5 Things I’ve Learned in 10 Years Raising a Child with Down Syndrome

Yesterday was Nella’s tenth birthday. Many of you were brought to this blog because of the post I wrote ten years ago after she was born, before I knew any of the things I know now. Sometimes people hold back from writing or sharing about something because they think they have to know the things before they write them. I’m so glad I wrote before I knew things. I’m glad I typed and scribbled and hit “publish” when I was naive and hurting and didn’t know anything about Down syndrome. I’m glad I didn’t wait ten years before I offered my feelings about it because a ten-year perspective is so different from a raw three-days-into-it perspective, and they’re both important and needed. But I have learned a few things in ten years, and I’ll keep adding to this list as she grows.

Five things I’ve learned in ten years from raising a child with Down syndrome…

1. Everyone has hard things to deal with, and everyone deals with them differently. Validate people’s pain. Celebrate their victories, even if it looks different from yours.
When I shared about Down syndrome that first year, I received criticism for my disappointment about her diagnosis, criticism for being happy too soon, criticism for not sharing enough hard parts, criticism for talking about hard parts…you get the point. There is no right way to deal with hard things, and every person’s experience, acceptance journey, and pain reaction is different. I was recently told a story of a friend of a friend who was deep in grief weeks after being delivered some news I wanted to categorize as small potatoes on the “our hardship is worse than your hardship” scale that does not exist. I caught myself immediately. We do not judge someone’s pain by ranking it. Feelings are feelings, and if someone is hurting, they need love and support.

2. Don’t give your child special treatment.
It’s hard to specifically link Nella’s successes to things we’ve done because there’s no way to tell if it’s because of what we’ve done or if she’s just naturally gifted in a certain area. However, if there’s one thing we’ve done that I will attribute to her success, it’s treating her just like our other kids, holding her responsible, following through with consequences, etc. When she was a baby and I’d meet adults with Down syndrome who were doing things I wanted her to do, I always asked the parents what advice they’d give. So many parents said, “Don’t treat bad behavior any differently than you would if she didn’t have Down syndrome.” We never babied Nella or talked to her differently than we talk to all our kids. She deserves that, and she’s thrived because of it. Her school is the same. In the early years when she was reluctant to leave the playground or shut down during activities, all of the staff knew not to baby her. She’s cute and sometimes we are inclined to go easy on her because of the challenges she faces, especially if she’s crying; but I don’t want her shutting down or refusing to participate in the real world when she’s an adult and looking for a job. We make accommodations when necessary, but never at the cost of the high expectations she deserves.

3. It’s okay to change your mind.
There’s no need to proclaim, “This is the way we’re doing it!” when it comes to special needs, but if there are important stances you want to take regarding special needs issues, give yourself permission to change your mind later. Very much like any issue in parenting (“I’m never going to let my kids play with a device at dinner”), sometimes given new circumstances, you shift your viewpoint (“Let’s go to Chili’s so we can eat in peace while the kids play on those iPads.”). There are a lot of opinions and a lot of different issues in the special needs community–inclusion, education, therapies, etc. You don’t have to “take a side.” Do what’s right for your child and your family, and know that at any time you can change your mind.

4. Invest in friendship.
One of most beautiful areas where Nella is thriving right now is her friendships. She has friends who do not have special needs as well as a bestie (on our street!) who has Down syndrome like her. These friendships add so much happiness and value to her life, and we make a lot of efforts to spend time with friends and make sure their time together is meaningful–after school playdates, sleepovers, etc. I text mamas, drop off, pick up, plan ice cream dates and movie nights. We make sure her friends know how much they are loved. We print pictures of Nella with her friends and display them in her room, and the message to her is clear–“You’re loved. You’re a good friend!”

5. Community is the greatest gift.
I still laugh that I actually declared after Nella was born, “I just want to do this alone. I don’t want to be part of any groups or marches.” The Down syndrome community as a whole has become the greatest gift. It’s our second family, and the way that we support each other, rally for each other, share resources and love each other is phenomenal. I am so proud to belong to this community, and I don’t know what I would do without this family. We never feel lonely in dealing with any Down syndrome issues because our friends are dealing with them too. And the way we find each other? By sharing our stories. Vulnerability builds community. When you need something, people feel honored to help.