YOUTUBE VIDEO TRANSCRIPT
How do I tell other kids about my kid’s disability? Why don’t you grab your cup of coffee and let’s discuss.
Now, there are some parents and some schools that feel it’s best not to share your kid’s disability. But I know it only takes a few seconds for other people to figure out that something’s different with Knightly, even kids. And, without explanation, they can come up with answers on their own. How do I tell other kids about my kid’s disability?
What I found is powerful.
I need to give a special thank you to the awesome team at the Down Syndrome Foundation of Orange County (DSFOC): The Learning Program. These families created these booklets that they passed out 10-15 years ago to their kid’s classmates and it totally worked. So I copied, pasted, edited for what was needed for Knightly and VOILA!
This is meant to be a book for kids to read with their parents.
Commonality is powerful.
In every page, I am looking for images and stories and just phrases to show a way that kids can connect with Knightly. Not only does it help the kids be able to feel they can connect with someone like Knightly, but it also helps the parents kind of navigate the questions their kids may ask through the school year as they interact with him. I include a letter to parents and educators that I put inside the booklet to explain why I’m giving it to them and, below in the video description, I will have a link so you can download the letter yourself if you’d love to use and customize it for people you’ll be handing it to. It includes our contact info so that parents can always call or email if they have any questions.
All right, it’s story time!
Hi, my name is Knightly. I am 7 years old. How old are you? What grade are you in?
I live with my family. We like to travel, go to Disneyland, and eat good food together. What do you like to do with your family?
My favorite things to do are dancing, being around water, and playing with balls. You can ask me to play these with you if you see me. Most of all, I love to play my service dog, Cadbury. He is a good dog and helps me feel better when I’m scared. I also love high-fives and saying,
You may notice that I get help from some people throughout my school day. I need extra help in the classroom sometimes. Do you need extra help sometimes? Who helps you?
When I was born I was diagnosed with Down syndrome. Do you know what that means?
My muscles are not quite as strong as yours. I need extra time to get to places and complete work in class. Kids like me can learn to do all the same things you do but I learn some things differently.
I just need to go at my own pace.
Sometimes, I need extra time to think of an answer. It can be hard to write so sometimes I use pictures or an AAC.
People may help me with these things in class.
I get to wear some cool things to help me out. I wear special inserts in my shoes that help me walk better. Sometimes I wore my chewelry necklace and I’ll chew on it to help my teeth feel better. My eyeglasses I chose are blue. Blue is my favorite color. What’s your favorite color?
If you ever see me covering my ears with my hands, it’s because some noises are scary for me. I may need to slowly warm up to the noises or I may need to take a break. Do you ever get scared?
I also have apraxia. What is apraxia? It makes it harder for me to speak and to learn to say sounds and words. I work extra hard every day to learn how to talk. I may take a while to respond when you talk to me. It helps if you ask me yes or no questions. I may also answer with my AAC device, sign language, or a picture.
Sometimes, I’m just shy. But I love making friends. Do you?
I hope you have learned something about me, about Down syndrome, apraxia, and people being more alike than different. Thank you for reading this book.
Even though I may learn things differently, I am always learning new things, just like you. I hope we’ll get to know each other and become friends.
HOW TO PRINT:
Please know you do not have to go all out and create like a booklet like this. You can make it a PDF, a PowerPoint, go to a local printer and get it done. We got ours printed through this awesome company Printworks and this manager named John, who’s super sweet. And I’m going to go ahead and put his link down below in the video description. This actually costs us $2.35/booklet.
The quality looks like a legit magazine if you want to do that. If you don’t, way cheaper to just go to Kinko’s or just print it out on your own printer and computer.
Not every school is gonna let you pass this out. We have been able to hand it out directly to parents after school when the kids are leaving and they get picked up. It’s a great way to say, “Hi, my name is ___. This is my kid. Wanted to share a little booklet in case your kid has any questions because my kid has a disability.”
Sometimes, the best opportunity to share is when the class has an All About Me sharing presentation kids have to give anyway. And this is a perfect time to give the book or create it in a PowerPoint or Keynote format or Google slides. Do a presentation and talk to the kids directly about why your child is the way they are.
I’ll say, “Knightly loves pizza. Does anyone here like pizza? Knightly loves blue. What’s your favorite color? Does anyone like blue?”
You start off with things that are easy and they have in common. Then, during the presentation, you can go into about how people are different.
You can say, “How many people here have black hair? Wow! Who here has blue eyes? Wow! You were all born differently. Knightly was also born differently. Knightly was born with Down syndrome and that’s something he has that just makes it harder for him to learn. It’s harder for him to talk and he’s been me sometimes slower at things than you are.
Knightly has apraxia which makes it hard for him to talk so he uses an iPad and he pushes buttons to be able to speak to you. Sometimes, he uses sign language.
Does anyone know sign language? What words do you know in sign language?
And he’ll need some extra help and time to do the things that you guys do. So sometimes, you’ll see people helping Knightly out.”
Then, I point it back to the kids that they can have an awesome opportunity to connect with a kid like Knightly and to help him out.
“Who here wants to be friends with Knightly? Who here wants to help him when he’s scared or if he’s lost?”
And by this point, every hand is raised. I like to end with, “You know what Knightly’s favorite thing to do is? It’s DANCE!”
And then I play a song with his favorite thing that he’s been dancing to. And then he’s up and jumping dancing around. And then all the kids can dance. It’s a really fun way to end.
And if you want to, some parents can give out treats, stickers goodies but you don’t have to. I mean, you can only spend so much money so give yourself some grace.
It’s been years since I gave out that first booklet and those kids to this day will mention the booklet. We actually were at the playground the other day and ran into four of Knightly’s old classmates and they were mentioning the booklet.
One of the kids, a newcomer, heard them saying Down syndrome. And he asked, “What’s Down syndrome?”
And one little girl was so cute! She said, “I have the book at home. I’ll read it to you and explain.”
That was amazing!
TOO HARD! DON’T WANNA DO IT!:
That’s okay. You do not have to do one more thing on top of everything else you’re doing. This is an idea. You can say no. You can say maybe later, maybe another year. It can be really emotional to find the words to describe what challenges your child faces. And from one parent to another, we can go in and out of grief and that doesn’t make you less of a parent. It doesn’t mean you love your child less if you’re grieving or if it’s too hard. You are doing everything you can and that’s okay.
So…if and when you are ready to talk to other kids about your kid’s disability.
LET’S DO THIS:
We get to guide the culture’s conversation on disabilities, starting with your kids and the kids that your kids are gonna grow up with. So here you have an opportunity to build a community for your kid with other kids who’ll understand.
We get to share the truth and the beauty and the hardship of what this journey is like, so let’s do it together.
WANT A COPY?:
If you would like a copy of the book or the letter or something that you can even edit and just copy and paste, it is down below in the video description. Download links are provided.
Thank you for joining me with a drink and conversation. Like the video and subscribe for our future coffee sessions. Leave a comment with how you shared about your kid’s disability or just about kids in general. Every kid’s got their thing! How have you navigated those conversations?
How do you tell other kids about your kid’s disability? How do you talk about, explain disability, even mental disability, in the classroom or to a child? How can you teach your children about peers with special needs?
Found some time-tested methods that are POWERFUL. This works.
Parent/Educator Letter: https://drive.google.com/open?id=1Kgj…
All About My Child Book PDF: https://drive.google.com/open?id=13lt…
All About My Child Editable Doc: https://drive.google.com/open?id=1vKl…