Monday, August 5, 2013


My chickadees

My friend Michelle Wolf wrote a great piece today over in Jewish Journal, highlighting a terrific blog called Sibs' Journey: Broadening the Narrative. Here's what the three young college students have to say about their summer project:

We are three college students embarking on a cross country journey this summer to learn more about what it is like to be a sibling of someone with special needs.  We plan to interview siblings of individuals with several types of developmental disabilities.  The age range of  interviewees and diagnoses of their siblings will vary.  On our journey around the United States, we hope to collect more information and narratives about how living with a sibling who is neurologically atypical (e.g., having autism, Down’s Syndrome, or any other type of intellectual disability) affects the social and emotional development of the sibling.

I've been lying on my bed in a laundry and post-having-to-give-Sophie-rectal valium-haze, reading these posts and have alternately smiled and cried through nearly all of them. This section really got to me, of course. Here's an excerpt from Our Greatest Cheerleaders:

In an effort to make sure our views are completely clear, we want to provide a page that focuses on how incredibly passionate, strong, brave, selfless people our parents are. Though this blog puts a strong emphasis on a sibling’s role in a family, we in no way want to denote the merits of which we commend our parents.
There's also this, written by Claire, a sophomore at Princeton and one of the trio who author the blog:

Then, slowly but surely, I started to discover other people who were also playing the role of the “normal” sib. These people “got me” more than even my most well-meaning friends. They allowed me to have a space where I could freely talk about how I felt about my family and specifically my relationship with my brother. As I have gotten older, I have become more and more interested in what we as sibs have in common. I started to see the potential for a new narrative about disability, coming not from parents or doctors or psychologists but from sibs like us. 
It's important reading and watching (videos included), and I hope that you all will do so!

Thank you, Ellie, Renee and Claire. What beautiful, intelligent and strong women you are.


  1. And once again, you offer us a chance at some sort of enlightenment. Thank-you.

  2. Thank you for posting this. I love your blog and your current perspective, but Im always extra-intrigued when you share a glimpse of your beautiful children when they were younger. My special boy is 4 now and the sibs are 6, 6, and 9.

  3. Thanks for sharing these wonderful voices. I wonder what the sibling camp was that was mentioned in one post? Camp Sunshine maybe? Sounds a lot like it.

  4. And the way Henry is holding Sophie ... Awesome. His love for her--and you--shines.

  5. wow, what an amazing project by amazing young adults! how do you find out about this stuff?

    that picture is beyond precious :)

  6. Oh -- I'm thrilled to hear this! Especially because a study was just published in Pediatrics suggesting increased behavioural/emotional problems in sibs -- but it didn't quite ring true to me.

    Thank you for sharing. I will check it out!

  7. the photograph makes my eyes well up...golly. such love.

  8. Most importantly, we had that exact same Exersaucer.

  9. What a lovely labor of love. Thank you for sharing it. I posted it on my FB page so it won't be missed.



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