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Welcome to Holland by Emily Perl Kingsley
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…
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Angel Karly Foundation – September article
www.angelkarly.org
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Angel Lina’s Testimony – LGIT
Lina’s Mom shares with us the success on LGIT and GFCF diet. Lina and her family are from Germany this article features both languages. Our angel Lina (deletion class 2) will soon turn 4. For her first 3 years of life, she was able to develop well without epilepsy. Right around her third birthday, epilepsy started with first febrile seizures. We started the LGIT diet in November of 2012 as well as treatment with Frisium due to many myoclonic seizures and developmental stagnation. In addition, in April we went gluten free and reduced casein intakes significantly. Ever since, Lina is doing well and of her myoclonic seizures not much is noticeable.…
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Going Back to School and Maintaining LGIT
Going Back to School and Maintaining LGIT By Sybille Kraft Bellamy Going back to school for LGIT students can be easy to prepare. Personally, I consider Max as being allergic to sugar! The same way he wears a red wristband in the Hospital Warning of Dextrose/glucose allergies, his teacher, aides and therapists are informed about his ketogenic diet. It is one of the main items on his IEP. We have a controlled protocol with the staff that lists the food allowed and the amount authorized. I prepare Max’s lunch daily and if he did not eat the way he should for his breakfast I write a note in his communication book…
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Making Sense of it all – By Ed Weeber, PhD.
Making Sense of it all By Edwin J. Weeber, Ph.D., Professor, Department of Molecular Pharmacology and Physiology, Chief Scientific Officer, USF Health Byrd Alzheimer’s Institute Director, Neurobiology of Learning and Memory Laboratory, University of South Florida Health’s Morsani College of MedicineMany of you reading this magazine are more immersed in medical science and scientific discovery then most of the population. With a focused eye on the latest work being performed in the field of Angelman syndrome, there are reports, papers, talks and posts that seem to be in constant conflict. It’s important for you all to know that this is actually a good thing! Rarely are there “eureka” (I’ve found it) moments in…
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Understanding Genetic Classes of Angelman Syndrome – By Dr. Charles Williams
Understanding Genetic Classes of Angelman Syndrome Dr. Charles Williams, Professor of Pediatrics and Genetics, Division of Genetics and Metabolism, Department of Pediatrics, University of Florida Conducting blood testing to diagnose Angelman syndrome (AS) can be a complicated matter. Here I summarize the different genetic causes of AS and provide general guidelines about how to use genetic tests to confirm the diagnosis of AS. First, let us look at the genetic mechanisms that cause AS: A chromosome 15 pair is illustrated for each class depicted but the other chromosomes are not shown. The P indicates the maternally-derived chromosome and the M indicates the maternally-derived one. The shaded chromosomes have a…
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Marital Stress, part 2
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…
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Does My Child Have a Good Teacher?
Does My Child Have a Good Teacher? When I went into the field of teaching in the public schools it was after I had my three children and finished my education. I was so excited to finally start my “dream” job and naively thought most teachers, especially those who taught students with more significant disabilities, felt the same excitement and commitment. I have since found that this is not always the case. Here are 9 questions you might want to ask yourself about your child’s teacher in order to ensure that your child is getting the best educational experience possible. – Lisa C. Gleeson MA SpEd. 1. Has the teacher…
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Angels in Action – Billy’s Story
Angels in Action Q&A with Angel Mama Linda Rafert Yoakam Q. Tell us about your favorite outings? Billy loves to be entertained. And he’s not picky. He enjoys movies, sporting events like minor league baseball or indoor football, local community plays or Broadway-caliber plays, musicals, concerts. Those are some of our favorite outings. Because he enjoys outings so much, we’ve resorted to season tickets to events. Swimming and water activities are not the draw they once were in his childhood. Billy understands more than he’s given credit for…here he is at the Boston Public Library making sure I don’t miss the beautiful paintings on the walls being described by our…
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IEP – Individual Education Plan
IEP – Individual Educational Plan If those three little letters cause your heart to race, here are some links to help you prepare for your meeting with the school. Special Thanks to our friends Kathy Anderson and Emilie Mullins for the resources. IEP Online Resources What is an IEP? http://www.ncld.org/at-school/your-childs-rights/iep-aamp-504-plan/what-is-an-iep http://www.specialeducationadvisor.com/special-education/what-is-an-iep/ http://www.oafccd.com/factshee/fact20.htm Top 10 Questions to Ask At an IEP Meeting http://www.specialeducationadvisor.com/top-ten-questions-to-ask-at-an-iep/ Key Terms for Special Education http://nichcy.org/schoolage/keyterms A Few Experts http://www.paulakluth.com/ Dr. Paula Kluth is a consultant, author, advocate, and independent scholar who works with teachers and families to provide inclusive opportunities for students with disabilities and to create more responsive and engaging schooling…
