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!
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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.
Jenna says
Thank you! I appreciate you sharing your heart as you navigate this journey. It blesses others so much!!
Heather Rodriguez says
Fantastic post my friend! Will be sharing it with the Syracuse crew! <3
Danielle Woodruff says
This is a great reminder – not only for kids who need extra help, attention, etc. – but for all kids. Each persn has feelings and we are all unique in our own way that we need to provide love and friendship to everyone regardless of your disabilit. Thanks for sharing this. I now have a way to share with my kids how to explain Perkins differences.
Steph says
Thanks so much for posting!!!! Hazel is starting school, Junior Kindergarten, this year. I agree with you that kids at that age don’t really notice as much, so I don’t want to centre her out. I decided to make an ‘About Me’ book for her teachers. She too, is so quiet at school. I figured address it a little for those that have questions and also give the info so they know her a little. Kinda like conversation starters. I added pics so Hazel can read along (and kids at that age loooooooove pics). Here’s to hoping. New adventures and all that. Love your book suggestions!!!!
Erica says
This is perfect timing. We just relocated to begin our second overseas tour. My girls have been in smaller sized classrooms for the last few years in international schools. For the most part, the kids all “look” like them. Although they are all international, they are mostly white, coming from upper middle class to upper class families. The cultural diversity is a great experience but the actual diversity is definitely lacking in some aspects.
My third grader has about 12 kids in her class, one little girl has Down Syndrome. For the first couple of days I asked about all the kids in her class. I asked if one of the little girls had her own aide. My daughter showed no signs of thinking the girl with D.S. was really any different. Although she did mention she spoke no English and kind of “wandered around” a bit. (This is an English speaking school but there are many students whose first language is not English. My girls are used to that and know that in time the kids pick up English pretty fast).
This post just reinforces my gut instinct to just tell my daughter about Down Syndrome. I want her to know why she may not speak English or learn it as fast as the other students. And encourage my daughter to notice the things they have in common and how the girl contributes to the classroom. I am glad I read this post 🙂
LH says
I work as a pediatric home health nurse, and attend school with some of my patients who have various physical and mental disabilities. One piece of advice I got from a parent was if questions are asked from a friend to an adult, direct them towards the child! ( if possible) They often have a better way of saying it than we could come up with! And almost always, kids are just looking for a simple answer. My patient once explained why he wore a backpack with a feeding pump on by saying” I was born a little early so I have a few extra gadgets!” The kids thought it was so cool and moved on in about 2 seconds with their lunch conversation !
Sharon Germany says
Thank you for sharing this, I truly appreciate it. I want to do this for my son, Robbie, too, he starts K on Tuesday. I am so scared though. How soon was the in-class discussion? I’m thinking of doing it the first or second week of school, but I’m not sure when it would be appropriate?
Kelle says
I love the idea of the second week. The first week gives them time to know him and love him–so when the conversation is introduced, there’s already a sense of community and loyalty established by the teacher. Good luck!
Sharon Germany says
Thanks so much Kelle!
Jennifer B. says
I love this. We never had any kind of discussion like this in school, and I think, “What a difference this might make … if every kid heard this during kindergarten and first grade.”
I remember having a mandatory class as college freshmen about diversity and how we were all more alike than different. Wouldn’t the world be a great place if we all learned that from the beginning.
Bravo for taking a stand and trying to make that happen.
Kerry says
Thank you for this. I have a 19 month old daughter with Down syndrome and lately, seeing all of the back to school posts has me thinking a lot about that transition and how fast I’m sure if will come for us. I panic thinking about how to put together something that would describe Down syndrome to other younger kids but this really hits in the nail on the head. I’m saving this for future reference.
Courtney says
Thank you for this! We are working diligently in our house on what makes us different, why we’re all special and unique, our differences make things hard for some people and that’s OK, etc. and this is going to be something that I will integrate for my kids. This is very important. We have not personally known any kids yet with a disability, but the kids do notice people in public with challenges and this will help me talk with them about it. My mom has MS, so that helps a ton because “Grammy has a special chair, just like that guy, Mom!” but we need to explain things better. You and this post will help me do just that!
Lynn Richards says
You, Kelle, are carrying the torch. We did this when Brenna was finally taken out of the public education system here and put into Montessori. And we never stopped. We engaged her classmates by putting a book in front of them and then moving it back and forth to simulate Nystagmus. We put a weight vest on them to simulate how it’s a little harder for her to jump or run. The kids were fully engaged and actually had a great time. We did this in fifth grade, we did this in junior high-we had people come in and speak to every class about disabilities because we began a special ed program at a private school. It has since grown and the lives it has touched and changed are aMAZing. Both disabled and non disabled. I applaud your efforts. It’s a long road. I’m on the end of having my girl out of school and figuring out how to make her days full and meaningful. Carry on!
Mary Playter says
Lynn, our friends’ granddaughter had nystagmus. and had very successful surgery. Check out her story here: https://www.youtube.com/watch?v=PVx9pQfi4KM
jessica says
THANK YOU!! I have a one year old with down syndrome and 4 older kids. My kids came home with birthday invitations too and I was excited for them. They love parties. The next day as I was cleaning my mind started to wander and I started to cry. What if my son never knows what its like to be invited to a birthday party. What if he comes home crying because he can’t keep up. There are so many “what if” thoughts that I have and I totally needed this!! Thank you so much!
Sandra McElwee says
You are absolutely correct. Kids will draw their own conclusions of adults don’t address the obvious. When my son was in kindergarten the teacher read a generic book about a boy with DS TO the class. At that age they are very concrete and didn’t relate the story to my son at all. So in first grade the teacher helped me make our own book–very primotive on the computer–and she read it to the class and it made all the difference in the world. That book is available for download and offered as a template for others to use to make a personalized book for their children at sandramcelwee.com
Rebecca says
Hi Sandra! The link to the template isn’t working for me from your website- are you able to provide a direct link? Thank you!!!
Natalie Runyan says
I found it, listed as “Get To Know Me Lesson Plan” here: https://www.ndss.org/about-down-syndrome/publications/
Marsha says
Thank you for this heartfelt post Kelle! I want to do this as well when Linc goes to kindergarten. Love love love!!!
Cherisse says
Just when I thought I couldn’t love you more…you go and write this! Your book was vital to me during the time of my prenatal diagnosis. I know have an amazing 2 and a half year old and you inspire me to be a better mom and advocate for him. Thank you for just being you!
Kristy says
Have you ever read “Someone Special, Just Like Me?” The photos are dated, but I love it. I taught high school students with special needs once upon a time, and though the book was obviously for a younger set, I so loved it. It sat on a shelf in my room, though it was never read by anyone other than peer tutors.
Deb says
This is wonderful! We made some great strides in this area at my son’s school last year. He has mild autism and we hadn’t really addressed the issue as he doesn’t have a lot of outward behaviors and kids his age (second grade last year) can’t really tell him apart because he has some more subtle social differences. Last year he learned about actually having autism and decided on his own he wanted to share with the class. First he worked with a social worker who ran his social skills group on how to talk about it.
It worked really well because the week before they’d had a special assembly having to do with “differences.” This was related to a child who has alopecia (baldness), and they brought in an adult who had it to share and sort of de-mystify the whole thing for students. Then the next week they had an autism awareness day, and he decided that would be the day to share. It actually led other kids to opening up about what makes them “different.” I highly encourage parents to work with teachers and other staff in the schools to make moments like this a reality for their kids!
Nancy says
When I was in third grade a little girl moved into our school (Kindergarten or first grade). She had some type of growth disorder that resulted in stunted leg and arm growth. Her parents actually bright her around to each of the classrooms in our school and talked about her condition and let her show us fun things she loves to do, etc. That experience e always sticks with me because it so clearly broke the ice. Instead of feeling like we shouldn’t look at her or should whisper about her, it seemed to bind the school with a connection. She was someone extra special and she was ours. That sounds odd maybe, but it did feel like she was ours. We knew her story and felt blind to her. Dear girl probably got more popularity and attention than she knew what to do with as she became kind of our personal school star.
Nancy says
Lots of typos. “Bound” to her. Not “blind” to her.
beebee says
Thank you so much for this – my little girl just started kindy too and there are a couple of children with disabilities in the class, including a boy with Down syndrome who sits at her table. This is the perfect guide to how to speak to my child about children with disabilities.
I’ve been following your blog since Nella was born, it’s a treasure – thank you!
Jeanie says
That was fabulous!
anne says
you are absolutely THE BEST !!! so many thanks for sharing your heart and your life with all of us, and know how much we all love it, appreciate it, and share it with others who need it, want it, and appreciate it also !!
Kelly Cooper says
This is so beautiful! I enjoy your words and pictures daily! My daughter, Gracie is 11years old, in fifth grade and has Down Syndrome. She has been mainstreamed since pre-school and she has had lots and lots of wonderfully “normal” friendships. Her very best friend, Grace is one she has had since kindergarten. They are inseparable.
I work for Best Buddies in Las Vegas and piloted an Elementary School program last year that helped to foster inclusive activities and build friendships between kids with and without intellectual and developmental disabilities.
One of my challenges was overthinking about how to present disabilities to the students.
What I found was exactly what you said, they already see the differences and letting them ask questions really made them more comfortable and open to make new friends!
Thank you for this post:)
Averyl Minori says
Hi Kelly, I live in LV as well and would love to help out with this progam, could you give me more details??
Jocelyn says
This is SO helpful!! Thank you for sharing your approach! Julia starts Kinderfgarten in a typical class on Tuesday (Birmingham, Mi ????) I was wondering if you had anything communicated to the parents like a letter, or was it solely focused on the students?
Thanks again! Love that our girls are on parallel journeys!
Alice says
Thank you for this! My daughter, Gemma, also just started kindergarten. I’m going to share this with her new teachers and counselor. <3
MB says
Thanks so much for this! I’m left wondering how you’ve broached the topic of DS with Nella. My daughter is 3 and I’d like to start helping her have a positive self image of DS, but am unsure how to start informing her about it. Any thoughts or resources are most welcome!
Janessa Lambert says
Thanks for all this helpful information. My Charlotte is 2 years old and I am already worried about inclusive classrooms and how that will look in 3 years. Appreciate all your openeness in sharing with us.
Hailee says
I think that is such a great way of introducing Nella to all of her new classmates and friends! Kids are VERY alert and definitely notice subtle differences and if they are unaware of what that all means it can make them uneasy because it is different from what they know.
I remember growing up and seeing children who were different intriguing but was never taught how to apprach those situations because I didn’t know how to act. I will never forget in 1st grade when my teacher sat with us in a circle and talked about a boy who was diagnosed with Lukemia and explained what that meant and how he will lose his hair. He fought the disease and finally was well by the time highschool started but it was a long hard road and we always supported him when he was able to learn in the classroom!
When I was a bit older around 10 our neighbor had a daughter with special needs and that opened up my world to so much compassion, patience, and understanding for others with special needs. Brandy was so smart and sometimes she even outsmarted me! She will forever be an adult women trapped in a 12 year olds mind frame but she is always such a delight. I definitely underestimated her abilities but when I talked to her or promised her something she always remembered! She did quirky things like crinkle paper but it is what made her unique. She loved playing bingo and even if it took 45 minutes per game it was still fun. She also loves Disneyland and goes on the rides and loves sweet treats just like you and me! Those experiences I cherish deeply because they taught me to never judge a book by its cover. Just like my friend whose sister was out on the streets dirty and lost, you would assume drugs took over her life. The fact of the matter is, she stopped taking her skitzophrenia medication and ran away from home and wasn’t found until a few months later by her family and has never done a drug or drank. It’s always easy to assume but if you take the time to get to know someone and be educated it can open your eyes up to the beauty in each and every person!
Carolyn says
Thank you so much for this. Your words are sure to help many parents and teachers support the idea that difference does not equal deficit and to encourage children to look for that light that we all have. So grateful for you.
Tracey says
On the second week of school I sent a letter home to the parents, explaining Cerebral Palsy (both my twins have it) in a way VERY similar to what you just wrote. This is who my boys are (identical twins, isn’t that cool?!), this is what CP is, this is all the ways they are just like you, and these are the ways you can support them. I heard from many parents how helpful it was and my boys’ teachers have been very good at open conversations when the kids have questions. Knowledge is power!
Leah Ritchey says
Hi Kelle! Not sure if you realized it or not, but our Charlie is in Nella’s class! I love seeing her at school. Charlie has spoken of Nella a few times and says such sweet things about her! That was such a great idea to have the counselor speak to the kids. You are such a good mama, and person in general!
Tiana says
Hey Kelle,
When I was younger, and growing up in a different country, in high school a kid who maybe had some form of autism entered our class. We all knew something was different about her instantly. Sadly there was a lot of taboo around autism and maybe thats why her parents chose not to speak about it, and I understand. But that definitely created a situation where we thought it should be whispered about, where we showed I think more pity than empathy. She seemed to have studied in a special education school before and was moved into a regular school and then at the end of the year moved back to a special education school. I really think in retrospect if they had educated us- the teachers, the parents, we could have been so much better cheerleaders for her. I read this blog thinking so many times- I wish we had reached out and made friends with her, cheered her along, I wish I could go back and change things, for her, for her parents, invite her to my birthday party etc…. So i am so so so glad you are showing how this is done, how it can be done. Honestly my classmates did reach out to her- but I think we really did not know how cause she was not responsive. I wish we had been told more…and I am so glad you are doing that for Nella!
Tiana says
Just wanted to add, when i said she was not responsive I mean she did not respond as quickly in conversations, or to statements such as “Do you want to go for lunch” etc, like she was slightly confused, and since we did not realize, we took that as a, maybe she s not interested?…. in that sense i really really think if we had been educated it would have helped… anyway i am going to make sure my kid who is still a toddler understands this much better than i ever did 🙂
Gina Badalaty says
What a wonderful post! When my Amelia was in 1st grade, a great teacher at her school offered to talk to the class about Down syndrome, to make my daughter a part. She did and it worked wonderfully! However, with Amelia now in 8th grade, forced to suddenly attend a different school this year, and all the changes over the years, it was not so easy to maintain friendships. (Kids move a lot!) As she regresses further behind her her peers and struggles with speech, even with inclusion, she has difficulty with friendships. And to that a sprinkle of teenaged “I want to be alone” and you have a difficult situation to figure out for a parent who’s not great with people 🙂 That said, I’m wondering if I should talk to one of her teachers about doing something like this? Her school never did inclusion until we got there a few weeks ago. Scratching my head over this!
Madeleine says
Hi Kelle- my Dad uses a wheel chair and that inspired me to advocate nationally giving speeches on living with disabilities – there is a great puppet troupe called “Kids on the Block” they are all over the country and perform using large “Sesame Street-style” puppets on Down Syndrome, Spinabifida, and other disabilities (both seen and unseen). The United Spinal Association has an amazing (free!!) booklet on Disability Etiquette. The cartoons show good and bad ways to handle situations where someone is blind, in a wheel chair, etc. it’s like Goofus and Gallant! mister Rogers says “feelings are mentionable and anything mentionable is manageable” – keep fighting the good fight!!!
Kate says
SO. GOOD. Mama. Loving you, your heart and your family. xx
Paulina says
I am the president of the PTA at our elementary school. I think this should be a topic that is discussed in a General meeting at the schools. It’s a great way to bring light on the “how to” start with the ways to have conversations at home.
Kelle says
Yes! Love that you’re taking the initiative with your position. Thank you. xo
Liz says
http://momnos.blogspot.com/2010/03/on-being-hair-dryer-kid-in-toaster.html?m=1
Is a great resource on talking to the other students in your child’s class about disabilities also! As a former sp. ed. teacher and now classroom teacher I can’t support this practice more!