Wednesday, March 18, 2009

To Tell or Not to Tell

When Brennan was born and we learned of his diagnosis, I wanted to share this news with his siblings right away. It was weighing so heavily on my mind that I couldn't imagine not telling them. Eric felt that we should let the kids get to know and love their new baby brother before discussing Down syndrome with them. After much discussion, I agreed with Eric. At the same time, we also agreed we would be open with our discussions about Brennan around the house and in front of the kids. If they asked, great - we would take that as a sign they were ready to know the details. Jenna is an especially inquisitive little girl who is FULL of questions ("why is the sky blue" is the tip of the iceberg with her). If Jenna hears a word she doesn't understand, she will almost always ask its meaning to put it in context of a conversation (even if the conversation is not with her!). The kids must have heard the words Down syndrome 10 times a day in those first few months....but they never asked what it meant. I thought that involving them with the initial EI evaluation and the physical therapist visits at our house would certainly illicit some questions....but it did not.

When Brennan was 6 months old, I was dicussing the lack of the lack of inquiries from the kids with my dear friend Amy. She gently suggested that it was probably time for me to discuss it with them. Although we discuss Down syndrome openly at our house, she thought the kids may feel like they can't ask us about it and it might be better to be more direct. At about the same time, Eric and I both felt that Jenna knew there might be something unique about her brother. It showed in her daily interactions with Brennan and the love she showered on him. When another child remarked to her at the playground that her "brother is small," she instinctively responded "well...I like him small." What a great big sister.

My friend Amy also suggested that I make sure they know that they can always talk to us about Brennan and that we will answer any questions they have with complete honesty. Soon after, I talked to them about Brennan and Down syndrome. I talked to Jenna first. I explained that it would take longer for Brennan to learn things, that he would need extra help - like that from the physical therapist - but also that he would learn to crawl, walk, talk. She nodded, then went on to the next question "so, what are we going to do today?" I asked if she understood what I had just told her and she said that she did. Since I "opened the door", she has taken the initiative and asked more specific question about Brennan and Down syndrome. I am happy to answer them as she learns in her own way what Down syndrome means for Brennan, our family and her role as a big sister. I later had the same conversation with Tanner, to which he responded simply "I know" - like he had always known, which I think he may have. I'll have the same conversation with Parker soon, but I don't think he's old enough to understand quite yet.

In the end, I am glad that we let the kids get to know and love their brother before discussing his diagnosis with them. It may not be the right approach for everyone, but it was the right approach for us.

This weekend I am attending a workshop presented by Dr. Brian Skotko called "What the Other Children Without Down Syndrome are Thinking: Lessons from Brothers and Sisters." I hope this workshop will provide information that will help me understand what my other kids may be feeling and provide suggestions on the best way to help them with these feelings.

As a side note, there are two children's books that we received as baby gifts that I think are great. The first one is Ruby in Her Own Time. It is not about Down syndrome specifically, but discusses in a very sweet way how we all learn to do things in our own time. The other book, My Friend Isabelle, is about two friends, one of whom has Down syndrome. It describes the many things they do - some they do the same and some they do differently and makes the point that "differences are what make the world so great." I would highly recommend both of these books - for kids with and without siblings with special needs.

1 comment:

Monica @ Monkey Musings said...

I LOVE My Friend Isabelle. It's so simple and sweet, but is so positive that my (almost) 4 year old loves to have me tell it over and over.