Saturday, June 13, 2015

I pulled Goofy out of summer school.

I made a big mistake with him this school year. He's been having a lot of trouble since we moved, mostly on the bus and at home. I considered transportation as a related service, I told you about it a while back, I'm not sure if you remember.  I mentioned it to the school and was told no. I was told that there wasn't enough documentation of incidents to show a problem. I asked for documentation and it didn't happen so I decided to do it myself. Every day the Goofy Child came home with a story from the bus, I sent an e-mail to document it... until the assistant principal figured out a way to fix that. Email can only be counted as documentation with proof that the email was read- which would be a response. He stopped responding. I ran into him in the hall and asked if he read my email, planning to write his response in my communication log. He said no. That's it. just no. So, ok, fine, I see how we're playing this. My life is a mess, my kids are a mess, my home is a mess, and we're doing everything we can to just survive so standing in the hall, looking at him, I'd had it. Fuck it, fuck him, I don't fucking care, I don't have time for this. I gave up on school. The kid was only going to be there for another few months and his next school sounds like they are a little easier to work with. We stopped homework, I stopped looking in his backpack, I stopped the extra work. I gave up.

Looking in his backpack at the end of the year, I missed a lot. I missed his MVP award and the jersey we were supposed to decorate. I missed the movie day at the high school that I was supposed to sign the permission slip for- he didn't get to go. I missed his week as student of the week and all of the activities I was supposed to help him with. Looking at everything I missed, I can see why his counselor is saying Goofy is desperate for my attention, and I feel horrible.

He was supposed to go to summer school. He needs all of the help he can get and he doesn't qualify for ESY. I signed him up, I talked with the summer school principal. It was planned. I sent him for one week. With fewer kids going, and fewer needing transportation, the schools are all put on one bus route, that means Walter rode the bus home with him. I finally had someone who could tell me exactly what was happening on the bus. Walter begs me not to make him ride the bus. He says those kids are horrible, Goofy's bully is a little jerk, and Goofy keeps getting in trouble- he won't listen. Goofy is enough of a problem that he's sitting in the front seats. Do you think I've heard a word of it from the school or seen any kind of documentation? Not at all. I'm irritated, and this month I really don't have time to argue his existing IEP, accommodations that we agreed on, or adding transportation as a related service. I just can't. So I gave up. I called the principal and I told her, I don't have time right now and I'm just not doing it. He won't be back. I give up.

The difference is this time I'm not giving up on Goofy. We need this time together. We need to work on us. This summer I am learning to enjoy my children again, learning to play with them, remembering why I think they are so wonderful. Since I pulled him from summer school last week, we have been more relaxed, fighting less, cooperating more, and our routines are getting done.  Goofy has been more willing to be the "big" kid and take on more responsibility. He helps me clean the house, helps with my errands, he helps me with his brother and his niece. He talks to me more about things that interest him, he laughs more, he spends time with me. He is amazing, and hilarious.

He's decided that swordfish are a real threat. They have swords on their face and they can stab you with them and you will die. He laid out a pretty convincing argument on why he needs to have a weapon with him at all times... I didn't have the heart to tell him that he probably won't run into a swordfish in Missouri. There is, however, a possum that likes to potty in our yard and a groundhog/squirrel team that likes to bait cars up the road. They could be as dangerous as a swordfish, I'm sure. He's learned to figure out how many guns he can buy with his birthday money. I knew his rockstar math skills would come in handy some day. He now has two new guns and a bow with arrows to keep me safe from invading swordfish. My hero.

We're doing good, we're getting to where we need to be. And the summer school principal is his assistant principal for next year. She is aware that I want an IEP meeting at the beginning of the school year, and she is aware that this time I'm not giving up. Right now, I need to work on us but I'll be ready to fight for him when school starts.

"Janitorial Work" for SN students- I call bullshit, too.

I ran into my aunt at the gas station today. I haven't seen her in a while and we've had a lot of changes. She asked me how things were going, and things are going great! Walter is on the football team this year, Alex is loving his school, and Goofy...well, two out of three ain't bad. My job is flexible, I'm the president of Alex's PTO, and trying to help out with the football parent organization. We've adjusted to the move, we've graduated from family counseling, and Goofy is rocking the individual counseling. sort of. It's busy, but life is good. We were talking about Alex's school, he goes to Mapaville State School- one of Missouri's 35 schools for the severely disabled. For Alex, it's the Least Restrictive Environment. She was excited that he is loving it and asked if the school was helping him. It threw me for a minute... right into that dark place of "progress." Is he making any measurable progress? Will he ever? She caught where I went and redirected the conversation to how wonderful it is that he loves his school. and it is.

Tonight, I read a post called I Call Bullshit. I tried to explain to my boyfriend why I am so upset, but I started crying so hard I couldn't get the words out, so I came to tell you.

The writer is upset that special education students are doing what they call "janitorial work", and the school calls "life skills."

First, she says (I say she, I don't know. I'm guessing and don't care enough to find out.) that she knows plenty of neurotypical kids who don't know how to use a washing machine, wipe off a table, mop a floor, change their sheets, pick up wet towels from their bedroom floors, and clean up after themselves... and she wants to know if we are worried about our neurotypical kids not having these life skills. I call bullshit. Not doing it is not the same as not knowing how. I've had plenty of teenagers, I know laziness. Alex isn't lazy, he doesn't know how.

Secondly, I agree with her second bullshit. We do need to put more effort into making the "whole school experience" more accessible. I have plans. We're working on them.

Third comes work experience. She's offended that it may be implied that all our kids can do is menial work, janitorial work. I totally understand the offense, I have a cousin who's principal told my aunt that he would never amount to anything, the best he could ever do was janitorial work. That didn't go over well, my aunt was (rightfully) furious, and in the end, my cousin is fucking awesome. He's a wonderful husband, a great father, and he provides very well for his family. I get it. I do. But what about the other kids? The ones who take pride in their menial jobs because look how far they've come! Right now, at this point, as he is... Alex can't even get into a sheltered workshop, much less get a "real job." He has to have a certain level of mastery in life skills to qualify. Things like using the bathroom, managing his clothing, behaving in a way that he is not a danger to himself or others, following directions, having the ability to perform a menial task... like rip a piece of paper, apply a label, mop a floor, make a bed, wash a dish...

Along the same lines... where do you think these neurotypical teenagers learned to be "patronizing, condescending, and overzealous"? How many times have you given your child an exaggerated "good job!" and an overzealous high five for something like using their words, using their fork, eating one more bite, picking up one toy...? I call bullshit. You call it "patronizing, condescending, and overzealous" but they are imitating what they see us and the students' staff doing to congratulate our kids on something well done. Isn't that the way we were taught to do it? If it looks wrong, maybe we should work on fixing what we do, work on being a better example of what we want to see.

As for peers being entitled assholes? I call bullshit on that, too. That's all in how they were raised, they will continue as adults what they see respected adults do. It's not the fault of our kids.

As for the son of the writer, I respect his concern. She is raising a caring and considerate child, however, my son has an Individualized Education Plan that is based on his unique needs. It's good to talk about justice and injustice and to want to step in when something just seems wrong, but it's just as important to talk about differences. Not everyone is the same, not everyone works on the same goals, and that's ok. Just because it's different doesn't mean it's wrong.

Then I hit the comment section because I'm not feeling exceptionally bright at 2 am. "Parents need to refuse these activities for their kids. I have." I'm sorry, have we met? Do you even know my son's name? I don't believe I saw your name on the attendance sheet at his last IEP meeting... If you don't know my son, if you are not a member of his team, you don't get a say in what he needs or what I need to do for him. He's my son, I know his needs. I fought for life skills because those are the skills that he will need to survive without me.

I hope one day Alex will be wiping the tables of his school cafeteria or mopping the floor, hearing someone tell him that he is doing a good job. I hope one day he becomes a janitor. I will proudly post a picture on Facebook and say, "Look how far he's come!"