My Dearest Friends,
Have you ever noticed how it is the little things in life that make it so worthwhile? As I watch my life unfold I feel so thankful for all that God has blessed me with. Good friends like you, our beautiful children, kind people who make our path a little easier. I know that each kindness you do is like that little pebble being dropped into a pond. It creates many ripples that seem to go on forever. Probably not until we die, will we realize how much we have impacted the lives of others for good.
Before I go on, I want to let you know some good things coming up this month. Instead of our usual Tuesday night meeting, (on April 13th as scheduled) I wanted to have a Thank You party for you. A chance to gather together and just see a friendly faces and let you know how much each of you mean to me. :-)I find at each of our meetings, the time is gone and sometimes we would just like to come and visit and get to know each other. So if you want to have the time of your life, you have to come to my home for the party of your life! (It's about 20 minutes further east but darn well worth the drive!)
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What? A Thank You party to let you know how much I love you!
When? Saturday April 17, 1999
Where? The home of those crazy Johnson's
425 E.. Tremaine Ave. (in Gilbert)
(crossroads) Gilbert Road and Guadalupe, our home is two streets South of Guadalupe
just off of Burk Street (which is 24th street in Mesa)
Time? 7:00 p.m. until 10:00 p.m. or till the neighbors complain
Why? Just for fun this time with grownups! But our new parents do have to bring their tiny babies so we can 'ooh and goo' over them!
Respite? This party is just for us, but if you can't get a baby-sitter call me and I will make sure we have a provider here to watch our little ones. :-)
Goodies? Of course! But bring a pot luck item just for good measure!
Be There or Be Square!
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The one other great thing that is happening is the 14th Annual Special Day for Special Kids! It is sponsored by the Scottsdale Sunrise Rotary Club and Judson School. All are invited to join them for FREE carnival games, train rides, face painting, clowns, gallons, give aways, great food and LOTS of FUN!
Saturday, April 24, 1999 10 a.m. - 2p.m.
McCormick Ranch Railroad Park
Scottsdale, Arizona
Contact David Lewis at 451-9500
------------------------------------------------ Have you ever had a dream and when it begins to come true you are so taken back? This is what is happening to me. As you may know 8 years agoSharing Down Syndrome Arizona began. (Nancy Morgan, Anita Chavez, Kathy Hansen began the founding group 18 years ago) What we have today, began with only 6 families in my family room. Today we are over 529 strong. This might sound a little crazy to you, but I sincerely believe what we do in 'Sharing' is inspired by God.My dream is that no other mother will ever feel as sad as I felt the day my precious son David was born. I felt like my heart was breaking. My dream has been to touch people's lives for the good and let them know they are not alone. Many good people have donated to our cause. Desert Club helps each year by donating $2,500.00. Sweet grandparents, Polli and Brad Perkinson continue to donate generously to encourage us. Many of you have helped. This year Scott Gillette (a tax attorney) and his staff helped us to apply for our 501-C- 3(non profit) status. Lampson Neilson and Associates did our accounting. (both pro bono)
I know God blesses us to touch lives for the good. Last year I wrote to many companies to see if they could help us raise $15,000.00 to place new parent packets in some 12 of our birthing hospitals. I know there are 53 birthing hospitals, but it's a start.
Many had written back saying our cause was good but they couldn't help. On February 6th I received a letter from the Phoenix Thunderbirds. When I opened the letter I saw the corner of a check. I felt so thankful for what ever they could give. I almost fell over when I picked up the check and the amount. It was for $15,000.00! To me that was like a million! I know that money is ear marked for that specific cause of placing new parent packets but it helped me to realize we can make this happen. Most of us do all we can just to pay the bills and buy the groceries. I have never asked my families to give money. But if your company to non profit groups, please consider recommending us.
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A few weeks ago I took David to his basket ball practice with his WHAM team. (a basketball team with typical kids) His best friend, Blake Miracle askedif he could go along and watch. When we got there the practice hadn't begun, so Blake, David and a good friend from , Brian Koe, began to have a practice of their own. It was great! Every time Brian would make a basket, David would yell, "Lucky!" Yet when Blake would make a shot David would yell, "Skill!" I couldn't help but laugh as I over heard Brian giving David a hard time, playfully saying, "Hey David...How come every time I get a basket you tell me I'm 'lucky', yet every time Blake makes it, it's 'skill'?" David just laughed and shrugged his shoulders. I wish someone could have told me on that day of his birth that the tears I cried that day would one day change to tears of laughter. (both Blake and Brian are typical kids)
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A few nights ago there was a program aired that was called "Skin Deep". It told of a family who had a young son with Down syndrome. The family had chosen to have their son have plastic surgery so that it would change his appearance to make him look 'more normal'. The pictures of this little boy right after the surgery were heartbreaking to see. His little black and blue swollen face was hard to look at. These parents felt if they could make him look more 'normal', than maybe the "world" would accept him more. My heart goes out to these parents, and even more to this child. I am not here to judge. I know that each of us have to come to our own conclusions and decisions about what happens in our child's life. But how I wonder what these parents would have done if they had some time to let a little more of 'life' happen to them. They would then know that they do not have to make him look normal to fit in. They would begin to see the beauty in their child.Sometimes I even feel that it is precisely David's beautiful almond shaped eyes that tell the world something special about him. Perhaps at first glance they will only see the disability, but if they take the time to look deep enough, they will see those precious almond shaped eyes have the ability to see life as it really is, and to see us as we really are. To look without prejudice. Do I want to change that? Never. In our not so perfect world, does he have to look perfect? I say no. My hope is that we as a people will look at any child with any disability and see the beauty that our Father in heaven sees.
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"Man looketh upon the outer appearance but God
looketh upon the heart."
"It is only with the heart that one can see rightly;
what is essential is invisible to the eye."
Antoine de Saint Exupery The Little Prince
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I know that knowledge is power. As you begin your journey being your child's advocate there are things you need to know. My beloved friend Mikey Bixler, as a newborn healthy baby, developed spinal meningitis and that lead to encephalitis (infection in the brain) The disease ravaged his tiny newborn body. This disease left him with CP(cerebral palsy), and many other problems. The CAT scan showed he had 80 % brain damage. His parents were encouraged to consider institutionalizing their son because he would never be more than a vegetable. Thank goodness for parents who buck the system. They saw something in their son that the doctors did not. They decided to take him home and treat him as they would any child. That fact that he had CP, wouldn't be able to talk ,or use his left hand meant nothing to them. He is totally blind in one eye but that didn't matter either. They loved him and accepted him unconditionally. Even hearing them talk about him you will understand how they see him. Instead of telling you of his disabilities, they will tell you he is'differently abled'. They saw in their son a child who could do anything he set his mind to. Instead offocusing on what Mikey couldn't do, they focused on what he could. (Mikey cracked me up one day when he came into my signing class and in sign language told me a joke. He said, "What has 4 legs and no ears?" When I said I didn't know, he grinned as he signed the answer to me..."Mike Tyson's dog." Oh Mikey!As I have grown to know and love Mikey I could not help but love his parents. I have always known what incredible people they were, but it wasn't until Mikey wanted to show me his bedroom that I fully understood how they thought, and what they instilled in him. Among the walls plastered with Phoenix Suns posters and other 'good stuff' that any 11 year old boy would have, on his dresser sat a quote given to him by his grandfather. It says what they believe about their son...
"In the land of the blind,
the man with one eye is King."
..Voltaire
Oh that each of us could have that kind of understanding about our child. Mikey can only do sign language with one hand. With that one hand he has let the world know he is here! How blessed we are. How blessed your child is to have you.
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Opening my newsletter I shared some things called
"I've Learned." I have learned some things as ...
I've learned that knowledge regarding my child's rights
is power.
I learned that no matter how awkward or inadequate I may
feel as I stand up for my child's rights, God will put
the words in my mouth.
I learned that He also will put good people in my path to
help show me the way.
I've learned that each of us knows in our 'heart of hearts'
what is best for our child, regardless of what others may
say.
I've learned that though there is opposition in
things, and that at times life feels hard...I can make it
and it is worth it.
The most important thing I've learned is that God loves
me. I know that because He's given me a child who is
me to love as he does, unconditionally.
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I once saw a cute book called, "If You Meet a Dragon." Most of your experiences with your child will be positive. But should you ever feel discouraged if you someday do 'meet a dragon' in your fight for right for your child, here are some resources you can call to help you.
Center for Disability Law -274-6287
Today I spoke with the most amazing woman, Margaret Dumouchel
(pronounced Du-Michelle) She was incredible! Call between 1 -5 p.m.
and a staff advocate will help you. There is no cost for this service.
Margaret truly knows her 'stuff'. She is also a mom of a child with
special needs. (are you surprised?!) She faxed be the most
wonderful papers that talked about laws that went into effect
July 1, 1998 that will really make you understand the things your school has to
follow when writing your child's IEP. Maybe she can mail you a copy.
Also, please consider finding about the advocacy's training they can
give you. KNOWLEDGE is POWER!
ARC (Association for Retarded Citizens) 243-1787
The ARC is a wonderful group who have been around for years.
They were the first ones I know of who have tried to help
improve the quality of life for anyone with special needs.
They also try to help us as parents. They will provided
you with a trained advocate who will attend your IEP
meetings and help you get the services you
feel your child needs.. Call and ask for Mareen Taber.
(they ask a donation of $10.00 to $15.00 if
that is possible. (Also remember I can help you)
Raising Special Kids (formerly Pilot Parents) 242-4366
Great people who really care! Cynthia Henry, Marta Urbina,
Judie Walker, Kathy Pastores, Betsy Trombino, Luca Branum
many other wild and crazy people whom Ijust adore!
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Don't we LOVE potty training?!! Remember LBK (life before kids) when you could actually talk to someone about something besides potty training?! Well a great book, Once Upon a Potty by 'Frankel' will help you so much. You can get it at Borders Books and Music in Mesa for $5.95 (833-2244) (different version for boy or girl) :-) or you might be able to order it through Amazon Books on the internet. Jimmelle Hooks said it worked wonders for Christopher.
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Each you may know, I do not 'advertise' in my newsletter. That is not what our newsletter is for. A while ago I had asked Annette Petzel and some associates of her from "Dignity Group of Arizona" to come and talk to us about financial planning for our children who have special needs. I was hesitant because I never want anyone to make a profit off our parents. To my complete delight and surprise they did just what they said they would. They educated us but in addition, they let us know any consulting they do to help parents of children who have special needs is done strictly as volunteer work. That truly impressed me.
I am please to recommend them to you. If you would like more information please call one of their volunteer counselors... Annette Petzel, John May or Ray atThe Dignity Group of Arizona
13416 N. 32nd Street. #100
Phoenix, AZ 85032
482-3333
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The Ten Commandments for Parents of Children with Disabilites
1. Take one day at a time, and take that day positively. You don't have control over the future, but you do control over today.
2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.
3. Find and allow positive mentors; parents and professionals who can share with you their experience, advise, and support.
4. Provide and be involved with the most appropriate educational and learning environment for your child from infancy on.
5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
6. Answer only to your conscience; then you'll be able to answer to your child. You need not justify your actions to your friends or the public.
7. Be honest with your feelings. You can't be super-parent 24 hours a day. Allow yourself jealously, anger, pity, frustration and desperation in small amounts whenever necessary.
8. Be kind to yourself. Don't focus continually on what needs to bedone. Remember to look at what you have accomplished.
9. Stop and smell the roses. Take advantage of the fact that you have a gained a special appreciation for the little miracles in life that others take for granted.
10. Keep and use a sense of humor. Cracking up with
laughter can keep you from cracking up from stress.
Author Unknown
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Sharing Down Syndrome Arizona ! Inc.
Gina Johnson
425 E. Tremaine Ave.
Gilbert, AZ 85234
602-926-6500
(e-mail) gina.j@juno.com
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"I know God will not give me more than I can bear,
I just wish He didn't trust me so much.
Mother Teresa