From the Archives of Our Special Needs Journey: A Special Needs Sibling has a unique set of experiences and emotions. I wrote this post, reflecting on when my daughter was about 5 years old; she is 13 months younger than Kyle.

I’ve heard that books can “choose you”, which is what happened to me as I was browsing the picture books at the library.  I wasn’t looking for anything in particular and, in fact, I was feeling a little rushed because Kyle does not like me to stop his stroller in one place for too long.  He would prefer that I keep on rolling and so to avoid a potential tantrum in the library, of all places, I kept us moving as I quickly scanned the books.  

That is when I saw In Jesse’s Shoes by Beverly Lewis.  I only grabbed it because it had my husband’s name in the title.  But on closer inspection, the subtitle read Appreciating Kids with Special Needs and the story is told from a girl’s perspective of having an older brother with special needs.  I didn’t hesitate to add it to our growing stack of library books to haul home.

I admit that I cry easily, but I didn’t expect a children’s book about being a special needs sibling to bring me to tears every single time I read it!  When Kaylie asks me to read it to her, I try to prepare myself and think, “I’ve read this before…there is no need to cry this time…just read it to her without really thinking.”  It never works, and Kaylie is used to me pausing mid-sentence when I get choked up.  Now the book is no longer borrowed from the library, but one that I had to purchase for myself and make a permanent part of our library.  

One day Kaylie said to me, “I wish I didn’t have Kyle as a brother.”  She was about five years old and was trying to express her feelings of being a special needs sibling.  I don’t remember what had prompted her to say that at that time; Kyle might have just had a tantrum, was demanding my help, or she was simply wishing she had a playmate.  I know she didn’t want to wish Kyle away and I know that she loves him with all of her heart.  

I didn’t get angry or upset when she stated her wish but used the book we had read to try to put things into perspective for her.  I said, “Kaylie, I know how you feel; it is tough to have a brother with special needs but let’s pretend for a minute.  What if you were the one born with special needs?  What if Kyle was the one who could talk and play and you couldn’t do the things he could?  Wouldn’t you hope that Kyle would want you as his sister, no matter what?”

I didn’t mean to make her cry.  But she did and her tears were evidence that she understood.  I told her that it was okay to wish Kyle didn’t have special needs but we should never wish he wasn’t part of our family.  I assured her I understood her feelings, that she could talk to me anytime and that it is normal to wish our lives were easier.   

We try to put ourselves in Kyle’s shoes as much as we can because having this mindset helps us to approach frustrating situations with a different perspective.  It’s not always easy, though, and sometimes my feet just don’t seem to fit.  But putting ourselves in Kyle’s shoes not only helps us with the difficult times, but also with looking at the world in a different light.  In Kyle’s shoes, we are not in a hurry, we don’t hold grudges, and we find happiness and delight in ordinary things. 

Present Day: Kaylie is 14 years old now and I’ve witnessed, firsthand, how being a special needs sibling has affected her. We’re currently working on a project together in hopes to use both of our experiences to help other special needs siblings!

Meet Kyle on our YouTube Channel, Kelli & Kyle!