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Saturday, March 31, 2007
Our blocks are in!!
Just wanted to let everyone know that our Paint a Block kits are in. I have plenty of extras right now,but they are going fast! So be sure that you contact me as soon as possible at sfore@centurytel.net if you want to purchase a block. We have several already painted and in,they look great! Our Angelman Awareness wall is coming together!!!

posted by angelwings @ 11:22 PM
   0 comments
Thursday, March 22, 2007
This is an essay by Soeren Palumbo who is a senior honors student and big brother to Olivia. Last week at Fremd High School in Palatine during Writer's Week,he gave the following speech that he wrote to a gymnasium full of his high school peers and faculty and received a standing ovation. We need more Soeren's in the world! Soeren never felt that there would be interest in his piece beyond the doors of the school. I think he was wrong. The Speech
"I want to tell you a quick story before I start. I was walking through hallways, not minding my own business, listening to the conversations around me. As I passed the front door on my way to my English classroom, I heard the dialogue between two friends nearby. For reasons of privacy, I would rather not give away their race or gender. So the one girl leans to the other, pointing to the back of a young man washing the glass panes of the front door, and says, "Oh my gawd! I think it is so cute that our school brings in the black kids from around the district to wash our windows!" The other girl looked up, widened her slanted Asian eyes and called to the window washer, easily loud enough for him to hear, "Hey, Negro! You missed a spot!" The young man did not turn around. The first girl smiled a bland smile that all white girls - hell, all white people have and walked on. A group of Mexicans stood by and laughed that high pitch laugh that all
of them have. So now it's your turn. What do you think the black window washer did? What would you do in that situation? Do you think he turned and calmly explained the fallacies of racism and showed the girls the error of their way? That's the one thing that makes racism, or any discrimination, less powerful in my mind. No matter how biased or bigoted a comment or action may be, the guy can turn around and explain why racism is wrong and, if worst comes to worst, punch em in the face. Discrimination against those who can defend themselves, obviously, cannot survive. What would be far worse is if we discriminated against those who cannot defend themselves. What then, could be worse than racism? Look around you and thank God that we don't live in a world that discriminates and despises those who cannot defend themselves. Thank God that every one of us in this room, in this school hates racism and sexism and by that logic discrimination in general. Thank God that every one in this institution is dedicated to the ideal of mutual respect and love for our fellow human beings. Then pinch yourself for living in a dream. Then pinch the hypocrites sitting next to you. Pinch yourself once for each time you have looked at one of your fellow human beings with a mental handicap and laughed. Pinch yourself for each and every time you denounced discrimination only to turn and hate those around you without the ability to defend themselves, the only ones around you without the ability to defend themselves. Pinch yourself for each time you have called someone a "retard". If you have been wondering about my opening story, I'll tell you that it didn't happen, not as I described it. Can you guess what I changed? No, it wasn't the focused hate on one person, and no it wasn't the slanted Asian eyes or cookie cutter features white people have or that shrill Hispanic hyena laugh (yeah, it hurts when people make assumptions about your person and use them against you doesn't it?). The girl didn't say "hey Negro." There was no black person. It was a mentally handicapped boy washing the windows. It was "Hey retard." I removed the word retard. I removed the word that destroys the dignity of our most innocent. I removed the single most hateful word in the entire English language. I don't understand why we use the word; I don't think I ever will. In such an era of political correctness, why is it that retard is still ok? Why do we allow it? Why don't we stop using the word? Maybe students can't handle stopping- I hope that offends you students, it was meant to - but I don't think the adults, here can either. Students, look at your teacher, look at every member of this faculty. I am willing to bet that every one of them would throw a fit if they heard the word faggot or nigger - hell the word Negro - used in their classroom. But how many of them would raise a finger against the word retard? How many of them have? Teachers, feel free to raise your hand or call attention to yourself through some other means if you have. That's what I thought. Clearly, this obviously isn't contained within our age group. So why am I doing this? Why do I risk being misunderstood and resented by this school's student body and staff? Because I know how much you can learn from people, all people, even - no, not even, specially the mentally handicapped. I know this because every morning I wake up and I come downstairs and I sit across from my sister, quietly eating her cheerio's. And as I sit down she sets her spoon down on the table and she looks at me, her strawberry blonde hair hanging over her freckled face almost completely hides the question mark shaped scar above her ear from her brain surgery two Christmases ago. She looks at me and she smiles. She has a beautiful smile; it lights up her face. Her two front teeth are faintly stained from the years of intense epilepsy medication but I don't notice that anymore. I lean over to her and say, "Good morning, Olivia." She stares at me for a moment and says quickly, "Good morning, Soeren," and goes back to her cheerio's. I sit there for a minute, thinking about what to say. "What are you going to do at school today, Olivia?" She looks up again. "Gonna see Mista Bee!" she replies loudly, hugging herself slightly and looking up. Mr. B. is her gym teacher and perhaps her favorite man outside of our family on the entire planet and Olivia is thoroughly convinced that she will be having gym class every day of the week. I like to view it as wishful thinking. She finishes her cheerio's and grabs her favorite blue backpack and waits for her bus driver,Miss Debbie, who,7'o'clock each morning. She gives me a quick hug goodbye and runs bus, ecstatic for another day of school. And I watch the bus disappear around the turn and I can't help but remember the jokes. The short bus. The retard rocket. No matter what she does, no matter how much she loves those around her, she will always be the butt of some immature kid's joke. She will always be the butt of some adult's joke. By no fault of her own, she will spend her entire life being stared at and judged. Despite the fact that she will never hate, never judge, never make fun of, never hurt, she will never be accepted. That's why I'm doing this. I'm doing this because I don't think you understand how much you hurt others when you hate. And maybe you don't realize that you hate. But that's what is; your pre-emptive dismissal of them,u your dehumanization of them, your mockery of them, it's nothing but another form of hate. It's more hateful than racism, more u hateful than sexism,u more hateful than anything. I'm doing this so that each and every one of you, student or teacher, thinks before the next time you use the word "retard", before the next time you shrug off someone else's use of the word "retard". Think of the people you hurt, both the mentally handicapped and those who love them. If you have to, think of my sister. Think about how she can find more happiness in the blowing of a bubble and watching it float away, than most of us will in our entire lifetime. Think about how she will never hate. Then think about which one of you is "retarded". Maybe this has become more of an issue today because society is changing, slowly, to be sure, but changing nonetheless. The mentally handicapped aren't being locked in their family's basement anymore. The mentally handicapped aren't rotting like criminals in institutions. Our fellow human beings are walking among us, attending school with us, entering the work force with us, asking for nothing but acceptance, giving nothing but love. As we become more accepting and less hateful, more and more handicapped individuals will finally be able to participate in the society that has shunned them for so long. You will see more of them working in places you go, at Dominicks, at Jewel, at Wal-Mart. Someday, I hope more than anythis, one of these people that you see will be my sister. I want to leave you with one last thought. I didn't ask to have a mentally handicapped sister. She didn't choose to be mentally handicapped. But I wouldn't trade it for anything. I have learned infinitely more from her simple words and love than I have from any classroom of "higher education". I only hope that, one-day, each of you will open your hearts enough to experience true unconditional love, because that is all any of them want to give. I hope that, someday, someone will love you as much as Olivia loves me. I hope that, someday, you will love somebody as much as I love her. I love you, Olivia.

speech by Soeren Palumbo

posted by angelwings @ 7:34 PM
   1 comments
Wednesday, March 21, 2007
Update on Paint a Block Fundraiser.
Just wanted let everyone involved in our Paint a Block project,for our Angelman Syndrome Awarenesss Wall,know that the blocks have been ordered and will be in very soon. So get those paint brushes ready!!
We have ordered plenty of extra blocks to sell,so those of you havent gotten your order in yet,dont worry. Just email me at sfore@centurytel.net if you want a to purchase a kit,and I will give you further instructions via email. I am going to move the deadline up to May so we do still have some time. Anyway thanks so much for all your help with this project.
Oh I also wanted to add,Brady is walking all over the place and loving it,lol. Were so excited!!!

posted by angelwings @ 6:53 PM
   0 comments
Saturday, March 17, 2007
Latest Update.
Brady is doing really well these days. He is progressing left and right and actually sleeping more than before. He had a great week last week. He sat for the entire session of prek,in his chair and participated in all the activities. The teacher had to walk out of the room for a minute and when she came back in,Brady was still sitting in his chair waiting for her. He just giggled when she came back in,he was so proud of himself. He was supposed to pick up rubber frogs and put them into a frog container on the table. But the catch was,that he had to choose the frog over some toy rings that were placed on the table as well. He was able to choose the frogs instead of the rings,and he placed them into the container,we are so proud of him.
He also had a very good session in Pt as well. He showed more balance than ever before. He was able to right himself when he started leaning forward or backward and he took 20 independent steps during the session. He is finally getting over some of the insecurities of walking and is beginning to really enjoy the new found independence.
He has been seizure free since the one seizure at Christmas,so were very proud of that as well.
Anyway just wanted to share Brady's newest accomplishments with everyone. He is such a big boy these days, I cant believe he will turn 5yrs old in May.
Time really does fly by,they just dont stay little for long. Hugs to everyone. Will post again soon.

posted by angelwings @ 12:25 AM
   1 comments
Sunday, March 04, 2007
Vacation photos 2/07.









































































































































posted by angelwings @ 10:25 PM
   1 comments


What is Angelman Syndrome?

                 

About Brady

Read Brady's Story Here   

I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

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