Our family learned a lot about Down Syndrome over the past year. We wanted to share CORRECT information with our family and friends. Every day in October, I posted a fact about Down Syndrome and a picture of Liam.
People with Down Syndrome are PEOPLE. They are individuals who deserve to be a part of this world. Their existence shouldn't be questioned. Their futures are brighter than ever before. They are living long, happy, healthy lives. They can and do graduate from high school, attend college, have many talents, work, date, marry, live on their own, and contribute to their community. They are people, just like you and me.
Our reality is not all rainbows and unicorns, but I'm realistic enough to know that not everything in life is going to be perfect. I'm happily embracing this journey and I'm absolutely in love with our perfectly imperfect, beautiful boy!
After I had Liam and met many of his new friends, I realized everything I thought I knew about Down Syndrome was wrong. Liam is a beautiful soul with incredible joy. Thanks to early intervention and more awareness, Liam has a bright future ahead of him.
Despite that extra chromosome, he is just like you and me. There will be challenges ahead of him. He's going to have to work harder to reach milestones and goals. But life isn't easy for ANY of us. We all have challenges.
13 months ago, I thought life as I knew it was over. I was worried, afraid, and depressed. I didn't focus on the beautiful baby in my arms. It only took a few hours before I realized just how special our little guy was.
Life didn't change in the way I expected. It got so much better! I can't even imagine a world without his breathtaking smile! Liam is on a mission to show the world that people with Down Syndrome can and DO live happy, healthy lives!
The exact numbers are different depending on where you get your information, but at least HALF of all babies born with Down Syndrome have a heart defect. Shortly after Liam's birth, the doctor sat down and informed us of his suspicions. He then told us that Liam needed to have testing done immediately, because 4 out of every 7 babies born with DS have a heart defect. We were already in shock, then our baby was taken from us for hours. All we could do was cry, worry, and cry some more.
Thankfully, Liam's heart is perfect!
There are those who say all people with Down Syndrome look alike. They do share similar traits, but people with Down Syndrome look more like their family members than each other. Liam looks just like Lily and Dylan!
From the NDSS: "A few of the common physical traits of DS are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with DS is a unique individual and may possess these characteristics to different degrees or not at all."
Liam has those gorgeous eyes and he is tiny! At 13 months old, he is 15 1/2 lbs, 28 inches tall, and wearing 3-6 month clothing. He may be tiny, but he is MIGHTY!
"Babies with Down Syndrome often get teeth later than babies without Down Syndrome. They usually get their first tooth at 12-14 months, but may get the first tooth as late as 24 months.Their teeth tend to erupt in a different order than in children without Down Syndrome."
Liam got his first tooth 2 weeks ago, at 13 months. It was a bottom front tooth, which is the norm. Two weeks later, his top 2 molars broke through! Yes...out of order!
Many people believe the majority of mothers who give birth to a child with Down Syndrome are over the age of 35. WRONG! Although the chances of having a child with Down Syndrome increase after the age of 35, 80% of children with Down Syndrome are born to women UNDER 35 years of age!
Down Syndrome is the most common genetic condition. 1 in every 691 babies is born with Down Syndrome. Our doctor told us that chance and we never thought it would happen to us. Liam is that 1. It was so unexpected, but I am so thankful for him!
"There are 3 types of Down Syndrome: trisomy 21 (nondisjunction), translocation and mosaicism.
Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called trisomy 21.
Mosaicism occurs when nondisjunction of chromosome 21 takes place in one - but not all - of the initial cell divisions after fertilization. When this occurs, there is a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47. Those cells with 47 chromosomes contain an extra chromosome 21.
Translocation accounts for about 4% of all cases of Down syndrome. In translocation, part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an extra part of chromosome 21 causes the characteristics of Down syndrome."
Liam has Trisomy 21.
"Down syndrome is a genetic condition, but only 1% of all cases of Down syndrome have a hereditary component (passed from parent to child through the genes). Heridity is not a factor in trisomy 21 (nondisjunction) and mosaicism. Most cases are sporadic - chance - events."
There are many people that believe a child has Down Syndrome because of something the mother did during pregnancy. Not true. When Liam was conceived, I was 32. I don't drink, smoke, or do drugs...ever. I was eating healthy, exercising 4-5 days a week, and taking a prenatal vitamin. My favorite comment was someone who said my morning sickness must have given him Down Syndrome!
At our first appointment at the DS Clinic, Liam's doctor told us he was going to give us information about genetic counseling if we wanted to talk to someone. I asked how that would even help if it was just a chance event. He replied, "I can't say what I think, but..." He proceeded to smile and nod.
Liam was a chance event. I would take several more just like him!
"Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome." In 1985, the life expectancy was 25. Today, the average life expectancy is over 60.
As little as 25 years ago, people with Down Syndrome were institutionalized. Thank God that changed! Today, they live at home with their families, participate in community activities, participate in sports, attend public schools, and have jobs. Liam's diagnosis didn't change our lifestyle in any way. We are raising him the same way we are raising Dylan, Lexie, and Lily. We focus on Liam as a person, not his diagnosis.
There are over 400,000 people with Down Syndrome living in the United States.*
Down syndrome occurs in people of all races and economic levels.*
People with Down syndrome socialize and have meaningful friendships. Some choose to date, form ongoing relationships and marry.*
Most children with Down syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different.*
Early Intervention makes a HUGE difference. Most children start therapy when they are infants.
Liam receives therapy in our home. He started occupational therapy when he was 2 months old to help with his supplemental bottle feeding and weight gain. She comes to our house once a week, and we're working on fine motor skills now.
When he was 7 months old, he started physical therapy, which is also once a week. He was so tiny that a nutritionist came once a month between 6-9 months, but he "graduated" from that service thanks to his eating skills (this kid loves food, but gains weight slowly). At 14 months old, he started speech therapy once a week.
He will receive therapy in our home until he is 3. We love his therapists and we can see how much they help! Early intervention helps people with Down Syndrome reach their full potential!
"Children with Down syndrome have been included in regular academic classrooms in schools across the country. The current trend in education is for full inclusion in the social and educational life of the community.
Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and even receive college degrees."
I was thrilled to run into a little boy with Down Syndrome at Lexie's book fair. He was in a typical classroom, and was having so much fun talking to his friends. While I can't say what the future will hold for Liam, I do believe in inclusion. I truly believe it benefits children with Down Syndrome and benefits typical children!
"Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives." Liam has all that and more!
It is a myth that people with Down Syndrome are ALWAYS happy. They are people, and they have good days and bad days. They get tired. They get hungry. They feel pain. They get sick. They get frustrated. I'm not going to lie....Liam IS happy about 98% of the time. But when he gets tired or hungry, or has a poopy diaper, he can really pout.
Down Syndrome is diagnosed prenatally using a screening test which gives you a probability, followed by a diagnostic test if the probability is high. It is also diagnosed at birth, based on certain physical characteristics. A chromosomal analysis called a karyotype is done to confirm the diagnosis.
According to my age when I was pregnant with Liam, I had a 1 in 720 chance of having a child with Down Syndrome. The chance of miscarrying during a diagnostic test is 1 in 100. We took our chances, knowing the results wouldn't change anything.
At the 20 week ultrasound, we were told our baby was "textbook perfect." At birth, 2 doctors suspected Liam had Down Syndrome, while 2 others didn't think he did. The karyotype confirmed the diagnosis 2 weeks later. I now have a new view on perfection!
"People with Down syndrome may have large tongues or they may have an average size tongue and a small upper jaw that makes their tongue too large for their mouth." A protruding tongue can also be a sign of low muscle tone. Liam tends to stick out his tongue at times, but not all the time, so his speech therapist thinks it's a muscle tone issue. She is working on lots of "B" and "P" sounds with him to help get it in the correct position!
Narrow ear canals are a common issue for children with Down Syndrome. Ear canals grow with age, and may no longer be a concern after age 3. There is also an increased risk for ear infections and hearing loss, often due to wax buildup. Yearly hearing screens and yearly wax removal (if necessary) are recommended procedures. Liam has tiny ear canals. They couldn't even see in them until he was 6 months old, and it's still difficult. Thankfully, Liam has only had 2 ear infections! He passed his hearing screens, but he will see an ENT and have a hearing test every year.
Did you know there are actually health benefits that come with Down Syndrome?
Liam's amazing doctor at the Down Syndrome Center wrote a post for Down Syndrome Awareness Month, and included these facts: People with Down syndrome do not seem to get solid organ tumors or diagnosed with lung or colon cancer. People with Down syndrome don’t seem to get atherosclerotic disease in their hearts, which cause heart attacks. There is a very low incidence of high blood pressure (or hypertension) in people with Down syndrome. The response to the treatment of certain conditions, including certain types of leukemia, are actually better in children with Down syndrome than in the general population. Children with Down syndrome recover from certain types of pediatric heart surgeries better than other children. (Full post found here.)
There is so much negativity regarding the health of people with Down Syndrome, but many are actually 100% healthy! Like this little man!
It takes a lot to offend me, but to many parents of children with Down Syndrome, the term Downs Baby/Downs Child is offensive. Sadly, many medical professionals still say it. Just remember: person first! I can understand their reasoning. People don't walk around saying "Cerebral Palsy Baby" or "Cancer Child" because it's just plain wrong. It should be the same for children with Down Syndrome.
Person first. This is Liam. He's 14 months old and he LOVES to be outside. He has Down Syndrome. Down Syndrome does not own him or define him. It is just a small piece of the person he is!
Down Syndrome is not a disease. It is not contagious, and it can't be cured. It is simply a genetic condition. Although the very real possibility of gene therapy is on the horizon, it still won't magically go away. I honestly wouldn't want it to. Down Syndrome is part of Liam. I love EVERYTHING about this boy!
People with Down Syndrome can and do live independently. I don't know what the future holds for Liam, but I do hope I get to see that sweet face every day! Hear that, Liam? Mommy will visit you every single day!!!!
Children with Down Syndrome are very much like children without Down Syndrome. They may have a genetic condition, but they are individuals. They have likes and dislikes. They get excited about things, and feel sad about things. They love to play and socialize and do everything typical children do. It may take them a bit longer to reach milestones, potty train, and talk, but parents should never put limitations on them. People with Down Syndrome are achieving things these days that people don't think are possible! I truly believe raising Liam like his siblings and letting him do everything they do is only going to benefit him!
One of my biggest pet peeves is when people comment about how ALL people with Down Syndrome are overweight. While they are prone to thyroid issues, they do come in all shapes and sizes, just like any other person.
A person does not "suffer" from Down Syndrome. I can assure you that Liam is not suffering in any way. I can absolutely assure you that the family and friends that surround him are not suffering. A lot of us could take a cue from Liam and just live, love, smile, and be happy.
The majority of people who have a sibling with Down Syndrome love their sibling very much. They do not feel resentful toward them or wish they were never born.
Quite the contrary. Many say their sibling with Down Syndrome was one of the best things to happen to their family.
Dylan, Lexie, and Lily adore their baby brother. Dylan and Lexie know he has Down Syndrome and understand what it means. They are so proud and supportive of him. Although Lily doesn't understand what Down Syndrome means, she loves Liam very much. There hasn't been any resentment or jealousy, and she calls him "my buddy, Liam." When he cries or gets upset, she stands up for him.
I'm so proud of all four of these kids! They share a strong bond and love each other very much. I pray that they are just as loving with each other when they're adults!
92% of parents who are given a prenatal diagnosis of Down Syndrome choose to abort. They are given outdated information and even obstetricians will recommend abortion so their child doesn't "suffer" or interrupt their lifestyle.
There is still a lot of ignorance regarding Down Syndrome, and a lot people don't really know what it is. Down Syndrome is not what it used to be. People with Down Syndrome can and do live long, happy, healthy, normal lives.
I'm not one to get political, but I will say that it makes me incredibly sad that only 8% of those parents believe their child deserves a chance. Life isn't supposed to be perfect. If we remove all the "imperfections" we will lose our compassion and humanity.
Liam is one of the lucky few who survived the womb, and he gets a chance to show the world that Down Syndrome is nothing to fear. I believe in this boy with all my heart.
Down Syndrome is not the dreaded, scary monster that many make it out to be. Yes, there are obstacles, but everyone has hurdles to overcome. Other than this month, I rarely focus on Down Syndrome. I may mention it on occasion, but it's just a small part of who he is. This HAPPY, HEALTHY little boy blessed our lives in so many ways. We're not suffering, he's not suffering, and he is not a nuisance or a burden. He is loved by so many, some of whom we'll never meet. We thank you all for your love and support!
*The starred facts and quotes were found on National Down Syndrome Society's website. Please visit this informative site to learn more about Down Syndrome.