Angelman Today July - August 2013

PREMIER DIGITAL EDITION INCLUDING RESOURCES ● RESEARCH ● INSPIRATION

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Letter From The Editor The Motivation It all began with a thought; a series of events like International Angelman Day and meeting other passionate parents. After receiving my son’s diagnosis, I immediately developed this strong desire to learn as much as I could about his genetic condition. Since there is currently no ‘treatment’ available, I asked myself; “what can I do to help my son today”?

As I learned of the advancements in research and the wonderful work that the foundations do across the globe, I was filled with gratitude and hope. But, my time is limited, as yours is, I wondered how I could stay current with this information?

Inspired by IAD, I sat down to write a blog post on www.MeetTheFamaliesofAS.blogspot.com and the words never came.

Instead, ideas of a simple resource that can give us information in the quickest way possible, directly in the palm of our hands. An online magazine! As I talked with Angel Moms, they thought it was perfect and had the same idea! It felt as though our conversations on how we are helping our kids was leading up to this.

My name is Lizzie Sordia and my son Nathan was diagnosed with Angelman Syndrome shortly after his second birthday.

Our story starts out very similar to many of yours. It was July to be exact. It’s funny how I find myself in this position just 3 years after his diagnosis. But I guess this is what happens when you light the fire of a Mother Lion! Don’t tell me what my son can’t do, he will show you what he can do! In our journey with Nathan, the hardest times were before we received his diagnosis. I knew immediately after birth something wasn’t right. He was transported to the NICU (Neonatal Intensive Care Unit) within 24 hours of being born. After seizures started we practically lived in the hospital. He was so sick and had uncontrollable seizures that almost took him from us. Doctors and specialist didn’t know what was wrong. Fragile X tests and others were inconclusive. We faced our darkest time alone with the unknown. I did not yet know of this wonderful and helpful community that was waiting for me.

Having a sick child and unanswered questions was the most helpless feeling for me and my family and I don’t want anyone to feel the way we did, no matter where they are on this planet. It is my personal goal to reach them and provide them with comfort or information, which ever they are looking for.

Nathan almost received a diagnosis of Autism, that’s what they were whispering around the hospital, but no one wanted to officially diagnose him. He had many of the same symptoms. Thanks to those whispers, it lead me to find the brightest people who knew how to help Nathan and make a difference in his life in a very short time. I can now say Nathan is healthy, he walks, has a few words, says “Mama” everyday (melts my heart), a few signs, sleeps through the night and is making gains every day.

Like most children with AS, Nathan (del+) did not start off sleeping very well, so since I was up, I put that time to good use.

I researched and reached out to AS families and learned from their experiences. I am going to share my team of experts with you as well as many others I have met along the way. The best news is that there are things we can do for our kids TODAY! Many of you are doing them already.

Now, more than any other time in history has it been easier to unite people on a global level. We are working on translating this magazine in every language so we can all communicate freely and quickly. I want to bring you the brightest minds in the field of AS including researchers and practitioners who treat our children everyday. Doctors that practice functional medicine and Bio-Medical treatments. All of these efforts will equal real suggestions that we can apply and see what will work for our individual children TODAY! Having options is important because there is a lot more going on with many of our kids then just chromosome 15 and some doctors are missing it the way they missed the diagnosis or they blame AS for some symptoms…

We will share with you experiences from families everywhere. There is nothing more powerful than an experience.

Anyone who would like to share their story CAN and you (the reader) can take what you would like from it and use it to help you on your journey (or not).

This is our life, our journey to learn and grow. It’s going to be wonderful, terrible, filled with love, hugs and tears. We are in it together to help.

Sincerely, Lizzie Sordia Editor-in-Chief

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July 2013 Premier Online Edition In Every Issue

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Contributors AS Research

9 Latest research by Ed Weeber 10 LGIT study by Dr. Thibert and Dr. Elizabeth Thiele Low Glycemic Index Treatment proves Effective at reducing seizures.

41 Minocycline update by FAST Newly Diagnosed Families

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Angels in Action

15 Angels in Action Inspiring stories from families celebrating the abilities of our children with Angelman Syndrome endearing called “Angels”.

Understanding Genetic Classes ‘Welcome to Holland’ by Emily Perl Kingsley.

Words of Wisdom Quotes from parents

15 Angels in Action - Krista 23 Angels in Action – Shea 29 Angels in Action - Carter Features

6 Understanding Genetic Classes of Angelman Syndrome Charles Williams, M.D. is a Professor of Pediatrics and Genetics, Division of Genetics and Metabolism, Department of Pediatrics, University of Florida.

2 Letter from the Editor Inspiration for creating Angelman Today.

4 Our Journey 18 Social Security Benefits 32 RDI Therapy - Relationship Development Intervention

27 Gluten Free Living

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Angelman Syndrome Foundations

12 Angelman Syndrome Foundation, US 13 Angelman Networks, New Zealand 21 Angelman Syndrome Ireland 25 Casa Angelman, Argentina 41 Foundation for Angelman Syndrome Therapeutics Cover Credits: Kaylee Fingold, AS, UBE3A Photographed by Wes Bonnefin Photography www.bonnefinstudios.com

Not just a fad diet, find out its many benefits for those with Angelman Syndrome. Find out some of the symptoms that go unnoticed.

18 This article will give you a basic overview of the options that may be available for your family and will provide you with the information needed to begin the Social Security application process.

Social Security Benefits

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JULY / AUGUST 2013 | Angelman Today

Our Journey Begins Here Together, we are all on a journey A journey that is the same and different There is no right way or wrong 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

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Angelman

Today

Contributors Edwin Weeber, Ph.D. Professor, Dept. 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 Medicine

Charles A. Williams, M.D. Professor of Pediatrics and Genetics, Division of Genetics and Metabolism, Department of Pediatrics, University of Florida

Karen VanPuyenbroek Associate Editor

Isabel Orellana

Marc Bissonnette

Sybille Kraft Bellamy

A Big Thank You to our contributors for helping to make this magazine a reality!

Your talent, passion and love for our kids is what Angelman Today is all about!

-Lizzie Sordia Editor – in - Chief

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Understanding Genetic Classes of Angelman Syndrome Dr. Charles Williams 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 paternal pattern of gene functioning while the unshaded chromosomes have a maternal pattern. AS can be caused by either a large chromosome deletion (70% of the time); a disruptive mutations in the UBE3A gene inherited from the mother (indicated by the X); inheritance from the father of 2 normal number 15 chromosomes (e.g., paternal uniparental disomy [UPD]); or an imprinting defect (ID), occurring when the chromosome 15 inherited from the mother has the paternal pattern of gene functioning because of a problem in the imprinting center (denoted by the small open circle).

In addition to these mechanisms, a clinical diagnosis of AS may be given even though the genetic testing is normal. The percentages indicate how common each mechanism occurs.

How do we use genetic testing and what is the sequence of testing? There are many pathways to diagnosis for families undergoing testing for AS but the most common testing pathway is summarized here:

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JULY / AUGUST 2013 | Angelman Today

Welcome To Holland Welcome To Holland by Emily Perl Kingsley Š1987 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 finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed 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 there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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JULY / AUGUST 2013 | Angelman Today

“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 to feel right at home.

Here are a few tried and true words of advice that I still share because they have stood the test of time.

1. Never underestimate your child and do not base your expectations on the evaluations of others.

2. Your child is your child and unless you are neglecting or endangering your child that does not change because of a diagnosis. There are many people out there who think they know best but a parent's instinct and the intimate knowledge they have of their child serves as the best indicator of what is right and of what needs to be done.

3. No matter what the numbers say your child is still one of a kind and always will be. A diagnosis is a way of helping you help your child but it does not define your child or your family. Your child has a syndrome. The syndrome does not have your child.

4. Be a family first. Try not to let a diagnosis consume you. 24/7 therapy is not healthy for anyone. Love and play are the best gifts you can give your child and are the best stimulants for growth and development.

5. Take care of yourself. Take care of your spouse and take care of your other children. It is easy to focus on your child with a diagnosis and not realize you have let other things go. We have all tried to be the strong one and prove we can do this but I assure you the earlier you learn to allow others to help out the easier it will be.

6. There will be good days and bad days. Your emotions will betray you when you least expect it. You will experience the highest and lowest of emotions and sometimes on the same day. You will sweat the small stuff and you will celebrate the small stuff. You have joined a community that will be here for all of this and we will understand”.

Brenda Dixon, Mississippi Jonathan - 33yrs AS Del+

Words Of Wisdom

“Never accept a doctor telling you that your child ‘won't be able to’...

Never under estimate you child's potential--our kids love to learn. Always have faith in your 'gut' instincts...Momma (or Daddy) usually knows best.

Look forward with faith in the advances and treatments that are on the horizon, but, as you struggle (from time to time) in your daily life with an Angel (and there will be struggles), know that you are not alone--we are all in this together. Don't be afraid to ask questions. Support, tears, cheers and hugs are just a phone call or Facebook post away. Take time each day to recognize the blessings in your life. Enjoy your Angel hugs!!”

Carol Pulver, Florida Shea Pulver - 22yrs AS Del+

“Don't allow anyone, even yourself, to see a diagnosis instead of a child. A child needs a parent more than a therapist or researcher.

Yes, we need to wear several hats to be good parents - but from your child's point of view, he really needs Mommy and Daddy more than Dr/Therapist/researcher/advocate - he only has ONE parent or set of parents. Sometimes we get so caught up in "helping" them that we forget the main point, which is to be there physically and emotionally for them. From the start, concentrate on communication and functional skills. These things cannot wait until they're older. Typical children start learning those things immediately, and nobody says "oh, wait, I don't know how to communicate with you yet - I need to take a class" or "oh wait, you'll have to learn to potty train or pull your pants up and down when you're 15 (and 6 feet tall)"... it's more natural to just hand-over-hand those motions from a very early age, and present communication pictures (or even the objects themselves to choose from) as a matter of course as you go about your day. (This is Dora, this is a book - which one would you like?)

If it takes years to develop the actual skills, it's better to start at age 2 and have that skill when they're 12, then to start at age 12 to teach skills...when they've already got ingrained habits and learned helplessness from having everything done for them. Believe my aching back when I say teaching a child to crawl into his carseat early on will save a lot of wear and tear on your body. Kids with special needs get just as much joy and confidence from 'doing for themselves' as anyone. You never know until you try. Read "Disability is Natural" by Kathie Snow. This is common sense advice for parents of special needs kids that they really need to hear.”

Lulu Carpenter, California Simon - 23 yrs AS

WWW.ANGELMANTODAY.COM

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JULY / AUGUST 2013 | Angelman Today

Interested in what research has been published about AS? Dr. Ed Weeber will tell us how we can search for information and some of the latest research happening around the globe.

How can you get published scientific articles concerning Angelman syndrome research? By accessing the free data base called PubMed (www.pubmed.gov). This valuable resource is developed and maintained by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) and contains more than 20 million references to scientific articles. The search function allows single or multiple terms to narrow the number of “hits”. In addition, you can search for authors in order to find all of the publications from a specific researcher. Many of these publications are free and all of them have an abstract to describe the research.

A search for the term “Angelman syndrome” will reveal 1300 publications with the earliest dating back to 1950. To make the science a little easier to digest, every issue will present a selection of the latest published scientific articles with Angelman syndrome in the title, abstract or key words section of the paper. Below are some recent papers that have come out in the last few months.

Title: Recurrent fractures as a new skeletal problem in the course of Angelman syndrome.

Journal: Bone Authors: Rusińska A, Dzwonek AB, Chlebna-Sokół D. Department of Pediatric Propedeutics and Metabolic Bone Diseases, Medical University of Lodz, Poland; Maria Konopnicka Memorial Teaching Hospital No. 4, Medical University of Lodz, Poland.

Abstract: Angelman syndrome is a genetically inherited syndrome with severe retardation of psychomotor development and speech disturbances, usually accompanied by epilepsy, typical dysmorphic features, and some skeletal symptoms. The aim of the current report is to present new skeletal symptoms which may occur in the course of AS, based on a case report of an 8year-old girl with confirmed 15q11;12 microdeletion and recurrent low-trauma bone fractures. According to our knowledge it is the first report of such skeletal symptoms in patient with a diagnosis of AS. Title: Role of the ubiquitin ligase E6AP/UBE3A in controlling levels of the synaptic protein Arc. Journal: Proc Natl Acad Sci U S A Authors: Kühnle S, Mothes B, Matentzoglu K, Scheffner M. Department of Biology and Konstanz Research School Chemical Biology, University of Konstanz, 78457 Konstanz, Germany.

Abstract: Inactivation of the ubiquitin ligase E6 associated protein (E6AP) encoded by the UBE3A gene has been associated with development of the Angelman syndrome. Recently, it was reported that in mice, loss of E6AP expression results in increased levels of the synaptic protein Arc and a concomitant impaired synaptic function, providing an explanation for some phenotypic features of Angelman syndrome patients. Accordingly, E6AP has been shown to negatively regulate activity-regulated cytoskeleton-associated protein (Arc) and it has been suggested that E6AP targets Arc for ubiquitination and degradation. In our study, we provide evidence that Arc is not a direct substrate for E6AP and binds only weakly to E6AP, if at all. Furthermore, we show that down-regulation of E6AP expression stimulates estradiol-induced transcription of the Arc gene. Thus, we propose that Arc protein levels are controlled by E6AP at the transcriptional rather than at the posttranslational level.

Title: Proteomic profiling in Drosophila reveals potential Dube3a regulation of the actin cytoskeleton and neuronal homeostasis.

Journal: PLoS One Authors: Jensen L, Farook MF, Reiter LT. Department of Neurology, University of Tennessee Health Science Center, Memphis, Tennessee, United States of America.

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Abstract: The molecular defects associated with Angelman syndrome (AS) and 15q duplication autism are directly correlated to expression levels of the E3 ubiquitin ligase protein UBE3A. Here we used Drosophila melanogaster to screen for the targets of this ubiquitin ligase under conditions of both decreased (as in AS) or increased (as in dup(15)) levels of the fly Dube3a or human UBE3A proteins. Using liquid phase isoelectric focusing of proteins from whole fly head extracts we identified a total of 50 proteins that show changes in protein, and in some cases transcriptional levels, when Dube3a fluctuates. We analyzed head extracts from cytoplasmic, nuclear and membrane fractions for Dube3a regulated proteins. Our results indicate that Dube3a is involved in the regulation of cellular functions related to ATP synthesis/metabolism, actin cytoskeletal integrity, both catabolism and carbohydrate metabolism as well as nervous system development and function. Sixty-two percent of the proteins were >50% identical to homologous human proteins and 8 have previously be shown to be ubiquitinated in the fly nervous system. Eight proteins may be regulated by Dube3a at the transcript level through the transcriptional co-activation function of Dube3a. We investigated one autism-associated protein, ATPÎą, and found that it can be ubiquitinated in a Dube3a dependent manner. We also found that Dube3a mutants have significantly less filamentous actin than wild type larvae consistent with the identification of actin targets regulated by Dube3a. The identification of UBE3A targets is the first step in unraveling the molecular etiology of AS and duplication 15q autism.

Title: Discrimination training reduces high rate social approach behaviors in Angelman syndrome: proof of principle.

Journal: Res Dev Disabil.

Authors: Heald M, Allen D, Villa D, Oliver C. Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Edgbaston B15 2TT, UK. mxo988@bham.ac.uk Abstract: This proof of principle study was designed to evaluate whether excessively high rates of social approach behaviors in children with Angelman syndrome (AS) can be modified using a multiple schedule design. Four children with AS were exposed to a multiple schedule arrangement, in which social reinforcement and extinction, cued using a novel stimulus, were alternated.

Twenty-five to 35 discrimination training sessions were conducted and levels of approach behaviors were measured before and after the discrimination training for two children. All four participants evidenced discrimination between conditions of reinforcement and extinction after 16-20 teaching sessions as indicated by lower rates of social approach behaviors in the presence of the S(Δ) for extinction. Reversal effects for the two children for whom this design was implemented were evident.

The results demonstrate that after repeated training, the use of a novel stimulus can serve as a cue for children with AS to discriminate adult availability. This is a potentially effective component of a broader intervention strategy but highlights the need for sustained teaching procedures within this population.

Title: The Angelman syndrome protein Ube3a/E6AP is required for Golgi acidification and surface protein sialylation.

Journal: J Neurosci.

Authors: Condon KH, Ho J, Robinson CG, Hanus C, Ehlers MD. Department of Neurobiology, Duke University Medical Center, Durham, North Carolina 27710, USA. Abstract: Angelman syndrome (AS) is a severe disorder of postnatal brain development caused by neuron-specific loss of the HECT (homologous to E6AP carboxy terminus) domain E3 ubiquitin ligase Ube3a/E6AP. The cellular role of Ube3a remains enigmatic despite recent descriptions of synaptic and behavioral deficits in AS mouse models. Although neuron-specific imprinting is thought to limit the disease to the brain, Ube3a is expressed ubiquitously, suggesting a broader role in cellular function. In the current study, we demonstrate a profound structural disruption and cisternal swelling of the Golgi apparatus (GA) in the cortex of AS (UBE3A(m-/p+)) mice. In Ube3a knockdown cell lines and UBE3A(m-/p+) cortical neurons, the GA is severely under-acidified, leading to osmotic swelling. Both in vitro and in vivo, the loss of Ube3a and corresponding elevated pH of the GA is associated with a marked reduction in protein sialylation, a process highly dependent on intralumenal Golgi pH. Altered ion homeostasis of the GA may provide a common cellular pathophysiology underlying the diverse plasticity and neurodevelopmental deficits associated with AS.

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Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 – 90% Dr. Thibert and Dr. Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in reducing seizures in individuals with Angelman Syndrome. In July 2012 the results were in and published in Epilepsia and in the Angelman Syndrome Foundation newsletter.

Epilepsia link: http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2012.03537.x/abstract PubMed link: http://www.ncbi.nlm.nih.gov/pubmed/22779920 You can read my interview with Dr. Thibert on my blog www.MeetTheFamiliesofAS.blogspot.com

A Grandmother finds a solution for her granddaughter and all of our kids with Angelman Syndrome

By Lois Carroll When my growing granddaughter, who has AS, couldn't be fitted with large enough bibs, I took out my sewing machine to solve the problem. I showed the resulting smock to friends, and my project, Sophie's Smocks, named after my granddaughter, was born so that many kids with AS could have a free smock.

I buy new and gently used turtlenecks and trim. Supporters donate their time to help and their money for postage and materials to keep the project ongoing. All the smocks are FREE for individuals with AS. I have child size SMALL to adult XL. They are available to others for a donation to cover at least the postage to keep the project going.

To get a smock, all you have to do is ask by emailing smocks@cox.net. Give me your child's shirt size plus a name and mailing address including zip. I'll send one as soon as I can. There's no catch and no obligation. I mail around the world and free means free. You can check it out at my website: http://loiscarrollbooks.com/indexSS.htm

Thank you, Grandma Lois Sophie's Smocks

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JULY / AUGUST 2013 | Angelman Today

NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION Angelman Syndrome Foundation Invests $1.25 Million in AS Research Due to your support, the Angelman Syndrome Foundation is able to award more than $1.25 million in grants for AS research this current grant cycle. This year’s funded research will contribute to all future AS preclinical and clinical trials, helping move AS research closer to developing treatments for individuals with AS while furthering the research community’s understanding of the complexities of AS. Thanks to you, this year’s funded research will seek to define the optimal window for potential treatment, further understanding of varying UBE3A gene mutations and deletions, and determine if a current FDA-approved drug is a viable treatment in an AS mouse model. participation include working with a speech pathologist and conducting quarterly assessments, among others.

ASF Biennial Conference, Your Ultimate AS Resource The Angelman Syndrome Foundation’s 2013 Biennial Conference, Championing Progress, will be held July 23-26 at the Walt Disney World Swan & Dolphin resort in Orlando, Florida. As a central resource for your family’s unique needs and those of your loved one with AS, the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers, attend breakout sessions, and participate in collaborative opportunities with other families.

iPads For AS To help individuals with AS overcome some of the challenges associated with communication, the Angelman Syndrome Foundation has launched the iPads For AS program, which provides Apple® iPads® for up to 100 individuals who qualify for the program. Requirements for

www.Angelman.org

(800) 432-6435

ASF Honors Your Investment Due to your support and that of more than 7,000 volunteers during the last 21 years, the Angelman Syndrome Foundation has been able to: • Provide more than 250,000 individuals with information, support and connections to resources • Raise more than $12.5 million to fund research and provide direct support to individuals affected by AS • Grant more than $5.8 million to more than 70 research endeavors to support a diverse set of research projects • Hold more than 186 individual walks in 42 cities across the country that have been attended by more than 52,000 individuals

Thank you for your support!

The 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11,700 individuals who, to date, have raised more than $1 million towards the $1.1 million fundraising goal. Fundraising continues through September 30. The Angelman Syndrome Foundation is deeply grateful for the time, energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs, resources and networking opportunities, and that fund research that will help lead to a cure for AS.

The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization.

Int’l (630) 978-4245

info@angelman.org

The Power of Cooking Angelman syndrome, ketogenic diets and LGIT

By Sybille Kraft Bellamy One of the best ways to naturally help our angels is by giving them a nutritious healthy diet.

Our angels are fragile and very sensitive to their environment.

Little things, minor changes can trigger dramatic consequences.

Each child is unique, each parent is special.

We have to rediscover the power of food.

Therapeutic diets like ketogenic diets have been used for years to help control epilepsy. Today, the LGIT (Low Glycemic Index Treatment) is one of the easiest diets to give to our angels. It is one of the weapons we can use to protect them from the multiple risks they face. Seizures are a major and common risk for our angels.

The LGIT helps balance and reinforce the energy they need to keep them happy, healthy and at full cognitive capability.

The modification of your child’s diet can be done one step at a time.

Small changes can lead to big improvements.

This is a unique opportunity for you, MOM and DAD to directly affect your child’s health and quality of life.

There is nothing more terrible than to feel helpless when your child is sick. Our Angel’s challenges are numerous and it is proven that a special diet can help avoid many of their complications.

The medical community is embracing this form of treatment to remedy many disorders worldwide. The Angelman community is hard at work to bring awareness of this treatment to our families. Resources such as “Angleman Syndrome Diet” on Facebook and The Charlie Foundation can provide information and support to help you start taking control of your child’s diet, health and wellbeing.

Recipes can be found on Facebook.com/angelmansyndromediet

LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome.

Seizures have always been a huge problem for them, at one point they were both having over 250 grandmals a day and spent almost a year in the hospital trying to get them controlled. Doctors at that time only gave them a 1% chance to survive. Now at age 26 Joel’s seizures are well controlled with meds but Jay’s have never been controlled.

In March we started the LGIT after talking to his Dr. and getting a lot of support and advice from Sybille. Since starting the diet we have seen a huge decrease in the amount and severity of Jay’s seizures. Before the diet he would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a month. Prior to starting the LGIT Jay’s seizures were very intense grandmals where he would stop breathing and turn blue each time and he would have several in a row, we have not seen him turn blue or stop breathing since the diet. I believe the diet is helping him tremendously and he is much more alert and vocal. Their neurologist has begun weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT 13 diet also and he too is acting more alert and vocal (and no seizures!). - Lisa Truax-Murphy

LGIT Testimonial - Anna had a terrible start. She could not drink and because of this she was hospitalized 3 weeks after her birth. They soon discovered she had epilepsy and here in The Netherlands I understood, almost all babies with epilepsy get Phenobarbital. Because I was not satisfied with the care Anna received we decided to move to another hospital. So almost 6 months later, the new neurologist advised us to stop with Phenobarbital and start with Keppra.

And it was a good choice. When Anna was 1 year old she finally got diagnosed: Angelman Syndrome. With Keppra, we succeeded to keep her seizure free for almost 2 years. When the seizures came back we started with Rivotril (Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again. Her neurologist advised us to start with a third drug but we didn’t want to give her more medicine. At the same time I read the research article about the LGIT and I got enthusiastic about it. I had to give it a try! Anna’s neurologist was a bit suspicious but I insisted so he helped us. The first month was terrible. Anna got more seizures and was very tired. I was so afraid I was only complicating her life instead of helping her. I was so down that I just wanted to stop the diet. But after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks. And I’m so happy we did this. A week later, Anna’s absences were gone. She started to walk again, became more alert.... And the best thing of all was that for the first time in her life she slept for 6 hours without waking. This was so amazing!

The LGIT made a big change in Anna’s life. She is able to concentrate, she’s more active, and sleeps better. It's just amazing! At first, the diet appears very complicated. This is because we are so used to eating a lot of bread, sugar and processed food. If you just use fresh vegetables, meat, eggs and fish you can easily cook something very healthy, tasty and LGIT. When travelling we always take our own food with us for Anna and there is always something on the menu in a restaurant that she can eat.

-Violeta Giurgi

Summer Time is a great time to find your local farmer’s market and buy fresh fruits & veggies

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Angels in Action Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with Angelman Syndrome. Written by the families, we join in celebrating the abilities no matter how big or small. We believe it is important to inspire everyone with these real stories of our endearingly termed ‘Angels in Action’.

Possibilities abound when we have a vision!

By Karen VanPuyenbroeck of Illinois Angel Mom to Krista 10 years old, AS UPD When I was asked by our Editor In Chief, Lizzie Sordia, to write a piece about Krista's abilities for this section; I asked myself, what were my burning questions about how to develop abilities in my daughter; and for me, I just really wanted to figure out how I could teach her to speak. I knew that there had to be a way and I obsessed on this topic for hours, days, months and yes, even years. It took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my angel to speak too! I wanted to know how it was possible? And the big lesson that I learned from Richie's mom, Dawn was that they first believed that he could develop this ability and so did his therapists! From that point on I developed my own belief and eliminated therapists who did not support my vision for my daughter of verbal communication and unfortunately for me; this meant that Krista received no speech therapy for a time and mom became her therapist with the help of a program called NACD. Through NACD, I learned that an unskilled parent, who was willing to learn how to implement therapy, who would spend many hours per week implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who could only spend an hour per week with my child and who did not share my vision.

Today, at age 10 Krista speaks over a hundred words and has quite a few phrases, her speech has been referred to as "functional" by her school and by the last two speech therapists who have evaluated her. Krista's favorite and most consistent phrase over the years has been "I love you" and if those were the only words that I had ever heard spoken from the lips of my angel, all of the energy that we have put into her healing program would have been worth it and I would do hundreds of times over again.

Here's how we did it: 1. We cultivated belief! I have to credit my husband Steve for this. This angel Daddy always knew that his girl was A-ok. And to my kid's Nana who said simply "if you want her to speak, we will teach her to speak". Because Nana has adult twin boys with autism as a result of Urea Cycle Disorder; I knew, that she knew exactly what she was talking about and so I believed her. Krista's older siblings played an essential role; by always speaking to her as if she could speak back.

2. I tossed out any ‘Debbie Downer’ therapists or health care providers in her life; at times, this meant that she did not receive certain therapies at all; but again, I had come to understand that it was better that I work with her with all of my love, support and belief than it was for a professional who didn't see things that way.

3. I only shared my vision for my daughter with people who believed in her ability; well meaning friends and relatives may want to help you "accept" your child's limitations. I finally came to understand that this was their position and realized that pushing the issue was only baiting them into an "oh you poor dear, it's sad that you have not come to terms with your child's disability" type of lecture.

4. Gluten and Casein free diet baby! Thanks to a miraculous accident; I bought the wrong Autism book at Barnes and Noble called Unraveling The Mystery of Autism by author, Karyn Seroussi. This started us on an amazing journey that lead us to the wonderful discovery that by removing these offending proteins my daughter's health would improve drastically and as a result of her improved health status, Krista gained many wonderful skills; much too many to mention here but improved speech was definitely a biggie!

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5. At 5 o’clock sharp every morning, Krista liked to crawl out of my bed and venture off to her play room where she'd play with blocks and just adored taking things apart. During this play time, I would get down on the floor with her, grab a block, put it near my mouth and just repeatedly say "Mama". The toy was used to bring her attention to my mouth, a technique that I learned while researching the Son-Rise program. This developed into me singing "Mama" over and over again and pretty soon my girl was saying "Mama"; so I'd check in with her daily to make sure that she still had "Mama" down pat and I then moved on to Dada and Baba etc... Some words came very easily and some did not; but I remained grateful for every word or approximation that this angel girl could produce, never giving a second thought to the ones that were really tough for her. Always referring to her speech as "developing".

6. Through Glenn Doman's book, What to do About Your Brain Injured Child (Brain injury in this context referring to any condition affecting your child's cognitive ability). I learned that I should listen out for different sounds that she would make; for example, many babies will babble "mmm". You catch the child saying "mmm" and you sit him down and say, "I have noticed that you can say "mmm". Now we will take that "mmm" sound and it will mean Mama". In this scenario, every time you hear the child babble "mmm", you will quickly reinforce this by saying something like, "You said Mama! I love it when you say Mama! You called me and I came!" My Krista is very high intensity and responds very well to intense, animated and even loud praise, so this method has proven very effective for us.

7. Good probiotics to clear up yeast in the gut and to help to heal Krista's gut was essential!

8. Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial.

9. We used MB12 shots with much success in Krista learning to string together longer sentences.

10. Lastly, in recent months, Lizzie talked me into supplementing with a fish oil that is specifically formulated to aid in speech development. We saw great results; I learned quite a bit about therapeutic dosing of fish oil at Integrative Nutrition where Dr. Sears of The Zone Diet was a guest lecturer and huge advocate for this approach. From this, I learned that Krista needed about three times the amount of fish oil than what is recommended for general health in order to be able to see an increase in ability for speech.

My determination for Krista to learn to speak started when she was a mere baby; she is now 10 and I'm still learning and remaining open to safe and effective ways of helping her in the area of speech; as well as, many other areas of her life that will help her to become an independent young lady.

If you are reading this and feeling a bit bummed out that you were not as convinced about the speech thing as I was or you feel like "oh had I only been that determined, maybe I would be hearing my sweet Angel's voice". Let me say this... DO NOT feel that way! There was something that seemed out of reach for your Angel that you were able to help him or her accomplish that I may have not been able to help my daughter to accomplish. We only have so much energy to expend in a day; I chose to expend it on speech. Another parent might be more consumed by helping their child to gain the ability to walk independently; maybe you always envisioned your angel riding a bike or reading, whatever it is, I hope our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of yours, and more importantly, your Angel's dreams!

Written by: Karen VanPuyenbroeck Angelman Today Magazine Associate Editor Karen.Angelmantoday@Gmail.com Karen is a certified Health Coach providing Nutrition Counseling services to the special needs community with a focus on Angelman syndrome. To learn more about her services, visit her website at www.AngelFoodsbyKaren.com.

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Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological problems. Children with AS often require around-the-clock care for their entire lives.

Parents of children who have AS often dedicate extra time, energy, and even money to provide a high quality of life for their child. Assistive technology, supportive care, and specialty medical treatments rack up expenses quickly. Parents may even find it necessary to take time away from work to be with their child. The resulting loss of income and lack of medical insurances can be financially devastating.

If your child has been diagnosed with Angelman Syndrome, he or she may qualify for financial assistance in the form of Social Security Disability (SSD) benefits. SSD payments can be used to cover your child’s expenses—including anything from food to supportive services to medical bills.

The following article will give you a basic overview of the options available to your family and will provide you with the information needed to begin the SSD application process.

Compassionate Allowances and Angelman Syndrome Typically, the SSD application process can take months or even years to complete. Fortunately, the SSA recognizes that individuals with severely disabling conditions may not be able to wait that long to receive disability benefits. For this reason, the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities. Applicants who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days.

Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing. You will not need to fill out additional paperwork or request to receive CAL processing. The SSA will evaluate your child’s claim and expedite it accordingly.

Social Security Disability Insurance and Supplemental Security Income The SSA offers disability benefits through two separate programs—SSDI and SSI. Each of these programs has very specific technical eligibility requirements.

SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers. Eligibility for SSDI is dependent on an applicant’s employment history as well as the amount of taxes he or she has paid into the system.

Children and young adults don’t often qualify for SSDI on their own record because they haven’t had the chance to work and pay into the program.

It is important to note, that if the child’s parent is qualified for SSDI or retirement benefits, the child may qualify for dependent benefits based on a parent or guardian’s earnings record. If your child is technically an adult, but was diagnosed with Angelman Syndrome before age 22, he or she is considered to be an adult child. Adult children may also qualify for a child’s dependent benefits.

SSI stands for Supplemental Security Income. SSI is a needs-based program that provides financial assistance to elderly or disabled individuals who earn very little income. Eligibility for SSI is based on financial need, not employment history.

To qualify, applicants cannot exceed specific financial limitations set in place by the SSA In the case of a child, a portion of his or her parent’s income will be “deemed” . This means that the SSA will evaluate the deemed income to determine whether or not the child meets the SSI financial eligibility requirements. Deeming occurs for children who are under the age of 18, unmarried, and still live with a parent or guardian. Parents’ earned income, unearned income, and financial resources will all be taken into consideration.

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Income and resources that will not be deemed includes the following: Welfare payments Public Income Maintenance (PIM), including Temporary Assistance to Needy Families (TANF) and VA pension for veterans Food stamps Disaster assistance Foster care payments Tax refunds on real property (property that includes land and/or buildings) Home grown produce used for personal consumption The SSA also makes the following allowances for living expenses—meaning that the following will be deducted from the amount of income deemed to your child: $365 a month for each additional child that you support. $710 a month for a single parent or $1,066 for two parents.

It is important to note that this amount will not be subtracted for parents or children who already receive public assistance.

Once your child turns 18, SSI payments will be based on his or her own earnings record.

Medical Requirements In addition to the previously mentioned technical requirements, your child must also meet very specific medical requirements to qualify for disability benefits. The requirements can be found in a publication known as the, “blue book”.

The SSA’s blue book contains listings for potentially disabling conditions as well as the specific medical criteria an applicant must meet to qualify under each condition.

The SSA has separate listings for adults and children. The specific medical requirement that your child will have to meet is dependent on his or her age. Your child will have to meet one or more of the following blue book listings to qualify for disability benefits.

Section 12.05—Mental Retardation (Adult) Section 112.05 – Mental retardation (Child) Section 110.08 B – Catastrophic Congenital Disorder (Child) You can access these specific listings on the SSA’s website.

Preparing for the Social Security Disability Application Process Even though your child qualifies for the Compassionate Allowances program, you will still have to provide thorough medical evidence that proves the extent of your child’s condition. Medical evidence should include records of your child’s diagnosis, treatments, response to treatments, hospitalization records, and medical test results. You should also collect statements from professional adults that interact with your child on a daily basis. This can include doctors, teachers, and therapists.

These statements should provide details about your child’s limitations and abilities.

The SSA may also ask for evidence of the following: Your child’s inability to perform age appropriate functions IQ test results showing a marked developmental deficit, based on age Other developmental delays and impairments in physical and mental functioning, again based on age You should collect these documents prior to beginning the application process to prevent any delays in the processing of your child’s claim.

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Starting Your Application The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent benefits.

If you are interested in learning more about dependent benefits, you should call the SSA’s main phone line (1-800772-1213) or contact the representative who handles the eligible parent’s claim.

To apply for SSI benefits on behalf of a child, you will be asked to complete two forms: the “Application for Supplemental Security Income” and the “Child Disability Report”. Currently, only the child disability report can be completed online. You will have to schedule an appointment with your local Social Security office to complete the application for SSI. If you are applying for SSI on behalf of an adult, you will have to complete the same process with an “Adult Disability Report” rather than a child disability report.

It is important that you realize how overwhelming and complicated the SSD application process may become. In fact, many initial applications are denied and require the applicant to request an appeal hearing. If your child’s application is denied, do not give up. The key to receiving disability benefits it to be persistent in your efforts.

For more information about applying for disability benefits visit Social Security Disability Help (www.disabilitybenefits-help.org) or contact Molly Clarke at mac@ssd-help.org.

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The Angelman Network was established in New Zealand as a Charitable Trust in 2011 (CC46746).

We seek to connect and support people impacted by Angelman Syndrome. ++++++++++++++ We are New Zealand’s only organisation solely dedicated to promoting awareness for Angelman Syndrome; Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings.

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READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE INFORMATION PAGES HERE: http://angelmannetwork.wordpress.com/ Our successful International Angelman Day celebrations held across the country: http://angelmannetwork.wordpress.com/learnabout/what-is-the-angelman-network/ For up to date info on Therapies: http://angelmannetwork.wordpress.com/therapy-for-as For information and ideas regarding Communication: http://angelmannetwork.wordpress.com/education-andcommunication For general information on Epilepsy in AS: http://angelmannetwork.wordpress.com/angelmansyndrome/angelman-syndrome-epilepsy/

and to actively promote and support the progress being made with worldwide research on AS. ++++++++++++++ Our Information Pages are regularly updated to include new/improved ideas and links as these become available. +++++++++++++++ Our aim is to offer an active and accurate website which will become a helpful resource for families and provide useful and reliable information for medical and educational professionals both in NZ and around the world.

WE ARE ON FACEBOOK AT: Non-profit page: https://www.facebook.com/theangelmann etwork Informal group: https://www.facebook.com/groups/10468 6089609200/

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Angels in Action Shea teaches himself to read!

By Carol Pulver of Florida Angel Mom to Shea 22 years old, AS Del +

Shea (pronounced Shay), our youngest, weighed a whopping 6 ½ lbs at birth. The largest of our 4 sons; his delivery followed an unremarkable pregnancy and he was born close to my due date. Shea’s Apgar scores (the tests done shortly after birth) were all normal/high. He had all his fingers and toes and everything was wonderful.

Problems began in the next couple of days when Shea had difficulty nursing. He continued to have problems feeding and was back in the hospital at 6 weeks with “failure to thrive” (the catch all phrase). While in the hospital, a visit from a speech therapist alerted us to the low muscle tone in Shea’s cheeks and his tongue thrust causing the inability for him to sustain a suck for more than a few seconds.

At home, as we worked to make sure Shea received the nourishment he needed, we began to notice some sensory issues. Moderately loud noises were very upsetting to him, he seemed to startle easily and he wasn’t meeting the milestones we were expecting in his development. The pediatrician told me I was worrying needlessly, that Shea was just a little behind in his development. Seeking a second opinion from another pediatrician, I was told to immediately schedule a neurology consultation, get an EEG and do blood work to check for abnormalities.

Up until this point, though my mother’s intuition was telling me something was not right, I still trusted our family pediatrician to know more than I did. I was wrong. I learned to listen to that intuition; to act on it. Through the visit with the neurologist and the blood work, we received some answers.

I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +). Shea was about 2 years old.

The neurologist gave us copies of articles from an early ‘80s medical textbook, describing Angelman Syndrome. He told us that our son would never be able to walk, to talk or to function as our other children and that we might as well “find a place for him”. The doctor painted a very bleak picture of the future. After leaving the office, my husband and I sat together in our car (as we cried) wondering what to tell our families; feeling quite hopeless.

We knew Shea’s “place” would be with us, as long as we can take care of him. We decided that we would do everything in our power, provide every opportunity, for Shea to be all he can be. Our journey has not been trial free, but the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear.

I want to share some of the things we’ve learned along this journey: 1. Always trust your intuition. No one knows your Angel(s) as well as you do.

2. Never put a limit on your Angel’s abilities.

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Shea taught himself to read.

We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a word on the card. We think he learned to read by watching his Disney Sing-a-long songs videos (over and over again), with the little bouncing ball over each word as it is sung. He still enjoys watching them.

3. You are your child’s greatest advocate. It can be tiring; sometimes it feels like we’re always fighting for our kids. Remember that no one else cares as much as you do.

4. Our kids are smart. They want to learn and they want to show what they’ve learned. Give them choices. Sometimes they process a bit slower, so it takes them a little longer to follow through after a request is made. Make sure teachers and therapists are aware of this and are patient.

5. Diet makes a difference. Good nutrition along with supplements can help with sleep problems and may alleviate the severity of seizures.

6. There are moms and dads around the globe that are dealing with or have found the answer to many of the problems/concerns you are facing. Connect with them. If you can, attend a conference or get-together (and Walk-a-thon) where you have the opportunity to be meet other Angel families. We help our Angels as we help one another.

When Shea was about 8 or 9 years old, we had the opportunity to visit with the neurologist that gave us the diagnosis (and pronounced the dismal life ahead for Shea). The Doctor wanted to use Shea as an example of a neurological disorder to a group of doctors and nurses. He was quite surprised (and said as much) to see a young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand the directions he was given by his mom.

We also explained that though Shea might have some developmental delays, the doctor using the “R” word in his discussion was not appropriate and was offensive. We hope that doctor learned to never put a limit on an Angel’s abilities.

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Reflexology

By Mariano Schiffini

At Casa Angelman Foundation, we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the benefits of this millennia old technique. Hyperactivity, ADD and the sleep disturbances that are so common in children with Angelman are being treated with reflexology yielding excellent results! Reflexology is a natural technique that is based on the principle that the entire body including organs and glands are reflected on specific points on the feet. Reflexology works by activating those centers through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating the self healing energy of the body.

Over the last year and a half, I have worked with over 40 children with AS. During this time, I have observed characteristics that have repeated themselves in the majority of cases. Lack of contact with the heel of the foot to the ground creates an imbalance that all children with AS whom I have worked with have. At the beginning of each session I evaluate the feet and identify areas of imbalance so that I can work on them based on the principles of water, air, land and fire. Each area of the foot has a “trigger point” that corresponds to the body system; for example, the toe area (air) corresponds to our head, sensory areas, mental state, expression and communication. By applying pressure here, we create harmony in this system; thereby, correcting the imbalance and activating the self healing energy that promotes a state of homeostasis.

During the initial session I work with the child to get him or her to be comfortable laying down on the table. Some children handle this more easily than others. With very active children it’s best not to cause distress. We increase the duration of horizontal therapy slowly until finally achieving 45 minutes of relaxation. The key point is the connection with the therapist that will grow over time, taking into consideration the appropriate duration for each child. As we begin the session, I introduce a playful activity that includes items that are light and of soft texture; it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity causes. This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it completely. At first, my work centers around relaxing the child so I can begin with the treatment technique. The treatment consists of working on different parts of the system including, circulation, digestive, lymphatic, respiratory and endocrine by massaging the corresponding reflexology areas. The ambience of the therapy must be well guarded. It is important to generate a calm and serene atmosphere that promotes relaxation while avoiding elements of distraction or interference. Instrumental music and some relaxing essential oil; such as, sandalwood or rose helps to generate pleasant sensations and wellbeing. In my work with children who have AS; I have noted improvements in the areas of increased attention, improved gait stability, eye contact and many children will actually fall asleep during the session. After the first few sessions children with AS often express a desire to return for further sessions and will participate happily.

In such an atmosphere of serenity and acceptance, devoid of judgment, bit by bit the individual strengths of these children arise and take their roots.

Reflexologist of Casa Angelman. For more information email mariano_schiffini@yahoo.com.ar Editor’s Note: It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who suffer from insomnia as demonstrated by a Chinese study http://www.reflexologyresearch.net/ReflexologySleepResearch.shtml.

Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman: “Hi, I am mother to Agustina Gonzalez, a 4 year old girl with Angelman Syndrome. I feel that the reflexology treatment that my daughter received at Casa Angelman was a great success! Agus fell asleep after the first 10 minutes of the therapy; once the session was complete, the therapist informed me: “She is asleep; don't worry, she will sleep well for 1-2 hours”, and 26 so it was; she was very relaxed. I strongly recommend reflexology for all children with Angelman Syndrome.”

Gluten Free Living

GF

By Isabel Orellana Over the years, gluten has become a much debated substance. But what is the fuss all about? It is estimated that 5-10 percent of the US population is sensitive to gluten. This would mean that 5-10% of our angels are sensitive. However, the number is probably much higher. When our angel first got diagnosed at 11 months we had never given him gluten because our pediatrician had advised us not to start with wheat before age 1. After the diagnosis and investigating about neurological differences and food related issues, it became clear to us that our angel would continue his gluten free journey for good. It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or later. For neurologically different kids it can make a huge difference and be an important contributing factor in maximizing your child’s health and facilitating development. But you might say that people have been eating wheat for thousands of years, right? Yes. However, people a few hundred years ago did not have to deal with many other factors such as a weakened gut due to medications and processed foods.

What is gluten?

Gluten is a protein found in various grains such as wheat, barley and rye. While gluten is not present in oats, people sensitive to gluten can react to oats due to cross contamination. This occurs when oats are packaged at a wheat processing facility.

Where do I find gluten?

Typical gluten containing foods are: bread, pasta, pizza, cereal, cakes, cookies and many processed foods with ingredients such as soy sauce, etc.

How can gluten affect special needs kids?

Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to gluten due to its inflammatory nature. For children with autism for example, removing gluten and other problematic substances such as sugar, dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom management.

What are symptoms of gluten sensitivity?

Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity. Not everyone who is sensitive has celiac disease; the most severe form of gluten intolerance. The most common symptoms are gastrointestinal issues (bloating, reflux, diarrhea or constipation), eczema and irritability.

What options are there?

Amaranth, buckwheat, corn, millet, oats, quinoa and rice (preferably whole grain or wild rice) are all gluten free options.

However, for our angels who are on a low glycemic index diet, I recommend watching gluten free alternatives carefully since processed alternatives such as store bought bread, cookies, pasta and pizza are often made with high glycemic index alternatives such as potato, tapioca and white rice and this could prove counter productive in other areas such as inflammation control.

Conclusion Gluten free living is a healthy approach for the entire family given that today's wheat is highly altered from its original state and therefore holds minimal nutritional value. Wheat is one of the 8 core allergy foods and as a simple carbohydrate can increase inflammation and related infection risk in the body. If you are looking for support on your gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook. Start your journey today! You have nothing to lose.

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About the Author: Isabel Orellana de Chang is a busy mum of two who, since her son’s diagnosis of Angelman Syndrome, has become passionate about learning all she can about healthy living. She applies nutritional therapies and keeps a toxin free home to maximize her son’s health and developmental potentials. She enjoys converting recipes to her family’s needs for maximum nutrition and healing. She loves doing research and sharing what has worked best for them as a family in order to help other special needs families. She juggles her time between her family, her business Guatebaby.com and the magazine Angelman Today. Isabel hosts the Facebook Group Angelman Syndrome & Alternative Health Approach supporting interested families in improving their Angels’ health and development. Her book Healthy Living for Special Needs will be coming out this summer.

Helpful links: http://online.wsj.com/article/SB10001424052748704893604576200393522456636.html http://www.naturalnews.com/gluten_intolerance.html http://www.mindbodygreen.com/0-7482/10-signs-youre-gluten-intolerant.html http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html http://www.celiac.com/ http://www.celiaccentral.org/non-celiac-gluten-sensitivity/

Some helpful tips to remember when meal planning: -Always keep it simple -Fruits, Veggies and Meats are naturally Gluten Free

Angelman

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Angels in Action Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy:

By Nealie Prewitt of Missouri Once Carter was diagnosed with Angelman syndrome; It didn't take long for us to learn what life with an "Angel" meant. Sleep deprivation, behaviors, therapies, colds that always got worse, and social obstacles were some of the biggest challenges for us and Carter. There wasn't a day that went by that I did not think, "there has to be something, some therapy, some approach, anything that I could do to make his life- our lives not so enduring. Sleep seemed to be the worst. I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an E.N.T. The E.N.T noticed Carter had huge tonsils and extremely huge adenoids. The E.N.T was confident that Carter was suffering from sleep apnea. At two years of age, Carter had surgery to remove his tonsils and adenoids. Sleep drastically improved but Carter still seemed to have cycles of very little sleep.

We then decided to take Carter in for allergy testing and imagine my surprise when Carter’s test results came back positive for allergies to wheat, gluten, dairy, beef, pork, cherry, and tree nuts. So that sealed the deal, we were going gluten and dairy free and everyone had to support the changes because Carter was allergic to it. It was amazing to see the differences in Carter after these foods that he was allergic to were removed from his diet. In a matter of days, Carter was less aggressive, more focused, reasonable, negotiate-able, his eczema went away, and his digestive system improved. Removing these allergens from Carter's body allowed us to see just how miserable he felt and what he was doing to cope with constant digestive discomfort, burning itching skin, and headaches.

Over his three short years, the very things Carter used to cope, quickly became habits and behaviors - the head banging, pinching, hitting, throwing, and yelling instantly improved but did not go away, and Carter had also learned to use these behaviors when he was frustrated, unsure, or when he just didn't want to do something. Carter yearned for peers but struggled to interact without becoming aggressive. Even though Carter's diet had now become natural to us and made a huge impact on our daily lives; something still seemed to be missing. Life was still very overwhelming for all of us at times. If Carter eats dairy or gluten or a combination of the two or any other allergen, Carter is visibly a mess!

He will react to any impulse and sensation without thought or concern for anyone including himself. Still there is that missing piece that leaves Carter aimlessly floundering thru each day.

Knowing that Carter deserved and needed more, we began to investigate our options. In a meeting with our advocate, we learned of a school that provided RDI therapy. Carter has now been attending Dynamic Pathways for 12 months and I can not tell you how much the RDI approach has changed our lives- especially Carter's life! This approach seems to be that missing piece that Carter needed.

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RDI stands for Relationship Development Intervention. Brad and I are still learning about Relationship Development Intervention and how to consistently implement it in our family’s life, but I do know what RDI looks like. I see RDI everyday when I look at Carter and see my Angel happy, growing, maturing, successful, and building social relationships without aggression or major frustration. I see Carter having his own thought processes that are appropriate for the situation he is in; he is not trained in social graces but has been given the ability to think for himself about how to make socially acceptable choices.

A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope with emotions. 12 months ago if a random person was crying or angry, Carter would hit himself, that person or whomever was in reach. Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask "what is wrong?" or "is everything ok?". If the person is a friend or family member, Carter will go to them and rub their back and with gestures ask, "what is wrong?" If the emotion is too much for him to understand or deal with, he will give the sign for finished and want to leave the area. For Carter, gaining understanding of emotions and what to do about it took a lot of time, work and support and is still a work in progress as he is making the connections that something happened to cause the emotion. In the beginning, Carter would react instantly with negative responses to emotions he could not or did not understand so Brad or I would stay physically close to Carter, guiding him with either physical contact or cues through body language.

If Carter was banging his head we might put a pillow, a soft surface or our hand between Carter's head and what he is banging his head on, and then give him a visual cue by shaking our head no. As time (a lot of time) went on Carter would bang his head less and look to us for a cue when someone was crying or upset. When we noticed he was rarely hitting his head and consistently looking to us when someone was upset we began modeling appropriate behavior; we would step back and watch the person that is crying. When Carter started to follow our cues without head banging and could choose to step back and look at the person that is crying on his own or with little to no cues from us, we started modeling a new behavior. I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person was upset.

When Carter consistently started to come to us or Baylor when someone was upset, we very slowly and cautiously started modeling the next step and we would ask the person what was wrong or if they were ok. Currently asking the person if they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away from him; he may swat at them as if to hit them; so, we supported him where he was and added the option to "flee�. Flee means he can sign or gesture finish and leave the area the upset person is in. This has taken Carter (and us as parents) a lot of time but he has gained a lot of other thinking processes too during this time.

Carter still has his moments but they are few and far between and he quickly regains his "self-control" or regulation. I love this approach because as a guide- everyone is taught and allowed to support Carter. Sometimes Carter needs strategies to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support; but no matter what Carter's behavior is, the guides, models, teacher, whatever you want to call them are supportive and are modeling the flexible thinking it takes to learn the relationships and connections that are a part of the world. This approach comes without candy or food rewards and motivation, there is no place for shameful looks or humiliating comments; a behavior can be overlooked when there is growth in another area but heartless ignoring has no place in this approach.

With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning. I am so relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and rebuilding relationships that are allowing him to gain flexibility in his thinking, and the only way he was able to start doing this was through Dynamic Pathways and the RDI approach.

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ANGELMAN SYNDROME IRELAND The organisation was formed in November 2011 to:  Provide a support & information network offering fact based knowledge about living with Angelman Syndrome for families, caregivers and service providers throughout Ireland 

Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland

Our voluntary board and advisory team are recognised in their respective fields of neuro-development, paediatrics, clinical trials, medical technology, business strategy, and finance & charity governance.

BOARD OF DIRECTORS:  Dr. Kevin Dunne—Consultant Paediatrician, University College Hospital, Galway.  Mairsil Claffey—VP Clinical, Regulatory and Quality with Neuravi Ltd  Robert Moynihan—Finance & Governance  Ashling Kearns—Marketing Strategy  Sarah Roarty— Parent  Sara Hetherington—Parent  Vincent Gribbin—Parent

You can find out about our organisation on www.angelman.ie

INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe.

The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date which we would all observe and celebrate as International Angelman Day. The date voted on was February 15 th 2013 – February as it is already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15.

The purpose of this day is to: 1. Raise awareness worldwide of Angelman Syndrome 2. Mobilise people to action & encourage fundraising for the individual organisation in their country 3. Promote research and educational resources in the organisation’s own country.

4. Remember those people with Angelman Syndrome who are no longer with us.

Next steps that have been discussed are: 1. Formalise an international working group to plan and coordinate annual activities 2. Each country’s organisation write to their local or national government to ask them to officially recognise "International Angelman Day" as an annual event on February 15th 3. Develop a website as a permanent home and central repository for all activities

The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide. Its resounding success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry Angelman identifying Angelman Syndrome and also Dr Harry’s 100th birthday.

We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are delighted that International Angelman Day provided the inspiration for this e-zine “Angelman Today”. We wish the editor and team every success with this exciting endeavour.

Please email asinternationalday@gmail.com with ideas you may have to observe International Angelman Day in 2014 & beyond.

Dynamic Pathways, a Family Resource and Child Education Center, believes all children, regardless of their special need or diagnosis, have the ability to become mindful, engaged learners; someone who is capable of making decisions, solving problems, and communicating with others. Our program methodologies are influenced by the Relationship Development Intervention (RDI) Program & the Dynamic Intelligence Curriculum created by Dr. Steven Gutstein, as well as the mind development programs pioneered by Dr. Daniel Siegel from the MindSight Institute.

When children and families participate in our program, they acquire the skills and abilities to make mindful, thoughtful decisions. They learn to emotionally regulate themselves to be a part of family routines and social settings. Children learn how to learn, both academically and socially. Children become apprentices to their parents, so they can see the world through their eyes and learn the appropriate morals and values of their family. In addition, parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday situations. Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their child is experiencing, as well as, the necessary knowledge to discuss and troubleshoot obstacles when they arise.

Children who experience success with our program are observed to be happier and more thoughtful children who make appropriate decisions when challenged academically and socially. As a result, they exhibit less aggressive and/or inappropriate behaviors both at home and in social settings.

Our program is located in O’Fallon MO, just outside St. Louis. We work with families globally. Those unable to meet in person receive services via an online system. www.dynamicpathwaysllc.com 1662 Bryan Road O’Fallon, MO 63368 Phone: 636-980-1286

Most of us are either visual or auditory learners. But when these two senses are not enough, you may need to physically show an individual where the tongue, lips, and jaw should go for speech and feeding skills.

The Z-Vibe is an ideal tool to help you do so, as it provides targeted tactile cues within the oral cavity. It can also be turned on to vibrate! The smooth, gentle vibration "wakes up" the mouth and can help increase oral awareness, decrease mouth stuffing, reduce drooling, decrease oral defensiveness and texture aversions, and more. Vibration can also be very calming, soothing, and organizing, especially for sensory seekers who crave oral input. There are over 35 different tip attachments available from spoons to brushes to animals and more, which offer a vast range of sensory input.

For more information on the Z-Vibe, please visit our blog and website at www.ARKTherapeutic.com

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Happy 4th of July

From your friends at

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Healthy and Fit with 5 kids; 3 Angels!

No Time For Health and Fitness Because You Have an Angel?

Let me introduce you to a very special Texan Mom with five children, Jessica. Included in her five kid count; is Jessica’s 10 year old son Yeshua, (typical) who likes to help his mom with the babies and who loves spending time with all of his siblings. Next in line is 8 year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what he doesn’t like and he will always let you know. Then there is Jerusha, age 7 (Angel), very social and lively girl who keeps mom on her toes! That brings us to the babies, baby #1 is 23 month old Isiah. Isiah has not yet been officially diagnosed with AS but he laughs at everything and is slow to develop at the same rate as his older angel siblings; so mom is certain that she has been blessed with a third angel here. Then there is baby #2, the animated, on the go little Sarah (typical) who tries to get her partner in crime (baby #1, Isiah) to model appropriate baby behavior whenever she can. Mom says that baby Isiah’s reaction to this is to stare at baby Sarah for a moment, laugh at her and crawl away!

Does it get any cuter than that?! And if that were not enough to handle; Jessica is also a single Angel Mom! If ever I had spoken to a mother who has every reason NOT to exercise and eat well; this is the mother! Yet every single morning, Jessica situates her 5 children in front of the television with their favorite movie and proceeds to workout at home for an hour. Jessica says that because this is a routine that Mommy does every day, the kids understand that this is mom’s workout hour and that it is expected that they sit patiently and watch their movie until Mommy completes her workout. Jessica says “because I do this consistently and I am determined to get my workout done, my kids have become very accepting of the workout hour and my 7 year old Angel, likes to join in and imitate my exercise moves. I feel good about the example that I am setting for my kids with health and fitness. "My mother raised me this way and I am raising them this way and its something that I can feel good about”.

Q. Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be?

A. Well my daughter runs away from me a lot and before I became so faithful to my workout routine; she was able to outrun me and that’s not safe! Now I can keep up with her! Plus I have so much more energy when I exercise and eat healthy. There is no way I could keep up without the extra energy that I derive from my routine. Friends and relatives are always asking me how I do it. They’re my kids, I’m used to the chaos and I can handle it. I feel my kids deserve a mother who is able to play and run around with them, plus I feel strong and alert. Yeah this definitely helps me to be the Mom I want to be.

Q. What is your kids’ diet like?

A. Well since I’ve always believed that eating healthy was important, my kids are given plenty of fruits and vegetables and very little sugar. I did have to deal with quite a bit of criticism from some friends and family who felt like they were kids and I should just let them ‘eat like kids’ but I knew that they were my kids and I was committed to raising them with healthy food as a priority. Once my children were diagnosed with Angelman syndrome I knew it was even more important to keep their diet healthy. It hasn’t been easy to endure the criticism for my decision; but I feel really good about sticking with a good eating plan. I don’t want to worry about childhood obesity or diabetes and high blood pressure that I hear are happening with our children today. Plus my kids are big over eaters and other people in our lives don’t always understand that they must be made to stop eating. Once my angels got into an entire cake at a relatives house; ate the whole thing! They did not feel well after that and just laid around for the rest of the day. If I don’t monitor what they eat and how much, they will become sick and I’m concerned that they could face future disability as a result of the excess weight.

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Q. How is the health of your children?

A. Well they are all pretty healthy; I really can’t complain. My daughter had some symptoms of seizure activity starting about 3 years ago, but I didn’t recognize this trembling as being related to seizures. It became apparent a year ago when she had her first drop seizure at home and I rushed her to the ER; it was there, that I was first told she was having seizures. The neurologist prescribed just one seizure medication and it has been working very well for her. Today, she is healthy and seizure free! I feel really lucky that my two other angels have never had seizures!

Q. What was one of your proudest moments as an angel mom?

A. Well I had been working for a long time to teach my kids sign language; I couldn’t tell whether they were even paying a bit of attention to me. They didn’t seem to be catching on and were never using the signs that I was teaching them.

But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when she signed cookie, cracker and milk with absolutely NO prompting from me! It was an amazing day for me and I often wished that I had been able to record that moment. This experience made me realize that I just have to keep working with them because even when I don’t think they are “getting it”, they just might be.

Q. Is there anything else that you would like to share with our readers about your family or your experience with Angelman syndrome?

A. For me it was always important that my children be well behaved and well mannered. This means that I was sure to be strict with them. My children have to eat properly at the table with their backs straight and using utensils. In past years some of my family members would say “your too hard on them; they’re special”. I felt like I was preparing them for life. Today, those same family members now tell me what a good mom they think I am. I guess that they now see that they are well behaved and well mannered kids. Now they understand why I had to enforce rules with them. I feel really supported by my family now. I also have a church family who calls and checks on me and asks if I have everything that I need. It’s great to feel supported!

J e s s i c a

Note from the writer: I found this mother’s story so inspirational and the message here is to take really good care of yourself even when it’s not so easy. You might be a better mother for it or at least you’ll feel good while doing it! I know the next time that I feel too stressed to workout or there is not enough time to eat a healthy meal, I will think of Jessica and I will certainly feel inspired to have a good workout and meal!

-Karen VanPuyenbroeck

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Angels Make A Splash With WaterWayBabies!

Chances are your Angel likes to spend time in the water! Water play seems to be especially appealing to most individuals with Angelman syndrome, making swim therapy a popular option. Now, with WaterWayBabies, parents can provide their child the simplest, least expensive, easiest way to experience immense joy and sense of freedom. The WaterWayBabies neck ring allows independence and safety. Arms move freely without the binding restriction of a life jacket. And the body is held upright, not back-floating as with other bulky head floats. So your child can join in the fun playing comfortably in the water with friends or swimming freely on her/his own. With your Angels’ strong desire for personal interaction with others, the socialization benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience.

Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later.

WaterWayBabies is an excellent way to help your infant catch up on missed milestones. Regular and consistent use of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over, sitting, standing or walking. This is a fun activity that you, the parent can provide in the comfort of your own home.

Difficulty sleeping is a common occurrence for individuals with Angelman syndrome. One of the first noticeable aspects of using the WaterWayBabies System may help improved sleep pattern, which means parents get more rest too!

Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth. Strengthening the neck muscles has been noted to improve swallowing coordination, and one child was even noted to have acquired a cough/gag reflex (when there was none) after 6 months of daily swimming in the neck ring. Seizure medications often slow bowel activity; water’s gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI motility) so that constipation is relieved and digestion enhanced. As your Angel ages, obesity can become an issue; swimming is an excellent activity for overall fitness.

Strabismus (crossing of the eyes) is common in Angelman syndrome. Ophthalmologists have noted vision benefits from the rotational spinning a child does in the neck ring. The bright green color of the Waterway pool stimulates visual perception as does placing brightly colored water toys within arm’s reach. Additionally, if your Angel has light pigmentation of the eyes (and skin), the Waterway System will protect from the sun’s harmful rays; along with the benefit of avoiding the high chlorine content of a public pool.

Most individuals with Angelman syndrome make steady developmental progress and do not regress. The three sizes of neck rings will fit infants as young as two months and through young adulthood. Encouraging independence as much as possible is mutually beneficial. Make learning a game by treating your Angel to WaterWayBabies! www.waterwaybabies.com

Here’s what Angel Mom Isabel Orellana of Guatemala had to say about the product: “Eddyto has been using the Waterway Babies neck ring for almost one year and loves using it. It gives him a lot of independence in the pool and tub (always supervised of course) and has helped him strengthen his hypotonic muscles. We love it!”

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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 rate in the AS community certainly is high: We have a large number of single mothers and fathers, as well a many blended families, where the one of the parents is not biologically related to the Angel.

This essay is not intended to look into the causes of divorce, but into the stresses within an AS family marriage and how to deal with them. The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses winning out over the reasons the couple married in the first place.

What are those stresses ? They are different for every family, with just as wide a variety as our Angels, themselves. As a partial (and I do mean partial) list, here are a few: · · · · · · · · · · ·

sleep deprivation constant messes frequent breakage of items around the house seizures G/GJ/NG/NJ tubes multiple/frequent surgeries Childrens Aid involvement unhelpful/non-understanding family and/or friends finances lack of respite worry about future for Angel

… The list goes on – If you, reading this, are an Angel parent, you know I've missed out on a TON of stressors in a marriage.

It is important to point something out right away: Very few of the stresses above are going to go away: They will always be with you, as long as your child lives with you – In fact, even if they move to a dedicated home, many of these stresses will not go away. What this is about is dealing with the stresses between each other, man and woman, husband and wife (or husband and husband or wife and wife) in a marriage that has an AS child in the mix.

The question, though, is how do you deal with these stresses? Not just in your own headspace, but with those around you; Your spouse, your children and your friends and family?

We all deal with stress differently: Some internalize everything, appearing as if they are unflappable and invincible. Others “fly off the handle”, yelling, throwing things or a general, foul disposition. This article is about how we deal with stress and take it out on our spouses.

More often than not, one spouse will feel like they are “doing more” in the marriage. This often leads to resentment, anger and an unpleasant atmosphere in the home. It can also lead to negative health effects, such as high blood pressure, ulcers and headaches, to name but a few. What is often surprising to the spouse that feels they are doing more is that their partner, the one they may think of as “that lazy bum” - feels the same way. No doubt, some reading this will snort in disgust, thinking that with all that happens in their day, their spouse could not possibly think they even approach their contribution, but: Your contribution to the marriage is entirely subjective. Unless your spouse is unemployed and literally sits, staring at the walls all day, the chances are good that their perception of the distribution of contribution in the marriage is very different from how you may think it is.

I am not saying that the disgruntled spouse is always wrong about their perception – but they are not always right, either.

So what does this mean? Is there some magical solution to all of this that would get rid of at least that one stressor, that would even out the perception of unequal work around the home?

Yes, there is indeed a solution, but it is anything but magical: Communication.

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Yes, it's a tired old cliché, but here's the thing about clichés: They are often rooted in fact. Here's the other thing about communication: It's a two way dialog. It Is not a “bashing session”, it is not a lecture, scolding, ultimatum or whine fest. It is often uncomfortable, because a true dialog about what is stressing you out about your spouse means listening to what stresses them out about you and accepting it.

Here's an interesting fact: Most marriage counselors will tell you this (in fact, many will tell you this before they hear you speak at all): No marriage exists where all the problems are caused by one individual. None. Nada. Not one. No exceptions.

For many, this is not only uncomfortable, but difficult to accept as true. I know this, because I was one of those people who thought I was “doing it all right” and all the sources of problems were not coming from me.

I. Was. Wrong.

Until you accept this, basically, that you are not perfect, the stress in your marriage will not go away. In fact, if you are thinking, right now, that this is wrong, that your spouse is the single, sole cause of all the issues in your marriage, you should stop reading right now: You have not reached the stage of personal development where you are capable of having a truly equal marriage.

So here's the thing: There is a reason for each of your spouses annoying behaviors. To be perfectly fair, some of those reasons may be silly, some of them may be petty and some of them may be selfish. Of course, some of them may also be very, very valid, as well, but you're not going to learn those unless you communicate with your “other half”.

Very often, that “reason” they are not doing something that you would like them to do is – surprise! The same reason you do not do things they would like you to do. Imagine that: Men and women, more equal than not ! Of course, this often leads to revealing that the couple is engaged in a very bad habit: The tally system.

The tally system is quite simple: Most of us with siblings did this as children: “Well, I did X and Y and she only did Z, therefore, I don't have to do anything else until she does!” - What's surprising to most is that the partner feels the identical way. Here's the secret: There can be no tally system in a marriage. There will be days where the wife does more than the husband.

There will be days where the husband does more than the wife. There will even be weeks where both of these are true.

However: You can't “add up your tally” on a weekly or even monthly basis: You have to look at it over the course of the entire marriage: Yep, I'm talking 50, 60 or even more years.

You can not, however, look at this “overall tally” with only your eyes: As mentioned above, the chances are extremely good that if you are the one feeling you do more, your spouse feels the same way. Here's the shocker: When you actually sit down and have the conversation about what each person feels they contribute, not only might you find it surprising that they feel they contribute a lot, but that they are correct.

So, how do you go about having this “communication” thing ?

First, you have to use truth. No “beating around the bush”, no roundabout ways of getting to the point, no subtleties, just the plain, unvarnished truth. (Mind you, this is not a license to be rude or unfeeling, either!)

Often, it can be started something like this: “Honey, we've been going around in circles, getting on each others' backs and getting angry and annoyed at each other more often than we are happy with each other. We need to get back on a level playing field. Can we sit down this Friday evening, after the kids are in bed and have a frank discussion with each other ?”

How you ask is just as important as asking, itself: You don't want to “ambush” your partner, so asking to have the discussion “right now” isn't fair – In other words, you've had time to think about it, yet the idea is new to them. The tone is important, too: It is vitally important to emphasize that you feel that you both have issues that need correcting, not just that you feel they are the ones that need to change (If you really do feel they are the only ones that need to change, the chance is near 100% that you are incorrect) – Finally, set a time when you are least likely to be interrupted by kids, life, or the need to get up early the next morning. Obviously, with an Angel in the house, this is never a guarantee, but you can pick a “most likely” time.

When you do sit down with them – or even when they ask you right away what this is all about, start off with what you know has been annoying them about you. This is important, because you will be showing a willingness right up front that this isn't about criticizing only them and that you realize that you are just as much a part of the issue – and the solution.

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Your goal is to achieve having a partner that is “your other half” - Someone to be strong when you need to be weak and someone you can be strong for when they need you to be strong. That cannot happen if one feels like a martyr, like they're the only “super parent” or if they feel they're being used as a babysitter and a maid (Or, heck, all three).

Now that you've planned this discussion, what is it, exactly, that you talk about ?

It is often easy to start off with a little thing. Something you know you can do and you know your partner can do. Often, it can be a tiny, but annoying little habit they have that, if only they would stop, it would be one less frown in the day. It really doesn't have to be a big thing. In my case, it turned out that my wife and I each had a habit that really bugged the other: Me, I would leave cupboard doors open all the time – It drove my wife absolutely batty. My wife, she would leave a damp towel on the bed, after a shower – It made my skin crawl. Just changing those two little annoying habits, which certainly didn't seem like a big deal to each of us, ended up making a very pleasant change in our daily lives. If this sounds simplistic, it is because it is: Human beings tend to resist change – They resist it even more when it is someone else asking the change; This is why it is important to not only start small, but be equally willing to make a similar change. You are not only showing your partner that it is possible, but you are showing yourself that it is possible – and that it has positive results.

It is also necessary to get off your chest that which weighs on you most often. Frequently, it is the feeling that one partner contributes more to the marriage. It can be hard to get this across, without sounding like an accusation or like nagging. It is both the words you choose, as well as your tone that makes the difference.

For example, saying “I am doing all the bloody work around here. I cook, I clean, I stay up with our daughter all night, I go to all the doctors appointments and what do you do ? You sit your hind end on the chair and drink beer!”

Is very different from “I am feeling a little overwhelmed right now. From my perspective, I do an awful lot around the home: I cook and clean for our family, I stay up with our daughter at night, so you can get to work in the morning and I go to all the doctors appointments. It feels to me like your work day ends at five o'clock, when you get home, but mine seems to have no end – I'm not saying that I'm putting more into the marriage, but I have to admit, there are times, especially after a rough day, when I do sometimes feel that way” At the end of the day, both partners are facing – and dealing with – daily stresses that most people absolutely could not handle. That fact alone should be enough to make you look at your partner and think “I'm going to make him smile, today, no matter what!” - It should warm your heart and make you think “She's obviously just had a really bad day – I'm going to turn this evening into something she'll remember forever with a smile!”

Because, folks, you chose your partner: Your partner chose you: You are both raising an Angelman child together and that, even though this has so many worries, frustrations and terrible moments also has many, many moments of joy, triumph and pride.

TO BE CONTINUED… September edition

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Happy Canada Day From your friends at

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Thank you for checking out the first edition of Angelman Today

Great Resource Serving the Needs of the Angelman Community

PRICELESS Information Delivered Digitally to you for

FREE We are just getting started.

We would like to hear from you!

If you would like to submit an article for Angels in Action or tell us about a therapy that is working very well; please email your story to us at angelmantoday@gmail.com Next Month will feature Back to School topics, more research, more foundations, Angels in Action, helpful tips and resources to help you and your family TODAY!

www.angelmantoday.com

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