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See the complete list of topics.


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

 

Testing

Diagnostic Testing for AS

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Therapies

Try a therapy for at least six months.  Implement it at home.  Make changes in techniques if they are not working and don’t be afraid to change therapists if you are not satisfied with the results.
Donna Manhart Rowlett, TX  angel Douglas Joseph Manhart, age 25

Dolphin Therapy is extremely motivating to A.S. children and enjoyable too!
Michelle Sclater Jefferson MD. Jake 11, del +

The Anat Baniel method involves slow movement connecting the brain to the body.  They have a website.  We have really seen the most progress in Sadie’s movements from this method.

Kevin enjoys his horseback riding therapy. He seems very adept to the motion of riding a horse. He knows his routines well and gets excited when we arrived at the riding place. It does takes some distracting Kevin at times when the horse is still in warming up and Kevin is already excited about getting on with the lesson. He rides with site walkers, but without any assistive equipment. He holds his reins by himself. Since his side walkers are volunteers and often change, I make sure to inform them about Kevin’s habit of pulling long hair and his occasional pinches.
Andy Goldberg

Sensory integration therapy and related activities have been extremely necessary for our child as a means to regulate his nervous system. Sensory activities which have worked include: swinging; wearing a body sock; and playing with clay, silly putty, shaving cream, lotion, or similar items.  Other activities include: finger painting; playing in water; playing at a sensory table; swimming; throwing balls or rocks; walking; getting deep pressure or light touch; sitting in a bean bag; eating cold or crunchy food; listening to music; using a vibrating toothbrush or jiggler; using noise canceling headphones; etc… The more therapies that your child has at an early age the better they will do. If the therapist isn’t working out, ask for another until you feel the therapist and child have a common goal and are working to meet it.
Jeff and Nikki Mars  Peru, New York  angel Aiden, age 7

Jason loves aquatic therapy, but tries to drink the water.  He loves music therapy, and hippo therapy, but tries to take off the helmet. He can’t tolerate anything on his head.  He cooperates with physical and occupational therapy and understands verbal direction.
Carol Montgomery

Horseback riding and swimming, out of all the OT/PT/ST we tried, are “the bomb”!  They work best.
Elle Nova

Kathryn’s favorite physical activity is Equine Therapy.  It really helps with balance and the stiffness in her legs.
Bill and Paula Benton  Van Alstyne, Texas  angel Kathryn, age 31 

This is the link to the ASF Therapy Resources site:
http://www.angelman.org/resources-education/resources/therapy-resources/

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Toileting

We started toilet training my son when he was 3 against the advice of his doctor. My son is five now and is consistently gesturing to me that he has to go. He is not trained yet, but at least he is letting me know he has to go consistently. We take him even if he does not let us know he had to go, so maybe he has made the association. He went backwards for a while, but I am praying that he continues to go forward.
Danielle Wynn

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 Benton  Van Alstyne, Texas  angel Kathryn, age 31 

DDAVP (for bedwetting) has been a great quality of life changer for all of us.  Juliana had been toilet trained during the day, but continued nightly bedwetting for twenty-one years.  Once the doctor found the right amount of DDAVP, our daughter is dry every night. There are now no more bed sheet changing, mattress protectors, adult diapers, bad smells and wetness. It is such a quality of life changer for her to wake up dry and she is now able to spend the night in a hotel bed.
Kathy Eichost  Fort Wayne, Indiana  angel Juliana, age 28  UPD

Toilet training may take a long time but if you are patient it is well worth it.    We started when my son (del +) when he 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! At twenty-one years of age 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 Thompson Ottawa  Canada  angel Trent, age 22

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.
Maria Leon Guerrero

Make sounds and facial grimacing like you are pushing or grunting while your child is on the toilet.  Our children like to imitate and will likely try to do the same.
Jim and Deb Stadnyk  angel Justin,  age 13

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

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 training pants (before the days of Pull-ups) and we never went back.  (We did continue diapers at night for a few years.)  I believe they 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. Whitney 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!
Alice and Mark Evans  San Diego, CA  angel Whitney, age 33

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

We found that our granddaughter was afraid when we helped her sit on the toilet.  To help her to feel more secure, I installed a pair of handrails on the walls of the bathroom.  After that, our granddaughter felt and feels more secure when she sits on the toilet.
Patrick P. Fasang

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Tooth Brushing

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 Szyndlar  Port Huron, MI  angel Sarah Nicole, age 31

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

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 Blagg?  Grayson, Georgia, angel Elizabeth, age 13   Del+ 

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Toys

My little guy loves music! However, most toys have very loud options only. My angel wants to feel the vibration of the sound against his cheek as well as see the lights. I have taken thin foam and placed it inside the toy over the speaker. This isn’t easy because I have to figure out how to take it apart. Plus, it only works for things that can be put back together. This has muffled the sound and it’s not nearly as loud which is really important to protect his hearing.
Jennifer

My angels love puzzles, iPods and playdoh.
Melissa Jones  Cortland, Ohio  angels:  Andre, age 15, Christina age 14, Ryan age 13 and Ashley age 12.
Melissa, you are our inspiration!

Magformers
Magformers are super-powerful magnetic toys that take children (and adults alike!) to a world of limitless imagination and creativity. Magformers are made of different shapes with magnetic sides. Magformers pieces always connect and never reject! *** They are advertised as a tool for brain development. They are pricey but a perfect toy for angels!!
Can be found in most toy stores.

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Travel

Per the advice of the neurologist, we increase his seizure medication one day before and after a long travel day. We also give him 1/2 dose of Ativan to calm him during travel and reduce the occurrence of seizures.
Michelle Sclater Jefferson MD. Jake 11, del +

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

We bought a travel bed tent and an air mattress for a safe place for our six year-old Angel to sleep. Ready, Set, Bloom is the brand name. We try to keep to the routine as much as possible, but also tire her out so she will sleep well.
Leah Boice Ellington, CT  angel Emily, age 7 (Del +)

Our angel loves to travel, but nights can be hard. We use a Nikel Bed Tent for that. It fits a twin-sized air mattress inside and gives her a place that is “hers” so that she is safe and happy. Staying at a Disney resort is great if your angel is in a wheelchair. They will pick you up at the airport in a wheelchair accessible bus. All the shuttles to and from all the parks and downtown Disney are accessible for wheelchairs. Just inform your travel agent or Disney of the assistance needed. They have roll in showers too.
Athena Jiminez Greenfield, Wisconsin   angel Resendez, age 14  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 its 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.
Anne Loveless

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 Naidoo   Reading, PA  angel Lavania,  age 22

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 Yuan  Jericho, Vermont  angel Andreas Yuan, age 40

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

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.
Becky Worth

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.
Robin Titus

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 Sutphin  Olathe, Kansas  angel Chloe, age 14

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 Barba  Chihuahua, México, angel Mario, age 9

When traveling with my child on the airplane, I request bulkhead seating. That way the child has no seat in front of them to grab people and there is more room for seating. It is right behind first class so it’s also easier and closer for those who are in a wheelchair.
Corbin Thompson  Tacoma WA  angel Tyler Thompson, age 27

*** We have found that Southwest Airlines and Alaska Airlines are very accommodating and will make every effort to put you in the bulkheads at no extra charge.  Just speak to the agent at the gate.
Alice Evans  San Diego, CA angel Whitney, age 33

I have DVD monitors attached to both headrest of our van so he can watch DVD’s while traveling. You can purchase them and they’re not that expensive.
Aina Abdullah  Fairfield, Ohio  angel Ra’Shawn Jarrett, Jr., age 21

This is a link to the ASF website. Links are provided for travel resources.
http://www.angelman.org/resources-education/resources/travel-resources/

Give Kids the World is a 70 acre non-profit “storybook” resort in Central Florida where children with life-threatening illnesses and their families are treated to weeklong cost-free fantasy vacations.

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