Thursday, 14 March 2013

From delay to disorder to disability

We have been in our journey for more than five years now. In the beginning we were always told that Sunny was just delayed and that he might close the gap to his peers some day. But as the years pass by the gap is widening instead of closing. And nobody talks about closing the gap anymore.

Instead, the term "developmental disorder" is more frequently used now and also the term "disability" is being brought up more and more. It shows me that this thing we are in is something that is going to stay and that it will not eventually and miraculously dissolve like fog in the sun. Although I wish it did.

I used to be offended when somebody asked me about Sunny's "disability". I would always correct the person and say "he does not have a disability, he is just delayed". I really had a hard time hearing the word "disability" in connection with my son (and I still do). But while the gap widened more and more and while reality caught up on us I grew into this special needs world as well. I had time to get accustomed to the facts. To accept things as a given. To let go of my expectations. To see the reality we are in as it is getting clearer day by day. And, therefore, I started to talk about his disability now and then, too. I am still using the term "developmental delay" most of the time, but I also sometimes say that he has a disability. And while I still do not like that term and it is still not easy for me to talk about it, sometimes and in certain situations it feels more appropriate. And sometimes it emphasises our need for a different treatment, one that helps us better.

I try not to close my eyes from the facts and my heart knows that I have to start living with this new word in our life, one that will stick with us in the years to come. This word leads me to another world other than that of developmental delay, one where I felt home in a way because I had time to settle in there. It was a place that still opened up possibilities in any direction. But I feel that I have to leave this safe world as time moves on, and go to a new world of uncharted territory. The world I still have to get used to and where I will have to find a new kind of home in.


8 comments:

  1. my heart is breaking for you this morning. i have a fear in the back of my mind, all of the time, that one day patty's progress will slow or stop. and, with DD, even the doctor can't tell you if and when that might happen. something i've always told myself in our journey is that, no matter what else happens, i am beyond blessed to have a happy, healthy child.

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    1. Thanks Misty! xo
      I totally agree with you on this: I am eternally grateful that Sunny is such a happy child, too! Every time someone asks me what I like most about him I always say that it is his sunny personality despite all the things he has already been through!

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  2. Oh Joy. Boo was finally given her disability status (I say that like we were waiting to finally win the lottery.). For me it was different, I have always known that Boo was disabled. It is getting family & friends to stop believing she will catch-up. To what I ask, being a mean teen-ager? I would rather have her sweet Boo. I know it is hard, so hard, to hear that your son will now have a classification first in some people's mind. Those who see disability before his smile.

    But that's what you are for, because even though he might not 'catch up' you will continue to make him grow. Keep up the good work!

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    1. That's the point, the word disability comes with so much prejudice and this is what I fear.
      Thank you for your beautiful comment! xo

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  3. We had a diagnosis early on, but of an entirely unique condition ~ no path to follow, so we're kind of writing our own rules! I recognise that resistance to the language, I've been there. As Kerri (above) says ~ some people check the labels first, but we know our kids are amazing, and delayed doesn't mean never, it means ... it means ... maybe...in time...we'll see...

    It was hard for us to see Smiler's younger siblings skating past him in their development ~ but as time passed, and that gap grew wider and wider, leaving him miles behind, we kind of turned off that mental clock we had for him ~ now I honestly don't see him as delayed, or even disabled ~ he's just himself. He's eleven ~ it took that long ~ but the pain does lessen in time, and I'm certain that those cheeky smiles are the best medicine.
    It's okay ~ you're going to be alright.
    Take care
    Lucas

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    1. Thank you so much for your wonderful and encouraging comment, Lucas! You are so right, our kids are amazing and their infections smiles outweigh so much!

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  4. Aw. I red this one on my phone when you posted it (can't comment on my phone). I have a really hard time with the term disability, too. It's just so hard. I think your attitude is just perfect though and that seeing Sunny and his sunny smiles is what makes it all okay. I wish for all of us that we weren't even dealing with learning all of the terms in this world but at the same time, that would mean our kids would be different and they're each so perfect, sweet and amazing.
    Huge hugs and love!
    XOXOO

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    1. Thanks huge Kristi for your comment! I love the second last line of it, it really hit home! Hugs to you!

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