Wednesday, July 17, 2013

Siblings: An Update

I've been meaning to provide a sibling update for awhile. It was a year ago that I wrote about the challenges faced by the sibling of the child with special needs.

I don't know too much how other people choose to broach the topic of special needs with their other children. For our family it is a topic we decided not to address at all, at least for the time being. It was quite an unconscious decision at first - after all, Calvin was only two and a half when Juliana was born and there wasn't much point in trying to explain anything. But as the years have passed this has become more of a conscious choice. Why should I point out any of Juliana's differences? Calvin sees her purely - for who she really is. Why should I say anything to change that?

So I have not spoken to him about special needs or developmental delays. We've never told him that she has Kabuki syndrome. It's not that we hide this information, and he most certainly has overhead our conversations. But I have not gone out of my way to provide information. Calvin is too young to really remember life before Juliana was born, and that means he is also too young to remember a life before we spent hours each week running between therapy and doctor visits.

Recently Calvin and I were playing a role-reversal game and I asked him why we went to therapy. "We go to therapy so that Juliana can learn how to walk and talk" he said. Then I asked (and remember here that I am playing Calvin) "Why don't I go to therapy too?" I have often wondered what he thinks about some of the slightly older kids we see in therapy. Calvin responded "You do go to therapy, you stay with me!" So there you have it: no need to over explain things to young children.

However as Calvin is approaching his fifth birthday I've been realizing that soon things will change. He wants to know why Juliana is doing a specific activity and I have to tell him "that's because her eyes aren't straight." He wants to know why Juliana has to have blood drawn and I have to tell him "it's because she's a little bit sick." We recently had her fitted for SMOs and I explained to him that these would help her learn to walk. Again, I am keeping it simple and I'm trying not to burden him with too much information.

I feel very strongly that there has been an orchestrated plan in the birth order and the personalities of my children. I don't think I could have possibly asked for a better big brother for Juliana. He puts up with a lot: long hours in waiting rooms and a younger sister who often has demanded much attention. Despite that he is very kind to her, very patient with her, and he loves her dearly. It took a really long time for her to reciprocate those feelings. I felt like I was holding my breath: was there even going to be any sibling relationship? And then it happened and it happened beautifully. They like to play together, they like to be together, and they have very, very few negative interactions. Calvin is a great helper and he loves to show her how to do things. He is often very helpful in this regard when I am trying to do various therapeutic activities with Juliana.

At dinner tonight Calvin called across the table "Juliana, I love you!" I guess we're doing something right.


  1. My little granddaughter was recently fitted with SureStep braces and she's made rapid progress since.

  2. We are just now getting questions from both Noah and Isabella about Kabuki Syndrome, and I think it's only because we are attending the Kabuki gatherings...I think they both know Isabella needs more help with various things, but to them, it's totally normal. For Noah, going along to Isabella's therapy is just as routine for him as reading a book before bed. He doesn't seemed bothered by it at all... I hope and truly believe that he (and eventually our youngest daughter too) will learn empathy, patience, and respect by being a sibling to a special needs child purely by being present in our daily life and all that goes along with Isabella's ks.

    The final picture of Calvin and Juliana made me tear up. It's really, breathtakingly beautiful.

  3. Wow that is a great story my granddaughter and the baby are about same age as your kids i am so concerned of how we handle as time goes but what you did seems to have worked out would like to talk to you some time

  4. Wow that is a great story my granddaughter and the baby are about same age as your kids i am so concerned of how we handle as time goes but what you did seems to have worked out would like to talk to you some time