January 4, 2012

I have known this was coming. January 2012 was the target date.

Next Wednesday I begin the longest long shot I have ever taken in our lives. Our chances at success are slim at best but worth taking anyways.

Three years ago we abruptly pulled Luc out of our home school district. It was a horrible event for him. When you are in Special Education and in public education, at least in New York State you are at the mercy of the district. For a few years we were at our “home school”, the elementary school near our house, like the rest of the kids on the street. Then they decided to restructure. Schools in New York State were trying to own their own special education, rather than hand it over to BOCES as they should have.

It was more money for the school.

For the next two years Luc was put through hell and we were trapped.

I think that there are wonderful and talented special education teachers out there. We had one that had been in special ed for over 30 years. She had experience, intuition and she cared. The problem was this…… she was so driven by what her principal told her she could and could not do that it ruined her capabilities. For example…… when the principal told me that their special ed kids followed the exact same curriculum as the mainstream children did, I stopped her.

Why? I wanted to know. We were in special ed because these kids couldn’t remain on the same curriculum. New York State… was always the answer.

It was a system set up to fail. The first thing that was removed was recess.

So they took ten 8 year old boys and reprimanded them when they wouldn’t sit all day.

You didn’t need to have a child in special education to know that wouldn’t work.

I was in the principal’s office on a daily basis. The calls would typically come at 11am. My favorite call was this: “Luc received a ticket today for not stopping at the stop sign on the wall.” I remember putting down the phone and looking around. There was a camera here, I was sure of it. A stop sign? On a wall? And that was teaching kids what? To stop at every stop sign like there was in the real world?

Oh wait, there isn’t. This wasn’t the real world.

Bottom line for me was this: the special education teachers in our district were controlled by curriculum and by people who thought they knew best. Had they allowed those teachers to teach the way they knew they could, we would never had a problem there. Add in a few minutes of movement for these kids and you would have boys who sat still. Or relatively still. They are boys.

To make a very long and dramatic story short we pulled Luc out of the district one day in March. The principal threatened to take me to court for failing to send my child to school. I invited her to. I told her I would fund the whole lawsuit. That ended right there.

Fast forward to BOCES. My whole life I believed this is where the bad kids go. Our trusty principal told us this was where the bad kids go, this is where Luc belonged. Reluctantly I took the tour with him, and the first thing that happened was this…. a wonderful young man was walking down the hall carrying a SpongeBob book. He walked up to Luc, held out his hand and said “Hi, my name is Anthony. Do you like SpongeBob?” and thus began a wonderful friendship, Luc’s first real friend in the world.

Through the years at BOCES Luc has blossomed. His classes were far apart in the building giving him the opportunity to move throughout the day. They had movement components to classes. They went to shop class and operated drill presses (when I relayed that to his old principle she was floored. He didn’t hurt anyone? Exact words). He joined the chorus, his academics started to come together.

“He’s the mayor of the school.” His OT teacher told us this fall. The teachers at BOCES in my opinion are allowed to be who they need to be, they are allowed to teach to the kids not to a curriculum.

The school goes on past 5th grade but the dynamics of the school change a little bit. The problem with all of this spectrum stuff is that he’s just high enough on it that he can fall through the cracks now. In his mainstream activities I see the reactions to him…. he’s that kid who is nice and cool but there is something just a little bit off about him. But no one can ever pinpoint it.

The problem with that? It could easily lend to bullying in mainstream world.

And he’s in mainstream world. He’s in Tae Kwon Do (testing for his second set of yellow belt tips this weekend!!!!), all of his activities are with “regular” kids (what a terrible word to use, but we have nothing to explain it with better). We’ve put him in situations that have challenged him to rise to the occasion, and he has.

The question now becomes….. what do we do about 6th grade?

Two options: we move back to our school district into the middle school. Of course not the one that’s close to our house where the rest of the kids on the street go. We go to a different one, but one that has a special ed classroom run by BOCES. Luc would be supported in there and gradually join the mainstream kids for classes as we determined. For example he might go to mainstream math and come back for BOCES English. I am okay with that. I think that will transition him nicely.

Option Two: The Norman Howard School. This is the long shot leap of faith option.

This is  a wonderful school right here in Henrietta. It’s a private school that caters to those with learning disabilities and really is creative in how these kids are taught. Its reputation is amazing, the kids who come out of there are successful. There are educational requirements we have to meet, which I believe we do, and our advisors do as well.

The problem is the tuition. It’s 25K per year. We make too much to qualify for assistance yet not enough to actually afford it. Sure we could take out loans but add that up over 6 years with college on the horizon and I am setting myself up for bankruptcy.

If I can prove that our school district can’t meet his needs, then the school district has to cover the tuition. Which is exactly what is happening at BOCES.

I understand about the tuition. I understand that we will probably not be able to pull it off.  But I am going to take the chance anyway. Next Wednesday I go and begin the process. It’s a longshot at best. Luc might not even qualify to go there, but if I don’t try I will always wonder.

As an experienced special ed mom I know how to work with the system. I am a big believer in working with our Committee of Special Education. I was taught at an early age how to handle people, and how to positively fight for things I believe in. I have never been nor will I ever be the parent who screams and threatens. I believe these teachers and aides and everyone involved truly does the best they can in a challenging field. They are dictated by so many things out of their control. It’s been my experience to work with and not against these experts, because they really want to help. We are in an imperfect system and we have to do the best we can. Sure we can see how we think things should be handled our way and with our child, but we have to step back and look at the big picture. We have to look at all the kids and then we have to get individual. I play the deck I am given and I play it well.

And I will do the same thing with this adventure. We will give it our best shot. If we hit it we hit it. If we don’t we don’t We have two options to work with. If Norman Howard doesn’t work out we go back to the Sylvan Learning Center, which around here is run by the wildly talented Stern family.

So there are ways to support him and ensure he is successful as a student. While we were once told that he would never graduate high school, he has plans for college and a career, and he’s just 11.

I think the key to any child is allowing their true talents to shine through and building on them. Luc’s talents are that he’s social, he’s compassionate, and he’s got a memory like no one else. (So good that I routinely rely on him to remember the grocery list and where my keys are). It’s not about what I want him to go or be, it’s what his natural talents lead him to. Whatever he does in life he will be successful and he will be proud of what he does. Our job as his parents is to guide him to become a good man.

He’s overcome so much throughout these past few years. BOCES allowed him to be in an environment where he felt successful. Therefore he was succesful. I am not a proponent of not keeping score, I am not a fan of everyone wins. But he’s been in enough situations where he has failed and told he’s not good enough that he was due a few years of success. Those years were dark for him. Very dark. He knows how to handle both sides of that coin now. He knows that falling means you get back up.

He’s got a lot of people pulling for him too. That’s for sure.

So here we go. Like I said it’s a longshot at best. Our chances are slim to none. But if there is one thing I know about myself and about this life I lead….. if there is one sliver of possibility that shines through that door that is almost shut, I am going to seize it. So seize it I will. I might not make the jump across this valley, I might fall right in the center.

But I am going to jump anyway.






  1. Mary, I read your blog all the time and don’t always have time to comment. Today, I just want to say fight the fight for Luc.
    Longshots pay off bigtime. I applaud your efforts and hope that everything turns out in his favor!
    Best wishes

  2. And I for one am behind it. I am going to pass your blog on to my cousin who is going through this.

  3. I’ve been following a friend of mine’s blog in California for many years now. I stumbled upon it quite by accident when she was going through a tough time with her autistic child. Her struggles with the school system sound eerily similar to yours. There are tears, struggles, sleepless nights, wringing of hands, worrying, down right fears, but in the end, it is all worth it.

    I made a decision 10 years ago to send all of my kids to private school, even if it meant leaving me without a cent. That’s why my wife drives a 10 year old SUV and I drive a skate on wheels. Wouldn’t trade it for the world.

    Good luck!

  4. Mary, I know that the right thing will happen for Luc, whatever that is. We are actually looking into a charter school in Syracuse for Ryan when he goes to 6th grade. Please keep us posted!!

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