|
|
Monday, December 19, 2005 |
|
Important & Useful links for Angelman Parents
|
I just wanted to post some addresses that have been very useful for me and family.Some are other Angel blogs full of useful tips and wonderful stories.Some sites range from sign language tapes to adaptive devices and communication devices.Some explain seizures,and others are support groups.There is even one address that shows you how to subscribe to the Angelman listserve. Anyway just thought this info would be useful for those just wanting to learn more about Angelman Syndrome,or those of you who have newly diagnosed children.When we first started our search for info on Angelman,I wish that I had a list of addresses to just click on and find info.It was a search and still is.I am always reading.But this will be a good start for those of you just beginning.
If there are any sites that I missed,I will be glad to add them to the list,please just email me.Thanks and I do hope this helps.
|
posted by angelwings
@
7:31 PM
  |
|
|
|
|
|
Merry Christmas
|
| Just wanted to wish all of our friends and family a very Merry Christmas! Its almost time,hope you have your last minute shopping done. We are almost ready and looking foward to it.Talk to you soon. |
posted by angelwings
@
2:33 AM
|
|
|
|
|
Thursday, December 15, 2005 |
|
Blog Making fun of Death....
|
Ok I have held off on this post so far,but am going to go ahead and post it.Recently there has been an uproar in the Angelman community over a blog created by a 20 yr old college student, that poked fun at the death of an Angelman child. It was distasteful and hard to read.Below is the article written in a St. Louis newspaper.
By Bill McClellanST. LOUIS POST-DISPATCH12/11/2005Bill McClellan[More columns][Bill's Biography]Matthew was born with Angelman syndrome. He was mentally retarded. He was prone to seizures. As is typical of children with the genetic disorder, his movements were jerky and marionette-like. When he was 12 years old, he got up in the middle of the night and went into the living room. He opened a footrest on a reclining chair and put his head in. His jerky movements apparently caused the footrest to clamp down on his neck. Efforts to extricate himself only made matters worse. He suffocated.Are you having fun yet?Me neither. But let me continue.Matthew's sister wrote an account of her brother's death for a Web site created for the siblings of children with Angelman syndrome. The Web site was set up so these siblings could talk with other kids who are confronting the same problems. It is not easy to live with a disabled sibling. And so Matthew's sister posted her note. She said her brother was still an important part of her life. A student from Washington University came upon the Web site. She linked the site to her personal blog and she wrote:
"Welcome, gentle readers, to a special installment, designed to raise awareness of Angelman's syndrome - the world's most hilarious form of mental retardation." She put in a warning: "Stop here if you can't stand retard jokes."She defined the fate of children born with the syndrome: "In essence, they become the ultimate spaz." Maybe her grammar wasn't so good, and I'm patching up some of her spelling, but you get the spirit of the thing. She quoted Matthew's sister's entry, and wrote: "It really breaks my heart to hear of little Matthew's accidental, self-inflicted, and cartoonish death. I'm very sorry . . . but not so sorry that the thought of a retard strangling himself with a Lay-Z-Boy doesn't make me break into hysterical laughter. But seriously folks, our society needs to get to know Angelman syndrome. We need to grow closer as a community and love our 'tards."Perhaps because she had linked the Web site to her blog, parents of children with Angelman syndrome read her postings. Many were furious. They posted angry notes on her blog. Some threatened to complain to Washington University. The student mocked and taunted the parents."Believe it or not, gentle readers, my blog was on my college application. For my writing scholarships, at least. Apparently some members of academia find my (expletive deleted) amusing. Who'da thunk it." She taunted another parent, a mother, and said that she bet the mother, when pregnant, had dreamed of a child with whom she could talk about books, a child who would someday go to college, who would someday get married.The rhetoric got more heated. The student's mother contributed a posting. "People - puh-leeze! You visit a blog to read the personal ramblings of a college student who may or may not express a politically correct viewoint on a subject in which you have an emotional investment and you feel you can dictate both the tone and the content of said essays. You may not. Oh wait! I get it! You have to assault my daughter with your gramatically challenged rants because you will never be able to direct your frustration where it really belongs: your 'little angel.' Let's take a survey: Despite growing pressure in this country to never say or write anything which has the teeth to offend so much as a blade of grass, how many readers think Death by Barcalounger is hilarious? I do, so blame me for my daughter's ability to twist tragedy into sarcastic irony."
That posting explained a lot.Because the student has boasted about her scholarships at Washington University, many parents complained to the university. Those complaints landed on the desk of James E. McLeod, dean of the College of Arts and Sciences. I visited him Friday.He said he had heard from many parents. I could use many words to describe their messages, he said. Most were angry. Most were hurt. Some were outraged. Some understood the difficulty of responding to personal views on a personal blog, he said. He wrote a letter of apology to the parents on behalf of the university for the "insensitivity of our student."McLeod said he could not discuss any conversations he might have had with the student - and I have decided not to use her name because she calls herself, on her blog, "an attention whore," and would clearly relish more notoriety - but he did say that it would be fair to say that free speech is the guiding principle in this case."To punish a person for their words would be a serious breach in our understanding of this principle," he said. "The principle is awfully precious."It is a principle that only comes to the fore when the speech is unpopular. Still, it would be much easier to defend free speech if the speech involved some unpopular political viewpoint. But making fun of severely retarded children? Making light of a such a child's death?"It's painful," McLeod said.
Anyway just thought some of you might want to read this. Most of you who know us,have heard my husband and I speak of this incident. I just thought you might want to read what all the fuss was about.
I must say that it is really sad that there are people that think like this, in our society. We can only hope that one day when she grows up,she will understand that she has taken things to far and understand why all of us parents and friends are so quick to stand up an defend our kiddos, when we feel they are being violated. Sorry to upset anyone with this post. |
posted by angelwings
@
2:37 AM
|
|
|
|
|
Wednesday, December 14, 2005 |
|
Angelman Braclets
|
| I wanted to remind everyone to go to http://www.angelman.org/angel/index.php?id=193 and purchase your Angelman Awareness Braclet.Remember that a portion of the proceeds will go to the Angelman Syndrome Foundation.Its a wonderful way to spread the word and help people become familiar with A.S. |
posted by angelwings
@
2:20 AM
|
|
|
|
|
Tuesday, December 13, 2005 |
|
Calendar Project
|
I just wanted to let everyone know that Erin Sheldon and her family, from the Angelman listserve,are doing a fundraiser to benefit the Angelman Syndrome Foundation. A portion of the money will go to the foundation and will aid in research and many other things.This calendar has over 100 pictures of different Angels,it is wonderful,so hurry up and place your order. Erin said,"There's donors who will match any gift to the ASF between now and Christmas so we want to send in our check now and get it matched! " So I ask that you please contribute to this wonderful cause. And you can check Erins daughter,little Maggie,at on her blog. To order your calendar go to http://www.sheldonhickey.com/Calendar/index.htm
Thanks so much for your help. |
posted by angelwings
@
5:10 PM
|
|
|
|
|
|
Update on Brady
|
| Just wanted to let you all know that I took Brady to the doc today because his hand got worse.The doc said it was an allergic reaction for sure.He gave Brady a shot and some cream to use on his hand and finger.He aslo wants us to get an eppie pen to carry with us incase he does get bit again and his reaction is worse.He seemed very concerned that next time it could be worse.But Brady is fine now,not sleeping from that shot,but fine.His hand seems better and hes not picking at it nearly as bad as before.Just wanted to let you all know. |
posted by angelwings
@
1:34 AM
|
|
|
|
|
Thursday, December 08, 2005 |
|
Bradys ER Visit
|
| Well I just happened to be up at 3am. I just got back from the ER with Brady. He woke up crying about 1am and was picking at his finger and hand. It was swollen and really red. He isnt allowed to take anything except motrin and tylenol,we didn't know what else to do for it.So we decided to take him and have it checked to make sure it was nothing serious. The doctor was really nice. He said that is was an allergic reaction to a bite of some kind. I suspect it was a wasp,because I killed one earlier and swept it up,but hadn't thrown it in the garbage yet.He is all over the place so he probably picked it up.Anyway the doctor was afraid to give him anything,as today is our 3mth anniversary with no seizures and I told him I preferred to keep it that way,he agreed. So its motrin and ice packs. But he is fine now,sleeping sound. Im going to try and get some shut eye myself,wont be long til time to get up. Anyway just thought I would let you all know. |
posted by angelwings
@
3:04 AM
|
|
|
|
|
|
More Angels
|
| Just wanted to share some more Angel pictures with everyone.Enjoy. |
posted by angelwings
@
1:43 PM
|
|
|
|
|
Monday, December 05, 2005 |
|
More Angel Friends
|
| Here are some more of Bradys Angel friends. |
posted by angelwings
@
10:31 PM
|
|
|
|
|
| |
