 Calendar
Oct. 23, 1999 Saturday Buddy Walk

October 21, 1999 Joan McCabe - Advocates Across America
"Your child's' IEP and how to make it work for you."

November 18, 1999 Duff McDougal & Dr. Nelson (Duff is a delightful young man who has Down syndrome and Dr. Nelson, a special education teacher at ASU) You will love this night!

December 4, 1999 Christmas Dinner Party with our favorite person! (Ho Ho Ho!) - Gilbert Jr. High School

January 20, 2000 - Betsy Trombino..."I'm okay with this, but how do I handle other people?"... How to talk to you mother-in-law and the grocery store clerk.

February 5, 2000 Valentine/ Sweetheart Dance (teens and young adults)

February 17, 2000 Sibling Workshop "I'm the big sister now."

March 16, 2000 Dr. Dan Kessler developmental pediatrician, Children's Rehabilative Services. / St. Joseph's hospital

April 20, 2000 to be announced

May 11, 2000 'Thank You Party' here at my home (note change from third Thursday to second )

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"Friendship is the inexpressible comfort of feeling safe with a person, having neither to weight thoughts nor measure words".
George Elliot

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