Today is the first day of Down Syndrome Awareness Month! Once upon a time, it meant nothing to me. That changed the moment we received our son’s Down syndrome diagnosis when he was a few weeks old. Now our family spends the month of October educating others about what Down syndrome REALLY is.
Many people claim to have knowledge about Down syndrome, but the reality is that they are still holding on to outdated information or an experience that occurred before all the changes in the past decade. And there are some people who can’t even look past the diagnosis. For my family, the difficulty with Down syndrome does not exist within the home. It exists in the world around us.
Every October, families who are blessed – yes, I said BLESSED – by Down syndrome work tirelessly to educate others about the most common chromosomal condition. It is our hope that we will be able to change perceptions and make the world a better place for ALL of our children. Whether they have 46 chromosomes or 47, they all deserve to be here!
Before I introduce you to the boy who brightens my world, there are a few basic facts you should know about Down syndrome:
- Down syndrome occurs when someone has a full or partial extra copy of the chromosome 21. There are three types of Ds: Trisomy 21 (the most common), Translocation and Mosaicism.
- Down syndrome happens by chance in almost all cases. Only 1% of all cases is hereditary.
- Down syndrome occurs at conception, and the parents did not do anything to cause it. It is not contagious, and it will not go away.
- Down syndrome occurs in people of all races and economic levels. Although advanced maternal age increases the chance of having a child with Down syndrome, over 80% of babies with Ds are born to women UNDER the age of 35 (like me)! It literally can – and does – happen to anyone.
Now that you have the basic facts, it’s time to meet Liam, and find out exactly why he is more alike than different!
- He has arms, legs, a head, and a body. After all, he is a human being, and Down syndrome is just a small piece of his genetic makeup.
- Like 8% of the world’s population, he has beautiful blue eyes with impossibly long eyelashes.
- He has dark blond hair, just like many others. Like other kids his age, he does NOT like to sit still to have it cut!
- Liam has 24 teeth, which get brushed 3 times a day, and checked and cleaned by the dentist twice a year.
- He looks just like his big brother. He does not have every physical trait of Down syndrome, and resembles his family more than he resembles his peers who have Ds.
- Liam’s social skills are top-notch. He loves to play with kids of ALL abilities, and can make friends wherever he goes!
- Bath time is still a favorite! When he’s done, he gets out on his own and dries himself off, taking extra care to make sure his feet and toes are dry.
- He can dress himself and he has his own style (bow ties for life).
- He loves to eat, because let’s face it…food is good! Favorite foods include watermelon, applesauce, pasta, chicken noodle soup and Doritos! At each meal, he feeds himself with a fork and a spoon.
- He attends preschool 3 afternoons a week, like other kids his age. I drop him off and pick him up, and he walks into school all by himself.
- He has chores, too. He has to clean up his toys, put his dishes in the sink, and throw away his garbage, just like his older siblings.
- Playing outside is his favorite thing to do, because the fresh air and the wide open space makes him so happy! Reading and playing with toys are two more of his favorite things. He loves books, puzzles, blocks, trucks, cars, trains, animals, and musical instruments.
- He can walk, run, jump and climb. His endless energy is impressive, and he loves to explore his world!
- He can talk. Actually, he can talk through words AND sign language, which makes him better able to communicate with a higher percentage of people than the majority of the population!
- Although he’s happy the majority of the time, he still feels every emotion. He gets mad when something doesn’t go his way, and he gets sad if he gets hurt or if someone is mean to him. He smiles, laughs, pouts, yells, and cries.
- Liam uses the potty, and his enthusiasm and excitement over every milestone is contagious.
- He sleeps in his own bed and gets the recommended 10-13 hours of sleep each day.
- Liam loves music and dancing. At the age of 4, he already has strong preferences, he’s very musically inclined, and already knows how to strum a guitar.
- He is 100% healthy and doesn’t get sick often. He visits his pediatrician for a well check each year, and goes to the eye doctor and dentist, too. The only difference is that he attends a Down syndrome clinic each year, and gets a few yearly tests as a preventative measure.
- Liam is the most loving child! He loves to give and receive affection, just like any other human being. Hugs, kisses, and huge smiles are his favorite ways to connect with others. We are beyond blessed by his unconditional love, positive attitude, and contagious joy.
- Liam is a vital part of our family. He makes us happy, he fits in, he does everything that we do, and he is loved beyond measure! We are proud of him and have high expectations for his future, because he CAN. He has a huge support system made up of family and friends all over the world. They love him, accept him EXACTLY how he is, and fight to make this world a better, more accepting place for people Liam, and all those rocking an extra chromosome!
Every October, I share a fact each day about Down syndrome. But this year, my goal is to humanize Down syndrome by showing Liam living his life just like every other human being. My hope is that people will look past the diagnosis, and see who he really is! And that person is someone worth getting to know, because he is special!