Many expectant parents would like to see a glimpse of the future with their child with Down syndrome/Trisomy 21, beyond the lists of medical possibilities. While each family and individual with Down syndrome is unique, one thing most of us can agree on is that the reality of living with someone with Down syndrome is much different than we imagined on that diagnosis day. And that reality is often remarkably ordinary—including soccer practice, sibling squabbles, birthday parties, and snuggles and popcorn during a movie.
While it’s true that some time usually needs to be devoted to speech or physical therapy visits, those visits become part of a daily routine. Speech therapists who come to our homes often become dear friends, and physical therapy appointments may become that time of day where we run to the grocery store. And while it’s also true that our children may have medical issues, some more or less than others, the time spent dealing with those medical conditions is usually a very small slice of a much bigger pie.
Once our children with Down syndrome start developing their own identities, it can sometimes be shocking how they shed those identities we originally envision as new and expectant parents. When my own son was born, I remember writing down everything that scared me: people making fun of him, having other children, having him live with us as an adult, and losing the vision of a child going to college and having a career.
Now at 14, he’s very popular — boys from school show up at my house to play basketball and give him “bro hugs” at the bike trail when they run into him. He has two younger sisters who are 11 and 7, and our biggest challenge there is making sure the girls don’t go in his room without asking and making sure he doesn’t call his younger sisters “embarrassing” and “annoying.” And even though I’m fairly certain he’ll need some help as an adult, he already keeps bags packed in his closet hoping that he’ll get to move to the beach with his best friend someday. There are also now 260 college programs for students with developmental disabilities, and Andy is determined to go and is establishing himself as photographer. We also spend our summers as a family on the mountain bike trails.
Andy Bites Edit from southernj on Vimeo.
If you had told me all of this when I was a scared 23-year-old first receiving the diagnosis, I never could have pictured that this was what the future held.
See also: Adjusting to a Down Syndrome Diagnosis chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”
Here are examples of people with Down syndrome doing ordinary and extraordinary things in their daily lives:
Reflections from parents about the daily life of their families after having a child with Down syndrome.
From Nancy, talking about her 6-year-old daughter Gabby who was prenatally diagnosed with Down syndrome and a heart defect:
My fourth daughter Gabby is now 5 1/2. We received our prenatal diagnosis of Down syndrome and a heart defect (AVSD) six years ago.
Today Gabby is a healthy, vivacious kindergartener. She is in a special needs class, but next year she will go to a typical first grade. She is learning how to read, write, and count. She has occupational therapy at school to work on her fine motor skills, and speech at school to work on clarity and conversation.
Gabby loves Barney and Caillou, as well as drawing, reading books, and playing with her sisters. She also loves the water, playgrounds, and the school bus. She is very active, and just received her first belt in karate.
Gabby is extremely social, with a big focus on greetings and departures. She never leaves anyone out when she says her goodbyes, and insits that everyone say proper goodbyes to guests that are leaving (and she will prompt you if you forget).
We just returned from our first trip to Disney World, something that was priceless to Gabby. She loved meeting all of the characters, but hands down the best time for all of us was seeing and meeting Barney. All eyes were on Gabby – we all wanted to see that moment and we were not disappointed. She was so excited!
Gabby has no real medical issues at this point, but she sees several specialists once a year, or more or less often depending on the specialist, just to make sure everything is OK. We are still in the process of potty training, and the flop and drop technique is sometimes a challenge.
The thing I love most about Gabby is the excitement she has for so many things. She is truly joyous in the way she takes in the world, and it is infectious. Sometimes it is hard to know what is best for her in terms of education, but we will always know that being active in the world is best for her in terms of enjoying life.
We are in a good place now, and I believe we will continue to be optimistic about the future.
From Tara, describing her sixth child who is nearly two and has Down syndrome:
Simeon (Eon) is our sixth child and third son. He is now 21 months-old.
First of all, he is a complete joy. He is adored by his older siblings and recently began relishing the role of big brother with the birth of a little sister just one week ago.
When the baby cries, he stops what he is doing and comforts her by gently stroking her head.
He knows the signs for each of siblings and cracks us up when he “calls” them by emphatically doing their sign … when they’re in the other room!
His favorite time is play time with Dad and his brothers (3 and 5-years-old). They play fight and when any of them “punches” Eon, he says, “Whoa” and falls over.
Eon receives PT & Speech therapies in our home one time a week. The therapists are like family, and we look forward to their visits. He is now walking, feeding himself, saying some words, and using sign language to communicate.
We love all of our kids, but we have never enjoyed a child as much as we do Eon. He is a huge blessing to us and we wouldn’t change him for the world!
From Sharon, talking about her 3-year-old son, Brennan, who is very healthy and enjoys life like most toddlers:
My son, Brennan, will turn 3 at the end of March. When he was born, we were given a laundry list of health problems that he was going to have … heart defect, hearing loss, vision impairment, ear infections, thyroid issues, etc. To date, he has not had an ear infection, has a healthy heart, perfect vision and hearing, and no thyroid issues. Basically, he has been the healthiest of my four children. Though this may not be the case for all kids with Down syndrome — it is important to realize that doctors usually tell parents of kids with Down syndrome every possible health concern — but that doesn’t mean your child will have all, if any, of them.
Brennan loves music, dancing, puzzles, stacking blocks, going to the beach, going to the pool, sledding and saying “hi” and “bye” to everyone he sees with a big smile and a wave. He has the best belly laugh and a great sense of humor. He keeps us all laughing. He also adores his siblings, and they truly adore him too. Our life is better, happier, fuller than I ever could have imagined when I first heard the words “we think your son has Down syndrome.” I honestly, truly feel fortunate to have been chosen to be his mom.
From Sue, describing how her 3-year-old son, Jake, is a friendly, flirty little not and gets services to help him overcome his challenges:
Jake is 3 1/2 now and is attending preschool thru the early learning center in our school district. There are 12 students in his class – 4 are typical kids, the rest have a variety of different issues. He loves school and his teacher and aides. He has a special bond with one of the peers and plays with him the most. Jake recieves all of his therapy at school which is awesome. He gets 90 minutes of speech, 60 minutes of OT, and 15 minutes of PT per weeks. School is offered to him 4 mornings a week.
Jake really loves playing with his 3 older siblings, especially his 7-year-old sister. He has just really started to become aware of the other kids and enjoys following them around. There are often a lot of kids here at the house as we live in a kid-friendly neighborhood. He is very speech delayed and is starting to get frustrated when I don’t understand him and can throw a typical 3-year-old tantrum with the best of them. His receptive language is excellent, and he can follow simple directions and knows many body parts and colors.
Jake has an absolutely silly sense of humor and the best belly laugh. He can get me to giggle better than any of my other kids. He is really cute and likes to flirt with everyone. We have our everyday challenges that do require a little extra patience but overall life with Jake really is ‘more alike than different’.
From Christine, talking about how her 20-month-old daughter with Down syndrome is her only child and enjoys singing and signing:
My Olivia is 20 months old today. She is our only child. We had a prenatal diagnosis and like most (but not all) moms, I was terrified. I can truly say, that just about all I worried about has not come true.
Olivia is a pretty little girl who is quite vivacious when she “wants to be”. She can sign the signs to “If you’re happy and you know it,” “Wheels on the Bus,” “Itsey, bitsey spider,” and a couple of songs in Spanish. Plus she knows about 10 other signs.
She is working on her crawling and walking. Yes, both at the same time. She crawls around how she wants to crawl and gets to what she wants. I love watching her explore her toy bin. She loves her dog and her daddy. She has a smile that melts my heart. And her hugs … awww … simply heaven.
I can truly say that my life and who I am is better because she has Down syndrome, and I’m not being Pollyanna about it. Are there some rough days? Sure, but there are rough days with any kid! It’s just a little different that’s all and her hugs make up for that difference.
From Stephanie, describing how her oldest son Andy enjoys the average life of a 10-year-old:
Andy is ten-years-old, and he’s definitely his father’s son. He loves mountain biking and joined a club this past year to ride twice a week on our local trails. He’s an amazing photographer, and we certainly see that his talent could be a career path for him someday.
He’s also a typical big brother who picks on his sisters incessantly but defends them and comforts them when they get hurt. Sometimes he’s embarrassed for me to hug him around other people but cuddles me at home. He has lots of friends, loves sleepovers, and loves to hang out with boys in the neighborhood.
He hates homework! … and school is hard for him. His school is wonderful, but he struggles with reading and particularly math. His progress is slow but steady, and we often have to be creative to make it work for him. And he continues to receive speech therapy because his speech is difficult to understand, but I love hearing him speak in long sentences. It seemed like it would never happen, and then it just clicked.
It seems like that a lot. We’ll work and work on something and just when I think it won’t ever happen, it clicks — like when he started riding a bike. Now he’s a pro.
His health is great–he just has some moderate hearing loss and hypothyroidism, which are easy to treat.
Just like my daughters, Andy’s one of kind with his talents, challenges, and interests, but we also see ourselves reflected in him. He’s just great fun, and I wouldn’t trade him for anything.
From Meriah, talking about her 6-month-old, Moxie, who was born at home, is growing and learning:
Moxie is 6 months old now (wow!). While diagnosed via amniocentesis in utero with Down syndrome as well as diffuse fetal hydrops and heart holes, she was born with only Down syndrome. The rest was resolved prior to her homebirth.
Exclusively breastfed, she just started her solids — she’s loving it. She starting to sit up on her own, babbles, and is extremely interactive. Oh! And she *loves* playing in her gym and playing with her music instruments!
From Tricia, explaining that her 6-year-old son, Tyler has dealt with some health issues but enjoys a full life with their family:
Tyler is 6-years-old and our oldest of 3 children. Tyler was diagnosed with Down syndrome by amniocentisis and we found out a short time later that he also had a compelte AV Canal Defect. I was fortunate enough to find support during my pregnancy from a local Down syndrome parent support group called KIIDS. They provided me with information and gave me the opportunity to meet other families and children with Down syndrome before my son was born. By the time Tyler arrived, I felt prepared for the road ahead, and I was eager and anxious to meet my precious baby boy.
Although Tyler has had more health issues to deal with than my daughters, he is very much like any other typical 6 year old. He loves to play with his trucks, he does karate twice a week, plays soccer and adores his two little sisters … most of the time. Tyler can be stubborn and mischievous like any other 6-year-old, but he is also hard working, very funny, extremely loving and the most thoughtful and appreciative of my 3 children. Tyler loves to dance and sing and read books. He loves books now more than ever because he is able to read them on his own. I am so proud of him and all of his accomplishments.
I often remember how devastated I felt upon hearing the diagnosis of Down syndrome and how scared I was for the future ahead of both him and myself. I still worry about things from time to time, but I worry about my girls too. I realize that everything is how it should be, and I couldn’t imagine our family’s life without Tyler in it. He has taught us all so much about life, love and happiness….more than we could ever teach him!
From Tracey, talking about how her daughter struggled at first with a heart defect and feeding but is now a 19-month-old who signs and is constantly moving:
My daughter Emily is the light of my life. We did not have a prenatal diagnosis and were shocked at the list of health problems the doctors thought Emily had a birth. Once she was transferred to a larger hospital we found that many of these issues were not present. Emily was born with AV Canal heart defect and required a g-tube for feeding. She was in the NICU for 6 weeks, and her heart was repaired when she was 4.5 months old. Emily is now a very healthy toddler with occasional follow-up visits with specialists.
Emily is a sweet, loving, slightly stubborn little girl. Her stubbornness is often a positive personality trait when she is learning a new skill. Emily is 19 months old and knows over 50 signs. She says three words consistently. Emily likes to tease me by saying a word once and then waiting a few months to say it again. She is crawling and cruising all over the place. I have not decided if I am looking forward to the day she walks or dreading it, as she is already in to everything.
Emily is a complete joy. She is the apple of her father’s eye and has all of her grandparents wrapped around her little finger.
From Amy, describing how her daughter was prenatally diagnosed with a partial AVSD and how at seven-years-old she is healthy, happy, and popular at school:
My daughter Abigail (age 7) is the source of so much joy in our house. She was diagnosed prenatally around 20 weeks and we then discovered a partial AV canal (heart defect). That pretty much blew the diagnosis of DS into the background for us — our mission became to make sure she was a happy, healthy kid. She was so easy to love from the very first — affectionate, loyal, sweet-natured, and so determined. The first few years, with the heart defect under observation, she was generally healthy but had some ENT/upper respiratory issues that are very common in the Down syndrome population. However, she had great energy, even with the heart issue. She crawled at 12 months, walked at 26 months, and knew about 30 signs by age 2. Talking took longer, more than one word at any time, anyway, and her speech still can be a bit hard to understand, but it’s there. She sometimes surprises us with a really well-spoken sentence or question. Yesterday’s phrase of the day was “Hey, hey, where’s the cake?” after dinner.
Today, 4 years after open-heart surgery at CHOP (love that hospital!), she is a vivacious, laughing little girl. She loves all things princess, Disney, and pink. She dances, and a local TV station recently did a really great piece on Abigail and her former dance school (we just moved to OR from NJ), showing how alike she is to her peers rather than unlike.
Her big sister Emily (age 10) and she have a great bond — no school this week, so they had a sleepover together last night.
Abigail is fully included in a regular first grade classroom (there is an aide in the class to help her out), and she’s one of the most popular kids in her class. I say this only 4 weeks after arriving in Portland – the kids here are taking to her so easily, but that was our experience in NJ as well. She reads at an end-of-kindergarten level, and she’s so proud when she figures out a new word.
From Amy, speaking from the heart about her nearly 1-year-old son, Dylan, who had surgery for duodenal atresia and is now a determined, cute, playful child and also somewhat delayed:
My sweet little man, Dylan, is 11 months old. We found out via diagnostic ultrasound and amniocentesis that he was going to be born with “designer genes.” We were scared to death at first– what did this mean for him? Will he ever experience life the way our older son has gotten to? Will he have the same opportunities? Will he live with us forever?
I don’t have the answers to all of these questions yet, but I can tell you about my sweet angel. He is absolutely wonderful. He was born at 37 weeks, weighing a tiny 5 lbs 0 oz, and measuring in at 18 inches long. He surprised us by being so tiny and having the cutest sprig of blond hair standing up on the back of his perfect-never-been-in-the-birth-canal-c-section head. I will let you know a little secret – I didn’t know before he was born if I could bond with him. I also thought (I’m ashamed of this, but it’s the truth, so here goes…) “What if he’s ugly?” Oh mamas and daddies … he was the most beautiful thing in the world to me. I looked at him, and I saw my features! My lips, my nose, my chin! He was so mine. I bonded instantly, which (again, being honest) I didn’t with my first child (it took me a few weeks to fully bond with him, as I was overwhelmed and didn’t know what in the world I was doing!).
He did spend a month in the NICU recovering from doudenal atresia repair surgery and then learning how to eat. We also got sent back to the hospital a mere 2 weeks after being sent home the first time because he was having jaundice issues. But after that second hospitalization, he has been as healthy as healthy can be! We haven’t had so much as an ear infection. He’s a little anemic, but we’re taking care of that with iron supplements.
Now, my kiddo is obviously developmentally delayed. But you know what? That’s all it is. He is hitting milestones, but at a slower pace. He is just like my “typical” son, but he’s just taking his dear, sweet time. The world of Down syndrome I envisioned is not the world of Down syndrome in which I’m actually living! And? I am loving the extended baby time. I love love love that he’s not crawling all over the place, getting into things yet.
And, oh, my child’s temperament. You couldn’t ask for a more calm, precious child. He almost never cries at all … and when he does, rest assured it’s one of three things: he’s hungry, he’s tired, or he needs a diaper change. He has started to laugh when he thinks something is funny. He gives kisses and hugs, which are what I live for! He chews on any and every single thing, so I’m guessing we have teeth coming up soon. He rolls wherever he wants to go. He plays with his toys and just adores his big brother. Oh, and even though he’s precious and wonderful and perfect, he’s also as stubborn as can be! It has to be his idea to try something, or he’s not going to try it. (IE: sitting up, babbling a certain sound, taking a toy, etc.) If it’s his idea, he will do it with no questions. I tease with my friend (who is a speech and language pathologist and an audiologist who has worked with kids with Down syndrome for a long time) that the 21st chromosome is the stubborn chromosome, and they’re triply blessed!
I don’t have all the answers, and I can’t give you a huge glimpse into the future. But I can tell you that I didn’t realize what a blessing I was receiving when I was pregnant. I’m so, so glad this angel has been given to me, and I wouldn’t change a single thing.
From Sarah, explaining how her 14-year-old son with Down syndrome is girl crazy and acts like a typical teen:
Adam is 14 and is the middle of our three kids. While he does require more of my time than a typical 14-year -old to assist with schoolwork and attend to health matters, I can honestly say that right now he is the easiest of our three kids. His needs are clearer, and the relationship is simpler too.
He is girl crazy and has a girlfriend, at least sometimes! He does very well at middle school where he is largely included in the typical classes and social life. He loves basketball, movies, swimming and reading. He takes guitar lessons and is showing nice improvement.
Really, our slice of life is much as I had pictured years ago when imagining our life with three kids, before I learned that Down syndrome would be a part of it. It’s more challenging in some respects but that isn’t due to Down syndrome as much as it’s due to having three adolescents!
From Heather, talking about how normal life is with her 8-year-old daughter:
My little girl is 8 years old now. She just finished singing in the kid’s choir for our church Christmas production (5 shows in a row!). She’s loving her swimming lessons and ballet class. She’s well known throughout school. Life is so normal!
From Megan, describing how she read stories when she was pregnant about the normal lives of parents who have children with Down syndrome, and now she’s one of them with her 3-month-old daughter:
I first read this article while an expectant parent, and now, my slice of life includes Ellie. Other than a three-week NICU stay, our life is fairly normal. Ellie is almost three months old. She plays with her grandparents while I am at work, then I come home and we go for a run. She loves being in the jogging stroller, she’s starting to like the pool, she has PT once a week, and she is pretty much a typical spoiled first grandbaby!