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See the complete list of topics.


Education/School | EEG | Entertainment | Epilepsy | Exercise | Eye Issues

 

Education / School

Public school districts are not always funded adequately to provide the support services that each child needs; therefore, you must be an advocate for your child.  Contact your state advocacy agency and ask them to come with you to IEP meetings.  Take family and other parents of children with disabilities in your area to meetings for support.  Never go alone to an IEP meeting because it can be a very emotional process and can often become overwhelming. When emotions are high you miss information that someone else could catch.  The squeaky wheel gets the grease! Don’t sign an IEP until the best interest of your child is met.  When school districts say (and they will) that your child doesn’t qualify for therapies, services, or special considerations; you need to remember that sometimes your child really does qualify. The school district just doesn’t always have the means to make it happen.
Anne Loveless

Physical Education is a federal requirement in the USA.  Remember that your child is entitled to an appropriate physical education program that is adapted to his needs.  If that means the school district has to create an adaptive PE class, then so be it.  Angels LOVE to be with people. Having them in a normal education class is good for social interaction and could be part of their physical education requirement. Make sure to talk to your child’s PE teacher and see what adaptations are in place. If they are unable to be in a regular PE class, then make sure they are getting adaptive PE as weight gain is common in older children and adults.
Anne Loveless

Make up a simple pamphlet for classmates to take home to describe your child and Angelman Syndrome.  This allows other parents to help their children understand A.S. The parents can then explain to their children how to play with your child.  This helps your child integrate with their peers.
Jim and Deb Stadnyk  angel Justin,  age 13

Early intervention is the best tip in all categories.  However, school or adult daycare is where the work is done. Home is where you relax.  You need to reinforce what is being done at school, but home is where you love, rest and play.
Robin Titus

We have a great school district for special education. Our daughter has always been in a self-contained class because we felt it was the best way for her needs to be met. The ratio is nearly 1:1.
Sandy Blagg  Grayson, Georgia,  angel Elizabeth, age 13   Del+

The most important thing is to believe in your son or daughter’s abilities, even when they are hard to discover.  Assume your child can learn because then you will present him with opportunities.
Susan Yuan Jericho, Vermont angel Andreas Yuan, age 40

We went to the Institutes in Philadelphia to help our son in 1984.  He is now 36 yo and we are convinced that their program helped him immensely.  We did the intelligence program faithfully and even have leftover bit cards to give to anyone in the Asheville, NC area.
Susan Pike

As an educator and the mother of an adult angel, I have come to the conclusion that standard developmental assessments used with our angels shed very little light on their true abilities and the results have superficial value. For example, most of the assessments use toys.  I believe that my angel, for example, doesn’t always see a toy as representative of real items and likely doesn’t often think abstractly.  That might be why she doesn’t enjoy cartoons. Toys to her are just something to manipulate. I hope that scientists and educators can one day tap into the authentic thinking of angels and discover better strategies to develop cognitive skills.  Perhaps iPads should be used!
Alice Evans  San Diego, CA  angel Whitney, age 33

This is a link to educational resources from the ASF website.
http://www.angelman.org/resources-education/resources/educational-resources/

http://www.wrightslaw.com/

Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

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EEG

It’s really important to know that people with AS have odd-looking EEG’s. They may look like status epilepticus to a neurologist who is not familiar with Angelman Syndrome. Make sure the neurologist who reads the EEG looks at an Angelman Syndrome website.
Christine and Giovanni Rompato Logan Utah  angel Chiara,  age 5

Normal EEG

normal EEG

Angelman Syndrome EEG showing typical posterior notched delta activity

AS EEG

Link to ASF website: Epilepsy and Treatment for Providers
http://www.angelman.org/resources-education/medical-info/epilepsy-and-its-treatment-for-providers/

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Entertainment

Some of Juliana’s favorites forms of entertainment are: swimming and water parks; bowling (with a ramp); using a NABI tablet; going to movies (she wears headphones because surround sound is way too loud); watching TV (She still likes Barney, Disney, musicals; or any show with children); putting together puzzles; looking at family photo albums; and going out to eat at a restaurant.  She participates in a theater/arts program for special needs individuals. It ends with a play performance on stage. Juliana enjoys going to church group meetings.  She likes concerts and theater stage shows. Juliana goes away to an overnight camp for a week during the summer. She also likes camping. She loves amusement park rides like the carousel, bumper cars, etc…
Kathy Eichost  Fort Wayne, Indiana  angel Juliana, age 28  (UPD)

My son is fourteen and he loves Monster trucks, Mudd Bogs, Nascar racing and motorcycles.  We have Directv and he has learned to access the “extras” so he can bring up You-tube to watch these activities on TV.  We have a motorcycle with a sidecar just for him. We just treat him like any other kid and “go for it”.
Yvette Houseman

Great Adventures in Jackson, NJ is accessible.
Carol Montgomery

My daughter loves to go to movies or watch movies.  She also loves to look at magazines.

Our Angel loves music! He uses studio headphones (the bigger ones) with a small iPod attached.  This provides portable entertainment. He also enjoys watching sports with his dad while listening to music, so we often combine the two. A sensory specialist once described our Angel as needing “high input,” so now I don’t feel guilty when he’s doing a couple of things at once.
Jeanne Seltzer

My angel absolutely LOVES any event that includes music, people, and/or water! We are regulars at the free concerts series in the summer as well as any parade or other event that we hear about in town.  Water parks/Splash parks are also a hit!
Kelly

We like going to outdoor festivals and concerts when the weather is good. She likes watching the people and it’s loud, so nobody seems to care if she’s making noise. She also likes sporting events. We go to (minor league) baseball games with her and she enjoys the Jumbotron screen.
Sandy Blagg? Grayson, Georgia, angel Elizabeth, age 13   Del+

Our angels love playdoh, puzzles and ipods.
Melissa Jones  Cortland, Ohio  angels:  Andre, age 15, Christina age 14, Ryan age 13 and Ashley age 12.

Melissa, you are our inspiration!  Melissa and the angels’ father also have two other typical children.

Nicola loves her Tablet to view Youtube! Nicola also loves to be in a group at day class where they have singing groups She has no speech but she loves the group!
Noel and Jacquline Wylie Londonderry Northern Ireland  angel Nicola Wylie, age 25

Save biscuit wrappers, any kind of glossy paper, and window envelopes. These can keep my angel occupied for hours!
Betty Abraham

Ryan likes any movies with animals and lots of action!
Cheryl Schadt  West Peoria, IL  angel Ryan,  age 20 Del. +

My son loves any type of toy that has buttons to push and toys that make music or any type of sounds.
Karen Murta

Hands down my angel’s favorite entertainment is television and video programs featuring brightly colored characters, animation or live action, and singing and dancing. Physical comedy, like Tom and Jerry makes him crack up for hours!  He also enjoys watching silly animal videos, or people falling down on YouTube.
Terri Spielman

Lawrence Welk on UNC TV on Saturday nights had been a big hit for our twenty year-old son for seventeen years!
Daniele Hill  Smithfield, NC  angel Frank, age 20

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Epilepsy (see Seizures)

Exercise

I have found a special needs dance class for our angel that she loves! I go in to help her and we are both having fun. She really seems to like being part of the group.
Sandy Blagg?  Grayson, Georgia, angel Elizabeth, age 13   Del+

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 

Although our priority is safety and keeping our angel from falling, if we do not keep her legs moving, she tends to lose function. I make Kaede walk up to three miles at a time. Also, I make sure that she has IEP goals for the treadmill at school. The first school she attended did not have a treadmill, so I found funding and got one for the school.
Jennifer Moss  angel Kaede

Exercise is important for your child’s health.  Go for walks even if it is only to the end of the driveway.  Take them to the park to get fresh air. There are many leagues that provide activities for special needs.  Some typical leagues will accept special needs children and provide buddies.  Call your local city government and check into their recreation leagues.  Schools may also mentor your child in the various activities.
Donna Manhart Rowlett, TX  angel Douglas Joseph Manhart, age 25

Daily exercise such as walking helps aid in sleeping at night.  We have found that walking at least a mile each day will make our Angel ready for bed.
Lisa Koch

Swimming works really well.
Fredrik Nilsson

I have used my sewing and crafting skills to make my son equipment that would otherwise cost a fortune. He doesn’t walk himself, so equipment is always important for keeping him active. I’m currently working on a Johnny Jumper by sewing the support harness myself, adding buckles and straps I found online, and using springs from the hardware store. We will attach several pairs of eye hooks to the studs in our ceiling in various rooms and use clips to attach the jumper so Jack can exercise while we’re working in different areas of the apartment.
Melissa Shipee  Mansfield Center, CT   angel Jack,  age 8

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Eye Issues

Our 35 year-old son had surgery at age twelve months to correct a lazy eye.  It has since returned, but not as bad as it was before.
Susan Pike

First, I want to be clear that there is no evidence linking the development of pterygiums on the corneas of the eyes and Angelman Syndrome. But, as a mother, I have a strong suspicion that some angels could be more susceptible. (My unscientific/no medical training concern is with the hypopigmentation feature found in some AS individuals with large deletions.  At a very early age, our daughter would go to great lengths to flip around in her stroller and avoid the sun and I believe she had extreme sun sensitivity.)   Anyway…
Our daughter developed pterygiums in her early 20’s. Pterygiums are membranes or “blisters” that grow on the cornea of the eye. People living in sunny, dry climates are especially susceptible, but people anywhere can develop them. Pterygiums begin growing in the corners of the eye and can spread across if left untreated. Our older daughter first noticed the pterygiums on our angel’s eyes (we never did) so you might want to ask your angel’s doctor to watch for them. Unfortunately, for our angel, scar tissue formed after surgeries to remove the pterygiums on her eyes, and this necessitated a corneal transplant to restore her eyesight.

One year later the pterygiums returned. We were convinced her Angelman Syndrome was responsible.  Research led us to believe that she has Ocular Albinism Type 2.

If your child has been diagnosed with a large deletion, I highly recommend that eye exams be performed regularly as pterygiums and other eye issues can be difficult to detect.
Please read these additional articles as they are very informative!

Please contact me should this problem ever be discovered with your angel!  See Surgical Procedures for details of her successful corneal transplants!
Alice and Mark Evans  San Diego, CA  angel Whitney, age 33

Mario Andrés was born with strabismus so he had eye surgery when he was three years old. We think that helped him with the walking process since he could focus better and walk more steadily.
Brisia Barba  Chihuahua, México, angel Mario, age 9

This link is to the National Organization for Rare Disorders (NORD) website: Angelman Syndrome
http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/411/viewFullReport

The lack of melanin in the eye may cause sensitivity to light (photophobia), rapid, involuntary eye movements (nystagmus) and decreased clarity of vision (visual acuity). Some individuals may develop abnormal protrusion of the cornea (keratoconus).

Hypopigmentation
http://www.peds.ufl.edu/divisions/genetics/programs/angelman_syndrome/AS_five_decades.swf

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