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.