Parenting Kids With Down Syndrome: If I Knew Then What I Know Now

My youngest daughter has Down syndrome. At first, her diagnosis seemed to be something I was not prepared for. Looking back at the scared mom I was nine years ago, there is so much I wish I had known.

If I could go back in time, I would tell myself dealing with the diagnosis would be one of the hardest parts of the journey; the rest would become everyday life — I believe we all find our “normal.” I also wish I would have known reaching milestones would be an accomplishment of extravagant joy and celebration. And although there are challenges and this road is not always easy, it is good. I wish I had known it would be better than OK.

So we reached out to our Down syndrome community and asked the parents, “What is something you wish you knew ‘then’ that you know now?”

These were their responses:

“Don’t worry about ‘when,’ live in the ‘now.'” — Ashley O.

“I wish I knew this diagnosis wasn’t a ‘punishment’ from God, or whatever higher power there may be, for the bad things I had done in my life. This diagnosis, this gift, was actually a blessing. Wouldn’t have him another way.” — Claire M.

“I wish I knew then I always had it in me to father this child to his full potential. Also, I wish I realized he’s just a kid, not unlike any other. I wish I hadn’t gone into ‘fix it’ and fact gathering mode before emotionally abandoning my wife, who was a puddle of emotion and didn’t care about fact at the time. I wish I knew how much I would change as a person and how much the people around me would evolve in terms of awareness and support. I wish I knew everyone would have our backs and my son’s back without question and there was no reason to fear him being an outcast. I wish I knew how much gratitude I would feel for his presence in our lives.” — Ron M.


“I wish I knew that when the doctor diagnosed my daughter, it was not going to be as doom and gloom as he described it. She is not just a little girl with Down syndrome, she is so much more. She has changed our family in all the best ways. I shouldn’t have mourned at the thought of Down syndrome. She is capable of anything. She is more than diagnosis.” — Cory V.

“I wish I would have known what pure joy my son is and the happiness he has brought into so many people’s lives just by being him. We are ‘the lucky few.’ He is an amazing child. The diagnosis is not that big of a deal. He’s like every other child. We are just taking the scenic route.” — April R.

“I wish I knew therapy was available through early intervention from the start so I could have guidance with my emotions. All those years were so difficult. When he was almost 3 it was brought to my attention and I got what I needed.” — Selissa J.

“I wish I would have known it would not be anything to be sad about. Our daughter can light up any room she walks in to, everyone she meets falls in love with her. Most importantly, she taught us what true unconditional love looks like and she has made me a better, more caring person. She is amazing and will do amazing things.” — Katie N.

“Thanks to my amazing daughter, I have been introduced to a community of people with such strength, resilience, acceptance and understanding that I previously did not know existed. My daughter has also made me a stronger person, with more tolerance, understanding and resilience I thought I was capable of.” — Mary M.

“I wish I knew that much joy and happiness was coming and all those fears about Down syndrome and what our future ‘could’ look like would wash away the moment I laid eyes on my son.” — Stephanie M.

“I wish I had known then the day would come when I couldn’t imagine my life without my son, that I would daydream of changing my career and selling it all, if only I could spend all day with him.” — Alvaro R.

I wish I would have known it was going to be all right. This little boy is going to make me and so many other people happy in his life.” — Jaci K.

“[I wish I would have known] that I could and would love this child. That happiness would be possible again.” — Carolina C.

“She is awesome, and I did not need to cry about the fact she has Down syndrome. I would also tell myself just because she is awesome, doesn’t mean she gets what she wants.” — Andrew S.

What about you, what is something you wish you knew ‘then’ that you know now? Let us know in the comments.

Thinkstock image by Eleonora_os and GaryRadler

Find this story helpful? Share it with someone you care about.

Related to Down Syndrome

21 Secrets of Parents of Kids With Down Syndrome

When my daughter was born with Down syndrome, I didn’t know what to expect. All I knew were stereotypes and outdated information. When I stopped by the local library to check out books on Down syndrome, every book was old, making me want to curl in a corner and cry. If I believed what those [...]

My Daughter With Down Syndrome Isn't 'Special'

As parents of four wonderful children, one of whom has Down syndrome, we are often at doctor’s visits. Typically, folks in the waiting room like to chit-chat. But when we have Noelle bouncing on our knee the conversation sometimes goes to: “Does she have Down Syndrome?” Noelle is just 13 months old, so we’re not [...]

My Daughter With Down Syndrome Had Open-Heart Surgery

My stomach was in knots. I was worried and scared. I did’t want my baby to hurt. I didn’t want my baby to be afraid. I looked at my precious little Savannah as I changed her diaper, as I bathed her and as I kissed her tummy to make her laugh. I could not help but think [...]
Charley on the new bike with Trevor standing by his side.

When My Son's Friend, Who Also Has Down Syndrome, Gave Him a Bike

For the longest time, Charley has been bugging us to get him a bike. Like every five minutes. It started around Christmastime. “Mom, I want bicycle,” he’d say. “It’s winter. No one rides in the winter,” I’d say. “Oh, I do.” I’d open the blinds, “In the snow?” “Yup.” “Not happening,” I’d say, and he’d stomp up [...]