World Down Syndrome Day (2012)

The International Down Syndrome Coalition for Life (IDSC) put out a beautiful video this WDS day. Erin and I were thrilled to be a small part of this message, and we pray that many hearts were moved. There is a disconnect between what the world thinks our lives are like when we have a child with Down syndrome (quite evident from the 90% abortion rate after a prenatal diagnosis) and what our lives are really like. It is my hope that many will understand that parenting a child with Ds is just as amazing as parenting a typical child. Erin brings us so much joy and fills our hearts with pride. I am thankful to have been a part of the IDSC for Life from the beginning. Check out our website: http://www.idscforlife.org/



Here's our picture...

Erin's Birthday Celebration

Erin turned FIVE on March 1st. We are so thankful for this little girl. I wish I could convey what a privilege it is to know and love her. Her little soul is so filled with sweetness.

I was recently reading an article about Down syndrome. Near the end of the article, the author captured something about loving a child with Down syndrome that spoke to my heart. He said, "Caring for and living with children with Down syndrome humanizes us: it teaches us to love selflessly, the way Christ loves us. And it teaches us to love ourselves: even those parts of ourselves we'd prefer others not see, those parts that we ourselves would rather not look at....we need such children among us." Yep, I believe that is so true!

So, just how does a five year old spend her birthday?

The day actually began the night before, with two older sisters bickering over who Erin got to sleep with on the eve of her birthday. Molly grace won the flip of the coin, so Erin snuggled in with her for the night.

In the morning, after "pantay" (pancakes) for breakfast, Erin spent a little time at the Delaney Day-Spa.  Fingernails were painted....

Hair was braided.  A flower barrette finished the look.

Next, we were off to the store to pick out a birthday cake.  But first she had to find the only mini puddle in the driveway to stomp in.

Since they didn't have Mr. Bean cakes (LOL) at the store, she opted for the readily available Sesame Street theme.


Lunch included a main-course side-dish of Cheetos, her favorite.

When Seamus took his nap, Erin had the iPad all to herself.

After dinner it was time to open presents.  ALL day, whenever someone mentioned her birthday, she'd look you in the eyes and ask, "presents??"  We'd say, "Yes, Erin, later after dinner".  She'd say, "Otay", and go about her merry way. 

(Yeah, just look past the Christmas wrapping paper...)

Finally, it was time for the cake....

....but she was more interested in the little Elmo rings which were on top of the cupcakes.

Happy birthday sweet girl!!!  We love you!!!

Ballerinas have Down Syndrome too!

Erin's New Glasses

A few months ago Erin got glasses. We tried our best to make a big deal about how lucky she was to have glasses, just like Daddy.  Ha!  Let's just say we wasn't buying it....at all.  Goal number one was to get her to wear them for five minutes.  Then 15 minutes.  Then an hour.  Then, an hour, without her little brother pointing out, over and over again, that she did in fact have her glasses on.  Sigh. Finally, after a good long while, she now wear them most of the day.  Now, most of the time, she doesn't even seem to notice she has them on, which of course was our long-term goal!

I think she's pretty adorable in them, if I do say so myself.

Now, here's my plug for Specs 4 Us.
 
Specs 4 Us was started by a mom who had a little four year old girl with Down syndrome.  Often, because kids with Ds have very shallow nasal bridges, and small noses in general, glasses slip down.  We purchased another pair of glasses from a different manufacturer and they were always slipping down.  Specs 4 Us makes a huge difference!  So, my girl with designer genes now has glasses designed just for her.  Amazing, isn't it?  I love how this mom saw a need and did something about it to make life easier for kids with Down syndrome.  It's the small things that can become the big things, and this mom is grateful.

My Little Inspiration

We took advantage of one of the last few warm days of fall to enjoy an afternoon at Pamprin Park.



As Erin started to climb up the rope ladder to reach the slide, two things occurred to me.  First, it occurred to me how determined Erin was to reach the top.  Despite many failed efforts in the past, she had all the confidence in the world that she was going to reach the top.  Second, it occurred to me how far she has come in a year's time.  No way could she have made it up that rope ladder last summer.

Given her determination,  I made a mental note to allow her to give it her best try, without too much help.  Her determination, despite frequent failings, made me feel weak. Erin teaches me not to give up.

I thought about how effortlessly my other six children have climbed this very same rope ladder.  Did I even notice their milestone?  I think not.  It just came natural to them. I took it for granted.  I thought to myself....did they concentrate to steady their ankles? Correct their pronating feet? 

I resisted the impulse to grab onto her to align her hands and feet.  She can do it, I thought.  She has taught me that time and time again.  Thank you, God, for teaching me patience.

The end was in sight.  She was struggling.  I kept snapping pictures and practicing patience.  In between,  I caught a glimpse of her smiling.  Yes, smiling. It was as if she was unfazed by the hard work at hand.  Hard work comes naturally to Erin, and she doesn't seem to mind at all.  Thank you, God, for teaching me how to handle difficult tasks.  You knew what You were doing when you blessed us with this child.

This last little hump took the longest.  Let her do it....let her do it.......let her do it.......I am reminded of the words of wisdom that a wonderful priest friend once told me..."The happiest people I know are those who have worked the hardest."

Almost there!  I continued to snap pictures, wishing I could get Mike's attention, so he too could share in this milestone.  You see, Erin's milestones are not like our other kids' milestones.  As her parents, we understand the time and effort that is needed to master a task.  Let me tell you, parenting children with special needs is underrated.  We feel such a sense of pride over what appears to be the simplest of tasks.

Yay Erin!  Do you have any idea how much you inspire me, little girl?  Thank you, God, for this sweet blessing.

 “For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.

My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth...."

Psalm 139:13-15

Of course there's a great reward for all that hard work!

My Interview about Erin

A while ago I was interviewed by a middle-school student. This student was working on his Disabilities Awareness Merit Badge for Boy Scouts and needed to interview someone regarding their child's disability. It was my pleasure, as always, to talk about Erin :). I decided to post it here on the blog for others to read as well. (Names have been removed for privacy)

*Edited on 8/16 to add that my interviewer, Alex, gives permission to use his name on my blog AND he did indeed earn his Disabilities Awareness Merit Badge! Congratulations, Alex! That is a lot of hard work and you should be proud. On a side note, Alex's charming sister, Victoria, took a liking to Erin's princess picture, which I sent to Alex, and she is keeping it safely in her room. So sweet :)

Hi Alex!

I think it is great that you are working on your Disabilities Awareness merit badge! I am also thrilled that you want to find out more information about my daughter, Erin, Down syndrome, and how her disability affects her and our family! I will do my best to answer your questions.

First, I want to give you a little information about Down syndrome. In 1862, a physician named John Langdon Down recognized that some children shared similar facial features and cognitive delays. Based on these similar features, Dr. Down identified the syndrome, naming it after himself. Because Dr. Down did not have Down syndrome himself, we refer to it today as Down syndrome rather than Down’s syndrome. Until the middle of the 20th century, the cause of Down syndrome remained unknown. Then, in 1959, Dr. Jérôme Lejeune, a French scientist, discovered that Down syndrome resulted from an extra chromosome. A chromosome is a threadlike structure found in the nucleus of each cell. Our chromosomes carry our genes, which are what gives us our hair color, skin color, eye color and all the traits that make us unique. An individual with Down syndrome has 47 chromosomes in each cell of their body rather than the usual 46. Chromosomes also come in pairs (one from our mother and one from our father) which we number, 1 through 23. (So, 23+23=46). The extra chromosome found in the cells of an individual with Down syndrome is always number 21. Therefore, people with Down syndrome have three copies of chromosome 21 rather than two. I have attached a picture of Erin’s Karyotype, which is a picture of her chromosomes. Can you find the extra 21st chromosome? Dr.Jérôme Lejeune, the scientist who discovered the extra 21st chromosome, loved working with children who had Down syndrome. He knew they were worthy of dignity and respect just like everybody else. Dr. Lejeune was a great friend of Pope John Paul II, and in 2007, the cause for canonization was opened for this great scientist. Maybe someday we will call him Saint Lejeune!

Now, on to your questions...

1) What is it like for your daughter to have Downs Syndrome? How does it affect her day-to-day living?
Erin is four years old and enjoys many of the same activities as other four year olds. She loves to play with toys, listen to books, watch TV, listen to music, dance with her sisters, wear princess dresses, play at the playground and eat delicious foods. At times, however, it takes Erin longer to learn the same things as other kids her same age. One reason Erin learns more slowly is because she has what is called hypotonia, which is low muscle tone or muscle weakness. Hypotonia can affect large muscles (such as those in arms and legs) as well as small muscles (such as those in the mouth and tongue), and even muscles on the inside of her body (such as intestinal muscles). For example, it took Erin longer to crawl, walk, jump, run and talk than most children. If you want to understand how low muscle tone can affect your hands, try this experiment: Put a pair of socks onto your hands, then try to tie your shoes. It is not so easy! Speech is especially difficult for those with Down syndrome because we have so many little muscles in our mouths, lips and tongue. Did you ever receive a shot of Novocain at the dentist office? If so, you have felt the numbness in your mouth and you probably found it difficult to form the sounds of speech. That sensation is similar to how somebody with hypotonia feels when trying to form the sounds of speech. If you have never experienced the numbness of Novocain, you could try this marshmallow experiment: Put a marshmallow into your mouth, chew it up a little bit, then try to talk. If you do that, you will have a better idea of how difficult it is for those with Down syndrome to form the proper sounds of speech. Another reason Erin learns more slowly is because she has cognitive delay. This means that her brain works more slowly, at least some of the time. It is especially hard for Erin to learn by listening to instructions. It is much easier for her to learn by seeing the instructions. Because she learns best by watching, we make sure that most of what she learns is done visually. For example, by the time Erin was two years old, she could only speak about 10 words properly. However, she knew 200 words by using American sign language, which she could watch and learn very easily! We have found that it is very important to recognize the fact that Erin learns more slowly and in different ways. It is just as important to remember that she does indeed learn, in time, at her own pace.

2) What do you need to do for her that her brothers and sisters can do for themselves?
There are a few things that Erin cannot do that other typical four year olds can do. For example, she cannot jump with two feet off the floor, say as many words as other children her age, use the potty all by herself and dress herself. Erin can do much more than her younger brother, who is almost two, but not as much as other four year olds. It is important to know that she will learn these skills in time, just more slowly. We try to encourage Erin to do as much as she can by herself. For example, she has learned to use a spoon and fork, brush her teeth, make the sign of the cross when we pray, put away her toys, color pictures and ride a tricycle, just as other children do. One way we can encourage Erin to learn new skills is to allow her the extra time she needs to practice. We have to be very patient at times, but it is better for her to practice doing these skills by herself so that she can learn to be more independent.

3) How does her having Downs influence how other people see her? Do they treat her differently?
How other people treat Erin, because of her Down syndrome, is the single most difficult part about her disability. Most of the time, people who treat Erin differently do not understand what Down syndrome is. Some may not understand that she learns more slowly, and therefore, they may think that she does not learn at all. Perhaps they are even afraid of her, because she looks and acts differently. All of this can be difficult. One time, I noticed that an adult was speaking very loudly to Erin. I think it was frightening her because she didn’t know why that person was shouting. I had to explain that Erin does not have hearing loss, and there was no need to shout. Once I explained this, the adult began speaking in a normal tone. I also have to remind people quite often to give Erin the time she needs to respond, and to allow her to do things for herself. In our busy, fast-paced world, we are often impatient. Sometimes we all need to remember to slow down and give those with disabilities the time they need to do things for themselves. We have found that having Erin in our family has allowed us to learn this important lesson. She has taught us that reaching milestones more slowly, or having to work harder to learn a new skill is not a sad thing. In fact, when that new skill is finally learned, after much hard work, we all celebrate even more!

4) Do you think that the government does enough to ensure that people with Downs have an easy time getting around? Are there enough accommodation's made for those with Down's in terms of access?
I do believe the state and federal governments have done a lot to make life easier for those with Down syndrome, and other disabilities. Having Down syndrome does not usually limit one’s ability to walk, so most adults do not need to use special ramps or handicapped parking spaces. Because most adults with Ds do not drive, many get to their workplaces by using public transportation –usually buses. Many states also offer financial help to those with Ds, for a variety of therapies or medical conditions, such as speech or physical therapy. When Erin was six months old, she needed open-heart surgery to repair a hole in her heart (about half of all children born with Ds have a heart defect). This procedure costs thousands of dollars. Although we had medical insurance, it did not cover the full cost of this surgery. Our state government provided some money, called Medical Assistance, to help with this cost. Since then, Erin has been very healthy, so we have not needed Medical Assistance, however we are thankful that this program is available for those who need it.

5) What do you wish people who aren't familiar with Down's Syndrome knew about the condition?
When parents first find out that their baby has Down syndrome, they are often sad or worried. Then, as that baby grows, they discover that their baby, who they were so worried about, is very much like their other children in so many ways. I wish that people understood that Down syndrome is not something to fear. Children with Down syndrome give their parents, and others, so much joy! It is true that children with Down syndrome have to work harder than typical children, but hard work is not such a bad thing. Often, with hard work comes tremendous pride in the accomplishments that are made! Sometimes others may feel sorry for those with Ds, or their families. They may even take pity on them and think that somehow, children with Down syndrome are not as worthy or as valued as other children. That is simply not true. We know that God is perfect and He does not make mistakes. I wish that others understood that Children with Down syndrome are created in the image and likeness of God, just as other children. Additionally, I wish that others could understand that individual with disabilities can teach the world so many important lessons. When we care for others in need, we share some of God’s love. When we share some of God’s love, we have a better understanding for how much He loves each one of us, even with our shortcomings, imperfections or disabilities. Having Erin in our family has taught us so much about God’s unconditional love, and that is something that makes me very thankful!

Good luck on your merit badge, Alex. I’m sure you will do a great job working towards that award! I also look forward to having you back with MODG next year!

God bless,
Mrs. Delaney

"YOU......Are you happy?"

These four little words, coming out of the mouth of our little Erin, earn a gold medal this week.  As you may guess, speech is delayed nearly 100% of the time in those with Down syndrome.  Oh, don't get me wrong, Erin chatters all the time!  Understanding that chatter -articulation- is the difficult part.  She knows what she is saying, but we, on the receiving end, sometimes fumble with our guesses.  We are becoming more seasoned at understanding her dialect. Nonetheless, we do guess, often over and over, in hopes of making sense of whatever it is she is wanting to communicate.  Erin does use sign language, which helps tremendously.  She is a master at charades...I'm always gonna be picking that girl, hands down, on my team if I want to win at charades.

When Erin is not chattering, in her sing-songy little voice, she often communicates in one or two word phrases, especially when she is serious about getting what she wants.  In single words, we can nearly 100% of the time understand what she wants or needs. But we have been at the one or two word phrases stage for a long time....


So, the other night Erin was lying in bed singing Veggie Tale songs, specifically Madame Blueberry songs.  Suddenly, she looked at her sister Eileen, who was lying in the other bed, and in perfect Madame Blueberry imitation said, "YOU.....are you happy?" She even pointed and used appropriate facial expression, just like Madame.

I'll take it.  Four words.  Perfectly articulated. Madame Blueberry accent and all.  It is times like these, times so ordinary for typical kids that is is taken for granted, that our Erin really shines and makes us so proud. 

Happy Down Syndrome Day!

Check out this beautiful video my friend Diane made for the IDSC for Life! Yes, you can see Erin at about 1:52 :) Feel free to pass it around and share it!

The Down Side of Down Syndrome

I'm going to link to a friend's blogs who wrote a recent post about a little girl, Lois, who is now in her heavenly home.

Jennie says it perfectly and I couldn't agree more with her.  This post is certainly the "down" part of Ds for me, the part that parents keep tucked away in the back of their minds, hoping they never have to bring it into their real lifes.  Leukemia.  While kids with Ds have an incredibly low rate of cancer in general, our kids do have a higher rate of leukemia.  Please pray for Lois' family!  She is a sweetheart who touched the lives of many, but my heart goes out to her family.

Click here to go to Jennie's blog, A Little Something Extra

Down Syndrome Adoption - {31 For 21}

Life has been busy and I have not been able to keep up with a Ds Awareness post each day.  Maybe since I have been working on this adoption post for a few days now, it will count as two :)

While our family feels incredibly blessed and enhanced by Erin's extra 21st chromosome, other families, for whatever reason, feel overwhelmed when given the diagnosis.  There are a number of factors, some real and some perceived, that contribute to that overwhelming feeling.  Many parents (up to 90%) feel so overwhelmed before the birth of their son or daughter with Ds that they decide on abortion.

I want to draw attention to the adoption option for children with Ds. The Down Syndrome Association of Greater Cincinnati has a National Down Syndrome Adoption Network which handles many domestic adoptions for children with Ds.  They have a wonderful program, serving both birth parents who choose not to parent their child, and adopting parents. Because of the high abortion rate of babies with Ds in our country, the demand to adopt a child with Ds is quite high.  Last I heard, there is a waiting list of about 200 families. My friend Jill recently adopted a four year old boy with Ds who, I believe, was networked through this organization (Jill if you're reading this, correct me if I'm wrong :) Another friend, Ruthann, was blessed with the adoption of Micah, not through the NDSAN, but with another agency right here in NE Wisconsin. Many people just do not realize that there are plenty of families who are waiting to adopt a child with Ds in this country. In fact, since Erin's birth, I have noticed a trend regarding Ds adoptions.  Many families who have a biological child who happens to have Ds, later (after the shock wears off), seek to add to their family by adopting another child with Ds.

Because of this wait-time in our own country, many families seeking to adopt a child with Ds turn to international adoption, where the situation is much different. Many counties in Eastern Europe, and other poorer countries around the world who lack the technological advancements of prenatal testing, have a more realistic representation of Down syndrome birth rates (fewer terminations). This, coupled with fewer resources and a lingering stigma associated with parenting children with special needs, results in more children than there are families willing to adopt. They have orphanages in these countries.

Enter Reece's Rainbow! Reece's Rainbow in an international Down syndrome orphan ministry.  They offer adoption grants, advocate for orphaned children, support the birth families and walk adopting families through the process of international adoption. They are doing incredible work. I am especially excited about their new program called Connecting the Rainbow.  The long-term goal of Connecting the Rainbow is to eliminate the need for Reece’s Rainbow by serving as a catalyst for social change abroad.  These families who have children with special needs need resources and RR is coming to the rescue.  My prayer is that CTR they be able to provide true resources, support and education to these families before the culture of death grows strong with seek-and-distroy prenatal testing, which may only raise their termination rates to the levels we have here in our own country.  CTR is doing very important work!  Please pray for their efforts.

Here are just a few of my friends who have adopted a child (or children) with Ds through RR; you may enjoy reading their stories on their blogs:  Meredith, Shelley  Ellen, Bethany, McKenna, Brigitte.  I have other friends who are in the process of adopting, working with RR right now. Adoption is a beautiful option!

Finally, I'll let Meredith and Micheal Cornish explain their adoption journey in their own words. They have three biological children (one with Ds) and three adopted children (all with Ds). God willing, they will be adding Monroe, and possible Aleksa, to their family very soon.

Make video montages at www.OneTrueMedia.com

It's the Soul of our Nation That is "Deformed"

I have "met" so many wonderful people in the Down syndrome community since Erin's birth.  It is certianly one of the extra bonuses that comes with the extra 21st chromosome.  I remember a dear friend who also has a daughter with Ds saying to me, "Welcome to the family", when Erin was born.  So true!  And what an amazing group of people make up this family!

One such family member is Kurt Kondrich. He has a beautiful daughter, Chloe, who is three years older than Erin.  I have not met Kurt in person, but we are both involved with the Internation Down Syndrome Coalition for Life.

Here is a little more on Kurt, his passion regarding the dignity for all life, and a powerful article he wrote...


Kurt A. Kondrich is a 20 year veteran of the Pittsburgh police force. Six years ago his daughter Chloe was born with Down Syndrome. This motivated Kondrich to return to college to earn a masters degree in Early Intervention. After graduation he retired from his law enforcement career to become Director of Community/Family Outreach for Early Intervention in the Pittsburgh area. Kondrich read a news report last week about the Sarasota, Florida abortionist who lamented killing the "wrong" unborn child during a selective reduction procedure to eliminate a Down syndrome fetus. The father of Chloe and advocate for Down syndrome children could not sleep that night and got up at 3 a.m. to write the following response to the news article:




Targeted for Termination


This past week I read an article that disturbed me deeply concerning a Florida doctor who had his license revoked . The article stated that the doctor "lost his license for mistakenly aborting a healthy twin during a procedure targeting a deformed fetus." The doctor was "targeting a fetus with Down syndrome", and he admitted he "screwed up". Based on the facts presented in this article one can conclude that if the doctor had properly targeted the unborn child with Down syndrome and successfully terminated this twin then he would have kept his medical license.


My beautiful 6 year old daughter Chloe has Down syndrome and has brought immeasurable good and Blessings into this world, and I have observed no "deformities" about her. Parents of children with disabilities have fought very hard over the past decades to have our children fully included and accepted in schools and communities. We have made great progress with "inclusion" since the days of institutionalization, but with prenatal testing we have now entered a slippery slope that is rapidly turning into solid ice. If our society devalues the life of a person with a prenatal diagnosed disability and targets them for termination then this represents the ultimate "exclusion" and eventual "extinction".


Currently 90%+ of children diagnosed prenatally with Down syndrome are "excluded" from ever shining their bright light in a lost world that has become obsessed with perfection and unrealistic traits. If the proper practice of medicine in our culture includes the skill of identifying and eliminating a prenatal twin who fails to meet the criteria of "normal", then we truly do need a massive overhaul of the "health care" system, and it is the soul of our nation that is "deformed".

You can access the article here.

Homeschooling and Down Syndrome

I did get a question regarding 31 for 21, Ds awareness - woo hoo!  A friend is wondering if I am planning to homeschool Erin.  My answer is, absolutely, and I'm excited about it!  Since she is just three, I don't have a full curriculum for her, but we have just started using some early language/reading materials that can be found here and here.  I'll be doing plenty of research and trial and error in the coming years.  Additonally, if/when she requires outside assessments and therapy, we'll plan for that too, as we are now.  One little bonus is she is an extremely eagar learner!  She has loved every little thing we've done so far, be it reading, matching games, counting games, songs, fingerplays, videos, playdough - you name it!

I also found a valuable, free, homeschooling e-book to download.  It is called Homeschooling Children with Down Syndrome, by Amy Dunaway.  If you're interested, click here.

A Life Like Yours - Maddie's Story

For today's 31 (days) for 21 (chromosomes) I am posting this inspriational video about Maddie. What a beautiful young lady! This is from the Catholic Archdioces of Washington. It is from a piece titled,“A Life Like Yours” On The Dignity of the Disabled and the Call to Save Them From Abortion, By, Msgr. Charles Pope. Click HERE for the link to the entire article.

Karyotype Images and Types of Down Syndrome

For today's T21 tidbit, I'm reposting the image of Erin's actual chromsomes.  It is called a karyotype image and it shows a picture of the chromosomes found in one of Erin's cells.  I never thought I'd be looking at my child's chromosomes, but now that we have the image, I find it pretty cool!  If you click on the image, you'll see that the pairs of chromosomes are numbered.  On the bottom, you'll see the smallest chromosomes, number 21, with three copies.

There are actually three types of Down syndrome, and karyotyping, is used to determine which type your child has. The most common of the three types of Down syndrome is called Trisomy 21. With this type, the extra 21st chromosome is found in every cell in the body. Translocation Down syndrome is the second most common type. In this type of Down syndrome, a part of chromosome number 21 breaks off and attaches itself to another chromosome, often chromosome number 14. This causes all cells in the body to have the extra piece of the 21st chromosome. When a child is born with this type of Down syndrome it could mean that one of the parents is carrying chromosomal material that is unusually arranged. The third type of Down syndrome, and the least common, is called Mosaic Down Syndrome. In this type of Down syndrome the separation of the 21st chromosome occurs in one of the first few cell divisions AFTER fertilization. This causes the baby to have some cells with 46 chromosomes and some with 47. Because of the fact that not all cells contain the extra chromosome 21, the range of Down syndrome features will depend on the ratio of cells with 46 chromosomes to those with 47 chromosomes.

We assume that Erin has Trisomy 21. Four of her cells were tested after birth, and all four had 47 chromosomes. We know for sure that she does not have Translocation Ds. Since her birth, the protocol to rule out Mosaic Ds is starting to change. Many doctors are now requesting that more cells be looked at - up to 100-200. They say this many are necessary to rule out Mosaic Ds. And the cells should come from different parts of the body (skin, tissue, blood).  Because most labs, in the past, have only tested a few cells, some theorize that Mosaic Ds is actually more common that previously thought.

Many parents really don't care which type of Ds their child has...but I find it all so fascinating :)  We sure love our girl with designer genes....designed by God.

Be sure to ask a question if you have any, about Ds or Erin, during  Ds Awarness month.  I'd be more than happy to put my teacher hat on :)

My Sweet Squishy Girl

One of the most endearing traits that we love about Erin is her soft, huggable, little body.  She is a bit squishy.  She can do the splits with ease, and all her joints are super flexible.  My kids say she has superpowers which allow her to bend and fold in any direction (think Incredibles here...LOL).  Often, this is one of the first things that others notice about Erin.  We call this low-tone.  The official word is hypotonia.

Here is the definition of hypotonia:

Hypotonia is a medical term used to describe decreased muscle tone (the amount of resistance to movement in a muscle).  It is not the same as muscle weakness, although the two conditions can co-exist.  Hypotonia may be caused by trauma, environmental factors, or by genetic, muscle, or central nervous system disorders, such as Down syndrome, muscular dystrophy, cerebral palsy, Prader-Willi syndrome, myotonic dystrophy, and Tay-Sachs disease.  Sometimes it may not be possible to find what causes hypotonia.  Infants with hypotonia have a floppy quality or “rag doll” appearance because their arms and legs hang by their sides and they have little or no head control.  Other symptoms of hypotonia include problems with mobility and posture, breathing and speech difficulties, lethargy, ligament and joint laxity, and poor reflexes.  Hypotonia does not affect intellect.  However, depending on the underlying condition, some children with hypotonia may take longer to develop social, language, and reasoning skills. 

Hypotonia can effect all the muscles in the body, including the ones you don't normally think of, such as intestinal muscles.  Kids with Ds can have hypotonia in some muscles, but not in others.  One area where hypotonia shows up in almost all kids with Ds is the mouth - the oral muscles.  That is one of the main reason why those with Ds have speech delays and difficulty with enunciation.  Have you ever tried to hold a conversation after you've been given novocain for dental work?  That is a pretty close representation of how a lot of kids with Ds feel when trying to speak!  Isn't it amazing how well they do, given this information?!

The Divine Chromosome

Trisomy 21 is the official, or medical name, for Down syndrome.  Tri refers to three and somy refers to chromosomes.  Therefore, Trisomy 21 means three copies of the 21st chromosome. What does that mean for Erin?  It means each cell in her body has an extra 21st chromosome (the smallest chromosome in the human body), making a total of 47, rather than the typical 46. Oh, and I should mention that all of the chromosomes in a person with Ds are perfectly normal, with no abnormalities.  It is simply the case that there is an extra one. In most cases of Ds (there is always an exception), the extra chromosome is present before conception, coming from either the mother or the father.  While the odds of having a baby with Ds increase slightly with age, 80% of children with Ds are born to women younger than 35 years of age. In many ways it is like winning the lottery!  I will try to remember to post an actual picture of Erin's chromosomes in a later post - pretty cool!

So, for today's Trisomy 21 tidbit, I'll post one of my favorite articles....

http://www.downsyndromecentre.ie/blog/2010/jun/09/down-syndrome-and-evidence-divine/

First Haircut for Seamus!

 We LOVED the curls while they lasted!  But, it was time, as you can see from this first photo...

  

Before...

And after...What do you think?

I think he likes it...

And, on another note, we had a great time at our local Down Syndrome Awareness Walk this morning!  We met some lovely new folks who have little ones with designer genes.  (Little Mia from Sturgeon Bay stole our hearts!)  Here are four of the kids after the walk.  Erin was NOT in the mood for a smile today.  So, let's just add that little fact to our Ds Awareness month info:  Contrary to popular belief, kids with Ds are not always happy.  They have all the same emotions as any other kid :)  Okay, okay... it is true that one of Erin's nicknames is "happy", which fits the stereotype so well, I admit.  In her case, she is almost always happy.  But cleary, she was not happy in this picture and that would be because she wanted OUT of the stroller.  Her wish was granted just after I snapped this picture :)

Down Syndrome Awareness Month

October marks the beginning of Down Syndrome Awareness month. On Saturday, we (or at least some of us) will attend an awareness walk with our local organization.  It should be a lot of fun and I look forward to meeting up with some friends.  Why do we need an awareness walk?  Well, for one, Down syndrome is the most common genetic condition caused by a chromosomal abnormality. While most of us know or love someone who has Ds, there is still so much to learn about it!   And for every sweet little baby born with designer genes, who had a prenatal diagnosis, there are nine others who were aborted.  Unfortunately, we live in a world where it is common to pick and choose which preborn baby is worthy of life outside of the womb. We have lost the belief that all life is sacred.  However, I cannot help but think that part of that 90% statistic stems from wrong or misguided information. Information is a good thing, and I would love to help provide more of it, especially if it could save a life. So, with that in mind, throughout this month, I will try to give some accurate information here on my blog to help you all to see what Down syndrome is really like. I would love for everyone to see the many blessings that Erin has brought into our lives. 

Many of my friends in the Ds community have blogs.  Many share beautiful post on facebook. They are a wealth of information! During the month of October, many rise to the challenge of trying to post something about Ds each and every day. I really don't think I can keep up with that pace.  However, I am going to be resourceful and steal tap into some of my friends' posts during this month.  Nothing like sharing the love, I say :)  (with permission of course).  At the very least, I will try to post some fact or info about Down syndrome as many days as I can.

Last year during this month, I welcomed my readers (all five of you, lol) to ask any question about Ds, or Erin in particular. In real life, I am often asked about some of the blessings or challenges that come with Ds.  I don't think I had a single question on the blog last year, but I once again welcome any questions this year! I would be glad to answer a question.  Just ask a question in the comments section of any post, or email me privately. 

For starters, I'm posting this darling video of MaryEllen, my dear friend Diane's youngest daughter...

Photo and video editing at www.OneTrueMedia.com

Medical Assistant Schools Awards Down Syndrome Blogs

There is an organization, Medical Assistant Schools, that recently gave away several awards for Down Syndrome blogs.  One of my nice followers or readers nominated this little blog...and it was picked as one of the top 30.  Surprise!  Even though this blog is not entirely about "Down syndrome", it does contain a member with an extra chromosome, thanks to Little Happy.  So, we'll certainly post the little award from MAS.  And I want to give a special thank you to the person who nominated us - that was so sweet :)

I Have a Voice!

Beautiful photography.  Beautiful children.  Beautiful message.