Ducky Diaries: A little bit different.

Friday, March 1, 2013

A little bit different.

Good day everyone!  Long time no see. 

I unintentionally took a small break from the blog world.   Taking care of a toddler, losing the ability to see my toes and sleep through the night is taking it's toll.  However, I am still here, alive, and barely kicking, because, I can't lift my legs that high anymore.   Yay pregnancy!!!  

Recently it was brought to my attention that for having a 'special needs' blog, I don't write a lot about "special needs".  And that is a very valid and true point, but I don't have a 'special needs' blog.  I have a blog and happen to have a special needs son.   Sometimes, I write about our adventures as a family navigating this sometimes hectic and crazy world of the unknown.  Most of the time, I just babble because it's what I do.  

Our life is just a little bit different than yours.  And our son may be just a little bit different than yours...  Or maybe he's the same or similar.   If you're coming here for answers, I don't have any for you.  That's the sad, yet freeing truth.  

I wish my family could be your hope, and while I seem to think my family is pretty awesome, we aren't one of those magical families whose special child just stands up healed and runs a marathon....

  Having a child with special needs is often an insanely unpredictable winding path through uncertainty.  You make the choice to get out of bed every morning and accept whatever happens. Some days are hard, some are easy. Sometimes you want to give up, sometimes you want to fight.  

The truth is that if I were to write solely based on our day to day life, you would see a very happy child with a strict schedule, because deviating from that schedule could throw our entire day into peril.  My son has Sensory Processing Disorder (.understanding SPD ).   He likes things just so, his atmosphere, the people he knows, his bed, his pajamas, his socks, his food, nap time, bath time, bed time..  We have routines for everything. 

Sometimes things are too loud, sometimes they are not loud enough, sometimes they are too hot, or too cold, sometimes he can be gentle, but not often because he needs to be rough to 'feel' things... Sometimes he touches things he doesn't like and he throws up. When he stands, it's always on his toes, because he cannot handle how things feel on his soles.       

 This is my son when he is in a situation where he's not comfortable.  Hands tightly clenched into fists to keep from touching something unpleasant, that his little nervous system can't handle, smile reserved, almost scared look in his eyes, all while trying to be brave.... 
This is my son in his own familiar setting, hands relaxed, huge smile, relaxed, safe....   This is SPD.

My son also has Hypotonia (learn more about our ragdolls) he has just recently mastered rolling 360s around our living room and slowly moving around in his infant walker.   He's 20 months old.  He still can't sit on his own bottom for longer than 2-3 minutes without toppling, still can't crawl, cruise, or walk... His body doesn't work the way it should even though his mind tells him that he wants to move, which he so desperately does.   

But, he's happy.  So very happy.  And everyone who meets him will tell you they have never seen a happier baby. 

He's our happy quirky boy and we decided a few months ago to post pone our search for 'what's wrong' and just let him be him.  It's working out quite well.  So far. 

He has therapists that come to our house and I have days where I feel like my doors are revolving.  Therapy isn't fun but it's necessary.  Some days I wish we didn't have to do any of this, but we do.

Some days I wish words like "Occupational therapy, speech/language therapy, physical therapy, cognitive delays, gross motor delays,  hypotonia, floppy baby, stabilizing, wing bo, side sitting, braces, compression vest, brushing, compression hold, oral sensory, overstimulated, understimulated and stuffing" weren't part of our vocabulary... 

Or that sentences like this were funny "His batteries are dying in his vibrating toothbrush, they need replaced so we can wake his mouth up."   "He can't feel his food, that's why his fingers are in his mouth."   "He screams after he goes number 2 because having a dirty diaper upsets him." ...

There is so much more, there really is but I digress because I am too lazy to keep typing. And if I can say one thing to other parents of special needs children it's this, if you're looking to blogs to give you hope, don't.   Read them, enjoy them, feel a sense of relief that our lives don't have to be doom and gloom, and yes have the hope, that "hey, that's what my child has and look how awesome they are doing."   but don't drown yourself in them.      

Let your child be themselves and let yourself breathe.  

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