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Oh Say What You Say


We were at a friend’s birthday party recently. It was held at a party place with a bouncy castle, a ball pit, and a mini-basketball hoop game. There were things to climb on and throw. Music to make. Games to play. It was a kids dream playroom. It wasn’t huge but it was well organized with soft mats on the floor so everyone had to leave their shoes in cubbies upon entering. The party room for pizza and cake was in the back of the play area. There was a mostlyclear path from the front to the back so we could easily wheel Sebastian back, park his chair, and take him out to play. Of course we were nervous first, wondering if it would be suitable for him. Wondering what he would be able to do. But we always help him do everything he wants to do, which is just about whatever his sister is doing or can do, with the exception of full independence of course. He’s happy regardless.

We were a bit late to the party and everyone was in full party mode when we arrived, jumping and screaming, but when we arrived and as we made our way back to park Seb’s chair, our friends greeted us and so did a bunch of the birthday boy’s friends. Sebastian hit his switch to say happy birthday, with a little help from me only because he was so overwhelmed by all the kids, color, and fun. H’s friends said hello and everyone was very friendly. After the message the kids went on their way into the bouncy castle and we parked and decided what to do.

Adults are funny. It wasn’t until after ali was asked by one of the other kids during pizza time that a couple of them felt comfortable or interested in coming to say hello to Sebastian, in very big ways. I had left the room and ali told me how all the adult conversations stopped one by one so they could overhear the conversation between him and the little girl sitting next to Sebastian. ‘Why does he have a bib? Why can’t he feet himself? Does he talk? Why can’t he walk by himself?’ Afterwords the mom of the girl came up to me and said ‘so your son is special needs?’ Kind of surprised at her approach, I nodded and said ‘he has cerebral palsy’ which to most people is like speaking a foreign language, so I added, ‘it’s a motor disorder caused by (in his case) a traumatic birth/brain injury at birth. It affects his movements.’ Her reply? ‘So what’s it like in a daily basis? How do you manage?’ I just looked at her. I wonder what my face looked like. Shocked. Incredulous. Before I could respond she added ‘it’s so nice that he could come out today and be here.’ You know. Living his life among the normals. Suddenly we were interrupted by her younger daughter. She was nice. She had good intentions. But her words made me sad. How do people really think that because you have a disability you can’t enjoy life?

I’ve written about the neighbor kids before. A couple weeks ago I was feeling frustrated and a bit down; the kids were always so excited to see Tallula but still weren’t greeting Sebastian directly. I would let them know how excited he was to see them or say he said hello or goodbye but nothing worked. They certainly noticed him but didn’t speak to him. Sometimes they would talk about him but never to him. I was telling ali that I didn’t know what to do short of making them talk to him and then the next afternoon everything changed.

Sebastian rode the bus home from school. The neighbor kids ran up to wait with Tallula and I for him to get off the bus. Then they said hello directly to him. Over the past couple of weeks they’ve gone from being unsure of how to include Sebastian to asking him questions instead of asking me. One of the girls in particular likes to wait with him until he gets on the bus in the morning. And one afternoon she told him she was worried that they had missed waiting for him to get off the bus. She said ‘Sebastian! I’m so glad you’re here. We thought we missed you.’ They asked him if he had a good day at school so when we got to the porch we go his switch out. Tallula hooked it up as is her routine and Sebastian shared his messages from school with the kids who were so excited and asked questions or commented for each message. Sebastian was so happy. Like any kid he loves attention but we’ve fought hard for it so he was really glowing with happiness.

The day of the Terry Fox Run they saw he also had the same tattoo and a certificate. They heard his messages about doing the event that they had also done. ‘But how did he do it if he’s in a chair?’ We talked about his walker and how fast he is in it. They saw that despite their differences they have some things in common.

Every conversation they have with him means so much more to me knowing where we started. They continue to ask questions like ‘what kind of bed does he sleep in? Is it like a normal persons bed?’ I try to react and answer in a way that doesn’t make their question too incredulous because I don’t want them to stop asking. But I do want them to see how they are all just kids who like a lot of the same things. (He has a bed from ikea by the way).

Tallula’s dance teacher
Last week I called the teacher running the Dance with Me Class Tallula and I are taking after she did something in class that I didn’t appreciate (deliberately skipping over/leaving Tallula out because she had moved spaces in the circle). As we were talking I told her about the program Tallula goes to on Tuesday’s that meets kids where they are and allows the freedoms of movement etc. I explained it was an integrated program of kids with varying needs and typical, mentioning that she has an older brother with a disability. I told her that she is very aware and didn’t appreciate being skipped over, which was evident when she stood to ask for the song page handout and was still ignored. (Why are we still in this class?) Somewhere in the conversation the teacher said to me ‘she’s dealing with that (meaning her brother’s disability).’ As if it was a reason for her ‘behaviour’. News flash: Sebastian is her big brother. Period. I was really taken aback as I’ve never had someone say that to me about Tallula. On one level it’s like that nurse that asked when Sebastian was nearly 3, how are you coping? I didn’t know how to respond immediately so just said that they are very close and left the conversation with a bad feeling in my stomach.

People really are clueless. And sometimes they warrant my time and energy and sometimes they don’t. Some situations are great teaching opportunities. Like our neighbors. I will facilitate that relationship in any way that I can. And sometimes they just don’t fit into our lives. Like the dance teacher. And the birthday party? It’s kind of like a bridge connecting the two. Planting the seeds that someone else will sow.

Is it any wonder why I speak out about the necessity of inclusion?


3 thoughts on “Oh Say What You Say”

  1. It’s not by accident that you are an educator, Sebastian and Tallula will make a difference because you pave the way. You are a Pioneer, you have stamina and walk in God’s grace. You are beautiful and I am thank full you are my daughter. I love you.


  2. Yea, people say some funny things. Your better than I, I never share diagnoses, it doesn’t explain who my friends are and you’re right, people rarely know what they mean.

    At least she said Special Needs. I should go to dance class with you too and show the teacher how unruly I am because I’m “dealing with my brother” having a disability.

    My rule of thumb is, never share more than you feel is needed or deserved, be okay with giving people one word answers and then ignoring them to take place in your child’s enjoyment and always be kind and let people know if they says something wrong or why it’s not okay to say such things.

    Good luck momma! You’re one tough lady.


  3. Oh Kara, I am so glad the kids next door are starting to see Seb as the amazing kid he is! As for the adults you’ve come across it’s so frustrating and disappointing that people think like this and then say it out loud! I can really empathise with the seemingly constant educating xx much love to you all x


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