It was the first major weight I felt when we brought Nella home from the hospital, still reeling from her diagnosis…would she have friends? Would she be invited to birthday parties and chosen to sit with in the cafeteria at school? Would she have play dates and sleepovers and best friends on speed dial; or would her disability limit her socially, making it challenging for her to find what we are all wired to seek out in life–real, soul-filling connection? Advocacy for inclusion and improvements within our society and education systems have definitely helped change the typical social story for someone with special needs, but still–making and maintaining meaningful friendships and interacting in groups can be a significant challenge for kids with disabilities, especially when you add in communication delays, behavior issues, social quirks and classroom settings with curriculum rigor that doesn’t create the best environment for cultivating friendships and really getting to know kids.
There are so many factors that contribute to beautiful friendships, from parents’ attitudes at home and specific personalities of kids, to teachers who take great efforts to foster connection in their classrooms. In nine years, we’ve learned so much about what works and what doesn’t for helping Nella maintain friendships, and I’m so grateful that I can say Nella’s life is rich with beautiful friends. I want them of course to satisfy Nella’s heart, but I want them just as much for her friends because I believe loving someone with special needs and having close relationships at a young age with other kids who are different is not only deeply fulfilling for them but important for the success of our future workplace and community settings.
Things may change over the years, but we’re committed to doing everything we can as her parents to help her feel fulfilled in this area. I thought I’d share a few things we’ve learned today, and a some tips that have worked for us in building her little network.
Investigate
Just as with typical kids, our children are drawn to different individuals at school based on interests and personalities. We usually find out about these relationships when we ask questions like “Who did you play with at recess?” or “Tell me more about this Abigail you’ve been talking about.” We may then want to meet the parents, reach out for a phone number, set up a play date; but extracting these initial bits of information can be difficult with kids who aren’t as communicative or take longer to open up in group settings. So get in there. Ask the teacher if there are any kids in particular who seem to connect well with your child. Better yet, volunteer in the classroom or chaperone a field trip (I’m tagging along on hers this week!) so you can observe and get to know some of the kids. Some of Nella’s closest friends came from the early days of school when we were tipped off that a couple of little girls were drawn to her like magnets. Volunteering in her classroom allowed me to see these relationships up close, and soon I was reaching out to their moms, simply to let them know how much our family appreciated their daughters’ friendships. To this day, these kids and their moms are part of our village. Every bit of information we receive about Nella when she’s away from us is a tool in helping her move forward. Socializing is just as important as academics if not more, so make sure when you’re asking about academic progress and receiving reports about math and reading, you pursue all the information and stories about friends and social groups as well. Find out a little girl named Julia holds your child’s hand every day and asks to sit by her? Get on that! Introduce yourself to Julia’s mom.
Thank the Parents
It’s not that we think signing up to be Nella’s friend deserves a trophy. Believe me, we’re being thanked as well because the value of friendship goes both ways. But I’ll always be connected in some way to that old me who had so many fears and worries, and I can’t help but feel especially grateful–to the point of wanting to shower every one of her friends with love–when I watch Nella arrive at school and be mobbed with hugs and high fives. There is connective power in honest vulnerability, and every parent loves hearing how wonderful their child is. So I’ve sent texts and still do to Nella’s friends’ parents, even the ones I don’t know very well, to let them know what their child’s friendship means to us. I remember one of the first texts I sent when Nella was in kindergarten–to a mom whose little girl showed a remarkable gift for loving Nella, treating her just like everyone else while subtly helping her when she needed help. “I’m Nella’s mom,” I texted her, “and I just want to tell you how much we appreciate your daughter. When Nella was born, it was one one of my greatest fears–that she wouldn’t have friends–and watching your daughter be such an amazing friend to her has brought me and my husband so much joy and has made this transition to public school so much smoother for us. Thank you for raising such an awesome kid. We look forward to getting to know your family more!” She texted back, “Honey, you say the date, and we’ll be there. We love your Nella so much!”
When kids are little, parents steer the ships, set up the play dates and represent a big part of maintaining relationships. Connect with the parents to further connections with their kids. A simple “Thank you, your kid is so special and we are so grateful for this friendship” is a great way to start.
Think About the Presence of Siblings at Play Dates
This one has been something we change up now and then because there are benefits both to having Lainey and Dash around when Nella’s friends come for a play date as well as giving her an opportunity for a “just Nella” play date. Because Lainey is a kid magnet, kids are often drawn to her which can leave Nella hanging. Lainey’s usually great about pulling Nella in, but we try and schedule play dates sometimes when Lainey and Dash are off on their own adventures too.
Think About the Number of Kids You Invite for a Play Date
When Nella was younger, it was nice to have more than one friend over so there wasn’t too much pressure on Nella to be “on” and to give her friend someone else to play with if Nella needed a break. But she’s kind of matured out of that now and can hang great with friends on her own (yay!). Sometimes having just one friend over at a time is really special and keeps them focused on each other.
Find Common Ground…Get Creative!
I’ve been well aware that the learning and behavior gap between Nella and her friends grows more recognizable the older she gets, and I know finding common ground for play dates might get trickier. It’s easy when everyone loves Barbies. Find out what your child’s friends are into, and try and incorporate those interests in play dates to keep everyone having fun. There are a lot of activities that work for all ages, all interests and all skill levels–it might just take a little creativity exploring them. Things that always work for us: swimming, going to “Bounce” (an indoor trampoline park), karaoke and dancing with microphones (especially if I know what hit songs the kids are loving), sidewalk chalk, crafts, hide-and-seek, scavenger hunts, games (like Pie Face, Don’t Break the Ice, Hungry Hippos, etc.) and anything outside. I try and create an environment for independent play so Nella is socializing without relying on me to help, but sometimes she needs a few catalysts in place to get it rolling.
Talk to Your Child and Model Friendship Building Skills
Even though we make accommodations here and there for social gatherings, we hold high expectations for Nella and have the same conversations with her that we do with all our kids regarding friendships. In kindergarten days, sometimes she’d run off and want to be alone right in the middle of her own birthday party. While we made room for that and learned from it, we still talked to her about what her behavior meant, reminding her of how her actions affect her friends’ feelings and teaching her good manners. We still talk a lot about what it means to be a good friend which sometimes requires modeling conversations and scenarios. One time, I about died at the park when a little girl came up and asked, “Can I play?” and Nella snapped back, “No!” I amended the situation and then ran to Heidi, mortified, muttering, “And there you have it. My kid who I advocate for people to include just totally excluded that little girl. Go figure.” Kids with Down syndrome are not “always angels,” thank you very much. Kids are kids, and many times they need to be taught and shown how to be kind. The bottom line is, I don’t just want kids to play with Nella; I want them to want to play with her which means she needs to be kind and supportive.
Hire a Babysitter
This one has been really helpful for birthday parties. We have a couple teenage babysitters who are magic with kids. When they initiate games, everyone wants to play; and because they’re familiar with Nella, they know just how to keep her involved. When there are big group activities, our babysitters provide just enough support to Nella (and another little girl with Down syndrome at our last party) to keep the activity from becoming overwhelming. Sometimes it’s nice to have someone else who’s not Mom providing a little support–looks more like training wheels on a big bike toward independence rather than Mom who represents more of a tricycle. Did I go wayward with that analogy? Because I can do that sometimes.
Find a Special Needs Extracurricular Class
Last year, for no good reason other than my own instincts, I felt it was important to find something for Nella where she could interact with friends who also have Down syndrome. We joined a little theater group and were immediately reunited with a friend we met when she was a baby. We have lots of friends around the country who have Down syndrome, and we talk and FaceTime with them regularly. We talk about the fact that they have Down syndrome–“just like you, Nella!” to remind her that there are lots of kids who struggle with some of the same things she struggles with. As Nella grows older, I know these friendships are going to become more important, so we invest in them. Lucky us, we benefit as well because we love our community of families and friends. If you’re feeling the need for your child to meet new friends, search out local groups and/or classes for kids with special needs. You can start Special Olympics as early as eight years old which is a great place to begin.
Take Pictures of Their Friends and Talk About Them
I’m passionate about this one because I’ve seen how powerful it is. When your child is together with friends, take pictures. Collect them, save them, display them in their rooms. Print a little book full of nothing but friend photos. That one birthday party we threw when Nella shut down and didn’t want to play much with her friends? I remember feeling frustrated like “Well, that was a wash” until she was sitting on my lap looking at the photos of the party a few days later. Her face lit up, and she wanted to study every image. She pointed to each friend, said their name, talked about them with the biggest smile and asked me to go back to the photos for weeks after the party was over. We hope as she grows, her friendship circles continue to swell and that she always feels rich in that area; but we know that it can become more challenging, especially in middle school and high school. The photos help support the truth we always want her to know in her heart, no matter how many birthday parties she gets invited to–Look at all your friends! Look at all the fun you’ve had with them! My goodness, you are a lucky girl! Even as I’ve type this post, she’s walked in my office and completely lit up when she saw the photos on the screen. “Go back,” she asked, prompting me to scroll up so she can take them all in. In fact, I stopped and put a quick print order in of the photos in this post so we can display a friend board in her room. Here’s another good reason to take these photos: When all these friends show up at her high school graduation open house someday to celebrate her, I want them to be reminded of all the memories and all the years they’ve shared together.
This is what we want for our kids, and this is what they all deserve…connection and love and someone to spill their secrets to.
We hope it all happens naturally and without much effort, but even for our typical kids, sometimes they need a little support. My friend who has a grown daughter with Down syndrome (with a huge circle of friends, by the way) calls it “putting your mitts on.” Get involved.
“I am not ashamed to tell you I rented a bounce house once to get the kids over our house,” another friend laughed and admitted. “The neighborhood kids came, and my son met two new friends who became close buds.”
Whatever the case, we’re here to watch these beautiful friendships grow over the years. Pop the popcorn for the sleepovers. Wait for the first photo to be texted showing what a good time she’s having at the homecoming dance.
Why are these words offensive? In the case of actually making fun of people with disabilities, I think it’s a given–you’re just an asshole, and it will catch up with you. Deliberately making fun of a marginalized group of people who spend their entire lives fighting for a sliver of the opportunities, friends, jobs and attention that naturally come easy for you simply because of the physiological coincidence that, up to this point (remember, anything can change), the cells in your body and mind have functioned in a way that makes things relatively easy for you–well, that says far more about you than them, and you’ll have to carry that and deal with it throughout life.
Do I still have people in my life who use the word? Yes. And they’re good people. Most of the time, it slips and they immediately stop and say, “I’m so sorry. I don’t know why I said that. I hate that word.” It was sloppily used in everyday language for a long time, so I understand that it takes time for people to recognize how insensitive it is. Usually, if it’s a friend, I just smile and interject, “Can’t use that word, but go on–what were you saying?” And it works. We have had people we love continue to use it–people who I know are good and loving and care deeply about Nella, yet the word is still thrown around–“I felt so retarded”–like it’s no big deal. Keep speaking up though. Recently I had a deeper conversation about it with a friend who I finally interrupted.
For me, it’s easy to address because I have a child with an intellectual disability who is my heart. It is easy to explain to people how much I love her and how much it would kill me to watch her hear that word, knowing it’s been used for years as a joke with an underlying punchline that says that an intellectual disability makes you lower than everyone else. Because that’s exactly what you’re saying when you use the R-word or make intellectual disabilities a laughing matter. Because of that, it is easy for me to advocate. To speak up over and over and over. And I only hope that all of you have the privilege of loving someone like Nella too.
I fell in love with the dolls that subtly capture in the most beautiful way those special little features we love. And I fell in love with the shop and the way they curated their products and the thoughtful way the dolls were being sold–wedged in between all the other beautiful dolls that had dark hair and blond hair and brown skin and white skin and Asian eyes and almond eyes–all photographed and categorized in this beautiful collection of dolls that celebrated all kinds of differences, no big deal. For the first time, I wanted a doll with Down syndrome for Nella, and I wanted it bad–so bad, I woke up early to make sure I could put one in my cart before they were sold out. I wanted to give it to her and tell her it was a special doll–a doll that had Down syndrome just like her so she could add it to her collection of all the other dolls that are just like her but know that this one shared something extra.
