By Charles De Broin, from Montreal Quebec Do we dads have it easy, you say. That romantic night turns into a nine month wait for a little miracle of life. Mom suddenly takes over and knows what to do, almost by instinct, or is it the eighteen girlfriends and her mom that make it all dizzily work. No sleep, no more calm evenings to watch the game on t.v. but all this is so much fun. They grow so fast and suddenly you realize something is wrong. Mother panics, dad comforts her to no avail. Doctors spin to find what it is that makes an otherwise healthy baby not progress as…

Welcome To Holland by Emily Perl Kingsley ©1987 by Emily Perl Kingsley. All rights reserved.  Reprinted with permission of the author. I 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 understand it, to imagine how it would feel.  It’s like this……   When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting. After months of eager anticipation, the day…

Marital Stress (part 2 from July edition) By Marc Bissonnette   “It is both the words you choose, as well as your tone that makes the difference.” “Look, I work all day, I bring in all the money, I pay for everything in the home, as well as your vacations – I don’t think it’s unfair that I ask you to pull your own weight” Guys, (or gals, if the roles are reversed) if you’re thinking that my response was perfectly reasonable – Bang your head against the wall, because it’s about the worst thing you can say. How do I know this? Because I had a very, very well…

Marital Stress in an Angelman Syndrome Family By Marc Bissonnette 86%, 90%, double the national average, “significantly higher” – All those are applied often to the divorce rate amongst families of the multiply disabled. There is some debate amongst researchers about the true rate of divorce, but they often focus on a specific disability or on a generic syndrome, such as Autism (I say “generic”, because some aspects of Angelman Syndrome falls within the Autism spectrum) – Whichever you believe, there is no denying that stress levels and anxiety in a family caring for one (or more!) children with Angelman Syndrome (AS) are high. We know, anecdotally, that the divorce…

“The words of advice I offer newly diagnosed families today starts out a little different than it did a few years ago. In the past I might have suggested parents not jump into researching the syndrome and to ignore the majority of what has been written by “experts”. Today there is a multitude of valuable information available and it is written by the true experts, the parents of the Angelman Syndrome Community. Do your research. Read all you can. Join the online support groups and ask questions. Find local families and meet their families. You are going to see a wide variety of personalities, abilities, opinions and you are going…

  The Journey Begins Here Together, we are all on a journey A journey that is the same and different There is no right or wrong way We span across the globe There is so much we can learn from one another We can share our experiences; of laughter, joy, failure and triumph Together, our global community will become connected like never before And we will make great progress Improve the lives of our families And maybe… just maybe… Take part in the ultimate solution in finding the cure! ~Lizzie Sordia Editor in Chief