Day #115 – What’s the Point?

So what does all of that sensory stuff mean? Again, a review of the ‘major’ sensory posts.

Vestibular – Movement & Balance

• Day #49 – Give Them Recess!
• Day #50 – Overcoming Fear to Trust
• Day #51 – Goosfraba

Proprioceptive – Position of Body & Strength of Effort

• Day #55 – Field Testing Proprioception
• Day #56 – Elephant on the Stairs

Auditory – Sound

• Day #69 – Fans and Furnaces
• Day #70 – Rattle and Hum

Tactile – Touch

• Day #84 – Dear Michael Jordan
• Day #85 – Lovebug Bliss
• Day #86 – Buttons, Zippers, and Snaps…Oh My!

Oral – Taste

• Day #98 – Crunchy House
• Day #99 – Mustard Cheeks

Olfactory – Smell

• Day #109 – Scratch ‘n Sniff
• Day #110 – Smokin’ ‘n Whiskey Drinkin’

Visual – Sight

• Day #111 – My Eyes, My Eyes!
• Day #112 – Lifelong Learning

Interoceptive – Functioning of Internal Structure(s)

• Day #113 – The Greatest Treasure?  Knowledge.

Well…it all means a lot.  Go back to Carol Kranowitz, the author of The Out of Sync Child – that is what I had to do.  For the most part I had to read, reread, reread, and focus on the following three tenants:

1. The child with sensory dysfunction does not necessarily exhibit every characteristic.

So, much like the spectrum itself – no child is alike?  How in the world can we possibly help these children/adults?

2. Sometimes the child will show characteristics of a dysfunction one day but not the next.

Oh well, that’s helpful. Pshhhaawww…seriously.  I thought with more information came more confidence.

Yes and no. But, each day has come with more understanding.  Each week I was able to pay attention and conenct the dots.  If A, B, C are present – then X will happen.  If it’s just A and B – then we’re good.  It’s like the greatest mystery ever.   Yep, not so much – more information provided more confusion.

3. The child may be both hypersensitive and hyposensitive. For instance, the child may be extremely sensitive to light touch, jerking away from a soft pat on the shoulder, while being rather indifferent to the deep pain of an inoculation.

So…then…I’m just screwed?  Neither side is ‘working well?’

Yes and no.

This is the very reason I write.  It didn’t used to make any sense -but the more experience I have, the more patient I became with Tucker, the more I talked to others, the more I researched – the more it all made sense.  All of it.

I’m not going to lie – I still have “WTF” moments – but they are few and far between.

This is the major reason I write – not only to tell our story but to help families that are in the midst of it and others that are just beginning their spectrum journey.  It makes a difference and we must talk about it.  About a week ago I had my first ‘I don’t feel like writing’ moment – pretty good considering I was 100 days in.

My husband said to me, “Think about how much help reading your blog would have helped you ten years ago.  Get in there and write.  I’ll bring you a snack and a fountain Diet Pepsi.”  I’ll do just about anything for a fountain Diet Pepsi.  Yes, I know it’s bad for me – but I really don’t have any other vices, so leave me alone.

The result?  I just stared at him. I couldn’t even fathom…so on those days when I lose the energy to write – I will think about my 28 year old self.

The self that faked confidence.  The self that faked that ‘everything was okay and in control.’  The self that forced smiles.  The self that cried in bathrooms and closets.  The self that would go on a drive just to scream.  The self that was so overcome with frustration and emotion that she would vomit behind the house.  The self that couldn’t bring herself to actually say the word autism.  The self that really had no clue.

But, also the self that loved this little boy to the ends of the earth. The type of love that makes you gasp in pain and cry in joy.  That type of love is all-consuming…a mother’s love.

I would tell her that it’s okay to…

• Fake it until you make it.
• Keep forcing the smile, because it will eventually come back naturally.
• It’s okay to cry – in public too – and especially in front of your friends and family – but never in front of your child.
• Say it.  Say it loud.  SAY IT.

My son has autism.  Yes, he does.  It is not disabled – he is perfectly, differently abled. 

So…here we go…remember those checklists on the days listed above?  That’s where we go now.  How we deal, how we cope, changes we have made, what works, what isn’t worth the fight, how far we’ve come, how far we have yet to go…

It’s real and it begins now through this mother’s eyes.