Books about Angelman Syndrome
Happy New Year! This is the first blog post of the year and we wanted to share all of the books that we could find about Angelman Syndrome. We polled the community for a list of books that they have read and recommend. Some books have been written by educators, parents or made to support individuals with AS. We are so excited about all of the books that are now easily available because they all help to raise awareness about Angelman Syndrome. Please let us know if we need to add any others to this list.
The first book on the list was written by Stephen N. Calculator Angelman Syndrome: Communication, Educational, and Related Considerations
Individuals with Angelman Syndrome (AS) present many unique challenges to professionals, parents and others who are committed to maximizing individuals’ competence while ensuring them the best possible quality of life. Angelman Syndrome: Communication, Educational, and Related Considerations is a unique, exhaustive compilation of existing material related to understanding the nature of AS and how individuals’ communication and related skills can be fostered most effectively
Angelman Syndrome A-Z created by Alice Evans, mother to 38 year-old Whitney, who is Del+, class 1.
Download the FREE PDF here. Buy the paperback book here.
Angelman A to Z is a resource for parents, caregivers, doctors, therapists, teachers, and anyone involved in the care of a person with AS. The information comes from tips, anecdotes, and discoveries from your experiences. Thank you to all who contributed to the 4th and latest edition!
Harry Bynum is a loving father with over 20 years of personal experience caring for a Special Needs daughter. He along with his wife Debra have both been “fully involved with every aspect of Callie’s life from the day she was born and continues to do so. Harry’s unique perspective on the “full agenda” of life and requirements of caring for someone that needs total attention and supervision 24/7 allows for these experiences, knowledge, and insights to be extremely valuable for everyone
Adventurous Angel by Chris Lee
Imagine not being able to talk but your smile and laughter just makes everything and everyone around you happy. Enjoy this journey with the special little girl who sees beauty in everything she does.
The How Was Your Day? student journal was designed to help improve communication with school teachers, classroom assistants, and paraprofessionals. Some children may respond with just one word when asked about their day and other children may not be able to answer at all. It’s perfect for young children or children with Angelman Syndrome. Also available in Spanish, Portuguese, and Dutch.
Siblings of children with rare disease are in a unique role. Our series, Siblings Stories, highlights that role using real and fictional stories to discuss the dynamic aspects of being a sibling to a child with Angelman syndrome.
Genetic Gems (Sibling Stories) by Abigail Turnwald MS CGC and Dr. Jessica Duis.
Siblings of children with rare diseases are in a unique role. Our series, Siblings Stories, highlights that role using real and fictional stories to discuss the dynamic aspects of being a sibling to a child with Angelman syndrome. We hope that siblings connect with these characters and find community in each story – and share these with their classmates, friends, and family!
“Este libro es un viaje de la mano de una madre y su hijo singular. Esta madre esperó palabras de un hijo que jamás accederá a la comunicación verbal. Palabras reemplazadas por ojos que brillan, por abrazos apretados, por sonrisas casi permanentes. La historia tan frecuente de diagnósticos tardíos llenos de sentencias que están ahí para ser desafiadas. Viajes a la playa, a India y también un viaje hacia el silencio, hacia la profundidad, hacia lo que de verdad importa. Hay otra protagonista: una Casa que cobijó y fue lugar de intercambio de vivencias y de catarsis. Una Casa testigo de pequeños milagros. Esta madre huye de los pedestales y abraza la imperfección. Este libro nos interpela porque desborda de amor en estado puro. Tenemos mucho por aprender. Estamos a tiempo. Acompañemos a Maxi y a Gianluca para enriquecer nuestra mirada, para derribar prejuicios y para viajar más livianos.” Silvina Chediek, periodista
Angels and idols by Regie Hamm
Regie Hamm’s life has all the twists, turns, and drama of a Hollywood movie. Only this isn’t Hollywood, and the cast isn’t actors. As a hit artist, producer, and songwriter, Regie was familiar with the drama of the press, the endless nights in the studio, and the uncertainty of his next paycheck. But nothing would prepare him for the drama of a rural Chinese hospital, the endless nights of raising an insomniac baby, or the uncertainty of her condition. There was nothing he could do except stand by and helplessly watch his life and career spin out of control. Regie’s story is one of a man and his family who overcame enormous obstacles. It is a journey that put him in the company of Angels and Idols–a journey that would test not only his physical resources but also his faith. Join author Regie Hamm as he recounts his rise, his fall, and his ultimate surrender to God’s will.
The Same but a Little Different by Grace Yvonne Murray
The Same But a Little Different, is a story about a young girl with special needs doing the best she can in life, and how her younger sister spreads awareness and joy. The story will teach compassion and encourage people to be open minded to what others might struggle with. We all do the best we can with what we are given.
NEW YORK TIMES BESTSELLER • GOOD MORNING AMERICA BOOK CLUB PICK • When a father goes missing, his family’s desperate search leads them to question everything they know about him and one another in this thrilling page-turner, a deeply moving portrait of a family in crisis from the award-winning author of Miracle Creek. OPRAH DAILY’S #1 NOVEL OF THE YEAR
Sibling Stories: Making Memories by Abigail Turnwald and Dr. Jessica Duis
Siblings of children with rare diseases are in a unique role. Our series, Siblings Stories, highlights that role using real and fictional stories to discuss the dynamic aspects of being a sibling to a child with Angelman syndrome.
Offers advice to siblings of developmentally disabled children, assuring them that they are not alone, and that other kids have had similar experiences
Le syndrome d’Angelman est une maladie neurogénétique rare dont la découverte est récente et reste peu connu y compris du monde médical et médico-social. Elle se manifeste par un retard psychomoteur, un retard mental sévère, souvent accompagnés de crise d’épilepsie. Cet ouvrage s’adresse aux familles, aux spécialistes et soignants: il a pour objectif de faire connaître le syndrome mais il est aussi une invitation à partager avec de l’humour, mais des larmes et parfois des “coups de gueule” le quotidien des familles.
François a 33 ans. C’est un bel homme brun aux yeux vifs et expressifs, couleur océan, au visage régulier. Il a beaucoup de demandes d’amies sur les réseaux sociaux : de très belles jeunes femmes qui ignorent, en voyant sa photo, qu’il a un tout petit quelque chose de différent et que c’est ce tout petit quelque chose concernant un de ses chromosomes qui change tout .Il s’agit de mon fils. Il y a quatre ans, j’ai commencé un blog, et beaucoup de mes articles se sont transformés en lettres à mon fils. Dans ces lettres, je m’adresse à mon fils d’abord. Je parle aussi aux professionnels, aux politiques, aux associations etc.. J’approfondis ma réflexion et j’exerce mon esprit critique sur certaines questions fondamentales qui sont si souvent absentes du discours sur le handicap.
Join a very special boy on a stargazing adventure in this heartwarming picture book that’s sure to spark your child’s imagination. This picture book was created with the assistance and support of the Angelman Syndrome Foundation. A portion of the proceeds from the sale of Up Where the Stars Are benefits the Angelman Syndrome Foundation.
Good Morning, Gus by Kelsey Laskowski
Join three young brothers as they partake in their daily adventures while expressing the joy and honor it is to love someone with Angelman Syndrome. From hanging out at home to on the beach and out on the town, these brothers sure know how to have fun! Step into the shoes of the two older brothers as they tell the story from their perspective, and speak on both the highs and lows of being the sibling to someone with neuro-diversities. This is a story not just about disability inclusion, but about seeing the worth in every human being and embracing one another for exactly who they are.
This book provides a comprehensive review of clinical and genetic issues, natural history, possible pathophysiological pathways, specific clinical problems (motor impairment, behaviour, learning difficulties, communication, sleep, epilepsy), clinical neurophysiology, neuropathology, rehabilitation and basic research in the field of Angelman syndrome. This condition is a neurogenetic disorder characterised by developmental delay, absence of speech, motor impairment, epilepsy and a peculiar behavioural phenotype. It is caused by the lack of expression of the UBE3A gene associated with various abnormalities of chromosome 15q11-13.
Angelman syndrome is a complex genetic disorder that was first described in 1965 by the English physician Dr. Harry Angelman. At the time, three children who presented a variety of disabilities were admitted to his center. Although at first sight it looked like they were suffering from different disorders, Dr. Angelman felt that there was a common cause for their conditions. He was right. The condition–caused by a chromosomal abnormality–Angelman syndrome is typically diagnosed between the ages of three and seven, and in some cases, it is misdiagnosed for other conditions. This informative book is packed with all you need to know about this devastating condition and includes causes, tests, and treatment options.
Angelman syndrome is a uncommon genetic and neurological disease characterised with the aid of extreme developmental lengthen and getting to know disabilities; absence or close to absence of speech; incapacity to coordinate voluntary actions (ataxia); tremulousness with jerky moves of the palms and legs and a awesome behavioral sample characterised with the aid of a completely satisfied disposition and unprovoked episodes of laughter and smiling. Although these with the syndrome might also be unable to speak, many step by step examine to talk thru different potential such as gesturing. In addition, young people may additionally have sufficient receptive language potential to apprehend easy types of language communication. Additional signs may additionally take place inclusive of seizures, sleep issues and feeding difficulties. Some youth with Angelman syndrome may additionally have special facial elements however most facial facets mirror the ordinary parental traits. Angelman syndrome is induced with the aid of deletion or extraordinary expression of the UBE3A gene.
In DAS ANGELMAN-SYNDROM BESSER VERSTEHEN – Band 2 – ERWACHSENENELABEN MIT DEM ANGELMAN-SYNDROM geht die Autorin u.a. auf folgende Fragen ein: Wie entwickeln sich bei Menschen mit Angelman-Syndrom im Verlauf des Lebens Motorik, Kommunikation oder auch Epilepsie? Welche speziellen Überlegungen bezüglich der Medikation oder auch bei den Laborparametern sind von Bedeutung? Das Verhalten und das Lebensumfeld wie z.B. Familie, Tagesförderstätte oder auch Wohnheim sind ebenfalls wichtige Themen in diesem Buch.
This attractive notebook features 144 clean white pages with lines and a beautiful matte finish. Size is 6×9, which fits neatly in most purses and backpacks.
Eddyto’s journey is the story of a young boy who against all odds after being diagnosed with Angelman Syndrome, complex epilepsy and being nonverbal, tries to live a normal life through everyday inclusion. Eddyto enjoys going to school, playing with friends, reading books, and going to the movies and theatre. Eddyto is part of a family that supports him in reaching his maximum potential.
Jesus, Let’s Talk by Lisa Jamieson
A delightfully visual exploration of basic prayers for the young and young at heart. “Jesus, Let’s Talk” helps children, early readers, and people with developmental differences enjoy the sweet basics of conversation with Jesus. There are many ways to worship and this natural approach to prayer inspires both the young and young at heart.
An Angel Among Us by Lee Spinggate
This is the story of one family’s 35 year experience with a profound developmental disability. This extraordinary journey has changed their view of the world, rearranged priorities and transformed their lives. Scott has Angelman Syndrome, a genetic aberration of the 15th chromosome. He has never spoken a single word in his life and virtually all aspects of daily living are dramatically impacted by his condition. While his cognitive and physical challenges are immense, there resides within this incomparable young man a God given capacity to love and be loved. In his unique way, he has changed the world by opening the hearts and minds of those who come within his orbit. His gift to the world is his ability to make those around him better and more productive human beings. Is there a greater calling?
This book was written by a girl with Angelman syndrome to describe her communication journey. People with Angelman syndrome have complex communication needs. She chronicles the process she went through toward freeing her inner thoughts. Rylee started this book at 9 years old and finished three years later. This book is intended for you to see the hope.
Laura’s Journey by Donna Webernick
This book is about my daughter with multiple diagnosis, one in which is Angelman syndrome and autism. The long journey of aggressive behaviors. If you have a child with behavior issues or have multiple diagnosis, such as Laura, or know some one that does, you are not alone.
In ‘Inclusion Matters: Parent and Teacher Support for Children with Angelman Syndrome,’ Molino provides a comprehensive guide for parents and educators navigating the challenges and opportunities associated with Angelman Syndrome.
More books covering a broader special needs niche, including diet therapy can be found on the Ultimate Special Needs Shop.
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