Saturday, October 29, 2011
31 for 21: Day 29- Sister Love Sat
31 for 21: Day 28- Famous Netflix Movie "UP SYNDROME
I Love this story how wonderful. True friendship.. Pls click on links an watch.
Part 1: http://youtu.be/9tTBSUPM_3U
Part 2: http://youtu.be/mYtXcu11-2M
Part 1: http://youtu.be/9tTBSUPM_3U
Part 2: http://youtu.be/mYtXcu11-2M
31 for 21: Day 27- One Thing I Want People To Get ( or understand) About T21
- Kayde is a little boy 1st secondary to having Down Syndrome.
- People with Down syndrome are just that. They’re people. They’re not “inspirations,” they’re not “sweethearts,” they’re not “little angels.” They can be some or all of those things, but so can you. Having an extra chromosome does not put you on the fast track to sainthood, nor does it strip you of your humanity. A person with Down syndrome is not their diagnosis.
They are individuals. They learn throughout their lives. They’re not “adult children.” Adults with Down syndrome desire the same things typical adults do: independence, companionship, purpose in life. With appropriate supports, these things are more than possible for people with Down syndrome. They do not require paternalistic, pat-on-the-head treatment. They often require supports, yes, but they also require – and are deserving of – our respect as equals.
- People with Down syndrome are just that. They’re people. They’re not “inspirations,” they’re not “sweethearts,” they’re not “little angels.” They can be some or all of those things, but so can you. Having an extra chromosome does not put you on the fast track to sainthood, nor does it strip you of your humanity. A person with Down syndrome is not their diagnosis.
They are individuals. They learn throughout their lives. They’re not “adult children.” Adults with Down syndrome desire the same things typical adults do: independence, companionship, purpose in life. With appropriate supports, these things are more than possible for people with Down syndrome. They do not require paternalistic, pat-on-the-head treatment. They often require supports, yes, but they also require – and are deserving of – our respect as equals.
Friday, October 28, 2011
31 for 21:Day 25- National Geographic Kids
I Have Down Syndrome--Know Me Before You Judge Me.
Melissa Riggio shares her thoughts about Down syndrome.
When I first started to work on this story, I thought maybe I shouldn’t do it. I thought you might see that I have Down syndrome, and that you wouldn’t like me.
My mom thinks that’s silly. “Have you ever met anyone who didn’t like you because you have Down syndrome?” she asks me. She’s right, of course. (She usually is!)
When people ask me what Down syndrome is, I tell them it’s an extra chromosome. A doctor would tell you the extra chromosome causes an intellectual disability that makes it harder for me to learn things. (For instance, some of my classes are in a “resource room,” where kids with many kinds of learning disabilities are taught at a different pace.)
When my mom first told me I had Down syndrome, I worried that people might think I wasn’t as smart as they were, or that I talked or looked different.
I just want to be like everyone else, so sometimes I wish I could give back the extra chromosome. But having Down syndrome is what makes me “me.” And I’m proud of who I am. I’m a hard worker, a good person, and I care about my friends.
A Lot Like You
Even though I have Down syndrome, my life is a lot like yours. I read books and watch TV. I listen to music with my friends. I’m on the swim team and in chorus at school. I think about the future, like who I’ll marry. And I get along with my sisters—except when they take my CDs without asking!
Some of my classes are with typical kids, and some are with kids with learning disabilities. I have an aide who goes with me to my harder classes, like math and biology. She helps me take notes and gives me tips on how I should study for tests. It really helps, but I also challenge myself to do well. For instance, my goal was to be in a typical English class by 12th grade. That’s exactly what happened this year!
But sometimes it’s hard being with typical kids. For instance, I don’t drive, but a lot of kids in my school do. I don’t know if I’ll ever be able to, and that’s hard to accept.
Dream Job: Singer
I try not to let things like that upset me and just think of all the good things in my life. Like that I’ve published two songs. One of my favorite things to do is write poetry, and this singer my dad knows recorded some of my poems as singles.
Right now someone else is singing my songs, but someday, I want to be the one singing. I know it’s going to happen, because I’ve seen it. One day I looked in the mirror, and I saw someone in my head, a famous person or someone who was somebody, and I just knew: I will be a singer.
It’s true that I don’t learn some things as fast as other people. But that won’t stop me from trying. I just know that if I work really hard and be myself, I can do almost anything.
See Me
But I still have to remind myself all the time that it really is OK to just be myself. Sometimes all I see—all I think other people see—is the outside of me, not the inside. And I really want people to go in there and see what I’m all about.
Maybe that’s why I write poetry—so people can find out who I really am. My poems are all about my feelings: when I hope, when I hurt. I’m not sure where the ideas come from—I just look them up in my head. It’s like I have this gut feeling that comes out of me and onto the paper.
I can’t change that I have Down syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend.
After all, I would do the same for you.
What Is Down Syndrome?
Down syndrome is an intellectual disability that about 5,000 babies in the United States are born with each year. A person with Down syndrome has 47 chromosomes, microscopic structures that carry genetic information to determine almost everything about a person. Most people have only 46 chromosomes. It’s the extra chromosome that can cause certain physical characteristics (such as short stature and an upward slant to the eyes) and speech and developmental delays. Still, people with Down syndrome are a lot like you: They are unique people with strengths and talents.
Photograph by Annie Griffiths Belt
When I first started to work on this story, I thought maybe I shouldn’t do it. I thought you might see that I have Down syndrome, and that you wouldn’t like me.
My mom thinks that’s silly. “Have you ever met anyone who didn’t like you because you have Down syndrome?” she asks me. She’s right, of course. (She usually is!)
When people ask me what Down syndrome is, I tell them it’s an extra chromosome. A doctor would tell you the extra chromosome causes an intellectual disability that makes it harder for me to learn things. (For instance, some of my classes are in a “resource room,” where kids with many kinds of learning disabilities are taught at a different pace.)
When my mom first told me I had Down syndrome, I worried that people might think I wasn’t as smart as they were, or that I talked or looked different.
I just want to be like everyone else, so sometimes I wish I could give back the extra chromosome. But having Down syndrome is what makes me “me.” And I’m proud of who I am. I’m a hard worker, a good person, and I care about my friends.
A Lot Like You
Even though I have Down syndrome, my life is a lot like yours. I read books and watch TV. I listen to music with my friends. I’m on the swim team and in chorus at school. I think about the future, like who I’ll marry. And I get along with my sisters—except when they take my CDs without asking!
Some of my classes are with typical kids, and some are with kids with learning disabilities. I have an aide who goes with me to my harder classes, like math and biology. She helps me take notes and gives me tips on how I should study for tests. It really helps, but I also challenge myself to do well. For instance, my goal was to be in a typical English class by 12th grade. That’s exactly what happened this year!
But sometimes it’s hard being with typical kids. For instance, I don’t drive, but a lot of kids in my school do. I don’t know if I’ll ever be able to, and that’s hard to accept.
Dream Job: Singer
I try not to let things like that upset me and just think of all the good things in my life. Like that I’ve published two songs. One of my favorite things to do is write poetry, and this singer my dad knows recorded some of my poems as singles.
Right now someone else is singing my songs, but someday, I want to be the one singing. I know it’s going to happen, because I’ve seen it. One day I looked in the mirror, and I saw someone in my head, a famous person or someone who was somebody, and I just knew: I will be a singer.
It’s true that I don’t learn some things as fast as other people. But that won’t stop me from trying. I just know that if I work really hard and be myself, I can do almost anything.
See Me
But I still have to remind myself all the time that it really is OK to just be myself. Sometimes all I see—all I think other people see—is the outside of me, not the inside. And I really want people to go in there and see what I’m all about.
Maybe that’s why I write poetry—so people can find out who I really am. My poems are all about my feelings: when I hope, when I hurt. I’m not sure where the ideas come from—I just look them up in my head. It’s like I have this gut feeling that comes out of me and onto the paper.
I can’t change that I have Down syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend.
After all, I would do the same for you.
What Is Down Syndrome?
Down syndrome is an intellectual disability that about 5,000 babies in the United States are born with each year. A person with Down syndrome has 47 chromosomes, microscopic structures that carry genetic information to determine almost everything about a person. Most people have only 46 chromosomes. It’s the extra chromosome that can cause certain physical characteristics (such as short stature and an upward slant to the eyes) and speech and developmental delays. Still, people with Down syndrome are a lot like you: They are unique people with strengths and talents.
31 for 21: Day 24: Brillkidz.com
What a great web site with lots of useful info an Thanks to Brillkidz.com it is simple an easy to make you own flash cards and lots more. It has been a couple of weeks now since I started with Kayde twice a day for as long as he will pay attention. He has caught on quite well an is starting to anticipate what is coming next. He seems to have certain sounds an reactions to the cards. I especially love all the verbal-ness that has come along with the flash cards. I will be using this web site alot in the years to come..
I see greatness in his eye's an I have made it my duty to help him be the best he can be. We will learn an teach together. :)
31 for 21: Day 23: Oldest man with T21
Adopted Family Helps Man, 70, Become Oldest With Down Syndrome
At 70, Edgar Call is believed to be the oldest man living with Down syndrome. But at home with his adopted family, he’s just one of the kids.
After decades living in group homes, Call moved in with Van and Veanne Elg and their three daughters in West Boise, Idaho. That was 17-years-ago.
Today, the family says they can’t imagine life without Call. The girls consider him their older brother and he refers to Veanne Elg as his mom.
Call, who has the mental abilities of a toddler, is known as a practical joker who loves to sing and dance. Though he has developed some difficulty hearing and has trouble with his vision, Call attends a day program and remains active.
Reaching old age is rare for individuals with Down syndrome who are prone to heart defects, early onset dementia and other ailments. The Elgs say they learned from representatives of Guinness World Records that Call is believed to be the oldest living male with Down syndrome.
Some suggest that the family life Call has with the Elgs may be one reason for his longevity.
Now that Call is getting older, the Elgs briefly considered moving him to a care home, but decided that they couldn’t stand to part with him. “It was never really an option to let him go. We’ve gained so much more than we’ve given,” Van Elg told the Idaho Statesman. To read more click here.
After decades living in group homes, Call moved in with Van and Veanne Elg and their three daughters in West Boise, Idaho. That was 17-years-ago.
Today, the family says they can’t imagine life without Call. The girls consider him their older brother and he refers to Veanne Elg as his mom.
Call, who has the mental abilities of a toddler, is known as a practical joker who loves to sing and dance. Though he has developed some difficulty hearing and has trouble with his vision, Call attends a day program and remains active.
Reaching old age is rare for individuals with Down syndrome who are prone to heart defects, early onset dementia and other ailments. The Elgs say they learned from representatives of Guinness World Records that Call is believed to be the oldest living male with Down syndrome.
Some suggest that the family life Call has with the Elgs may be one reason for his longevity.
Now that Call is getting older, the Elgs briefly considered moving him to a care home, but decided that they couldn’t stand to part with him. “It was never really an option to let him go. We’ve gained so much more than we’ve given,” Van Elg told the Idaho Statesman. To read more click here.
More in Down Syndrome »
Copyright © 2010 Disability Scoop, LLC. All Rights Reserved.
Wednesday, October 26, 2011
31 for 21: Day 22- The Crown on Your Head
From the moment Kayde entered this world at 30 weeks gestation an let out a little cry, as if knowing I needed to know he was ok. I knew he was something very special. At that time little did I know how special he was going to be. :) Around 8am Feb 24th I got to hold my precious son for the 1st time an I will never forget feeling the love flow through my lips as they kissed his tiny sweet head. As reading to Kayde was the way I spent alot of our NICU days. I am always looking for great books, thanks to Auntie M an introducing us to Nancy Tillman an her book " On The Night You Were Born." I was browsing around Chapter's an found "The Crown on Your Head." I stood there in Chapter's reading it, tears slowly running down my face as I smiled. What a great great book. A MUST READ!!!! A wonderful book for children about how loved an special they are. I found it very touching an meaningful for me to share with Kayde an his brother an sister on how special they an he (and every single individual) is. Every child was born with a crown is what the story is about and on one page Nancey says " No one's is brighter, no one's is duller. It's only a crown of a different colour." I love that saying. So ending with that I hope many will read the story as it is truly a worthy read.
31 for 21: Day 21- T21 Test Hits Market
Concerns Linger As New Down Syndrome Test Hits Market
In a move that’s been anticipated for years, a prenatal blood test to detect Down syndrome became available Monday in 20 major cities, the company behind the screening tool said.
The test, developed by California-based Sequenom, accurately identified Trisomy 21 — the most common form of Down syndrome — in 98.6 percent of cases, according to a study published Monday in the journal Genetics in Medicine. The research indicates that there is a false-positive rate of 0.2 percent.
Officials with Sequenom say the new blood test is intended for the estimated 750,000 pregnant women each year who are at high risk for having a baby with Down syndrome. The test can be performed as early as 10 weeks into a pregnancy.
The ability to detect Down syndrome in the womb by analyzing the mother’s blood is considered a breakthrough. Previously available testing methods such as amniocentesis are far more invasive and present a risk of miscarriage.
However, the availability of a noninvasive test has also been met with concern by many of those affected by Down syndrome. They are worried that easier screening could lead to fewer children with the chromosomal disorder and ultimately prompt reduced supports and services for the population.
Nonetheless, advocates at the National Down Syndrome Society were careful not to criticize the development Monday.
“Our concern at NDSS is always for accurate information, from any test, for the pregnant woman and her family,” the organization said in a statement to Disability Scoop.
In anticipation of prenatal blood tests, Down syndrome advocates have worked for some time to promote awareness of what life is like with the developmental disability.
A series of surveys released last month found that the overwhelming majority of people with Down syndrome are happy with their lives. Moreover, family members said that having a person with the disability around gave them a more positive outlook.
The test, developed by California-based Sequenom, accurately identified Trisomy 21 — the most common form of Down syndrome — in 98.6 percent of cases, according to a study published Monday in the journal Genetics in Medicine. The research indicates that there is a false-positive rate of 0.2 percent.
Officials with Sequenom say the new blood test is intended for the estimated 750,000 pregnant women each year who are at high risk for having a baby with Down syndrome. The test can be performed as early as 10 weeks into a pregnancy.
The ability to detect Down syndrome in the womb by analyzing the mother’s blood is considered a breakthrough. Previously available testing methods such as amniocentesis are far more invasive and present a risk of miscarriage.
However, the availability of a noninvasive test has also been met with concern by many of those affected by Down syndrome. They are worried that easier screening could lead to fewer children with the chromosomal disorder and ultimately prompt reduced supports and services for the population.
Nonetheless, advocates at the National Down Syndrome Society were careful not to criticize the development Monday.
“Our concern at NDSS is always for accurate information, from any test, for the pregnant woman and her family,” the organization said in a statement to Disability Scoop.
In anticipation of prenatal blood tests, Down syndrome advocates have worked for some time to promote awareness of what life is like with the developmental disability.
A series of surveys released last month found that the overwhelming majority of people with Down syndrome are happy with their lives. Moreover, family members said that having a person with the disability around gave them a more positive outlook.
Sunday, October 23, 2011
31 for 21: Day 20- Family
What a nice thought while at a lil family get together to get a pic of me an my 3 LO's. An what a classic pic it is..lol..as i'm the only one looking. :)
The loves of my life, I'm truly one lucky momma.
Wednesday, October 19, 2011
31 for 21: Day 19: Brag!!!
What a great day!!! Late this afternoon while having floor time with Kayde, he rolled over...
Hurray!!! Way to go peanut.. I am so on top the world with a permanent smile right now. Kayde has learned already he likes the clapping an cheering he gets from all of us :) he tired himself out on the floor this evening showing off over an over. I'm so proud an can't wait for him to show off his new skill to EI & Physio. An a special thanks to Auntie Pam for always having a camera in her hand an getting his 1st roll step by step...
Hurray!!! Way to go peanut.. I am so on top the world with a permanent smile right now. Kayde has learned already he likes the clapping an cheering he gets from all of us :) he tired himself out on the floor this evening showing off over an over. I'm so proud an can't wait for him to show off his new skill to EI & Physio. An a special thanks to Auntie Pam for always having a camera in her hand an getting his 1st roll step by step...
31 for 21: Day 18- Older Farthers
Older Fathers Linked To Intellectual Disability
Moms aren’t the only ones who pose a risk when they wait to have children. A new study suggests that older dads are responsible for some children developing intellectual disabilities.
In a study of 118 children with intellectual disability caused by a missing, repeated or an otherwise abnormal DNA sequence, Dutch researchers found that in most cases the problem originated with the father’s sperm.
What’s more, the study found that men who had the problematic sperm were often in their 40s and 50s.
The findings, published this month in the Journal of Medical Genetics, are the first to link intellectual disability and older fathers, though paternal age has previously been tied to other conditions like schizophrenia.
Other forms of intellectual disability such as Down syndrome, which occurs when a person has an extra chromosome, are associated with older mothers, reports The (Toronto) Globe and Mail. To read more click here.
In a study of 118 children with intellectual disability caused by a missing, repeated or an otherwise abnormal DNA sequence, Dutch researchers found that in most cases the problem originated with the father’s sperm.
What’s more, the study found that men who had the problematic sperm were often in their 40s and 50s.
The findings, published this month in the Journal of Medical Genetics, are the first to link intellectual disability and older fathers, though paternal age has previously been tied to other conditions like schizophrenia.
Other forms of intellectual disability such as Down syndrome, which occurs when a person has an extra chromosome, are associated with older mothers, reports The (Toronto) Globe and Mail. To read more click here.
Tuesday, October 18, 2011
31 for 21: Day 16: From My Sister
Today is gonna be some posts from my sister that she has put up has her facebook status, in helping raise awareness for 31 for 21. I thank my sister for embracing our new journey an being there supporting me 1000 %.
The aim of this day is to raise awareness and understanding of a condition which affects approximately 1 in 800 births worldwide, and to promote the inherent rights of persons with Down syndrome to enjoy full and dignified lives and be active participants in their communities and society. Activities and events which take place on this day typically showcase the abilities and accomplishments of per...sons with Down syndrome and encourage independence, self-advocacy and freedom for persons with Down syndrome to make their own choices. I borrowed this from a link my sister posted, but in a nutshell it's what I hope most for my nephew. I will help him over come and become what most of us take for granted. Being a part of the comminity and society! GRADE KAYDE :)
- My sister is a mother to a child with Down Syndrome and I am so prou of her
-
31 for 21: Day 15- Started Cereal
Today was so exciting as kayde had cereal for the 1st time. I have been so nervous an anxious about starting food with him. I have read alot about issue's our LO's can face when it comes to eating.Little is known of the underlying cause of feeding problems they may be associated with low muscle tone, which also affects the strength, mobility and range of motion of the oral muscles and can result in weak sucking, swallowing, lip closure, and tongue protrusion and gastroesophageal reflux. The combination of reduced oral space and limited control also contribute to feeding problems. Due to a small oral cavity and mid facial hypoplasia, the infant's lips appear thin, the palate is usually flatter with a high arch in the mid line and the nasal passages are narrowed. But to my surprise an I should have known Kayde did just fine. He opened for the spoon an sucked the cereal right off.. Hurray what a smart boy.. An he opened again like come on mom I have been waiting for this, I watch you eat all the time I know how to do it..lol. He ate almost a hole tablespoon lil piggy. I am so proud an relieved that everything so far has been good. Here are a few pics...
I'm ready Mom
Yummy
Fingers taste extra good
Monday, October 17, 2011
Thursday, October 13, 2011
31 for 21:Day 13- Glad to have a T21 child because....
I feel very blessed to be that 1 out of 800. I consider myself very lucky to be Kayde's momma,an that he choose me. :) I am still very new to our journey but I already have learned so much an I have kayde and his 47 chromosomes for that ,an for that I am glad.
Here's a lil list.
He has shown me to slow down an enjoy.
He has shown me that little things are big,
He has shown me a new medical vocabulary,that i use with pride.
He has shown me patience
He has shown me a wonderful supportive community
He has shown me to accept things I can not change
He has shown me to be more crafty
He has shown me to be more knowledgeable
He has made me a better person
Most of all he has shown me T21 is such a small part of who he is. He is Kayde 1st.
The Sky is your limit peanut reach baby reach....
Here's a lil list.
He has shown me to slow down an enjoy.
He has shown me that little things are big,
He has shown me a new medical vocabulary,that i use with pride.
He has shown me patience
He has shown me a wonderful supportive community
He has shown me to accept things I can not change
He has shown me to be more crafty
He has shown me to be more knowledgeable
He has made me a better person
Most of all he has shown me T21 is such a small part of who he is. He is Kayde 1st.
The Sky is your limit peanut reach baby reach....
Wednesday, October 12, 2011
31 for 21: Day 12- See this planet adopt "World Down Syndrome Day" Sign The Petition
Oh how this needs to happen. How wonderful it would be....
I actually signed twice, once in my name an then again in kayde's.
Everyone pls sign an pass on to everyone we know, an let our and our loved ones with T21 Voice Be Heard
Tuesday, October 11, 2011
31 for 21: Day 11- Deserves to be read and said..
This is not my blog post, it belongs to Rob Icame across it in my blog searching an thought
it was well worth sharing. Great job rob!!!! Kudos
August 9, 2011
Just a Word: The Change-Up Edition
Well. Let it never be said that the entertainment
world isn't committed to providing material to blog
about.
From "The Change-Up", from Universal Pictures
Mitch Planko (Ryan Reynolds), about his friend's twin
babies: "Why aren't they talking? Are they retarded?
This one looks a little Downsy."
Let's dispense, for the moment, with the usual debate
about freedom of speech or how comedy supposedly works
or whether or not anyone needs to lighten up or pull a
stick out of their butt. Instead, let's write a story.
We can even pretend it's fiction.
Imagine a parent with a child who has Down syndrome.
I actually have one in mind, a strong and positive
writer whom I've become friends with over the past
few years. But you probably have your own friends
or acquaintances you can imagine.
So let's say it's a mom, one who spends her days,
her years, taking care of a child, a very special
child in every sense of the word. She loves this
child the way most special needs parents love our
children, which is to say, with equal parts gentleness
and ferocity. She understands what the lesser of her
fellow citizens of this rough world thinks of her kid
when they see the evidence of disability stamped on a
child's face but don't bother to look beyond. Perhaps
she knows better than most how this attitude diminishes
the shallow observer, not her child. Maybe she's found
that peace.
Let's imagine that this mom likes comedies, and not just
polite ones, either. Like most special needs parents, she
probably engages in quite a bit of dark humor herself, the
jokes and remarks made to her spouse or other special needs
parents and no one else. She appreciates edgy humor, and she
liked The Hangover, so when a new movie by the same writer
comes out, she decides to take a few hours out of her weekend
and go see it.
Perhaps her husband watches her child for her while she's at the
movie theater. It would be nice if they could go together, but
that's a luxury that's not afforded to every special needs family.
If she's single (as so many special needs parents are; about 75% get
divorced, according to a recent study), she's had to find a babysitter.
This simple act for a typical family is one fraught with anxiety for
the special needs parent. Qualified babysitters are hard to find;
trust is even more difficult to build. Perhaps a member of her family
will watch her child, but that's not a given, either. Many special
needs parents have family members who don't get it, who have declined
to watch our kids or who have made statements that we'd expect from
fussy old ladies at the grocery store. (For me, it's always the old
ladies, and it's always at the store.) So a family babysitter isn't
a given, either.
But however it happens, our imaginary mom finds a way to go see
The Change-Up. She's there, sitting in the dark, laughing at the movie,
enjoying herself and pushing down the guilt, that feeling of abandonment
that we feel when we dare to spend time doing something for ourselves.
Perfectly reasonable, this time away, yet it's hard not to feel as if
we've left our child unprotected somehow.
That feeling of leaving her child undefended suddenly swells when
she hears it. "This one looks a little Downsy." Our imaginary mom
is suddenly confronted with a room full of people, laughing right along
with famous faces on the screen, in a multi-million dollar production
worked on by thousands of people, approved by studio executives, writers,
actors. All those cinema professionals, and none of them, NOT ONE,
ever said "You know, we're making fun of purely innocent, absolutely
blameless people here. We're making a shitty joke about people with
disabilities, people who are brothers and sisters and sons and daughters
of the moviegoers who are going to pay money to see this film. That
strikes me as a dick move. Maybe we shouldn't do this."
Because this simple recognition of the absence of basic human dignity
has not occurred to any of the decision-makers of this giant Hollywood
production, our imagined mother sits alone in the dark, and she understands
all over again, as if she could ever really forget, that a large segment
of society, of the people she walks with and works with and attends church
with right alongside her child, this chunk of society finds humor in her
child's disability. They think her family's pain is appropriate as a
punchline. This mom was right here with them, and does that make her
complicit? She thinks maybe it does. Maybe she gets up and leaves the
theater in the middle of the movie. Maybe she goes home to her child,
feeling more than ever that her place is here, not out there with this
great invisible THEM, the ones who will always place her and her child
and her family apart.
But if people laughed, I suppose it works out okay when you do the
studio executive math.
Again, I'm not asking you not to engage in this kind of humor. It's your
soul, after all. You're the one who has to figure out what you're willing
to do for a laugh, to fit in with the cool kids, and still sleep at night.
But here's what I would like for you to do, if you're asking, which you're
probably not.
If I ask you to close your eyes and imagine the kind of person who would
casually use the word "nigger" to describe another human being, there might
be some variation of the character that any one of you would build in your
imagination, but I seriously doubt it would be someone you'd admire.
I don't think you'd create the mental image of a person you'd trust your
kids with, and I certainly don't think you'd imagine yourself.
When the greater part of society reaches the point where that exercise of
the imagination would have the same result with the word "retard", we'll
be on our way. That's what I'd like. It really is exactly that simple.
And "downsy"? That's vile. If you laughed at that, please go live in a
hut somewhere, far far away from actual human people.
by Rob Rummel-Hudson at 12:57 AM
31 for 21: Day 10
Happy Thanksgiving everyone. What a great weekend had wonderful weather and a great day of family fun....Lots to be thankful for...
My little peanut Kayde
I am truely greatful for my 3 children. I have been blessed with them, an love them to the moom an back....
My Sweetface Milynn
My Boo- bear Tay
I am truely greatful for my 3 children. I have been blessed with them, an love them to the moom an back....
31 for 21 Day 9
What a great story....
Interview: "Down Syndrome is not a Disease, but Another Personal Characteristic"
An interview by Digital Solidarity (Solidaridad Digital) with Pablo Pineda, Spain
Pablo Pineda is the first person with Down Syndrome to obtain a major degree from a regular university on Spain. Not quite satisfied with such an achievement, he is currently studying educational psychology, while working at the municipality of Málaga, Spain.
His success has been accompanied by constant struggle against prejudice, particularly that surrounding Down syndrome, not a rose garden. Pablo Pineda told us that this type of disability is not a disease, but: "another personal characteristic."
During a recent "Documentos TV", a program of Spanish Television (Televisión Española), Pablo Pineda demonstrated how his disability did not limit him from conducting a regular life. Following are highlights from the interview.
Was it very hard for you being in the university?
Yes, it has been very hard to confront the existing prejudice regarding Down Syndrome and at the same time to deal with the academic demands of higher education. Yet these challenges have also been gratifying.
What prejudices exist around Down syndrome?
First I do not consider that Down Syndrome is a disease. For me it is a personal characteristic. I am fine and healthy. We must not be treated as sick. There are other prejudices and you could write a book about them. There are reactions like pity, the misconception that we are not intelligent, and a long list of social and moral incorrect misinterpretations. Fortunately, we are overcoming some misconceptions. I am just doing my part and demonstrating that I am as competent as anyone.
Do you know if the situation of persons with Down syndrome is better in other countries?
Italy is the only European country I know of where things are better for persons with Down syndrome. This has to do with the democratic tradition of that country. The disability issues have been considered there for a long time. As for Spain, with a recent democratic history, disability issues are now being addressed, and in general, things are not bad. We can say that Spain and Italy are the leading countries in this field. That is good, yet there is a lot to be done.
How do you get along with your classmates and teachers?
There was a surprise that was overcome: nobody expects to have a person with Down syndrome as a classmate, and after that my communication with the rest of the students was fine, and soon I made friends in all the classes. I found old companions in the education psychology classes and that was good. As for the teachers I am just one more, since I do not need anything special. They teach the lessons and I take notes.
What do you like most about the university?
Without doubt the best things are sharing with my classmates and participating in all the activities. I enjoy independence. Anyone attending a university campus knows that you do what you want, no one is controlling you. Being at the Institute emphasizes this sense of liberty.
What would you like to do in the future?
I want to work. Where... we will see. As everybody else I want to work in my field, in the area of education.
What message would you like to send to society?
I would like to become an example. I want to demonstrate that if one puts into work whatever one is able, you can do what you want. But beside what I was able to achieve, I also expect society to do its part. I do not want this to be a one way effort. This is a start of success and shows people that we are as competent as the rest. If you are the one who is setting up the barriers, you are then destroying possibilities for others. And, on the other hand it is essential for society to understand all of these things
Interview: "Down Syndrome is not a Disease, but Another Personal Characteristic"
An interview by Digital Solidarity (Solidaridad Digital) with Pablo Pineda, Spain
Pablo Pineda is the first person with Down Syndrome to obtain a major degree from a regular university on Spain. Not quite satisfied with such an achievement, he is currently studying educational psychology, while working at the municipality of Málaga, Spain.
His success has been accompanied by constant struggle against prejudice, particularly that surrounding Down syndrome, not a rose garden. Pablo Pineda told us that this type of disability is not a disease, but: "another personal characteristic."
During a recent "Documentos TV", a program of Spanish Television (Televisión Española), Pablo Pineda demonstrated how his disability did not limit him from conducting a regular life. Following are highlights from the interview.
Was it very hard for you being in the university?
Yes, it has been very hard to confront the existing prejudice regarding Down Syndrome and at the same time to deal with the academic demands of higher education. Yet these challenges have also been gratifying.
What prejudices exist around Down syndrome?
First I do not consider that Down Syndrome is a disease. For me it is a personal characteristic. I am fine and healthy. We must not be treated as sick. There are other prejudices and you could write a book about them. There are reactions like pity, the misconception that we are not intelligent, and a long list of social and moral incorrect misinterpretations. Fortunately, we are overcoming some misconceptions. I am just doing my part and demonstrating that I am as competent as anyone.
Do you know if the situation of persons with Down syndrome is better in other countries?
Italy is the only European country I know of where things are better for persons with Down syndrome. This has to do with the democratic tradition of that country. The disability issues have been considered there for a long time. As for Spain, with a recent democratic history, disability issues are now being addressed, and in general, things are not bad. We can say that Spain and Italy are the leading countries in this field. That is good, yet there is a lot to be done.
How do you get along with your classmates and teachers?
There was a surprise that was overcome: nobody expects to have a person with Down syndrome as a classmate, and after that my communication with the rest of the students was fine, and soon I made friends in all the classes. I found old companions in the education psychology classes and that was good. As for the teachers I am just one more, since I do not need anything special. They teach the lessons and I take notes.
What do you like most about the university?
Without doubt the best things are sharing with my classmates and participating in all the activities. I enjoy independence. Anyone attending a university campus knows that you do what you want, no one is controlling you. Being at the Institute emphasizes this sense of liberty.
What would you like to do in the future?
I want to work. Where... we will see. As everybody else I want to work in my field, in the area of education.
What message would you like to send to society?
I would like to become an example. I want to demonstrate that if one puts into work whatever one is able, you can do what you want. But beside what I was able to achieve, I also expect society to do its part. I do not want this to be a one way effort. This is a start of success and shows people that we are as competent as the rest. If you are the one who is setting up the barriers, you are then destroying possibilities for others. And, on the other hand it is essential for society to understand all of these things
31 for 21 Day 8
sorry as I am few days behind now long weekend an being sick an sick lil girl but here is my attempt to catch up. Saw this article an thought I would share.
Down Syndrome Research Hub Takes Flight
Families, researchers and advocacy organizations are joining forces with the National Institutes of Health on a new consortium to further Down syndrome research.
The group, established in late September, will meet two to three times annually to discuss the current state of medical and behavioral research on the chromosomal disorder, federal officials say.
Most significantly, the consortium will focus on implementing the NIH Down syndrome research plan, with sets goals for study of the developmental disability.
“The consortium will allow NIH to inform the Down syndrome community of advances in the field, ongoing studies and potential avenues for future research,” said Yvonne Maddox, deputy director of the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development, which is heading up the new cooperative. “In turn, those who work in Down syndrome research and patient care can share their experiences and ideas for potential research opportunities with NIH.”
Individuals with Down syndrome in addition to family members, representatives of leading Down syndrome and pediatric groups as well as members of the NIH Down Syndrome Working group will be included, officials said.
Bringing these stakeholders together, Maddox indicated, will allow those in the field to exchange ideas and minimize duplication of research efforts.
The new Down syndrome consortium bares some resemblance to the Interagency Autism Coordinating Committee, or IACC, an advisory committee established by Congress in 2006 that’s tasked with establishing federal autism research priorities. However, the Down syndrome group will not have the same level of authority.
Down syndrome advocates have long questioned a lack of funding for research on the condition. The NIH allocated $28 million to study Down syndrome last year, $6 million of which came from economic stimulus efforts. Meanwhile, more than three times as much went toward cystic fibrosis research, even though that condition affects just 30,000 Americans compared to some 400,000 with Down syndrome.
This summer, U.S. Rep. Cathy McMorris Rodgers, R-Wash., whose son has Down syndrome, introduced legislation designed to address the inequity by increasing federal funding for study of the condition. But so far, the bills have attracted little attention from Congress.
The group, established in late September, will meet two to three times annually to discuss the current state of medical and behavioral research on the chromosomal disorder, federal officials say.
Most significantly, the consortium will focus on implementing the NIH Down syndrome research plan, with sets goals for study of the developmental disability.
“The consortium will allow NIH to inform the Down syndrome community of advances in the field, ongoing studies and potential avenues for future research,” said Yvonne Maddox, deputy director of the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development, which is heading up the new cooperative. “In turn, those who work in Down syndrome research and patient care can share their experiences and ideas for potential research opportunities with NIH.”
Individuals with Down syndrome in addition to family members, representatives of leading Down syndrome and pediatric groups as well as members of the NIH Down Syndrome Working group will be included, officials said.
Bringing these stakeholders together, Maddox indicated, will allow those in the field to exchange ideas and minimize duplication of research efforts.
The new Down syndrome consortium bares some resemblance to the Interagency Autism Coordinating Committee, or IACC, an advisory committee established by Congress in 2006 that’s tasked with establishing federal autism research priorities. However, the Down syndrome group will not have the same level of authority.
Down syndrome advocates have long questioned a lack of funding for research on the condition. The NIH allocated $28 million to study Down syndrome last year, $6 million of which came from economic stimulus efforts. Meanwhile, more than three times as much went toward cystic fibrosis research, even though that condition affects just 30,000 Americans compared to some 400,000 with Down syndrome.
This summer, U.S. Rep. Cathy McMorris Rodgers, R-Wash., whose son has Down syndrome, introduced legislation designed to address the inequity by increasing federal funding for study of the condition. But so far, the bills have attracted little attention from Congress.
Friday, October 7, 2011
31 for 21: Day 7- Photo Friday
Thursday, October 6, 2011
31 for 21: Day 6- One Thing I Love about Down Syndrome
Uhmmm how in the world do i pick one thing...Have you seen my son..He is perfectly overly handsome. I would have to say its that i have 47 pieces to love that made him that much cuter an adroable, An has shown me a different but wonderful way of life filled with great an amazing ppl an families.
Wednesday, October 5, 2011
31 for 21:Day 5- Is he really that different??
1. Born 3lbs @ 30 weeks gestation ( now 14 lbs last weigh in @ 5 months corrected age). Puts him in the 50th% on DS growth chart.
2. No health issues ( feeewww we have been lucky)
3. Is a lil flirt already with the ladies.. lol
4. Loves his bath
5. Is a thumb, finger an whole fist sucker
6. Can roll from belly to back both ways.
7. Those tiny lil feet are his new long lost friends.. Tells them some pretty serious stories.
8. Is a true boob greedy lil man. And I'm proud that he is
9. Likes to be tickled under his chin an in his thighs.
10. The most beautiful blue almond shaped eyes .
11. Looks like big sis and daddy.
12. Has a smile that melts my heart over and over.
13. Is a nosey lil parker.
14. Has single crease across left hand.
15. Does not like his car seat.
16. Is adored by big bro an sis.
17. As of yesterday he can pass toy rings an rattles from one hand to the other. Yay!!!!
18. Has the cutest lil protruding tongue.
19. Likes to be sung and read to.
20. Enjoys music.
21. Has a extra chromosome 21.that in my eyes only makes him even cuter.
My son is a baby like any other baby, just on a different path, a path that has shown me to slow down and enjoy. So we may have to work a little harder at things but it makes it that much more worth it.
2. No health issues ( feeewww we have been lucky)
3. Is a lil flirt already with the ladies.. lol
4. Loves his bath
5. Is a thumb, finger an whole fist sucker
6. Can roll from belly to back both ways.
7. Those tiny lil feet are his new long lost friends.. Tells them some pretty serious stories.
8. Is a true boob greedy lil man. And I'm proud that he is
9. Likes to be tickled under his chin an in his thighs.
10. The most beautiful blue almond shaped eyes .
11. Looks like big sis and daddy.
12. Has a smile that melts my heart over and over.
13. Is a nosey lil parker.
14. Has single crease across left hand.
15. Does not like his car seat.
16. Is adored by big bro an sis.
17. As of yesterday he can pass toy rings an rattles from one hand to the other. Yay!!!!
18. Has the cutest lil protruding tongue.
19. Likes to be sung and read to.
20. Enjoys music.
21. Has a extra chromosome 21.that in my eyes only makes him even cuter.
My son is a baby like any other baby, just on a different path, a path that has shown me to slow down and enjoy. So we may have to work a little harder at things but it makes it that much more worth it.
31 for 21: Day 4 - Not Just Women 35+
So I remember thinking that only older women 35+ have great risk of having a child with Down Syndrome. Can't remember or if ever heard of young women having DS children. Maybe it's just me an I was truly that uneducated.. Wow!! From what I have noticed is there are alot of young women out there. I wonder how long till they change their sastistics??? Would love to hear from some of you's on your age,
Pls comment .Feel free to add pic of your LO I think its time satstics should change.
I was 27
Pls comment .Feel free to add pic of your LO I think its time satstics should change.
I was 27
Monday, October 3, 2011
31 for 21: Day 3 - Kayde's Kissing Hand!!!
"Palmar" crease (single line across palm of hand) just 1 feature of Down Syndrome.
Sunday, October 2, 2011
Saturday, October 1, 2011
31 for 21: Day 1 - Welcome To Holland
For my first post I would like to share, "The Welcome To Holland" poem by Emily Perl Kingsley. I found it very inspiring an comforting in those early days. I remember walking down the hallway leaving the NICU, the day after we found out Kayde had Down Syndrome, Feeling so numb an lost an unsure about the future. On the wall was a message board for parents about NICU/Premmie Support Groups, Life,Care and Info and then there it was. I stood there crying an reading it over an over. An she couldn't have explained it any better.
Welcome To Holland
I am often asked to describe the experience
of raising a child with a disability - to
try to help people who have not shared that
unique experience to understand it, to
imagine how it would feel. It's like this...
When you're going to have a baby,
it's like planning a fabulous
vacation trip - to Italy.
You buy a bunch of guide books
and make your wonderful plans.
The coliseum. The Michelangelo David.
The gondolas in Venice. You may learn
some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day
finally arrives. You pack your bags and off
you go. Several hours later, the plane lands.
The stewardess comes in and says,
"Welcome To Holland".
"Holland?!?" you say, "What do you mean
"Holland"??? I signed up for Italy! I'm
supposed to be in Italy. All my life
I've dreamed of going to Italy"
But there's been a change in the flight plan.
They've landed in Holland and there you
must stay.
The important thing is that they haven't
taken you to a horrible, disgusting, filthy
place, full of pestilence, famine and disease.
It's just a different place.
So you must go and buy new guide
books. And you must learn a whole new
language. And you will meet a whole new
group of people you would never have met.
It's just a different place. It's slower-paced
than Italy, less flashy than Italy. But after
you've been there for a while and you catch
your breath, you look around…and you
begin to notice that Holland has windmills,
Holland has tulips. Holland even has
Rembrandts.
But everyone you know is busy coming and
going from Italy...and they're all bragging
about what a wonderful time they had there.
And for the rest of your life, you will say
"Yes that's where I was supposed to go.
That's what I had planned".
And the pain of that will never, ever, ever,
ever go away...because the loss of that
dream is a very significant loss.
But...if you spend your life mourning the
fact that you didn't get to Italy, you may
never be free to enjoy the very special, the
very lovely things...about Holland.
© 1987, by Emily Perl Kingsley. All rights reserved.
Reprinted with permission of the author.
He is my Holland!!!
Welcome To Holland
I am often asked to describe the experience
of raising a child with a disability - to
try to help people who have not shared that
unique experience to understand it, to
imagine how it would feel. It's like this...
When you're going to have a baby,
it's like planning a fabulous
vacation trip - to Italy.
You buy a bunch of guide books
and make your wonderful plans.
The coliseum. The Michelangelo David.
The gondolas in Venice. You may learn
some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day
finally arrives. You pack your bags and off
you go. Several hours later, the plane lands.
The stewardess comes in and says,
"Welcome To Holland".
"Holland?!?" you say, "What do you mean
"Holland"??? I signed up for Italy! I'm
supposed to be in Italy. All my life
I've dreamed of going to Italy"
But there's been a change in the flight plan.
They've landed in Holland and there you
must stay.
The important thing is that they haven't
taken you to a horrible, disgusting, filthy
place, full of pestilence, famine and disease.
It's just a different place.
So you must go and buy new guide
books. And you must learn a whole new
language. And you will meet a whole new
group of people you would never have met.
It's just a different place. It's slower-paced
than Italy, less flashy than Italy. But after
you've been there for a while and you catch
your breath, you look around…and you
begin to notice that Holland has windmills,
Holland has tulips. Holland even has
Rembrandts.
But everyone you know is busy coming and
going from Italy...and they're all bragging
about what a wonderful time they had there.
And for the rest of your life, you will say
"Yes that's where I was supposed to go.
That's what I had planned".
And the pain of that will never, ever, ever,
ever go away...because the loss of that
dream is a very significant loss.
But...if you spend your life mourning the
fact that you didn't get to Italy, you may
never be free to enjoy the very special, the
very lovely things...about Holland.
© 1987, by Emily Perl Kingsley. All rights reserved.
Reprinted with permission of the author.
He is my Holland!!!
Subscribe to:
Posts (Atom)