Wednesday, May 19, 2010

My changing role

In the past 24 months, I have gone from the parent of a newly-diagnosed child with SPD, dealt with the grief that accompanies diagnosis, fought for a view of my child's future that wasn't overwhelmingly marked with her "disability", yanked myself kicking and screaming into a very restrictive diet for her, learned everything I could learn about her issues, questioned myself, questioned everything I knew about parenthood, and questioned some more. I have stood tall while people around me judged my child for her behaviors. I have silently screamed at the grocery store while my child bounced around the store like a ping-pong ball--wildly raging out of control. And I have experienced FAPE, IEPs, and a million other acronym-laden experiences firsthand. I have even glared down a lofty doctor (or two...or three) that deemed themselves "superior" in children and how they behave and why. I have smiled patiently without "losing it" at a few school employees and/or family and friends that were skeptical early on in our journey. I have studied for hours about vitamin and mineral supplements, and their effects on the body.  I've even paid for naturopathic treatments that almost made voodoo sound logical. I now understand the full effects of "malabsorption" and not only on the body, but on the developing brain and how SPD can be the result or the side effect. I have banged my head against the wall, cried, vented, and been tested beyond what I honestly knew I could withstand. And during the entire 24 months, I was still a mother to three other children, and wife, and owner/operator of a very demanding financially-based business in the middle of a recession for which, simply put, my profession was, partially blamed for causing.

So....Gosh Darn It.......if there is anyone out there that wonders why my landscaping looks crappy in front of my house or has any other comments about my short-comings......I've been just a tad BUSY! (Great big "raspberry" straight at ya!!!)

With that off my chest, I can't help feeling like my role is changing. Jennica has gained an amazing amount of ground. Does she still have sensory issues? Absolutely! But she is learning to manage her response to overwhelming sensory input! Two years ago, she could barely handle something so relatively mundane as the sensory input of walking down the school hallway with a class of children. She's still on her restrictive diet. But we recently ran out of pro-biotics and found out that they truly are important when she complained of stomach aches. We started them back up and after about four days, she's fine!!!  If she has to be on pro-biotics for healthy digestion the rest of her life??? No big deal! She still has "issues" with crowded gymnasiums, but its improving and she lets us know, in acceptable ways, when she needs to leave. She still has "issues" with correctly identifying body clues such as cold, hot, hunger, thirst. But that is also improving. She no longer just lies on the ground and screams in frustration, unable to "organize" her brain into formulating the cause and solution to her problem. She usually tells us first!!! And we have time to help her locate the source of the discomfort and correct it before it is unmanageable. She has friends! She is academically "typical". Her language, fine and gross motor skills, etc. are all "typical". role is changing. I'm beginning to speak about SPD from "the other side." There are so many parents and children either entering the trenches, or stuck in the trenches (for years) without a clear path on how to get out. Or stuck on a clear path that just isn't working, but with no resources to find a different approach. There are so many theories, and every day they change. Do you listen to the anti-vaccine paths? Do you try to naturopathic methods? Do you identify yourselves with the autism community? Do you try OT or Dr. Greenspan's methods (floor-time)? What about traditional medicine? Do you fight with your school? When do you "go with your gut" and when do you try something that feels wrong because you have nothing left to lose?

I'm finding that I want to be the face of hope to all the people who are still fighting at the height of their battle!!! I want to give the encouragement to keep fighting! Don't give up! Your journey will not mirror mine! I can tell you what has worked and is working for us, but that is no guarantee that it will work for you or your child. The important part is to keep going!

For now....Let the photo of Jennica be the face of hope for SPD! Keep her smiling face in your mind and have faith that you can help your child reach the same point in their climb. She's beginning to take so much joy from the simple things in life. Finally! And the parents that are living this battle know what I'm talking about when I brings tears to my eyes to watch her laugh in the hallways with her friends while the noise and chaos surrounds her at the end of recess. The simplicity of a normal child at play. Don't let SPD take it away! Keep fighting!!!

Drop me an email. I'd love to share your journey!

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