Sunday, October 31, 2010

Down Syndrome Awareness: Can People With Down Syndrome Have Babies?: Answering Your Questions

1 What are your thoughts?
With an extra chromosome, can people with Down syndrome have babies? Will those babies also have an extra chromosome?

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

Internet Out

2 What are your thoughts?
It seems like my computer at home is having some problems. All of a sudden it is not connecting to the Internet.
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

Pete the Purple Pumpkin-A Sibling Perspective

2 What are your thoughts?

Pete the Purple Pumpkin

By EmmaLee McDonald

(Dedicated to EmmaLee's little brother Toby, who has Down syndrome)

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.

Color and Paint

0 What are your thoughts?
A few months ago, as we were getting ready to begin our journey with homeschooling, I bought the book, "The Great Big Art Activity Book." Ellie loves to draw, color, paint, and craft away. Homeschooling, for Ellie, needs to have enough creative fun.

I love this book! It has different sections for drawing, painting, world art, sculpturing, and printing. I am able to pick and choose projects that I know Ellie will enjoy and that will help her be creative and practice some skills.

Today, we had our first official Art lesson, and Nina decided to join in the fun. Nichole was not interested, so she hung out with her daddy.

We looked at all the different ways to create texture when we color. We did crosshatching, curved lines, short lines (for fur or feathers), dotting, smudging with oil pastels (our favorite!) and even turned a scribble into something creative!

Ellie did a great job and her creations ended up being pretty sweet!
We then painted a color wheel. We started with primary colors and then we mixed our very own orange, green, and purple. Ellie really enjoyed this activity, and found the "perfect" color combinations.
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

The Power of Words

1 What are your thoughts?

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.

One word that has changed in meaning over time, is the R-word (retarded.)

Back in February, when there was controversy going on with this word, I wrote a post about how our family feels about this word.

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

From Mutterings and Mussings

1 What are your thoughts?

This beautiful girl you see is Lucy. When Nichole was first born I found a wonderful forum for parents of children with Down syndrome. Lucy, and her mommy Courtney was a member of this forum, and since we both had babies, I really felt a connection with Courtney. I valued that they had journeyed with Down syndrome a little bit longer than we had and ever since then I have been following their family blog.

Just yesterday I got to read Lucy's birth story for the first time! I was surprised at how similar our stories were.

So I wanted to share their story with you, since it is down syndrome awareness month. Happy reading!

The Beginning

It really all started with a phone call in February, though I wouldn’t know that for another five months. The day after my 20 week ultrasound, the obstetrician’s office called to tell me that they thought they saw an echogenic foci on the baby’s heart. They told me this was a “soft sign” for Down syndrome. They asked me to come back in for a Level II ultrasound.

I remember being so scared. I couldn’t get an appointment for five days for the follow-up ultrasound. They were the longest days I had known to that point. I didn’t want to tell many people about this “complication”, but I was really struggling with pretending nothing was wrong. We were in the process of buying a house at that time, and had just put a bid in on a house I loved. Mark came into the room and I was crying. He thought it was because they had accepted someone else’s bid. I had never cared less about a house in my life.

My mom went with me to the ultrasound. “Everything looks perfect.” Sigh of tremendous relief. A few more months of blissful ignorance.

I felt my first contractions on Saturday, June 30…literally just moments after taking care of the final preparations for Lucy’s arrival. In the car after having the carseat inspected, I patted my tummy and said, “ok, Peanut, we’re ready for you now.” She listened.

The labor itself was horrendous. I didn’t know it at the time, but I was having back labor. This fooled me into believing that I was farther along than I really was. Sunday night I made Mark take me to the hospital, convinced this baby was coming any second. They sent me home at 1 cm. I felt foolish and vowed not to go back until I was sure she was on her way. The end result was that in a stubborn snit I waited far too long and my precious daughter was dangerously close to being born on my living room floor.

Mark was at work, so my sister took me to the hospital and stayed in the delivery room for the whole ordeal. I progressed from 5 cm to 9 cm in less than 25 minutes. No epidural. I was sure I was going to die. The consolation was that she came fast. I barely pushed. Mark barely made it in time. From the moment of checking into the hospital until the moment she was born…56 minutes.

They took her to the nursery immediately for observation. I was so disoriented that this did not alarm me. They said it was nothing to worry about, but they wanted to monitor her breathing. They came back quickly and said she was breathing fine, but her temperature was low so they were going to put her in the warmer for a bit. They took me to my room, but we stopped by the nursery so I could hold her for a few minutes. She was gorgeous. She looked like Mark’s Mom, brother, and aunt. I was smitten.

It wasn’t terribly long until they brought her in to the room. Maybe an hour? I was eating and don’t really remember. Life was still too surreal to be keeping track of time. We held her. Took pictures. Sometimes when looking back I feel like something was off, something that I couldn’t put my finger on. But sometimes I think it’s just hindsight.

A few hours after Lucy was born, maybe about 4 or so, I was in my room with Mark and his parents. The pediatrician came in to examine her. She was listening to her heart. For a long time. A really long time. My FIL, not one to beat around the bush, questioned the doc on the intensity of her exam. This pediatrician, whom I had never met before, looked at him and said, “well you know the baby has Down syndrome, right?” (I remember it slightly different. I thought she said, “we think the baby has Down syndrome”, but Mark and his parents agree on the original version so that’s what we’ll go with). Mark responded with “Excuse me?”, to which Dr. Bedside Manner replied with, “Are you the baby’s father?”. I am sure there is a lawsuit in there somewhere, but when it was relevant, I didn’t have any fight left in me. Needless to say, this woman is NOT my pediatrician.

“Well, you know the baby has Down syndrome, right?” No. I didn’t. I had always heard the expression “all the air left the room”. I had never felt it until that moment. It left the room. It left my lungs. It was as if someone had physically punched me in the gut. I was shocked. But given our scare way back in February, I wasn’t necessarily surprised. I wonder sometimes if that made it easier. That little non-warning.

The doctor then preceded to show us all the physical characteristics that lead them to the conclusion that Lucy had Ds. After she left, we preceded to explain them all away. Her almond shaped eyes, well, Mark’s family has almond shaped eyes. The small, low set ears, well, I have really tiny ears and I have always felt they were a little low. The slight curvature of her pinky, well, I have a good friend whose pinkies are slightly curved and she most certainly doesn’t have Down syndrome. We’ll wait for the karotype to come in, but we’re pretty sure they’re mistaken.

But, later that night, when everyone else was gone and it was just me and Lucy, I unswaddled her. I looked at her feet. I could not explain away that gap between her toes. And in my heart I knew, though I wouldn’t admit that I knew until the next day when her new cardiologist told me that she had a heart defect and would require open heart surgery within the first year of life. When he walked out, Mark and I both admitted we didn’t need to wait for the karotype any longer.

When she was two days old, we took her home. Knowing what I know now, about how many babies with Ds spend time in the NICU, I feel tremendously blessed. We took her home, relatively healthy, and began the long process of rebuilding our reality

Wednesday, October 20, 2010


2 What are your thoughts?
A couple of years ago, one of our MOPS mentors talked to our group about friendships.

There are friends for the road. These are the friends that come into our lives as we travel the different roads of life. These are friends that come and sometimes go, but dear friends as we share significant life stages or life happenings with.

And there are friends of the heart. The friends that are with us forever. Those friends that we have known for a long time, and that even when years have gone by, when we get together, our hearts are still connected.

Two weeks ago I traveled to Mexico for my grandmother's funeral. In my trip, I got to see a few of my friends of the heart. Friends that I have known for a long time, and friends that are so dear to me. Spending time with them makes me realize how much I miss them, and how I wish we could do life together, go out for a cup of coffee or for lunch.
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.

What a dear friend she has been to me for seventeen years! (I know you are all doing the math, how old am I?)

We shared all the teenage drama, boyfriends, heartaches, family frustrations. We laughed and cried together, and her parents and little brother (now a handsome young man) were like family to me.

I got to see Yuri two times when I was in Mexico, and we talked and talked and talked. She is a beautiful woman and I love her dearly. Amazing how after years of not seeing each other, it did not matter at all. She is still, and will always be, one of my closest friends.

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.

Anyone that knows me, knows Rumi. My friends from college know her, she came to visit. My friends from camp know her, she came and volunteered for a month. On my wedding, she stood by me. And even people from our church know her, as she went on a missions trip to Ensenada to a special needs orphanage to help translate. A life long friend.

Amazing that God, who created us to his image, created us to be relational beings, and He blesses us with friends that we can do life with.

Today, I am thankful for my friends of the heart.

For more on my thoughts on friendship, you can click here and read an article that was published by Christianity Today in MomSense magazine.

Tuesday, October 19, 2010

I'm Down With You

1 What are your thoughts?
I am looking forward to this documentary! I have the book by my bedside and the pictures are beautiful!

This project was started not by a parent of someone with Down syndrome, a sibling, or a close friend. Jagatojoti Khalsa found beauty in an unexpected place, and he could not turn away. He was touched, and he has used his many talents and gifts (such as his book) to honor and share these wonderful individuals with an extra chromosome.

You can click here and take a look at his projects and amazing photos.

Monday, October 18, 2010

Down Syndrome Awareness: Answering Your Questions: On Physical Characteristics

0 What are your thoughts?
I following your link to the information about single transverse palmar crease. I have this in my right hand.

A single transverse palmar crease appears in about 1 out of 30 individuals. So really, it is more common than you think! Sometimes, as it is the case with Down syndrome, fetal Alcohol, and other conditions, this can be one of several markers for such condition.

Medline Plus has some more information on the transverse palmar crease if you want to check it out.

What's interesting is that I know people who have maybe one of these characteristics that do not have Down syndrome.

Yes, many of the characteristic features of Down syndrome are found in people that do not have Down syndrome. Remember, that the characteristic of Ds are simply seen more often, but not exclusive of Down syndrome.

Nichole, for example, does not have a transverse palmar crease.

My ears, for example, sit a little lower on my head.

I know several people that have the transverse palmar crease and do not have Down syndrome.

I have a friend that has tiny little ears that bend slightly at the top and she does not have Down syndrome.

Some of my nieces have the tiniest bridges of the nose.

I have a niece with hypotonia.

Like I said before, these characteristics can be found in the global population, it is just that several of them seem to come together for individuals with Down syndrome.

Sunday, October 17, 2010

Down Syndrome...Because Language Matters

0 What are your thoughts?

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.

Here is what the National Down syndrome Society says about the preferred language for Down syndrome:

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

Physical Characteristics of Down Syndrome: Taking a Closer Look

10 What are your thoughts?
It was 1866 when an English Physician named John Langdon Down first described the similarities of the condition that came to be known as Down syndrome (Down, named after him.) This happened before we had any insight into the genetic makeup of individuals, so it was not known that the presence of the extra 21st chromosome is what causes Down syndrome. At the time, an individual would be diagnosed by noticing certain characteristic physical features. Let's take a closer look at what some of these physical characteristics are.

Nichole has many of the characteristic facial features of Down syndrome.
Eyes: The eyes of an individual with Down syndrome might slant upwards a little bit and are almond shaped. They might have small folds of skin at the inner corners, which are called Epicanthal Folds.
The outer part of the iris might have light spots that are called Brushfield spots as shown in the picture bellow.
Nose: The bridge of the nose is smaller than usual, giving the impression of a button nose. This sometimes gives the appearance of a slightly broader nose.
Ears: The ears in individuals with Down syndrome can be smaller and the tops may slightly fold over. The ears set slightly lower on the head.
In the picture below, you will notice Nichole's smaller bridge of the nose (appears as if she did not have a bridge of the nose) and her small ears that do sit very slightly lower.

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.
Below is a picture of a stunning young lady where you can see her neck a little better.

Flat Profile: Individuals with Down syndrome tend to have a "flatter" profile. This is due in part to the small bridge of the nose, but also the forehead tends to be flatter.

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.
The muscles surrounding the mouth are also weaker and some individuals with Down syndrome, appear to have an upside down smile (a frown.) As you can see in Nichole's picture bellow, she seems to be sad, when in reality that is her "resting" pose.

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.
Nichole, for example, has a tooth out of place, it sits way back behind the others. You can see that in the picture bellow, your left hand side between the front tooth and the canine tooth. (Forgive the messy face, it was the best picture I had of her teeth!)

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.

Not all individuals with Down syndrome exhibit all of these characteristics. It is important to remember that individuals with Down syndrome resemble their families more than they resemble one another. After all, 46 of their chromosomes are perfectly normal.

Friday, October 15, 2010

Down Syndrome Awareness: Going to College

0 What are your thoughts?
People with Down syndrome...going to College? Yes, as a matter of fact there are many colleges with programs that are targeted to individuals with Down syndrome and other intellectual disabilities.

Nichole is only 3 years old, it is hard to know what her abilities will be when she is 18 or 21. We do not know if she will obtain a High School Diploma or a High School Certificate. But what we do know, is that regardless of what she obtains, there are programs and places where she can go to College, and I want to share two of those with you, because they are my favorite options out there.

Shepherds College is the country's leading three-year post-secondary educational program for individuals with intellectual disabilities.

Just browsing their website gives me hope for Nichole's future. This is a real college experience, and there is adequate care and support for the students. Who said Nichole would live with us forever and never go to College, this is definitely a place where I would feel comfortable sending her to!

From their website:

That’s who we are. But what’s more important is who you are. What are your goals and dreams for the future? Shepherds College can help achieve and even expand those goals. We offer career skills, a smooth transition to Appropriate Independence and a lasting awareness of God and His plan for your life.

Think College is a phenomenal post-secondary program that focuses on transitioning students into a regular College Environment. Their website is a wealth of information where you can find colleges with programs in your area. I would highly recommend anyone to take a look at Think College!

From their website:

Doors to colleges are opening for people with intellectual and other developmental disabilities in many different ways all over the country. This website is designed to share what is currently going on, provide resources and strategies, let you know about training events, and give you ways to talk to others. The information is for transition aged students as well as adults attending or planning for college. It provides resources and tools for students, families, and professionals: click on the tabs above to see what’s here for you.

Lastly, I want to mention Pablo Pineda. He is a Spanish man with Down syndrome who has earned TWO College Degrees. Not special education degrees, but well earned with hard work and dedication. He is an inspiration to us of a life without limits! Pablo also speaks English :)

Thursday, October 14, 2010

My Three Year Old Has Down Syndrome

2 What are your thoughts?
My three year old has Down syndrome. Most people that see her can tell right away. Some have known her for a long time and know that she is more alike other 3 year olds than she is different. To me, she is different than other 3 year olds in that she has changed my life and heart in more ways than anyone else has in my lifetime. In only three years, she has showed me what love, joy, peace, kindness, and gentleness really look like and feel like.

So I thought I would give you all a base-line of Nichole's abilities. But remember that all kids with Down syndrome are not the same.

  • 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.
So this is my sweet girl in a nutshell. I cannot imagine my life without her. There is really nothing about her that I would change. We are all in love with this little girl and feel so blessed to have her in our family!

Wednesday, October 13, 2010

The Pumpkin Patch

0 What are your thoughts?
Yesterday a friend of mine came with me to take my girls to a Pumpkin Patch. Our MOPS group has been doing this for...maybe 3 years? It has been cold before, but not this year! It was a sunny, hot day for us!
Nichole even wore her sunglasses for all of three minutes...tops!
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

My Teacher of Life

2 What are your thoughts?

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.

This is reposted in light of Down syndrome awareness month.

Sunday, October 10, 2010

Down Syndrome Awareness: Answering Your Questions: When People Stare

0 What are your thoughts?
How do you handle people's comments about Nichole as well as children who do not mean to hurt but do in their natural curiosity?

When Nichole was a baby, I was sure everywhere we went people would stare at her because she had Down syndrome. Whenever people would say things like, "She is so cute!" Deep down I struggled thinking that they were being nice not knowing what to say because of her Down syndrome looks. Now that Nichole is 3 years old, I look back and realize that those were my thoughts and feelings. I was the one dealing with the diagnosis of my baby, not them! When someone said Nichole was a beautiful baby, it was because she was beautiful. She still is one beautiful little girl.

However, there are times when people do stare at her. There are time when I know by the look in their faces that they are trying to figure out what is "different" about my little girl. I do believe the older Nichole gets, the easier it is to notice her facial characteristics of Down syndrome. I have gone through many stages as I learn to deal with the staring. First, I wanted to hide her and protect her. Then, I wanted to say, "How dare you stare at my baby! She has Down syndrome so what!" or even say, "What are you staring at!?"

See, the truth is, before I had Nichole, I would secretly stare too. I was not being rude, or mean, I was just being curious. I never had ill intentions when staring, I was just very ignorant about "different" people. I think it is safe to assume that most people are also curious and simply don't know much about differences. Some people are rude, and some people are mean. Thankfully, I have not personally encountered people like that.

What I do now when older kids or adults begin to stare, is engage them in conversation. I know they do not mean to be rude, and I know they are curious. I like to make eye contact and I always ask the same question, "She is pretty cute, isn't she?" Sometimes this questions surprises people, some might turn away, but most people (at least those I have encountered) are faced with an opportunity. They can stop staring and actually look at Nichole. I have given them permission to look closely at her, and see her beauty. I have told communicated to them that it is okay to look at her beautiful little face. After a while of people looking at her, I usually get something like, "Yes, yes she really is beautiful." Some might be brave enough to ask questions, and I really appreciate it when people do ask about Nichole or Down syndrome.

As for children, I have not had any child ask a question that deep down hurt. Ellie, my oldest, does a pretty good job educating her friends. The only thing I get from some kids is why Nichole cannot talk. I tell them that she can, we just don't understand her, which is why she also talks with her hands and uses sign language. No kid has ever told me that she looks different. When it happens, I probably will blog about it! Ha!

And remember that if you have any questions about Down syndrome, I will be answering them this month as it is Down syndrome awareness month.

Saturday, October 2, 2010

Happy Third Birthday Nichole

5 What are your thoughts?
Three years ago, Nichole made her appearance in this world. I saw her coming out of me, I saw she had Down syndrome. I was scared. For two weeks I cried every day, several times a day. her diagnosis seemed so daunting, so hard to live with. I look back at that day, and I wish I could go back and whisper in my ear what I read in Gifts weeks later, "You will experience shades of color that you never knew were possible."

Three years later and I cannot imagine life without Nichole, even life without Down syndrome. Nichole has come to challenge us in the way we do life, the way we think, and the things that we value. She has taught us much about joy, peace, and unconditional love.

When I look at her I am blown away by her beauty. Not only because of her outward appearance, but because Nichole has the unique ability to show you her soul, her heart. There is so much love in her little being, so much acceptance.

I love her with a fierceness that pushes me to do things I thought I would have been too timid to know. She challenges me to be the best I can be.

It is an honor to be Nichole's mother.

I love you my little rascal. You are a light in my life.



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