Down Syndrome-A Parable

Happy Down syndrome awareness month! Blogging all 31 days in October continues with a re-post of an old favorite of mine. Enjoy!

Down syndrome- A Parable:

Dedicated to my daughter with Down syndrome

Once, there was a couple who loved each other. After a few years of dating, they wed. The husband and wife both worked and saved for their optimistic future. At first, they were content with their life together. However, they were friends with other couples that had built their own homes.  These new homes were the pride and joy of their friends. Soon, that became the couple’s dream. Through hard work, it became possible for the couple to start the building process after three years of marriage.

The couple purchased land a few hundred miles away from their current residence. It was located in a quiet, small town where other new homes were being built. The couple looked carefully at their friends’ new homes and made notes to discuss with their contractor. Since their new home was being built so far from their current residence, the couple’s contractor would play a vital role in making sure things were completed properly.

The couple spent every minute working hard to save money for items needed for their new home and preparing for the move. Consequently, it was impossible for them to personally see their house in the building stages. Periodically, they received faxed pictures of their home from the contractor. The grainy, black and white pictures made the features difficult to see, but it definitely resembled a house. The couple proudly showed the pictures to friends and enthusiastically talked about their upcoming life change to anyone who would listen.

The construction of the house took nine long months. Finally, the day they had awaited came. They loaded their belongings and began the move. They arrived in their new town and made their way down their new street. Their excitement grew with each new, beautiful home they passed. Veering left at the end of the street, they pulled into their driveway at house number 321.

A large, two story home stood in front of them. But, their house was not like any other one on the block. There were noticeable differences. The window spacing seemed wider than usual. The height seemed short for a two story house. The grain of the wooden door contained an unusual line it in. Fearing bigger problems inside, they had the house thoroughly inspected, which found additional problems. The foundation of the house was not as strong as it should have been built. It would need additional beams and supports placed in order for it to maintain its integrity. These things could be added to it now, although some would be noticeable. The heat and air conditioning worked but it was not the most efficient system. The wiring of the house was also not done in a typical manner; however, it was safe and did work.

Initially, the couple felt shocked as this was not what they were expecting. But, the contractor felt he had fulfilled his obligations because the house was livable. But the couple didn’t want to settle for livable; they wanted the house to be the best it could. So, they educated themselves and found electricians, carpenters, and masons who worked with the couple to make improvements. However, some issues were not fixable, so the couple simply learned to live with them.

All of this was initially hard on the couple. They weren’t expecting to run into these problems. After all, their friends’ new homes were built without any difficulties. Their family and friends seemed sympathetic and offered friendly, but sometimes insensitive advice. Some blamed the couple for their problems. They suggested that the couple had agitated the contractor and this was their payback. The couple slowly learned to cope with the long looks towards their home and whispers behind their backs, but they always hurt a little bit.

The couple did fully embrace the house as theirs. After all, the house reflected them. The home had a large kitchen complete with two ovens for the wife’s love of baking. There was a large den for the husband’s sports collection. The floor and wall colors were just what the couple envisioned.

After spending time in their home, the couple realized they had failed to appreciate a unique feature. A circular stained glass window depicting a dove in a red heart brightly shined through the center of the living room wall. It was something so beautiful that no other house in town had. On a bright sunny day, the vibrant glow from the stained glass window reminded the couple of their happy life and future.

Life continued to move on. There were new jobs to start, groceries to buy, and chores to be done with the home. They had to adjust and that’s what they did. The couple occasionally met other people like them, often in home improvement stores. They enjoyed sharing stories and ideas in these chance encounters. They found out they were not alone, but they often felt that way in their town.

The house became something that brought the couple much comfort and peace. They enjoyed decorating their house for different holidays and inviting loved ones over to celebrate with them. But there were other circumstances that left the couple distraught. Storms with destroying tornadoes often passed by remarkably close to the house, threatening its structure. At times, the couple wondered if the house would endure the storm. In these times, the couple prayed that their house would stand and be unharmed. They rejoiced with each storm that blew through and left little or no damage. However, there was always some fear that another storm would come and take away their precious house.

In perilous times, the couple realized how much they loved and adored their house. It was different from what they originally expected. But, it was theirs. They began to focus less on what was wrong with the house and more on what was right.  Looking past the surface, it truly reflected the husband and wife. They even forgot that their house looked different to others who drove by. They fully embraced what was theirs and their way of life with the house became normal to them.

This was a house that few could fully appreciate, understand, or accept. A house with challenges yet a source of pride. A house deemed by some as a waste of time and energy. A house that some would have abandoned or condemned. A house that taught one couple about perseverance, beauty, flexibility, team work, unconditional love, and the true meaning of life.

Please feel free to share this post! This story is copyrighted in 2013, so please credit the author before distributing or sharing on a personal site.

Down syndrome and Heart Defects

I'll never forget how I helpless I felt when my newborn was diagnosed with a heart defect.

Ten years ago, I sat in the NICU in shock as I found out that my sweet baby Jaycee not only had Down syndrome but an AV canal heart defect. When I was pregnant with Jaycee, the grainy black and white ultrasounds were still the norm. This coupled with the fact that our ultrasound was around 18 weeks in to the pregnancy meant that my daughter's heart defect went unnoticed until she was born.

About 1/2 of babies with Down syndrome are born with a heart defect. Some of these will correct on their own, but others will need heart surgery.

Jaycee's heart defect was one that would not self-correct. A few days after birth, she went into congestive heart failure. Medications were started to help with the complications of heart failure. Jaycee had her first heart surgery at 3 months old. After the heart surgery, she needed oxygen for three months while her heart and lungs recovered. Due to small leaks that remained, Jaycee had to have a second open heart surgery again at age 2.

Jaycee's heart defect was always the scariest diagnosis for us. It was the one that could end her life prematurely and affect the quality of her life. It would also put a scar on her chest for the rest of her life.

At the time leading up to her first open heart surgery, my mind was all over the place. I was scared of so many things. I didn't want to lose her most of all. But, I also looked ahead in the future. I wondered how I would explain the scar on her chest to her. During her time in the hospital, I made sure and took pictures that I could form into a small book for her.

Title page of Jaycee's heart book

A page from her heart book

Fortunately, most of my fears about Jaycee and her heart never came to pass. She is 10 years old now and receives yearly heart echos to monitor her mended heart. She has never questioned her scar but with her limited speech she might not. We have used the book to explain Jaycee's scar to her little brother. This book was also used in a presentation I did at Jaycee's school for the Jump Rope for Heart kick-off.

I feel blessed that we live in a country with access to wonderful medical care and doctors with the abilities to help our children with Down syndrome live longer lives.



For more on Jaycee's heart surgeries, read:
A Heart Surgery: Part 1

A Heart Surgery: Part 2

The Biggest Myth When Your Child is Non-Verbal

Myth: Individuals who do not speak have no words because no one made them talk or they don't want to talk. Individuals who can't talk don't have anything to communicate.

Fact: There is a reason why individuals have no or little verbal speech. It is not a result of someone not trying hard enough. Also, a lack of speech also does not indicate a lack of desire to communicate.


Even though the vast majority of people with Down syndrome are able to verbally communicate, my daughter struggles in this area.

Jaycee was considered non-verbal for many years. I now consider her minimally verbal at age 10. She says about 20 or words clearly now and attempts many more words. Most of her communication is with sign language and her communication device. She has difficulty with verbal speech due to childhood apraxia of speech, which can be associated with Down syndrome (see my post from Oct. 2, 2016 for more information).

Other individuals who are non-verbal may have difficulty due to a brain injury, stroke, profound intellectual disability, or muscle weakness in the face to name a few. In short, understand that if someone doesn't speak (other than the rare selective mutism) there is a medical or developmental reason for it. This is true for those with Down syndrome and those without.

Outsiders don't understand why my daughter doesn't speak. I have heard comments like:
-She could talk if she really wanted to.
-I guess everyone talks for her, so she doesn't have to speak.
-No one is making her talk, otherwise she would be talking.
-She has nothing to talk about or she would talk.
-If she can sign so well, she should be able to talk.

These comments have lessened as Jaycee has gotten older. When she was younger, it seemed like my husband and I were seen as partially to blame for her lack of speech.

Lack of verbal speech is not a result of no one trying. When Jaycee was younger, I spent hours with her at home practicing sounds in isolation, working through the Kaufman praxis words, and encouraging her to use vowel approximations of words (i.e. "ee" for eat). Besides all this, Jaycee got official speech therapy at school. The result was basically no progress in verbal speech, and we were both frustrated. Jaycee got to the point where she shut down when asked to say a word; she recognized speaking was very hard for her. She doesn't speak because her mouth and brain can't work together to form the sounds like I can. It's her body's fault and no one else's.

Even though Jaycee doesn't have much verbal speech, she has much to communicate about. She has hundreds of signs, which she uses to request, name, and ask questions. Sometimes, this misleads people. Just because someone can sign, doesn't mean that they can speak. Signing involves being able to make a hand position/motion and recalling what that position/motion means. Communicating with your hands and your mouth are two different things.

Jaycee also uses her communication device to talk about things a variety of subjects. Jaycee has emotions, thoughts, preferences, opinions, and wants that she talks about. I know Jaycee is not alone in this.

Just because someone doesn't have the ability to speak, it doesn't mean that they have no communication.

This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

2 Common Myths with Down Syndrome

It is time to play a game today called myth versus fact.

Common Myth #1:
Nearly all babies with Down syndrome are born to women over age 35.

Fact:
As the mom ages, her chance of having a baby with Down syndrome does increase. From what I have read, sources have said that 50-80% of babies with Down syndrome are born to women under age 35.

I once believed the myth that only older women gave birth to babies with Down syndrome. I didn't realize it was even possible for a young mom to have a baby with Down syndrome. Then, I gave birth to my first child, who had Down syndrome. I was 25 at the time, and the diagnosis surprised me.

I remember asking the doctor how Down syndrome could happen to my baby when I was so young. It seemed impossible or so I thought. I was sure there was something wrong with me.

Now, I know that it can happen to any pregnant mom. The chances of it happening are less when you are younger, but it can still happen. There's nothing wrong with the mom. It could not have been prevented. An extra chromosome occurred and it's no one's fault.

So, yes teenage mothers, moms in their twenties, and moms in their thirties & forties can all have a baby with Down syndrome.



Common Myth #2:
Intellectual disability is associated with Down syndrome. That means that the child can't learn and will have no academic skills.

Fact:
Individuals with any intellectual disability do learn and can develop academic skills.

Just so we are all clear, intellectual disability is the current terminology that replaced mental retardation a few years ago. Intellectual disability is associated with Down syndrome. Some people do not understand what an intellectual disability is and how it can manifest in a person. I have met several people over the years who seem to believe the myth that those with ID cannot learn.

Once, a nurse said to me, "She's not mentally retarded. She is using sign language. She has to be smart to do that."

To which, I smiled politely and did an inward sigh.

There seems to be those that assume people with intellectual disabilities are non-communicative, sitting in corner somewhere not caring about anything or anyone. They assume there's no opinions, personalities, or preferences. They focus on what they can't do.

Intellectual disability is simply below average intelligence and a difficulty with skills needed for daily life. There is a range from mild to profound. These individuals learn, just at a slower rate. I'm not saying that everyone who has an intellectual disability will do algebra, but they can learn. They may learn to do sign language. They may be able to count. They may be able to read. In short, they can. What each can do will vary, but they can do something. They will probably even surprise you!





This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

Down syndrome and Obstructive Sleep Apnea

Obstructive sleep apnea is a common problem with Down syndrome, and one we are fully aware of in my house.

Healthline.com defines obstructive sleep apnea (OSA) as a, "Condition in which breathing stops involuntarily for brief periods of time during sleep. Normally, air flows smoothly from the mouth and nose into the lungs at all times. Periods when breathing stops are called apnea or apneic episodes. In OSA, the normal flow of air is repeatedly stopped throughout the night. The flow of air stops because airway space in the area of the throat is too narrow."

Individuals with Down syndrome have low muscle tone, which means the muscles in the mouth and upper airway are more floppy. An enlarged tongue and smaller airways all also factors for these individuals when it comes to sleep apnea. For this reason, sleep studies are often recommended for individuals with Down syndrome, especially if there are any concerns. You can learn more about this topic on the NDSS website.  

Here's our story:

Jaycee was diagnosed with obstructive sleep apnea when she was 3 years. At the time, her cardiologist was concerned that her pulmonary pressures were higher than expected. This could have been caused by her congenital heart defects or obstructive sleep apnea. A sleep study was then performed to make sure further heart testing would not be needed. That first sleep study was not fun, but that story is for another time.

Jaycee was diagnosed with OSA after that first sleep study. Her tonsils and adenoids were huge, so the diagnosis was no big surprise. She underwent surgery to remove the tissue. A sleep study was repeated weeks after the surgery to make sure her OSA was "treated" with the removal of her tonsils and adenoids. To my surprise, she still had OSA.

Jaycee hooked up for a sleep study

When she was 3 years, 10 months old, we started trying c-pap with Jaycee. She is now 10 years old and has progressed to needing a bi-pap. Today, Jaycee tolerates her mask and machine well. But, it was a very long road to get to this point. It took trying multiple masks, changing from c-pap to bi-pap, and simple maturation to get her to wear her mask and keep it on all night long. I feel for any family who is trying to get their small child to tolerate wearing a c-pap. It is very challenging!

With Jaycee wearing this mask for 7 years now, it has become our norm. She treats her mask and hose almost like a teddy bear; it is just a part of her nighttime routine. That being said, the bi-pap has created some issues in Jaycee's life.

Here's a few ways OSA and bi-pap use has impacted us:

-There are no spontaneous sleepovers. If you are at grandma's house late in the night, you cannot all of a sudden decide to let your child spend the night. There isn't an extra bi-pap laying around their house for her.

-If your child wants to spend the night somewhere, the temporary caregiver must be trained on how to use the bi-pap. Honestly, who wants to do this!? Apparently just my mom, since that's the only person who has let her spend the night.

-When you travel overnight, you have to pack the machine up in a little bag. You also have to make sure you have distilled water to put into it if you use a humidifier.

-What about date nights for the parents? Well, the date must end early before your child goes to sleep unless your sitter is trained on the machine. This is the reason why my husband and I mostly have lunch or afternoon dates, which are still quite rare.

-There is no more of your child cuddling in bed with you and sleeping there a few hours. They can't because if they do, they won't be able to breathe safely.

-Mom (or sometimes dad) cannot go to bed until the child is on their bi-pap and fast asleep. There's no more coming in late and everyone settling into bed at the same time at my house. You have to help your child get her mask on. Jaycee goes to sleep much faster now. When she younger though, I would sometimes be waiting her out for an hour to get her mask on properly. I'm glad those days are behind us.

-You have to make space in your child's bedroom for the bi-pap. Since it uses water, the space has to be "safe" from falls. We have always put Jaycee's bi-pap in a drawer of some sort to keep it contained and secure. In hotels, we generally put in on a chair and stack pillows around the machine to keep it from crashing into the floor when she moves all over the bed at night.

Jaycee's bi-pap secure in a drawer

-You have to clean the parts weekly and remember when it's time to reorder new parts. That's a job that falls to me.

-You must memorize your child's bi-pap settings or write them down and carry it with you. If your child is in the hospital, you will have to know this information. I can't remember the numbers, so I keep this on her health history sheet that stays in my purse.


Obstructive sleep apnea is something that many families must deal with, ours included. Some adjustments must be made, but thankfully there are treatments to help with this condition. Every parent with a child with Down syndrome needs to understand the risk factors, signs of OSA, and discuss any concerns they have with their doctor.


This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

Down syndrome & Apraxia

For day 2 of blogging for 31 days of October in celebration of Down syndrome Awareness month, I am teaching about Down syndrome and childhood apraxia of speech (CAS). Childhood apraxia of speech is best defined here. But basically, CAS onsets in childhood and makes it difficult for the child to move their mouth to form sounds and to put those sounds into syllables and words. These children require intensive speech therapy to help them achieve more complex words forms (mama versus mommy) and to be able to build phrases and sentences.

Libby Kumin's research estimates that 15% of children with Down syndrome also have a diagnosis of childhood apraxia of speech. However, this statistic may not be well known among families and speech-language pathologists.

My daughter, Jaycee, has Down syndrome and childhood apraxia of speech. She was diagnosed with severe CAS about 5 years ago. By sharing our experiences, I hope you can better understand the red flags and issues involved with the diagnosis of CAS.

Here are some red flags I noticed in Jaycee from birth-3 years:
-She babbled very little as a baby. If she did babble it was something simple like "dada" with no long strings of varying consonant sounds.
-Jaycee babbled "dada" around 10 months old. I was so excited to hear this, however she didn't add anything else to this babbling for months and months.
-Jaycee was able to learn and use sign language well. By the time she was 3, she knew well over 100 signs. Yet, she couldn't say something simple like mama.
-Her first word was "bye-bye" at 29 months old.
-By the time she was 3, Jaycee identified several colors, knew several shapes, and could identify several body parts. Her receptive language was far better than her expressive language, which is a hallmark of CAS for any child with or without Down syndrome.
-Her spoken vocabulary at age 3 was limited to dada, papa, bye-bye while her signing vocabulary was growing rapidly.
-When I did have Jaycee try to imitate sounds/words, she displayed oral groping-when the child moves her lips or tongues in an effort to figure out how to produce a sound.
-She had great difficulty learning to drink from a straw. It took months of practice for her to learn to put her lips around the straw and suck liquid up. She might do it once but not be able to do it again. Only through months of repetition did she finally learn how to do it.
-Jaycee had lots of feeding issues as a toddler. She gagged on many textures to the point where she vomited! This occurred daily for months. Jaycee was finally off of baby food by age 2. But she was a disordered eater for a long time, unable to tolerate mixed textures like spaghetti. Things like green beans or applesauce were fine but pizza was hard for her to eat and enjoy. (She is way past all these feeding issues now!!!)

By the time she was 3, I was convinced that Jaycee had CAS. The problem was she was young to be diagnosed, especially since she had Down syndrome. When I mentioned it to her therapists or other therapists I knew, no one agreed with me. They told me she would be a late talker because of her Down syndrome. They told me to give it time. But, I knew a child who could sign to tell me the alphabet and could sign 15 different animal names correctly but couldn't imitate a /m/ wasn't normal for Down syndrome.

I let it go and started addressing it myself. I started to work with her at home using the Kaufman Speech Praxis Kit 1 and using exercises recommended by Talk Tools. It was painful! She barely made any progress. Jaycee basically made vowel approximates for every word leaving any consonants off, if she would even attempt the word I was targeting. Speech imitation was almost non-existent at first. I read up on CAS and Down syndrome and investigated techniques that could help her.

Finally around 4.5 years old, I requested an evaluation with a speech-language pathologist (SLP) at the closest Children's hospital. This SLP assured me that she had experience with both Down syndrome and CAS and would be able to determine if Jaycee had it. A few months later, Jaycee was tested and the diagnosis of severe CAS was given with the recommendation for intensive speech therapy following an apraxia treatment approach. Due to the severity of her CAS and good receptive language, a communication device was recommended since this SLP believed that Jaycee would struggle to learn to speak for a very long time. (She was right!)

Today, Jaycee has had her communication device for about 5.5 years. It has greatly improved the quality of her life as she can talk about more topics and with more people than with just sign language.

Jaycee's home screen on her communication device

Speaking is still difficult for her. She tries more things but it's just hard for her. Her speech is still severely delayed. Most 2 year olds have a larger vocabulary than Jaycee. She says about 20 words clearly now. Some words she can say now are: dada, bye-bye, papa, mama, bubba (brother), hot, hop, Anna, hi. Some less clear words she says are: please ("s"), you ("ew"), love ("uh"), Leah ("ah"), and Joel ("oh"). She tries to sing along to songs now using mostly vowel sounds, but it is great to hear her voice more often.

It is important to note that Jaycee has a severe case of CAS. CAS can range in severity from mild to severe. Children with CAS can make progress and learn to speak. Jaycee is just one example.

I hope by sharing these things about CAS, parents will learn that this can happen with Down syndrome and it is difficult to get a diagnosis so look for the right person who can help you.

My advice is that if a child with Down syndrome is not talking by age 5, they should be comprehensively evaluated to rule out CAS. Of course, hearing should be evaluated first as this is another common issue that could affect speech development. CAS is difficult to diagnose in any small child but especially Down syndrome. It is easy for professionals to blame the child's lack of verbal speech on a language delay, intellectual disability, or on weak oral muscles due to hypotonia associated with Down syndrome. Therefore, a speech-language pathologist with experience diagnosing CAS is essential in order for a diagnosis to be made. There are many hallmarks of CAS that are true regardless of Down syndrome or not, so a definitive diagnosis can be made.

This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

Happy Down Syndrome Awareness Month!!

Hip-hip-hooray!!!

It's the month we have been waiting for all year- Down syndrome Awareness Month!

Down syndrome Awareness Month is important to our family because my daughter has Down syndrome. Jaycee is my 10 year old sweetie, a big sister to Elijah, and a friend to many.

Ten years ago, Jaycee was diagnosed with Down syndrome at birth. When I got the news, I was scared and frightened about the future of her life and mine. I didn't know many things about Down syndrome, but the few things I did know weren't positive. The interaction from doctors in the NICU weren't positive either. But that was a long, long time ago.

Now, I know much more.

I know that even though an extra 21st chromosome is present in a person, the chromosome doesn't define the person.

I know that there are some challenges due to Down syndrome, but there are many rewards and positives too.

I know that Down syndrome initially seems like a really, really big deal. As time goes on, it seems to fade more and more into the background.

I know that Jaycee has a good life, a happy life, and so do I.

I also know now- more than ever- that there is a place where Down syndrome and special needs can coexist peacefully in the Christian faith.

I know there are many people who still don't understand Down syndrome or those with intellectual disabilities, so awareness is still needed.

I know there are many people who have never personally met someone with Down syndrome, and they need to know what I know!

For these reason, I, along with many other bloggers, participate in the 31 for 21 challenge, where we blog all 31 days of October to raise support, understanding, and celebration about Down syndrome and the individuals who have it. Each day this month, I will have new content featuring information about Down syndrome or people with Down syndrome. There will be some guest writers too that I am very excited about.

So stay tuned....