SPD Awareness Month Guest Post - SpectrummyMummy

I hope you all know that October is Sensory Processing Disorder Awareness Month - you do, right?  I've been slacking this month posting everything I should, but when I saw this post from the talented Spectrummy Mummy on the 'awareness' that she has gotten from raising children with sensory issues, I knew I had to share it here!

Luckily for me she agreed to let me repost it (you might have read it on the SPDBN too).  So a special thanks to SpectrummyMummy who you can find blogging not only on the SPDBN, but on her own blog "Spectrummy Mummy" and of course on Twitter under, you guessed it, @spectrummymummy as well as Facebook.


Please show some love by leaving her a comment!


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To celebrate SPD Awareness Month this October, here are a few things that I’m now aware of, thanks to my children and their sensory issues.

My entire education was a complete waste of time.  Because if the teachers taught me that there were only five senses, who knows what other lies they slipped in there?

A mess is to me is tactile heaven to my girl.  Sometimes the carpet just has to be a casualty of war in the battle of the senses.  And be assured, it is a battle- I have the scars to prove it.

The bed has a different bounce to the trampoline and the bouncy castle, and that is why the kids just won’t stop bouncing on it. Ever.

A fistful of my hair is the source of all comfort.  It can soothe and solace like no other material on Earth.  A solitary stray hair on his hand, however, will send Cubby straight to a meltdown, even from the same source.  Even if it worked its way loose by his grabbing fistfuls for comfort.  I may take to wearing a shower cap during daylight hours, I’m sure I could work that look.

There are times that raising children with differences makes you feel terribly lonely.  To that, I say: get on Twitter.  There are more of us out there than you can shake a pop-tube at.  With so many of us, there is no need for anyone to ever feel alone.

It Will Get Better

This post has been published all over the place - first on the SPD Foundation's blog, then on Mamapedia, and now it is available in my new book, Sensational Journeys.

I am coming back to it today, because as life has it's ups and downs, in every single way (not just with our kids, but with ourselves), it seems that a gentle reminder is always valuable.

It Will Get Better

Before I ever got a diagnosis of any sort for my son Gabriel, I think everyone I knew had told me some version of the line, “It will get better”. I knew they all meant well, but I wasn’t dealing with your run-of-the-mill toddler tantrums with Gabe. Not even close. My son had meltdowns. Big, long, scary and excruciatingly loud, meltdowns. Gabe would cry for hours on end, for no apparent reason and crashed into walls for fun; this wasn’t typical development in my book, and I couldn’t understand why people were so quick to dismiss it with any of the old standbys (“He’s just a boy” or “He’ll grow out of it” or the non-committal, “It will get better”). How could people think that it would just get better? I wanted to believe them, I really wanted to, but I had lived with the ‘out of sync’ behavior for years, with no sign of it letting up, so I wasn’t convinced that my son would just magically ‘get better’ one day.

When Gabriel’s diagnosis came in at age 4 as Sensory Processing Disorder, I was so relieved that I finally knew what was going on, that I steamed forward – full speed – through OT and implementing a sensory diet at home and school without so much as taking a breath. If that was what my son needed then that was what I would do for him. After all, this is what would finally make things ‘get better’, right?

But you know what? It wasn’t easy and it didn’t just ‘get better’ as quickly as I was hoping. I was tired of being told by family, friends and therapists that things would ‘get better’. Did these people really understand what I went through every single day? Did they understand how upset my son was over the smallest things? How hard school was for him? How hard having play dates was? How difficult it appeared for him to enjoy the simplest pleasures of being a child? If things were really going to get better, could they PLEASE hurry?

Happiness

The often elusive, but always sought after concept:  Happiness.

Websters says that Happiness is defined as a: a state of well-being and contentment: joy. b : a pleasurable or satisfying experience.

That seems so incredibly oversimplified.  Is that even a good definition?  Yes, my boys love semantics, but let’s face it – so do I.  So….

I don’t think of ‘happiness’ as a state of ‘contentment’.  I might actually argue that happiness and contentment are at odds with each other.  Where happiness says ‘this is awesome’ contentment says ‘this will do’.  Then there is ‘joy’, which seems to be better suited to ‘elation’ than ‘happiness’, and ‘pleasurable’ seems to imply something physical, not emotional. 

So I am struggling with the idea of happiness these days. 

Oh, did I give you the wrong idea?  It isn’t a lack of happiness that has me questioning the concept, and delving into this random existentialist conversation about an intangible ideal, it is the opposite:  I’m happy.  Gabe is happy.  Nick is happy.  Matt is happy.

And somehow that’s kind of confusing.

When I think about happiness it conjures thoughts of my sons, my life, my marriage, and of course, the future.  Because when anyone asks you what you want for your kids, the answer is ‘happiness’.  When my husband and I agreed to be divorced, it was, essentially, because we weren't ‘happy’. 

How can so many things be so precariously balanced on a single abstract concept?

I’ve always thought about my sons' happiness.  Ok, maybe not in a present tense, but definitely in a future tense – I want them to have whatever it is out of life that makes them happy.  Truly, completely, happy.

But I never spent any time thinking about my own future.  My own happiness.  Was I living what I wanted for their lives?  Would they watch my example of how to live a 'happy' life, and be able to emulate it?  Simply: No.  But that changed when I separated.  I was forced to confront those ideals, and build around my own happiness.