21 things parents want to know
March 21 is World Down Syndrome Day, a time to celebrate the lives of people with Down syndrome and reflect on the freedoms and opportunities available to them. The artfully designated date – 3/21 – denotes something unique to people with Down syndrome: three copies of chromosome 21 (instead of the usual two).
It is common for parents of babies with Down syndrome to experience shock, sadness and fear over the unknowns associated with raising a child with 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 seasoned parents have a reassuring message for new moms and dads:
It gets better. Well fine.
Here are 21 things they say they wish they’d known from day one about what it’s like to have a child with Down syndrome.
1. Well-meaning healthcare professionals might not say the right things.
“I would have liked to realize that the doctor who made your diagnosis did not understand the beauty of raising a child with Down’s syndrome. I wish I wouldn’t have let the harshness of his words affect me in such a deep way. … Where he saw different, I see the wonder. Where he has seen 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 everything would be fine, that we laughed a lot and that she would bring me so much joy every day. —Keli Gooch
3. A complete change in the pace of life can be refreshing and fulfilling.
“Before our daughter with Down’s syndrome arrived, our life was chaotic and fast-paced. She made us 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 be a unique little person with likes and dislikes, strengths and weaknesses. Your child will reverse trends and stereotypes, surprise and delight you, also drive you crazy and disappointed just like 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’s syndrome is a blessing for his siblings, not a curse.
“I wish I had known that having a child with Down’s syndrome would make her older sister even more kind and empathetic. Sharing the spotlight made her happy, not resentful. ” —Shannon Striner
6. But make sure you pay lots of attention to your child’s siblings.
“Sometimes, without realizing it, we can care so much about our child with Down syndrome that we forget to check on our other children and their needs. Just because they don’t have an extra chromosome doesn’t mean that they don’t have extra feelings or that they are intimidated, that they feel stressed and, at times, that they feel neglected. —Sinead Quinn
7. Perceptions of Down syndrome have changed in an overwhelmingly positive way.
“Within hours of learning that my son Jackson had Down syndrome, I thought about the future and was worried that Jackson would be ostracized or bullied at school. I remembered when I was in school that we barely saw children with Down’s syndrome and didn’t understand or know much about them. But it’s another world now. Jackson spends a good chunk of his day fitting in with his peers, and he’s even a mini-celebrity. I walked behind him in the hallways and he is inundated with five requests and hugs.– Brian Corne
8. Your child will probably understand as much as a typical child.
“Even though he is very non-verbal and cannot express all of his thoughts, my son understands so much.” – Brian Corne
9. A lack of verbal skills can sometimes be heartbreaking.
“Because my son understands so much, but can’t communicate it verbally, he can get angry and frustrated. If he’s having a bad day at school, he can’t sit down and tell me about it. Thus, he tends to become more physical or to scream. I know when he finds himself in this state that something is wrong, and I try to figure it out. It’s a very long process, and it breaks my heart every time. – Brian Corne
10. Adolescence is totally something for children with Down’s syndrome.
““Children with Down’s syndrome are so sweet and adorable.‘ … ‘Children with Down’s syndrome love hugs and cuddles.’ Well, yeah, that’s not quite true. Even though my daughter is considered non-verbal and has few words, her face says a lot more. Over the years, she has become a master of the “stinky eye” and goes through all the emotions of her typical teenage peers. ” —Keli Gooch
11. Stressful stages with your child are just that: stages.
“This includes the potty training stage and the runaway stage. My son was a “runner” because many children with Down’s syndrome are between 5 and 7 years old. The two terrible ones usually start around 5 years old and last up to 7 or 8 years. It will pass!” —Susan Holcombe
12. Your child will not be a child forever.
“When our son was an older child and a teenager, people still spoke to him in a voice used for small children. As an adult, our son is not a “male child”. He became an adult, with adult responsibilities and goals. I have noticed that people are now addressing him as an adult, with respect. … Do not address a child as at the age you think they are; instead, treat them the age at which you want to them to act. Setting higher expectations results in success. —Susan Holcombe
13. As a parent you will 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. Having a child with Down’s syndrome has many aspects that bring you into a new world. Now I have a new language to match. –Jillian benfield
14. You will become an expert at problem solving.
“Developing practical solutions to problems or obstacles becomes the norm. If you think the people sitting around a table in a Fortune 500 company are smart, well, you’ve probably never seen an IEP (Individual Education Program) team think of creative, focused accommodations for a child. ! ” —Keli Gooch
15. You will become a powerful defender because so many battles have yet to be fought.
“I thought every child in this country was getting the therapy and help they needed to thrive. I didn’t realize families had to fight for services, education and help. I had no idea that adults with Down’s syndrome were lobbying for their rights. My daughter opened my eyes to the work that needs to be done to help others. —Shannon Striner
“One goal for our children today is competitive employment – equal pay for work. The term “competitive employment” is huge because too many adults with Down’s syndrome work in sheltered workshops for low wages. ” —Susan Holcombe
16. You will form close friendships with other parents for life.
“I didn’t know I was going to be entering a whole new community, whose members are enriched by the extra chromosome that binds us together. If you need a community, check out the Down Syndrome Diagnostic Network. —Jillian Benfield
“In fact, I feel like we are blessed in so many ways, because the world of disability has opened up for us to meet people who accept differences, who have a bigger heart, who have an open mind. and see possibilities where others see limits. “ —Sinead Quinn
17. Your happy ending may be very different from what you imagined, but it will always be happy.
“Sometimes the storms in our lives make us better people and they give us an appreciation for everything others take for granted. This kind of perspective is a rare gift. —Shannon Striner
“A good life is a life of love and purpose. My child with Down’s syndrome gave me both. —Jillian Benfield
18. Beware of unnecessary limitations.
“Just because your child has Down syndrome doesn’t mean you can’t live a full life yet. Is it a bit more complicated? Yes. But is it less brilliant? No. You can still travel with your child. You can always move to that bigger or smaller city, or even move to another country. We were doing!” —Sinead Quinn
19. Start a college fund for your child with Down’s syndrome.
“I never imagined that my son could go to college, let alone the best university in our state!” I wish someone had told us to create a college fund for him so that we could save for this monumental opportunity. ” —Susan Holcombe
20. Take care of yourself so that you can take care of your loved ones.
“We need to remember that when we take care of our own health and well-being – such as sleep, nutrition and exercise – we increase our mental and physical capacity to care for our families.” —Sinead Quinn
21. Later, your adult child with Down syndrome might tell you something like this:
“I have a good life. I am happy. I do things myself. I have a girlfriend that I love. I love my work. I have great friends. —Rion Holcombe, 25, graduate of Clemson University’s two-year LIFE program
Rion’s mother, Susan holcombe, added:
“Rion always smiles and says randomly, ‘I have a good life! That’s just what he wants people to know.
This story first appeared on TODAY on March 18, 2019.