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Cover Photo: Courtesy of Gary Parker. Two …

Cover photo : Courtesy of gary parker . Two teenage friends with booklet is what we wish we were handed when we each learned about ourdaughters dwarfism. Although the news of a child with dwarfism is almost alwaysunexpected, we hope you too will come to see the difference as a wonderful gift,and a chance to learn about yourself and others. It has been a beautiful surprise thathas given us a whole new colorful view of life and reaffirmed the importance ofcelebrating the differences in each of would like to thank our families, the LPA Board of Directors, the LPA MedicalAdvisory Board, and the family and friends of Amber Rose Jinks for their input andfinancial support for this project.

their small yet proportionate stature. Other medical conditions or simply having short parents may also cause proportionate short-stature. Persons with “disproportionate

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Transcription of Cover Photo: Courtesy of Gary Parker. Two …

1 Cover photo : Courtesy of gary parker . Two teenage friends with booklet is what we wish we were handed when we each learned about ourdaughters dwarfism. Although the news of a child with dwarfism is almost alwaysunexpected, we hope you too will come to see the difference as a wonderful gift,and a chance to learn about yourself and others. It has been a beautiful surprise thathas given us a whole new colorful view of life and reaffirmed the importance ofcelebrating the differences in each of would like to thank our families, the LPA Board of Directors, the LPA MedicalAdvisory Board, and the family and friends of Amber Rose Jinks for their input andfinancial support for this project.

2 We would also like to thank everyone who helped usrefine this booklet, especially Ruth Ricker and Leroy Bankowski (LPA NationalPresidents), and John and Nancy Mayeux for their suggestions and encouragement. Joanna Campbell and Nina Dorren, 1998It s been 8 years since the first booklet was published and I m thrilled to be able toshare this updated version with you. My daughter is now 14 and we have gonethrough all of elementary school and middle school and let me tell you it s beeneasier than I thought it would be most days anyway. We ve certainly had our fairshare of negative comments, stares, and ignorant, rude people, but overall, we ve foundour world to be a pretty accepting and wonderful place.

3 Of course, so much of ourstrength and ability to function well in a society that values sameness comes fromimportant lessons we ve learned from being part of LPA all these years. Our friends inLPA, our role models, our LPA family, are invaluable. I would like to thank Angela VanEtten, Ericka Okenfuss, Stacie Pouliot, Barbara Spiegel and Lois Lamb for theirongoing support of this project. I d like to thank Louann McKay, Vicky Schulte andPatti Bell for their ongoing support of me personally as a friend and a mother. I wouldlike to thank Rob Haines, the Orange Blossom Chapter and District 12 for being thegreatest chapter and district an LPA member could ask would also like to thank my husband Jim for always being patient and supportive, myson Jack for finding the fun in any situation and for being such an incredible personwith a big heart, and my daughter, Elizabeth, who I admire and love more each courage is inspiring and I m proud you are my daughter.

4 Joanna Campbell, November 2006 MISSION LPA is dedicated to improving the quality of life for people with dwarfismthroughout their lives while celebrating with great pride Little People scontribution to social diversity. LPA strives to bring solutions and global awarenessto the prominent issues affecting individuals of short stature and their families. to of Dwarf of and Emotions of New Exactly are my Child s Differences? Aspects and Common Concerns1) How do we tell our family and friends?2) When will people notice my child is little?3) Concerns about your child s future4) Concerns about and Socially Healthy Ideas1) Be aware of the myth that tallness=success2) Preparing your child for being little 3) Avoid babying and overprotecting your child4) Relax and enjoy your Considerations1) What will the visit to the specialist be like?

5 2) If we have a diagnosis, why should we continue to see a geneticist?3) Watch head size (head circumference)4)Low Muscle Tone5)Resting body temperature6) Nasal Passages7)Respiratory Concerns8) Ear Concerns9) Neurological tests10) Weight11) Cures10. Practical Issues1)Practical Aids2) Clothes3) Toileting4)Books on Dwarfism5)Dwarfism groups on-line6)Financial help through government programs7) Adaptations in your home11. Conclusion12. What I ve Learned by Joanna Letter Samples14. Resources15. Follow-up to Welcome to Holland16. Medical Advisory 1-888-LPA-20011 WELCOME TO HOLLANDYou may have learned recently that your child was born with a form of so, the first thing to do, as hard as it may be, is to slow down and avoid jumpingtoconclusions.

6 Before long you may begin to realize that having a child with adifference can bring you a whole new view. It will take a little time andlots of new information to start bringing this new picture into news that your child has dwarfism will lead you down pathsyou never thought you d have to travel as a parent. But thejourney can be very much worth the time, effort, strengthand understanding you will develop. The very first step isto understand that the child you now hold in your armsmay not be the baby you thought you d have, but he orshe is your baby and needs you now more than general guide tries to address the most commonquestions and issues that new parents face.

7 Ithighlights some major areas that you will need togather more in-depth information on based onyour child's specific form of dwarfism. This bookletis your guidebook to help you begin integrating somenew views of life into a very personal perspective. Lots ofinformation is given for new parents to start raising achild safely, with confidence and optimism. There is awealth of support and help available should you desireit. It is wise to learn all you following brief essay may help you find a newperspective during those times when you may befeeling overwhelmed. It is reprinted with permissionof the TO HOLLANDbyEmily Perl Kingsley, 1987, all rights reservedI 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 understandit, to imagine how it would feel.

8 It's like When you're going to have a baby, it's like planning a fabulous vacation trip toItaly. You buy a bunch of guidebooks and make your wonderful plans. TheColiseum. The Michelangelo, David. The gondolas of Venice. You may learnsome handy phrases in Italian. It's all very months of eager anticipation, the day finally arrives. You pack your bagsand off you go. Several hours later, the plane lands. The stewardess comes in andsays, Welcome to Holland."Two friends both with Kneist Courtesy gary parker . HOLLAND?!? you say. What do you mean, Holland? I signed up for Italy! I'msupposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and thereyou must important thing is that they haven't taken you to a horrible, disgusting,filthy place, full of pestilence, famine and disease.

9 It's just a different you must go out and buy new guidebooks. And you must learn a whole newlanguage. And you will meet a whole new group of people you would neverhave 's just a different place .. After you've been there for a while and you catchyour breath, you look around .. and you begin to notice that Holland haswindmills .. and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're allbragging about what a wonderful time they had there. And for the rest of yourlife, you will say Yes, that's where I was supposed to go. That's what I hadplanned." And the pain of that will never, ever, ever go away.

10 Because the lossof that dream is a very, very significant loss. But if you spend your life mourningthe fact that you didn't get to Italy, you may never be free to enjoy the veryspecial, very lovely things .. about topics that follow discuss different aspects of dwarfism. Since everyone perceiveslife through their own lenses, there are different perspectives and opinions on theseissues. Hopefully, the information will help you ask your own questions, sort throughthe many answers you will receive, and integrate your own experiences and feelings intoyour own personal perspective. This personal perspective will color both your view ofthe world and your child s. DEFINITION OF DWARF In general, dwarf simply refers to something that is much smaller than , people who are 4'10" and under (and shorter than the norm for theirethnic background and family history), once they ve attained their adult height, areconsidered short-statured, or a dwarf person.


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