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

 

Bathing

A walk-in shower and shower chair have made bathing so much easier.
Jo Lynn and Jeff Cooper  angel Caitlynn, age 14 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 Abdullah  Fairfield, Ohio  angel Ra’Shawn Jarrett, Jr., age 21

The Following appeared in the 1999 edition, Angelman Syndrome from A to Z.
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!

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Beds and Bedrooms

I just purchased a Ready, Set, Bloom bed tent for my daughter. It is very lightweight and a twin size air mattress fits inside. It is very cheap compared to other safety beds out there ($159). I am looking forward to being able to travel with my angel.
Mandee Perez

A few years ago we decided to change our angel’s bedroom door to a Dutch door.  It has been an absolute lifesaver.  We put the lock on the outside of the door so he (so far) hasn’t figured out how to open it.  Now, he is always safe in his room. It’s a very nice piece of mind!
Rene and Tom Smith  Templeton, CA  angel Cody, age 8 Del. + 

We had a local craftsman build Elizabeth a safe bed, so we can all sleep at night. We also had him build gates to separate the living room from the dining room and kitchen. Our living room is angel-safe with no table lamps, trinkets, etc… She can play in there without constant supervision, which is nice for her and us!
Sandy Blagg?  Grayson, Georgia, angel Elizabeth, age 13   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 Hill  angel Adrianne

Make a bed with plexiglass sides so your child can see out. A piano hinge can be used to swing the sides down to open.
Carol Montgomery

We put “peep” holes in our daughter’s bedroom door so we do not have to open it to check on her.  She likes to sleep with the TV on, so we cut a hole in her cupboard door and covered it with plexiglass so she can watch TV and be safe.

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 Lippard  Travelers Rest, SC  angel Tipton Charles,  age 43

Build a low bed frame on the bedroom floor.  Then, the bed is easy to crawl into and safe in case the child falls out.
John Lippard  Travelers Rest, SC  angel Tipton Charles,  age 43

Cover bedroom windows with plexiglass and use a half door for the bedroom.
John Lippard  Travelers Rest, SC  angel Tipton Charles,  age 43

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 Lippard  Travelers Rest, SC  angel Tipton Charles,  age 43

After your child grows out of a crib, look into a bed that will keep your angel safe. An adaptive bed will help you sleep and keep your child safe. We used a bunk bed and then created doors on the front to keep her in and safe. It allowed us to sleep better.
Mindy McBride

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

Margaux sleeps in a made-to-measure sleeping bag (adult sizes available) to avoid access to nappy. www.ptitfilou.com
Estelle Tilly  Singapore  angel Margaux, age 9

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 Manke

My angel is thirteen and 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. Now, her room is full of sensory toys, a ball pool, and a TV, but her body has been programmed to sleep through. I know it’ll seem hard to give your child a ‘dull’ room, but sleep is vital for his 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 Wrigley  Northhampton  UK  angel Darcy, age 13

http://www.thesafetysleeper.com
A safe, fully enclosed and portable bed system for children and adults with special needs.

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Behavior

Additional information can be found at the ASF Behaviors Informational Series.

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 Galan  Madrid Spain  angel Elena Palomares , age 30

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 Rice

Behaviors are most often an attempt to communicate a need, want, or feeling. Take a minute to stop and ask yourself,  “What is my child trying to communicate?”  Also, remember that even though our Angels are “special”, sometimes their behavior is not. For example, throwing a temper tantrum because they are not getting what they want can be an age appropriate behavior. It does not always have to do with their special needs.
Maria Sayre

If my thirty-five year-old child doesn’t want to do something, there is no need to try and make him do it.  You can’t.  He will become abusive and refuse to do it.

The use of backward counting (for example, from 20 to 0 or 10 to 0) is a way of giving structure to any activity that involves waiting and can prevent negative behaviors. Examples could include: brushing teeth, going on the potty, waiting for breakfast to be ready, etc. Counting backwards is better than forwards because the endpoint (zero) is always clear.

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.

With my Payden, age 5, I find the easiest way to manage behaviors is to shut them down immediately. Many care providers try to ignore negative behavior, but I’ve noticed that with Payden ignoring doesn’t stop the behavior.  She responds better when we demonstrate the better way to do it afterwards.  For example, Payden can whine, cry and throw her body because she would like to have a treat she has seen. Rather than ignoring her and waiting for the behavior to stop, we interject by saying “No, that’s not how we ask. Would you like some? Ask me for food.” Then, we guide her hand to her mouth (Payden communicates with modified ASL). We find this stops the behavior and brings her back to focus.  Sometimes this requires repeated modeling.
Cassie Martin, Payden’s support worker  Riverview, New Brunswick Canada  angel Payden, age 6 

When my angel does not want to do what I ask him to do, for example:  Come here so I can brush your teeth; Get off the toilet; Step into the shower; Get off the couch; etc., I distract him by singing a silly song or dangle a favorite toy in front of him. That usually gets him moving!
Inge Diehl

Spend time observing the behavior to determine the antecedent.  Seek professional help from a BCBA to develop a plan to reduce the behavior.  If the behavior is negative to the family, it is important to stick to the plan at least six months.
Donna Manhart Rowlett, TX angel Douglas Joseph, age 25

Don’t just try to “modify” the behavior.  Figure out what is underneath it and deal with that.  Difficult behavior comes out of strong feelings.  These feelings must be acknowledged and dealt with before you can do any more than squash the behavior down.
Susan Yuan   Jericho, Vermont  angel  Andreas Yuan, age 40

Our daughter is thirty-two years old.  Some of her behaviors have escalated as she has gotten older.  Since she can’t communicate well, we are often frustrated trying to determine whether she is in pain or something else is bothering her. We have found that if her behaviors are off the top, then there is definitely something serious going on. It’s usually a matter of elimination. In some cases, we have found that the meds she has been on for her behaviors have been causing her to have more behaviors! After a team meeting with her doctor and other staff, we decided to start weaning her off some of the medications.  Within a couple of weeks she was so much better. We believe some of the meds were causing her adverse reactions.
Linda Cox

We started giving Jack time-outs for unacceptable behavior a couple years ago, and though we didn’t expect much, he is incredibly responsive to them and changes his behavior most of the time afterwards.
Melissa Shipee Mansfield Center, CT  angel Jack, age 8

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

It took me too many years to learn this!  When my adult angel returns from her day program and is VERY excited to see me, I wait and let HER initiate a hug when she is ready.  I also speak to her in a quiet, calm voice rather than contribute to the over-excitability!
Alice Evans San Diego, CA  angel Whitney, age 33

Here are some behaviors we really worried about in the beginning.  First, our daughter would often fall asleep at the dinner table and then wake up suddenly, shaking. We thought this was a seizure and then it turned out to be a very strong startle reflex. Second, when she had a fever, she would do the same thing, start to go to sleep and then startle.
Christine and Giovanni Rompato Logan, Utah  angel Chiara,  age 5

Schools have tended to equate Kaede’s aggressive behaviors to lack of good communication skills. I also suspect that behaviors can be neurological as well. I do not let all the goals written for her behaviors be linked to her communication needs. Hitting, biting and hair pulling are never allowed and she has been redirected to better forms of getting someone’s attention, such as tapping on the shoulder or forearm. Each IEP has reflected this. When our angels are young, they need these behaviors to be addressed thoroughly and not just tied to a communication goal.
Jennifer Moss

Our Angel has lots of behaviors, most in connection with communication frustration.  We have a Behavioral Therapist that works with him, and she stresses consistency and accountability.  We do redirection and prevention as much as possible by trying to anticipate situations that are known to trigger bad behaviors.  When he is stressed, he will hit, kick, bite, cry, pinch, and flop to the floor.  This is very problematic in public.  We have had good success with edible reinforcements.
Terri Spielman

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 Rice

Behavior is the one thing we battle the most. Our son has good periods of concentration and quiet moments, but when he can’t control himself, we walk along with him and that helps him relax. He won’t respond to “No”.  Sometimes he hits his head against the wall, so we try to focus his attention on something else like a game or a ball or some food.
Brisia Barba  Chihuahua, México, angel Mario, age 9

For self-injurious behavior (fingernail peeling/ picking), try giving your angel a whiffle ball covered with stickers to peel during those stressful/anxious periods.

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.
Alice and Mark Evans  San Diego, CA  angel Whitney, age 33

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Bikes and Trikes

A tandem attachable bike worked very well to allow our son to go on family bike trips.  It is sold at bike stores and attaches easily to a regular bike.  It helps improve balance.
Jim and Deb Stadnyk  angel Justin,  age 13

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 Moore

TRIAID is an innovative manufacturer and supplier of special needs equipment for children. http://www.triaid.com/index.html

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Body Temperature Regulation

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

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

Fred and Carolyn Windbeck shared the following experience:
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

This abstract appeared in an international 2008 PubMed article.
An 8-month-old girl and a 20-month-old boy with motor and developmental delay and long-standing fever are presented. The Angelman Syndrome patients were diagnosed with fluorescence in situ hybridization (FISH) analysis. 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.

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