Tuesday, March 29, 2011

If I had a quarter...

I wish I had a quarter for every time someone has called my sensational child a brat, I’d be rich and none of us would be worrying about how to pay the out of pocket expenses for our multiple therapies, medications, appointments etc.

When our daughter, Shelby, was given her alphabet soup (this is what my husband uses to refer to her multiple diagnoses, SPD to be one of them) I used to think that the reason people didn’t understand about Sensory Processing Disorder was simply because no one knew anything about it,that  it was rare and uncommon…especially in our neck of the woods. This was in 2009. A lot had changed since 2009 in the areas of SPD and ASD.

I set out on  a mission to learn as much as I could about SPD and share it was as many people as I could. I have been able to learn a lot thanks to the amazing authors, therapists, and other families with sensational children. I feel like I am ‘doing my part’ in educating the world about the uniqueness that is my daughter and the thousands of children like her. I felt like a success.

With this feeling also comes the feeling of failure because the people who should understand my daughter the most…don’t.  Our families, very few of our family members have taken the time to listen to what my husband and I have tried to tell them about Sensory Processing Disorder, in fact most of them would be funding our therapies if I in fact did receive a quarter for every time someone called her a brat, or told me “If you’d just spank her, she’d fly right”.

It is our families that cause her the most anxiety… the people in this world who should love her the most and accept her for the awesome miracle that she is, are the ones who understand her the least and are the first to call her a ‘brat’ and some very special family members have even gone so far to use the “r” word (at a family function in front of her and our other children mind you).  It is these people who should be the ones supporting us in this excursion of life that cause us all the most pain.

But my amazing miracle of a little girl hasn’t let that get her down. In the 2 years since she received her diagnoses and began therapy she has met the goals that we have set for her and often flew right on by what we have expected of her. She has slowly climbed out of the dark hole that she was falling into and has once again returned to the amazing blue eyed happy girl (most days) who smiles and communicates with us all.She has come from babbling words that no one could understand, even us as her parents, to talking your ear of and making complete sense.  She will now initiate a conversation with a stranger (probably not the safest choice, but it’s better than the screaming that used to happen when a stranger would look at her). She has gone from missing at least one day a week of school because of the lack of support and understanding of the teachers to this year looking forward to school every day, and in fact cries on no school days (THIS IS HUGE).

But these struggles do not define her… anyone who meets Shelby leaves with a smile on their face…even if she is having an off day…. She is an amazing sensational child and I am so lucky that I was chosen to be her mom… and I thank my stars every single day for her and her amazing siblings…

People often comment on if she will ever be ‘fixed’… and as most of us know, she isn’t broken, but I can tell you she has fixed me for the better.

1 comment:

  1. Great post Kristin. I think so many of us could write similar entries with some family member or another mentioned. All we can do is love our children, be their cheerleader and advocate for them.

    You are doing a great job with all your kiddos.