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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