It’s common for parents of babies with Down syndrome to experience shock, sadness and fear over the unknowns of raising a child who has intellectual and developmental disabilities. Serious health problems can add to the panic; about half of all children born with Down syndrome have heart defects. But veteran parents have a reassuring message for new moms and dads out there:
It gets better. So, so much better.
Here are 21 things they say they wish they had known from day one about what it’s like to have a child with Down syndrome.
1. Well-meaning medical professionals might not say the right things.
“I wish I had realized that the doctor who delivered your diagnosis did not understand the beauty of raising a child with Down syndrome. I wish I wouldn't have let the harshness of his words affect me in such a profound way. ... Where he saw different, I see wonderment. Where he saw delays, I see triumphs. Where he saw pain, I see love.” —Shannon Striner
2. Down syndrome does not mean a poor quality of life.
“Down syndrome is not a death sentence. When my daughter was born, I wish I had known that things would be OK — that we would laugh a lot, and that she would bring me so much joy every day.” —Keli Gooch
3. A complete change of pace in life can be refreshing and fulfilling.
“Before our daughter with Down syndrome arrived, our life was chaotic and fast. She has forced us to slow down and appreciate the beauty that comes from the road less traveled.” —Shannon Striner
4. Your baby is still your baby.
“Your baby is not defined by Down syndrome. Yes, your child has Down syndrome, but he or she will still be a unique little person with likes and dislikes, strengths and weaknesses. Your child will buck trends and stereotypes, surprise you and delight you, also make you mad and disappointed — just the same as your other children. But you will love them, adore them and they will fill your life with joy — just like your other children.” —Sinead Quinn
5. A child with Down syndrome is a blessing for his or her siblings, not a curse.
“I wish I had known that having a child with Down syndrome would make her older sister even more kind and empathetic. Sharing the spotlight has made her happy, not resentful.” —Shannon Striner
6. But make sure you pay plenty of attention to your child's siblings.
“Sometimes without realizing it, we can be fussing so much on our child with Down syndrome that we forget to check in on our other kids and their needs. Just because they haven’t got an extra chromosome doesn’t mean they don’t have extra feelings or get bullied, feel stressed and, at times, feel neglected.” —Sinead Quinn
7. Perceptions of Down syndrome have changed in overwhelmingly positive ways.
“Within hours after learning my son Jackson had Down syndrome, I thought of the future and was terrified Jackson would be ostracized or bullied in school. I remembered when I was in school that we barely saw kids with Down syndrome, and we really didn't understand or know much about them. But it's a different world now. Jackson spends a good percentage of his day integrated with peers, and he's even a mini-celebrity. I've walked behind him in the halls and he is flooded with high-five requests and hugs.”—Brian Horn
8. Your child is likely to understand as much as a typical kid.
“Even though he is very non-verbal and can't express all of his thoughts, my son understands so much.” —Brian Horn
9. A lack of verbal skills can be heartbreaking at times.
“Because my son does understand so much, but can't verbally communicate it, he can get angry and frustrated. If he has a bad day at school, he can't sit down and talk to me about it. So, he tends to get more physical or yell. I know when he gets in that state that something is wrong, and I try to figure it out. It's a very long process, and it breaks my heart every single time.” —Brian Horn
10. The teenage years are totally a thing for kids with Down syndrome.
“‘Kids with Down syndrome are so sweet and lovable.’ ... ‘Children with Down syndrome love to cuddle and give hugs.’ Well, yeah — that’s not entirely true. Even though my daughter is considered non-verbal and has few words, her face says so much more. Over the years she has become master of the ‘stink eye’ and is going through all the emotions of her typical teenage peers.” —Keli Gooch
11. Stressful stages with your child are just that — stages.
“That includes the potty-training stage and the running-away stage. My son was a ‘runner,’ as many children with Down syndrome are around ages 5 to 7. The Terrible Twos usually start around age 5 and last until age 7 or 8. They do grow out of it. It will pass!” —Susan Holcombe
12. Your child will not be a child forever.
“When our son was an older child and teenager, people still spoke to him in a voice used for small children. As an adult, our son is not a ‘man child.’ He has grown into an adult, with adult responsibilities and goals. I’ve noticed people now address him as an adult, with respect. ... Do not address a child as the age you think they are; instead, treat them the age you want them to act. Setting higher expectations results in success.” —Susan Holcombe
13. As a parent, you'll learn a new language.
“I didn’t know I would speak a language of acronyms — IFSP, IEP, PT, ST, OT, OHS, VSD, the list goes on. There’s much about having a child with Down syndrome that ushers you into a new world. Now I have a new language to match.” —Jillian Benfield
14. You'll become a master problem-solver.
“Developing practical solutions to problems or roadblocks becomes the norm. If you think the people sitting around a table at a Fortune 500 company are smart — well, then, you’ve probably never seen an IEP (Individualized Education Program) team think of creative, targeted accommodations for a child!” —Keli Gooch
15. You’ll become a powerful advocate because so many battles still need to be fought.
“I thought that every child in this country was provided with the therapies and assistance they needed to thrive. I didn't realize that families had to fight for services, education and assistance. I didn't realize that adults with Down syndrome were lobbying for their rights. My daughter has opened my eyes to the work that needs to be done to help others.” —Shannon Striner
“A goal for our children today is competitive employment — equal pay for work. The term ‘competitive employment’ is huge because too many adults with Down syndrome work at jobs in sheltered workshops for little wages.” —Susan Holcombe
16. You'll gain close friendships with other parents for life.
“I didn’t know I would be entering an entirely new community, one whose members are enriched thanks to the extra chromosome that binds us. If you need community, check out the Down Syndrome Diagnosis Network.” —Jillian Benfield
“I actually feel like we are blessed in many ways, because the world of disability has opened us up to meeting people who are accepting of differences, who have bigger hearts, who are open-minded and see possibilities where others see limitations.” —Sinead Quinn
17. Your happy ending might be vastly different from what you imagined — but it will still be happy.
“Sometimes the storms in our lives make us better people, and they give us an appreciation for all the things that other people take for granted. That kind of perspective is a rare gift.” —Shannon Striner
“A good life is one of love and purpose. My child with Down syndrome has gifted me both.” —Jillian Benfield
18. Beware of setting unnecessary limitations.
“Just because your child has Down syndrome doesn’t mean you can’t still live a full life too. Is it a bit more complicated? Yes. But is it less awesome? No. You can still travel with your child. You can still move to that bigger or smaller city, or even move to another country. We did!” —Sinead Quinn
19. Start a college fund for your child with Down syndrome.
“Never did I imagine my son would be able to attend college, much less the best university in our state! I wish someone had told us to start a college fund for him so that we could have saved for this monumental opportunity.” —Susan Holcombe
20. Take care of yourself so you can take care of the ones you love.
“We need to remember that when we are looking after our own health and well-being — like sleep, nutrition and exercise — we are increasing our mental and physical ability to care for our families.” —Sinead Quinn
21. Down the road, your grown child with Down syndrome may tell you something like this:
“I have a great life. I am happy. I do things on my own. I have a girlfriend I love. I love my job. I have great friends.” —Rion Holcombe, 25, a graduate of Clemson University’s two-year LIFE program
Rion’s mom, Susan Holcombe, added:
“Rion always smiles and randomly says, ‘I have a GREAT life!’ That alone is what he would want people to know.”
This story was first published on TODAY on March 18, 2019.