"I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience, to understand it, to imagine how it would feel. It is like this...

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Michelangelo David, the Gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say, "What do you mean Holland?" I signed up for Italy! I am supposeto be in Italy. All of my life I've dream of going to Italy!"

But there has been a change in flight plans. They've landed in Holland, and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place,full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never had met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for awhile, and you catch your breath ... you begin to look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was suppose to go. That's what I had planned."

And the pain of that will never ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that your didn't get to go to Italy you may never be free to enjoy the very special, the very lovely things about Holland.
By Emily Kingsley (Jason's mom)

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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

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My dearest friends,

Wow have I missed you! The summer has been crazy and busy but it's good to be back! Please come and meet my friend Marta Urbina who is delightful! Also I have a video clip to show you. You'll love it.

Who? Marta Urbina from "Raising Special Kids"
When? Thursday September 16, 1999
Where? Mesa Student Services Building
1025 N. Country Club (between University and Brown Road)
Why? "How can I make services work for my child?"
Time? 7:00 till 9:00 p.m.
Respite provided

1.) Nathanael David Nystedt -Dec. 18, 1998. Proud parents Annette & John Nystedt

2.) Joseph Cody Gates August 8, 1996. Proud parents, Judy and Rich Gates

3.) Randie-Jullianna Grace Reed -July 1, 1999 Winkelman, AZ, Proud parents Glenda Pierpont & Randy Reed

4.) Brigham James Brooks - June 11, 1999 Proud parents, Teresa and James Brooks

5.) Krystal Pryor Lee Cummings - Dec. 18, 1996 Proud parents, Donna & Bill Loomis

6.) Joseph Robert Motz -September 4, 1998 Proud Parents, Dena and Bob Motz

7.) Matthew Monsanto - proud parents, Linda & (sweet husband) Monsanto

8.) Collin David Spellicy -April 14,1999 Proud parents Susan & David Spellicy

9.) Michael Thomas Miller Proud parents, Anne and Tom Miller

10.) Joshua Joseph Reichert - April 21,1999 proud parents, Marie and Jeff Reichert

11.) new baby born to Cynthia Phillips

12.) Alexis Renee Trevizo -February 17, 1993 Proud parents Sylvia Ann Verdugo & Horacio Trevizo

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"How far you go in life depends on you being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and the strong. Because some day in life you will have been all of these."
--George Washington Carver

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I know many companies are asking for your donations to help others in our community. I was so excited to get home from Japan and find the IRS has approved us as a non profit agency. Our number is 86-0822557. The address is at the top of the page.

We are now officially signed up with the United Way. Boeing also contacted us because they wanted to make a donation to us as well. (Thank you Cervantes family! - Ramon, Theresa and Letecia) Nancy Gunderson donated to us through American Express and because she is a board member they are going to double matching the funds. (Life is good!) As you know 100 % of any money given to "Sharing" goes directly to parent support to please keep us in mind. Tell Aunt's, Uncles and Grandma's too!

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To say this summer has been challenging is an understatement but it's good to be back. I can not do it alone. I would like to especially thank some people who have gone beyond the extra mile to help me pull this all together..

Lori Marquette (proud mom of Jackson and Will) who is working on upgradingand placing our new parent packets and also creating our web site.

Alice Bayer (proud mom of Taylor and Joseph), who is creating a calendar we can use for fund raising and to send to new parents.

Maria Chokey (Janea's mom) is our fund raising chairperson who is doing all in her power to help us get the funding we need to serve our families.

Raquel Hoffman, (Blake's mom and new mom to Brianna) is our Spanish Sharingcoordinator.

Nancy Gunderson who always helps me and gives of her all even with a full time job and four kids.

And of course Maria Gray and Laura Worthy who have hung in there with me for 8 years to keep us going. You are all angel babies and I love you with all my heart. I couldn't do it without you.

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Each season brings joy and sorrow. This summer I loved visiting our daughter Catie in Florida, and picking up our missionary son Seth in Japan. But as Dorothy from The Wizard of Oz would say, "There's no place home."

In Japan I was surprised to find that I would experience 'culture shock'. It is hard to describe, but it is what you feel when you are in a city full of people yet feel totally alone and isolated.

Everything was so different. The language, the customs, even the bathrooms. I hated feeling like I had no clue where to go or what to do. The signs were written in a language I didn't understand and though the people were kind they couldn't really help me. Everything felt strange, even the food. (Yes, we were good sports and even ate 'taco yaki' ( fried octopus) Yum! :-)

In the streets of Tokyo and Fukuoka, though I was surrounded by crowds of people, I have never felt so alone in my life. I felt like I didn't belong there. It was a terrible feeling.

It wasn't until we met with our son Seth, that I began to feel better. He spoke the language fluently. He loved the people and everything about the country. He understood them and their culture. He even loves the strange food. As he was able to read the signs we then could make our way around the city. It felt better then.

I began to think how much we as parents of a child who has special needs, feel like I felt as a '"giejing" (a foreigner) in Japan. I needed someone to show me the way. I needed to know I was not alone. How much we are like that for other new parents. All each one of us needed when our babies came was a friendly face to show us the way.

I need you to help with new parents. Please consider being a "Pilot Parent" (0ne who shows the way) You already know what to do because you have been there. Please call Cynthia at 242-4366 (Raising Special Kids) to say you'll help. We need you.

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Have you ever notices that as parents of a child with special needs, wear our hearts on our sleeves. We take in every single thing, good and bad regarding our child to heart. What affects him, affects us.

Getting David in high school for the first time has been harder than I imagined. I knew he was the first to have full inclusion in our high school but I was unprepared for some of the negative attitudes I would encounter. I have to say the majority of teachers have been great. But there have been some hard times.

Sometimes when things feel hard I wonder why in the world do I do what I do? Why can't I just let go the normal path? Let him go to the 'special class' with the other 'special kids? It would be so easier on me. I have chosen the harder road. I know that. But something deep in my heart yells at me and won't let me do otherwise. With all my heart I believe my son has a place in this world. I can settle for less.

I am taking a training called "Partner's in Policy Making" My dear friends, I can tell you from the bottom of my heart, if you do nothing else in your life, you must make the effort to take training one day. Yes, it is a commitment. One weekend a month for six months. But you will never regret a minute of it. You will be given the tools and the knowledge to go forth with your child. You will understand the disability history and how far we have come. But you will come to know even more that you are a part of the history now. You are the ones who will change for course for your children.

After one particularly hard meeting for me with a professional at school about David I lost it. I spent the weekend crying and knowing it should not be this hard on anyparent. Have you ever noticed how sometimes God answers your prayers through another person? This day that other person was Lou Brown, a professor from Wisconsin, who had come to teach us. There is no way I can tell you all I gained from this man, but he opened my eyes to the many wonderful possibilities for my son.

When David was born I toured the newest most wonderful school in Utah, for children who had disabilities. I loved it. As we were leaving my friend Pat Christiansen asked, "Would you like David to go to a school this someday?" As I held my beautiful 4 month old son in my arms I replied with enthusiasm, "YES!"

Her words stayed with me for a long time. How could I let my most vulnerable child go to a 'normal' school and be thrown to the wolves? How could I dare risk that?

Teacher Comfort
Some special education teachers have become accustomed to the personal autonomy and professional independence associated with being the leader of a "special environment." They feel that if forced to function in a regular education classroom, they will be uncomfortable and less effective. In addition, many regular education teachers are accustomed to teaching 'to the norm' in their own classroom. If forced to teach students outside their usual range of intellectual functioning and to collaborate with special education teachers, they will become frustrated and less effective.

Homogeneous_Heterogeneous Groupings

According to some, when students with significant disabilities are based in special education classrooms in home schools, (meaning the school the student would attend if he did not have a disability) they can benefit from instruction in small groups with others who have similar disabling conditions. In these homogeneous groups they will feel accepted, learn from each other and experience success. If they are based in regular education classrooms, a special instructor will be assigned to them and provide too much 1:1 instructions; they will never feel or be accepted as equal members of the class; and they will rarely experience success in these highly competitive environments.

To others, the basic purpose of an educational program for a student with disabilities is to prepare for functioning in integrated environments and activities throughout adulthood. The closer the school program represents actual post school integrated life, the more valid it is as a preparatory experience. The more different the school experience is from the realities of integrated post school life, the more difficult it will be for a student to function therein. Putting two children with autism together in the same classroom so they can compete is absurd. Putting two people who are totally deaf and blind in the same classroom so they can feel accepted in meaningless and counterproductive. Putting two children with no arms and no legs in the same classroom so they experience success is demeaning.

The more disabled a student, the more the friendship, assistance and guidance of experienced nondisabled others is needed.

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Has David's life having inclusion been easy. No. But there are so many blessings that have come to make it worth it. The things that count to me, are ones that can't be described.

His best friend, Blake Miracle, is one of those blessings. Blake had come to sleep over and I heard them playing "Go Fish" (or Gold Fish as they call it. :-) (This 'articulation' card game was given to him by a beloved speech therapist, Mindy Douglas) They were having a great time.

As I passed by the door I couldn't help but stop and listen. I heard Blake trying to help David say the word correctly to match each card. Oh how that kid has a way of getting to me.

I did not know 15 years ago, David's best friend would be a very typical young man At that time I felt sure his lot in life was cast. My only hope was that at least the world would not be too mean to him.

I guess that's the part of life I love the most. It never turns out like you plan it. Blake and David have been friends since kindergarten. Blake is a is 'miracle' to me. He is a regular kid in every way. He is handsome, funny, good and kind. He is on the football team and is popular with the kids. Blake's dad is into body building and as a typical teenager, so is Blake. He goes with his dad each day to the gym to lift weights. He is a great kid. I love him with all my heart. As Blake and David's relationship grown, I have grown too. What I didn't know when I took the risk of letting David be in an inclusive environment, was how his life would change. I found out the word 'Inclusion' really means...

"Friends don't count chromosomes."

For many years I almost held my breath, wondering when Blake would grow up enough to realized how different David really was. I hoped when that day came I would feel thankful for what we did have but be able to act like it was okay, knowing inside that my heart would be broken, not just for me but for my son.

Sometimes we as parents, feel like we have to brace ourselves for the hard times that come. We have all felt the wounds of thoughtless remarks from insensitive poeple. We are so vulnerable. Sometimes our hearts feel heavy knowing that we do not have all the answers. Sometimes it feels like more than we can bear.

If I could only tell you one thing it would be to trust your heart. I want you to know that I know that God loves you and your child more than words can ever describe.

He is well aware of the challenges that are yours. That's why I love how Mother Teresa says it...
"I know God will not give me more than I can bear, I just wish he didn't trust me so much."

In addition to giving you your precious child, he has given you some thing else. He has given you the ability to know in your heart what is right for your child. At times you will doubt yourself, but in time, the answers will come. He will place people in your path who will make the road just a little easier for you. At other times He will use you to lift hearts. He will even let you hurt sometimes, knowing that after you have 'licked your wounds', you will become even more resilient and willing to do what ever it takes to help your child succeed.

This month after having battled just for the simple request of inclusion and the frustrations I felt, a great sadness, almost a depression, came over me. Sometimes the battle wears us down. Thank goodness for friends who let us pour our hearts out to them. I called Judy and just cried. She listened with love. After I finished she gently suggested maybe I had done all I could do and maybe now I should let go and just give in. I can't believe what her one sentence did for me. I thought of some freinds who felt the battle fatigue and did give up. My heart goes out to them and I understand where they are coming from. Yet a firm resolve came to my heart. With conviction I found myself saying... "God help us when we as mothers give up. Who will be there to stand up for our children? If we give up there is no one who can speak for them?" I could almost see the smile in her voice. She said kindly, "Gina. Listen to your words." It was wonderful. After listening to my tears she helped me to look my problems clearly and then she did the greatest thing. She gave me back my fight. She single handedly took away my defeat. Thank you God for the Judy's of this world who give us hope when hope is gone.

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This summer Blake was leaving for two months for vacation. I knew David would miss him. David kept reminding me of Blake's upcoming birthday. He wanted to buy him a skateboard. I promised we would. Well you know how life gets in the way. Blake was to leave the next day and we had not bought it. That night I peeked into David's room and found him so sad. He said, "Mom... Blake... Birthday." I felt so bad. I had really let him down. To my delight we found out the next day the trip had been postponed a few days. Blake came to sleep over.

As we walked he continued, "Ya know what I hate? I hate it when kids say 'retard'." Again I was taken off guard with his complete honestly. I told him about the story I published in our last newsletter about a twin sister of a young man who has Down syndrome and how she feels about that word.

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Our meetings will be held on the third Thursday of every month. We will meet at the Mesa Student Service Building 1025 N. Country Club from 7:00 to 9:00 p.m. Yes, child care is provided. :-)

September 16, 1999 Marta Urbina - Family Network Director "Raising Special Kids" "How can I make services work for my child?"

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!

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 7, 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

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

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