I Am Scared My Baby Has Down Syndrome
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 wellness problems can add to the panic; about half of all children built-in with Down syndrome have heart defects. But veteran parents have a reassuring message for new moms and dads out there:
Information technology gets better. Then, so much better.
Here are 21 things they say they wish they had known from 24-hour interval one about what information technology's like to have a kid 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 non understand the dazzler 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 profound manner. ... Where he saw different, I see wonderment. Where he saw delays, I come across triumphs. Where he saw hurting, I encounter love." —Shannon Striner
two. Downwards syndrome does not mean a poor quality of life.
"Down syndrome is non a death penalty. When my daughter was built-in, I wish I had known that things would be OK — that we would laugh a lot, and that she would bring me then much joy every mean solar day." —Keli Gooch
iii. A complete change of pace in life can exist refreshing and fulfilling.
"Earlier our daughter with Downward syndrome arrived, our life was chaotic and fast. She has forced us to slow downwardly and capeesh the beauty that comes from the road less traveled." —Shannon Striner
iv. Your baby is still your baby.
"Your babe is non defined by Down syndrome. Yep, your child has Down syndrome, merely he or she volition still be a unique trivial person with likes and dislikes, strengths and weaknesses. Your child will cadet trends and stereotypes, surprise you and please you, as well make you mad and disappointed — only the same equally your other children. Just you will love them, adore them and they will fill up your life with joy — just similar your other children." —Sinead Quinn
5. A child with Down syndrome is a approving 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 brand sure y'all pay plenty of attention to your child'due south siblings.
"Sometimes without realizing it, we can be fussing then much on our child with Down syndrome that nosotros forget to bank check in on our other kids and their needs. Simply because they oasis't got an extra chromosome doesn't mean they don't take extra feelings or get bullied, experience stressed and, at times, feel neglected." —Sinead Quinn
7. Perceptions of Down syndrome have changed in overwhelmingly positive ways.
"Within hours later on 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'south a different world now. Jackson spends a good percentage of his day integrated with peers, and he'southward fifty-fifty a mini-celebrity. I've walked behind him in the halls and he is flooded with loftier-five requests and hugs."—Brian Horn
8. Your child is likely to sympathise as much as a typical kid.
"Even though he is very not-verbal and can't limited all of his thoughts, my son understands and then much." —Brian Horn
nine. A lack of exact skills tin can be heartbreaking at times.
"Because my son does sympathize so much, but can't verbally communicate it, he tin can become angry and frustrated. If he has a bad day at school, he tin't sit downwards and talk to me about it. So, he tends to become more than physical or yell. I know when he gets in that country that something is incorrect, and I try to figure it out. It's a very long procedure, and it breaks my center every single time." —Brian Horn
x. The teenage years are totally a matter for kids with Downwards syndrome.
"'Kids with Downwards syndrome are so sweet and lovable.' ... 'Children with Down's syndrome honey to caress and requite hugs.' Well, yeah — that's not entirely true. Even though my girl is considered non-verbal and has few words, her confront says so much more than. Over the years she has become master of the 'stink centre' and is going through all the emotions of her typical teenage peers." —Keli Gooch
11. Stressful stages with your kid are simply that — stages.
"That includes the potty-training stage and the running-away stage. My son was a 'runner,' equally many children with Down's syndrome are around ages 5 to seven. The Terrible Twos normally start around age 5 and final until age seven or eight. They do grow out of it. It volition pass!" —Susan Holcombe
12. Your child will not exist a kid forever.
"When our son was an older child and teenager, people still spoke to him in a voice used for small children. Every bit an adult, our son is not a 'homo kid.' He has grown into an developed, with developed responsibilities and goals. I've noticed people now address him every bit an adult, with respect. ... Do non accost a child as the historic period you think they are; instead, treat them the age you want them to human action. Setting college expectations results in success." —Susan Holcombe
13. Every bit 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'south much about having a child with Down syndrome that ushers you into a new world. At present I have a new linguistic communication to match." —Jillian Benfield
14. You'll become a master trouble-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 Plan) team call back of creative, targeted accommodations for a child!" —Keli Gooch
fifteen. Y'all'll get a powerful advocate because and so many battles nevertheless 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 help. 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 piece of work at jobs in sheltered workshops for piffling wages." —Susan Holcombe
xvi. Y'all'll gain close friendships with other parents for life.
"I didn't know I would be inbound an entirely new community, one whose members are enriched thanks to the extra chromosome that binds us. If you need customs, cheque out the Down Syndrome Diagnosis Network." —Jillian Benfield
"I actually feel like nosotros are blessed in many ways, because the globe of disability has opened united states up to meeting people who are accepting of differences, who accept bigger hearts, who are open-minded and encounter possibilities where others see limitations." —Sinead Quinn
17. Your happy ending might exist vastly different from what you imagined — only it will still be happy.
"Sometimes the storms in our lives brand u.s.a. amend people, and they requite 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's syndrome has gifted me both." —Jillian Benfield
18. Beware of setting unnecessary limitations.
"Just because your kid has Down syndrome doesn't mean you lot can't still live a full life also. Is it a bit more complicated? Yes. But is it less awesome? No. You tin still travel with your kid. You can still movement to that bigger or smaller urban center, or even move to another country. We did!" —Sinead Quinn
19. Start a college fund for your child with Downwardly 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 the states to start a college fund for him so that we could accept saved for this monumental opportunity." —Susan Holcombe
20. Have care of yourself so you can take care of the ones y'all love.
"We demand to call up that when nosotros are looking after our own health and well-beingness — like sleep, nutrition and do — we are increasing our mental and physical ability to care for our families." —Sinead Quinn
21. Down the route, your grown child with Down syndrome may tell you something like this:
"I have a great life. I am happy. I exercise things on my own. I take a girlfriend I love. I beloved my chore. I have great friends." —Rion Holcombe, 25, a graduate of Clemson University'due south two-year LIFE plan
Rion's mom, Susan Holcombe, added:
"Rion always smiles and randomly says, 'I have a GREAT life!' That lone is what he would want people to know."
This story was first published on TODAY on March xviii, 2019.
Related video:
I Am Scared My Baby Has Down Syndrome
Source: https://www.today.com/series/things-i-wish-i-knew/down-syndrome-stories-21-things-parents-wish-they-knew-t150473
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