Wherever you go, go with all your heart

DISCLAIMER: This is my first blog post as a member of the From Left to Write Book Club, a group of bloggers that do not write traditional book reviews, but instead use the books as inspiration for blog posts that are about our own experiences.

Have you ever identified with a book character so much that you sometimes use it as a way to describe yourself to other people? If so, whom do you choose?

 I have frequently described myself as Roderick Usher from Edgar Allen Poe’s masterpiece “The Fall of the House of Usher.” No, I haven’t had a house dissolve into a black pool and disappear, nor have I inadvertently buried anyone alive, at least that I am aware of.

But, the description Poe gave of Roderick always resonated with me.  It includes a form of sensory overload  called a “sensory processing disorder” and in Roderick’s case, a defensive sensory processing disorder.

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Like Roderick, I am hyper sensitive to sounds, smells, taste, and tactile stimuli. Sounds that do not bother other people are like fingernails on a chalkboard to me. Normal speaking voices are always too loud. Someone folding a crease in a piece of paper with his fingers will send me fleeing the room. I cannot eat ice cream with a metal spoon because if the cold metal touches my teeth it is physically painful.

Ice Cream With Candy Sprinkles

My entire life I have dealt with these idiosyncrasies and learned quite a few coping mechanisms that get me through the day without looking like a lunatic to my friends and family. Mostly. But, I have suffered the unfair labels of quirky, particular, picky, and even diva (the bad kind) because of some of my coping skills, or lack thereof.

But, why am I writing this blog post?

I am writing it because after 4 years of denial I have come to terms that my son also has a defensive sensory processing disorder.

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For 4 years I told myself that “it was just a phase,” and “he’ll grow out of it.” And, for 4 years I dealt poorly with a situation that could have been made much easier if I had opened my eyes and come to terms with my greatest fear – that my first born child is “his mother’s son.”

Picture 2

(click for source)

Once I came to terms with this idea I was not satisfied with doing nothing.  Suffering from an acute case of “Mama Bear Syndrome” I was convinced there was something I could do to ease his distress and help him acquire the skills he will need to get through this life when everything is turned up to 11. Or 12. Or 18,000.

Most importantly, I do not want him to suffer needlessly or to be sidled with an unfair label for the rest of his life.

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I want him to be healthy and happy.

I know one way to do this is to embrace our shared different-ness and own it instead of trying to hide it (as I have for 30+ years).

I don’t want my son to feel shame about his different-ness as I have.  And, I can provide him help that was not available when I was a child.

Two weeks ago I brought my son to a occupational therapist for an evaluation.

One week ago I was given an evaluation that told me not only what difficulties my son was experiencing, but a plan of action on how to deal with them, with short term and long term goals included.

Our journey begins.

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This post was inspired by the memoir Raising My Rainbow by Lori Duron as she shares her journey raising a gender creative son. Join From Left to Write on September 5 as we discuss Raising My Rainbow.  As a member, I received a copy of the book for review purposes.

http://raisingmyrainbow.com/

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17 thoughts on “Wherever you go, go with all your heart

  1. I find sensory issues/disorders fascinating, probably because I’ve always related to some degree. I’m a Supertaster (my family called me “picky”) and I recently learned that my eyes let in 60% more light than the average person’s – which explains why I’ve always had trouble with bright lights (especially LEDs).

    Best of luck to you and your son in learning how to manage SPD – he is lucky to have a mom who understands.

    I promise I won’t do any origami around you if we ever meet up. =)

  2. That picture of your son just melts my heart! He is precious! Having a plan of action for your son is no doubt a major relief. You are a great testimony to the fact that one can be very successful in life and in compensating/overcoming physical & emotional challenges. Onward and upward, as they say!

  3. Pingback: Book Club Day: Raising My Rainbow by Lori Duron

  4. I don’t think I’ve ever heard of SPD, so thank you for writing about it! Your son is blessed to have a mother who understands so well.I hope that you are able to find treatments and therapies to make his life a little bit easier than it was for you.

  5. Good luck! Hopefully he is young enough for “coping strategies” to become his normal and he won’t know any different as he gets older. How lucky he is to have a Mother who truly understands what he is, and will be, going through.

  6. The little fella is adorable! It’s great that you have identified this difficulty so early in his life, with the understanding and support which comes from that, I’m sure he’ll do well. I have a neice with Asperger’s, which unfortunately was not diagnosed until she was in her teens and struggling with so many aspects of life. She shares many of those features with you both. We know, and we”ve always encouraged her to believe, that she is very special. She is now a thriving and beautiful young adult, much loved by all who know her. I wish the same success for your lovely boy.

  7. Kudos to you for taking action on behalf of your son. My son also has Sensory Processing Disorder. He is a mix of being defensive and sensory seeking. OT is excellent!

    I see that your son wears glasses. Has he ever seen a developmental optometrist (different from the run of the mill optometrist)? The difference is that they evaluate how well eyes process information. My son’s vision is 20/20, but because his brain has some trouble processing the information that comes in through his eyes, he had trouble with a few things. Vision therapy through the developmental optometrist helped a lot with it.

    Best of luck with everything. Once you get a good sensory diet established, it can help a lot. And who knows what benefits you might reap for yourself! You can learn some techniques to help desensitize your mouth.

    And I love that quote you started off with. It’s one of my favorite, and I recently learned it’s from Buddah.

  8. My son also has SPD. So far, we are coping fairly well. I just read “The Fall of the House of Usher,” and I told my Professor that I was wanting to write a paper linking the two. He approved my proposal to write this paper for my end of term paper. After writing a couple of pages, I haphazardly typed my topic into the search engine. Wallah, to my surprise, not only did something about SPD show up, but your post linking the two. (I guess my thoughts aren’t so original after all…LOL) Thank you! Good Luck!!!

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