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Angelman Syndrome Information

What is Angelman Syndrome?

Having a little guy (now 9 years old) with Angelman Syndrome, and having named my business after him and his disorder, I am often asked this question.



About ANGELMAN SYNDROME:

Our Little Angel Man...


I'd like to introduce you to our Angel, Cameron. This little man has had such a positive influence in our lives- giving us much more purpose and understanding of what is really important.

Cameron has Angelman Syndrome, a genetic disorder named after the doctor who originally discovered it, Dr. Harry Angelman.  Because of their generally happy and sweet personalities and because of the name, parents and caregivers often refer to people with AS as Angels. Although AS has many characteristics, some of the most frequent are:

  • Frequent laughing or smiling; easily excitable
  • Developmentally delayed, severe
  • Little or no use of words
  • Usually have seizures, various types                                   
  • Feeding problems (suck, swallow)
  • Sleep disturbance
  • Stiff, jerky gait
  • Fascination with water
  • Strabismus                                       

Angelman Syndrome was once thought to be quite rare, but is now believed to not be as rare as was thought. Many people have been misdiagnosed, and there are also new ways to test for AS.

Ironically, my husband and I had discussed the possibility of raising a child with special needs before starting a family.  We felt that if this was something that happened, we would welcome the situation, as we felt we had a lot to offer a special child.  So, when we received the official diagnosis when our son was a few months old, we felt it was meant to be. It was as though someone had listened to our conversation that day, knew we could handle it, and chose him special for us. 

The most difficult part of having a child with AS is the fact that I know my first child will never tell me in words that he loves me.  This is the part I find most difficult in explaining the disorder to someone who is unfamiliar with it. But, I've come to realize that there is more to expressing your love for someone that saying it in words. There are the constant smiles and laughs, the expressions he gives, the snuggles, the way his eyes light up when he sees us.  His little face speaks louder than any words can.

If I can pass along any words to those who do not have a family member with a disability, or those that have a child that is newly diagnosed, they would be:

  • A person doesn't need 'words' to communicate. They are always communicating, we just have to learn to pay attention 
  • Parents of children with disabilities do not want others to feel sorry for them. They appreciate respect from those that understand their job is challenging, but do not want to be pitied. There are a lot of rewards to this difficult job too!
  • There is no greater gift to the parents of a special needs child than the gift of time and understanding. To offer to watch the kids for a few hours (even with them at home so they can have a nap) is one of the nicest things you could offer a parent.  When we moved to a small community, a very sweet woman who lives there heard about our family. She offered to come over and watch the kids, introduced us to someone who was willing to come over and do therapy with our son, another family who offered to watch the baby when we had appointments, and even brought us a pie and cookies.  This was a woman who had not known us before, and owed us nothing. Yet, she made time in her busy life to make things easier for us.  I will never forget her gift of time and her caring. And of course the pie :)
  • Examine your attitude at which you look at someone who is disabled, or different. I do not feel sorry for my son, nor do I want anyone to do so.  I never understand those that try to feel sorry for him or us- he is a happy, little person.  He takes great pleasure in the simple things in life. He is loved immensely and respected.  He won't have to take calculus in high school!  He will probably never know jealousy, hatred, betrayal, being self-conscious, depression, pettiness, shame, or all the terrible things that go on in the world.  I wish we were all so lucky.

I am blessed in that I can use my business as a means to educate others about Angelman Syndrome, and special needs issues. I hope to dispel some myths about those with special needs. Although it is a challenging journey, SO many of us parents are grateful for our children, and adore and embrace our kids, special needs and all. Empathy is nice for the rough times, but sympathy is bad. So, please help us celebrate our special kids!

The following is a link to a PDF of an article I wrote on my special needs son, who is 'perfect'. This article was published in 2004 in The Telegraph Journal. It is a good view into our outlook on life and with our son, and those with special needs. Enjoy!
*NEWSPAPER ARTICLE CAMERON*


Other questions you may have:

What is the life expectancy of someone with Angelman Syndrome?
The life expectancy of someone with Angelman Syndrome is believed to generally be the same as anyone else's. However, it was really only within the last few decades that people started getting a diagnosis, so people with AS have not been followed for their lifetimes. If the person doesn't have any other significant health issues, you can assume that someone with AS will live a long life into adulthood. That being said, there are some aspects of AS that can attribute to a life shorter than most. People with AS usually suffer from seizures, which can be difficult to control and like anyone with epilepsy may prove to be fatal. There are other complications that can occur from things like feeding difficulties or side effects of chronic reflux, like pneumonia. They may have complications due to seizure medications or other medications. People with AS have to be watched very closely, much like one would have to watch a toddler, and watch out for safety issues (things like choking, drowning, etc)

Is Angelman Syndrome a disease?
Angelman Syndrome is not a disease- it is a genetic disorder. Typically people with Angelman Syndrome progress with skills (just at a much slower rate). They don't usually lose skills unless they have issues with seizures or something that might set them back.

How do I communicate with someone with Angelman Syndrome?
Children or adults with Angelman Syndrome are usually non-verbal. Some may have a few words, or may even have their own language that only those close to them understand. Assume that someone with AS understands you, and speak to them, even if you do not get a response from them. They usually have more receptive language (that being given or said to them) then they can express. Some with AS may also communicate through pictures or photos, or even with gestures. Don't forget about their expressions- that says a lot too :)
You can always ask the caregiver that is present to assist you with communication. The important thing is to always communicate with them- even if you don't get a response. "Non-verbal" individuals need to be spoken to too.

In my spare time :) I tinker away at adding to my special needs blog & podcast. Please check it out here, and don't forget to register for updates:




For more information & support, please visit these sites:


www.angelman.org  Angelman Syndrome Foundation (US)

www.angelmancanada.org    Canadian Angelman Syndrome Society

www.armyofangels.org    Run by a devoted Angel dad, this site contains a lot of information related to AS.

www.sheldonhickey.com    A touching site dedicated to their young Angel daughter Maggie. Includes details of Maggie's life and diagnosis, as well as some valuable links about AS.

http://www.angelmanforum.org     A web forum for AS parents and caregivers.

Hipper Bib    Another AS inspired business! The Hipper Bib was designed by the mother of Ian, a young boy with Angelman Syndrome. It is a stylish kerchief style bib that protects the clothing with it's inner stay-dry drool resistant layer. They have great prints for big boys & girls. Check it out!





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