I learned so much in the past week! And I realize I am still ignorant, and have much more to learn. But here are some things I have learned:
One in every 691 babies in the United States is born with Down syndrome. I was shocked! I would have guessed maybe one in every 10,000??? Approximately 6,000 babies with Down syndrome are born each year in the U.S. Wow!
There are 3 types of Down syndrome, and we don't know yet which type Baby J. has. There is Trisomy 21, the most prevalent type, representing 95% of the population with Down syndrome. There is Mosaicism, representing 1% of the population with Down syndrome. And finally, there is Translocation, representing about 4% of the population with Down syndrome. You can read about all 3 types by going to http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/. This is a very informative website.
If you don't want to get all medically technical, here are some things I've learned--from my daughter and from some of the wonderful blogs I have discovered.
First, and very important, it is most respectful to refer to a person with Down syndrome and not a Down syndrome person. In other words, the PERSON comes first and is most important...the condition or disability is second and less important. Gosh! That makes so much sense. Why did I never think of this before?
Second, and equally important, it is not respectful to use the word "retard," or "retarded." I just had a really hard time even typing that. But for some of the population that grew up in the 40's, 50's and 60's, this would be acceptable language. Things have changed, folks! It's appropriate and necessary to change, too. Children with Down syndrome are not referred to today as "mentally retarded." They are children with learning disabilities or children with developmental delays. There is just so much derogatory emotion associated with the terms "mentally retarded." I know it will take people time to learn this, but it's important. It matters to us. It matters to me. It will matter to Baby J.
In school, at least in Florida, the language and terminology has also changed. What used to be referred to as "special education," went through a transition to be called "exceptional education" (including children with disabilities AND children with learning gifts) and finally is called today "students with disabilities." It's an interesting transition and not the same everywhere. In some places non-mainstreamed students are still referred to as being in "special education."
Obviously, I know there will be "misspeaks." I will probably be the first to make them. That is just going to happen. What I am sad about is the few times I've heard about when people, often young people, say things out of ignorance and a little meanness. Watch out! I won't guarantee gracious behavior on my part in return!
Finally, if you are really interested and want to see and read some absolutely beautiful stories, start following these two Instagram accounts: hillaryschu and gabe.the.babe.and.co. Both moms have little boys with Down syndrome--Leo and Gabe. I am in love with these families and have learned so much from them in just one week! Amazing! There is also a great blog called Noah's Dad. You can follow at http://noahsdad.com. This is also a beautiful spot to learn about children with Down syndrome.
So that's what I learned today. What have you learned?
One in every 691 babies in the United States is born with Down syndrome. I was shocked! I would have guessed maybe one in every 10,000??? Approximately 6,000 babies with Down syndrome are born each year in the U.S. Wow!
There are 3 types of Down syndrome, and we don't know yet which type Baby J. has. There is Trisomy 21, the most prevalent type, representing 95% of the population with Down syndrome. There is Mosaicism, representing 1% of the population with Down syndrome. And finally, there is Translocation, representing about 4% of the population with Down syndrome. You can read about all 3 types by going to http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/. This is a very informative website.
If you don't want to get all medically technical, here are some things I've learned--from my daughter and from some of the wonderful blogs I have discovered.
First, and very important, it is most respectful to refer to a person with Down syndrome and not a Down syndrome person. In other words, the PERSON comes first and is most important...the condition or disability is second and less important. Gosh! That makes so much sense. Why did I never think of this before?
Second, and equally important, it is not respectful to use the word "retard," or "retarded." I just had a really hard time even typing that. But for some of the population that grew up in the 40's, 50's and 60's, this would be acceptable language. Things have changed, folks! It's appropriate and necessary to change, too. Children with Down syndrome are not referred to today as "mentally retarded." They are children with learning disabilities or children with developmental delays. There is just so much derogatory emotion associated with the terms "mentally retarded." I know it will take people time to learn this, but it's important. It matters to us. It matters to me. It will matter to Baby J.
In school, at least in Florida, the language and terminology has also changed. What used to be referred to as "special education," went through a transition to be called "exceptional education" (including children with disabilities AND children with learning gifts) and finally is called today "students with disabilities." It's an interesting transition and not the same everywhere. In some places non-mainstreamed students are still referred to as being in "special education."
Obviously, I know there will be "misspeaks." I will probably be the first to make them. That is just going to happen. What I am sad about is the few times I've heard about when people, often young people, say things out of ignorance and a little meanness. Watch out! I won't guarantee gracious behavior on my part in return!
Finally, if you are really interested and want to see and read some absolutely beautiful stories, start following these two Instagram accounts: hillaryschu and gabe.the.babe.and.co. Both moms have little boys with Down syndrome--Leo and Gabe. I am in love with these families and have learned so much from them in just one week! Amazing! There is also a great blog called Noah's Dad. You can follow at http://noahsdad.com. This is also a beautiful spot to learn about children with Down syndrome.
So that's what I learned today. What have you learned?
love noah's dad'd blog. this is a great story about a boy who wrote to scholastic to make a change regarding wording in a children's dictionary and they did :) https://www.youtube.com/watch?v=FgPUAL67-qY
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