Myths about down syndrome

Truth: In most cases, people with Down syndrome actually have a small oral cavity and a normal-sized tongue. 

Studies have been done using objective X-ray measures that “suggest that macroglossia in Down syndrome is an illusion due to the small size of the oral cavity.” Not only that, but many children and adults with DS have trouble breathing through their noses due to structural issues with their mouth, nose, and airways. For example, some people with DS have a very high palate coupled with a collapsed nose bridge. So, by sticking their tongues out, they are getting better airflow. (This is the case with our son Will.)

There are things that can be done to help in this area. More and more airway dentists are suggesting palate expansion and other therapies as a means to help widen the jaw and make room for the tongue. Additionally, there are speech therapists who have expertise in oral motor function who can help strengthen the jaw, lips, cheeks, and tongue. 

Personal note: Will has a high palate, a small oral cavity, and some jaw instability due to low muscle strength and tone. Exercises have helped him with strength. And we will be looking into palate expansion soon. 

The more we learn about the anatomy of our kids, the better equipped we are to get them the help they need to thrive. And that’s exciting!!

Truth: People with Down syndrome experience a full range of emotions, just like you and me! Maybe what you see as “happy all the time” is actually emotional maturity, unconditional love, and the ability to see beauty even in hardship and to delight in life in a way that we can’t comprehend. 

Many in the Down syndrome community are rightly offended by this myth because no one should be reduced to one emotion. It oversimplifies a gift they possess that some of us just can’t grasp. And when people don’t understand something, they often dismiss it.

People with DS can experience feelings of anger, depression, and sadness along with every other emotion you or I feel. Life gets to them the same way it gets to me and you. And in some instances, the weight of the world is even heavier on them because they feel the sting of a world that tells them they don’t belong. 

Personal note: As a toddler, Will is happy a lot. It’s true. But he’s also sad, angry, frustrated, bored, mischievous, curious, peaceful, annoyed, content, resigned, worried, afraid, and so much more! 

I’ve watched Will push through his fear or sadness and smile. I’ve watched him go from crying to laughing at the doctor, and I swear he’s doing it out of compassion for the nurse or doctor. And he doesn’t sit with negative emotions as long as those of us with 46 chromosomes might. That’s not “happy all the time.” That’s emotional maturity. It’s unconditional love and forgiveness. It’s not holding a grudge. It’s the ability to delight in the world around him without caring what others think. 

So instead of making statements that reduce and dehumanize, let’s celebrate what is actually a beautiful gift. And let’s try to learn from them.

Truth: While it might be true that being older increases your chance of having a baby with Down syndrome, 80% of babies with Down syndrome have moms who are younger than 35. Down syndrome occurs quite randomly. 

And you know what? It doesn’t matter. All human beings are precious gifts, regardless of their number of chromosomes or the age of their mothers! 

Personal note: I was older. I actually had four babies after I turned 35, which is considered “advanced maternal age.” Our youngest, Will, was born when I was 49. So I was an older mom, but that’s not why he has Down syndrome. I know moms in their 20s who have children with DS too! I think people try to figure things out sometimes that are not explainable as opposed to just trying to see the beauty in the path they’ve been chosen to take. 

Truth: We have people in the DS community who are in college, run businesses, and excel in sports and the arts. A quick Internet search will show people with DS who are models, actors, athletes, chefs, spouses, and so much more. People with Down syndrome are unique, just like you and I are. Some need more help than others, and that’s okay too. Each person with Down syndrome has a God-given purpose in life, and just like the rest of us, their worth is not dependent on what they accomplish. 

Personal note: I have no idea what Will might accomplish one day. Our approach is to help him figure out God’s plan for his life and help him chase his dreams. And regardless, his value will never be dependent on what he can do. His value comes from who he is. He’s a miracle. Created in God’s image, he’s perfect just the way he is. 

Truth: Down syndrome is often accompanied by mild to moderate cognitive delays. Severe delays can also happen. But people with Down syndrome are unique, just like you and I, so you cannot predict their futures based on a stereotype. 

It used to be believed that children with DS would never learn to read, write, or even speak well. But time and parents who believe in their children have taught us that none of those things is 100% true. Just a few decades ago no one even bothered to work on things like reading with children who had DS. And those who could read were seen as the exception and not the rule. Today, kids with DS who cannot read are the exception. 

Some people with Down syndrome are nonverbal, but that has nothing to do with intelligence. We just have to be willing to help people who do not communicate like we do show us what they know and understand. 

Personal note: With Will, we presume competence. He was reading several sight words at age three and continues to surprise us with all he knows. Will does need extra help at times, but we always let him try first and cheer him on no matter what. Presuming competence in people with Down syndrome goes a long way to helping them achieve academic success. The most important thing to remember is that people with DS are unique. 

Truth: People with Down syndrome are unique. Yes, it’s true that they are more likely to have certain medical issues arise. As an example, 50% of people with Down syndrome have some sort of heart defect. But that does not mean that they ALL have [fill in the blank]. 

There are some individuals with Down syndrome who have little to no medical struggles and others who have medical struggles before birth. There is simply no way to predict this.

Medical professionals often try to predict the future for our children before they are even born. This fills the minds of parents with everything that could possibly go wrong instead of just sharing hope and encouragement. No one is guaranteed a perfect life. You could have a child who is born “perfectly healthy” by society’s standards who then encounters health problems or an accident. 

Personal note: Will has had his share of medical issues. He had severe reflux, a hole in his heart, moderate and now mild hearing loss, obstructive sleep apnea, infantile spasms, and neutropenia, which has caused a lot of sickness. But he’s fought through all of this and showed us what it means to persevere. 

Truth: People with Down syndrome are unique. Yes, it’s true that they are more likely to have certain medical issues arise. As an example, 50% of people with Down syndrome have some sort of heart defect. But that does not mean that they ALL have (fill in the blank). 

There are some individuals with Down syndrome who have little to no medical struggles and others who have medical struggles before birth. There is simply no way to predict this.

Often medical professionals try to predict the future for our children before they are even born – filling the minds of parents with everything that could possibly go wrong instead of just sharing hope and encouragement. No one is guaranteed a perfect life. You could have a child who is born “perfectly healthy” by society’s standards who doesn’t stay that way for long. 

Personal note: Will has had his share of medical issues. He had severe reflux, a hole in his heart, moderate and now mile hearing loss, obstructive sleep apnea, infantile spasms, and neutropenia which has caused a lot of sickness. But he’s fought through all of this and showed us what it means to persevere. 

Truth: Down syndrome is not a spectrum. You either have it or you don’t. There are, in fact, three types of Down syndrome (see below), but that extra chromosome affects each and every person differently. Some children may struggle more cognitively or must work harder to gain ground with gross or fine motor skills, and that can give the impression there’s a spectrum. Some have medical challenges that set them back in terms of learning, but that doesn’t mean they can’t or won’t learn. 

Every person with Down syndrome does have hypotonia (low muscle tone), and there is a spectrum there, so perhaps that’s confusing people. 

Personal note: Will has Trisomy 21, which is the most common type of Down syndrome. It means that there is an extra copy of the 21st chromosome on every cell in his body. He has strengths and weaknesses and likes and dislikes, just like everyone else. 

Truth: Down syndrome is not a spectrum. You either have it or you don’t. There are in fact three types of Down syndrome, but that extra chromosome affects each and every person differently. Some children may struggle more cognitively or must work harder to gain ground with gross or fine motor skills and that can give the impression there’s a spectrum. Some have medical challenges that set them back in terms of learning, but that doesn’t mean they can’t or won’t learn. 

Every person with Down syndrome does have hypotonia (low muscle tone) and there is a spectrum there so perhaps that’s confusing people. 

Personal note: Will has Trisomy 21 which is the most common type of Down syndrome. It means that there is an extra copy of the 21st chromosome on every cell in his body. He has strengths and weaknesses, likes and dislikes – just like everyone else. 

Truth: There are three types of Down syndrome. Only one (the rarest form, Translocation) is hereditary. 

1) Trisomy 21: 95% of people who have Down syndrome have Trisomy 21. In this type of Down syndrome, every cell contains an extra copy of the 21st chromosome. This, however, does NOT mean that all people with Down syndrome are the same. That extra chromosome affects every person a little differently.

2) Translocation Down syndrome: This is when a whole or part of the 21st chromosome is attached to another chromosome. Only 3% of people with Down syndrome have Translocation. 

3) Mosaic Down syndrome: This is the least common form of DS and accounts for just 2% of all people who have Down syndrome. This type occurs when the extra 21st chromosome attaches to only some cells.