Physical

Thursday was not a good day.

Dh arrived at daycare to pick Nathan up, only to find him pinned to the floor, his arms crossed over his chest like some kind of straight jacket hold. He had been having a major meltdown. When they tried to release him, he would literally punch at the caregiver. Dh got him away from her, but then Nathan turned on him, punching at his hands where Dh was trying to hold him.

It all sprang from Nathan's frustration over not being able to do something. They had been playing a card game, and they asked Nathan to rubberband the deck of cards. He didn't know how to do that, to double the rubberband up on itself when the band was larger than the deck of cards. Rather than ask for help, or just say he didn't know how to do that, he just flipped out.

I ran out to Barnes & Noble, and Borders, looking for that book Can I Tell You About Asperger's Syndrome, but I couldn't find it. I sure hope he doesn't get thrown out of daycare again.

Not that I would blame them if they did. But I'm down to my last options here. I know the Park District has an afterschool care program, but it makes me nervous because Nathan was suspended the last time he had a meltdown when at a Park District daycamp. It's so hard for dh and I to not have a daycare we can depend upon. When they suspend him for a day or more, one of us has to take off work to be home with him. It really isn't punishment for Nathan, because 15 minutes past the event, he is done with it, and suspending him from the program doesn't really relate to the event. On top of it, he gets to be home, with mom or dad. That's like a reward for the event. And I keep waiting for the day when work pulls me aside and tells me they can't keep having me run out on them everytime my son throws a tantrum.

I took Nathan to the pediatrician on Wednesday. All he cared about was, "How is he doing in school?" Well, he's doing great academically, but it's these meltdowns that are the big issue. The doc said not to worry about it, as long as he's doing great in school. "Good job, Mom." Sigh. That's just useless to me. I asked about taking Nathan to a specialist. The pediatrician said I could, but he didn't think it was such a great idea. He said they have drugs for autism, but they are all experimental, and he shook his head as if to say 'you don't want to do that."

No, I don't want to do that. I don't even want him on the ADHD drug. I don't want him on any meds. I just want him to learn some tools to help him cope with his frustration levels. Perhaps it is too soon for all the therapy to make much of a difference. Or maybe the therapy doesn't really affect that. I don't know. I just wish I knew how to help my son. I want him to not have to experience being pinned to the floor or having his arms held across his chest like a straightjacket. I want him to feel confidence in his own ability to control himself.

Where do I go to find help?

Slobby

Geez, I just finished cleaning Nathan's bedroom. Just how disorganized and slobby can one little kid get???

I know being disorganized is an Aspie trait, but it's still exhausting. At least now he has a desk again, and he can see his floor. I was so sick of seeing all that mess. It's not perfect. He has too much junk for that little tiny room. But I wasn't up to going through every toy, every piece of clothing, every whatever. I was pretty much just trying to get it livable again.

I know I need to keep on him, to clean his room pretty much every single day, or it turns into chaos. But sometimes I'm just too tired from work to want to deal with nagging a little kid I get to see too little of anyway.

I'll sleep good tonight, though, knowing it's at least presentable again.

Quilting Heaven

I had such a good day today!

I went to a quilting class. I'm really new at this, but I just love it. I haven't been able to do any quilting since I started working, and I was determined to take this class. I signed up for it last January, if you can believe that. This is a rare treat for me, and on top of it, I signed up for yet another class! I'll take the hand quilting class in another two weeks. Yay!

While I was at class, I realized I was truly in my element. This was something that rejuvenated me, and made me feel peaceful inside. That's something I've really lacked lately.

I felt so pampered today. It doesn't really make sense, because I was working hard on my class, and putting a great deal of concentrated effort into the work I was trying to accomplish, yet I felt that I was taking care of myself. I've needed some pampering. I've needed this.

Physically I've felt ill today, with stomach and headache (near migraine level). Fortunately the headache didn't kick into high gear until I got home. But my heart feels so much lighter. I'm wondering if I should have signed up for some more classes...?

Geez, crafting is like a drug to me. I even go through withdrawl without it.

Bus Blow-Up

Nathan had another meltdown today.

I had just arrived at work when the school called. The timing couldn't have been much worse, as far as work was concerned. Here we were incredibly short-handed and I had to leave my poor coworker to hold down the fort, completely alone. She was unbelievably supportive, though! (Made me glad I work at this company, instead of the type of places I've worked for in the past).

Nathan had flipped out on the school bus. They told me on the phone that they couldn't get him off the bus at all. I called dh at work to let him know what was going on, and the school called again while I was on the line, and left a message that they had removed Nathan from the bus, and he was now in the school gym. Hoo boy. This couldn't be good. I can't imagine who they enlisted to remove my son, and what kind of hell they went through in their attempt. I was anxious to find out how traumatic this had all been for my son.

When I arrived, Nathan was sprawled across the gym floor, looking like a trapped animal. His shoes were off, apparently thrown across the room. (Not at anybody, I hope). His glasses were thrown as well, but somehow survived. (Those glasses have been unexpectedly resiliant.)

I finally got Nathan calmed down, but the principal said she wasn't confident that Nathan had completely recovered from his meltdown. She suggested that we leave, but come back later when he was in a better state of mind. So that's what I did. By the time we returned, he was his normal self. He'd be okay, as long as nothing major happened.

It turns out that the whole incident was caused by the bus driver announcing that she was inforcing a seating chart, starting tomorrow. The kids would all have assigned seats. This was just too big of a change for Nathan to handle. He completely flipped out.

I'm going to drive him to school tomorrow. I can just see that bus being too upsetting for him, with the new seat and all, too soon after the explosion. And God only knows how the kids will treat him on the bus. I wouldn't count on them being kind; not considering their past history.

After work, dh told me that Nathan had "another incident" at school today, during lunch. However, this time they said "it wasn't his fault." Apparently, Nathan was eating lunch with his friend, and a couple other kids came up and started giving Nathan a hard time. Nathan got ticked off, and there was some kind of altercation. (I don't know if it was a physical fight, an argument, or what). Geez, nothing like throwing gasoline on an already burning fire. Nathan didn't get in any trouble, though, because they knew the other kids instigated it. They got in trouble instead.

I wish I knew what to do. I don't know how to help him. I'm sitting there hating the idea of me working and not being home with him, and hating that when he went ballistic today there was no one there who understood what was going on with him or why he was so upset, and hating that he was on the floor in the gym looking like a trapped animal when I arrived. I'm wishing there were people who could help him, make him feel less alone, teach him how to cope when he feels like exploding. I'm wondering if I should have kept him home and homeschooled him, or I'm wishing there was a school that was experienced with autism. I wish there weren't bullies to make his already difficult life that much harder. And just when I'm ready to cave in to tears, I pull a paper out of his backpack. It's his report card.

He received all E's. (like straight A's)

Gotta wonder how a little boy can face a world that is so harsh to him, battle his own inner battles on a daily basis, deal with bullies at a nearly constant onslaught, and still come home smiling with a great report card.

Support Group

I went to the support group meeting last night! It was so helpful, to be in a room full of people who KNOW. They know about meltdowns and daycares and schools, the same way that I know these things. That alone made me feel so much better.

They mentioned an after school care program, run by the Park District, called Sparks. The people who were involved with it raved about it, and said the Park District would even go to IEP meetings with us! Wow. I have to check into that further. There were two people from the Park District there, one of which I have dealt with before when signing Nathan up for camp. They said they would send me some info. Very cool!

The guest speaker talked about bullying. It was so depressing to me, that everyone talked about how it will only get worse as he gets older, and that middle school is awful about teasing. Geez, how could it get worse? We've already dealt with a bruised or broken tailbone, attepted stabbing, and police involvement. You mean it gets WORSE?

However, they did say that I should contact the school district and demand that they put Nathan on a Septran bus. They said because of the bullying, he is eligible. HUH? Why the hell didn't anyone at the school mention this to me before??? The school knows all about his bullying! It even came up at the Autism Team meeting the day before! Why didn't anyone suggest this to me??? How frustrating. But at least the support group gave me a great suggestion, and I'll have to follow up on that!

On a positive note, I really did enjoy going to the support group meeting. The people were all very nice. The networking was very helpful. I will definately be going back. For the first time in a long time, I was in a room full of mothers, and I felt like I was a part of the group, that I belonged. I wasn't sitting on the outside looking in, while everyone talked about boyscouts and football practice, and I'm sitting there worried about IEP meetings and meltdowns.

There were all kinds of stuff for sale, and I enjoyed that. I wanted to buy so much more (I only got a gel bracelet), but my wallet was achingly low. Maybe next month.

People were so friendly! I might have made a few new friends there.

Meltdown Emergency

Nathan had a full blown meltdown yesterday. The school secretary called me at work, and she sounded so ticked-off. She said it was an emergency, and that I was to come get him immediately.

I tried to reach dh, but he didn't have his cellphone on. I called his work, but he left a half hour earlier. I called home, but he wasn't there. So, even though we were two people short at work, I had to leave to get my son.

OMG, when I got there, it looked like a bomb went off. The classroom was a disaster area. They were still cleaning up. Paper and books, crayons and markers, all over the floor. They were picking up desks, too.

My poor son. He looked traumatized. They said he would sleep good tonight. They also said he would probably be hoarse from screaming. They had four or five people holding him down, pinned to the floor. They tried to let him up once, but he through a shoe at the principal, so they held him until he was calmer. Good grief. Everybody looked like they had been through the ringer.

I tried to tell them that holding him down only escallates the situation (in fact, holding him at all), but I also knew they probably had no other choice. I don't blame them. He could hurt someone else, or hurt himself. It just seems like there should be a better way to handle this. And I wish I knew what it was.

His poor teacher looked like a doe caught in the headlights. I looked at her and said, "I guess now you know what a meltdown is like." I was sort of kidding her, since she asked about it at the Autism Team meeting, only the day before. She nodded, like it was something she wouldn't soon forget. I felt so bad for her.

She kept saying that she had no idea what caused the meltdown. It just came out of nowhere. I knew better. I would have seen it coming. But that's something I can't teach to her. The signs are just too subtle, and too fast. She can't monitor him that closely, and be able to teach at the same time. I know she thinks she can see his mood change, but she has only seen the slow-building outbursts. She's never seen the real thing. The bad meltdowns come swift and powerful, and you get so little warning. It takes someone who knows him well, very very well, to see any warning at all. I tried to explain that in the Autism Team meeting, but I know she didn't believe me.

The principal and the teacher both asked me to find out what happened, why he had the meltdown. They couldn't get it out of him. I knew before I even got him home. It wasn't one thing, like getting mad about losing a game. It was numerous things, that all added up. For one thing, he was so hungry that his stomach was growling and hurting. Of course, he couldn't eat because the meds make him sick. Then they had a spelling game called "Sparkle." I didn't really understand his explanation of the game (I just let him talk without asking too many questions), but I understood enough to know that he was taken out of the game and that this really frustrated him. The real topper was the volume. The room got very loud, and everyone was talking. He couldn't understand why they wouldn't be quiet. His head hurt, and he finally exploded. (I noticed when I arrived that the air show had planes flying over the school. It was not as loud as it had been where I worked, but that noise must have added to his sensory issues, too). Basically, the loud talking in the classroom at the end of the day was simply the proverbial last straw on the camel's back. Nathan just couldn't take any more, and he exploded. Here he kept it together even after losing the game, but then the noise level was just too much.

That poor kid. He looked like he had been through hell. I just wanted to scoop him up and run off with him. It's so hard to see that look in your child's eyes.

Autism Team Meeting

What a week.

I went to the Autism Team meeting. It was very uplifting for me. They were quite pleased with my son's teacher, and how she has the room set up. They absolutely love his para, which is also a relief. Everything just seemed so positive, and so helpful! They seem to really care about my son and want to help him succeed in school and socially.

My heart went out to his teacher. We were all talking about what kind of set up to have in place for when Nathan has a meltdown. They made it sound like a "code blue" in a hospital, where people come rushing to the teacher's aid. The teacher finally asked, "What do you mean by meltdown? What can I expect?" I didn't know how to really answer that, because the way he responds at school is far different than how he responds at home. We tried to give her a rough idea, but I suspect all it did was frighten her. Can he throw things? Yes. Can he knock over furniture? Yes. Could he wipe everything off the top of her desk? I guess it's a possibility, though I haven't seen that exact move yet... That poor woman. She had to be thinking something along the lines of "I didn't sign up for this."

Ironically, Nathan did throw a little fit when I first arrived. He didn't even know I was there. He threw his homework on the floor, and then stood off to the side looking like he was really going to blow. He was staring at these behavior things the teacher has on the wall for all the kids. It's like a set of smiley faces on a popsicle stick, and they are different colors. Green is a smile, yellow is more sober, orange is frowny and red is a furious face. If kids act up, the teacher turns around an appropriate face. Nathan was staring at that red face, just waiting for the teacher to turn it around to represent his behavior. Yikes. Had that happened, he would have exploded right in front of her face. I tried to get him to calm down, but then they called me into the meeting before I got him back to normal. He was better, but not great. I hated to run off then, but they weren't exactly giving me much of an option - they were all waiting on me. At least he was better, and talking.

The woman from the Autism Team said that there was another autism group in Rockford! I haven't heard about that yet. Geez, why isn't this stuff easier to find out about?

The social worker also told me about a man at the School of Medicine that works with autistic kids with Social Stories. She didn't know about how much he charges or anything, but gave me his name. I'll try to find out more about him. I also got the name of a book to look for.

Speaking of books! Nathan's teacher read the book I gave her! She's the first person to do so. She said sometimes the kids ask why Nathan is acting like that, and she can give them the book. She said there is also someone doing a paper on autism, a student who helps out, and she is letting her read it as well. Great!! I'll pick up some more copies of it, and I'll let her keep the book. It can only help - and not just my son, but other families as well.

As helpful as the Autism Team is, and how good his teacher has been with him, I have to wonder if he wouldn't be better off in a school specifically set up to work with autistic kids. He's so bright, I don't want to pull him out of mainstream education, but is the public school system really equipped to cope with all of his challenges? God, how do other parents do this? Nathan is so high functioning - what about the kids who are not so high functioning?