Sunday, October 31, 2010
Great question! In the past, it was believed that males with Down syndrome were unable to have babies. Basically they believed them to be infertile. But let's be realistic, people with Down syndrome have only been "allowed" to date an marry as of recently. I say "allowed" because somehow we took away their right to love and be loved in claims that their intellectual IQ made them unfit to marry, yet, what they know to do best is love.
Now a days, individuals with Down syndrome are dating and getting married. Some of them are even having babies. However, the choice of having babies continues to be controversial, and a hard choice to make, as it usually involves family beyond the couple. Many couples choose not to become parents because they are unsure they are able to parent a child without help.
But the questions is, can they have babies? And will their babies have Down syndrome too?
In order to understand what happens when sperm and egg of people with Down syndrome unite, we need to look at the basics of cell reproduction.
There are two ways in which cells reproduce: meiosis and mitosis.
Mitosis: This is how all cells (except sperm and egg) reproduce themselves.
"A process of asexual reproduction in which the cell divides in two producing a replica, with an equal number of chromosomes in haploid cell."
Meiosis: This is how sperm and cell reproduce.
"A type of cellular reproduction in which the number of chromosomes are reduced by half through the separation of homologous chromosomes in a diploid cell."
We all have 46 chromosomes, therefore, egg and sperm have 23 chromosomes each. When they unite, you get 46 all together (23+23=46)
People with Down syndrome have 47 chromosomes (an extra 21st). Now picture the 47 chromosomes reduced, or divided in half. You get one "half" with 23 chromosomes (or a typical cell) and one with 24 (with the extra 21st chromosome)
The grid bellow, shows you what the chances are for two people with Down syndrome to have babies (assuming that both individuals are fertile and able to procreate).
As you can see, for 2 people with Down syndrome having babies, the chances are as follows:
-25% chance their child will be typical (no Down syndrome)
-50% chance their baby will have Down syndrome
-25% chance there will be no viable pregnancy
Although Down syndrome awareness month is done, if you have any more questions...ask away!
Tuesday, October 26, 2010
At first, I must admit that I was a little frustrated, but now I am thinking maybe God wants a little more of my attention, and "suspending" the plug might be a good thing for me.
During Lent, I took a "break" I limited my on-line activities, realizing that it is sort of an addiction in my life. I am thinking that maybe now I can have some time to do the things I need to do and actually want to do!
I can get working on my book proposals, actually write some more, and clean my house!
I still have a couple of questions to answer for Down syndrome awareness, and as I am able to come to the Library (like today) I will answer those.
Yesterday Nina and I went to Mayo for a Cerebral palsy Clinic Day and I will update as soon as I can. I just have to say that it was a very long day, but I learned so much about Nina, CP, and therapy. There is much to share about our girl.
See you in a few days!
Saturday, October 23, 2010
By EmmaLee McDonald
There once was this purple pumpkin named Pete. Unlike any other pumpkin, Pete was purple. Every fall he hoped he would get picked. But every fall he didn’t get picked, he wondered why. He thought, “Sure I might be purple, but you can still carve me and eat my seeds.” The only thing different was his outside. People would look at him and then laugh. Every pumpkin thought that Pete was the kindest, sweetest pumpkin ever! They also wondered why Pete wasn’t getting picked. Now, Pete was getting older and the farmers said that if Pete didn’t get picked this fall, he would have to be thrown away. Pete didn’t want this to happen, so he hoped this fall would be different. Two days went passed and people only looked at him and laughed. Then, the next day, a little girl with a pink tutu and a tiara looked at Pete and said “I want this one.” Pete was so overjoyed. This girl loved Pete the most. Once this girl carved him, she placed him on her porch. That evening, she saw all of the neighbors on her lawn. Hoping they weren’t making fun of Pete, she ran out. Then, she realized what they were all staring at. It was a light brighter than any she had ever seen, shining from within Pete, without even one candle. It was a light that shown from within. Then, people came from far and wide to see this bright, little pumpkin. Just imagine what the world would have missed if Pete were simply thrown away. Even though people may look different on the outside, true beauty comes from within.
EmmaLee is twelve years old. Amazing, huh?
Leave EmmaLee a comment telling her how much you love Pete the Purple Pumpkin!
Thanks Gillian for sharing this on your blog.
And don't miss the previous post from the day with pictures of my little girls' creations.
Nina of course, wanted to participate. She has a very hard time with coloring and drawing. Tracing is hard! But, she has come a long way since she got home. She had never held a crayon before, and now she tries hard to color and be precise with her pencil strokes. Although I helped her a lot for this creation, you can see that she is getting it, little by little.
Nina's color wheel was phenomenal! She loves to paint, and she had never tried to stay within lines. I know she gets to practice at preschool, but I was so proud of her! She needed help mixing the colors, but she did all the painting, all by herself! No help from mommy!
Friday, October 22, 2010
I learned English as a second language. When I moved to the United States at age 17, I felt confident living life in "English." However, my scholarly English did not know much about slang words, puns, or the fact that the English language is ever changing. Some words, over time, change their meaning.
Some have said we have pushed the limit in what is “politically correct.” But is it? Is it wrong or offensive to use the r-word? Is it really a damaging word?
I want to tell you about our family. I hope after you read this, that you will understand the power of words, and that some words, even when not intended to be harmful, can slowly destroy.
When my daughter Nichole was born, her diagnosis of Down syndrome hung over me like a heavy, wet, blanket. It clung to me. It robbed me from any feelings of love and I wondered if there was a way out. My motherly instinct was nowhere to be found. I went through the motions of holding and nursing (pumping actually) because I had to, not because I wanted to. I cried. I cried several times a day. There was fear in the unknown; there were questions about the future, about our family and my oldest daughter.
Down syndrome. I knew many things about Down syndrome, and I knew of one word that would be used to describe my daughter. It was the R-word. Retarded.
I knew that someday, someone at her school might say to her, “Hey you retard!” With many laughs to follow such a comment. Or we might hear someone explaining her behaviors to another by saying, “She is retarded.”
There was something I knew about the word retard or retarded. It is a word used to describe something or someone that is stupid, ridiculous, or inadequate. It is a word used to make fun of others, to point out their flaws, or to put them down. It is a word used to destroy, to tear down. Was this really a word that would describe my daughter? Was it okay to call her that in claims of it being a "medical" term or condition?
Thankfully, it did not take long for me to discover that my daughter was not what the word "retarded" means. My daughter was and is beautiful. She is not stupid, she is not ridiculous, and she is not inadequate. She has taught me more in her lifetime than I had learned in mine. She has been the greatest teacher I have had. She has inspired me more than anyone else I know. She has changed my life, the lives of our family, and of those that have gotten to know her.
My daughter has the ability to touch hearts and change lives. A quality that cannot be said of all people. She has shown me more love, joy, kindness, gentleness than I had ever known before. Indeed, her life has great meaning, great value, and she has so much more to offer.
And yet, the word “retard” continues to hang over us. Why? Because it is a word that continues to be used in a derogatory way. It hurts. It hurts our family. We fight this word, every day, every single day. We fight this word because everywhere we go, her characteristic features of Down syndrome set her apart. The stereotype that the word “retard” has perpetuated is engrained in our society, and so we fight against it, because she is so much more. She is full of potential, love, and joy.
There are obvious ways in which the r-word is offensive. But when it damages us the most is when it is said in ignorance. The facebook status or the teasing of a friend. It is not meant to be offensive, it is not meant to hurt. But even if it is not said with ill intent, it does. It hurts, it destroys.
My daughter is not stupid, ridiculous or inadequate. A word that has been used to mock people with intellectual disabilities makes othesr like my daughter wake up and face a world that has deemed her unworthy and incapable. Incapable because of a word. A word that is not who she is. She is capable, she has gifts, she has talents.
So next time you hear the R-word, next time if you think you might be about to say the R-word. Please stop and think. Think about my daughter, think about others that like her stand strong against the tide of a word that has labeled them in such a negative way, yet they have so much potential. As her family we stand with her, we stand strong, we fight.
Will you stand with us?
Usually, when someone uses the R-word, I take the time to share with people about our family, and what it means to us to hear people using it in such a way. Most do not know how hurtful it is. Some, do not know how to respond, but understand. And just a few, will dare defend themselves claiming that "educated people" use this word, because it is a medical term and some people act in ways similar to those with intellectual disabilities.
I am an educated person. I have a degree in Psychology. Most important, I am involved in the world of special needs. Every. Single. Day.
So allow me to share with you some recent news. A new law has passed where the term mental retardation will no longer be used in the medical or professional community. It has been removed, as the word has evolved and is now used in a derogatory way. The preferred terminology is now "intellectual disability."
You can click here and read the law passed by Congress.
For now, I am thankful that no official documentation will ever have the R-word when referring to Nichole. She is not a retard, not to what this word has come to mean. She is not stupid, ridiculous, or inadequate. She is simply Nichole, a little girl, with many many gifts, talents, and abilities. Some of which, have changed my life.
Thursday, October 21, 2010
Wednesday, October 20, 2010
My friend Yuri. We have known each other since we were in sixth grade. We were both moving to the same town and ended up in the same room at our middle school when we were taking our acceptance test. She sat in front of me and we really hit it off. The first day of school, in seventh grade, I ran to see the class list and was relieved that we had been placed in the same class. I waited for her by the door and as soon as she walked in I knew I was not alone.
I met Rumi when I was 3 years old. A very long time ago. Our moms were friends, but every morning we greeted each other at school with a frown. Play dates rarely ended well. Then she moved to the US for a few years and came back in third grade. Although I was not a good friend at the beginning, by the end of the year we decided to like each other.
Tuesday, October 19, 2010
Monday, October 18, 2010
Sunday, October 17, 2010
When referring to someone that has Down syndrome, it is important to remember to use People First Language. It communicates that the person is more important than their diagnosis. It means that they are an individual outside of their diagnosis or genetic makeup. Nichole is not Down’s, she HAS Down syndrome. Down syndrome does not define who she is, and she is not the syndrome, she is just Nichole, she has Down syndrome, she has green eyes, and she has dark hair.
HERE you can find a guide of different ways to use people first language.
• Down vs. Down’s - NDSS uses the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome,” as well.
• People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
• Down syndrome is a condition or a syndrome, not a disease.
• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.
• While it is unfortunately clinically acceptable to say “mental retardation,” you should use the more socially acceptable “intellectual disability”. NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.
Saturday, October 16, 2010
The outer part of the iris might have light spots that are called Brushfield spots as shown in the picture bellow.
Neck: Some individuals with Down syndrome (and you can see in Nichole's previous picture to some extent) have a "thicker" neck, or what appears to be an excess of skin on the neck. This is one of the markers for Down syndrome that can be caught in an ultrasound.
Mouth: The mouth and tongue are made up of many muscles. Individuals with Down syndrome have low muscle tone, and therefore, the muscles in the mouth and tongue might be weaker. Contrary to what was believed before, the tongue is not bigger than normal. When the tongue is sticking out, it is a matter of low muscle tone and it can be worked on through oral exercises and speech therapy.
Teeth: Teeth may come in late and in an unusual order. For example, Nichole got her bottom 2 teeth first, followed by a random order (her molars came in before her two top teeth.) For some individuals their teeth might be small, unusually shaped, or out of place.
Hands: Individuals with Down syndrome tend to have shorter and chubbier fingers. As you can see in the picture bellow, many individuals with Down syndrome have just one crease across their palm, called the transverse palmar crease. For some, like for Nichole and the baby from the picture bellow, the pinkie finger appears to be crooked.
Feet: There may be a gap between the big toe and the rest of the toes. There might also be a deep crease on the sole of the foot where the gap is.
You can see Nichole's toe gap in this picture. I absolutely love it! And it is great for flip flops!
Low Muscle Tone: One of the most significant characteristics of Down syndrome is low muscle tone (discussed briefly as we talked about the mouth and tongue) or Hypotonia. Low muscle tone affects all the muscles in the body. A baby may appear "floppy" as shown in the picture bellow. It affects movement, strength, speech, and development. It cannot be cured, however, there are many therapies available to help individuals with Down syndrome improve their muscle tone, such as Speech Therapy, Physical Therapy, and Occupational Therapy.
Hair: Some individuals have thin and straight hair. However, as you can see bellow, Nichole has a head full of beautiful curls.
Friday, October 15, 2010
Thursday, October 14, 2010
- She can say 2 and 3 word sentences that we understand (most of the time) We are sure she can say a lot more than that but there are just many times when we do not understand what she is saying. When we ask to repeat what she said, it sounds exactly the same and we still can only pick up the 3 words here and there of her story.
- She knows shapes, like circle, triangle, square.
- We are not sure if she can count, but she seems to try to count with us. This is also due to not understanding her speech very clearly.
- Nichole knows some letter of the alphabet. Just the other day she surprised me by pointing and saying, "A" and sure enough, there was an "A."
- Nichole can follow two step directions very well.
- She is a little rascal and she knows too well when she is doing something she is not supposed to be doing.
- Nichole is getting better at listening when we are outside. More and more she stops when we tell her too. After our escape artist incident, we have been cracking down on her with this one.
- She is a matching champion! She can match any card to it's matching picture.
- She is trying to jump, and she is getting so close!
- She is very good at imitating and she does fairly well at dance class. But anything we ask her to do, she is willing to try.
- Nichole loves her big sister Ellie.
- She is great at playing pretend. She likes to play doctor, mommy, and Barbie.
- She enjoys playing dolls too, and Barbies are a favorite in our house.
- She loves to color and she is pretty good at it! She does not stay in the lines, but she can cover a hand with color.
- She does fantastic at church with her different activities. She follows along with the songs, doing actions, listens to the stories, and loves it!
- She still gives the best hugs!
- Nichole cannot handle someone being sad, she has to hug them and pat their back. She is too sweet!
- She can climb up and down the stairs on her own, but I am always there because she is not very safe yet.
- She can fed herself and does a phenomenal job at drinking from an open cup. As a matter of fact, she gets an open cup for lunch and dinner.
- She likes to look cute, and she loves looking at herself in the mirror and look at her pictures.
Wednesday, October 13, 2010
Nina was brave and she actually knelled on the floor as she chose her pumpkin. She has some sensory issues (after almost 4 years being locked up in a room with little opportunity to go outside, it is no surprise this girl has some sensory issues) She loved the pumpkins, loved the hay ride! She even sat on the hay! Thanks Barb, for sitting by her and lovingly putting your arm around her.
Ellie chose "the most perfect little pumpkin of all."
Nina was fascinated by the many pumpkins, and she walked a little bit with her walker. Pointing at all the pretty things outside with awe. A day when I was reminded of this simple fun family activity that she would have never had if she did not have a family of her own.
Nichole just loves walking more than looking around, but she did stop to pick up a flower that had fallen from a flower bush and carried it around for the rest of the day.
And since Nina is not as mobile, it is easy to have her pose and take pictures.
There is a hay tunnel, slide, and sand area in this place. Nichole finally got over the "ack!" if the sand on her every time she landed from the slide and decided it would be fun to play in the sand.
And Ellie decided to pose with Nina for one picture. At this point Nichole was not leaving the fun in the sand. So you take what you get when you have 3 little girls.
Tuesday, October 12, 2010
The pride I felt seeing my sister graduate from college yesterday made me dream of the day my girls graduate. I pictured all my girls on that day, decked with their caps and gowns. First Ellie, gracefully receiving her diploma, a beautiful young lady with a heart full of love and compassion, ready to live out her next dream and shine her light. I saw Nina walking, yes, walking to receive her diploma, with a father and mother sitting on the stands cheering her on and proud to call her their own. I saw Nichole too, and it was hard not to cry picturing that day.
I don’t know what will be of Nichole’s future. She is only 3 years old, but right now we do see college in her future (there are many programs available now a days for individuals with Down syndrome) It will be a day full of celebration, of empowerment, and of great accomplishment. My friend Leah wrote of her daughter Angela on her essay in Gifts 1, “The sky is her limit.” And so it is for Nichole.
But what if Nichole is not able to go to college? What if realistically her intellectual capabilities are not found in a classroom of higher education, even in programs targeted for others with intellectual disabilities? Will we have failed? Will she have failed? Will there be less value to her life?
She will never be a doctor, a lawyer, or a scientist. She will not be the greatest athlete or performer. She will not find the cure for cancer and she will certainly not be the next president. But then I look at Nichole and I am trapped in her eyes, unable to look away, unable to question anymore. The little girl that looks back at me is not broken, and she is not less than perfect. The value of her life is not found in all the things that she will never be, but in the things that she is. And at only 3 her accomplishments are those that many of us seek to someday reach.
Nichole might not be a college graduate, but she is my teacher, my teacher of life. She has taught me what celebration looks and feels like. The power of cheering for others and the freedom of dance. She has taught me that a worthy performance is not found in a basketball court or a stage, but on a living room floor stacking blocks, and in saying “crackers please.” I see it as she embraces people and her love bring them to tears and a muster from their lips, "She makes me feel loved like I never have been before." I have seen worship to God that is so honest and seems so pleasing, that it brings me to tears. I see it as Nichole tries to sing along at church, raising her arms to the God that gave life to her, or singing along and dancing to a video while she tries to sing along, “Let everything that breaths sings praises to the Lord, praise the Lord!”
She has partnered with God to work in my selfish heart. A heart that many times is so lost in this world and forgets that the standards I live for are not the ones set by people, but those set by God. She lives them, she teaches them to me.
I have seen joy in her, and wished that I could feel what she feels. It is so pure.
I have felt peace and love through her. At times when I am down, she instinctively knows it and comes to pat my back, and then she pulls me tight into a hug and offers a smile, maybe even asks if I need some crackers or chips too.
And every day she works harder than I usually do to master and accomplish new skills.
No diploma will ever be able to credit the value of Nichole’s life or the meaning of her accomplishments. She is already ahead of me in the things that really matter in life, and therefore she is my teacher and I her student.
And someday, maybe I will get to “graduate” and she will be the one cheering for me saying, “You did it mom! You did it!” And I hope that she is as proud of me as I am proud of her now.