A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
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Recurrence Risks | Research | Residential Placement | Resources | Respite Workers | Routines
Recurrence Risks
Research
Visit ASF Funded Research to see all the research projects funded by the ASF from 1996-Present.
The ASF supports projects worldwide in the quest to find treatments for Angelman syndrome and ultimately a cure. The Angelman Syndrome Foundation is dedicated to funding the highest caliber of research on Angelman syndrome. It is our hope that these funded researchers, and their collaborators and peers, will bring forth new discoveries that ultimately lead to safe and effective therapies that improve the quality of life for all with Angelman syndrome.
See Current Research Studies for a list of active studies looking for participants.
There are research studies happening at universities and medical centers throughout the country. You can help advance research by having your family or your individual with Angelman syndrome participate in research studies. Studies may involve a phone interview, surveys or mailing of information. Some studies may require you to travel to other cities. Others may involve blood tests, EEG’s and other medical procedures. Find out if there is a study that is right for you and your family.
As new studies and clinical trials become available the ASF will contact known AS families with the opportunity to participate. Make sure to complete the contact registry to stay informed.
Residential Placement
Angelman Family Contributions: Residential Placement
We kept our daughter at home until she was about twenty-one years of age. Deciding on group home placement was the most difficult decision we ever made. At that age she was not sleeping at night and some of her behaviors had gotten worse. Around that time we read an article written by a doctor who had a special needs child. In the article he explained that after his wife’s death, he had a very hard time caring for their son. His son was now up in his forties and the doctor was close to seventy. He said it was a very hard adjustment for both of them after his wife passed away. He then mentioned something that helped us make the decision with a better conscience. He stated that he wished he and his wife had been able to ease their son into residential placement sooner because their son would have gotten to know the program better and vice versa. He went on to write that he and his wife would have known they weren’t abandoning their son because they would still be there to monitor it all and help him to adapt. They would still see their son as often as they wanted. His reflections helped us in this process and now our daughter has been in a group home now for about ten years. She has her own room with other housemates. We pick her up weekly for outings, if not more. We can say with confidence that it was the best decision we could make for her as well as for us as we all grow older.
Linda
When Tip was thirty years old we had an opportunity to place him with a residential program and we took advantage of that. Though he is two hours from home, we are able to bring him to our/his house whenever we want. It is still a challenge to take care of him, but he moves about the house as if he’s never left. We feel blessed to be able to bring him home, cut his hair and sit with him on the porch. In the last twelve years we have learned how best to advocate for him and we are still learning. This was the right decision for us.
Jane, angel Tipton,
Thoughts of the future can cause a great deal of stress for parents, siblings, and other family members of individuals with Angelman syndrome. Fears about where the child will live, who will care for him or her, and quality-of-life issues are common. It is never too early to think about and begin planning for the time when the angel might move out of the home. This time is different for all families and each family must choose what is right for them. It cannot be stressed enough that the transition process from the angel’s home to residential placement, no matter what the age of the person, should involve the entire family. Encourage questions from siblings, grandparents, and other family members involved with the angel. Take siblings to visit the new residence so that they will know where their brother or sister will be living.
AS Family Member
Resources
ASF Family Resource Team: Contact the ASF Family Resource Team. A form is provided for you to contact Michelle, Lizzie and Eric Wright.
Michelle Harvey:Individual Education Plan (IEP) Issues, ASF IEP Bank, Educational Issues and Advocacy.
Lizzie Sordia: General Resources (Supplies, Durable Medical Goods, Products, Daily Living Products and Services).
Dr. Eric Wright: Resources and Services specific to State Waivers, Government Assistance, Insurance and Advocacy.
ASF Family Champions: See the list of ASF Family Champions for a list of Angelman syndrome parents who you can contact for information and support.
Educational Programs and Resources: To find a resources on various topics, click Resources. Some topics are listed on the left menu or you can select a category from the dropdown menu. There are resources available on adulthood in AS, communication, education, inclusion, household products and more.
Angelman Family Contributions
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 have helped us with sensory issues, mobility, 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. They help us address underlying issues rather than just treat symptoms. They help us maintain focus and healthy balance in our home and they 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. I want the best for all of my children. Sometimes we have had to be persistent and patient for long years before recognizing the full reward of those efforts. Tremendous blessings continue to unfold and we’re so grateful!
Lisa, angel Carly, age 16
Respite Workers
Angelman Family Contributions
Treat them well, offer plenty of training, and pray that they will stay.
AS Family Member
Always go through and consider wisely when making a decision on selecting one. Take the time to research, interview, and ask around!
Sarah, j.sorrels09@blueriver.net, angel Brantley, age 2, Del+
Realize that respite workers will come and go, especially as your child becomes an adult.
AS Family Member
Find you own staff whenever possible.
AS Family Member
Our child’s respite workers are his friends!! They do wonderful things with him that we are too tired to do. They have taken him to fraternity parties, amusement parks, concerts etc. The more fun they have together the better they get along.
AS Family Member
Trust that your angel will let you know if they don’t like a caregiver! Ours will hit and throw things at certain respite workers that he does not like.
AS Family Member
Let your staff know that you have cameras throughout your house when you first hire them. If they have a problem with that, they can take a hike!
AS Family Member
Trust your gut! If you think it isn’t going well with a respite provider, do not ignore that feeling. Moms and dads are always right!
AS Family Member
Social workers where your kids receive therapy can be a great source for how to find respite help and even financial support for them. Many of our helpers have been college students at a nearby school in majors related to special education or sports therapy.
Andrea, mcneilak98@gmail.com, angel Tyler, age 18, Del+ Class 1
Routines
Angelman Family Contributions
Find activities in the community your child enjoys. Develop a routine to take your child into the community. For example, go daily or weekly to a park, or go on short visits to a store or a recreation center. Most public places will try to accommodate your angel if they know your expectations.
Donna, angel Douglas, age 25
Begin any kind of daily living routine early and keep practicing. It may take years before your child can do the skill independently, but it is worth it. This includes hand over hand use of a spoon, pulling pants up and down when toileting, and bathing. I began putting deodorant on my child long before she really needed it so that she would be used to the sensation by the time it was truly important.
Laura and Jess, angel Leah
Establishing a routine early on has helped calm my son Coby. We dim the lights and turn down the television at about the same time every night. We then put him into bed at almost the same time and lay with him until he falls asleep. His older siblings also know to use gentle voices at night.
Maria
We try to keep to the same routine at home as much as possible and this helps with language understanding. We can say “It’s time for a bath!” and our daughter knows what that means. For eating, our daughter finally has the hang of using a fork. We tried for a long time with a child fork, and then we realized a sharper adult fork actually made it easier for her to stab the food. Our occupational therapist experimented with a bowl that was held at an angle so that our daughter could stab the food more easily.
Christine and Giovanni, angel Chiara
Routine is essential for our Angelman child. It assists with normalizing his wake/sleep cycle and keeps his behaviors to a minimum if he knows what to expect as the day progresses.
Terri
We are big on routines. It worked for our typical child, so we continued with it. We are not sure if we are just lucky or if it is our routines that help our angel have a pretty normal sleep pattern.
Leah, angel Emily, Del +
I believe in being consistent with how to react to things, but I don’t believe in routines for mealtime or bedtime. The reality in life is that you are not always able to stick to a routine.
Carol and Rick, angel Rob
My angel loves to help out with chores around the house. I usually give her a dust rag or paper towel and let her help me with chores. She loves it and I get a lot done!
Steve and Lee Ann, angel Ella, UPD
Routine. Routine. Routine. I have found that if Kade stays on a routine, all other areas improve.
Hollie
Routine, routine, routine! My son benefits greatly from having a routine!
Danielle and John, angel Alex
Routines are very important with my little angel. Having her get used to a specific routine is hard from the start, but when she is used to, she won’t go back. My 3 year old angel likes to stand while eating, but we taught her to sit before she eats. Now, she never eats or even drinks water unless she is sitting on a chair.
Angel aged 3
We feel that a very important part of routines is something the Angelman person can do to contribute to the household. Our daughter is responsible for putting her adult pull-ups away in her closet every month when they are delivered. She isn’t always interested in initiating the activity, but once she has put each package in its place she gets very excited and claps for herself. We all need to do things that give us a sense of accomplishment and Angelman individuals are no exception. The key is finding an activity that motivates them then making sure they are successful.
Debra, debradobrez@att.net, angel Megan, age 37, Del +
Having the same daily schedule is huge for our son. Especially naps and bedtime routine. If the schedule is off by a few hours he gets more anxiety and becomes restless.
AS Family Member
