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?

Never Again!

I received a call from the school, confirming the reschedule on the meeting to next Wednesday. Then she asked me if I would mind if they included the school psychologist in the meeting, stating that they prefer to work as a team, and he is usually part of that team.

I was speechless at first. I thought I was simply confirming my attendance at the meeting - I hadn't expected this. The thought of dealing with him again makes everything within me scream in alarm. I was at work while speaking to her, and I was not comfortable with getting too in-depth about what happened before, but I didn't have a whole lot of choice. If I didn't explain, I ran the risk of having him in my son's life again, and I was not willing to do that.

After hanging up with the school, I was distressed for a long time. Had it just been me that the psychologist affected and hurt, that may have been one thing. But this is my son, and I am not going to risk my son's well being on the presumption that this guy has reconsidered his viewpoint.

He was the one that literally refused to help me. He was the one that passed judgements on my child, and never even considered the possibility that a neurological problem could be at the root of his issues. He described my son with vehement and alarming bias. When I protested, he accused me of being in denial. When I was reluctant to medicate my son, he responded in anger, even though his own tests (and my son's doctor) indicated that he didn't need medication. He shouted at me with judgements that were unprofessional, let alone unkind. I was left reeling with the realization that my son had not only been judged as bad, but as evil and dangerous. And I was judged as inept in my parenting skills, as evidenced by my being "in denial" about my son's alleged depravity. (You bet, I'm in denial!)

Ironically, that "psychologist" did me a favor. It was because of the incident with him that I reached a breaking point. Never again. I will never again ignore my own instincts about my son. I will never again allow someone's title or position to overshadow my understanding of my son. I will never again trust so blindly. I would never again allow anyone to sway my certainty that my husband and I know that child better than anyone.

I know the woman from school didn't really know all the facts about what had transpired before, even after our conversation, but she did hear enough to make her realize that there was more to this story, and that including the psychologist as a part of my son's team could be ill-advised and potentially destructive. She was very gracious. And I appreciated that they valued my input enough to ask before they included that psychologist, and they withdrew the suggestion as soon as it became apparent that I was disturbed by it.

While I am quite willing to fight with force and ferocity for my son's serenity, I am also quite pleased when it becomes unnecessary to do so.

Postponed

Well, the meeting was called off. The person from the Autism Team that was holding the meeting was unable to make it because her daughter got sick. They are going to try to reschedule it for next Wednesday instead.

I'm a little bummed. I had been really looking forward to this. I guess after doing all this research about Autism, I had looked forward to learning something specifically related to my son and not the Autism population at large. I keep hoping to find something I can latch on to, something that will be of some help to my son, and make his world easier to function in.

At least the reschedule will be better for my work schedule. We are short handed this week, and my leaving would have been difficult. Next week does work much better all around. (Except for my patience, of course!)

Improvements

Dh and I were talking tonight, and we both agree that Nathan seems calmer lately. He still has his hyper moments and everything, but there are more and more un-hyper moments, if that makes sense. For example, before he used to always dash off at top speed if he wanted something, perhaps even crashing into people that happened into his path as he bolted. But now, he sometimes walks off to get something. It's a subtle change, but we've both noticed a difference.

Nathan told dh that he wants to get through the whole school year without having a "bad day." We both doubt the possibility of that, but Nathan insisted to him that the services at school are helping him, and he doesn't think he'll have a meltdown. I wonder if he is just parroting what he thinks we want to hear, or if the special services have really made a difference for him?

If the changes in him are due to the therapy and such, I wonder which is the one that is so beneficial? Is it the sensory work the physical therapist is doing? Or the music therapy? Or is this just the honeymoon phase that graces the beginning of a new school year, and the new-ness will wear off...?

Whatever the reason, and however long it lasts, I'll take every improvement I can get.

RockfordAutism.com

I've finally finished the website! I purchased a new domain name: www.RockfordAutism.com, and I hooked up with a web host. So the website is officially up and running!

I sent the link for the new website out to a handful of people now, to check the place out. I'm rather pleased with it so far. Easter Seals wants to put the link on their website!! Very cool!

There are things I still want to add to the site. I want to list the local organizations and what services or support each of these places can supply, and what one needs to do to obtain those services. The problem is, I'm so new to this that I don't know what's out there yet. I'm still learning. But at least I have the names of places to contact. They're all in the "favorites" list. I would also like to add more information about doctors. I'm also going to get more pictures to put in the gallery. Maybe the support group families will be willing to email me pictures to use....? In any case, I'll try to bring my camera when there are group events, and snap some photos. It will fill up quickly.

I also want to find out how to get a website to list out on the search engines. I need to also find out how to use RSS feeds in FrontPage 2002. I'm pretty sure it can do it, but I just don't know how. I had a dickens of a time getting them to post on my blog site, but I finally got it working.

The flyer for the support group was sent to me. How ironic! The guest speaker is going to focus on: "How to support your child when they are being bullied in the classroom, playground or in the community." Is that timely, or what? After all the bullying Nathan's been through, (and consequently, WE'VE been through!) I wouldn't miss that meeting for anything. Nathan's been bullied pretty much all his life.

The Autism Team

I'm so excited! The school social worker called and told me that the Autism Team has decided to take on Nathan's case. They came into his classroom to observe, and they have some recommendations to make. She wanted to know if I would be interested in attending the meeting, where the Autism Team makes their recommendations. (What, are you kidding? Of course I'll be there!) Yippee!!

I have no idea what this will be like, and if their suggestions will amount to any real hope for my son, but I have to admit that I'm extremely optimistic. I can't imagine any bad coming out of this, and the possibility for good is enormous.

Nathan told me last night in the car that he thinks all the time he is spending in the special ed services has really helped him, and makes school easier for him. I was glad he couldn't see the tears in my eyes. I want so much to help him, and to make his days less painful and stressful. So many things that come easily to everyone else are such a struggle for him, yet he is one of the happiest kids you would ever want to meet. He never stays down for long, even when he's had troubles. I want to see him get through his days without being bullied, without being looked at like he's defective or bad, and with all the joys of childhood that every child deserves.

A Web Site

I've been trying to put together a website, directed at parents in my hometown. I want a place where people can find local information. When I first found out about Nathan's diagnosis, I wanted to find support groups, and people familiar with autism. I had all kinds of questions about what kinds of doctors to take him to, what daycares or babysitters work well with autistic kids, suggestions on how best to deal with his issues. I asked the review board at the school if there were books I should look for, and they told me "anything by Tony Atwood." They also told me to get that book "Can I tell you about Asperger's Syndrome?" (I do love that book.) I'm still wondering if there are music or art teachers that are good with Aspies, or Cub Scout leaders, or team sports coaches. I've heard that there may be schools in the area that might be better for autistic kids (at least middle schools).

Anyway, I tried to gather up all the info I had, and put it in one organized place. I even put all the sites I found for awareness merchandise. (I just realized I have inherited "a cause" now). I don't know if the website is all that helpful yet, but I hope it will be. I'm hoping the local autism community will contribute to it. I need information in there for services, for one thing. I'm still finding out about that stuff. I hope to have more info soon, too, about medical considerations.

I started this blog, with the idea of giving newly diagnosed families a familiar voice. I think it really helped me to talk with other parents, and to find out they deal with very similar issues. It helped to feel less alone, to connect with someone else who "gets it." I'm hoping other parents might share their blogs, too, or maybe even be willing to start one up as well.

One thing that became painfully obvious to me was that I have difficulty in relating to other mothers. While they are worried about their kids performance in the basketball game last night, and how much stuff they sold for the PTO, I'm worrying about ISPs and new physical therapies, or worrying about my son being beaten up on the bus stop. I just don't seem to have much in common with the other mothers, and it is a terribly lonely feeling. I guess I'm hoping a blog could be a place where another mom might find something she could relate to.

I was surprised at how much I could personalize this blog. I chose the puzzle piece background, because puzzle pieces are the nationally recognized symbol for autism. They symbolize the puzzling disorder we cope with. The multiple colors symbolizes the diversity of the people who deal with autism, and how no two children with autism are the same. So I used multiple colors for the blog as well, and incorporated the puzzle pieces. I used the same colors and patterns on the website I built.

I have it parked on my old website, but if the support group approves of the idea and the website, I will go ahead and purchase a suitable domain name.

Worries

Well, the summer has drawn to an end, and Nathan is back at school. Friday he had his first note sent home, informing us of an incident where Nathan became upset. He pinched his finger when putting a chair away, and that put him in one of his snits. They said he glared at the para, and said, "I know how to do it!" He continued to glare at the para, and the para replied, "Please do not talk to me that way!" The teacher said she will remind him that this is not acceptable.

I've got to wonder if she realizes that he gets like that when he is overstimulated, and the pinched finger was more like the proverbial straw on the camel's back...?

On a good note, the neighbor kids have steered clear of Nathan all summer. Only once did they mess with him, after the cops came by. The boy saw Nathan in the yard, and yelled that he was going to cut off his head for calling the police on him. Nathan yelled back that HE didn't call the police, his mom did! heh heh heh

The neighbor girl is in his class again this year, though. I have waited on the corner with him for the bus, so she hasn't been alone with him yet. I'm afraid to leave him alone with her.

Geez, do all parents have these kinds of worries all the time?