Angelman Syndrome from A to Z
Everything you ever wanted to know about Angelman Syndrome... and then some!
TOPICS: A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
Compiled By Alice Evans and Julie Hyman
(Please note that this first edition was published in 1997 and may not reflect the most recent information available. A second edition is available for purchase through the ASF Office. Based on a recent (2008) member needs assessment one of the inititatives for the board was to update and create more information on activities of daily living. The following information will be updated soon!)
"Angelman Syndrome from A to Z" was produced, in print, with the generous assistance of Larry and Sandy Hackworth of Dunbar Printing in Dunbar, West Virginia and was funded by the Angelman Syndrome Foundation. Due to space limitations, the printed version of "Angelman Syndrome From A to Z" contains photographs and additional information not included here. If you are interested in obtaining the printed version, please contact the Angelman Syndrome Foundation.
Disclaimer
Please keep in mind that the information/tips provided in "Angelman Syndrome From A to Z" were, for the most part, contributed by family members and not necessarily professionals. This reference book is not meant to be a medical guide or detailed scientific journal, and is not intended to replace medical treatment and/or consultation. Please verify all medical information with your health care professional.
Additionally, the Angelman Syndrome Foundation does not endorse any agencies, products or services listed in this book.
Introduction...
The information in this "A to Z" reference book was compiled by Julie Hyman of New York City (who is big sister to Lesley, age 23) and Alice Evans of San Diego (who is the mother of Whitney, age 16, and a former ASF Board Member, 1993 - 1997). Julie is currently enrolled in the Masters of Social Work program at Yeshiva University's Wurzweiler School of Social Work. Alice has her M.S. degree in education and is a mentor teacher for the San Diego Unified School District. She served as the Education Committee Chair of ASF from 1993 - 1997.
Julie and Alice used letters written by the over 150 subscribers of the Angelman Syndrome Listserv, notes from families across the country and around the world, and various other sources to obtain the information included in this "cookbook of ideas". It is their goal to provide family members, care providers, teachers, etc. with up-to-date information on an array of topics. "Angelman Syndrome From A to Z" was originally published by the Angelman Syndrome Foundation and distributed at the 1997 International Conference in Seattle, Washington in July, 1997. Look for the next edition at the 1999 Conference in Philadelphia!
This first attempt at compiling information is a "tip of the iceberg" effort! Alice and Julie hope that this reference book will truly be a "living document", and that family members, care providers, teachers, etc., will continue to add to this invaluable collection. (Click here to contribute your ideas and comments).
In closing, Alice and Julie would like you to please keep in mind that the information/tips contained in this book were contributed by family members and not necessarily professionals. In addition, this reference book is not meant to be a medical guide or a detailed scientific journal. Instead, it is hoped that the book will offer support, inspiration and encouragement. Many ideas are simply anecdotes from parents reflecting on what has worked for them. Julie and Alice highly recommend that you verify all medical information with health care professionals.
Special Thanks...
Julie and Alice would like to extend their deepest appreciation to the members of the Angelman Syndrome Listserv who contributed their thoughts and ideas to this project.
Additionally they would like to thank all of you who sent in your ideas and thoughts:
Audrey Angelman, Lee-On-Solent, Hants, England
Bonnie Anderson, Charlotte, Michigan
Hope Blair, Vero Beach, Florida
Suzanne Boomer, Jackson, Michigan
Dianne Brister, Idaho Falls, Idaho
Kathy Eikost, Northwood, Ohio
Katie Hendren, Huntington Beach, California
Pam New, Denver City, Texas
P.J. Silveria, Vancouver, Washington
Sandy Silveria, Vancouver, Washington
Rosemary Teggin, Dublin, Ireland
Kathy Vogelsang, Butte, Montana
A very special thanks goes to Greg and Ashley Burns, administrators of the Angelman Syndrome Listserv, a tool that has become a lifeline for so many parents, and to Kathy Vogelsang, not only for her contribution of tips and ideas, but for all her hard work in making sure this project continued to move forward. Julie and Alice would also like to thank the Board of Directors of the Angelman Syndrome Foundation for making this project financially possible.
The Angelman Syndrome Foundation would like to express their sincere thanks to Larry and Sandy Hackworth for their assistance in the layout and production of this book. Larry and Sandy have a 3 year old granddaughter, Lilly, with Angelman Syndrome.
Julie extends a personal thanks to Alice for all of her moral support along the way, in all matters from A to Z and beyond.
Extra Materials from AS from A-Z
Are You the Proud Parent of an "Angel"?
If you answer yes to any of these questions, the answer is more than likely a resounding yes!
- Have you developed the quickest reflexes around...diving for the salt shaker that is about to fly off the table...or protecting yourself from a lightning quick elbow, hand or foot jab?
- Do you have bruises all over your body from the slaps, kicks, pokes etc...that came so suddenly that even your extraordinary quick reflexes couldn't help defend yourself?
- Do you find yourself grabbing the hands of other adult friends at the dinner table as they reach for a dish? And do you remember to apologize profusely as they look at you in horror?
- Have you visited the ER because you are unable to see (your eye won’t stop watering!) after your angel’s aim was "right on"? If you haven’t ...be prepared! It’s called an abrasion on the cornea and it heals on its own in 24 to 48 hours! Don’t bother to seek help!
- Do you push everything into one small corner of the table at a restaurant the minute you sit down and instruct the waiter to do the same?
- Do you find yourself apologizing your life away to strangers who have been hugged, squeezed, grabbed, had their hair pulled etc...by your favorite angel?
- Have you ever had to buy a replacement hot dog, popcorn, soda, etc....for another individual who had theirs snatched by the quick hands of your angel? For example, has a friend looked away for a moment and realized that his hot dog bun no longer contained a hot dog!!
- Is the dust buster one of your best friends? Couldn't live without it, right?
- Do unfamiliar people wave at you and you wonder who in the world they are!?! And do you later discover that your angel is busy greeting anyone and everyone from the back seat of the car?
- Do you consider yourself a champion stain remover?
- Do you think you hold the world record for hugging and kissing a child...especially a TEENAGE CHILD!
- Have you become a speed reader...while rapidly turning the pages of a magazine to satisfy a very impatient angel? And do the dogs in those worn magazines have evidence of being firmly "poked"?
- Do you find yourself thinking unkind thoughts about rude individuals? And...deciding to take the high road, do you smile politely or ignore the rudeness...when you’d REALLY like to say "**@@!!&%%!!**!!!"
- Do you find yourself fleeing for a closet, restroom, garage etc... when your angel has discovered that you’re taking an important phone call?
- Have you forgotten what a good night's sleep feels like?
- Are you greeted on a weekend morning (or when you’re really, really, really running late) by a very bad smell (and occasionally some giggles) coming from you know who's bedroom???
- When you hear the sound of diabolical giggling...does your heart stop while (simultaneously) your legs fly in the direction of the sound?
- Do you often hear the sound of water exploding from the faucet...followed by that diabolical giggling just mentioned?
- Do you find yourself using food as a motivator...BECAUSE IT WORKS!!!???
- Do you often discover that you have taken a bath with your angel even though you haven’t actually been in the tub?
- Do you feel like you have spent a considerable amount of your adult life sitting in the restroom...facing the toilet???
- Have you ever felt like you have taken on the role of "midwife" in the restroom?
And last but not least...
- Do you sometimes feel so sad, fatigued, lonely and overwhelmed that you can’t imagine hanging in there much longer? And when you think about it for awhile... is it impossible to imagine life without the unconditional hugs and love from your angel? There's just something about that grin...and the joy that our angels express when they see us...that will help us endure.
Contributed By Alice Evans
Everything we ever needed to know, we learned from an Angel"...
- There is no such thing as "Angel-Proofing" your house.
- An Angels voice is louder then 200 adults in a crowded restaurant.
- Balls make marks on ceilings.
- You should not throw a ball when a ceiling fan is on.
- When you hear the toilet flush and an angel laugh, it is already too late.
- A king sized water bed holds enough water to fill a 200 square foot house 4 inches deep.
- Legos will pass through an Angel’s digestive track.
- When dialed randomly over a period of time numbers on a phone dial will combine in such a way that a three hour phone call to Scandinavia will appear on your phone bill.
- VCRs do not eject peanut butter and jelly sandwiches.
- Quiet does NOT mean DO NOT WORRY!
- Baby powder is impossible to get out of shag carpeting.
- Toothpaste and Desitin have qualities very similar to those of finger-paint.
- Objects on someone else’s plate are closer then they appear.
- Never leave the sprinkler or hose in such a way that your angel can turn the water on, unless you need a shower!
- Small mittens also fit nicely in the VCR.
- Laughter is often the best medicine.
- And the most important thing our Angels have taught us is...
- That just because a person can not speak does not mean they have nothing to say!
Contributed By: Janice Daley, Charles de Broin, Julie Hyman and Jeanne Imperati