AS Resources
-
Government Benefits and Angelman Syndrome
By Eric W. Wright, Ed. D. Families often struggle to find the appropriate resources when it comes to meeting the needs of individuals with Angelman Syndrome. I remember nearly six years ago when my wife and I were contemplating selling our house because we were so confused on how we were going to care for our daughter and address our daughters needs related to mobility. Part of me was worried about how we would pay for medication, therapy, diet, and preschool. When the dust of the new diagnoses settled, we started on our path to find resources. This would be a piece of cake, considering my work as a Family…
-
Magnesium – A Simple Solution For Many Symptoms
Magnesium is one of the most important and vastly underestimated minerals. It is crucially important for optimum health and supporting some o f the following functions: -Activating muscles and nerves -A precursor for neurotransmitters like serotonin -Activating ATP, which supports the body’s energy and mitochondrial function. Many people may be deficient and not even know it. Some symptoms of deficiency are: -Muscle contractions and cramps or twitches -Numbness and tingling -Personality changes -Abnormal heart rhythms -Improper formation of bones and teeth -Insomnia -Irritability -Constipation -Headaches -Reflux -Seizures The Calcium and Magnesium Balance is Vital Calcium must be balanced with magnesium and adequate levels of magnesium are essential for the absorption…
-
10 Ways to Prepare for Back to School
By Jodi M. Duke, Ed.D. Special Education Advocate www.jodidukeadvocacy.com It’s that time of year again! It is hard to believe that summer is already winding down, and “Back to School” time is upon us! In order to help you and your child with Angelman Syndrome have the best year possible, I’ve assembled a list of 10 ways to prepare for back to school. 1. Create a one-page profile of your child to share with teachers and other school staff. I like to think of what a child would normally tell his or her new teachers during the first days of school and include as much of that information as possible…
-
Angel Family Experience with a Safety Sleeper
Angel Family Experience with the Safety Sleeper By Stephanie Moyer, Mom to Colin age 8 We have been using the Safety Sleeper for our son Colin for more than a year now. It has been a total game changer. Colin went from being up three to four hours every night, and he would kick the door and wake up the whole house. Since we received The Safety Sleeper, he sleeps 12 hours every night! We have seen the greatest difference when we travel. Before, we would go on vacation and Colin would average two hours a night — not much of a vacation! Now, we take his bed, and he…
-
Interview with Pamela J. Lyman, Author of the book ‘In the Company of Angels’
I was inspired to write ‘In The Company of Angels A Compilation of Stories and Poems on Angleman Syndrome, By Those Who Know it Best’ very shortly after our son Conrad was diagnosed at 15 months.” – Pam Lyman After the diagnosis I hopped on the internet and started searching for information about this diagnosis that had just rocked our world. What I found was minuscule and very scientific and impersonal. I wanted the human story, I needed to be connected with other parents, family members going through what I was going through. I needed to know that I would eventually come out of the dark hole I was in and…
-
Prevalence of Angelman Syndrome
How Common is Angelman Syndrome? The prevalence of Angelman syndrome (AS) can be estimated by using multiple sources of information such as medical practitioner records, hospital registries, laboratory test records and information from schools, public health facilities and developmental institutions. One of the earliest studies came from Denmark where children with the diagnosis of AS, determined from medical clinic records, were compared to an 8-year period having 45,000 births and showed a minimum AS prevalence of about 1/10,000 (Petersen et al., 1995). Another study of school age children, ages 6-13 years, living in Sweden showed an AS prevalence of about 1/12,000 (Steffenburg et al., 1996). Several…
-
ABA Therapy – Applied Behavior Analysis
By Mark Mautone, M.A. ABA When educating children with Angelman Syndrome (AS), many parents look for the best schools that have teachers with extensive experience working with children with special needs. The programs that the parents observe are classrooms that educate children with different disabilities. These classrooms are categorized as Multiply Disabled (MD). These classes are always perceived to be the “generic” solution for children who possess deficits that are difficult to address in other classes. In saying that, these classrooms can be very effective for most children. However, one type of educational setting that is overlooked, is a classroom that implements the principles of applied behavior analysis (ABA). ABA…
-
90% Improvement in Seizure Reduction
My interview with Dr. Ron Thibert from my blog in December 2012. I recently had the opportunity to catch up with the Angelman community’s very own trusted neurologist Dr. Ron Thibert! He is the Co-Director of the Angelman Syndrome Clinic at MassGeneral Hospital for Children in Boston. His specialties include Neurology and Epilepsy Service. Many families in our community travel from many other states just to see him. He really understands how to provide the best treatment for our kids! Angelman Syndrome is so rare and when it comes to their brain and seizures, our kids need the best! They need someone who has experience to draw from when deciding the…
-
WHAT IS A MAPS DOCTOR AND WHY SHOULD I HAVE ONE?
MAPS – Medical Academy of Pediatric Special Needs Interview with Dr. David Berger Wholistic Pediatrics and MAPS Physician The Medical Academy of Pediatric Special Needs is a group of professionals who offer a Comprehensive Education and Fellowship to Medical Professionals for the care of children with Autism Spectrum Disorders and related Chronic Complex Conditions. Their mission is to prepare medical professionals to deliver the best possible care to children with ASD and other special needs conditions. Under the guidance of Daniel Rossignol MD, FAAFP, this uniquely designed scientific evidence-based course of study is designed by clinicians, for clinicians. MAPS Physicians are at the forefront of helping families by thoroughly assessing…
-
Emergency Preparedness For Children With Special Needs That Follow A Therapeutic Diet
By Sybille Kraft Bellamy When Hurricane Sandy hit the East Coast in 2012 we lost electricity for 5 days and were under a curfew for a week with limited access to our regular food sources of supply. My son Max celebrated his 11 birthday with candles, a lot of candles! Candles were the main source of light in our kitchen. We used our generator for most of the day to recharge our laptop, phone, fridge, and to keep our furnace going. We had known for days that our area would be in the storm’s path. We were not particularly concerned by the flooding because we are located on a hill,…
