Wednesday, January 25, 2012

On being different.

The topic of differences surrounds us.

From the time of the first diagnosis 11 years ago and so many after, we've been living different.

We're different from our circle of friends and family. Our kids are different from their peers. Different. Always different. It's come up a lot because now that our daughter is 10, it's becoming all too noticable to her that she is different. We didn't have these struggles with our son, well, because he has never really cared what people thought about him -- a trait that has and will serve him well.

For our girl, though, it's harder. We had a recent conversation when she got into the car after school and it very nearly broke my heart in two. I knew this day would come; the day she knew she was different and it wouldn't be the acceptance of the beauty in differences. 

Not unlike my daughter, I too had to learn to accept my own differences. As a parent to kids with medical, physical, and developmental disabilities, I've spent a lot of time adjusting to the differences that come along with having this life.

I've adjusted my own dreams and made new ones. I've lost friends because of the differences in our family -- I've cut loose friends who were judgemental and I've accepted people into my life for the benefit of the kids. My life morphed into the person who goes with the flow; very different from the person who liked to know what would happen and when.

Having kids with disabilities will do that you know. it'll make you do things, say things you never thought you would. It'll make you stronger, more fragile, more serious, more thankful. It'll make you feel more sadness and experience more joy than our typical peers.

Over the years I've learned that differences aren't all bad. I can only hope my daughter will feel the same way, someday, just a little bit. And I hope that day is sooner, not later. 

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Julia blogs about her family at Kidneys and Eyes and is on Twitter at juliaroberts1. She co-founded Support for Special Needs; a social network for families of kids with special needs. She can be found writing humor (ha!) at Aiming Low and scouring her fridge for the last cold diet coke and selling funny goods at Slice of Crazy Pie.

6 comments:

  1. I think parents like I create a new normal, by shedding those - friends and family - that don't or won't support our version of life, and surround ourselves with others that have this common experience. We as adults create our universe as normal as possible. But for a child, this isn't so easy, especially approaching the middle school years. Middle School kids can be so cruel, even with the smallest of differences. I hope your daughter can be proud of what makes her unique - not different - and teach her peers to celebrate the uniqueness in us all.

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  2. HI Julia -- I just jumped over to your piece about the conversation with your daughter and it was painful and moving and beautiful (funny how those things all roll together in our families eh?)
    What struck me about what your daughter said was how many of the modifications are physically setting her apart from the other kids (e.g. tests in a different room, larger print than what the other kids get).
    I just posted a qualitative study we did on bullying and exclusion of students with cerebral palsy and a common comment from participants was that the accommodations set them apart and made them feel different.:
    http://bloom-parentingkidswithdisabilities.blogspot.com/2012/01/teachers-students-ostracize-disabled.html
    I'm sure a lot of how kids feel about the accommodations has to do with the teacher and how they explain (or don't explain) differences. I'm not sure what the answer is to make sure the child gets the accommodation but not in a way that is perceived as ostracizing. I will ask our researcher about this.
    I think difference is so hard for kids. I know one of the things they found was not helpful in the study was to try to hide your differences. Does your daughter have a simple explanation for why she needs the modifications that she can feel comfortable using with friends?
    Thanks for sharing. Your children are both beautiful!

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  3. I never thought about our "typical peers." Just love this! I find it is also hard to go back and forth - the friends who I knew "before," who I don't want to bombard with autism talk, and the friends I've made through the SN community. I am the same person I was before, and also changed enough to no longer fit.
    I remember feeling like such a misfit when I was 10, and I didn't have any special needs. I was just awkward like any other pre-teen. I can only imagine how difficult it would be for someone who stood out from the crowd. Fortunately, she has you for a mom, so I'm pretty sure she'll be okay :)

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  4. Julia - Great post. I admire you for sharing your honesty here, and I especially love the realization/conclusion at the end!

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  5. Love your post! I've been traveling to elementary schools giving presentations about the value in embracing differences. Not sure it always gets through, but it's worth discussing! We've really got to redefine difference.

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  6. Thanks you all for your support. I know that you know how hard facing differences for our kids can be.
    It is true, our (parents) typical peers are both people in our lives and not. I've certainly lost friends for the differences in our family. I know they are friends not worth having...I hope my daughter will learn that earlier than I did.

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