Sunday, December 16, 2012

Tangled Emotions

On Facebook, the prompt is now, "What's on your mind?"

As I sit here, staring at what the school is telling me is a behavior plan, but which says nothing about what anyone will do if Joey melts down in school again- a high likelihood come the spring; as I think about the day Joey stepped out in front of a garbage truck, and what game plan I have in my head should there be a repeat (and all the echoes of people saying 'why can't you get over that already?'- with words, eyes, and quiet shakes of the head), and think about those beautiful lives lost in Connecticut this week (not just the kids, but also those teachers and admin who gave everything for those kids), I think about... this. I think about the possibilities of where we could be going, if I can't get the school program to function. I think about the needs Joey has, and the possible avenues he could take, especially if we can't get the depression in hand and the frustration under wraps.

What's on my mind? The other day, when Joey imagined that one his grandfathers died. The pain he felt, as if really had happened- and the breakdown he had in school over his inability to cope with raw emotion... even in an imaginary circumstance. That's on my mind.

The long road ahead to get the school to understand that inclusion isn't working for Joey. He's being lost- socially, academically, he's drowning. The little progress he makes still leaves him lagging behind at an alarming rate- even as he steps forward, he is falling farther and farther behind. We've never recovered from our major third grade regression. I have to make sure I have every scrap of paper in order, ready to go. I'm not doing this one alone. How am I going to pay a lawyer? No clue. But it must be done. That's on my mind.

Having to admit to myself that inclusion isn't working for Joey. Sitting here thinking about it, I could just cry. We want him to be able to function in the world. We had been doing really well with it. But then third grade came, and it was sold to us as "well, things are different." Guess what? In middle school, they are different again. To have to sit here and say, "This environment is not supportive enough. He isn't safe there." I don't think many people understand how hard that is. What makes it harder is knowing those kids are at least used to him. There is some social value to having those kids learn beside Joey. There is also the future to think of- Joey's social future, after being pulled out of school. That's on my mind.

It's a tangle- the kind that steals your sleep and leaves a hollow in your chest.


Susan Gurry said...

This is a real challenge, and believe me, it is not easy for an educator to say that to a parent. (I am a DIR/floortime Therapist for kids on the spectrum). As the children grow, often their social skills or slower learning profile reduces the time spent in inclusion. And the social skills gaps become larger...and by 6th grade, when middle schoolers want to hang out with people who dress, talk and eat just like them, it is even more challenging.

I just hope you have a good team with whom you can talk and discuss options. And good supports among your parent friends!

mommy~dearest said...

My heart goes out to you, mommabear. I am following in the very same footsteps. Sitting here typing this brings tears to my eyes, because it is so friggin difficult when these things come slamming us in the face. Reality checks hurt. I felt this way when I made the decision to medicate as well. It sucks. But we will get through it. We have to remember that it's the course that is changing, not our kids. I just felt a lot more secure in that thought a few years ago than I do now. I'm rambling....but I want you to know that you are not alone. Hugs to you and Joey!

Katie said...

I am so sorry you are going through this. I hear you from the other side - the teacher's side, when I have had students who I believe are no longer safely (forget about academically, just purely safely) served in my setting (not many, but 2 that I recall very clearly over the years) - and my administration refuses to hear or acknowledge it. I can't begin to imagine what it must be like from a parent's perspective.

I believe that unfortunately getting a lawyer is your best (only) option. I would suggest contacting Kennedy Krieger and seeing if they have resources they can direct you too - lawyers who do pro brono or sliding scale work. If you have a more local source (Joey's OT center?) they may have some resources as well, but KK is likely to have the largest and strongest connections.

Thinking of you.