Sometimes, things get a litte too real.
As some of you know, who read my blogs or know me closely, my daughter was diagnosed with PDD (Pervasive Development Disorder) this past year. While after several misdiagnosis and failed attempts to pinpoint her developmental delay, I welcomed this "label" as it opened up a lot of doors for us with what services our insurance would provide. The developmental pediatrician who diagnosed Samantha explained clearly that she was on the Autism spectrum but at only 2 he wasn't ready to place a lifelong label on her just yet. I didn't care. I finally had somewhere to start, something to research, and a clear direction for helping my little girl. Even if it was just a notation on her records in order to get her some help. I would have called her a Martian to get her help at that point.
I cannot begin to list all of the wonderful support I have received from my closest friends, not just for Samantha directly, but for myself as a mother struggling to understand and accept what has been handed to me. We began all of the necessary services, therapists, interventionists, etc. etc. etc. Samantha has shown many signs of progress, yet still displays great delays.
Last night I attended my 1st Autism support group meeting. While there I borrowed a book many have suggested I read. Now I am not a fan of celebrities cashing in on their name in order to sell a book deal about how they have it so hard. I usually skip over any book penned by a celeb as just another way to put my buck in their pocket. However Jenny McCarthy's book Louder than Words sat in front of me on the shelf and for whatever reason, I took it.
For those who don't know, unless it's a history book on the English Monarchy, I rarely finish any book in less than 6 months to a year. I just am not a leisure reader. However, I have had this book less than one full day and am almost done with it. Every page I read is like a light coming .. wandering through months of darkness, hands outstretched, and feeling for any sign of progress. While her son suffered seizures and my daughter does not, all of the "quirks" she saw in her young child and brushed off as genius, innovative, and above age level are the very same I myself notice in Sam everyday. While reading this gets harder with each page as the realization of reality sinks in for me, I continue to turn the page almost as if for validation that what I have been scared of and suspecting is in fact truth.
His behaviors, speech patterns, social interactions, playtime behaviors, routines, all of it….it's like someone watched my child from a hole in the wall and wrote down her very existence! It's both comforting and terrifying to read. I'm not alone, but also this is very real. Now what to do about it? My 1st step is to finish this book, and then get another, and another. A doctor once told me that most disorders are 1st diagnosed by a proactive parent before a physician will ever notice it and suggest further evaluation. That's how I have got this far. I guess I just have much further to go than I thought.
Today, again, I feel overwhelmed. I feel lost, unsure, and so saddened by all of this. I know that part is my cross to bear and I will do it as best I can for my child. She need never know what a struggle this is for me. She need only be assured that I am always fighting to help her be the beautiful spirit she truly is.
So to my friends, and my family, please be patient with me if I seem distant, distracted, or uninterested. Just as I may cling to some of you in a more demanding way than usual or need you more than you might want. Either way, I am sorry, and ask for nothing more than some compassion.
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