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.
Jennifer Reil says
A cousin and a friend shared your blog with me after I got the diagnosis that my baby would have Down syndrome. Another cousin sent me your book Bloom too. I had received a few books about Down syndrome at that point, but your’s was the first I read and I am so glad I did! My heart was broken at the time, but you shared all of your emotions, the good and the not-so-good and that helped me heal. My little girl turned 2 yesterday and now I think, “Man, why was I so worried about her having Down syndrome?” Of course, I still worry about her, just as I worry about all of my children, but that’s just because I love them so! Thanks again for being open and helping others, it is a gift you give us!
Sarah minter says
Nella seems to be such a great kid and I’m so happy she is developing friendships that she cherishes.
I’m a first grade teacher and I’m just curious about the “wand” and what needs it seems to serve for her. Does she carry it all the time and at school?
Sarah C says
Wow I really appreciate this follow up post. I’ve very much enjoyed following your journey over the years.
Elizabeth Stone says
I read Nella’s birth story while sitting at my desk job 10 years ago. Little did I know that 8 years later, I would receive a prenatal diagnosis of Down syndrome at 17 weeks pregnant for our son, Emerson. He’s 18 months now, and the absolute pride and joy of our family. Your story gave us so much hope and now we are so proud to be a part of our awesome community, too!!
Suzan says
Your post is beautiful. I used to teach special education and it was informed my parenting. No one does it alone. Each child is so very different and there is no one way to deal with each problem. Great job and well done/
Jennifer B. says
Big yes to #2. After following you and becoming a Ruby’s Rainbow supporter, I started following a few other families who have a child with Down syndrome … to learn more. I’ve had to unfollow a couple because they don’t discipline the child and then wonder why they misbehave. It was hard for me to watch. I think children often rise to the occasion when we set high expectations for them.
Maxine says
I’m quite sure that there’s so much more than just 5 things you could write of, but Thank you. I love the story of Nella and your journey. I believe that DS awareness has exploded in the last 10 years simply due to your story. I know it has truly made a difference to me and I don’t even have any personal aquiantance with DS. Thank you again for sharing your story.
Monica Utt says
10-years-old? NO WAY! She was just born! I was just crying the other day as I celebrated her taking her first steps! How in the world did she get to be ten? OMG, that means I’m 10 years older! Okay, let’s not even go there….
Danielle says
Amen!
I started following your blog/IG shortly after Bloom was published. I literally picked it up at random one day while in the bookstore because I thought the cover was beautiful. I remember crying while reading it, because I was so touched by your honest assessment of how you felt and the beautiful way you shared it. So many of us moms are taught by society to keep it to ourselves. Like because we wanted to be a mom we should always just be happy or grateful for what we have. But sometimes its not the way we thought it would be and you made it ok to grieve when it doesn’t look the way we thought it would. You inspired me back then and continue to do so now. Thank you for helping me be less judgmental and more supportive of those who are different than me. Feelings are feelings and we all have them.
Happiest Birthday to you Mama! Ten years went quick. 🙂
Katie says
I started reading your blog when Nella was born. Watching her grow has been a true joy. But I will say – watching you grow and change as well as the rest of your family has been so beautiful as well. Cheers to many more wonderful adventures and thank you for sharing it with all of us.
LeighTX says
This advice is spot-on for ALL parents, regardless of their child’s needs! Very well-put, especially the bit about changing your mind. As a parent you will say and do things you swore you would never, and the way you do things for one child may be the opposite of what you do for your second or third child.
My oldest is about to graduate from college and my youngest about to graduate high school, and the biggest gift I gave myself as a parent was to accept that I’m doing my best for each of them, and that has to be good enough.
Katy says
I recall having a four year old and being pregnant again, and stumbling on your blog searching for birth stories. And SOBBING. Like choking, can’t read the screen, sobbing. Because it was all so raw and beautiful and loving and real. When we share our selves honestly and vulnerably, we become a part of a community of humans who are seeking and finding connection – thank you for putting yourself out there. I’ve shared that story more times than I can count (I teach childbirth and new parent classes) and I know it’s helped many, many families to not feel alone. Happy birthday, Nella, and Happy Birth Day, Kelle.