Sunday, February 24, 2013

The Opposite

'If every instinct you have is wrong then the opposite would have to be right'.  What a great episode of Seinfeld.  There are many days in which I think this must apply to motherhood, and especially to mothering a special needs child.  There are some days I think I was born for this, and other days when I wonder how we've managed to make it this far.

I had a day today that made me consider this approach.  The CHARGE Syndrome foundation hosted a feeding webinar.  Although informative, pretty much everything I'm doing with Ronan and eating is wrong.  Sigh.  

Every time I think I have CHARGE figured out, we get thrown a curve ball.  Tonight I got some really great tips concerning oral placement therapy.  For example, Ronan has been grinding his teeth a fair amount.  While some kids will just do this, in a kid with CHARGE it can mean a few things.  It can mean that the muscle that chews is actually weak, and that he's seeking input.  A weak muscle can mean that he doesn't feel safe eating table foods (and even that it isn't safe for him to eat them!)  This is the point where my hand is slapping my forehead for trying to basically force him to eat table foods.  There were probably 3 or 4 more times when I should have been slapping my forehead for doing the opposite of what I should have been doing.

I think that the sensory aspect of CHARGE, while not totally apparent at a young age, may be starting to show itself with Ronan.  We've been noticing a few sensory and integration issues.  He doesn't always like input on his bare feet.  He doesn't like his hands squeezed.  He doesn't like major chunks in his food.  

But, like most life lessons, I'm going to take tonight to feel sorry for myself and have a glass of wine.  Then tomorrow, the chewy sticks are coming out to help Ronan strengthen his jaw.  The brushes are coming out to help him with his touch sensitivities.  We had fallen into a sense of complacency with Ronan.  Major medical issues seemed like they were taken care of.  He seems to be progressing, albeit slowly, from a gross motor standpoint.  I think we need to start "upping our game", so to speak, regarding sensory items.  And all the wonderful tips I heard tonight, we will try to work into Ronan's day...


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