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Nov 07

I’ve never had a case like this

That’s the theme for Sam, apparently.  And honestly, hearing that about your child is not really something that bodes well for me.

Nine year old boys don’t get pseudo-tumors from a bike accident.  Psuedo tumors don’t NOT get better when on Diamox.  Diamox doesn’t impact taste buds to the point where they just don’t work any more.  And now – kids who are visually impaired don’t get homeschooled.

I talked to the case worker from the MA Commission for the Blind today, and it wasn’t encouraging.  I wasn’t coming at it from a good place, having just re-lived the accident and history with the neuro-opthamologist from Children’s that we’re seeing on Thursday.  I was already a little fragile and emotional, and then had to re-do the whole thing again with the social worker.  Only to hear him say “I’ve never had another case like this.”

He’s the only social worker for children in Central MA for the Commission for the Blind.  And he’s got kids who are on home/hospital, unable to attend school, but still receiving services through the school system.  Still getting an education thru the school system.  There are simply no kids who are homeschooled entirely, while visually impaired.

All the technology is paid for by the school system.  Because he’s not on an IEP, and not receiving services through the school system, there’s no mechanism in place for him to receive the technology. I’m legally allowed to homeschool him, and he’s legally entitled to services though the school system – but we don’t know how to mesh those two things.

There are steps and processes, and plans going forward.  I have to brave the lion, and contact the school system.  My social worker, who’s lovely, is going to do some research too.  We’ll figure it out.  I’m just tired of fighting.  I need someone to look at my boy – my sweet, sweet boy, who struggles so hard and has lost so much, and just HELP him.  Give him what he needs without making him go through all of this.

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