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See the complete list of topics.

Testing | Theater | Therapies Toileting Tooth Brushing | Toys | Travel


Testing to Determine Angelman syndrome

The following is a table found in a Gene Reviews article, written by Aditi I Dagli, MD, Jennifer Mueller, MS, CGC, and Charles A Williams, MD, that shows the tests used for AS. 

table showing methods and genetic mechanisms when testing for AS

Possible explanations for the failure to detect AS-causing genetic abnormalities in the 11% or more of individuals with clinically diagnosed AS:

  • Incorrect clinical diagnosis
  • Undetected pathogenic variants in the regulatory region(s) of UBE3A
  • Other unidentified mechanisms or gene(s) involved in UBE3A function

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AMC Theaters offer sensory-friendly film showings to families affected by autism and related disorders, such as AS. See the schedule of upcoming films and participating AMC theaters.

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See the Resources & Education section and select Music Therapy or Physical Therapy from the Category drop down menu, for a list of resources.

Angelman Family Contributions

Start PROMPT therapy for apraxia as soon as you get a diagnosis! See the PROMPT Institute website and Kids Therapy Associates website for information.
Carolina, tinyangel5@yahoo.com, angel Liora, age 10 UBE3A mutation

Therapeutic horseback riding has made an enormous difference in Rebekka. While she has ridden horses off and on during the past 20 years, about 6 years ago we connected with a local therapeutic riding program that has changed her physical abilities (she shifts items from one hand to another, crosses midline all the time now, can throw and catch a ball) to the point where we discontinued physical therapy! She has learned (some) patience and loves caring for the horse, Geronimo. While she still has no balance to walk, she sits straight on the horse and has a very strong core. I wish we had started this years ago!
Lynne, lclefort@coomcast.net, angel Rebekka, age 32, Mutation

I want to share something that our physical therapist told us that might be helpful to other Angelman families.  During a session one day, I remarked that my son Jack was babbling more during PT than he does during his speech therapy sessions and she told us that movement encourages speech!  Who knew!  So if it possible to incorporate some sort of movement during speech therapy (rather than just sitting in a chair) that might encourage more babbling.  I definitely find this to be true for our son Jack!
Sayoko, sayoko.murase@gmail.com, angel Jack, age 2, Del+

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Applying Structured Teaching Principles to Toilet Training is an article by Susan Boswell and Debbie Gray through the University of North Carolina TEACCH® Autism Program. It gives a few tips on how to create structure and routine to toilet training for a child with Autism. 

Angelman Family Contributions

Big tip for this is TIMING.  We take our daughter in the morning, after school, and at night. This regularity has helped her stay dry more than anything else.
Sarah, bnamommyisfun@yahoo.com, angel Lily, age 14, Del+

Toilet training may take a long time but if you are patient it is well worth it. We started when my son (Del +) was two years old. He had problems sitting, so we used a potty chair that sat on the floor with a back and arms. We determined a bowel movement schedule first. It was right after breakfast, so at that time we would sit him on the potty. We gave him books to look at and he would stay until a BM was produced. He would let us know when he had to go at other times (usually after a meal). Toilet training for urine took a bit longer. We kept a two-week schedule in which every potty of the day and all liquid intake was documented. The day care and school also documented while he was there. This was a lot more difficult, but we saw slow progress. He was “timed trained” but he still indicated at other times when he had to go. He had a sound for potty and when he made it we immediately took him. He was five years old before he was dry all night. It was well worth the effort! He still needs assistance with wiping, yet he always indicates and lets us know verbally when he has to go to the toilet. We still put a TV table in front of the toilet so he can read a magazine or book while on the toilet.
Coral, angel Trent

Gavin had a lot of anxiety over going into the bathroom. He would stand in the kitchen and pee in his diaper on demand before we went somewhere. He was ready to wear underwear, but he wouldn’t go into the bathroom to pee. With him being a boy, we started having him pee into plastic cups in the kitchen. We took away the element of the bathroom that was giving him anxiety. He was very successful at peeing in the cup on demand. Soon after we started this he had to go poop. We then used two cups to catch the pee and poop. After about a week of peeing and pooping into cups in the kitchen, we moved into the bathroom and continued using two cups. After he was comfortable just being in the bathroom we had him stand in front of the toilet and pee into the toilet and still held a cup for the poop.  It took a lot longer to get him to sit on the toilet to poop, but he eventually transitioned to it. I also kept cups in the car for a long time for when he had to go and couldn’t hold it.
AS Family Member

Three (2 ASD, 1 AS) of my four boys have sensory issues, especially to loud noises. Getting them to use the toilet in public places was daunting to say the least until I found a trick that has works for us. I always carry a pack of sticky notes in my purse for automatic flushing toilets. We put a sticky note over the sensor and when my boys are done toileting they pull it off and throw it away. This way they are able to anticipate the flush and do not get scared by a loud flush mid-way through toileting.
AS Family Member

We attached a “bidet seat” to Kathryn’s commode. It had a seat warmer which helps her to relax and know to use the bathroom. It also makes it much easier to clean her.
Bill and Paula, angel Kathryn

We found it less stressful by practicing routine timed toilet training first. We bring our son to the restroom when he awakes in the morning, after meals, and before bed. For BM’s we just watch for facial expression and body movement.

As much as we would like to hurry the bathroom visits, we have concluded that it is best to accept the fact that it is going to take some time. We find ourselves quietly “meditating”- for lack of a better word- when our daughter is using the restroom. We look down, don’t make eye contact and WAIT! We have used “bartering” at times… “First, you go to the bathroom and then we’ll get up and eat…” But, truly the most effective technique for us is SILENCE AND PATIENCE!
AS Family Member

Our daughter’s school started “habit training” or timed training when our angel turned three. We thought they were crazy… they weren’t! They instructed us to send her in Pull-ups and we never went back. (We did continue diapers at night for a few years.)  I believe the school put her on the toilet every two hours and we did as well. It proved that establishing a routine is a crucial learning tool for our children. Our daughter was later than some angels to reach other developmental milestones, but this was one area for which she excelled, and we owe it to her school and our diligence and bravery!
AS Family Member

We have come to accept that our angel will likely not use the toilet in a new or “strange” place. This often happens when traveling. We do worry about her holding urine for longer periods of time. Pushing liquids when traveling is important. Taking her out of her routine does have consequences, and this seems to be one. Eventually, she does adjust to the new surroundings.
AS Family Member


We bought a strap with bells on it that is used for dogs to alert their owners when they need to go outside. We hung it in the bathroom so our angel can ring the bells quickly and easily when she is ready to use the toilet.  We can hear them from across the house and we come running.
AS Family Member

The system that helped us get our angel to learn to stay dry at night was the Rodgers bedwetting alarm training underwear. It had a battery pack sewn into the pants and detachable portion that could alert us at night to get our angel to the toilet when sensors detected wetness and then he would understand what sensation meant it was time to go potty. We would put disposable training pants on over the underwear so we had less mess until he started to get up to go to the toilet himself. These can be used in the day, of course, as well.
Andrea, mcneilak98@gmail.com, angel Tyler, age 18, Del+ Class 1

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Tooth Brushing

Angelman Family Contributions

We wrap our son in a large towel so he’s cocooned inside. It means he can’t hurt us or himself when he’s struggling to stop it.
AS Family Member

Brantley 2 (deletion +) loves brushing his teeth! Since he was smaller I would use a vibrating toothbrush. He’s always so amused with it.
Sarah, j.sorrels09@blueriver.net, angel Brantley, age 2, Del+

Use of a Collis curve toothbrush with which you can brush all three surfaces of the tooth in one motion before biting starts.
Dr. Tony, angel Sarah Nicole 

Brushing your angel’s teeth while in the shower or bath makes life so much easier!

We learned early on that the only way we could brush our angel’s teeth is to wrap her in a blanket. We take our time, and she doesn’t mind it, but those hands get in the way if we don’t “burrito” her.
Sandy, angel Elizabeth, Del+ 

Tooth brushing is a sensory experience that can be overwhelming. Some things that help are: 1) letting my son play with the toothbrush for a minute before using it; 2) giving him a sensory toy to hold while I brush.
AS Family Member

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See P- Photo Books and Blankets

See the Resources & Education section and select Toys from the Category drop down menu, for a list of resources.

See the 2019 Holiday Gift Guide by Amazon.

Angelman Family Contribution

Our son always enjoyed soft or sturdy talking toys and stretchy items, bath toys and also blocks that can be put in and out of containers, like a mailbox shape sorter, or simply Legos and large plastic containers!
Andrea, mcneilak98@gmail.com, angel Tyler, age 18, Del+ Class 1

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See the Resources & Education section and select Travel Destinations or Camps for a list of places that offer special accommodations.

See the Resources & Education section and select Special Needs Safety for a list of resources that can help with travel.

Angelman Family Contributions

Ask for bulkhead seating on airplanes. Helps prevent kicking someone in front!

*** Southwest Airlines is especially accommodating!

When we fly on an airplane, we make sure to have our child with Angelman sit directly behind one of our other children or a parent. That way when he pulls hair, puts his hand through the seat, kicks the seat, it doesn’t affect any other passengers.
Karen, wbk_sd@yahoo.com, angel Paul, age 15, Del+

My angel loves to go.  If I say, “Let’s go!” she is up and getting on her coat. Sometimes travel is difficult, but it’s so worth it to see the look on her face when she gets to see something different and explore her world.  I always keep a bag in my van with extra diapers, pants, shirts, snacks and other necessities.

We always carry a beach blanket that is waterproof when we visit friends and family. We put it on the floor or sofa to protect those areas in case she wets herself.
Prash and Mahendra, angel Lavania

Both my and my husband’s family live a few states away, so travel is part of our life.  Many years we have come home, and I’ve stated, “We are never doing that again!” But with experience, we have gained some wisdom and hopefully some helpful tips. 1. We don’t eat in the car. This may sound counter-intuitive, but when we handed out a snack the fussing for more never ended. Bonus: the car is cleaner upon arrival. 2. We load the iPad with favorite movies and shows and attach this on the seat in front of our daughter. We have three other kids, so we put this where all can see but where our daughter cannot reach it. 3. So, yes, we do the iPad movie thing, but we try to start the trip with no electronics and instead listen to music or play car games. That way we can break out the electronics when things get crazy and kids get cranky. 4. We attach Fun and Function Chewy bite bands above my daughter’s seat on that hanger rack thing. We can then attach her favorite chews and toys to them, so she can easily use them while we drive. 5. We duplicate her home sleeping arrangement wherever we go. We bring a mattress and Privacy Pop and a blanket from home. We’ve had some really hard nights when traveling, and this alone has helped the most.
Sarah, bnamommyisfun@yahoo.com, angel Lily, age 14, Del+

As hard as it can be to travel, the experience will lead to growth for your son or daughter. I have found that long trips, especially, will be followed later by a demonstrated spurt of learning.
Susan, angels Andreas and Yuan

Making the accommodations as similar to home as possible is key when traveling.

When staying at a hotel we ask for an outside room. That way if we do not sleep we are less likely to keep anyone else awake. We are always upfront when making reservations and they try to keep the room on the inside empty too as long as the hotel is not full.

Whether your angel is in a wheelchair or not, we always request a wheelchair and a porter if available at the airport. It makes the security line so much easier and faster. It also frees up a hand or two.

A portable transport chair is beneficial during outings to amusement parks and malls but especially helpful while flying. (Even when your child is ambulatory.)  It is easier to maneuver through airports. Also, airlines let you board early and change your seats to the bulkheads.
Janet and Rick, angel Chloe

We get the bulk seats. It provides extra room so our angel doesn’t feel so confined. We bring along a DVD player, too. Our best vacation was to Disney Orlando our angel loved all the rides!!
Brisia, angel Mario, age 9

A tent is a great way to help travel with an Angel go smoother! We have set one up in hotel rooms, RV’s and sailboats!
Alisa, alisa_giulietti@hotmail.com, angel Nicolas, UBE3A

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