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May 12

Making the impossible happen

So much of Sam’s case is improbable.  Kids don’t get psuedo tumors.  Pseudo tumors are never this aggressive.  They always respond to medication.  The medication never kills off taste buds for months and months.  And perhaps the most challenging at the moment – kids who are legally blind are never completely homeschooled.  They’re always on an IEP, services are paid for by the school system.

Everyone agreed that I had the right to legally homeschool my child.  And everyone agreed that being certified as legally blind means that certain services and technology are provided.  What nobody could figure out was how to make that happen.

Let’s be honest – last year sucked.  It just did, in horrible ways that I don’t think I’ll ever be able to talk about without sobbing.  And the trauma associated with every little bit of it – from the disastrous January/February with the school trauma, and then the horror of the accident, the recovery and the slow descent into blindness… it was just horrific.  And it’s taken months for me to reach the point where I was ready to really fight it again.

In order for him to qualify for the services, I had to put him thru the IEP process, which involved all kinds of testing, a neuro-psych, a FBA, all sorts of other acronym heavy tests that would be hellish for him.  After putting him thru what he went thru, after holding him down for IV’s and spinal taps and anesthesia… my tolerance for forcing him to go thru pain for less that life-saving procedures is non-existent.

So I stopped.  I devoted myself to homeschooling, reading out loud and working with whiteboards and audiobooks.  I focused on therapy, and getting him emotionally healthy, and academically challenged.  I backed off entirely, and took a breath.  Several, in fact.

I just… chilled.  I focused on getting back to normal, on getting the girls settled and secure, on building up his security and emotional health.  On finding curriculum that excited him, and challenged him and made him feel like he was good at this academic stuff.

On Monday, I met with a contact at the Jewish Children and Family Services.  She’s an advocate, who will work with the school system to enforce his IEP.  The IEP that he didn’t have.  The one that everyone said I had to get in order to get him the services he needed.

I came home, and was just so frustrated.  I shouldn’t have to get an IEP in order to get him the services he needs for the disability.  I have a legal right to homeschool my child.  He’s legally entitled to services because he is certified as legally blind.    There has to be a way to make this work.

There is.  I emailed the State head of the MA Commission for the Blind, and she verified that Sam is entitled to services, and nowhere does it say that it’s dependent on his being enrolled in public schools.  And after that, it all happened really quickly.  She referred me to my local contact, and his boss, and they both came out today.  Suddenly, I’ve got a rehabilitation specialist set up to come and meet with Sam and I, to figure out what he needs to make homeschooling easier.  I’ve got a local low-vision doctor who sounds perfect – he’s great with kids, and they’ve set him up with a double appointment, so my doctor-phobic boy can relax and get to know the guy without feeling a ton of pressure to go fast.

It’s like suddenly, I feel like I’ve got a safety net.  I’ve got a team of people working with me to get Sammy what he needs to live an independent and productive life.  It’s not scary and isolating – and I’m not entirely doing this alone.  There are people who actually KNOW how to deal with a legally blind kid.  Know what kind of technology will work for him, and they’ll work with me, WITH HIM, to figure out what he needs and how to make it work.

It’s a whole new world.

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