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See the complete list of topics.

Bathing Beds & Bedrooms | Behavior Bikes & Trikes | Body Temperature Regulation 

 

Bathing

Angelman Family Contributions

Do not rush bath time. Be consistent and have a routine…
lather/ rinse, break, shampoo, rinse, break, conditioner, rinse, break.
Breaks aren’t long, maybe 2min. Let them know you are done and
she will need to be out of the tub in 2 minutes.
Norma, Murrieta, CA, angel Katarina, age 20, Del +

 A walk-in shower and shower chair have made bathing so much easier.
Jo Lynn and Jeff, angel Caitlynn, UPD

We recently got a bath seat that holds approximately 250 lbs. I put it in the tub. When my son sits on it, there is a remote that lowers him in the tub. I make it a game and sing going down-down-down! After I wash him, I sing going up-up-up! This makes it easy on your back.
Aina, Fairfield, Ohio, angel Ra’Shawn

Bath time seems to be the highlight of the day! Parents capitalize on this opportunity to take care of a few of the more difficult jobs …like haircutting and nail clipping! Since getting the child OUT of the tub (willingly) is a huge feat, one parent has come up with a highly effective motivator! She warms the bath towel in the dryer for a few minutes, and the child has learned to look forward to that treat after her bath!
AS Family Member

Our angel spent most of bath time swatting at us or trying to lick the tub faucet. We turned bath time into “disco bath time party!” We blast his favorite songs, turn off the lights and turn on a colored light show, and I also throw a couple glow sticks in the tub for good measure. He LOVES it!! He sits there and dances or plays with the glow sticks while I scrub him and wash his hair without a struggle.
AS Family Member, angel age 7, UPD

Our angel has always enjoyed a bath. We find showering too difficult due to balance and safety concerns, but we do practice before camp so that he knows what to expect. We recommend keeping bottles of shampoo, body wash, etc. out of reach and sight as these are tempting! Also have durable bath toys like foam letters, shapes, ducks, etc. As they get older, they can help rub soap and shampoo on, pour water, and dry self.
Andrea, mcneilak98@gmail.com, angel Tyler, age 18, Del+ Class 1

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Beds & Bedrooms, Pajamas, Weighted Blankets

See Resources and select Beds, Pajamas and/or Weighted Products from the category drop down menu. 

Angelman Family Contributions

I wish someone would have told me to transition our son to an enclosed safe bed as soon as he was too big for a crib. No amount of sleep training or sleep meds have resulted in our son easily falling asleep and consistently staying asleep for at least 8 hours a night. Having a safe bed for him means that he can be awake at night and we know that he is safe. It allows the rest of our family to get the much needed rest that they need. Abrams Safety Sleeper is a great travel bed option because our kids’ sleep patterns are really affected by change. For years we didn’t travel because we had no safe place for him to sleep.
AS Family Member

[Our son] went from a crib right to a safe bed at age four.  Insurance wouldn’t cover a safe bed, so my husband built one for him.  We opted for a double bed, which was a great choice because [he] moves around a lot.  Three sides are solid wood and the fourth side is a gate that [he] can see through, we can hold his hand and not be in bed with him.  We can also see him clearly on the video monitor that is mounted to his wall.  [Our son] is 9 years old and loves his bed.  He often goes there during the day if he’s overwhelmed and needs a break.
AS Family Member

My daughter’s room is one of her favorite spaces.  We keep it simply decorated with only a swing and bed/sleeping tent.  She also has a place for all her favorite, safe toys in a small bin. We want her space to be hers, conducive for safe play, good sleep, and afternoon therapy sessions. We have loved the Privacy Pop for our daughter. We can take this with us on trips, as well, so she feels right at home wherever we travel.
Sarah, bnamommyisfun@yahoo.com, angel Lily, age 14, Del+

When my angel was little, we designed her bedroom around her specific needs. Her mattress and box spring were placed directly on the floor so she couldn’t climb under them. We installed a Dutch door with a latch on the outside so she couldn’t wander at night. With the door we could still hear her if she cried, and she could see and hear her sisters and brother in their rooms. Instead of a dresser, we bought a kitchen cabinet and installed it on the wall of her room so she couldn’t dump her clothes on the floor. She had only stuffed animals and soft toys in her room. Any plastic or metal toys were kept in the family room so she couldn’t throw them around and hurt herself or damage anything in the room.
Lori, angel Adrianne

Hang bedroom drapes or curtains with Velcro.  Our son is likely to pull them down, so this makes it easy to put them back up!
John, Travelers Rest, SC, angel Tipton, age 49

Use air mattresses around the bed in the bedroom. It keeps the carpet cleaner and the air mattress can be taken out and hosed off.
John, Travelers Rest, SC, angel Tipton

Margaux sleeps in a made-to-measure sleeping bag (adult sizes available) to avoid access to nappy. www.ptitfilou.com
Estelle, Singapore, angel Margaux, age 14

Invest in water proof mattress pads for all beds in the home and be sure to have several sets of clean sheets and blankets on hand at all times!
Kathleen

Using a baby monitor at night helps alert to seizures or getting sick from reflux.
AS Family Member

My angel has slept through the night since she was seven. We kept her room really bland. All she had in there were her bed and a wardrobe. There were no pictures on the walls. Nothing hanging down, no light shows. We gave her no reason to want to be awake and it’s paid off. I know it’ll seem hard to give your child a ‘dull’ room, but sleep is vital for our angels’ development and your sanity! Keep toys in a different room and you will give him the message that this room is for play, but when he goes to bed, it’s to sleep. Good luck!
Kathryn, angel Darcy

When younger, especially, it helped to put the mattress on box springs directly on the floor in case of rolling out of bed, and putting soft cushiony items around the bed. We also learned to only put minimal décor in the room (baby proof for life??)! We used baby monitors for a long time! We let our son chew a cloth to settle in. We close his door so that we can hear if he leaves his room when he opens the door.
Andrea, mcneilak98@gmail.com, angel Tyler, age 18, Del+ Class 1

The Safety Sleeper by Abrams Nation has been a lifesaver for us when traveling and in emergency situations. Paul loves the enclosed feeling and after trying another brand, this one holds up to the strength of our son. It is so well made and comes in its own suitcase (which is not charged as luggage when flying. We say it is a medically necessity).
Karen, wbk_sd@yahoo.com, angel Paul, age 15, Del+

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Behavior

The Angelman syndrome Behaviors Informational Series is available to help those who care for or work with individuals with AS explore the possible root causes of challenging and aggressive behaviors and identify possible solutions.

Angelman Family Contributions

Distraction is our best trick for preventing our daughter’s screaming or arching of her back. The word help is magical …. “Elena please help me with ____.”  This must be said before the disruptive behavior begins. For example, Elena always seems to scream or arch her back when going from her room to the kitchen, or from the family room to the garage. If I say, before going down, “Please Elena could you help me carry this?” she feels useful and no disruptive behavior appears.
Maria, Madrid, Spain, angel Elena, age 35

My son’s non-compliant behavior used to frustrate me greatly. Now I give him more time to respond to my requests and it has made a big difference. When I ask him to come to the table, get out of bed, get dressed etc. and he does not respond, I walk away and ask him again in a few minutes. I may have to do this a few times, but eventually he responds and does what I ask of him. 
Inge ingediehl@hotmail.com, angel Marcus, age 34, Del+

Be very careful about over stimulation!  Too much noise, too many people, too many toys out at once, etc. My angel gets over-stimulated with too much of just about anything. This causes behavioral issues for us.
Elise

Emotional reactions to challenging behaviors can be very reinforcing. In our experience, keeping cool and minimizing engagement – including eye contact, physical contact, and talking – during challenging episodes really helps.
AS Family Member

Using a weighted blanket has helped the child I work with relax and become calm when upset.
Ann

Our angel just gets absolutely wild sometimes – pulling things off the shelf, throwing things, and pushing and hitting. I have found that holding her really tight from behind and whispering to her or singing in a very soft slow tone will calm her. It is like pushing a reset button! It usually takes a minute or two of this to completely calm her and she is resistant at first!
Elise

Through the years, we have learned that it is best to be patient and allow a few quiet moments for our angel to respond to directions and process the information. This is especially true when using the restroom, moving from one place to another, beginning to eat breakfast, etc.
AS Family Member

ABA therapy has helped our son’s behavior greatly, as well as having a Board Certified Behavior Analyst involved in all aspects of our son’s care. Our kids use their behavior to communicate. Our BCBA helps us figure out what our son is trying to tell us with his behavior. Our son’s behaviors have gotten more intense as he has gotten older. I have found that people who are trained and want to work with individuals who have challenging behaviors are the only ones that end up staying with us for the long haul.
AS Family Member

Let your angel know it hurts when they pull your hair.  Let bystanders, friends, family know she pulls hair and dangling things. Reinforce that it’s not appropriate.
Norma, Murrieta, CA, angel Katarina, age 20, Del +

Keep in mind that much of the “behaviors” are the result of anxiety, frustration, lack of sleep, illness, etc.  Certainly, our angels suffer “fight or flight” at times and this can be traumatic for all. The harder, but more effective strategy, is to whisper reassurance, let them know that everything will soon be OK and that you are there. Patience is the key- even in public when things might become embarrassing.  (Most people will be sympathetic.) Remember…“This too will pass.”  It will take a while – and longer than you want – for your child to calm down.  He/she might lash out at loved ones with slapping or hitting.  Do not take it personally! It is often beyond their control. As much as we try, we cannot imagine what it is like to have Angelman syndrome. NOT resorting to physical discipline or screaming (which increases aggression and frustration) will, in the long run, help you as a parent feel better about yourself as a parent and will deepen your child’s trust in you. As Dr. Phil says, “Children need a safe place to land” and you can create that by using comfort rather than anger.
Alice, sandiegoasfwalk@gmail.com, San Diego, CA, angel Whitney, age 38, Del+ Class 1

Due to the fact that most children with AS do not speak you should start ABA at an early age. “ABA” is Applied Behavior Analysis. They come to your home or you can take your child to a clinic to get these services. It is a fantastic service that really will give your child a better way to communicate, interact appropriately with peers and family and so much more. It has made a huge difference in my son’s life. We have been doing it for 6 years now.
Duane, angel Aiden, age 12, Del+

When my son gets really worked up and cannot be soothed, we try to change the activity or environment so that he can regulate his behavior and emotions before we go back to resolving the issue (if it needs resolved). One way that we help him to focus on something other than what has upset him, is to have him run his hands under lukewarm/cold water. Helps dry up tears quickly! We use this method a lot for boo-boos.
Desiree, desireemartika@yahoo.com, angel Titus, age 3, Del+

I have found that the unusual laughing associated with my son’s Angelman syndrome is directly related to his need to use the restroom. It’s almost a form of communication or nervousness. Once he has used the restroom, the laughing stops.
Nancy, Lebanon, Ohio, angel Paul, age 29

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Bikes and Trikes

See Resources and select Tricycles/Special Wheelchairs from the category drop down menu. 

Angelman Family Contributions

My son rides an adult Rifton trike. He loves it! It is great exercise!
AS Family Member

Helping our Angels ride a bike safely can be a real challenge. We tried a three wheel adult sized trike but our son would turn off the sidewalk and ride right into the street, even with Mom or Dad riding (or running) alongside. Scratch that. So next we tried a tandem with our son riding on the back. Balancing the bike with a wiggling and wobbling child on the back was waaaaay too dangerous! Scratch that. Then we found the Rhoades Car Quadricycle. Four wheels, low to the ground, two chair like seats with backs sitting side-by-side (with option to add two rear passenger seats which sister and the neighbor kids loved), both front passengers have pedals but only one with the handlebars to control the steering! Finally, a safe option that allowed our family to bike together safely AND allowed our son to pedal and get much needed physical activity. His sister and her friends loved it, too! And we won the best decorated bike in the neighborhood parade 2 years in a row! More information can be found on their webpage at rhoadescar.com
Elaine, MARTINEK55@YAHOO.COM, angel Paul Deceased at age 32 in 2010, Del+

We bought a standard toddler trike (the ones that have a harness and can be found at Target) for our two year-old grandson. He couldn’t push the pedals, so we used a cable to tie a pair of sandals to the pedals. We strap his feet in his sandals and away we go pushing him! It has improved his leg muscles and he loves going for rides.
Dimity

[Our son] started riding an adapted tricycle until his legs got stronger. By age 6 he was riding a regular bike with training wheels that his brother passed down to him. To help [him] feel comfortably balanced on the bike with training wheels, we bought a wide adult bike seat from Wal-Mart and put it on his bike.  His whole bottom end fits on the seat and he feels balanced on his bike.
AS Family Member

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Body Temperature Regulation

Individuals with Angelman syndrome have poor body temperature regulation and increased sensitivity to heat.

This abstract appeared in an international 2008 PubMed article:
An 8-month-old girl and a 20-month-old boy with Angelman syndrome and long-standing fever are presented. Despite extensive clinical and laboratory examinations, no inflammatory or infectious origin for the fever was found. It was considered that the long-standing fever observed in these cases was due to hypothalamic dysfunction for thermoregulation.

 Angelman Family Contributions

Several years ago, our son David had a sore throat and would not eat or drink. This was behavior he had exhibited in earlier bouts with sore throats, so we weren’t too concerned. He also didn’t seem really sick and to our touch his body didn’t seem too warm. To our horror, as he was sitting at the dinner table, he collapsed. We rushed him to the emergency room to find that he was running a temperature of 108 degrees. Due to the wonderful doctors and care he was given, he survived; but he ended up in the hospital for five weeks. The doctors told us that there was a problem with his “temperature regulator” and consequently he could spike a seriously high fever very quickly.
Fred and Carolyn

Last summer my husband bought my daughter a personal fan/mister.  We took this everywhere, so that we could still do all the things we love outside…going to the beach, going on walks, spending an afternoon at the zoo. She thought the fan was funny, so we got to hear her great laugh, as well as keep her cool.
Sarah, bnamommyisfun@yahoo.com, angel Lily, age 14, Del+

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