September 1999 Issue

Our next meeting will be held on Friday, October 1st at 6:30 p.m. at Christ Episcopal Church, 125 South Seminary in Collinsville. Vickey Few will be the guest speaker on Down Syndrome Future Issues: Into Adulthood. Contact Tamara Rampold for meeting driving instructions.

October is Down Syndrome Awareness month. Let us take the opportunity to develop public awareness in our community around our children with Down syndrome.

STARnet Illinois Region IV Workshops
October 1-2. 1999 Enriching Young Lives, Southern Illinois Early Childhood. SIU-Carbondale Student Center. Contact: Lori Longueville, Conference Chair at the CCR&R, 1 (800) 232-0908.

Regional Events
October 3, 1:00 p.m. 5th Annual Buddy Walk, Down Syndrome Association of Greater St. Louis. Quenny Park, St. Louis County. Refreshments and picnic following the 1.5 mile walk. $7 per "Buddy Team" (includes 2 T-shirts). For more information call Hank or Janice Schuppert at (636) 532-9957.

blank.gif  October 24-26. 8th Annual Institute for Inclusive Education, Reaching All Learners featuring Thomas Armstrong: Eight Kinds of Smart; Alan Gartner and Dorothy Kerzner Lipsky: Realistic Classroom Approaches; Freeman Hrabowski III: Beating the Odds; David Pelzer: A Child Called It; Jeff Strully: Creating Desirable Futures; Richard Villa: A World View of Inclusion; Gwen Webb Johnson: Managing Problem Behaviors. Renaissance St. Louis Hotel. Registration: $310, price includes keynotes, luncheons and materials. For more information call (314) 516-4523 or (800) 478-5684 ext. 4523.

November 1-3. Sharing a Vision: Making It Happen, Early Childhood Conference. The 6th Illinois Statewide Collaborative Conference offers professional, educators, administrators, and therapists who work with children ages birth through seven, and the parents of young children opportunities to learn about new trends and policies in the early childhood field. Keynote speaker: Dr. Raymond J. Golarz. Conference features include an evening presentation by Jim Gill and two full days of informative workshops. Cost: $85. Crowne Plaza Hotel, Springfield, IL. Contact: Susan Ferry (217) 824-4476, E-mail: sdferry@aol.com

November 4-6. ICEC (Illinois Council for Exceptional Children) Fall Convention. Arlington Heights, IL. Contact: Joyce Meyer (847) 360-5473, E-mail: jmeyer@mail.wps.lake.k12.il.us

Resources
October 5- November 23. Water Babies and Pre School Swim. YWCA of Alton, 304 E. Third Street, Alton, IL. 6 months - 3 years: 9:00 a.m. 3 to 5 years: 10:00 a.m. Cost $40 member, $50 non-member. To register: 465-7774.

moonlight is the newsletter of the Riverbend Down Syndrome Association. It is made possible by the William M. BeDell Achievement and Resource Center, 400 South Main, Wood River, IL 62095, (618) 251-2175.

Editor: Victor Bishop
Web Site: http://www.riverbendds.org/


Play Pals Gym offers little ones a lively combination of music, singing, rhythm and activities. Play Pals Winter Session: November 1 - December 13. Cost: $30 for six weeks. All sessions are held at Saint Anthony's Wellness Center. To register call 465-2264.

KidCare Health Insurance for Illinois Children is an opportunity for parents whose employers do not offer affordable health insurance to secure health care coverage for their children or for parents who may have recently lost their jobs. Additionally, KidCare can be helpful for parents who are currently paying high monthly premiums for their children's health insurance. To find out if your family is eligible, request an application, or have questions on the program, call the KidCare Program Coordinator at (618) 332-2740. Address: Southern Illinois Healthcare Foundation's Mother and Child Center, 6000 Bond Avenue, Centreville.

The Illinois Department of Human Services has a program for people who are aged, blind, or disabled called the AABD (Aid to Aged, Blind, or Disabled). The program provides a small grant to supplement the Social Security benefits check. Eligibility requirements: income under $550 per months and the person lives alone and the rent or mortgage is more than $100 per month. For more information contact Barbara Otto, SSI Coalition (312) 413-1467.

Partners in Policymaking is an innovative model of leadership training for self-advocates and parents of younger children with disabilities. The eight month scholarship training program instructs participants on current issues, technology, best practices, and familiarizes them with the legislative and policymaking process at all levels of government. It provides skill building, information, and the education necessary for participants to advocate for themselves and others to effectively influence public policy. Contact Ginny Cooke at (773) 262-1294 for further information. Applications must be postmarked by November 15, 1999.

Down Syndrome Articles
Our Special Person by Doris F. Irwin, E-mail: elvis@goodnet.com

I was there that precious day he came into our lives.
We cried, rejoiced and thanked the Lord
And could hardly believe our eyes.

That God had given us this precious gift,
So perfect, so sweet, so dear.
We knew not then of his special needs.
I saw, but did not hear.

I've loved him since before he made
His appearance on that day,
When I first learned about his "being",
All I could do was pray.

I prayed that he'd be perfect, perfect in every way.
What I did not know was, all of us
Are different in every way.

We're all here for a reason, the reason, we may not know
Until God shows us, in His Almighty time
On what path we are to go.

I've learned that we're each special,
Special in every way
And God loves, all the same, regardless,
Come what may!

He sent this little boy to show us how special we are to Him.
Now it is up to us to find the right road, no matter how dim
We feel it is, at times.

The hurt we will feel inside, the road will be hard and rough
But we shall abide
By his glorious decision in choosing us
To care for His Gift of Love.

I thank you, God
For Your trust in us
For this wonderful gift
From Above.

September 1, 1999

The Story of Joshua Andrew Blanchard & His TV News Debut by Sandi L. Blanchard

     My husband Glenn and I have tried for a child for 10 years. We went through every fertility treatment known to man: 4-Surgerys for Endometriosis, 1 Tubal Pregnancy, Removal of Tube, Temperature Methods, Ovulation Kits, Colmid Therapy, 4 Artificial Insemination Treatments, 4-in-Vitro Fertilization Treatments (IVF) and a baby in a pear tree!
     The first IVF treatment I became pregnant, only to find out it was a blighted ovum. Which means I had the placenta and the sac, but no baby. I thought I heard it all until that happened. Then we had the 2nd & 3rd treatment and nothing happened. Finally our 4th and final treatment that our insurance would pay for, I became pregnant, but still somewhat frightened. The reason being is when I got pregnant on the 1st IVF treatment my (HCG) level came back as 51 which they would like to see at least 100-150. And of course like I said it was the blighted ovum. Well on my 4th treatment my (HCG) level only came back 53 (HCG detects the "Human Chorionic Gonadotrophin") simply means the fetal tissues have achieved implantation. So because it came back so low again I was very upset. I felt like "HERE WE GO AGAIN!"
     Well I had to wait a few days for them to run the test again and it came back 436, well over what they wanted. I was so relieved. It was just like finding out I was pregnant all over again. Then our first ultrasound at 8 weeks we actually seen the babies heart beat. We were crying and laughing it was finally real a baby on the way ours. Then I had ultrasounds every 2 weeks I was considered "high risk" because of my age (36). All is going well, I'm very excited about my pregnancy. Then I start showing that was so wonderful! Then I start feeling movement the best feeling in the world that made it all feel so real. All my prenatal visits going fine. Putting on the weight. And then it was time for our 5th month ultrasound.
     This is when all the heartache started again. Our ultrasound showed fluid on Joshua's stomach this is what made the doctors concerned they said it is either viral or could be Down syndrome. I couldn't believe what I was hearing. They scheduled me for an amniocentesis to confirm their findings. Well, on Thursday 8-14-96 Dr. Ball calls me at 6:50 a.m. as I was getting ready for work to tell me that the amniocentesis results are back in and they did not come back normal. He said the 21st pair of chromosomes has an extra chromosome, which means the baby has Down syndrome. To top it off he asked me if I considered aborting it. Was I hearing everything right? Was I having a bad dream after all it is only 6:50 a.m.? Realizing I wasn't dreaming I told the doctor there was no way I would kill my baby. I said "God gave me this baby and if he wants him back he can take him". I'm not God.
     Well, I went to work I knew if I didn't I would have just been a basket case at home. I came home that night and just fell apart anyway the burden I had been carrying all day was just too much for me to handle alone. My husband said he just slept all day.
     I've never felt so much pain in all my life. My insides just felt as though they were going to come out. I could actually feel my insides moving around my heart was so heavy that I could no longer cry they became as groans. I just did not understand why things like this always seem to happen to me and my husband as well as many others out there. All we wanted was a happy healthy normal baby just like any other couple. We didn't think that was too much to ask. I cried for a whole week, I was a mess. Then I realized whom I was living for.
Joshua and Sandi Blanchard
Joshua Blanchard, 18 months old, with Sandi
     The one and only true living God his name is Jesus! It turned my whole thinking around instead of crying I started praying and believing God for a true miracle. And believe me I did for the last 4 months of my pregnancy I prayed it, believed it, and spoke it, I believed God to heal Joshua of Down syndrome. A friend at work said, "What are you going to do if Joshua does have Down syndrome. My reply was "IF" is not in my vocabulary and Joshua is not going to have Down syndrome. I truly believed God that much.
     Joshua was born with Down syndrome. Again I was devastated. I did not understand what God was doing. I truly believed him without a shadow of a doubt. Then the second day of Joshua's life we find out he has congestive heart failure, 4 holes in his heart. None of my ultrasounds showed anything wrong with his heart. I couldn't take anymore; my husband and me fell apart. We thought they were going to rush him to Children's that night for open-heart surgery. Here I thought, God, why did you give me my son only to take him away from us already and what about my miracle I prayed for? Later that day my nurse came in and asked if she could pray with me. She knew what we had just found out and I had also told her how long it took us to get Joshua. She prayed with me and then left. Of course I still cried and groaned all day and all night only to awake at 2 a.m. to find I couldn't open my eyes from crying so much, they were swollen shut. The night nurse gave me some sleeping pills to help me rest.
     Morning came only to realize I wasn't dreaming: it was all true. Still confused about everything my nurse comes in again around my lunch time the second day and said, "I went home last night and I had a burden on my heart for you and the Lord told me to write this to you as though it is Him speaking to you Himself". My Pastor thinks she was an angel sent by God because she did not touch me as a patient one time. I think either way she is an angel for listening to God.

THE LORDS MESSAGE

Dear Sandy,
Do not lose your confidence in me for I am faithful. Though the mountains crumble to the sea, I am there. I am in control. For you see I am the Lord of every circumstance, and nothing is too difficult for me. While you may not understand for a season and while you may groan, I am there. I have heard your cry. I have seen your faith. Your heart is towards me. Those who trust in me will not be disappointed. I have every answer you are not alone. My word is true and endures forever. Know that I love you and care for you tenderly. I am your God you are my beloved children. Stay true to me. Do not look to the right or the left. I will lift you up for I am the lifter of your head. In the midst of all reports keep your heart and hands extended to me. I move mountains nothing is too difficult for me. I am at work. Come unto me all you who are weary and heavy laden and I will give you rest. Keep my word in your heart and on your lips you have the victory. Praise and thank me through the storm. You will see the works of the Lord. The salvation of the Lord. Your baby is a Blessing you will see.

     I'm so thankful that God heard my cry and my prayers I hold dear to that letter to this day and for many years to come. God has a reason and a purpose for Joshua's life and a reason why he allowed him to have Down syndrome. As he said, "Your baby is a Blessing, you will see".
     Joshua is a true blessing to me each and every day he brings smiles to my face, puts a song in my heart and brings joy to my life as well as to everyone he meets. He knows no strangers. He is a very loving and sweet little boy and loves to cuddle and give kisses. He has stolen the hearts of every one in my church. He is the "Church Baby" and we have at least 15 new babies in our church. They are all loved very much also, but Joshua is Special.
     I'm honored that God has chosen me to be Joshua's Mother he has given me the most precious gift I could have ever asked for. And he is truly a blessing!
     Joshua made his big 2-day appearance on KMOX TV with Al Wiman in St. Louis MO. The dates he appeared were, Thursday 1-14-99 and Friday 1-15-99 on channel 4 at 5:00 p.m. Al Wiman does medical stories and medical updates.
     He did the story on Joshua's heart surgery and the Down syndrome. Along with the support group we belong to in Belleville with Prime Care. And the fact that it took us 10 years of hard trying to get Joshua and then find out 5 months into my pregnancy that he has Down syndrome.
     It came out really nice, it will truly be a keep sake. The station sent us a couple of copies of the segment. I didn't know until the end of the segment, but Al said he would follow up on Joshua from time to time to see his continued progress.
     I think that is great. This is a blessing to me because it allows people to see that our children aren't much different from there children. It's great publicity for our children and it educates the world about Down syndrome and I'm glad Joshua was able to be a part of that. Joshua does make a difference in this world.

Father's Journal
Mud Pies
Upon returning from a trip I saw Emmanuel as the world sees him: a Down syndrome child. A minute later, my sight restored and scales over my eyes, I saw my beautiful son.
Web Wanderings
The Center for Motor Behavior in Down Syndrome at the University of Michigan: http://www.umich.edu/~cmbds/ The site includes information about current and reviewed research in motor behavior in Down syndrome.

GateNet Automated Information Network: http://www.lcls.org/gatenet. Local libraries will assist users in obtaining items identified during online searches. Access times: Monday - Saturday, 7:00 a.m. - 11:00 p.m. Sunday: noon - 11:00 p.m.

Special Kids Learning Videotapes: http://www.special-kids.com or call 1 (800) KIDS-153, Fax: (414) 679-5992.