Saturday, August 16, 2014


This has been a long, hard week and I am not in the best of moods.

Monday was Alex's first day of school. He has new staff. A new principal (yeah, I'm heartbroken), a new teacher... we had meetings and get-togethers and conversations where we revisited the same old hot topics we tackled last year. We had everything sort of temporarily settled by the first day of school. He was excited. I was satisfied. sort of. temporarily. He has both of his aides from last year to start with. This is BIG. Getting to this point was exhausting. I was confident in the first day plan and that Alex would be fine so I didn't take him the first morning, I sent him on the bus. With a new bus driver and aide. Alex is supposed to get off of the bus at 3:45-4:00. He wasn't. I figured it was the first day, they'd be late. 4:15 he wasn't here. I eventually got a call from the bus garage, they apologized for taking so long to call me but there was an incident on the bus with a couple of students and staff had to intervene. They needed to take a student home first so they would be late. 4:30. 4:45. I called the bus garage back to get an update, he said they were about 8 minutes away. Several minutes later, he calls back to tell me that the bus was in front of my house, waiting. I looked around me- make sure I'm at the right house, I looked up and down the street- squinting, searching for a bus... oh, shit. "Then they must be at the wrong house because I am standing in front of my house and there is no bus anywhere on my street!" I'm freaking, man. He's an hour late and now they don't even know where he lives! HE'S NONVERBAL! I'm telling you, it was fucking scary. Luckily, the bus was not lost, they just called ahead so I would be ready. My baby came home safe and in one piece. No marks, no bruises, no crying. He had a good day, he only dropped once. This year is looking promising.

Tuesday came and I had to take Alex's grandpa to the VA for an appointment. Let me tell you, I have been in plenty of hospitals but I have never been in one that I was afraid to touch anything. Until this one. We had to go to the basement for his appointment and he left his water in the car. He was desperate so he stopped at the water fountain across from the elevators for a quick drink. He bent down and turned the water on. Next thing I know, he's sputtering and wiping out the inside of his mouth. I'm looking at him like he's lost his mind when he explains, "that's nice. Turn on the water and a cockroach crawls out of the drain." I'm telling you, as soon as I saw it, I did a crazy lady dance, threw my arms in the air, screamed like a little girl, then started cursing. A man walking down the hall looked at me like I was insane, I said, "It's BIG!" He looked over at the water fountain, jumped away and cursed right along with me. That thing was about 3 inches long and an inch to an inch and a half wide! After that, I was checking behind door handles before I opened them and standing in the middle of the floor, watching for an attack. It was awful. Every single patient there has served our country, and they can't even clean up the dirt (seriously. Next time I'll get a picture of the corners of the floor for you. Don't even try to use the restrooms.) or call an exterminator. I wonder if the roaches are crawling on surgical instruments... ew. Alex came home on time, he dropped 8 times and eloped twice. I'm nervous. (8 and 2 are still awesome numbers, but it's higher than my goal.)

Wednesday. I told you about Wednesday. Thursday was the boys' first day of school. Both boys were up and ready by 5:15. Yes, AM. By 5:30, the cuteness of them being so "eager" wore off. I spent the next 3 hours trying to keep the Goofy One clean and wondering how in the hell his teacher was going to survive the day. His meds aren't working and there's nothing I can do about it until the weekend. I worried. All day I waited for emails and phone calls, I checked and double checked frequently... no new email, no missed call. I checked my notification settings, adjusted my volume, changed my ring tones... and didn't get a single one. Goofy brought home a green. I talked to his teacher beforehand and we decided to keep his behavior system the color coded one he's already used to because he's very visual, he already knows the system, and it has an easy/clear goal. She wrote in his planner that he had a really good day. Goofy says different. He says he doesn't like school and he's not going back. He says the neighbor girl tried to push him out of the bus seat, kids called him a moron in music and pushed him at lunch. Awesome. How much is true, how much is lie, how much is misunderstanding?

Friday, thank God for Friday. You'd think, right? Oh, man. Friday, I had to be at work early because there was a 9am appointment that could not be missed. Goofy was pissed. He refused to go to the neighbor's house because it's not fair that I put Alex on the bus and not him. He's just not going. He even tried to fake sick for about a minute. He went. I get to my client's house, the appointment isn't until 1, they remembered it wrong. Then, we had to pick up prescriptions on the way to the appointment, so we had to leave early. I heard my phone ding on 141, but I'm not reading emails or tweets while I'm driving. Going down 55, my phone rings. It's an automated call from Alex's school. Due to "recent events in the media" the school is releasing early. Buses will begin arriving at the school at 12:30. I flipped out.

This week, on top of what I've told you, I've been with Alex's step-mom dealing with the sister's school, talking to Alex's school, Goofy's school, their future school, Walter started Prozac so he's a total bitch (the doctor says it's ok, give it 3 weeks), plus working, plus taking care of the kids and house. It's been busy, I haven't watched the news, I haven't seen what's on Facebook, I haven't read Tweets, I'm completely out of the loop. I heard bits and pieces of what's going on in Ferguson from eavesdropping on passing conversations. The first I really heard was sitting in the ENT waiting room at the VA, listening to the governor and president make speeches and even that was interrupted. "Recent events in the media" geez. They things I thought in those few seconds... quickly followed by panic because I can't get to Alex. I'm working. I have no clue what's going on, what situation he's in, and no way to get to him. Nightmare come true. I'm calling my ex-husband, calling my sons, making a list of who I could possibly call whether they knew how to take care of him or not- I was desperate. I finally got Thing2. He was walking home from work and thought he might be able to beat Alex home. We have another stray and Thing2 was going to call him to see if he could get Alex if Alex got home first. Then Alex's teacher called to get verbal confirmation that someone would get Alex off of the bus. I'm still freaking with no clue what's happening and she says "due to recent events in the media" and "precautionary" and I'm ready to freaking cry. I don't know what's been in the media! I haven't watched TV, I haven't read an article, I've been busy! She says it has to do with Ferguson and I am so relieved. Alex's school district covers 22 school districts in St. Louis County. Including Ferguson.

I get the message that Alex is home with Thing2, safe and sound. I can breathe. We are headed home when my phone rings again. Goofy has a new resource teacher, a new teacher, a new principal... we have had thousands of emails, some of them sarcastic and snarky, but mostly trying to work together (this new principal is going to be fun. :/) and we're going to have a team meeting. She's calling to try to set a date and to see if one of the big guys can be excused if he can't make this meeting. I need one freaking piece of paper from this man, and I really don't know why he'd be coming, it's just a team meeting, but whatever. If he shows up, I'll ask again for the piece of paper, if he doesn't, ok. So, we're talking and I mention that one of my concerns is the way his schedule is arranged. He has OT in the morning (his best medicated time) which tends to get him excited and hyper. He has resource in the afternoon when the meds are wearing off. We're talking about it, and she tells me that both she and the teacher are happy with the current schedule because she gets him after specials, and since it's in the RtI block, he's not missing any instructional time. O.O  He has RtI. He's missing RtI. Then she says something that makes me smile. "he has RtI? But it's not in his IEP."

No, it's not. RtI is a school-wide intervention. RtI is a fluid program, with kids changing tiers and programs frequently with assessments. The IEP is locked in until a new IEP is written by the team. I don't want to have an IEP meeting every six weeks, it's hard enough once a year, but if RtI is in the IEP, they have a legal obligation to follow it as it is written, which completely contradicts the purpose and process of RtI. RtI is separate and does not belong in the IEP.

So now we have a problem. Goofy had:
a 504 with many accommodations,
60 minutes per week of private OT,
30 minutes per day of remedial reading,
and 90 minutes per week of RtI for handwriting (letter formation, grounding letters, letter size, spacing...)
- those interventions did not work.

Now he has:
an IEP with many accommodations,
60 minutes per week of school OT,
30 minutes per day of remedial reading,
120 minutes per week of instruction in written expression (capitalization, punctuation, sentence structure),
and 30 minutes per week of instruction in task related behavior.
- that's not going to work. She said we will discuss it. Monday, August 25 at 12:55pm.

By the time Friday night came around, I crashed. I ended up spending hours on the couch watching Monk while the kids ran wild. Now that I have recovered enough to think or feel, I am in a state of unrest.

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