Veteran parents explain what it's actually like to raise a kid with three copies of chromosome 21.

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It’s common for parental of babies v Down syndrome to suffer shock, sadness and also fear over the unknowns of raising a boy who has actually intellectual and also developmental disabilities. Serious health troubles can add to the panic; about half of all children born with Down syndrome have heart defects. However veteran parents have actually a reassuring post for new moms and also dads the end there:

It it s okay better. So, so lot better.

Here space 21 points they to speak they great they had actually known from day one around what it’s choose to have actually a kid with under syndrome.

1. Well-meaning medical professionals can not speak the ideal things.

“I wish I had actually realized the the physician who yielded your diagnosis did not know the beauty beauty of raising a boy with down syndrome. I wish ns wouldn"t have actually let the harshness the his words impact me in such a profound way. ... Where he experienced different, I check out wonderment. Whereby he saw delays, I view triumphs. Where he saw pain, I check out love.” —Shannon Striner

2. Under syndrome go not mean a poor quality that life.

“Down syndrome is no a death sentence. As soon as my daughter to be born, ns wish I had known that points would be OK — that we would laugh a lot, and also that she would bring me therefore much pleasure every day.” —Keli Gooch

Keli Gooch is pictured through her family. Her earliest daughter, Tayler, has Down syndrome.Monica Lopez-Hagen Photography

3. A complete readjust of pace in life can be refreshing and also fulfilling.

“Before our daughter through Down syndrome arrived, our life to be chaotic and also fast. She has required us to slow down and appreciate the beauty beauty that originates from the road much less traveled.” —Shannon Striner

4. Your baby is still your baby.

“Your baby is not characterized by down syndrome. Yes, her child has actually Down syndrome, yet he or she will certainly still it is in a unique tiny person with likes and also dislikes, strengths and weaknesses. Your boy will buck trends and stereotypes, surprise you and also delight you, likewise make you mad and disappointed — simply the same as your various other children. Yet you will love them, adore them and they will fill her life with happiness — similar to your various other children.” —Sinead Quinn

Shannon Striner's earliest daughter, Haley, happily holds she younger sister, Sienna. Sienna has actually Down syndrome.Courtesy the Shannon Striner

5. A son with down syndrome is a blessing because that his or she siblings, not a curse.

“I wish I had known that having a child with down syndrome would certainly make she older sisters even much more kind and empathetic. Sharing the spotlight has actually made her happy, not resentful.” —Shannon Striner

6. But make certain you salary plenty of attention to your child"s siblings.

“Sometimes there is no realizing it, we can be fussing so much on our kid with down syndrome that us forget to check in top top our other kids and also their needs. Just due to the fact that they haven’t acquired an extra chromosome doesn’t median they don’t have extra feel or acquire bullied, feel stressed and, at times, feel neglected.” —Sinead Quinn

Sinead Quinn is pictured with her three kids. Her boy Torryn has Down syndrome.Georgia Glennon Photography

7. Awareness of down syndrome have readjusted in overwhelmingly positive ways.

“Within hours after finding out my child Jackson had Down syndrome, I believed of the future and also was terrified Jackson would certainly be ostracized or bullied in school. I remembered when I was in institution that we barely saw children with down syndrome, and we yes, really didn"t understand or understand much around them. However it"s a different civilization now. Jackson security a great percentage that his day integrated with peers, and also he"s even a mini-celebrity. I"ve to walk behind that in the halls and also he is flooded with high-five requests and also hugs.”—Brian Horn

8. Your child is most likely to know as much as a typical kid.

“Even though he is very non-verbal and also can"t express every one of his thoughts, my kid understands so much.” —Brian Horn

Brian Horn is pictured with his son, Jackson, who has Down syndrome.Courtesy that Brian Horn

9. A absence of verbal an abilities can it is in heartbreaking at times.

“Because my boy does recognize so much, yet can"t verbally communicate it, that can gain angry and frustrated. If he has a bad day in ~ school, he can"t sit down and talk come me around it. So, he tends to get more physical or yell. I know when he gets in the state that something is wrong, and I shot to figure it out. It"s a really long process, and it division my heart every solitary time.” —Brian Horn


10. The teenage year are entirely a thing for kids with under syndrome.

‘Kids with Down syndrome room so sweet and lovable.’ ... ‘Children v Down syndrome love to cuddle and give hugs.’ Well, yes — that’s not entirely true. Even though mine daughter is considered non-verbal and also has few words, her confront says so lot more. End the years she has become master of the ‘stink eye’ and is going v all the emotions of her typical teenage peers.” —Keli Gooch

11. Stressful stages through your boy are just that — stages.

“That consists of the potty-training stage and the running-away stage. My kid was a ‘runner,’ together many kids with down syndrome are about ages 5 come 7. The disastrous Twos generally start roughly age 5 and also last until age 7 or 8. Castle do flourish out of it. It will pass!” —Susan Holcombe

Rion Holcombe, 25, has grown right into a confident, happy adult.Courtesy the Susan Holcombe

12. Your child will not be a child forever.

“When our kid was an older child and also teenager, world still spoke to the in a voice supplied for little children. Together an adult, our child is no a ‘man child.’ He has grown into an adult, v adult responsibilities and also goals. I have noticed human being now address him together an adult, v respect. ... Do not address a kid as the period you think lock are; instead, treat castle the age you want them come act. Setting greater expectations results in success.” —Susan Holcombe

13. As a parent, you"ll learn a brand-new language.

“I didn’t understand I would speak a language of abbreviation — IFSP, IEP, PT, ST, OT, OHS, VSD, the perform goes on. Yes much around having a son with under syndrome the ushers you into a brand-new world. Now I have a new language to match.” —Jillian Benfield

Jillian Benfield v her son, Anderson, who has actually Down syndrome.Courtesy of Jillian Benfield

14. You"ll become a master problem-solver.

“Developing handy solutions to troubles or roadblocks becomes the norm. If friend think the world sitting approximately a table at a luck 500 company are smart — well, then, you’ve most likely never seen an IEP (Individualized education and learning Program) team think of creative, target accommodations for a child!” —Keli Gooch

15. You’ll come to be a an effective advocate since so plenty of battles still should be fought.

“I assumed that every son in this nation was provided with the therapies and also assistance they essential to thrive. I didn"t realize that family members had to fight for services, education and assistance. Ns didn"t realize that adults v Down syndrome were lobbying for your rights. Mine daughter has opened my eye to the occupational that requirements to be done to aid others.” —Shannon Striner

“A goal because that our children is competitive employment — same pay for work. The ax ‘competitive employment’ is substantial because too many adults through Down syndrome occupational at work in sheltered workshops for little wages.” —Susan Holcombe

In an essay written to her daughter Sienna (pictured here), Shannon Striner wrote, "I would not readjust one thing about you."Courtesy of Shannon Striner

16. You"ll get close friendships with various other parents because that life.

“I didn’t recognize I would be start an entirely brand-new community, one whose members space enriched thanks to the extra chromosome that binds us. If you need community, examine out the down Syndrome Diagnosis Network.” —Jillian Benfield

“I actually feel like we room blessed in countless ways, since the human being of handicap has opened up us up to meeting people who are accepting of differences, who have actually bigger hearts, who room open-minded and also see possibilities whereby others watch limitations.” —Sinead Quinn



17. Her happy ending could be vastly different from what you imagined — yet it will still it is in happy.

“Sometimes the storms in our resides make us much better people, and they offer us an evaluation for every the things that other civilization take for granted. That kind of perspective is a rare gift.” —Shannon Striner

“A great life is one of love and purpose. My child with down syndrome has gifted me both.” —Jillian Benfield

"A various life is not a 'less than' life," said mother Jillian Benfield, pictured below with she son, Anderson. "Difference makes the world a richer ar to live."Courtesy of Jillian Benfield

18. Beware of setting unnecessary limitations.

“Just since your child has actually Down syndrome doesn’t mean you can’t still live a complete life too. Is that a bit much more complicated? Yes. Yet is it less awesome? No. You can still travel v your child. You have the right to still relocate to that bigger or smaller city, or also move to an additional country. We did!” —Sinead Quinn

19. Start a college fund for your son with down syndrome.

“Never did ns imagine my kid would be able to attend college, much less the best university in our state! ns wish someone had actually told united state to start a college money for the so the we can have conserved for this huge opportunity.” —Susan Holcombe

20. Take treatment of you yourself so you can take treatment of the ones you love.

“We must remember that once we room looking after our very own health and well-being — choose sleep, nutrition and exercise — us are increasing our mental and physical ability to treatment for our families.” —Sinead Quinn

Rion Holcombe, a 25-year-old with Down syndrome, is loving his life.Molly Claire Photography / Courtesy the Susan Holcombe

21. Down the road, your grown son with down syndrome might tell you something choose this:

“I have a an excellent life. Ns am happy. I execute things on my own. I have a girlfriend ns love. Ns love mine job. Ns 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 good life!’ the alone is what he would certainly want human being to know.”

This story was an initial published on on march 18, 2019.

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Laura T. Coffey is a an elderly writer, editor and also producer because that and is the author of the best-selling non-fiction book "My Old Dog: Rescued Pets with Remarkable 2nd Acts." affix with Laura in ~