Confessions of the mom of a child with Down syndrome during the teenage years. Our story is about our own journey, and, of course, each journey is unique.
Warning: some of the videos and photos may induce panic for parents of babies and toddlers who get heart palpitations at the thought of that first date or first job interview sometime during the teenage years. Even though you may question your years of speech therapy after hearing “you ruin my life” the 32nd time, don’t worry, they don’t really mean it.
25 Things I Wish They’d Told Me in the Hospital When My Son Was Diagnosed with Down Syndrome
- There will be photo evidence that your son will be much cooler than you in high school. (But you can comfort yourself by saying that everyone had those bangs and that perm back in the day.)
- If you take him to a Barenaked Ladies concert when he’s 13, be sure to explain that he should expect middle-aged Canadian guys to come onstage. Otherwise, he might be disappointed and think you’re the worst mom ever … like any other teenage boy.
- Once he learns to ride a bike, he will terrify you with how sharp he banks curves. (But don’t worry mom, because he won’t break anything.)
- As your son works toward his Eagle Scout, you will learn WAY MORE about scouting than you imagine, but you will have a wonderful team to help you. There will be boys who treat Andy like their brother and are the ones to invite him to parties, and there will be Scoutmasters and church leaders who dearly love him … even if they refuse to give him a golf cart while hiking down a mountain. And at 17, he will earn his Eagle Scout award just like his 6 uncles and dad before him, and he will uphold that Meredith legacy to make his family proud.
- On the first day Andy was born, you worried that your identity would become lost as the mother of a child with Down syndrome, but as he gets older, you will realize you wouldn’t have it any other way. One of the great things about having him at 23 is that you will grow up together, and you will transform each other. Andy (and the wonderful people who supported your family) will inspire you to create resources for new and expectant parents alongside wonderful colleagues to help support other families learning about a diagnosis (Lettercase and Down Syndrome Pregnancy).
- Get your passport! As you learn to advocate for this baby, you will become so much stronger and find your own voice. On this journey, you will make such wonderful friends, and you will actually visit Russia, Japan, Vancouver, and so many amazing places. And as Andy gets older, he will begin to join you on the most fun road trips and start to find his voice too.
- The charm will be strong with this one. When Andy disappears at the beach one day when he’s 9, the whole family will be really freaked out as you scour the shoreline fearing the worst. But then he’ll appear out of nowhere on a 4-wheeler with a cute lifeguard. Classic Andy.
- Be careful about teaching this boy to text because at 17 he might start conspiring with his best friend to move next door. But it’s much better for him to have his own phone because it will be really embarrassing that time he texts his Scout Master from your phone and tells him, “I love you.” #almostascandal
- People will tell you that kids with Down syndrome are such sweet angels, but you’ll know better. Even though this boy has a loving and kind heart, he will also tease his sisters and friends mercilessly … just like any other kid (check out his hand in the photo). And honestly, you’ll love him even more for being fun than you would if he were “perfect.”
- Get a good dash cam because road trips with this kid are going to be epic.
- You’re going to learn way more than you ever expected about Batman. But you’ll get to be Batmom, so that’s pretty cool.
- Whenever this boy disappears at Target, go check the electronics section.
- Andy will seem so vulnerable and helpless when he’s born, and he will awaken a mama bear in you. You were kind of a doormat before, but you will become fierce when you need to advocate for him. You will be so much better because of that strength he awakens in you. But that’s not all. There will also come a time when that tiny baby becomes a young man, and he will wrap his arms around you and make you feel protected and loved too. He will be just as resilient in his own way, fiercely independent and strong. You will be so proud that he’s your son.
- By the time this boy goes to high school, he will need to know how to make Promposals because he will want to go to every single dance as soon as he’s allowed to date at 16.
- One day this 16-year-old kid will scare the crud out of you when he’s nowhere to be found and his bike is missing. Your mind will go to dark, scary places, but don’t worry. He just rode his bike up the street to find out how to apply for a job at the local grocery store … like he said he wanted to do on the car ride home from school. He wants to work with his friends there. And the store will be so impressed by his initiative that they will hire him as a sophomore in high school, and he will love to work, especially the money that allows him to go on more dates!
- Andy will be an amazing photographer … like his uncles and dad. He will even have a photography exhibit that travels through medical colleges in Russia! It’s true that he will struggle with basic academics, but as he gets older and keeps making slow, steady progress on reading and math, you will also realize that he can build a career out of his other strengths. His future looks bright!
- There will occasionally be people like the swim instructor who will say people like Andy shouldn’t be in her class, and she will break your heart. And then there will be people like his mountain bike coach who put it back together again–people who just accept him and assume he can succeed. In one month of mountain biking with her when he’s eleven, he will go from taking 35 minutes to do the beginner’s loop to 12 minutes. People like his coach will be the allies who make all the difference.
- Make sure to put a password on your iPhone or else you will find 356 selfies on your phone and no storage space left. The good news is that they will make you laugh, and his Instagram account will be rad. (Also, if you’re over 25, you’re probably not cool enough to be his Instagram friend.)
- This kid will be a ham, but he’ll manage to find a best friend who can take it a notch higher. Together, they will be a riot.
- Be careful about teaching this kid to be independent because your 13-year-old might announce at church one Sunday that he needs help moving to the beach. He will also probably be your cleanest child because he’ll always keep his stuff packed in boxes in the closet in case he gets that chance.
- The hardest part about your son having Down syndrome will not be your boy at all. The hardest part will be getting the services and supports he needs. You will have to fight, fight, fight for what should be commonplace like healthcare and an inclusive education, but you will be so grateful you did it in those moments when Andy is embraced by his genuine friends or when he speaks (and manages to be sarcastic) or when he goes to the Homecoming with a gaggle of teenagers. You will want people to think it’s effortless, but sometimes you will need to let them know about the work involved so that they can fight alongside you to continue seeing these sweet rewards.
- Be careful about teaching this boy to write and use technology because he may write an email to his teacher to try and get out of school.
- Even though Andy will tease his sisters mercilessly and get downright furious when they go in his room, he will also be innately sensitive and tender when it really matters. When Lily cries as a baby, he will scoot with her down the stairs and never drop her. When Kate feels sad after a rough day, he will wrap his arms around her and tell her she’s nice. And when Lily hits the ground hard during a basketball game, he will dive on the court to scoop her up when nobody else can think fast enough to move. And he’ll inherently know that people are more important than rules … this will be one of his best traits.
- When you find out your son has Down syndrome, you will worry that you won’t be able to have any more adventures, but your family will go to zoos and museums with friends; drive across the US many times; go to Disney, DC, New York, and Boston; go waterfall jumping and zip lining and white water rafting in the summer; go on some terrifying midnight hikes on suspension bridges and tubing trips in thunderstorms; and so much more. Life will be fun. And your family will have friends all over the world–and some of your very best friends will come into your life because of that Down syndrome/disability connection.
- Kids will be able to motivate Andy more than nerdy parents. You will work with Andy for a couple of years to help him learn to ride a tricycle, but he won’t actually start pedaling until he is out front one day with the neighbor girl. Then, you’ll plead with him to try without training wheels, but he won’t do it until you agree to buy French fries and ice cream for the neighbor boys. And you’ll only ever be able to get him to ride 8 miles toward his cycling merit badge on your own. But you’ll learn a thing or two about him by the time he’s 17. You’ll know that he can bike those 21 miles in 4 hours with the proper motivation from his cousins, sisters, and these wonderful kids from church, school, and the mountain biking team. And he will do it because friendships (and inclusion) will be the key to unlocking his potential.
(And be prepared that at the end of the day amidst all the joy and pride, there will be a twinge of sadness because you will be the last thing on his mind as he goes off to cookouts and parties with his friends. But this is as it should be … because he’s a typical teenage boy.)