what is it like to have a down syndrome child
Information technology'southward common for parents of babies with Down syndrome to experience shock, sadness and fearfulness over the unknowns of raising a child who has intellectual and developmental disabilities. Serious health problems tin can add together to the panic; most half of all children built-in with Down syndrome have heart defects. Just veteran parents have a reassuring bulletin for new moms and dads out at that place:
It gets better. And then, so much better.
Here are 21 things they say they wish they had known from mean solar day one virtually what it's like to accept a kid with Down syndrome.
1. Well-significant medical professionals might non say the right things.
"I wish I had realized that the doctor who delivered your diagnosis did non empathize the beauty of raising a child with Down syndrome. I wish I wouldn't have allow the harshness of his words impact me in such a profound way. ... Where he saw different, I see wonderment. Where he saw delays, I encounter triumphs. Where he saw hurting, I see love." —Shannon Striner
2. Down's syndrome does not mean a poor quality of life.
"Down's syndrome is not a death sentence. When my daughter was born, I wish I had known that things would be OK — that we would express joy a lot, and that she would bring me and then much joy every solar day." —Keli Gooch
three. A complete change of footstep in life can exist refreshing and fulfilling.
"Before our daughter with Down's syndrome arrived, our life was chaotic and fast. She has forced the states to slow down and capeesh the beauty that comes from the road less traveled." —Shannon Striner
4. Your babe is still your infant.
"Your babe is not defined by Down's syndrome. Yes, your child has Down's syndrome, but he or she will all the same exist a unique fiddling person with likes and dislikes, strengths and weaknesses. Your child volition cadet trends and stereotypes, surprise you and delight you, also make you mad and disappointed — just the same as your other children. Merely you will honey them, adore them and they will fill your life with joy — but like your other children." —Sinead Quinn
5. A child with Down syndrome is a blessing for his or her siblings, non a curse.
"I wish I had known that having a kid with Down syndrome would make her older sister fifty-fifty more than kind and empathetic. Sharing the spotlight has made her happy, non resentful." —Shannon Striner
6. Just make sure you pay plenty of attending to your child's siblings.
"Sometimes without realizing it, we can be fussing so much on our child with Down's syndrome that we forget to bank check in on our other kids and their needs. Simply because they haven't got an actress chromosome doesn't mean they don't have extra feelings or get bullied, feel stressed and, at times, feel neglected." —Sinead Quinn
vii. Perceptions of Down's syndrome accept changed in overwhelmingly positive ways.
"Within hours afterward 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. Just it'southward a different globe now. Jackson spends a skilful percentage of his day integrated with peers, and he'due south fifty-fifty a mini-celebrity. I've walked backside him in the halls and he is flooded with high-five requests and hugs."—Brian Horn
8. Your kid is likely to understand equally much equally a typical child.
"Even though he is very not-exact and can't express all of his thoughts, my son understands and so much." —Brian Horn
9. A lack of verbal skills can be heartbreaking at times.
"Because my son does sympathize so much, only can't verbally communicate it, he tin 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 go more physical or yell. I know when he gets in that state that something is incorrect, and I try to figure it out. It'south a very long process, and it breaks my middle every single time." —Brian Horn
10. The teenage years are totally a thing for kids with Down syndrome.
"'Kids with Down's syndrome are so sweet and lovable.' ... 'Children with Downwardly 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 middle' and is going through all the emotions of her typical teenage peers." —Keli Gooch
eleven. Stressful stages with your kid are just that — stages.
"That includes the potty-training stage and the running-away phase. My son was a 'runner,' as many children with Down's syndrome are around ages 5 to seven. The Terrible Twos usually start around age 5 and last until age 7 or 8. They do grow out of it. Information technology will pass!" —Susan Holcombe
12. Your child volition not be a kid forever.
"When our son was an older kid and teenager, people still spoke to him in a phonation used for small children. Equally an adult, our son is not a 'man child.' He has grown into an developed, with adult responsibilities and goals. I've noticed people now address him as an adult, with respect. ... Do not address a kid every bit the age y'all remember 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 lot'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 virtually having a kid with Downward syndrome that ushers y'all into a new world. At present I accept a new language to match." —Jillian Benfield
14. You lot'll become a master trouble-solver.
"Developing practical solutions to problems or roadblocks becomes the norm. If you think the people sitting effectually a tabular array at a Fortune 500 company are smart — well, and so, you've probably never seen an IEP (Individualized Instruction Program) team think of creative, targeted accommodations for a child!" —Keli Gooch
15. You'll get a powerful advocate because and then many battles still need to exist fought.
"I thought that every child in this state 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 Downward 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 piece of work. The term 'competitive employment' is huge because besides many adults with Downwardly syndrome piece of work at jobs in sheltered workshops for little wages." —Susan Holcombe
16. You lot'll gain shut friendships with other parents for life.
"I didn't know I would be inbound an entirely new community, 1 whose members are enriched thanks to the actress chromosome that binds united states of america. If you need customs, check out the Down syndrome Diagnosis Network." —Jillian Benfield
"I actually feel like we are blessed in many means, considering the earth of disability has opened u.s. up to coming together people who are accepting of differences, who have bigger hearts, who are open-minded and run across possibilities where others see limitations." —Sinead Quinn
17. Your happy ending might be vastly unlike from what yous imagined — but it volition however be happy.
"Sometimes the storms in our lives brand 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 skilful life is i of love and purpose. My kid with Down's syndrome has gifted me both." —Jillian Benfield
18. Beware of setting unnecessary limitations.
"Just because your child has Downwardly syndrome doesn't hateful you tin't still live a full life also. Is it a fleck more complicated? Yes. But is it less awesome? No. You can still travel with your child. Y'all can even so move to that bigger or smaller city, or fifty-fifty motion to another land. Nosotros did!" —Sinead Quinn
19. Starting time a college fund for your child with Down syndrome.
"Never did I imagine my son would be able to attend higher, much less the best university in our state! I wish someone had told united states to kickoff a college fund for him so that we could have saved for this monumental opportunity." —Susan Holcombe
20. Take care of yourself then you tin take intendance of the ones you love.
"We demand to remember that when we are looking afterward our ain health and well-being — like slumber, nutrition and exercise — nosotros are increasing our mental and physical ability to intendance for our families." —Sinead Quinn
21. Down the road, your grown child with Down syndrome may tell you lot something like this:
"I take a bully life. I am happy. I practice things on my ain. I have a girlfriend I love. I dear my job. I have cracking friends." —Rion Holcombe, 25, a graduate of Clemson University'due south two-twelvemonth LIFE plan
Rion's mom, Susan Holcombe, added:
"Rion always smiles and randomly says, 'I have a GREAT life!' That solitary is what he would desire people to know."
This story was first published on TODAY on March 18, 2019.
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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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