Tuesday, 21 August 2012

Am I Going to Keep Mourning What Isn't?

I've been keeping things fairly light here. I've stayed away from blogging about anything too deep or emotional. A specific post that I read recently, on a blog that I follow, got me thinking. The post was from, The Fragile X Files and it was entitled, Comparing Apples to Apples. The post is about one of the inevitable pitfalls of parenting - comparing your kids to other kids.

When it comes to children with special needs, the act of comparing is a slippery slope. The adage that children develop at their own pace is no longer a relevant excuse for missed milestones,

"...there's a standard by which children are expected to have reached certain milestones. How else would they come up with what is standard and typical, without comparing?  How else could they determine who is developmentally delayed?

The author speaks of comparing her twin boys (both of whom have Fragile X Syndrome) to typical children:

"...as a parent of children with developmental delays for several years now, you'd think I'd be better at not comparing them to other kids..."

She goes on to say that comparing her boys to children within the Fragile X community is often more challenging for her because it means that she is comparing 'apples to apples'. Those more severely affected by the syndrome (like her boys) stand out from those who are only mildly affected.

After reading the post, I decided to leave a comment for her. Here is part of what I said: 

My son doesn't have a diagnosis - other than the catchall 'global developmental delay.' I spend my time wishing I could find other kids like him so that I could compare apples to apples. He is non-verbal and it's hard to compare him to kids that can verbalize their wants and needs, their likes and dislikes.

I could have written more, but instead of filling the comment box, I decided to write my thoughts here.

Like The Fragile X Files author, I don't spend a lot of time comparing my son to typical eight year old boys. Carter is so far removed from where he should be developmentally that I try hard not to go there too often, and when I do, it's never for for very long. 

I have, on several occasions, compared him to other children with special needs though. I even wrote about it a few years ago on Bloom

Back then I was comparing him to the kids in his horseback riding group. Lately, I've been comparing him to his teammates on his Challenge League soccer team.

I compare and I wonder, if I could snap my fingers and magically change things, would I trade Carter's inability to speak for a different disability? Would I rather he be challenged with a physical disability but be able to call my name? Would I rather he have behaviour issues but function at a higher level cognitively?

I don't have the answers to those questions. Nor do I need to come up with answers, because I won't ever be able to magically change the fact that my son is non-verbal and has a cognitive disability.

In the end it comes back to a question The Fragile X Files author asks, All throughout his life, am I going to keep mourning what isn't?

Someone else left a comment in response to her post,

Mourn, move on, enjoy the positive moments, then cycle through it again.

Sometimes that's all we can do.

12 comments:

  1. Stacy, I am so glad you wrote about something personal. I love the light and funny posts, because sometimes our lives are simply light and funny (my most recent example would be this week's post: http://www.todaysparent.com/blogs/special-needs-parenting/do-your-kids-enjoy-family-attractions)

    But sometimes the heavy stuff, the personal stuff, the things that are the most uncomfortable to put on paper are the things that most need to be said. Kudos on this post.

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    1. Thanks, Anchel. I think we, as parents, have to give ourselves permission every once in a while to tell it like it is and admit that we're only human - we do compare our kids, we do mourn what isn't. But, we also move on from there and enjoy all the positive things our kids have to offer.

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  2. Beautiful post! I love reading you write like this.

    I try to remember what someone told me (or I read), which was: "Comparison is the thief of joy." In everything!

    Of course it's not always easy to remember.

    I think comparisons are thinking traps that lead us into overanalyzing/overthinking things which at the end of the day are irrelevant, because it's not what life has given us. We probably obsessed over other comparisons before we had our kids -- but about ourselves and other people.

    I love the pic of Carter above. I love the way Carter is always happy to see me and always has a joke to share. Hope to see you around HB sometime in the near future (well, at least on October 9!)

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    1. That's a great quote - and so true. I will definitely have to remember it in future. Thanks so much for your comment, Louise. I'm looking forward to seeing you in October, if not sooner!

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  3. Thank you for sharing this. It's hard to leave 'normal' behind when your life is so far from it & you cannot connect to typical folks (ie hours in treatments & medical care). I obviously live a 'halfpastnormal' life, and still consider myself fortunate compared to some.

    I think other folks said it about comparisons - they can be the thief of joy.

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    1. Angela,
      We are *definitely* very fortunate compared to some. As I mentioned in a comment above, we, as parents, are only human and we can't help but feel certain emotions when it comes to our children (whether they have special needs or not). Nor can we predict when those emotions will surface or what will trigger them. So, we acknowledge the emotion(s) and (hopefully) move on to focus on the positive - some days that's easy enough, while other days it can be more challenging.
      Thanks for the comment.

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  4. Stacey, I think this cycle you are talking about is very normal. How many parents have I met in my job (and in my circle of family and friends)that have said all of the same things? What I love about you is that you complete the cycle and do find the positives. That is what you show all of your kids, and especially Carter. You teach him how to make the best of his life. Ironic that this is the post I came to when leaving you this:

    I re-nominated you for the Versatile Blogger award because I wanted to highlight the great stuff you're doing here to my followers. So complete your cycle and read what I wrote about you! http://avision4rkids.com . You're a great mentor.

    Keep doing what you're doing. I'll be sending you the parents of my students in a few weeks! :)

    Have a great weekend!
    Ida Mae

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    1. Thank you so much, Ida Mae. Your words are very kind. I do hope that it came through in my post that I try to focus on the positive.

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  5. Beautiful post. Beautiful boy. He is exactly what God intended him to be...and thus perfect!

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  6. I am so proud of you my friend...what a beautiful post. I ask myself the same question all the time. And it's hard not to make comparisons...but I think the trick is to not dwell there. As we've always discussed...our children are beautiful and amazing human beings...and we have to learn to celebrate all of the small victories.
    You are an amazing woman. Keep up your awesome work.

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    1. Thank you, my friend! Definitely celebrating the small victories - helps to have friends like you to celebrate with.

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