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Camps | Causes of Angelman Syndrome | Celebrations | Clinics | Clothing | Communication | Community | Conferences | Conservatorship | Constipation | Coping

 

Camps

*** This information appears on the ASF website under Recreational Resources

Camps for Children with Special Needs

My Summer Camps A camp resource guide where you can search by disabilities and or states, to find a camp close to you that meets your needs.

Camp Resource  Search 199 summer camps by specialty, location, gender and camp type (overnight or day camp) to find the camp for your child.

Choice Camps  Click the Special Needs Camps tab and select the options you are looking for to find the right camp for your individual with special needs.

Adaptive Aquatics Alabama Website: http://www.adaptiveaquatics.org/default.aspx?id=2  Adaptive Aquatics is a 501(c)(3) nonprofit organization dedicated to the introduction, teaching and advancement of adapted water skiing for children and adults with physical disabilities.

Welcome to Easter Seals Camp ASCCA  Alabama Website: http://www.campascca.org/ Camp ASCCA is Alabama’s Special Camp for Children and Adults. ASCCA is a nationally recognized leader in therapeutic recreation for children and adults with both physical and mental disabilities. Providing weekend and week long sessions, Camp ASCCA is open year-round.

Camp Smile/Life Without Limits Alabama Website: http://www.campsmilemobile.org/ The summer camp experience is about much more than horseback riding, kayaking and swimming in the lake. For young people across America, summer camp is a stepping stone on the road towards independence. Nowhere is this more true than at Camp SMILE. Hosted by United Cerebral Palsy of Mobile, Camp SMILE is a residential summer camp for individuals (ages 5-10) with and without disabilities. Here, campers not only have the chance to participate in physical activities like kayaking, fishing, and horseback riding; they also meet others whose abilities and life experience are similar to their own.

Lakeshore Foundation Alabama Website: http://www.lakeshore.org/ Lakeshore Foundation is a 501(c)(3) organization that promotes independence for persons with physically disabling conditions and provides opportunities to pursue active, healthy lifestyles. Lakeshore Foundation offers a wide range of fitness, recreation, athletic and education programs to children and adults who experience diagnostic conditions including spinal cord injuries, cerebral palsy, multiple sclerosis, stroke, amputation, and visual impairment. The Foundation also serves persons who have been diagnosed with arthritis, diabetes, chronic pain, cardiac conditions, and many other related disorders.

Challenge Alaska Anchorage, AK Website: http://www.challengealaska.org Challenge Alaska is based in Anchorage and offers therapeutic recreation, sports and education for people with physical and mental disabilities.

SAIL/ORCA Alaska Website: http://www.sailinc.org/orca.php ORCA (Outdoor Recreation and Community Access) is the recreation program of SAIL. ORCA’s purpose is to promote inclusive recreation and adaptive outdoor pursuits for Southwest Alaskans who experience disabilities. Our philosophy is that recreation influences all aspects of a person’s life: their employment, social life, physical and spiritual well being and a sense of place in their community. Challenging recreation opportunities give an individual a chance to recognize their ability to succeed.

Special Olympics Arizona Website: http://www.specialolympicsarizona.org/ Provides every person with intellectual disabilities a place of welcome, acceptance and the chance to be their best: Special Olympics Arizona is made up of passionate, committed individuals from every walk of life, who recognize the value and unique gifts of people with intellectual disabilities: And who, together, share, the common belief in dignity, equality, and opportunity for ALL people.

Arizona Disabled Sports Website: http://www.arizonadisabledsports.com/ The Mesa Association of Sports for the Disabled (MASD) is a nonprofit organization dedicated to providing sports and recreation opportunities to individuals with all types of disabilities. This could include but not be limited to developmental disabilities, orthopedic impairment, sensory deficit and/or neurological involvement. The Association provides year round sports training and competition through our Special Olympics programs for athletes who are intellectually disabled. In addition, sports and recreation opportunities are provided for individuals with physical disabilities through our programs sanctioned by Wheelchair & Ambulatory Sports, USA; BlazeSports America; Disabled Sports, USA; and the United States Paralympics.

Camp Twin Lakes Atlanta, GA Website: http://www.camptwinlakes.org/ Camp Twin Lakes is a unique non-profit organization in Georgia with campsites, day camps and hospital-based camp programs designed specifically for children with serious illnesses, disabilities and other challenges. In collaboration with its network of Camp Partners, Camp Twin Lakes provides an enriching camping experience for children who might otherwise be unable to attend camp. CTL was founded in 1991 and began camp operations in 1993 with seven camp groups. Since 1993, Camp Twin Lakes has served more than 40,000 campers. In our 18th season in 2010, Camp Twin Lakes will partner with more than 48 different organizations to offer year-round programs serving more than 7,100 campers.

Foundation for Dreams, Dream Oaks Camp Bradenton, FL Website: http://www.foundationfordreams.org/ The Mission of the Foundation for Dreams, Inc. and Dream Oaks Camp is to provide fun, educational, and recreational experiences in an outdoor camp environment to enhance the lives of children ages 7-17 with physical and developmental disabilities and serious illnesses.

Anderson Woods, Inc. Bristow, IN Website: http://www.andersonwoods.org/ To provide summer camp experience and safe, dignified, permanent residences for persons with mental and/or physical disabilities: To teach residents (to the maximum extent possible) to be fully functioning members of the local communities. Since 1979 Anderson Woods has been hosting those with special needs during the summer. Campers learn self confidence, trust and responsibility through working together, caring for animals, tending the garden, and enjoying the beauty of nature. Camp is a place where everyone is equal. We embrace all races and spiritual beliefs.

Camp Callahan, Inc. Website: http://www.campcallahan.com/ Camp Callahan, Incorporated, now in its 54th year of service to people with disabilities, offers a program that provides an exciting, safe, summer camp experience. Camp Callahan Inc., their volunteers, and the facilities of the Mississippi Valley Council of Boy Scouts of America, will combine to make this unique program a success. Camp Callahan is dedicated to serving youth with wide-ranging disabilities through a stimulating, liberating program in an environment that is physically and socially adapted to the personal needs of these very special campers. The camp has the specialized environment, equipment, activities, accessible buildings, and a trained adult staff to overcome the barriers that a person with disabilities would encounter at ordinary summer camps.

Camp Discovery Website: http://www.jayceecamp.org/ The Tennessee Jaycees Foundation, Inc. was incorporated on December 11, 1972, and was officially organized by the incorporators on February 17, 1977. It has been classified as a charitable organization by the Internal Revenue Service, meeting the requirements of Section 501(c) (3) of the IRS Code. The IRS has determined that the organization is not a private foundation (in other words, it receives its support from the general public). Camp Discovery is a camp for mentally and physically challenged kids and adults to experience the wonders of the summer camp setting. As with any venture such as this, there are two great needs to make for a successful Camp Season: campers and sponsors. We are in need of both as the 2011 season begins to be mapped out. If you know of a person with special needs interested in having a life affirming experience at our camp, please direct them to our application posted on the website.

Camp Caglewood Website: http://www.caglewood.org/#2/ Caglewood is a Special Needs Camping Program that serves individuals with developmental disabilities through active programming that provides enhanced life experiences, personal development, and respite opportunities. Caglewood fosters the core development of those we serve by engaging them in activities designed to promote independence and confidence. Caglewood’s programming inspires spiritual and social development through communion with nature. A camping trip with Camp Caglewood consists of counselor planned and led activities, crafts, devotionals, hiking, camping, swimming, and various forms of physical therapy and adaptive skills training. Caglewood is designed for both children and adults diagnosed with developmental disabilities including the autism spectrum, PDD, down syndrome, and cerebral palsy. Parents and caregivers send their loved ones to camp for respite care, and independence growth. Trips in 2010 will be fresh and will each be themed based on time of year and destination. Check out the schedule to see the new destinations and join us.

Camp Koinonia  Website: http://www.thecampkoinnia.com/ Camp Koinonia is an outdoor education program for children ages 7-22 who have multiple disabilities. The program was developed in 1977 at Virginia Tech as part of a class with the primary purpose of providing a meaningful, experiential learning opportunity for university students while involving children and young adults, some with severe disabilities, in outdoor activities that they would not be able to do otherwise. During the first year of the program a counselor/camper duo submitted the winning name for the program – Camp Koinonia. Koinonia comes from the Greek and means ‘fellowship’ and ‘caring community’. Since that time the purpose and mission of Camp Koinonia has been to provide a ‘caring community’ for our campers in sense of true ‘fellowship’. It is also said of Camp Koinonia that this is…’An Experience That Will Last A Lifetime’. This has proven true for hundreds of individuals over the years.

Vanderbilt Kennedy Center Website: http://www.kc.vanderbilt.edu/site/about/contact/default.aspx
Summer Programs and Community Activities: The Vanderbilt Kennedy Center offers a variety of summer programs for children, adolescents, and young adults with and without disabilities. Our camps are a wonderful way to encourage self-esteem, self-respect, and compassion while learning valuable life skills, making new friends, and discovering new interests. Vanderbilt Kennedy Center programs are unique in that they provide: model services for participants, support for families, training opportunities for college students preparing for educational or service careers, and o pportunities for participant and family members to take part in innovative research.

Quest’s Camp Thunderbird Website: http://www.questinc.org/camp.htm Since 1969, Quest’s Camp Thunderbird has been dedicated to providing a real summer camp experience for people with special needs. Because of the physical and behavioral challenges associated with Down syndrome, autism, mental retardation, Cerebral Palsy and other developmental disabilities, these children and adults aren’t typically eligible to attend traditional camps. Camp Thunderbird is their chance to learn new skills and focus on the remarkable things they can do, while making new friends and unforgettable memories. In addition to providing each camper with an outstanding experience, Camp Thunderbird’s six- and 12-day overnight sessions also give parents and guardians a much-needed break from the demands of 24-hour caregiving. For many families, this respite is their first chance to relax, spend time with friends, or even take a vacation knowing that their loved one is receiving quality care and attention.

Morgan’s Wonderland  Website: http://www.morganswonderland.com/index.html Morgan’s Wonderland, located in San Antonio, Texas, was built in the true spirit of inclusion to provide a place where all ages and abilities can come together and play in a fun and safe environment. Morgan’s Wonderland, the world’s first ultra-accessible family fun park, encompasses 25 acres of rides, attractions and activities for everyone, and all are welcome! Come play with us!

Camp Imua Wailuku, HI Website: http://www.imuafamilyservices.org/imua.html  Provides a Special Camp for Special Campers, Camp Imua is an incredible Maui tradition that began in 1976. Held each year in June at Camp Maluhia in the West Maui Mountains, fifty campers and over one hundred volunteers come together for a week of crafts, games, swimming, helicopter rides and general fun, all the while making new friends and catching up with old. We express our deepest gratitude to all those community members who come forward to make this unique camping experience for children with special needs such an amazing and inspirational week. Camp Imua brings the community and children with special needs together for a free weeklong, overnight recreational camp each summer. The Camp gives school-age children with “special abilities” opportunities to try new activities and connect with others. It gives volunteers opportunities to connect with the children and to give back to the community. Camp Imua also gives the children’s caregivers much needed time off. Fifty children attend and at least 150 community volunteers and numerous businesses from restaurants, helicopter companies, and live bands make Camp Imua memorable and fun for all. Over 70% of Camp’s expenses are met through in-kind donations.

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Causes of Angelman Syndrome

15q11.2-q13 Deletions (68% of cases) – the majority of AS cases are caused by deletions on the maternal copy of Chromosome 15. Due to genomic imprinting, only the maternal copy of UBE3A is expressed in the brain. The deletion thus removes the normal expression of this gene in AS individuals.

UBE3A mutations (11% of cases) – In these individuals, mutations in the UBE3A gene either prevent its expression or function. Thus these individuals do not have the appropriate levels of functional UBE3A in the brain.

Uniparental disomy (UPD; 7% of cases) – in UPD, the individual has two copies of paternal Chromosome 15. Because UBE3A is not expressed from the paternal copy, these individuals lack normal levels of UBE3A in the brain.

Imprinting defect (3% of cases) – These individuals may have a deletion of the imprinting center an Chromosome 15, but cases can also be caused by loss of imprinting information during the mother’s oogenesis. Loss of imprinting will prevent expression of the maternal UBE3A gene in the brain.

Clinical/other (11%) – In these individuals, all testing for Angelman Syndrome is normal, but they still meet the diagnostic criteria for AS. These individuals may have as yet unrecognized mutations that affect UBE3A or genomic imprinting on Chromosome 15.

Mutation examples

https://www.peds.ufl.edu/divisions/genetics/programs/angelman_syndrome/genetic_counseling.htm

Does the type of genetic cause of Angelman Syndrome make a difference in development?
(Genotype to Phenotype Relationship)  Dr. Charles Williams used this illustration (see below) in his genetic presentation at the 2014 CASS (Canadian Angelman Syndrome Organization) conference.

Genetic causes of Angelman Syndrome

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Celebrations

One of the big milestones that I will always remember is when Juliana independently blew out the candles on her birthday cake at age 10.  What a present that was!
Kathy Eichost  Fort Wayne, Indiana  angel Juliana (UPD), age 28

We are very proud of Chloe’s accomplishments, such as drinking from an open cup. Now, she is on her way to running, almost to our dismay because she seems to be pretty fast! Definitely don’t listen to others who say angels can’t do something because you will start to believe that. Our angels are so full of surprises!
Latrieva Boston, Kalamazoo, MI  angel Chloe, age 4

One day I was down in the kitchen when my older daughter called for me to come upstairs.  I was very busy, so it took some additional pleading.  When I got to the top of the stairs, my older daughter released our angel at the end of the hallway.  She walked into my arms for the very first time!  With tears in my eyes I raced outside and yelled, “Whitney can walk!”  My older daughter called out, “Does this mean we get to go to Disneyland?”  This was one of the best days of my life and a memory that continues to elicit a lot of emotion!
Alice and Mark Evans  San Diego, CA  angel Whitney, age 33

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Clinics for Angelman Syndrome

About the Clinics

The Angelman Syndrome Foundation has been the leader in creating a “one-stop-shop” medical and psychosocial resource from birth through adulthood for individuals with Angelman syndrome and their families and primary caregivers. By partnering with leading medical and research institutions across the country, the ASF founded the Angelman Syndrome Clinics to provide individuals with AS the comprehensive medical care they need throughout their lifetime. Previously, individuals would have to make multiple appointments at different times and locations to access the many resources necessary to address all of their needs. The Angelman Syndrome Clinics reflect the ASF’s mission and commitment to providing individuals with AS and their families the direct support they need to help improve quality of life.

Each Angelman Syndrome Clinic is completely comprehensive yet has its own unique capabilities that leverage the expertise and specialized care available from each partnering organization. At the clinics, individuals have access to a variety of individuals all specializing in AS:

Clinical geneticist Physical/occupational therapist
Neurologist Genetic counselor
Psychiatrist Social worker
Psychologist Nutritionist
Speech language pathologist  

The Angelman Syndrome Clinics also provide a foundation to support future clinical trials by having established sites with AS experts and patients in place to conduct those trials when they become available.

The ASF has committed more than $1.5 million to establish 17 clinics across the country during the next few years. The ASF has strategically identified locations that are within a 4-hour driving distance for more than 85% of the AS population in the U.S.—meaning a majority of families (>85%) in the U.S. will not have to travel more than four hours to access their nearest clinic, which is a primary goal of the ASF’s in making the clinics as accessible as possible. Each clinic will receive a three-year funding commitment of $50,000 the first year, $30,000 the second year, and $10,000 the third year, to establish the clinics and support them until they are self-sustaining.

Currently, there are two Angelman Syndrome Clinics established in Chapel Hill, NC and Boston, MA. The ASF is in the final stages to open the next clinic in Rochester, MN and has requested proposals to establish the next clinics in San Diego and Houston, with Chicago to follow. In alphabetical order, future target cities include Atlanta, Cleveland, Dallas, Denver, Jacksonville, New York, Philadelphia, Salt Lake City, San Francisco, Seattle and St. Louis.

Current Clinic Locations

Boston, MA
Angelman Syndrome Clinic at Massachusetts General Hospital
Established in partnership with Massachusetts General Hospital and the Lurie Center for Autism:
55 Fruit St. Boston, MA 02114
Veronica Robinson, Patient Services Coordinator (617) 726-6540
Patients must first speak with Veronica Robinson.

Chapel Hill, NC
Angelman Syndrome Clinic at University of North Carolina, Chapel Hill
Established in partnership with UNC and the Carolina Institute for Developmental Disabilities
101 Renee Lynne Court  Carrboro, NC 27510
Megan Mann, Clinical Coordinator
angelman@cidd.unc.edu

Rochester, MN
Angelman Syndrome clinic at Mayo Clinic Rochester
Gonda Building, 200 First Street SW  Rochester, MN 55905
For appointments, call (507) 538-3270

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Clothing

My daughter Rachel has used wristbands to take care of her drooling since she was five years old.  There are different colors (which I buy online) that compliment her day-to-day clothing.  I find this better than a bib or a hanky to wipe drool. She has become more independent when using wristbands.
Susan Quick

We use Little Keeper Sleepers for our angel to sleep in so he cannot access his diaper or get undressed at night.

Notice what other children (your child’s age) are wearing and put your child in age appropriate, popular clothes.

Use a leotard over pajama bottoms and under the shirt prevents hands getting in diapers during the night.
Kathleen O’Brien

Always get them dressed or undressed slowly.
Kelly Letourneau

We use cotton clothing, both bottom and top with no snaps or buttons. We keep her in leggings as she is learning to walk and we keep shoes on her to help with stability.
Stephen and Christa Shipwash  Austin,Texas  angel Sara, age 3

To keep nighttime messes “contained,” we use footed pajamas year-round (with the zippers moved to the back). Fleece versions are available all the way up to adult sizes and I try to stock up when they go on sale in the spring. For warmer seasons, I have them custom-made by a local seamstress out of lightweight fabrics like soft cotton (similar to a bed sheet) or flannel.  We have also reinforced the knees to make them more durable due to knee-rocking behaviors.
Lisa Jamieson  Minneapolis, Minnesota angel Carly, age 16

My angel feels more comfortable in looser clothing. Zippers, buttons, and starched shirts don’t make him happy. Use clothing that is cotton, stretchy and comfortable. Tee shirts and jogging pants work the best.
Michelle Ballante

We use bandanas with a washcloth sewn in to wear as a kerchief and a wipe for drooling.  Blanket sleepers in winter are wonderful as regular pajama pants fall off when she crawls.  We buy stretchy clothing to facilitate movement and for comfort.
Prash and Mahendra Naidoo   Reading, PA   angel Lavania,  age 22

Clothing should not be binding.  It should also be easy to remove like jogging pants and t-shirts.  Button-up shirts will be pulled apart and buttons ripped off.

Most of the things my son wears are all elastic. He doesn’t like buttons on pants or shirts. He loves things like Nike running pants and shorts and t-shirts.
Hollie Cook

Sleepers children cannot take off: http://www.littlekeepersleeper.com/store/Default.asp

“Life is Good” T-shirts (in adult and children’s sizes) are sturdy around the neck and display a great message!  They also contribute 10% of purchases to children in need. Many sporting good stores have the T-shirts or they can be ordered online at Amazon.com or from their website:  http://www.lifeisgood.com/
Alice and Mark Evans  San Diego, CA  angel Whitney, age 33

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Communication

See the AAC & Technology Resources page.

FRS  Custom Solutions http://www.frs-solutions.com/
(Communication devices, adaptive computer access, custom mounting solutions, environmental control systems, and custom adaptive accessories)

Get your angel involved in sign language and technological communication as early as possible. It will be difficult for about the first six months or so, but our Angel is slowly being able to tell us on her IPAD that she wants her cup or she wants to go!  We are so excited about this and so is she! It also gives her a sense of pride. Oh, yeah… She is proud of herself when she is able to get what she wants!
Elise Rice

Early intervention and introduction to Assistive Communication Devices is key to communication development. PECS is not always successful due to the mouthing and drooling that tends to be inherent in AS children.
Maria Sayre

Communication is everywhere.  Don’t limit yourself or your child to one way to communicate.  Make it multifaceted, broad, and model it to him/her.  If your child sees you using it, and it is meaningful, it may become a tool for him/her to use.  Language, pictures, signing, gestures, etc…are all examples.  Immerse yourselves.

I find the best communicating tool so far has been pictures or my angel pointing to what they want or need.
Melissa Jones  Cortland, Ohio  angels:  Andre, age 15, Christina age 14, Ryan age 13 and Ashley age 12.

Melissa, you are our inspiration!  Melissa and the angels’ father also have two other typical children.

We really only see negative behaviors if she needs something, so this is really a communication issue. She will bite, pull hair, or knock something over when she needs to use the bathroom or needs a drink, etc… I have learned to ask, “What do you need?”, and then direct her to her AAC device or the pictures we have posted around the house.
Sandy Blagg Grayson, Georgia, angel Elizabeth, age 13   Del+

Introduce sign language as soon as possible and continue to add to their signing vocabulary. Your child may not be able to the signs perfectly, but they can be “home” signs, “adapted” signs, or sign “approximations”. Give them a voice.
Mindy McBride

At an early age we started with sign language and sign approximations.  We went through several trials of ACC devices with varying degrees of success.  Presently (at age 27) we are using an Alt-Chat communication device; which she is able to navigate and get to the pages she wants. Basically she will use whatever mode of communication is most readily available; sign, intonations, finger pointing, gesturing, eye gaze and her AC device. She does a fairly good job of getting her point across.
Kathy Eichost  Fort Wayne, Indiana  angel Juliana (UPD), age 28

Take a structured hour just to observe–not interact.  Write down everything that happens.  Everything our sons and daughters do is part of communication.  We think we know our kids, but it’s amazing what you can discover in an hour of silent observation.
Susan Yuan Jericho, Vermont. Andreas Yuan, age 40

Always verbalize your child’s frustration and provide a gesture to express it, like crossed arms…”Oh Shucks!” Model an appropriate response to disappointment.

Aided Language Stimulation, or Aided Language Immersion is key. Give the individual access to a robust AAC language system (PODD or LAMP or similar). Then, model that system for the individual as much as possible. Start as young as you can!

Here is great advice from a speech therapist. Write up a “communication vision”. This document describes what we want our daughter’s life to be like as an adult.  For example, the document describes what we expect her to be able to do, to communicate, etc. Then, whenever we go to IEP’s or sit down to make goals with therapists, we have that long-term vision in mind and on paper. Consequently, small setbacks don’t throw us for a loop. Also, when we did our special needs estate planning, we had to write up a plan for her future life in case we pass away. This was hard to write but also empowering.
Christine and Giovanni Rompato Logan, Utah   angel Chiara,  age 5

The Proloquo app is an excellent communication tool for Angels.

We started with AAC (a dynavox) very early, as soon as she was diagnosed at age one. She now is four and is getting AAC therapy on a dynavox. I really recommend starting AAC as early as possible.
Christine and Giovanni Rompato Logan, Utah  angel Chiara,  age 5

Regardless of what any textbook, research, or doctor says every child with Angelman Syndrome is different and unique. Treat your precious Angel as though he/she will talk one day, and utilize all the resources, like speech therapy to work with your child. I always have faith and believe in miracles. Who knows? Maybe it will be my child or your child with AS who will be the first one to speak thousands of words!
Heather Mayugba

I find the best communicating tool so far has been pictures or them pointing to what they want or need.
Melissa Jones

Every child with Angelman should own an iPad.  They can take pictures with it or point to pictures later for communication.  ProloQuo lets them have their own voice.  My child loves movies and TV and the iPad gives them instant access.  We could never live without it!  Try the Gripcase. It works great.
Joanna Templeton

Never underestimate how much a child with AS understands. Do not talk negatively in front of them as if they don’t know/understand what you are saying because they do!
Janet Cromly

Always verbalize what you think your child is requesting.  Even if it is something you don’t want them to have like a chocolate bar, etc.  This will allow your child to be acknowledged and reduce frustration. For example,  “Do you want a chocolate bar? No, we need to eat supper.  Oh shucks!”
Jim and Deb Stadnyk  angel Justin, age 13

PROMPT therapy is useful for promoting speech production, in particular for helping create motor memories of letter sounds.

Always remember that behavior is a form of communication! Providing other, more positive means of getting the point across can lessen the need for the negative behavior. A functional, appropriate AAC system can really help for this!
Mary Pipal

Start communication and speech therapy EARLY!
Stacy Klinck-Cardenas Sanger, CA  angel Cale,b  age 8

I wish apps for our angels came in every language. Also I wish there were more interactive apps. I am trying to make an app for my son, although I know that it is very difficult.
Alda Colier de Zwart  Eijsden  Holland  angel Remy (who is a twin), age 27

Throughout my daughter’s life, I have spoken to her and for her with a higher pitched, expressive voice. This helps her feel included and it empowers her. I speak to her as if she understands every word I am saying.  When I express verbally what I believe she is thinking, there is always a touch of humor. She just smiles and laughs!  This has greatly brightened our lives, and I do believe it has fostered her cognitive development.
Alice and Mark Evans  San Diego, CA  angel Whitney, age 33

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Community

Our angels are very friendly so don’t be afraid to take them out in the community.  Let them help you in the store and put things in the cart.  Introduce your angel to people in the community.  Besides raising awareness for Angelman Syndrome, it will help people understand your angel.
Melissa Klass

Create a flyer or business cards to educate others if they stare or stop you while you are out in public. Direct them to multiple Angelman Syndrome websites so that they can understand A.S.
Mindy McBride

If you sit there…they will come.  We moved several times during our son’s life.  We needed to quickly get to know our new neighbors in order to keep Paul safe, as he would sometimes go outside without our knowledge.  We would spend as much time as possible sitting in the front yard after moving.  The children in the neighborhood would always start walking by to “check out ” the new people.  We would make a point of saying hello and encouraged Paul to say Hi, too (a wave and a noise).  Children, with their natural curiosity will generally ask “What’s wrong with him?”, or at least stop and look.  We found it very helpful to introduce our angel to the children by saying…
“This is Paul. He can’t talk very well, but he knows what you are saying and he really likes kids.  Part of his brain doesn’t work very well so he can’t move his tongue right.  That’s why he sometimes makes funny noises. And sometimes he falls down. But, he knows some sign language.  Do you want to see? And he really likes to give hugs, so if he comes up to you and you don’t want a hug, just hold his hands.”

There also always seemed to be a need for a conversation about drooling.  We would again let the kids know it is perfectly OK to be grossed out by getting touched with wet drooly fingers.  We would model possible ways to interact in these situations.
“Oh yuck, Paul, your hands are wet. Do you want a towel?” or “Paul, you need to swallow, please.”

These strategies took away their initial fear, opened the door to compassion and understanding, piqued their interest about sign language, provided them with ways to “help” Paul, and gave the kids permission to look at Paul and talk to him and ask us questions.  They always came back! Once the kids got “the scoop” on the new neighbors, they would tell their parents.  “Hey, there is a new kid on our street and he can’t talk and part of his brain doesn’t work…but he likes me…and he knows sign language…”  We could then get to know parents simply by sitting outside and saying “Hi!” to them when they came out with their kids.  Find ways to “give them” permission to ask questions and learn about your angel, your family, what you like to do, and what things they can do to help. People generally want to be kind but sometimes just don’t know what to do.  Help them to help you!
Elaine Martin  Byron Center, Michigan  angel Paul

As much as possible, try to keep yourself (and your marriage) engaged in the same kinds of community activities you would enjoy if AS was not part of your family experience.  It will be very hard at times, but make it a priority to seek help and emotional support from friends, as well as spiritual support from church and other faith-based relationships and activities. Serve others, too. Finding simple ways to reach out within the limitations of your own circumstances will keep you from becoming consumed with your own “woes”. This will help fight discouragement. Just stay “out there” (even as you are warding off nasty things like a sense of isolation and “battle fatigue”) because when you do, others will see your experience and be blessed.
Lisa Jamieson  Minneapolis, MN  angel Carly, age 16

I’m a true believer in people are people. My angel has been in girl scouts. The leaders adapt the badges. Other groups for our angel are Best Buddies and cheerleading with the varsity squad at her high school. She also enjoys musical theater, shopping and dining out. Find what they like and go with it.
Becky Worth

Take your child everywhere you can! Our daughter loves being out and about, and it’s great that people know her and say hello to her. There are some places we can’t go (it’s just too stressful), so we avoid them. We found three or four restaurants that are super accommodating, so we tend to stick to them.
Christine and Giovanni Rompato Logan, Utah   angel Chiara, age 5

Start building your child’s community now.  Make play dates, get him/her involved in activities.  Build the relationships early and they will stay with them through the years.  Support and foster their community like you would any child.  This will help create natural supports and true friendships.  It will also foster communication and safety.

Be aware that your son or daughter is part of many communities.  Sometimes it will be the community of the respite worker or direct care provider.  If this community matches the interests of your son or daughter, it can be a rich source of relationships.  If there is a mismatch, you might need to rethink the worker.
Susan Yuan Jericho, Vermont  angel Andreas Yuan, age 40

Expose your angel to as many things as you can.  They will adapt and enjoy being a part of the community.
Joyce Flint

We suggest including your angel in sibling sports activities.  Justin is the flag bearer and equipment manager for the football team. He led the team onto the field for games and helped carry the equipment for practices. It’s been such an incredible experience. The boys on the team are from all over the city and are always very excited to see Justin.  He is treated like a celebrity and loves all the attention. We now have a lot more people knowing Justin. He is accepted and there is a greater understanding of Angelman Syndrome throughout the community. It’s a win-win situation for both our son and his peers.
Jim and Deb Stadnyk  angel Justin ,age 13

Find activities in the community your child enjoys.  Develop a routine to take your child in the community.  Daily or weekly go to a park, short visits to a store or recreation center.  Most public places will try to accommodate if they know your expectations.
Donna Manhart Rowlett, TX  angel Douglas Joseph Manhart, age 25

***Appeared in the 1999 edition, Angelman Syndrome from A to Z.

“When we go out with David, we invariably get someone coming up to us saying, ‘I was in school with David,’ or ‘I worked at so and so when David was there,’ or ‘I remember David from the swimming pool,’ etc.

Children with Angelman Syndrome are well known and loved in their communities. Parents enjoy hearing comments like those received by David’s parents! They want their child to be an accepted member of their community.

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Conferences

***Appeared in the 1999 edition, Angelman Syndrome from A to Z.

Conferences are a wonderful way for parents, friends and professionals to network with each other, shares thoughts and ideas and get and give moral and emotional support.

One parent wrote:
I went to Seattle expecting a pep rally and maybe a few practical hints. I was amazed by the depth and relevance of the information presented. I learned more about Angelman Syndrome in three days than I have learned in the three years since my daughter’s diagnosis – and I had thought I was pretty well informed and up-to-date! The last thing I expected was an emotional experience. I thought that was just for “new” parents or those with very young children. In Seattle, I found that I could express the grief (of having a disabled child) with others. I felt accepted by an understanding “extended family” of more than a thousand members! Seeing Audrey Angelman embraced by the beautiful angel children (and hearing their guttural cries so familiar to my ears!), and feeling instant rapport with other families were experiences that no book or video could replicate.

***Appeared in the 1999 edition, Angelman Syndrome from A to Z.

It is natural to feel a little “blue” at conferences, especially for families who may be seeing older children with Angelman Syndrome for the first time. Even families of older children report that they feel a bit sad at conferences even though they have attended many and look forward to the “family reunion atmosphere”. Prepare for this and it won’t seem so surprising when the blues start to hit! Certainly, the “highs” far outweigh any sadness and exhaustion!

This is a link to information on the ASF Biennial Conference:
http://secure.angelman.org/index.cfm?fuseaction=cms.page&id=1038&eventGroupID=8A3147B9-C293-34EB-45313D35F6EF96C1&cmsContentSetID=8A644223-C293-34EB-49DA5BB618E75EE0

This is a link to the Canadian Angelman Syndrome Society (CASS) website.  The organization hosts biennial conferences.
http://www.angelmancanada.org/conferences/

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Conservatorship  (SEE ALSO GUARDIANSHIP)

On my angel’s 18th birthday we went to court to become our daughter’s legal guardians.  This is a legal necessity with HIPAA and dealing with governmental agencies on our young adults’ behalf. Make SURE to check all designated beneficiaries for all insurance policies etc… so as not to negate any governmental benefits from an inheritance, etc…  This is also where a special needs trust is very beneficial for our angels’ future wellbeing.
Kathy Eichost    Fort Wayne, Indiana   angel Juliana (UPD,) age 28

Here is an example of the need for conservatorship.  Our adult daughter recently had a corneal transplant. Before the surgery, the hospital needed to have a copy of our conservatorhip document in order to proceed with the surgery.
Alice and Mark Evans  San Diego, CA  angel Whitney, age 33

National Guardian Association Affiliates by State:
http://www.guardianship.org/state_affiliates.htm

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Constipation

For constipation issues, Miralax worked wonders for us. We went from once a day to every other day to twice a week. When our Angels are constipated, it can lead to fevers. This is a very gentle remedy and really does the trick.
Jeanne Seltzer

I would like to share our recipe for constipation. In Elena’s case this has been our “salvation”.  Now she goes to bathroom EVERYDAY for the first time in 30 years!   First, she eats two slices of natural pineapple.  After this, she eats three kiwis.  After this, I mix three prunes, three datils (peppers) and three dried figs.  I mix these with milk and one cup of All Bran cereal and 1/2 tablespoon of honey. She also drinks a glass of water.
Maria Galan   Madrid Spain   angel  Elena Palomares, age 30 

For constipation, I have found that Chia seeds are very good.  Use 1 part Chia seeds to 3 parts liquid (I use skim milk). Provide time to soak in a custard/pudding that can be flavored with yogurt and fruits. You could also use it when making chicken broth and vegetables.

Vitafusion Fiberwell Gummies (Can be purchased at pharmacies, as well as Walmart, Target, etc.). This chewable supplement provides 5 grams of fiber; has a peach, strawberry and blackberry flavor; and can be cut in half for easier chewing.)

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Coping

On the ASF website, see the Support Resources page for links to sites that offer support to AS families.

Remember to take time with ALL your family members. Our Angels can take up a huge part of our time and energy. It is important to make one on one time with your other children, your spouse, and especially yourself a priority.
Maria Sayre

Don’t forget that extended family (grandparents, aunts/uncles, etc…) are in need of support and encouragement over your child’s diagnosis too. Encourage them to seek out other extended family of AS individuals via social media like Facebook. This can be both beneficial for them, as well as helpful to you, especially during the initial phases of your diagnosis.
Rachel Brewer  N. Little Rock, Arkansas  angel Ava, age 4

Our older daughter said it best when she exclaimed that… “There is no normal! Everyone is different and needs to be cherished.”  She loves her little sister with all her might, but her little sis can still drive her crazy.  I tell her that THAT is normal! Siblings can and will drive you crazy. That’s their mission in life, but they can also be your best friend.
Leah Boice  Ellington, CT  angel Emily, age 7 Del +

The best advice we got after our daughter’s diagnosis was for us to find a therapist who could help us navigate the sense of loss, worries, etc… She’s helped us through the grieving process, through our worries and fears about the future, through medical procedures, etc…

Shake yourself loose of the dominant influence of the grieving model, and the idea of the death of the ideal child.  These are only “constructs.”  The reality is your child and your family and the joys and struggles of that.
Susan Yuan Jericho, Vermont   angel Andreas Yuan, age 40

The National Association of Child Development has been our family’s most important resource for many years. We deeply appreciate NACD’s invaluable perspectives about what we can do at home to help Carly grow to her potential, whatever that may be. They can help with sensory issues, mobility, good nutrition, seizures, sleep, and oral motor and communication needs. They are our main GO-TO when we have questions or want to be prepared for doctor appointments. They have helped us understand how to view Carly’s challenges holistically, considering the interplay between many factors when something is challenging her. They help us address underlying issues rather than just treat symptoms. They help us maintain focus and healthy balance in our home and show great respect for our family’s goals and values.  Investing in Carly’s health and well-being has taken much physical, mental and emotional energy, but so it goes when I want the best for any of my children.  Sometimes we have had to be persistent and patient for long years before recognizing the full reward of those efforts. But, tremendous blessings continue to unfold and we’re so grateful!

Remember to take time for yourself, even if it means time away from your spouse as well as your child. If you don’t take care of yourself, you can’t take care of anyone else!
Melissa Shipee Mansfield Center, CT   Jack, age 8  Deletion +

Choose your battles. Save your energy for the real fights.  Take a lot of deep breaths and exhales. You are in this for the long haul.

Take care of your health and well being so you can better care for your child.  Spend time away with family and friends.  Develop hobbies and activities that you enjoy.  Be happy with your life.
Donna Manhart Rowlett, TX  angel Douglas Joseph Manhart, age 25

Finding other AS families, be it through Facebook, state provided resources, or basic online searching is extremely important in not feeling isolated with a new diagnosis.
Nicole Handy

In Kalamazoo, Michigan there is an agency called Parent to Parent who work with caregivers of children with disabilities/special needs. They provide emotional support along with help with connecting to community resources, support groups, and family activities. I do know there are quite a few of these throughout the US, and would advise parents to become involved. It helps to talk to other parents who are dealing with issues  similar to your own.
Latrieva Boston, Kalamazoo, MI  angel Chloe, age 4

We have a beautiful marriage, but it isn’t easy! We try to find some time for us once a week and go to the movies or have a drink. Once a year we travel alone for 3 to 5 days.
Brisia Barba  Chihuahua, México, angel Mario, age 9

FORCE yourself to get away and use respite time.  Set up a regular routine with a care provider.  My husband and I (who both worked full time and are now retired) were often exhausted on weekends and dreaded the thought of being on a (respite) schedule.  Sometimes it just seemed easier to stay home and rest with our angel.  WRONG! It is better to make yourself get out of the house and it will invigorate you individually and as a couple.  Your angel will also benefit!!
Alice and Mark Evans  San Diego, CA  angel Whitney, age 33

***The following appeared in the 1999 edition, Angelman Syndrome from A to Z.
Many parents of children with Angelman Syndrome have experienced depression at some time. The early years can be particularly difficult as it is a time of letting go of dreams and adapting to a challenging and unexpected lifestyle. Coping with this new lifestyle is often made more difficult due to the fatigue that results from the lack of sleep experienced by many parents and families. The stress caused by sleep deprivation is a good reason to take advantage of available respite.

Feeling isolated can add to feelings of depression, so getting out of the house can be a real boost. Many parents have stressed that scheduling regular time to “get away” has been a huge help with their feelings of depression. Doing fun things as a family can be a way to boost spirits. Even those on a limited budget can plan to eat lunch out regularly on Saturdays, even if it means going through the drive-through!

Having an outlet is extremely important for any parent or family member. Siblings should be allowed to have “their own life and activities”, as well as Mom and Dad. Sometimes working outside the home is desirable for parents if everyone takes a teamwork attitude. In addition, regular exercise is known to boost spirits…talking a short walk can work wonders!

Almost every parent has reported that support from a therapist or support group has been helpful. Social media is an outstanding way to keep in touch with other parents and family members.

Last, but far from least, keeping a sense of humor in their lives is how most AS families survive and overcome periods of sadness!

 

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