June 8, 2011

SPD, Sensory Integration, the LONG HAUL to competent Therapy and Parental Guilt

Da Creature has a GOOD OT now.  Of course, that means driving three & a half hours each way to get to her and doing all of his daily work at home, but I am so deeply grateful that I finally found someone who would actually address the sensory issues that I don't care about me anymore.

We had to buy a car to do this.  That was traumatic in itself.  Now we have a car loan, too, which my Dave Ramsey nature really abhors, but we needed it NOW, not in two years when it would have been done right.

So, we drive.  We do exercises.  We do sensory tasks,  We push and pull and work with da Creature.  He's doing so well at the work.  We know what a spin board and a BOSU ball and bean bucket do.  We know better than to listen to anyone who says "What you need is a pressure vest.  That'll about do it.  That's gonna be the best you can do for him."  NO.  If you are hearing that, keep looking.  They are wrong.  Just wrong.  Lazy and wrong.

His balance is finally improving, but it's taking a LOT of life to get us there.  I have every hope that his ability to write and listen will improve too as we go through the ILS work we will be doing.  The increasingly well equipped therapy room which has replaced my living room will be our touchstone to a better world.

So, now we work.  HARD.  No more luxuries like eating out when we're exhausted because now we have to mind the car payments.  No more lazy summer mornings.  The marathon is ON.  We have eight weeks to get him as ready as we can to take on second grade where the school system has just given up on everyone.  Special education seems to have taken the biggest hit in the budget cuts.  Thanks, Haley Barbour, you're such a gentleman and a compassionate leader.  <dripping lethal poisonous sarcasm>

I can't even get the district to give us an appointment for their crappy OT/Sensory integration "independent" evaluation which was written in to the IEP over the district advisors bloody corpse in May.  My advocate sends emails, they ignore her, and the routine goes on.  They are not going to help us, this much has become crystal clear to me.  It's up to me and my beautiful brilliant daughter and da Creature.  Failure is no longer on my list of things to mindlessly accept.

Should I have started this two years ago?  Probably.  But I trusted the district then, believed they knew what they were doing and would help us find therapy and people that would be good for showing us how to help da Creature.  I could not have been more wrong.  So, I feel guilty every time we are shown a new way to really make progress and can't help but look at the lost time as my fault.  Can we still rescue him from his brain?  Yes.  Would have it been better had we started sooner?  Yes.  My heart aches for him, and I hate myself most days.  What can be redeemed will be, though.  That much I can promise him.

No comments:

Post a Comment