Dearest Friends,

I so enjoyed Chris te Kampe coming to our last meeting and sharing with us what he has learned about not labeling our children. Thank you Chris, for reminding us to always see them as a child first and disabled second.

For our June meeting I want you to come to my home for a pot luck dinner. If it's cool enough we'll be in the back yard. If not, we can move inside but just don't look at my messy laundry room! Come with your children, prepared to have fun!

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As you may know our mission statement reads in part... "Sharing Down Syndrome Arizona inc. is a non-profit parent support group whose main goal is to strengthen the family unit of parents who have a child with the disability known as Down syndrome. We welcome all families, regardless of their child's disability, or their families race, creed or religious beliefs. Though we differ in many ways, the love we feel for our children is universal.

We are all parents who remember how hard it was for us the day our babies were born. As we have had to go through that hard, yet natural grieving process of finding out our baby has a disability...we have learned they are wonderful people who have so much to offer. As seasoned parents we are there for others to help make their journey a little easier. We want no parent to feel alone.

As we educate and empower parents, they learn how to be the best advocates for their child. We want to not only make a difference for the good, but to give hope. We are more than just a parent support group, we are friends. We share our joys and sorrows. We are there to help with the unique challenge of raising a child with some special needs. We want to help others see our child as a child first, and disability second."

If you don't mind I would like to share something personal with you. I know we all come from different religious and I mean to offend no one. I know what you believe in your heart to be true, is as sacred to you as my beliefs are to me. But please permit me to share some my perspectives as a member of the church of Jesus Christ of Latter-Day Saints (Mormon). I could not even begin to tell you who I am or what my son David means to me without letting you know I believe in, and love God and Jesus Christ with all my heart. It is because of them and the understanding they have given me that I feel the way I do for my son.

As a Latter-Day Saint, we believe when a person is born with a disability, it is only his mortal body that is disabled...we believe the spirit inside of him is most pure and good that God could find. I personally believe our children have come to teach us how to be better people. They teach us unconditional love.

Last night, after we read our scriptures and said our family prayers,Something cute happened. It was one of those 'Kodak' moments of the heart that aren't really that big of a deal, but for some reason they mean a lot to you.

David (our 14 year old son who has Down ) began flexing his Biceps ...showing us how big his muscles were. ( It's a 'guy thing' when you have three older brothers to impress!) Before we knew it, he was wrestling his dad down to the floor. (Did I mention he thinks WWF wrestling is pretty cool?) When David succeeded in 'pinning' Dad on the floor, he got great delight in calling him--"Whimp!"

Very quickly our 9 year old Samantha and 7 year old Emily joined in the fun!. As I sat there I felt so thankful for a Dad who can laugh and be playful.

Yet I flashed back to the day David was born. I thought of how much Curt and I cried. Of how our hearts . We have come so far since then. The sorrow that we felt on being told David had Down syndrome was over-whelming. But here we were..being a very (well-sort of) 'normal' family just horsing around and having fun. I realized David wasn't different ...it is we who had changed.

It is with all my heart that I tell you the birth of your son or daughter is one of the greatest gifts God could give you. You will become like the little boy in the child's story, "The Emperor's New Clothes." You will gain the ability to see things as hey really are. And you be the only one who will have the courage to tell others what you see. A recent movie, 'City of Angels' someone said...
"Some things are true, even if you don't believe them."
The truths I've learned is that David is a wonderful young man who feels things deeply. The fact he has a mentally disability does not change that in any way. He can make me laugh, like the time he was maturing physically and proudly wanted to show me his "mustache"! (But don't ask him to show you, because it's not on his face!!!) Or when he was a little boy when he watched the movie "Free Willey" and then opened the gates of all our neighbor's fences freeing their dogs and yelling... "Free Willey....Free Willey!!! I remember too, how sad he was last July when his older brother left for his 2 years mission to Japan. David just hugged him so tightly and didn't want to let go. Now he wants to sleep in Seth's bed every night almost as if to remind me that Seth is gone but not forgotten.

On birthdays David is always the one who will wrap his most prize possession and give it to you When he was born my mom, who is not of my faith, asked "Why is God punishing you like this?" If she could have understood that David's birth is not a punishment, but rather a blessing in disguise. And that each night as I say my prayers I thank God for him as much as I do for all my 7 children.

"The trouble with being a parent is that by the time you are experienced, you are usually unemployed."

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We Need Your Help!!!

On May 23,1998 our Board of Directors met for a general meeting. We realized because we are growing so fast we need your help. And many of you have offered so here goes...

1. Programs---Plan monthly meetings and arrange speakers.
2. Financial ---Fund raising, donations, grants.
You all know how I do not ask our parents for money to help keep this good work But we do need parents to help with grant writing proposals and locating sources that would be willing to donate. Our 501 (c) (3) non profit status is pending so that should happen soon. When we are tax exempt, companies can donate and do not have to pay taxes on what they give. Or if your employer has any matching fund program or would like to donate to a charity that helps one of it's own employees, please let me know! Recently Jamie Luna and Diane Berg told me to write to their companies because they wanted to help. Thank you dear ones!
3. Socials--- Christmas Party, Summer Picnic/ BBQ, and Valentines Dance. This year on the first Saturday in December in the afternoon we want to have our Christmas party. We want to have a carnival with games, fun and food. Of course we will invite Santa and if you would like to bring a gift for Santa to give you child, that would be great. We need people to organize games, and be on the decorating committee. We also need some of your to go to various places and ask them to donate food.
4. New Parent Outreach, and dinners---We need volunteers to find new parents, be willing to make hospital and home visits. You don't realize it but you already know how simply because you have been there. Your friendship and love is all they need. We also need people to help bring dinner to new families in the first few days after they come home. Remember how good something tastes when you don't have to prepare it?!
5. IEP's---Parents who would be willing to attend IEP's with other parents as moral support and advocates. Having gone through the process yourself you know out 'out numbered' you can feel at those meetings. It is great to have a friend along.
6. New Parent Packets and Other Projects---Taking new parents packets to hospitals for them to give new families and to spend a little time visiting with them to let them know they are not alone. Also you can visit with social workers and nurses to let them know we are here for families. One of my goals for Sharing is to place at least 12 new parent packets in our local birthing hospitals so a new family can receive positive information and gifts the day their baby is born. (my life long dream is to have some in ach of the 58 birthing hospitals in the state.) The new parent packet includes a journal with free imprinting with the baby's name, a baby tee shirt that , "All Children Are Special", an audio tape, "Far Different Places", a video tape of our kids called "Love Grows Here", a wonderful book called Hope for the Families, a book called " Babies with Down syndrome, a new parent guide", and other inspirational and positive thoughts. Each packet cost abou $80.00 but it is the sweetest thing we can give them, because it also brings hope. Also to help with future projects as money become available.
7. Newsletter Committee--- We need some who can come to my home and help me put labels on newsletters and get them mailed once a month. When we were small it wasn't so hard but now that we mail to over 435 families it takes more time. Please call Maria Gray 396-8154 to tell her what you would like to help with.THANKS!!

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New items in our lending library:
* Babies with Down syndrome , A new parent guide, by Karen Stray-Gunderson
* Hope for the Families by Robert Perske
* Book -Teaching Reading to Children with Down Syndrome
* Inclusion...a Guide for Educators by Susan Stainback William Stainback
* The Paraprofessional's Guide to the Inclusive Classroom by Mary Beth Doyle
* The Seven Habits of Highly Effective Families by Steven Covey
*Video and book- Early Use of Total Communication by Betsy Gibbs and Ann Springer
* Changed by a Child wonderful uplifting book by Barbara Gill
* A Recipe for Life--video tape... (4 minutes) thoughtful tape that will lift your heart
* Moments of reflection -.video tape...uplifting and tender, by Patty Valetzko
These last two videos are so great. When you have your IEP I highly recommend showing "A Recipe For Life" before it begins to set the tone. Patty Valetzko has done an incredible job on these.

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Because she does not have enough stress in her life, my wild and crazy friend Kathy Mutschler has a play group in Scottdale that meets every other Friday for two hours. (next one on May 29th)To find out more please call- 990-8909 (she also does Day Care)

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Phoenix Koffee Klutch meets once a month. For more information call Pilot Parent Partnerships 'Peggy' at 242-4366

Our Spanish speaking contact for our "Sharing" parent support group is my dear friend Raquel Hoffman. If you need her, please call at 357-9594

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Last but not least!...

There is something really important coming up. I know in a way when you read this material you may feel like you may not have the time to do the laundry, let alone gain some extra training... so you may be tempted to disregard it. But I promise you, if you will make the sacrifice to make the time... you will be blessed and sowill your kids.

We all know that all that is necessary for evil to prevail in this world, is for good men to do nothing. The same goes for good. If each of us as an person gets involved in just one good cause, how much better our world could be. My dear friend Cori Suman, told me about this training. She attended a few years ago and she said it was the best thing she has ever done. She told of listening to a speaker who told of being raised in an institution his whole life and the injustices experienced there. Those working with him didn't understand that having cerebral palsy didn't mean he didn't understand what was going on. They even spoke in front on him to others that he was a 'vegetable'. Please take a moment to read it and consider becoming one who will make a difference for the good for good. Pilot Parent of Southern Arizona is seeking for Partners in Policy Making Program. What is Partners? Partners in Policymaking is an innovative leadership training program for parents of children with disabilities and for adults with disabilities. The program is designed to information, training, resources and skill building to people with a disability and parents of children with disabilities so that they can become better advocates for themselves or their children. Partners provides participants with opportunities to meet and talk to national leaders in the field. Participants will have an opportunity to meet and unite with others who have similar concerns to create a powerful voice on important issues. They will learn how the legislative process works at the local, state, and national levels. The goal of the training is to develop productive partnerships between people who need and use services and those in a position to make policy and law.

What is Your Role As a Partner?
* You must make a commitment to attend eight weekend sessions between August, 1998 and March 1999. All sessions will begin at approximately noon on Friday and conclude by noon on Sunday. Respite care and all accommodations be provided to participants.
* Complete all homework assignments
What Topics Will Be Addressed?

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