Today is World Down Syndrome Day! I’m sure most of you already knew this as I’m sure your employers gave you the day off right?…no?…jerks. So what’s the purpose of World Down Syndrome Day you ask? The purpose is to raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.
As a parent of a 3-month old daughter named Britta, who has Down Syndrome, I wanted to take a moment and do my part to raise awareness and inform my small circle of influence a little bit about Down syndrome.
Questions I have been asked the most about my daughter are:
What is Down syndrome? It is a genetic condition resulting in an extra chromosome. Instead of having two copies of the twenty first chromosome, there is three (3-21st chromosomes, march 21 or 3-21 hence the day chosen for World Down Syndrome Day…GENIUS!). So my Britta has 47 chromosomes in her cells instead of the usual 46. The frequency of Down syndrome in the United States is about 1 in 700 births. It is one of the most common congenital disorders occurring in all races, ethnic groups, socio-economic classes and nationalities.
How will having Down syndrome affect Britta? We don’t know. Down syndrome is a spectral disorder meaning the it affects people differently ranging from mild to severe. She will be delayed, to what extent we don’t know. Physically she will be affected, to what extent we do not know. Some people who have Down syndrome graduate from High School and in some cases get college degrees; others have a difficult time learning the very basics in speech and motor skills. The range is huge!
She obviously has many of the physical traits that people associate with Down syndrome, namely the almond shaped eyes, flatter facial features, protruding tongue, etc.
Health concerns are a big deal…there is quite the laundry list of “increased risk of” when it comes to people with Down syndrome. Heart defects, hearing loss, vision problems, Autism , Alzheimer’s, childhood leukemia, are just a few of the things that people with Down Syndrome have an increased risk of. This doesn’t mean that Britta is guaranteed to have these issues, there is just an increased likelihood compared to the general population. At this moment in time Britta’s health is really good, she was born with a small hole in her heart that has apparently closed based on her latest checkup. Her growth and weight are doing great.
Did you know before you gave birth that she had Down syndrome? Nope, I chose not to have the test done. She didn’t show any “soft indicators” that she might have Down syndrome so it was a complete surprise. If given the choice I would do it the same way. There can be some benefit to having the test done particularly if you live in a place that doesn’t have a NICU, as many newborns with Down syndrome have some health problems that require immediate attention,St George has a very good NICU and we didn’t see any need.
Were you sad when you found out she had Down syndrome? Odd question I get but Yes. I don’t know too many people who would check the Down syndrome box on their baby’s wish list, so finding out that our daughter might have Down syndrome (it wasn’t confirmed that she had Down syndrome until a week later) was hard. It’s like you’ve been expecting this very particular cake for your birthday and you are dying to eat that cake for months then, at your birthday party somebody brings out pie. So you’re mourning the loss of the cake but at the same time you are loving this pie, then you feel guilty about mourning the cake but wow, this is some really good pie and then as you get more into the pie you realize that parts of the cake that you thought were missing are actually in the pie!!! So maybe I took the metaphor a little too far with the last part but hopefully you get the point It really is quite the emotional roller coaster but in the end we couldn’t be happier with our little pie.
Could you have prevented Down syndrome during your pregnancy? NO…the error in cell division happens at conception.
How has your husband dealt with the diagnosis? Both my girls have got their Dad wrapped around their little fingers. He is so involved in every aspect of Britta’s care. He comes to all her early intervention care meetings and appointments. He has taken on the role of researcher and technician so I can focus on being Mom. I have fallen head over heels in love with him because of the extraordinary care and love he shows our daughter.
What is your biggest pet peeve? I premise this by saying that I know that everyone I talk to is well intentioned and I do not take offense to anything. However if I were Queen of the world my magic wand would help people understand that:
#1) People with Down syndrome do not come off conveyer belts. There is no such thing as a Down Syndrome personality. Some people with Down Syndrome are seemingly perpetually happy and outgoing while others are more introverted and “prickly” as one mother described her daughter. Their range of likes, interests, personality traits, abilities are as varied as everybody else. People sometimes act as though they know what my daughter will be like when she gets older and she’s only 3-months old. Down syndrome is only one ingredient in many that will make up who she is.
#2) We should really stop using the “R” word. I understand that when most of us use that word we do not intend to disrespect people who may have a disability. But for so long this word has been used by cowards to bully, belittle and make fun a group of people, many of whom do not have the skills to adequately defend themselves, it should just be retired.
#3) I love it when people use “people first” language. I wish people would not call her a “downs baby” or “downy” or say things like “oh yea my friends daughter has a couple of down syndromes”. People first language is when somebody says, "my neighbor has Down syndrome" as opposed to, "my Down syndrome neighbor". I understand this may sound silly to some. Nobody told Van Morrison his song Brown Eyed Girl should be changed to Girl with Brown Eyes (although I think it’s catchier…go on sing it in your head), but girls who have brown eyes don’t have the stigmatisms placed upon them that people with Down Syndrome have. It’s a way to emphasize the person first and condition second.
I hope that didn’t get too preachy.
What are your hopes for Britta? I have very high hopes and am so profoundly grateful to all those who have worked tirelessly before me to make the world a better place for people with disabilities. In the not too distant past the recommended thing to do when somebody found out their baby had Down syndrome was to place them in institutions to be raised by staff who would “control” or “maintain” them. Oh how far we have come, even in the last 30 years. Most people with Down syndrome are raised at home, go to school, have careers, enjoy hobbies and friends. Many are now finding love and getting married. Their life expectancy has gone somewhere in the20’s to 60’s. This is due to medical advancements and a better understanding of how that 3rd and 21st chromosome affects the body. We want Britta to have all the opportunities she can, to achieve anything she wants to. The same goes for the rest of our children.
Are you finding lots of support? Yes! Britta is surrounded by amazing family, many of whom have experience working with people with disabilities, who absolutely love her to death. Our neighborhood has been extremely supportive and wonderful. It’s hard to imagine a person being born into a better, more supportive situation. Britta and our family are very fortunate to be surrounded by so many wonderful people.
What can we do? You can go to http://www.ndss.org/ to learn more about Down syndrome and how we can better support their effort for a better more inclusive world for those who have Down syndrome.
Thanks everyone for your reading this epistle …even if you just skimmed it.
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Britta in the hospital
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Britta Home
As a parent of a 3-month old daughter named Britta, who has Down Syndrome, I wanted to take a moment and do my part to raise awareness and inform my small circle of influence a little bit about Down syndrome.
Questions I have been asked the most about my daughter are:
What is Down syndrome? It is a genetic condition resulting in an extra chromosome. Instead of having two copies of the twenty first chromosome, there is three (3-21st chromosomes, march 21 or 3-21 hence the day chosen for World Down Syndrome Day…GENIUS!). So my Britta has 47 chromosomes in her cells instead of the usual 46. The frequency of Down syndrome in the United States is about 1 in 700 births. It is one of the most common congenital disorders occurring in all races, ethnic groups, socio-economic classes and nationalities.
How will having Down syndrome affect Britta? We don’t know. Down syndrome is a spectral disorder meaning the it affects people differently ranging from mild to severe. She will be delayed, to what extent we don’t know. Physically she will be affected, to what extent we do not know. Some people who have Down syndrome graduate from High School and in some cases get college degrees; others have a difficult time learning the very basics in speech and motor skills. The range is huge!
She obviously has many of the physical traits that people associate with Down syndrome, namely the almond shaped eyes, flatter facial features, protruding tongue, etc.
Health concerns are a big deal…there is quite the laundry list of “increased risk of” when it comes to people with Down syndrome. Heart defects, hearing loss, vision problems, Autism , Alzheimer’s, childhood leukemia, are just a few of the things that people with Down Syndrome have an increased risk of. This doesn’t mean that Britta is guaranteed to have these issues, there is just an increased likelihood compared to the general population. At this moment in time Britta’s health is really good, she was born with a small hole in her heart that has apparently closed based on her latest checkup. Her growth and weight are doing great.
Did you know before you gave birth that she had Down syndrome? Nope, I chose not to have the test done. She didn’t show any “soft indicators” that she might have Down syndrome so it was a complete surprise. If given the choice I would do it the same way. There can be some benefit to having the test done particularly if you live in a place that doesn’t have a NICU, as many newborns with Down syndrome have some health problems that require immediate attention,St George has a very good NICU and we didn’t see any need.
Were you sad when you found out she had Down syndrome? Odd question I get but Yes. I don’t know too many people who would check the Down syndrome box on their baby’s wish list, so finding out that our daughter might have Down syndrome (it wasn’t confirmed that she had Down syndrome until a week later) was hard. It’s like you’ve been expecting this very particular cake for your birthday and you are dying to eat that cake for months then, at your birthday party somebody brings out pie. So you’re mourning the loss of the cake but at the same time you are loving this pie, then you feel guilty about mourning the cake but wow, this is some really good pie and then as you get more into the pie you realize that parts of the cake that you thought were missing are actually in the pie!!! So maybe I took the metaphor a little too far with the last part but hopefully you get the point It really is quite the emotional roller coaster but in the end we couldn’t be happier with our little pie.
Could you have prevented Down syndrome during your pregnancy? NO…the error in cell division happens at conception.
How has your husband dealt with the diagnosis? Both my girls have got their Dad wrapped around their little fingers. He is so involved in every aspect of Britta’s care. He comes to all her early intervention care meetings and appointments. He has taken on the role of researcher and technician so I can focus on being Mom. I have fallen head over heels in love with him because of the extraordinary care and love he shows our daughter.
What is your biggest pet peeve? I premise this by saying that I know that everyone I talk to is well intentioned and I do not take offense to anything. However if I were Queen of the world my magic wand would help people understand that:
#1) People with Down syndrome do not come off conveyer belts. There is no such thing as a Down Syndrome personality. Some people with Down Syndrome are seemingly perpetually happy and outgoing while others are more introverted and “prickly” as one mother described her daughter. Their range of likes, interests, personality traits, abilities are as varied as everybody else. People sometimes act as though they know what my daughter will be like when she gets older and she’s only 3-months old. Down syndrome is only one ingredient in many that will make up who she is.
#2) We should really stop using the “R” word. I understand that when most of us use that word we do not intend to disrespect people who may have a disability. But for so long this word has been used by cowards to bully, belittle and make fun a group of people, many of whom do not have the skills to adequately defend themselves, it should just be retired.
#3) I love it when people use “people first” language. I wish people would not call her a “downs baby” or “downy” or say things like “oh yea my friends daughter has a couple of down syndromes”. People first language is when somebody says, "my neighbor has Down syndrome" as opposed to, "my Down syndrome neighbor". I understand this may sound silly to some. Nobody told Van Morrison his song Brown Eyed Girl should be changed to Girl with Brown Eyes (although I think it’s catchier…go on sing it in your head), but girls who have brown eyes don’t have the stigmatisms placed upon them that people with Down Syndrome have. It’s a way to emphasize the person first and condition second.
I hope that didn’t get too preachy.
What are your hopes for Britta? I have very high hopes and am so profoundly grateful to all those who have worked tirelessly before me to make the world a better place for people with disabilities. In the not too distant past the recommended thing to do when somebody found out their baby had Down syndrome was to place them in institutions to be raised by staff who would “control” or “maintain” them. Oh how far we have come, even in the last 30 years. Most people with Down syndrome are raised at home, go to school, have careers, enjoy hobbies and friends. Many are now finding love and getting married. Their life expectancy has gone somewhere in the20’s to 60’s. This is due to medical advancements and a better understanding of how that 3rd and 21st chromosome affects the body. We want Britta to have all the opportunities she can, to achieve anything she wants to. The same goes for the rest of our children.
Are you finding lots of support? Yes! Britta is surrounded by amazing family, many of whom have experience working with people with disabilities, who absolutely love her to death. Our neighborhood has been extremely supportive and wonderful. It’s hard to imagine a person being born into a better, more supportive situation. Britta and our family are very fortunate to be surrounded by so many wonderful people.
What can we do? You can go to http://www.ndss.org/ to learn more about Down syndrome and how we can better support their effort for a better more inclusive world for those who have Down syndrome.
Thanks everyone for your reading this epistle …even if you just skimmed it.
