I cut my twenty year-old son’s hair and it is fun. My tip to avoid hair getting all over is to put a slick windbreaker jacket on backwards with the snaps or zipper in back. The hair easily falls off. Then I put baby powder on Frank’s skin to help the hair brush off. Also use the baby powder after a walk on the beach for legs, hands, and feet to help the sand fall right off.
Daniele Hill Smithfield, NC angel Frank, age 20
***Appeared in the 1999 edition, Angelman Syndrome from A to Z.
I stand my son in front of the bathroom sink – filled with water, of course – and he becomes so distracted splashing and playing that if she works fast, he barely notices that she is trimming his hair. Many parents have also found that cutting during bath time makes the job easier.
I have a “three step hair cutting plan”: 1) Put the “torture” chair in front of the TV and play a favorite video; 2) Keep a stock of favorite snacks on hand. Food is the great distracter; and 3) If all else fails, get a sibling to entertain your child! This doesn’t make the process easy… just easier!
My angel, Fayth (age 16 del +) has severe mood swings and has taken to pulling her sister’s hair when upset. When she does this we say, “NO” and put her in time out. She does this when tensions are high in her environment; when she is tired or frustrated; or when she seems jealous or upset by someone’s behavior. She seems to be seeking attention or trying to get her way when she does this, so for us removing her from whatever the situation is allows her to calm down. Then, we come back and ask for appropriate attention in ways that are acceptable. She has now started to remove herself from the room if she is getting angry or upset and she goes to sit in her room and play or take a rest.
Hair pulling can be a problem. In my experience, it is a means of attention getting. The best way to handle it is to ignore it (just remove their hand from your hair) and then reinforce positive attention getting.
Rachel Brewer N. Little Rock, AK angel Ava, age 4
Tickle your angel for a quick release! This is a quick and effective technique when your angel is grasping someone’s hair in public!
Alice Evans San Diego, CA angel Whitney, age 33
Dr. Harry Angelman was an English physician who identified what is now known as Angelman Syndrome. Dr. Angelman was born in Birkenhead, England. He was an enthusiast for the language and country of Italy. He first observed three children who were unrelated but showed similar symptoms of severe intellectual delay, stiff, jerky gait, lack of speech, seizures, motor disorders and happy demeanors. Then, while vacationing in Italy, he observed an oil painting called… A Boy with a Puppet by the renaissance artist Giovanni Francesco Caroto at the Castelvecchio museum in Verona. Reminded of the children, Dr. Angelman published a paper in 1965 that described what he called “puppet children”. At this time, his paper was not immediately recognized as important.
It wasn’t until 1982, when Charles A. Williams and Jaime L. Frias of the department of Pediatrics, Division of Genetics, University of Florida College of Medicine, Gainesville submitted a paper to the American Journal of Medical Genetics reporting studies of six patients and comparing their data to those from previous reports – severe developmental delay, “puppet-like” gait, craniofacial abnormalities, and frequent episodes of laughter that it became clear the syndrome was more common than previously thought. They proposed the name of this disorder be changed to Angelman Syndrome.
Historical notes on Angelman Syndrome by Dr. Charles Williams
I first became aware of the condition now called Angelman syndrome (AS) when my teaching professor, Dr. Jaime Frias, diagnosed the syndrome in 1978 in an adult woman. By 1980, we had to our surprise identified 6 individuals with this condition and they all lived in a mental retardation institution here in Gainesville so we believed that the syndrome was not a rare condition. We subsequently published on these cases (1982) and suggested that the condition be called Angelman syndrome (AS).
In 1986, I decided to establish the Angelman Research Group (ARG) for the purpose of facilitating research on and education about AS. At that time, AS was a syndrome of unknown cause and not even the deletion on chromosome 15 was known to be associated with it. The financial support for the ARG came from the Raymond C. Philips Research and Education Unit at the University of Florida. By 1990, the ARG would eventually become the U.S. Angelman Syndrome Foundation (ASF).
In 1986, I telephoned Dr. Angelman who was retired and living at that time near Portsmouth Harbor in southern England. It seemed essential to have Dr. Angelman’s affirmation and involvement in the ARG, so I was a bit nervous about the call as I was afraid that he might be annoyed by my unannounced calling. Of course, Dr. Angelman was delighted to talk and offered to help in any way possible. His wife, Audrey, was equally enthusiastic, especially about helping families who had a child with AS. Harry wanted to know all about the genetic research on the syndrome and was pleased to know that others were actually interested in it.
Dr. Angelman was a practicing general pediatrician who also had an interest in neurological conditions. Somewhat on his own, and notwithstanding the work load of a busy general pediatric practice, he also studied and pondered the problems of autism and of the “puppet children” he had first described (1965). He took early retirement, troubled by a hip arthritis problem, but as his notoriety increased and more AS parent organizations began to spring up around the world, his life would get busier. Audrey especially was active, corresponding with parents and AS organizations around the world. Harry was of quick wit and had a great sense of humor. He was articulate and spoke concisely and always to the point. He knew much about Spanish and Italian languages, and during his retirement he translated Italian medical textbooks (he learned Italian while in the military in World War II and served as a military physician for Italian prisoners housed in India ). Harry was happy to talk with families at any time and he regretted that there were so few medical treatments for AS but he was optimistic that genetic research would bring treatments and possibly a cure.
The three researchers listed below were “pioneers” in early Angelman Syndrome research.
Dr. Charles Williams
Professor of Pediatrics and Medical Genetics Division of Genetics and Metabolism
University of Florida College of Medicine
Dr. Charles Williams is a Professor Emeritus in the Department of Pediatrics, Division of Genetics and Metabolism. He is board-certified in medical genetics and pediatrics and received his M.D. degree and his clinical genetics training at the University of Florida. From 1986 until 2000, he served as chief of the Division of Genetics. The majority of his academic assignment involves evaluating families in the division’s clinics that are held in Gainesville and throughout central and north Florida. He also provided consultation to the Florida School for the Deaf and Blind in St. Augustine.
Dr. Williams has published widely in scholarly journals. He has a long-term research and advocacy interest in Angelman syndrome and was instrumental in founding the US Angelman Syndrome Foundation (ASF) where he currently serves as member of the Scientific Advisory Committee.
He has a special research interest in neurogenetic and neuromuscular syndromes including those involving intellectual deficiency, movement disorders, and brain malformations and neural migration disorders. His clinics have also evaluated individuals with known genetic conditions such as Neurofibromatosis and many rare syndromes including Noonan, Marfan and Ehlers-Danlos. He has often been consulted to evaluate children who have had extensive genetic and metabolic testing but in whom no genetic cause has yet been found for their developmental problem.
Joseph E. Wagstaff, MD, PhD
August 5, 1955 – April, 8, 2008
In 1997, Dr. Joseph Wagstaff and Dr. Arthur Beaudet discovered that the cause of AS is a mutation in the UBE3A gene (which is missing in the case of a deletion.)
Dr. Joseph Wagstaff received his A.B. degree summa cum laude from Duke University in 1976, a PhD degree in 1983 and a MD degree in 1986 from the University of Chicago. He completed his post doctoral training at the University of California, San Francisco and the University of Chicago. Dr. Wagstaff was a pediatrician, medical geneticist and researcher, most recently at Carolinas Medical Center in Charlotte, NC. Dr. Wagstaff made significant contributions to Angelman Syndrome research. He served as the chair of the Scientific Advisory Committee for the Angelman Syndrome Foundation (ASF), and in 2005 he received the prestigious Claudia Benton Research Award from the ASF. He was a prolific author in the medical field, while dedicating his life to the benefit and care of his patients and their families. Loved by his patients, admired by students and staff and respected by colleagues, Dr. Wagstaff was recognized for his many professional contributions, his keen sense of humor and his kindness to all. He lived each day in service to others while always sharing his characteristic acknowledgment of life’s many ironies.
Memorials can be made to Dr. Wagstaff’s ASF memorial research fund at:
Memorial Research Fund
Joseph E. Wagstaff Postdoctoral Fellowship
Dr. Arthur Beaudet
In 1997, Dr. Joseph Wagstaff, and Dr. Arthur Beaudet discovered that the cause of AS is a mutation in the UBE3A gene (which is missing in the case of a deletion.) Dr. Beaudet is a professor and chair of molecular and human genetics at Baylor College of Medicine.
***Appeared in the 1999 edition, Angelman Syndrome from A to Z. Artist P.J. has a sibling with Angelman Syndrome.
***Appeared in the 1999 edition, Angelman Syndrome from A to Z.
In church several years ago, the family went to the altar for communion. We take our angel David with us and give him some of the bread. However, he won’t drink the grape juice. On this Sunday we were getting back into our pew when David had to sneeze. Well, the poor gentleman sitting in front of us was splattered. He had bread on his jacket and in his hair. Fred was picking bread out of his hair while the rest of the family was trying to keep from joining David in laughter. The poor man was very gracious, but has never sat in front of us again! We, and other church members, still have a laugh when we think of it!
Fred and Carolyn Windbeck Silver Spring, Maryland angel David, age 29
If an Angel could speak, this is what they’d probably say:
Here are the rules of the game… I throw it behind the couch and you go find it!
Do you really need that full head of hair?
Let’s have another slumber party tonight!
Surprise! I understand everything you say, so be careful!
If I hear the sound of the microwave, I expect food!
I am a lot smarter than you think, and I hide it sometimes to get out of WORK!
When I laugh hysterically, it really, really IS funny!
Someday I am going to hold you down, trim your fingernails, and see how YOU like it!
A swimming pool =water= FUN TIME!
Don’t be in such a hurry to take me out of the bathtub!
I see an iPad; I HAVE TO HAVE IT!
If you take me out of my routine, I am really NOT going to be happy!
Sometimes I just want to be a kid!
Babies are OK… as long as I AM THE CENTER OF ATTENTION!
Could we take the TRAIN next time instead of the PLANE?
I have to confess; sometimes it really is my fault instead of my sibling’s!
I’ll take the macaroni and cheese!
Wish you didn’t have to work so hard taking care of me!
Never give up on me!
Sometimes you go a little overboard with the “I love yous”; but the truth is, I really love you a lot, too!