Saturday, March 20, 2010

3-21

Tomorrow is World Down Syndrome Day. A day to educate and a day to celebrate. I am celebrating my connection to Down syndrome by honoring Cameron. I am going to list 21 facts about Cameron and hopefully remind people that what he has brought to our family and friends  far outweighs any of the pittfalls we've encountered along the way.

1. Cameron was 5lbs 4oz at birth and it took him 6 months to reach 10 lbs.

2. At just 6 months of age, Cameron had open heart surgery to repair a hole in his heart. He stayed in the hospital for 7 days.

3. Cameron rolled over for the first time when he was at the hospital the day of his surgery while getting his pre-op things out of the way.

4. Cameron is a middle child. He has an older brother Alek and a baby sister Rylee.

5. Cameron started walking when he was 3 1/2 years old. His baby sister had just arrived and he had to show her up!

6. Before Cameron began talking, he used sign language to communicate. He could sign around 200 words and although he doesn't use the signs since he has started to talk.....he still remembers most of them.

7. Cameron attends school 3 mornings a week in an inclusive preschool setting with our public school system. He even rides the school bus.

8. Cameron wakes up (at the crack of dawn) with a smile on his face. He truly is happy "most" of the time.

9. Cameron's favorite color is orange.

10. His favorite food is burger with fries and ranch.

11. Cameron loves his family and grandparents.

12. Cameron once had a therapy dog which he didn't care for. We have since gotten a stray dog whom he has named "B Curtis". He and B are best friends.

13. Cameron is very loving. He loves to hug and kiss us all.

14. Cameron touches the hearts of all who know him. We never get tired of hearing how much everyone loves him.

15. Cameron knows the names of every restaurant we pass while driving in the car.

16. Cameron knows the words to a lot of the popular songs on the radio and can even request them by name.

17. Cameron stays very healthy and unlike a lot of the literature you read about Down syndrome.

18. Cameron has the best sense of humor. He loves to make people laugh.

19. If you are ever sad, Cameron is sure to make you smile.

20. Even though it takes a little more work, Cameron does his best to accomplish every task he is given.

21. Most importantly........Cameron is loved so much by all of us, especially me. I look back on my life and am so thankful that I have been given this very special gift. If I could get 10 more just like him, I would surely take them

So celebrate with us as we continue to enjoy all of the wonderful things we have gotten with Cameron. He has brought to us the important things in life.....the kind of things you can't buy with money.

Tuesday, March 16, 2010

Be careful what you wish for.........

When Cameron was just a newborn, I began to worry a lot about how his disability would affect our family and our other child at the time. One of my biggest concerns was that they wouldn't have the normal relationship that brothers do because Cameron was different. Boy was I wrong. I have had the pleasure and sometimes annoyance of the typical brotherly love that you see between brothers. Conversation from the car the other day.

There was a good song on the radio.

Cameron: Radio Up Mama Please

Me: Ok

Cameron: Thanks Mama

Well then Alek begins to tell me some story about school.

Cameron: (yelling) SHHHHHH. Quiet.

Alek: I do what I want (show Cameron his fist)

Cameron: Go away.

Alek laughs

Cameron: fine ever

As annoying as this is , especially in the car it is also heartwarming to know that the relationship my boys have is no different than the relationship I had with my siblings and that all siblings have. I love that Alek doesn't treat Cameron different. Not that being a bullying big brother is a good thing, but it is a normal thing. And Alek is right there to defend Cameron and help him when he really needs him. It is the days such as these that make me so proud to be a mother.

Tuesday, March 9, 2010

Talks with an 11 year old boy

I have decided that rather than forget these memorable moments I have with my oldest son, I will share them and even keep record of them. They will be good stories to use when he is older and when he brings girls home etc. Our brief conversation last night regarding saving money......

Me: When you start cutting grass this summer you are going to be required to save some of the money you make rather than just spending it all.

Alek: I know, Mom.

Me: Well you can't just spend it all and have nothing to show for it.

Alek: What about if I put 2% in the bank?

Me: You're going to put half in the bank!

Alek: What about if I put 50% in the bank?

Me: That sounds good!

Now keep in mind that my child, this child is in the "gifted program" at school. This did however provide us all with a great laugh, he even thought it was funny when I told him that half is 50%.

Wednesday, March 3, 2010

In effort to stop the misuse of the R-Word, I am posting a speech given by a high school senior. I have read this before and thought it was really really good. I'm sure some of you have read it, but for those who haven't, I think you'll agree, it was well written and to the point.

Written by: Soeren Palumbo

"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 gaw! 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. Then pinch the hypocrite that is 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 else 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 a problem 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, especially – 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, like clockwork, arrives at our house at exactly 7'o'clock each morning. She gives me a quick hug goodbye and runs excitedly to the bus, ecstatic for another day of school. 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 mature 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, your dehumanization of them, your mockery of them, it's nothing but another form of hate. It's more hateful than racism, more hateful than sexism, 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 will in our entire lives. Think about how she will always love everyone unconditionally. 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 anything, 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."



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