March, 2000

~Sharing News~
Newsletter of "Sharing Down Syndrome Arizona
March, 2000

My Dearest Friends,

Don’t you find it amazing as a parent of a child with Down syndrome we quickly go from knowing nothing about this disability, to feeling like we are an expert? Yet it is nice to be able to talk to someone who really knows what is going on.

This month we have the privilege of hearing from Dr. Dan Kessler, head developmental pediatrician at "CRS" – Children’s Rehabilitative Services. He is a wonderful man who will come to share his knowledge regarding specific questions we may have about Down syndrome. This will be a wonderful time to talk to an expert who also happens to think our kids are pretty great!

Gina Johnson

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Pictures

We need more pictures for our "photo gallery" on our website. Please share with us, and all our cyber visitors, your favorite picture of your child with DS (they can be by themselves or with other loved ones). You can hand them to Gina, Lori Marquette or Martha Vance or mail them to Gina or e-mail them on JPG format to:

LoriMarque@aol.com. We will make sure you get them back.

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El contacto de habla hispana para nuestro grupo de apoyo a los padres "Sharing" es Raquel Hoffman, si necesitas de ella por favor llamala al (480)357-9594

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Next Meeting
East Valley Meeting:

Thursday March 16th, 7-9pm
Mesa Student Services Blding
1025 N. Country Club
(East side of Country Club between University and Brown Road, across from Mesa Lutheran Hosp.)
About: Health Issues of DS
By Dr. Dan Kessler from Children Rehabilitation Services. Respite care will be provided Please enter through outside nursery door,
the one farthest to the east.

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West Valley Meeting:

Tuesday March 14th,7:30pm
At St. James Catholic Church
19640 N 35th Ave./Glendale
About: Financial Planning
By Dignity Group of Arizona.
How to plan financially for a person with a disability.

Respite care will be provided

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From my heart to yours...

Curt and I are often asked why we chose full inclusion for David’s school program when it would have been easier go with what was being offered. (i.e.- a segregated Special-Ed setting).

It wasn’t that we didn’t think the teachers weren’t good people…most often, those who go into Special Education do so because they are kind-hearted people who look for the good in all children. Yet early on, we began to understand that "Special Education" is a service, not a place. Of course David needed accommodations like speech therapy, so we made sure those needs were built in to his IEP. (Individual Educational Plan). But to us, having the opportunity to grow up with his non-disabled peers, was as important as gaining the ability to learn to speak. Our choice was to have David attend the same age appropriate class and school he would attend if he did not have a disability.

There are many things we can do for our son. We could love him and provide a nurturing home for him. But the one thing we could not do, was to be his best friend. No matter how much we loved him, we could not be the one who would invite him to go for pizza, ride bikes, ride to Jamba Juice, jump on the trampoline, play Nintendo, or to go a hockey game. We could not ask him to join "Gold’s Gym" with us and then take us to work out. The only person who could do this would be his best friend. I have spoken much about his very typical friend, Blake Miracle (their picture is on our web site). Recently I asked Blake how others react to the friendship he has with David. He smiled, and said that he has lost count of how many times people have asked him if David is his brother. They are united not by blood, but by something even better. It is their friendship and love that keep them together.

As a kindergartener, Blake never knew David was different. In 6th grade when Blake asked me to let David join his roller hockey team, I was afraid. Though David is athletic, I didn’t think he could do it. At the first game I thought I had made a serious mistake. I felt so embarrassed. As I sat there, I saw the rest of the kids skating after the puck, and playing hockey, yet David was not with them. Over on the other end of the rink, I spotted him in his white #11 jersery, skating around in his own little world, totally oblivious to what was going on.

I’m sure people weren’t really looking at me, but I felt embarrassed anyway. I wondered if I had taken this "inclusion thing" a little too far. As quickly as those feelings of inadequacy regarding my son came, they left and another feeling came in their place. This sweet feeling spoke to my heart and told me David does not play by the same ‘rules’ as the others kids, and that it was okay. As I allowed that feeling to permeate my heart, a comfort came to me. My only hope was that by the end of the season, David might at least know there was a puck and that he was to go after it.

Well, my sweet parents, not only did he know it was there, but he was going after it with all his heart. Was he ever the fastest or best hockey player? Not a chance, but he loved being a part of the team. He even thought it was cool to check his opponent and have to sit in the penalty box. I feel certain, it was the team who let him score, but the first time he did, and they stopped the game, and let him skate to me bringing me the puck. I have that puck on my dresser, and when I look at it, I get teary, remembering.

In a way, our children’s educational process is much the same as his hockey game. If needed, we change some of the rules. We gear the curriculum to our child’s ability level, yet we encourage him to be the best he can be. David has had some wonderful regular Ed. teachers, but the greatest teachers he has ever had, have been his peers. It is through them he has learned how to fit in.

Only you can decide if inclusion is for you. Please know that I love and support you in whatever decision you make. But I must speak from my heart to tell you what I see. I encourage parents to fight for full inclusion from kindergarten on. (David was lucky enough to have it in preschool.) The great thing about little kids is that they see no differences. To them, if a child is in a wheel chair, or has CP, or has Down syndrome, it doesn’t matter. To them that person is just a kid, no more no less. What a wonderful ‘blindness’ they share, to see beyond the disability.

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There are some insights that I would like to share with you. The IDEA (Individual with Disabilities Educational Act) is on your side. Get a copy of it and read it. The toll free number to get a copy is 1-877-433-7827. Or can read/download a complete copy of IDEA and the regs, plus lots of useful

information at:

http://www.wrightslaw.com/

Also remember…

1.) In the educational process there is a thing called "stay put". If you agree to one placement (at another school, or in a segregated setting) and then later feel that was not a good choice, the school has the right keep your child in that placement until things are resolved, whether through mediation or due process.

2. ) NEVER go to an IEP meeting alone. You have the right to bring as many people as you feel comfortable with. I strongly encourage dad to go with mom to each meeting. I know it is hard to get off work, but not only will give her strength emotionally, you, Dad, will understand how important your role is in this. Having dad there sends a strong message that you are united. Also, make sure to bring your case manager with you from DDD. He or she can be one of your best allies. Suzan Miles is ours, and she is awesome. She strengthens us because she is not afraid to stand up for our son and us. Bring a trusted friend or advocate to be moral support. It will feel great!

3.) Always remember to bring a tape recorder to every single IEP meeting you have for your child. You have that right, not only will you remember more clearly decisions agreed upon, but can I be brutally honest with you and tell you that when you do this, there will be a whole different feeling in that meeting than if you do not.

4.) Draw an imaginary "line in the sand" in your mind of what is important to you. Know in your mind what you want for your child and what you will not budge on. Also make a list of things you want listed in the IEP. One of ours has always included "David will be educated in the least restrictive environment with his non-handicapped, neighborhood peers." We also agreed to send a communication journal back and forth each day so we would know what was really going on.

5.) Be gentle with the teachers and those who work with your child. Smile and thank them for the good you notice. They are good people who truly care. But if someone suggests something that just doesn’t feel right, just say, "Thank you, but I just do not feel comfortable with that." You have not stepped on toes; you only have stated your feelings.

6.) Know that no matter what, the one in that meeting who cares the most about your child is you. You are the "I" in the IEP. You make it individualized. Don’t be afraid to speak up and say what you feel in your heart. Teachers give 9 months to a child. You give your whole life.

7.) If, in the worst-case scenario, things are looking bleak, remember that you are in charge. If what they are offering is not what you feel good about, then you need to say so. The only one, who can be your child’s advocate and speak up for him or her, is you! Speak the truth. When we were trying to get David into full inclusion in 7th grade all that was offered was a segregated setting. Instead of feeling overwhelmed and crying, which I am very good at, a peaceful feeling came to me. In a very matter of fact way I found myself saying, "I can see that in the time we have left, we aren’t going to have enough time to write and accurate IEP, and what you have recommended is totally unacceptable to us, so I am closing the meeting. If you would like to get together again with me please feel free to call." Then we got up and walked out. I have to tell you, Suzan, my friend and social worker about fell over. She later asked me what ever happened to "Mousey Gina?" I had to smile. I’m not sure what happened to her, but I think she was replaced by "Crabby Gina"! Long story short, David was given full inclusion. I am not saying to bully your way. But I am saying it is important to remember who you are fighting for and why.

8.) Don’t be intimidated. Our son is very language delayed. After years of a little speech therapy, here and there, I spoke up. I said (in 7th grade and ever since) we wanted 20 minutes a day of one on one speech therapy to help his articulation. A psychologist challenged me saying that if they gave that much time to David, it would take needed time away from some other child. I told them the only child I cared about was my son and if that kid’s mother wanted more services, then she should stand up and say so.

9.) Provide an Aide. For David, we have always known it would be unfair to just toss him in a regular Ed. class and hope for the best. This would be unfair to the teacher and to him if we hoped for success. So we made sure each class he was in had an "IA" (Instructional Assistant) to help with him and the other students. Any teacher would love an extra pair of hands and eyes to help her.

I have had the advantage of seeing how David’s life has unfolded with him having inclusion vs. his friends who have not. Here is what I see. Kids who grow up being segregated, or just having "mainstreaming" (being pulled into specials like PE, Art, Lunch, Music etc.) never really fit in. When they are pulled in to the regular classroom setting, they are hyper-vigilant about their surroundings and the other kids feel awkward as well. The older children get, the more separated they are in Jr. High and High School. Most of their academic learning is over. In High School in the self-contained settings, the kids learn to do things like wipe off tables, sweep floors and clean up after the typical kids in the cafeteria. They put cookie dough on baking sheets, and push the pastry cart around to sell items to staff members. They go on field trips to the dental office and bowling. Not that these things are not good. The kids learn how to count money and interact with the public, but to me they do so with their heads down. In my opinion, it is my job as a mother to teach him self-help skills. I do not want my child to do what other typical kids do not do. I personally feel we are doing our kids a disservice if all we think they are capable of, is sweeping a floor or stacking a can on a shelf. They are people first, who deserve the same respect and dignity you would give any person.

I know that when you seek for inclusion, you are taking a risk. And yes, for much of your child’s life you will be wearing your heart on your sleeve. But it is worth it, I promise. You don’t know it yet, but God will place many people in your path who will help you. There is no such thing as the perfect school district. My dream is to have each one of us become active in our school system and the process behind it. It is not a matter of moving to the right school district…it is a matter of making your district the best it can be.

I am 48 years old. When I was growing up, it was before the Civil Rights movement. I remember the first day kids who were a different color than I, were bussed to my school. Thankfully, I had parents who taught me early on, that you judge others by their hearts, not by the color of their skin.

I truly believe that one day, having our kids separated and segregated because of their disability, will be as wrong as it was to segregated kids because of their color. Letting typical children grow up with our kids provides a great blessing for both. It teaches that we all belong –no matter what.

There are so many reasons for inclusion that don’t even deal with school at all. You will know what I mean the first time your child is invited to a sleep over or a birthday party. But the greatest reason is one I never expected. Last Saturday night there was a dance and a few of the girls at school asked David if he was going to go. So he showered, dressed in his Sunday best and even sprayed a little of dad’s cologne on. Like an insane woman, I drove him there and then stood in the shadows hoping all would go well. (He wanted to ditch me the moment we walked in the door).

There I saw a young man, just as awkward and nervous as the rest of the boys standing around with their hands in their pockets. But pretty soon a sweet girl came and asked David to dance a slow dance with her. I thought my heart would burst with a combination of happiness and tears. She showed him how to place his hand on her waist and there they danced. He was soaking in every moment of it and I was too. And he loved to fast dance. Sometimes he would just stand at the side, but for the most part, the guys and the girls all dragged him on to the dance floor, and you would have been hard pressed to see who was the typical kid and who had the disability.

On the last dance, tears were in my eyes as I watched David stand alone and I heard the Back Street Boys singing, "Tell me the Reason for Being Lonely". I figured every girl there would rather be dancing the last dance with the boy they really liked. Yet there came two sweet girls who asked him to dance. He chooses the taller one.

What has Inclusion given David? Things that can’t be measured…a best friend, a chance to belong, a chance to feel good about his life, and most importantly, a chance to just be a kid. David even once got in trouble when he tried to forge my signature on a not so great progress report from his teacher. The only way she caught on was that after he signed my name, he signed, "Mom." (and I loved it!)

Love, David’s Mom

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Our Web Site Address has changed!!
our new website:
www.psln.com/~sharing.
I am excited for you to look at it, and give me any feedback that you feel is appropriate. I am going to add 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.

Lorimarque@aol.com

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Gina, I want you to know how Riley is doing. She is doing much better than I am, that's for sure. She is so blessed with such a great outlook and attitude about everything. I am certain that when we get to heaven, nobody will have cancer but EVERYBODY will have Down syndrome. The joke is on us here on earth. We strive to make them like us when all the while, we are supposed to try to be like them. Ironic! I Love You! -Annie Hoyle

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News From the West Valley

Thanks to Marta Urbina from Raising Special Kids, once more, for coming to speak to us on February about the different services our children receive.

On our next meeting we will be talking about financial planning for our kids with disabilities. This is a very important topic because people with disabilites who have money or property on their names might not qualify for some services, or the State can take their money for payment of services rendered.

Please come and join us!

Martha C. Vance

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I think many of us believe, people with disabilities bring amazing gifts to our world, that are unmeasurable by any ordinary standard, and priceless by all standards. Cheryl Ward

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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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When tomorrow starts without me, And I'm not there to see; If the sun should rise and find your eyes All filled with tears for me; I wish so much you wouldn't cry The way you did today, While thinking of the many things, We didn't get to say. I know how much you love me, As much as I love you, And each time that you think of me, I know you'll miss me too; But when tomorrow starts without me, Please try to understand, That an angel came and called my name, And took me by the hand, And said my place was ready, In heaven far above, And that I'd have to leave behind All those I dearly love. But as I turned to walk away, A tear fell from my eye, For all my life, I'd always thought, I didn't want to die. I had so much to live for, So much yet to do, It seemed almost impossible, That I was leaving you. I thought of all the yesterdays, The good ones and the bad, I thought of all the love we shared, And all the fun we had. If I could relive yesterday, Just even for a while, I'd say good-bye and kiss you And maybe see you smile. But then I fully realized, That this could never be, For emptiness and memories, Would take the place of me. And when I thought of worldly things, I might miss come tomorrow, I thought of you, and when I did, My heart was filled with sorrow. But when I walked through heaven's gates, I felt so much at home. When God looked down and smiled at me, From His great golden throne, He said "This is eternity, And all I've promised you. Today for life on earth is past, But here it starts anew. I promise no tomorrow, But today will always last, And since each day's the same way There's no longing for the past. But you have been so faithful, So trusting and so true. Though there were times you did some things, You knew you shouldn't do. But you have been forgiven And now at last you're free. So won't you take my hand And share my life with me?" So when tomorrow starts without me, Don't think we're far apart, For every time you think of me, I'm right here, in your heart. When Tomorrow Starts Without Me (Author Unknown)

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We need to stand up for our kids even when it is hard. I have a dear friend, who has a four-year-old son, Josh, who has Down syndrome. I sat with her at a meeting at "Sunrise Preschool" after he had attended for two days. Very briskly this sweet mom was told her son could not attend there anymore. She was shocked. The Special Ed Director said they had "serious safety concerns" about Josh and didn’t feel they could accommodate him. When we asked what those concerns were we were told Josh would run out to the playground instead of following the line to the classroom. At recess he had put some wood chips in his mouth. In class he would not always follow the rules. He even had the nerve to put a crayon in his mouth. I was stunned and felt sure they couldn’t do this.

I thought how any child, but especially one who has a disability, needs time to ‘learn the ropes’. I asked if we were able to get him a ‘one on one aide’, could he then stay in their program. We were told absolutely not. I thought this was insane. I am well aware that the ADA (American’s with Disabilities Act) states that, "Public accommodations, including child care centers, must make reasonable modifications in policies, practices and procedures in order to accommodate individual with disabilities."

Yet through whatever loophole they find (safety concerns) they can still kick our child out because he is not acting typical. (I am sure no other typical kid would ever do those things!) Did Josh ever kick, bite or hit? No. But it didn’t matter. I felt so angry. I thought the poor little guy has only been there for two days. Josh was not only acting like a little kid, he was acting like a little kid who has a disability.

But it does not mean he cannot learn what is expected of him, given time and direction. How do they ever expect him to learn if they don’t give him a chance? I have often likened Inclusion to teaching me to swim. You can show me how to wave my arms and kick my legs, but if you don’t put me in the water it really won’t mean much.

Later a man from DDD (Division of Developmental Disabilities) called to talk to Josh’s mom. He expressed surprise that she would even want her son to return to a place that made it clear they didn’t want him. I thought of Rose Parks and how thankful I am that she didn’t sit in the back of the bus simply because others felt that is where she belonged. Yeah, Rose Parks, and yeah Josh’s mom. It has taken humble people like these sweet ladies to have the courage to tell the world they are wrong!

I know our education system isn’t perfect, but it’s parents like you who will make the difference.

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"Sharing News"
is the newsletter of "Sharing Down Syndrome Arizona, Inc.".
It is produced September through May each year.
There are no subscription charges.

"Sharing Down Syndrome Arizona! Inc."
is a non-profit agency. We appreciate your support.
If you would like to make a donation to SDSA,
please send it to:

Sharing Down Syndrome Arizona! Inc.
c/o Gina Johnson
425 E. Tremaine Ave.
Gilbert, AZ 85234

(480) 926-6500

All United Way contributions need to be earmarked with our address and phone # above.

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