Things are piling up

It's been a while since I posted. It's been a difficult month.

Ds had a meltdown at school on Wednesday. A bad one. He threw things, and they said he got a pair of scissors within a few inches of a friend's face! (Ds denies this vehemently.) They said he threw a water bottle down, he threw a snack at his teacher, he threw a pencil at his friend (he ducked), and another at his friend's chair. (Ds denies this as well.)

I was at a loss, listening to all this. This was in a phone call, during my lunch hour, on Wednesday. They also informed me that he had a melt down the day before, though not quite so bad. (No one called me about that one.) He hasn't been having any problems at home at all. I had an inkling that there had been that meltdown on Tuesday, though I didn't know it had been bad, only that he had gotten upset. He mentioned having a headache, and that clued me in to asking more questions, and I knew he got upset about something, but couldn't get details out of him. He said he didn't remember. He looked so confused, that I didn't doubt his lack of memory. He did suddenly burst into tears, claiming that "Nothing has gone right in February." Huh?? He'd had a great month, from what I knew of. He was excited about being able to come home right after school, since Dh & I were working shorter hours. And Dh had bought him a new fishing pole, a real grown up fishing pole, just like Dad's, and they were really enjoying practice casting across my family room. He was happy all the time. Where did this come from, that February was so awful??? He also mentioned that his friend wouldn't play football with him, I think it was at recess. My first suspicion was that perhaps Ds had gotten upset while playing football and this caused his friend to not want to play with him anymore. Ds said no. He didn't understand why. Hm. There could be more to that story, I suspected.

Then this all happened the next day. I started to get the idea that his unhappiness with February was school related. The social worker said he'd had a meltdown, and wondered if anything was going on at home. No, we weren't aware of any problems, though the night before he had indicated that he was upset about not playing football, and that he was strangely upset about things going wrong in February.

The teacher gave me the rundown about him throwing pencils and scissors. Sheesh - where was this all coming from?? She indicated that he'd been moody, short tempered, aggressive, for a couple weeks! Dh and I hadn't seen this at all. He was pretty happy at home.

Then his principal got on the phone and asked if the meds had changed. No, nothing different. She expressed concern that there needed to be consequences for his actions. None of this would be tolerated in Junior High when he gets there, and if we don't start exposing him to some of the consequences for his actions now, he would be in culture shock when he arrived at Jr. High. She also told me that he hadn't been playing with his friends at all. That's a real regression. She was unaware of anything related to football, and said that the kids weren't really playing football right now because of the time of year and the weather. She would keep an eye out for that though, and inform the rest of the staff that this seems to be one of the keys to his latest aggression. She shocked me by telling me that DS wasn't getting shunned by the other students, to her knowledge, but she did see that he was completely closing everyone else off at recess and lunch. He didn't socialize at all. This was his doing, not the other kids. That worried me, since this is a bad regression, and a red flag went up that it was signaling something was badly amiss.

I also told her that I keep hearing about this particular boy in Ds' class that continually harasses Ds, and she wasn't aware of it, but said she wasn't surprised that his name would come up. She said he does get into similar trouble in class, and this fits. I suggested separating the two. I said I didn't know if this kid was truly pestering Ds as described (I hear about him DAILY), that Ds could be over-reacting if he's over stimulated or frustrated and just not able to tolerate this kid, but I said he seemed to perceive this kid as a real problem, and it might not hurt to just move him to a different table and put some space between them. The principal said that if DS' perception IS his reality, so if he thinks this is a problem, it is a problem. She agreed that moving them apart might be in order. (Thank goodness. I don't know if the kid is really doing anything wrong, or if Ds just has a personality clash with him or something, but I'll be very glad that they'll at least consider putting space between them. One less frustration could be HUGE.) The principal wants to call in the Autism Team. Oh good. That sounds like it might really help.

None of this stuff made sense to me. Ds was doing well at home, and was making progress with independence and control. He was always cheerful, and was learning to make small talk when visiting MIL in the nursing home. (He only goes maybe once a week, maybe less. Always on a weekend, when it doesn't cut into his rituals.) How is it that at school he was short tempered, aggressive, uncooperative, and explosive? He was also regressing socially there. Something is going on there. He's overwhelmed by something. This just doesn't fit with what we're seeing at home.

So that was bad enough. I had a long talk with Ds, and he was going to try to have a good day on Thursday. He seemed very subdued. I had questioned him about why all this was going on, and he didn't remember any of the really bad stuff at all. Denied up and down that it happened. He said he threw some stuff down, but nothing AT anybody. Even when I told him several adults were telling me the same story, he was completely baffled, and said it didn't happen. I believe he doesn't remember this. He was just too confused.

Thursday was a good day. A really good day! His aide even called me to tell me just how good it was. Thank Heavens. I was very sick with a cold or flu bug, and really wasn't up for more bad news, so this really cheered me.

Friday was not good. I had been so sick, I came home from work Thursday morning, and by Friday I was much worse. The fever climbed, and my throat was killing me. Ds walked in from school, and I could tell from his face that he'd been crying. Uh oh. He fed the dog and went into the bathroom, and then the principal called. This was not good news at all. Ds had gotten upset in the middle of the spelling test. Huh?? He knew those words backwards and forwards. For the past couple days, he hadn't missed a single word in practice. Why would he flip out during a spelling test??? He's good at this! He loves these tests! What would upset him there? The principal had no explanation. However, DS refused to leave the room when he melted, and they had to come restrain him and remove him. They took him to the principal's office, but said they didn't hold him there, just let him calm down. He was crying, but not exploding in the office. Shit. Restraint is only going to worsen the problems. He's going to lose all trust, if he had any left at all.

We were scheduled to be at the school for a fundraiser Friday night. I was sick as a dog, and so was Dh. We both stayed home from work, both of us sleeping all day. The principal knew we were both sick, and wanted to know if we intended on just dropping off Ds at school that night? Because they would understand if we wanted to keep him home. Sheesh. They were afraid I'd just drop him off, after a meltdown, and leave him and them to fend for themselves?? I assured her that if Ds was up to going, I would be with him. And if he wasn't up to going, I would keep him home. She seemed relieved to hear that. She said she thought he needed his mom. Yeah, no kidding. After being grabbed and dragged out of the room, he needs his mom all right. Thank God they INFORMED me of this restraint.

Ds was still very upset at home. He complained that his arms stung. Poor thing. I knew right off that he wasn't going anywhere that night, and I told him so. He was glad. He's been nothing like the child that school describes. He's been helping me, and even cooked dinner Thursday night. He was very proud of it, too. He thought it was the best mostaccioli he'd ever eaten. I thought it was pretty darned good myself, and the fact that I didn't have to cook it made it taste even better, lol. He also helped with cleaning off the table and setting the table and stuff like that. Saturday, he even cleared all his stuff out of the family room, WITHOUT BEING ASKED!! Wooohoo!!

Again, all this stuff at school seems like they are talking about a different child. What is it about that place, or the environment, or the routine, or whatever, that sets him off? Is it the noise level? The activity? The stress? Is it just that school? Or would it be any school?

When I questioned Ds about the spelling meltdown, he couldn't explain it. He said that he was confused, over and over again, because he didn't know where to go. He had come back from speech therapy, and the class was taking their spelling test. This is not unusual, and he's dealt with that before. They had to take him somewhere else for the test. He expressed concern, because his aide was suddenly not there. He couldn't tell me where she went, and he got all flustered. He said the paper they gave him to write on had no lines! And this seemed like a big deal to him. But he didn't know where to go. No one told him. He was confused, and worried. Then with the unlined paper on top of it, one thing piled up on top of another, and he didn't know what happened. He couldn't remember much of it. He didn't know what upset him so much. (Was that it? A missing aide, unsure where to go or what to do, different routine, different paper?) He was getting too agitated to question any further in depth. I guess this is as close to an answer as I'm going to get. I don't think it was any one thing that set him off. Just a bunch of little things that added up to be the last straw on the camel's back. Kaboom.

And while all this is going on, MIL is now being cut off financially from Medicare and the insurance company. So from now on, no insurance, no financial assistance. It costs approximately $200 a day to keep her in the nursing home as she recovers. They can't pay that for very long, not long enough for her to be able to walk or care for herself. She's still very weak. She can't walk. Mostly bed ridden or at least wheelchair bound. She has only stood for a matter of seconds, and took one step, once. The feeding tube has been turned down, and now off, to see if she can maintain eating on her own. It was turned off last week. So that's it.

FIL wants to bring her home. HUH??? How he expects to be able to care for her, when she can't even get herself out of bed, is beyond me. He wants to get a nurse to stop in twice a day to help. For a couple hours. That won't be enough. He can't lift her. He can't care for her on his own. What is he thinking? Dh took him to the Center on Aging, and they told him he has to apply for Medicaid. He refuses, because he doesn't want to lose his house. We've tried to discuss it with him, but he thinks it's out of the question. The office told him he had no choice. That ticked him off. Now he's determined to just get her home. Period. We've checked into other facilities, (one in particular is an assisted living facility), and gotten him the forms to fill out, but he won't look at it. Our hands are tied at this point. We can't pay for this ourselves. We can't hire him a nurse. We just don't have the money. We can't take them in, our house can't accommodate a wheelchair. And it's just not big enough. We've talked about moving in with them, but we'd have to sell our house to do it, and there's no freaking way we can sell a house in this economy. There are for sale signs all over this neighborhood, and have been for a year. Nobody is selling. How do we help them? At this point, all we can do is try to help them help themselves. Go for the medicaid. Get into a facility that can help you medically and still help you maintain your independence. So what if they take the house? They won't take it until you're gone. You won't be out on the street.

Sigh. It's like talking to a statue.

So we're juggling a lot, and so much is out of our control. It's frustrating. But hopefully it will get easier soon.