When I unzipped Nella’s backpack Friday afternoon, the first thing I pulled out was a Chuck E. Cheese birthday invitation for a little girl in her classroom. I’m sure it was tucked into every classmate’s backpack before they left and shouldn’t mean something special to me–why wouldn’t she be invited?–but the instant welcome to friendship in the first week of school hugged that little part of me–the part that dramatically played out the entire story of her life when she was born, and worried if she’d have friends or be invited to parties or feel part of the group. It is perhaps the greatest concern of parents of kids with special needs in school because while we know we will work hard to overcome challenges with resources, appropriate accommodations, academic growth and life skills, we also know that the underlying foundation to success is a sense of worthiness–of being loved and feeling a great sense of belonging in a community where we are recognized for who we are.
Last year in preschool, we didn’t feel the need to address Nella’s differences with the classroom–at least not in any organized way. They were all so young, focused on their own little worlds, just happy to be together and play, with little notice of how other students performed. But I was aware of a shift by the end of the year–the way her friends lovingly took on helping her, the way they looked at each others’ projects and bluntly assessed who scribbled and who stayed in the lines. Nella didn’t speak near as much at preschool as she does at home, and I’ll never forget receiving a video from her first year of preschool when she played a color game and finally spoke out loud. “Yellow,” she said when the spinner landed on the color. And right before the video ended, you could hear a little boy next to her gasp and yell, “HEY! NELLA CAN TALK!”
The fact is, kids are observant little sponges, perhaps well more aware of the world around them than their grown predecessors absorbed in their phones and schedules and to-do lists. And though we might think kids are naturally good-hearted and inclusive when it comes to accepting and interpreting differences so “why point it out if they don’t notice,” I’ve found they do notice. And they are naturally curious about their friends around them.
Going into kindergarten, I knew I wanted her class informed about Down syndrome–this year and every year–or at least until she’s like, “Mom, dear God, I can do this on my own.” Knowledge is power, and presenting our child’s differences in the way we want them perceived–which is basically what they are: a few different things that make her unique among a sea of things that make her like everyone else (see also: humans in general)–leaves no time or space for kids to form their own misconceptions or to assume, by no mention of it, that the subject of differently-abled individuals is something to be whispered about in private, and it’s not.
As one parent from this Pacer Center guide witnessed, “When there’s an obvious difference and no one is talking about it, children become confused and think there must be something ‘bad’ about it. When the children understood that the disability was not bad, but just different, many were eager to help him.” More understanding leads to more acceptance, loyalty and support. And this isn’t just for Nella. According to the National Organization on Disability, nearly one-fifth of all Americans have a physical, sensory or intellectual disability, and one out of 9 children under the age of 18 in the US today receive special education services. Initiating these conversations is vital for all of our communities. If these friends aren’t in your child’s classroom today, they will be in their communities tomorrow.
If you don’t have a child with special needs, you can initiate these conversations in your own home (I wrote this a couple years ago as a guide for introducing the topic of special needs to kids). And if you do have a child with special needs starting school and want it discussed (not everyone does, and that’s fine!), reach out to your teachers and school counselors about how you’d like it introduced. Schools will naturally protect confidentiality regarding your child’s disability and know that parents have different feelings on how they want them approached in school–so let your voice be heard!
We reached out to our school counselor and asked her to speak to Nella’s class without her present. Since they’re only in kindergarten, they don’t need in depth information on chromosomes and cell biology. But we do want them to know that Nella is smart, loves her friends, shares a lot of likes and dislikes and might need some extra help and support because of a little thing called Down syndrome that makes her unique. We also wanted them to give them ideas on how they can be her friend, help her learn and yet leave room for her to figure things out herself.
“What do you want me to share with them?” our counselor asked me. As a former teacher and mom, I needed to write this whole thing out for myself, but I highlighted the important things and handed it over to her with a “Love you, trust you, make it your own.”
Now picture precious little kindergarteners–the future leaders and workers and community-builders of our country–all criss-cross-applesauce on the floor, listening intently, raising hands once in a while to interject completely unrelated information like “my grandma’s cat died” and “can I get a drink of water?” but mostly, listening intently/playing with their shoes.
Talk about things that make us different: (Can you roll your tongue? Does anyone have any birthmarks? Freckles? Do you know anyone with allergies or asthma?) There are lots of things about our bodies and minds that make us unique, and many of these things are with us since before we were even born. Some of these things we inherit from our moms and dads and some things we have on our own.There’s a friend in our classroom who has something special that makes her unique. Our friend Nella has something called Down syndrome. Down syndrome is not a disease. It’s just part of who she is and what makes her different just like having different hair color or a special birthmark or allergies make other friends unique.
What is Down syndrome? Down syndrome is not a bad thing or something to be sad about! It’s just one thing that makes Nella different. She can do pretty much everything everyone else in this room can do–she can talk and run and play with friends and dance and learn to read and write her name and make art, but because of the way Down syndrome makes bodies work, it might take her a little longer to do these things, and she may need a little extra help from teachers and classmates. You might not always be able to understand her and sometimes her school work might look a little different, but she is trying her very best and is proud of her work just like you feel proud of your work when you work hard. Nella loves to learn and watches and listens to everything around her. Anyone who loves to learn and keeps trying, no matter how hard things are, is VERY SMART.
Focus on similarities: Down syndrome is just a very small part of who Nella is. Even though Nella might learn to do things a little slower and needs extra help, she is JUST LIKE YOU!
*She loves to swim and play outside
*She loves to play with Barbies
*She is really good at playing games on her iPad
*She LOVES music and Taylor Swift is her favorite
*She likes watching shows on Nick Jr. and Disney
*She takes ballet
*She has lots of friends and loves to play with them
What can you do to support Nella and be her friend?
Sometimes when everyone around you is doing something that’s hard for you, it can make you feel bad or alone. We all have times when we feel this way, and we all have different things that are hard for us. WE NEED OUR FRIENDS to support us, help us and remind us that we are all an important part of the group. Remember what it feels like when things are hard for you to do, and think about what makes you feel better.
* You can offer to help Nella with things that are hard for her, but try not to do things for her if she can do it herself. She loves to be independent and do the same things her friends are doing.
* Even if she doesn’t say as much as you do, still talk to her! She understands you perfectly.
* You can play with her at lunch and recess and make sure she knows her friends love being with her.
* If you can’t understand things Nella says, be patient with her and ask her to repeat it or ask the teacher to help you understand her.
* Be a cheerleader. Sometimes if things seem hard to Nella, she may want to shut down and not try. Be a cheerleader and remind her, “YOU CAN DO IT, NELLA! JUST TRY YOUR BEST.”
* Compliment a job well done! Nella loves to be recognized by her friends for her hard work. If you see she worked hard on something and did her best, give her a high five or say “Great Job, Nella!”
Thank you for being such great friends to Nella. She loves being here and loves all of you.
Questions, questions, questions, ask anything!
There are several children’s books that deal with disabilities and differences. I personally love the non-specific themes of acceptance and different-is-rad such as Not Your Typical Dragon and Elmer—fantastic springboards for expanding into themes of acceptance and compassion–but you can find some great lists of books on specific disabilities such as these Children’s Books About Disabilities or this Goodreads list on children’s books that introduce specific special needs themes.
We also know that maintaining friendships and encouraging social growth will take extra efforts on our part for Nella. Providing play opportunities after school, inviting people over, etc. is important. My friend Stephanie, several years ahead of us on this journey, hosts a backyard movie night every couple weeks to foster her teen son’s friendships.
If any of you have any great ideas on introducing these themes to classrooms or tips for fostering friendships and making connections at school, please share in the comments!
This is all a work in progress. But as Nella’s mom, I’ve got three jobs every day that I know I can do: show up, speak up, and dream up. Onward, friends.