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WITHOUT U: Raising a Child With Down Syndrome (DS) This new book contains insights into the joys and struggles of raising a special needs child as well as a great resource for practical ways to meet everyday situations creatively. It is a MUST READ for parents, relatives, educators, professionals and anyone else who desires to understand the realities of raising a special needs child. Copies of this book may be purchased by printing and filling out the ORDER FORM below and mailing to the address listed. Thank you for your order!!! Or you may Email for more information: typing@gte.net Thank you for your request. |
Jonathan Lee Hollingsworth |
Without U Raising a Child With Down Syndrome Experience a DEPTH OF LOVE for a child that other parents might never begin to feel. "Able-bodied" children most likely will grow and mature in spite of their parents or environment. However, children with Down Syndrome (DS) will only grow, develop, reach and exceed their potential because of their parents (caregivers) and environment. By: Just A Mom, Darlene J. Hollingsworth "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 (NIV) ___________________________________________________________________________________ Published by Typing On Wheels P.O. Box 1196 Euless, TX 76039-1196 Additional copies available. typing@typingonwheels.com Copyright 2002 All Rights Reserved. No part of this book may be reproduced or transmitted in any form or by any means, graphic, electronic, or mechanical, including photocopying, recording, taping, or by any information storage or retrieval system, without the permission in writing from the publisher. __________________________________________________________________________________ TABLE OF CONTENTS SCROLL DOWN TO VIEW EXCEPT INTRODUCTION [EXCERPT ] WELCOME TO HOLLAND by Emily Perl Kingsley LABELS "WHY ME" SYNDROME [EXCERPT ] POSITIVELY POSITIVE CHOSEN INDIAN CALL WIGGLES DON'T TRY TO DO IT ALONE TONGUE PLAY TALK FOR MYSELF "THE STUPID KID" STOP PAMPERING YOUR CHILD BELLY LIFT TO SPANK OR NOT TO SPANK? AWESOME MOTHER GIFTED ACCOMPLISHMENT TOUCHED BY AN ANGEL CRUISE OR BRUISE 1ST GRADE PERFORMANCE [EXCERPT ] MOM'S 6TH SENSE . PANIC SYNDROME POSTER CHILD FINANCES HEART TO HEART BRAINY IDEA BOOK WORM KICK'N IN I CAN'T GET HIM OUT OF THE BUILDINGS THE MIRACLE OF MEDICINE ABLE-BODIED PEOPLE HELP US! DON'T NEGLECT THE SPIRITUAL . WITHOUT U! THOUGHTS COMPUTER MATERIAL BOOK RESOURCES INTERNET RESOURCES . ORGANIZATIONAL RESOURCES . PRINT RESOURCES INDEX _____________________________________________________________________________________ INTRODUCTION "Able-bodied" children most likely will grow and mature in spite of their parents or environment. However, children with Down Syndrome (DS) will only grow, develop, reach and exceed their potential BECAUSE of their parents (caregivers) and environment. These short essays are created in such a way as to make them easy to read in a short period of time. Our lives are busy but I think all of us can stop and read a short essay. Perhaps you could stop and read one a day, or if you're like a friend of mine, read them all at once. If you do that, try to refer back to topics of interest from time to time. The information in the boxes is a practical statement or thought. It is a suggestion to assist you in accomplishing the goals in your child's development. The contents of this book are not intended to solve all there is to solve in the lives of children with Down Syndrome but are written to encourage and stir you to action. The book may make you laugh, cry, challenge you, cause debate, and maybe even trigger anger. The words you read are meant to motivate you to provide an environment in which your child will even exceed the potential you are able to see at this moment. Keep before you at all times the word, Potential: A teenage boy wrote in a book he co-authored, these words "I can do anything someone takes the time to teach me" [Count Us In] . I keep this thought before me at all times, remembering that, I can obtain the results I want if I will just take the time needed to teach, re-teach, correct, encourage, assist and anything else needed to produce the desired response. Results will require spending time. It is as simple as the familiar quote "the more you put into something, the more you will get out of it." [Unknown Author] The rewards may be slow coming, but you will eventually reap an abundance of joy and blessing. I believe that the two main ingredients in raising a child with DS are time and energy. If you do not have time and/or energy, please find someone who does. There are plenty of services available to assist you. Without these two ingredients your child cannot "reach and exceed" his/her potential. Some of you reading this book may be new in this adventure of raising a child with DS and not quite ready for some of the stories in this book. You may just not be at that level to accept many things yet. But remember, you WILL get there and anything worth achieving is worth the hard work. Others reading this book may be long-time victors with their child. Perhaps you are a professional involved with a Child with DS or just a person who occasionally comes in contact with a special child. Whatever your situation, this book can be a helpful tool to you too. We can be told something over and over and over again but until we are really ready to hear, accept and do, the words really are in vain because it is just not the right time for you. I realized early on that I was walking a road that many others had already walked before me. I was ready to allow their help and encouragement to make me a better mom -- experience a depth of love for a child that other parents may not begin to feel. The names used in these essays may be fictitious; all the stories are true experiences of my son and myself or others I've met along the way. The examples are not necessarily the solution to your situations, but should provide encouragement and stimulate ideas for your specific situation. All the children mentioned have Down Syndrome unless otherwise noted. ____________________________________________________________________________________ "WHY ME" SYNDROME [Birth and Announcement] We are going to have a baby. Wow! I was 46 years of age and never thought I would have a child. I was so excited. There wasn't a plan to have a child at this point in our lives but it sure did happen. Since I was older, I was considered a high risk pregnancy and ended up being in bed seven months. During that time I was told of some possible complications for the pregnancy as well as the high risk of having a child with Down Syndrome. I did not have the amniocentesis; and abortion was not in my vocabulary. No matter what, I would love my child and be and do whatever it takes. I lived in expectation! While in bed there wasn't much to do except think, read and watch TV. I did some reading on Down Syndrome as well as watched the famous TV program "Life Goes On". Chris Burke (Corky) was a real, genuine boy with Down Syndrome and the star of the program. The program aired three seasons portraying his life and experiences with his family and friends. This program was a great inspiration to me. It came time to deliver. Labor was induced two weeks early because he was gaining a pound and a half a week and if we waited full term he would weigh 11 lbs. I was just too old for that. Anyway, he was born! He had extensive testing done immediately. Five visual, physical signs of having Down Syndrome were found, but even at that we didn't accept the Down Syndrome diagnosis until the lab tests were completed. That took two weeks of waiting. Finally, the results and, yes, he had Down Syndrome -- that extra chromosome. That certainly didn't hinder our love but rather increased it! Of course there was the "why me" syndrome. I questioned. I asked why. I also didn't think it was fair. You see, at that time, there was another women of my age, who drank, smoked, did drugs and all that and her child was born "healthy". I, however, hadn't done any of that my entire life. I finally decided that God gave me my son because my mom (who was in heaven) raised her hand when God asked "who knows a loving and caring person to send this baby with Down Syndrome to?" I spoke with another mom who was 21 years old. She had no idea no inclination that her child would have Down Syndrome. She was, in her own words, "devastated". In fact, she mentioned to me that the way the doctor informed her of her son's "sad state" was even more devastating. The professional in this case, didn't have a good "bed side manner" nor possibly any idea of what an extreme joy this child would be to this new mom. I also spoke with various women who had the amniocentesis testing. Sometimes this test was incorrect. One lady I talked with said she had the test and was told her child would have DS but was born "normal". Another said she had the test and was told her child would be "normal" and the child was born and had DS. What this tells me is that this test was either right or wrong no middle ground. And worse yet, women were aborting their babies based on this test. How many babies have been aborted needlessly?????? Please don't abort your baby based on the amniocentesis!! Actually abortion shouldn't be an option! There are plenty of people out there that would love to have your child if you should decide that he/she just isn't for you right now. As a side note, my doctor was pretty certain that my child would have Down Syndrome but didn't tell me until afterwards. In one of the sonograms (and I have a picture) my son was sucking his thumb. An able-bodied baby in the womb has curved fingers/hand as he sucks his thumb like a fist. Whereas my baby didn't have the curved fingers/hand but it was kind of flat. Perhaps that's what causes the palm line. [The palm line: Look at your hand. You will probably see three lines across your palm. Close your hand and curl your fingers. You'll see how the lines in your palm are formed. Now close your hand without curving the fingers. With Down Syndrome, often, the two top lines are as one continuous line going across below the fingers, thus one line is formed.] ___________________________________________________________________________________ 1ST GRADE PERFORMANCE [unpredictable] Jonathan was going to be in his very first, on-stage performance at school. This was going to be exciting for him (and me too). He was not going to have any solo lines because he didn't talk. He was simply going to stand on the stage with four other special children and pass a little bag from one child to the other while children from the other regular first grade classes sang "Baa Baa Black Sheep". I was so excited for him. I got to school early expecting Jonathan to perform his special little bit and thus begin his acting career. Perhaps he'll be a "Corky" Chris Burke, starring actor of a former TV series "Life Goes On" (which by the way, aired three seasons). When his teacher saw me, she quickly came over. She sadly informed me that because of Jonathan's poor behavior during rehearsal he was not going to perform. She said that during rehearsal he was running all over the stage and was not being very compliant. I was saddened but knew that she was right in not letting him perform. I just said, "Well, okay, but I'll be staying for the program and watch the other children begin "their acting careers." When it came time for Jonathan's group to go on stage I was amazed. His teacher had a change of heart. She took Jonathan by the hand and led him up to the stage steps with the other four children. Jonathan led the group and was first on the stage. The others proudly followed. I watched with apprehension what will Jonathan do? Will he embarrass me to death? What will happen? Will he run all over the stage? The five children passed the pretend bag of wool from the first child down to Jonathan and back again as the other regular first grade classes sang, "Baa Baa Black Sheep". What is Jonathan going to do? To my surprise and to the surprise of his teacher, Jonathan stood there with a great big smile and performed his simple task proudly. I was so proud, too. However, now the song was over. The four other children turned to their right and began to walk a cross the stage and down the stairs. But Jonathan, he didn't move. He just stood there. "Oh my! What is he going to do", I asked myself. I'm sure, too, that his teacher was beginning to get a little anxious as well. Jonathan just stood there. It seemed like an eternity. What was he going to do? Then, he moved. He took his right arm and put it across his waist while his left arm went behind his back. Then with a great sense of pride and a huge smile, he bent forward and took the slowest and most distinct bow anyone could ever imagine. After his bow he turned and walked proudly off the stage and sat appropriately with his class. My son, so unpredictable; but I am so proud of him. ___________________________________________________________________________________ |
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