A Look Back & A Look Forward

I have a new cyber friend that sent me a request to post this list of questions, and I thought it was a neat idea, so here goes! (You can find a link to AutismCards' 360 page in my Friends list). I'll post my responses later. :)

"AutismCards" writes:

Here are a few questions to ponder about 2006. I got this idea from another site, but thought I would change some of the questions to make them more applicable to the "autism theme" of my blog. You can leave your answers here or copy & paste the questions with your answers to your own blog and post a link to it in the comment section. I'll have to think awhile to come up with my own answers, so I'll post them later!


1. Share a treasured memory from 2006 of something your child with autism did or said and why it was special to you.


2. What challenge or task did your child accomplish in the previous year that you thought you might never see?


3. What was one of the funniest things your child said or did in 2006.


4. Name one goal - small or large - that you would like for your child to achieve in 2007.


5. Who has made the biggest impact in your child's life in the past year & have you told them?

Ho, Ho, Ho!

Christmas was so nice!

Nathan did wonderfully with all of the relatives. Even with all of the late hours, hectic schedules, and extra visitors, he really pulled through great!

I was out shopping on the 23rd, since I couldn't get much done on the 22nd. I made it out the door at the crack of dawn, literally. I had a lot of luck in the first store I went to, so I was able to wind up my huge shopping list before 10 am! Yay! Fortunately for me, dh was able to watch Nathan for me, so I could shop at my own (lightening) pace. Thank goodness.

I had most of the food prepared for Saturday and Sunday, so that all we had to do was pop it in the oven for a reheat, and we were set to go. With some determination, I was able to make it possible for my in laws not to have to cook at all, or go out to a restaurant, the entire weekend! I even had a breakfast casserole for everybody for breakfast. (It was a brand new recipe for me, but I thought it turned out really yummy!) For Monday, all I had to worry about was the turkey, and that's not a lot of work. There was plenty of leftovers for lunches and snacks, too.

I had all of the gifts wrapped before running out the door to my sister's Blue Jean Christmas (which was a relief). That was a lot of fun. We arrived just in time for Nathan to jump out of the car and hop on the horse-drawn wagon ride. Cool. He did so well with it!! This is the first year he really enjoyed it! We dressed him warmly enough (we made that mistake one year, and he was a miserable, crying popsicle). But he got off that wagon all smiles! It was good to see.

He was good with his cousins, too, but the noise level was having its effect. By the time we were getting ready to head out, he was getting really wound up. The timing was good.

He calmed down quite a bit on the way to Grandma & Grandpa's house. He did pretty well with all of the Christmas Eve gift giving. Even though it ran past his bedtime. I was very proud of him!

Christmas morning was nice. He didn't get everything he wanted from Santa, but he didn't seem to mind. (Yikes, he didn't have a single thing on his wish list for under $100! He even asked for the Playstation 3 AND the Wii!! Since he got a lot of smaller things, he didn't even miss those. Poor Santa didn't have room on his sleigh, or in his wallet, for those goodies.) He was a pretty happy camper with what he did get, and never once mentioned the things that didn't wind up under the tree. I think he's just glad that he didn't get socks or underwear like mommy and daddy get, heh heh heh.

The entire holiday was very nice. It was peaceful, and pleasant, and full of family. I'm looking forward to ringing in the New Year tonight. 2006 was not a very good year for me, for our family. I'm very optimistic that 2007 will be better.

Happy New Year to you all! May 2007 be full of family, friends and joy. May your health be good, and your successes be many. God Bless!

Holiday Happenings

Yesterday was long. I got up early and went to breakfast with my co-workers. I had the day off, and so did Nathan, so I brought him with to go have a little Christmas cheer with my department. Nathan did pretty well! He was starting to get pretty hyper by the end of it, but that was really awfully good. With no meds, and all the stimulation that goes with a breakfast in a restaurant, I couldn't have expected things to go so well.

After breakfast, I dragged the poor little guy all over town, shopping. He wandered off every time I blinked, but he was in a really good mood through it all. Shopping took me about four times longer than it should have, with all of the retreats to go find him again, but at least he was pretty patient with it all.

Evening was another story. I can't blame him. He had been dragged out of bed before sunup, and then dragged though Power Christmas Shopping, before finally ending up with the family gathering to wish an uncle Happy Birthday. It was too much. He finally started to melt down. It was not a pretty sight.

We had planned on going to the Support Group's Christmas party, but there was no way I could bring him after that tantrum. The excitement of a party on top of everything would have been an invitation for an even bigger disaster. I know the group would have at least been understanding, but I just couldn't put Nathan through that. He needed a break.

This morning I was supposed to go back out shopping, but there was no way. Nathan is so excited, he is crackling with energy. I need to keep him calm for a while. (How do you do that, a couple days before Christmas??) Tomorrow the family starts to arrive. Yikes. I'll have to be sure to bring ear plugs, and see if I can give him some kind of break here and there.

There were a few surprises lately, though. One was the Christmas Party at his school. Wow, that was an eye opener. First I find out that he's been playing football during recess with some kids. How cool is that??? He is usually such a loner, that he would stand there off by himself. Now at least he is joining in (and scored a touchdown, to boot!) Excellent! Then I go to his party, and I watch him from the back of the room. He's off playing and socializing with some of the kids in his class! I've never seen that before! He didn't eat a bite of food, which is typical, but at least he was being friendly with some fellow classmates. That was HUGE. And in spite of the noise, and the excitement, he was fairly well controlled. He was dealing with the elevated stimulation pretty well. I'm not sure how they accomplished that. Even I could feel the excitement in the air, there. An average day at school is usually pushing him to his limits, so seeing him coping with the extremes was really neat. I was very proud of him.

This holiday season has me a bit worn out. I have been battling a flu for quite a while, where it never seems to hit full force, but drags me down. And with Nathan's tantrums getting harder to deal with (he hits HARD now, and I can't just pick him up and scoot him out of the room), I am feeling it. On the other hand, the melt downs are getting further apart, and his social skills are improving greatly! That gives me hope, and a boost to face the next challenge.

I'll be glad when the holiday season begins to wind down to a close. I love Christmas, but it sometimes feels like I'm walking a mine field with Nathan. I don't know if the stress is getting to me more than usual, or if the stress is just greater. At least I'm getting to do some cooking this season. I enjoy that, and it's been like therapy for me. It's fun to delve into a huge feast for a big group. I enjoy cooking when I have a lot of time to devote to it.

Well, I need to get back to wrapping. And cooking.

Doggie Cancer

After we got home from the Parent/Teacher Conference, we took the dog to the vet. He had some kind of infection, we thought. There was a sort of bubble or lump near his anus, and we thought we better take him in and have it lanced, or whatever it is they do.

Visiting the vet was a nightmare. The place was packed, and the dog was freaked out. Nathan was starting to go into sensory overload, and looked pale with dark rings under his eyes. They made us wait forever, first in the main waiting room, then again in the exam room. Dh and I were getting ticked, standing in that hot little room for so long. Finally the vet came in, and she was a real piece of work. She was angry when she walked in (probably because the place was so busy) and made no attempt to hide it. The dog was all freaked out, and was hard to control, which seemed to piss the vet off even further. She was trying to give him his annual shots, and she was throwing stuff across the counter as she did so. Dh and I were startled by her unprofessional behavior. Then she took him into the other room to do whatever it is they do for heartworm checks. As she left the exam room, she SLAMMED the door hard, loud like a gunshot. (Yeah, and that's all Nathan needs, with his sensory overload). Dh just looked at me and mouthed "What a bitch!" (out of Nathan's eyesight). I nodded my agreement.

When the vet came back in, she seemed nicer. I should have known that was not a good sign. She said she had a chance to examine Riley while she had him in the other room, and he has a tumor. It would have to be removed as soon as possible.

My heart just sank. No wonder she was suddenly being nice. I didn't expect this. I thought this would be a quick and simple thing to get the dog fixed up, and we would all go on our merry way. Now we're talking cancer, and surgery, and risk.

I'm not so sure dh was really registering the news. He said, "But he's okay, right?" The vet did not give him a direct answer. I was kind of hoping for some sort of disclaimer, like "oh, he'll be fine, just as soon as we remove this lump." We never got that. She just told him that he needed to have this removed, and that she recommended that we have it biopsied. Her lack of a positive statement made my heart sink further.

So we take him in for surgery the day after tomorrow (Wednesday). We would have tomorrow, but dh has to talk to work, and let them know he will be in late.

I just hope Riley will be okay.

RockfordAutism.com Revamped

This has been a tiring weekend. Yesterday we went out to dinner with dh's parents and aunt and uncle. Nathan was not on his best behavior. In fact, he hasn't been that bad in a long time. He kept mouthing off to us, and was rude and defiant. Finally dh got up and basically dragged him right out the door, after Nathan threatened (and tried) to flip over the dinner table. He refused to go outside, and tried to resist dh's attempt to escort him out, so he just pulled him right along, and I joined them and helped dh pull him out the door, with Nathan threatening to chop off our heads. It was embarassing, and depressing.

We stood outside with him for quite a while until he calmed down. After that, he was considerably better, but we were feeling like we had been dragged through the ringer. (We think hunger was making his mood worse, and we waited for over an hour to get served). Poor dh wrenched his back in the process of pulling Nathan out of the restaurant, and may have given himself a hernia. Yikes. He's worried that he'll end up spending Thanksgiving in the hospital. We're both hoping it's just pulled muscles.

Tonight we all went out again. Nathan started to act up a bit, but I threatened right off the bat to take him outside, and he sort of reined in a little. He doesn't like the scene any more than we do. He was not exactly good tonight, but he wasn't really all that bad either. He was so-so, I guess. He was really hyper, and kept bouncing all over the place. It was hard to get him to eat. He started to get mouthy, but he did keep that in check, which was at least an improvement over last night. I wonder why he is so out of control this weekend? He behaves pretty well at home, then gets so defiant when we're out. I don't know if it's a blood sugar thing, and he's ready to eat, or if it's an environmental thing, or what.

Oh, and I've changed colors on the site! I was trying to put the new logo on the Support Group's website, and the puzzle pattern on the state of Illinois just seemed to clash with the puzzle piece border I had at the top of the page. I didn't like the combination at all. So I tried some solid color puzzle borders that I found in pink and in blue, and I like the look of this much better. I think it's less blinding, lol. I used the same pink background on 360, and on the LJ, too. It's calmer, and it allows the logo to stand out. I think it makes the site look more sophisticated. At least I hope it does. It's cleaner, and easier to read, anyway. I had some problems using the puzzle piece buttons on the new site. The words just didn't show up on the small graphic. So I opted to do it manually, instead of using the navigational bars. I put the page info beside the graphic instead of on top of it. It took a lot longer, but I think the results were an improvement. I'm curious to see what the Support Group thinks. (If they don't like it, I can always switch back).

Your feedback on the new site is welcome!

www.rockfordautism.com

Honor Roll

Nathan had a really good morning! He got up without me telling him, got dressed without being told, and fixed his own breakfast. Normally I have to keep telling him to do things, but this morning he was a step ahead of me the whole morning. It was great!!

Then I pulled out his folder, and was taking out the papers that he was supposed to leave at home, and I find this certificate. It says that he's on the honor roll! WOW!!

I asked him about it, and he just smiled. Like he expected me to know all about it. Like it was no big deal really. Just the honor roll.

A Day Off!

Monday was so much fun!

I took the day off of work. There was no school on Monday, and I was reluctant to put Nathan in daycare for an entire day. (The last two times we did that, he never made it past 10:30). We had hoped for my in-laws to be able to watch him, but they had a funeral to attend out of town that weekend. I requested the time off of work and got it.

I wanted to go out and spend some time with Nathan. We don't get to do that very often anymore. So I suggested going to the movies. That's a rare treat for both of us. Figuring that most parents would welcome the opportunity to sleep in on a day off of work and school, I opted on the earliest showing of the movie, hoping to avoid the crowds. Nathan picked the Santa Clause 3 movie. The theater was empty! There was one group of four parents and four kids way up behind us, and a mother and child at the far end of our row, and that was it! I couldn't believe how vacant the place was.

On the drive to the theater, I felt Nathan grabbing at my jacket collar and hair (I think he was just trying to hold on to my seat for leverage), and asked him if he was buckled in. He said he was, and I expressed surprise that he was able to just lean forward and grab the seat like that. I told Nathan he was getting so big! Then I began to tease him, telling him he can't be be that big, he's just a baby. He always pretends to be super annoyed with that, insisting that he's not a baby, and I play along and wail about how it was just yesterday that I was carrying him on my shoulder and stuff. As much as he complains about my calling him a baby, he seems to get a big kick out of the game, and we both play it to the hilt. At one point, I was saying something like, "You can't grow up, you're just my little baby!" and Nathan grabbed the back of my seat, giving it a shake, and announced, "GET AHOLD OF YOURSELF, WOMAN!" I just burst out laughing. Geez, I had tears in my eyes, I was laughing so hard. Where does he get this stuff?

Nathan had a hard time getting moving in the morning, so we left a bit late. We arrived about ten minutes after the movie was supposed to start. Since another one started in less than a half hour, I suggested we go to that one, and kill some time getting munchies and hitting the arcade. That worked out quite well, since that way our time in the arcade was limited (and helped limit the spending). Nathan had the entire arcade to himself! The driving games drew him like a magnet, and they had a bunch of them. He was getting hungry so we hit the lobby. I couldn't believe what they charge for a bag of popcorn and a couple soft drinks. Ouch. But what the heck. It's not like we do this often. We splurged.

The movie was cute. I was curious to see the new character that Martin Short played, and enjoyed him a great deal. They looked like they must have had a blast making that movie. There were some scenes that the kids really went nuts over, particularly one scene where the reindeer are passing gas, and snickering about it, and other scene where Santa's pants catch on fire. Nathan was just in a fit of giggles.

On the way home, we entertained ourselves singing Christmas carols, and got very silly. It was a great time. Later, we went to dinner with Grandma and Grandpa, and a bunch of other relatives, including a couple of young kids. To my great surprise, Nathan played extremely well with the two boys, and even shared his video games with them. I was very proud of him.

It was such a nice day!

Oh No!

Here we go again.

Riley's surgery scar has opened up. It wasn't really bleeding, so that was good, but still, it's a big concern.

Dh took him back to the vet this morning. He had to leave him to get re-stitched. We had just assumed that the dog had been licking his wounds, and opened them up, but the doc didn't think that was the case. He said it didn't look like he'd been bothering it. The dog is just so active and bouncing that he basically just wiggled out of his stitches.

The poor thing will be hurting again, I expect.

Bruised Again

I noticed yesterday that Nathan has ANOTHER bruise, this time on his other arm! It was bad, too!

The new one is red. It reminds me of the bruise you get when your skin is twisted - sort of red and speckled looking. But it is bigger than the last bruise, and much worse looking! I don't know where he got it, and Nathan has no clue.

I wonder if this happened with his last meltdown, but it just didn't show up well until now.

Getting Better

When I went off to work yesterday, the dog seemed much better. He was moving more naturally, and no crying at all. Phew. I'm not sure I could have left him if there wasn't some kind of improvement.

By the time I got home from work, Riley looked like his old self! He was bouncy and wagging his tail, moving without any apparent hesitation at all! That was extremely reassuring. Dh said he wasn't moving so well when he got home, but he gave him his medicine right away, and he seemed just fine, now. But either way, it was all a vast improvement over the night before. We were both relieved.

We have to take him back to the vet in a couple weeks for the follow up. He has a long scar, stretching from his anus to his tail, maybe four inches...? Yowee. I thought it would be much smaller.

I hope that means they got it all.

Poor Dog

I was scared to death all day about the dog. Dh never called me from work with an update, and at 2:30 he called to say the dog wouldn't come home until 4. He never asked how the dog was doing. He said, "No news is good news." Shoot. Not to me. I've dealt with cancer before. Silence is not good news. All this waiting and uncertainty was really getting to me.

Shortly after 4, dh called to say that the dog was home, and he was in a lot of pain. They gave him meds, but only five days worth. I guess that's a good thing, that they expect pain to subside so quickly...?

When I got home from work, Riley was just laying there. If he stood, he barely moved. He looked afraid to move, which was probably pretty true. But then he started the crying. Oh my! That poor dog! He would just let out this looooooong cry. I asked dh if he gave him the meds, and dh said no, not yet. He wasn't sure if he should, if it was okay so soon after the surgery. I insisted he call the vet right away and ask. That dog needed something right now.

The vet said it was fine to give him the meds now, so we did, but there didn't seem to be any improvement in his crying. That's when it occured to me that the poor thing was probably scared to death. He'd never been in pain like that, and didn't know that it would ever end. Finally, he fell asleep, and the crying stopped.

Poor little guy.

Bruised

I got a call from the school today. At first I thought they needed me to come and get Nathan again. It was the principal, and she said she just wanted to let me know that Nathan got hurt at school. He was rushing to get outside for recess or something, and some kid pushed the door, and it hit Nathan right in the upper arm. He has a large bruise from it. They just wanted to let me know that he was okay now, but they didn't want me to find this bruise and wonder what the hell happened. I thought it was very nice of her to call. I also warned her that after getting hurt, Nathan would be ultra sensitive. She said they were well aware of that, and that his para was "hovering" over him. That's good. He didn't need another meltdown on top of this.

The bruise is pretty big, and nasty looking. I told Nathan if something like that happens again, and he just felt like talking to me about it, that he could ask the principal to call me at work and we could talk. Poor kid probably could have used a hug at the time, but maybe next time he can call and at least get a verbal hug.

Competition Catastrophe

Today was my son's Parent/Teacher Conference. I was looking forward to it, expecting his grades to be pretty good. Plus, I was taking off work a little early to go, which is kind of fun. But I didn't expect to get a phone call an hour early, telling me to come and get my son.

He had had another meltdown. Two, actually. They said they were trying not to call me, knowing I was coming in that afternoon anyway. However, things got so bad that they couldn't hold off any longer.

I knew that morning he had seemed ultra sensitive and emotional. I just asked him if he had any library books to bring back, as I hadn't seen any the past week. He burst into tears and said that he had gotten upset at school, and they didn't let him go to the library that week. Yikes. I didn't know what brought it on, and I had hoped it was just a brief mood; one that would improve with a little breakfast and his meds. He seemed pretty happy by the time I brought him to the bus stop. But I guess the mood lingered.

Around 12:45, they were playing a bowling game in gym. He did not do as well as he wanted to, and he got very mad. They finally got him calmed down, and then he went on to therapy, where they had him compete in a spelling challenge with another boy. Not a good idea. If he's already had one bad experience that day with competition and unsportsmanlike conduct, it is best to avoid anymore competitions that day. Nathan was determined to win, but the game ended in a tie. In Nathan's mind, there was no clear winner, so there was no prize (sticker) for anyone, even though they intended to give both kids a prize. He just flipped out.

When I arrived at the school, he had calmed down considerably. He was still not himself, but he was at least not angry any longer, and not violent. I wanted to bring him home, but I had to be back at the school in less than an hour for the conference, so I brought him to Grandma's.

It was on the way to Grandma's that he admitted to me that he had hit someone. The principal. She had tried to restrain him, crossing his arms over his chest, and he lashed out. Double Yikes.

He was behaving himself pretty well by this time, and I stuck around until the last minute to see if he was completely past the meltdown or not, but he seemed fine at Grandma's. Dh showed up (I had called him on my way to the school to tell him what was going on), and we left for the conference together.

Nathan had a pretty good report card. It was not as good as the last one, but still, all E's and S+'s (like A's & B+'s). That was good news! Plus, the reports from the team of therapists showed some real progress, which was encouraging after such a disasterous afternoon.

Halloween Fun

Halloween was great! Nathan went as Darth Vader, and dh took him around trick or treating. I stayed home and passed out candy.

Boy, did I have a lot of older kids! When their voices are as deep as dh's, I have to wonder what they're doing trick or treating. And I even had some grown ups asking for candy too! LOL!

It was cold last night, and I had a hard time getting Nathan to wear a coat, but I finally found one of my navy hoodies with thermal lining that I could wrap him up in, and a pair of gloves. Since the hoodie was so dark, it looked black outside, and didn't detract from the costume, and the hood was hidden under Darth's cape. He also had layers of clothes under the costume. He still looked like a little ice cube when he got home. And dh looked exhausted. They must have walked three miles.

This is the first year that the scary part of Halloween didn't seem to bother Nathan at all! I was glad of that. He went to a couple houses where the families made a big deal out of their decorations, including one house that had people in costume in their front yard that you had to walk past in order to get to the door to trick or treat. In past years, Nathan would have frozen and refused to budge, but this year he marched right past them.

(My little baby is growing up!) :*)

I was passing out candy last night, and went through one mega bag, and started on a second one. That's a lot of kids! We had this candy bowl with a skeleton head in it, and it would talk and sing (..."I ain't got no body...") It was quite funny, and a real hit with the trick or treaters - their parent escorts, too! Some hung around for a little bit, playing with the skeleton.

I love this time of year!

Three Pairs, Three Spares

It occurs to me that I haven't really said much about my family here.

I grew up in a very large family. There were nine children, including three sets of twins. I'm part of that third set. (That explains the "twin3rd" screen name, huh?)

My mother used to tell people that she had three pairs and three spares. I always used to think that was kind of a crummy way to refer to the non-twins, but after hearing my brother once proclaim with a big grin, "I'm the oldest spare," I realized that the "spares," had a sense of humor about the whole thing. I suppose they kind of had to, growing up in this family.

My oldest brothers are twins, then there were two individual boys and a girl, then another set of twin boys, and finally my twin brother and I. Our birth was unique enough to land us a story on page three of the Chicago Sun Times, labeled "She Pleases Everyone Who Counts." The artical went on to describe how my brothers were hoping my mom would bring home another brother, and my sister was hoping for a little sister, and my mother managed to please everyone who counted. It was a great idea for a story, had it only been true.

Truth be told, nobody wanted another sister. My brothers wanted another boy, and my sister didn't want to lose her place as the only girl in the family. So nobody wanted me to be a girl. Oh well. It did make for a good headline.

None of the twins are identical, though there is a pretty strong resemblence among all of my siblings. It often becomes a guessing game at weddings and such, where people try to figure out who is twins with who. They are rarely correct.

Can you guess who's twins with who?

The Wedding

Last night was the wedding, and it was wonderful!

Initially, when I saw the invitation, I wondered what on Earth I was going to do with myself before the reception started. The wedding was expected to begin at 3, with the Assembly of Barat. Now keep in mind, I have no idea what an Assembly of Barat is, and therefore couldn't guess how long it could take. I saw that the reception didn't begin until 6, and I pictured us wandering around Woodfield Mall or something in order to kill time until the reception. Or maybe grabbing a quick bite to eat at McDonalds, to keep my guys happy. At least, that's what I figured, until I arrived at the hotel.

I was informed that the Assembly of Barat was exected to last up to three hours. Three hours! I was worried at that point. I had never brought my son to a wedding, let alone one that lasted three hours, and had no idea how he would be able to handle the long ceremony. Oh well. It was too late now to worry about it. We had to take our seats.

The ceremony took place in this structure they called a tent. However, this was really more like a half-building, half-tent. Thank goodness, because it was incredibly windy, and a standard tent would not have been able to withstand the unusally strong winds yesterday. There were times I really wondered if the tent would come down. Even the chandeliers were swaying, right above the heads of my family. The stucture proved quite sound, however.

The ceremony started with the groom being presented to, and welcomed by, the parents of the bride (my brother and sister-in-law). It was a lengthy ceremony, with some lovely traditions and hymns. The man who officiated over the festivites was kind enough to explain all of the traditions and symbols and prayers as they went along, so those of us unfamiliar with the ceremony were able to understand what was happening. I really appreciated that. It was all quite lovely.

When I realized that the ceremony was coming to a close, I was pleased to see that it hadn't lasted all that long, and my son had been an angel through the whole thing. That's about the time that they announced that the SECOND cereomony was about to start. This would be the traditional American ceremony. Oops, only half done.

But the two ceremonies together lasted about an hour and a half or so. It wasn't all that long, after all, and my son did wonderfully! He never acted up once. I was so proud of him!

We then gathered in the lobby of the hotel, where there were snacks and drinks set up. We ate and drank while the tent was being rearranged with a dance floor and dining tables for the reception. Formal pictures were taken of the bridal party, then the bride changed into her second dress, a traditional American white bridal gown, and came down for more pictures. We returned to the tent after that, and the party really kicked into gear.

Nathan did quite well, right up until the dinner began. Then he started to melt down. I got him out of there quickly, but as soon as we returned, it happened again. They weren't full blown meltdowns, but he did start to get ornery and crabby, and began to make faces at us, and talk back. I took him out twice, and dh took him out once, before I was finally able to persuade him to eat. After that, he was fine! I guess he was just hungry. (He refused to eat the snacks in the lobby- a little too exotic for him). Can't blame him for being hungry - we were all starved! He was just fine after that, and had a great time playing with his cousins.

It was so wonderful to see my family together again! It's rare for us to all be together. And it's so much fun to see everyone having a good time. We stayed later than we planned, but it was hard to leave.

Henna Hands

The Mehndi party was a blast. I loved it! The henna artists had some really cool designs. All the other women there went with very elaborate designs, but I stayed kind of conservative. I only had one hand done, and a design that stretched from above my wrist to the tip of my ring finger. My relatives went all out with the designs. It was so much fun!

A Mehndi party is traditionally an event for the women, but my neice and her fiance were combining their traditions for a very personalized event. They invited couples to the Mehndi party. It seems to be all about adorning and pampering the women. Many of the guests were in traditional Indian attire, and it was so pretty! My neice looked like a princess, and the groom-to-be looked so handsome!

There was Indian music, and dancers. The food was all Indian, (except one pasta dish), and it was very exotic and spicy and delicious.

There were far more of my relatives there than I expected! So many people I hadn't seen in ages! It was great. Even my brother came in from Alaska. My brother from Nebraska got trapped by the bad weather, which was ironic since he is a meteorologist, LOL! The sad thing, though, was that he is the father of the bride! He didn't show up while I was at the party, though I heard he finally got to the airport. He was said to be on his way, but I couldn't wait around to see him since I was riding with other relatives, and it was getting very late for our drive home.

I got such a kick out of the henna hands, though. I love this tradition! They use an applicator that resembles a scaled down version of a cake decorator. Then they pipe the henna paste onto your hand in these lovely patterns. It feels very cool (and tickled just a little bit). Then they sprinkle the paste with glitter, and sometimes set faux jewels into it. It looks so neat! But I was concerned with being able to eat and even use the bathroom with this on my hands, so I opted for a less elaborate design. Perhaps at a different event, or if I did this by myself, I might get a bit more adventurous. Anyway, the paste has to stay on your skin for a while, preferably overnight. Then you flake off the paste, and beneath it, the skin has been stained a red or reddish brown color. Mine is a brick red color.

The tradition says that the longer the bride's henna lasts, the better husband her future groom will make. The reason for that is because daily chores such as laundry and dishes and cleaning, all work to fade the design quickly. If her design lasts a long time, it is because her new husband is pampering her, and doing the chores for her. (I like that tradition!)

You can see my 'henna hand' in the picture. This is when the paste was still on. The design is also on my thumb, though you can't see it in this picture because of the way I turned my hand. I'm hoping it lasts a very long time. I really like the pattern. I've never been very interested in having a tattoo, because of the permanant nature of it, but this I would definately do again. I'll have to find out if there are any good henna artists in my hometown.

Mehndi Party

Wow, it's been a crazy week. We had a bunch of layoffs at work, in an effort to downsize. I was spared. But it was so sad to see all the people gone, and all the empty desks, whether they were let go or just transfered to a new department. Shakes up the sense of "job security" a bit. On the other hand, it was pretty cool to find myself still employed, in spite of the fact that I was so recently hired. My boss had been hired just a few months before me, and she said, "I don't know about you, but I'm feeling pretty lucky!" Yeah, you can say that again. (Shoulda bought a lottery ticket.)

Tonight I'm heading off to my first Mehndi party. It sounds like a lot of fun. There will be a henna artist there, and I'm thinking about having my hands done. I'm going with my sister, my nephew and my nephew's girlfriend. I can't wait! It will be fun to get out and socialize, and it will be so neat to see my family again. We so rarely get together anymore. I'm going without my husband and son tonight, which is also rare. Makes it kind of feel like a "girl's night out," especially since I'm going to be with my sister. Plus, it will all be my family there, so there is the element of homecoming. And the party isn't all that far from where I grew up, so it will be like revisiting my old stomping grounds, or at the very least, my old shopping grounds (the big shopping mall I used to frequent is in the town I'm going to). I'm quite excited about tonight!

I bought my son a dressy outfit last night, that he'll need for the upcoming family events. I got a pair of navy dress slacks, a light tan shirt and a blue tie. Oh my! He looks so grown up in it! And he is SO excited to be able to dress up like his daddy. We hardly ever dress up around here, so it was a real kick. :)

I'll have to go find my camera. Maybe it's time to buy a new memory card for it. I'll want a lot of pictures of this...

Quilting Fix

I had another quilting class today! It is so rejuvenating. I can't express how much this does to uplift my soul. I needed it. I've been so weary lately.

We focused on hand quilting this time. I think I enjoy this more than the machine quilting (for the decorative stitches on the top), though I can't honestly tell you that I'm any better at this than I was the machine quilting. Oh well. It just takes some practice, something I usually don't have a lot of time for. But I'll get there. :)

Today was a really good day. So nice. So peaceful.

I really need to do this more often.

Darth Vader

I just love Halloween!

Today we went out to get Nathan's Halloween costume. Hooboy, what a decision. Leaving the decision to Nathan is never quick or simple. It is best to give him a very limited choice, or you could be standing there for hours while he tries to figure out which one he wants. (His teacher found that out the hard way when she asked him to bring his favorite pencil with him to the music room - 20 minutes later he happily left with the perfect pencil in hand...)

But hey, this is Halloween! And a kid has got to pick his own costume. That's half the fun! So we resigned ourselves to be at the store forever while Nathan made up his mind. Dh had the brilliant idea of giving him the sales flyer for the costume shop, a week in advance. So by the time we walked in there, Nathan had it narrowed down to three! We ended up getting out of the store in a reasonable amount of time, we got two mega bags of candy, and Nathan got to pick his perfect costume. :) It was so much fun! We got tshirts that said "...got candy?" and Dh got a skeleton to hang on his machine at work. LOL!

All we need now is the pumpkin!

No Room

I tried applying to a program in town for after-school care for kids with disabilities. Unfortunately, they are full, and have a waiting list. They may be opening a second location soon, but they didn't know where it would be. It may not even be close to us. And it wouldn't be available until next year. Not exactly the news I was hoping for. As far as I know, I am all out of options. It seems like I have no other choice but to keep him in his current program for now.

Hating Daycare

My poor baby.

Yep, another meltdown today at daycare. I've got to find something else. This is just too hard on him, and it's killing me to see the look on his face when I arrive.

He looked like he had just been in a battle from hell. His face was red and blotchy, his eyes had dark rings under them - at first I thought he had black eyes! He was absolutely miserable, and he started to burst into tears when he tried to tell me what happened.

It didn't help that as soon as he started to talk, the caregiver started giving him flack for tearing the place a part. I carefully explained to her that his meltdowns are a response to an overstimulation to his senses, and that he has no control when they occur. I was basically trying to interrupt her so that she couldn't keep lecturing my son. I didn't try to minimize why she was pissed off. I understood that. But I didn't want her to continue trying to discipline a child that was not only traumatized, but unable to control his actions. She started in on him a second time, and I interrupted her again. I wasn't being mean or rude. But I wanted her to talk to me, not to him. He had obviously had enough.

At one point, Nathan started to tell me what took place, and said that he was hit. The caregiver exclaimed that this was more than he had told her! Gee, big surprise. I told her he is autistic (I didn't know if she had been told before) and that he has trouble communicating sometimes. I said he needs to start at the beginning, and talk through it step by step. I then turned back to Nathan and asked him again what happened. He had already clammed up after she interrupted him, and I needed to do a little coaxing, but I got him to talk again. He said that he was hit. I asked him if he was hit by a ball (they had been playing a ball game), and he said no, it was a part of someone's body! Then he burst into tears and said, "He told me that he didn't care! He hit me and he didn't care!" Aw geez. He is so sensitive to injustice, that he just can't handle when others won't apologize or won't show regret. Poor kid. I said, "Nathan, I care." Somehow this seemed to calm him down considerably. I think that's all he really wanted, was for someone to give a damn that he'd been hurt. Not so much to ask.

Before we left, I asked if he was thrown out of the after-school-care, or if he could attend tomorrow. She said no, he could return tomorrow, but NOT TODAY. Yeah, no problem. I couldn't wait to get him out of there.

On the way out, we ran into the kind man who we had talked to yesterday. He could see for himself the look on Nathan's face, and held out his hands saying, "what happened?" I told him that today was worse than yesterday. He shook his head and apologized. Nice guy. It looked like he was just coming on duty. Too bad he didn't get there earlier. Maybe Nathan would have made it today.

You know, Nathan has a pretty good read of people. He has good instincts. He can tell when someone thinks he is bad, even if they don't say the words. That woman caregiver had a real attitude about Nathan. I had a pretty good impression that this was making the whole meltdown much worse than usual.

I've got to do something. I don't know what yet, but I have to change this. I need to get him somewhere where there is more patience, more understanding, more compassion. Does it even exist here? How can I keep facing that look on his face? That emotional pain?

The Daycare

Oh man. Another bad day.

I got a phone call at work to come get Nathan. They said he flipped out when they tried to separate him from his buddy. Then they grabbed him, to remove him from the group. They discovered quickly enough that grabbing him is not going to help the situation any. He went ballistic.

When they called, my son was in a corner, and throwing things at the caregivers. He had already hit several of them, and tried to yank a jacket off another. It sounds like he was also trying to hit people with his own jacket. I was relieved to find him unrestrained (though separated from the crowd, which is a good thing), and not pinned to the ground. That at least was a step up from Thursday's incident. One of the caregivers disappeared the minute I showed up. She looked pissed. (It makes me wonder if they even have any idea what they are dealing with, or if they even know he has autism. I sure hope they have been made aware. It would really stink to have a job like that, and not be told that one of the kids has these sensory and meltdown issues. I know they weren't told at his school. That just frustrated me to no end, and I can only imagine how it must frustrate the poor caregivers).

By the time I reached Nathan, he had calmed down. The guy told me I could bring him back tomorrow, and that he thought it would be okay because he could see some things that worked with Nathan, and some of the things that didn't work. Wow. I don't usually hear that kind of response. The man seemed very kind, and he was confident that he would have a more successful day tomorrow. I sure hope he's right. I really appreciated his willingness, and his lack of judgement.

This was all such crappy timing, too. Today I emailed in my employee review. Sigh. I was so hopeful that all these meltdowns would fade away, and at least be few and far between. No such luck. At least not yet.

It worries me.

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?

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?

Mommy, I don't feel good

I doubt there is anything in the world more distressing to a parent than to hear the words, "Mommy, I don't feel good."

And it wasn't just the words. It was the look that accompanied it. That look that made my stomach drop and the hair raise up on the back of my neck.

You can tell me my son was just reacting to the heat, or experiencing "heat illness" or "heat exhaustion." After playing all day in the near 100 degree temperatures, he just needed to cool off and get some flluids in him.

But you didn't see his face.

And you didn't hold a cool washcloth to his brow as he threw up every drop of liquid he got into his system, and then ran to the bathroom with diarhea.

And you didn't see his temperture keep dropping lower...and lower...and lower.

And you didn't hear him crying over the migraine headache that hit him, or hear his protests against any light or sound. I even had to unplug the aquarium pump in his room because the noise of it was too painful to hear. He began to panic if I left the room, or tried to, even if I would be within his sight.

We finally got him to the hospital. My husband was incredibly reluctant to go. He finally agreed though, that if we tried one more time to get him to drink something, and he threw it up, that we would go to the emergency room. We tried. He threw up. And off we went.

But as it goes with kids, my son started to perk up the minute we got to the hospital. We sat forever in that waiting room, emergency bucket in hand, and kept trying to push water at our son. He drank and drank. Sips, mostly. And after about 45 minutes, he looks up at me and asks, "What's for dinner?" At that point, we decided to head home, and return if things didn't keep improving.

Of course, he threw up the water as soon as we walked in the door at home. I probably would have high-tailed it back to the emergency room, if my son hadn't improved tremendously. and began acting like his normal self. His color improved, he was laughing and joking, and his temperature was back on the rise to normal. We pushed more water on him, then put him to bed. I was in checking on him about every 15 minutes all night, but there was no real change. His temperature was near normal, his color was normal.

This morning he acts like nothing happened. He's rolling his eyes at me as I hand him another bottle of water. But he's drinking it. So far so good. And he asked for an apple.

I've got my fingers crossed that the "heat illness" is past. But he's sure as hell not going back to camp today, with the weathermen predicting record breaking temperatures and the hottest day of the year.

I need a nap.

Small World

How wild. I just had a distant cousin email me, one I'd never met. She and I were swapping geneaology info. It was pretty exciting to me. All of our info matched, except she didn't have some of the details I did. Like how did I know where my great grandfather came from (in Germany), or my great grandmother's maiden name. She had never had any luck trying to track down info on our last name.

I knew where she was coming from. I couldn't find anything at first either. But I was lucky enough to have a copy of my grandfather's birth certificate. That led me down a certain path that got me a marriage license, a death certificate, burial plots, etc. Who knew you could get a marriage license from 1886? Too cool.

So my family got one person larger today.

Stepping In

I got a call at work today, from the police. They were going over to visit the neighbor today. They will tell the parents to do their job, and tell the kids to stay away from Nathan, and if they don't do it, then, "We'll step in. And they won't like it if we step in." He gave me his direct phone number, and said to call if I have any further problems. He said he would call me and let me know how it went, but I haven't heard from him yet. You should have heard him. He sounded like he was glad to go over there and scare the living bejeebees out of them - he kinda scared me, lol.

Calling All Cops

I finally got a call from the police department, the Community Services division. He said my letter drew the attention of the mayor's office, and that office forwarded it on to him. I'm supposed to call him back tomorrow.

Bullies

It went really well, I think. The IEP was finished. We did get the para minutes, and I found out Nathan's teacher fought very hard to get them for us. The para will be here for the most challenging times for Nathan - the times of the biggest transitions, and the majority of the meltdowns. The para will also be on hand in the building in case Nathan has a tantrum during the other hours, and needs to be removed from class.

My niece sent me a book on Social Stories that looks really interesting. The IEP mentioned Social Stories, and said they would try to set up one for Nathan about his new teacher, with pictures and the classroom rules and such. However, he only has a partial day of school left, and I haven't seen it. They did tell me if they didn't get it done this week, that I could talk to them during Registration, and they would have one for me then.

I did go to the Easter Seals Seminar/Autism Support Group last week. It was pretty good. I got hooked up with the woman who runs a local Aspie Support Group in Rockford, and met a few parents and relatives of kids with autism. The support group usually meets once a month, but they take off a few months in the summer, so I won't see regular meetings pick up again until September. But they did have a few suggestions for me. They said to register Nathan with Milestone, and The Arc. Milestone has services available, such as respite care. They have people trained to work with autistic kids that can babysit for Nathan, and they give you an allotment of free babysitting hours that you can use in a month. The Arc has some services too, and one thing she told me was that The Arc is known to pay to send people to conferences and seminars, such as the Tony Atwood seminar in July. I also got signed up for an online bulletin board for the Rockford Aspie Support Group, and for another national bulletin board that is for high functioning autism.

We're having a major problem here with the two neighbor kids bullying Nathan. They are really getting nasty. I've told the kids' mother about it, but she won't do anything. I spoke to the kids and said that the bullying had to stop, that Nathan was getting (physically) hurt, but it hasn't stopped. A few weeks ago, the kids tried to use a collapsible basketball hoop as a catapult, and Nathan as the ammunition. He fell several feet to the blacktopped ground, landing on his backside. He couldn't sit down for a week. (It's possible they broke his tailbone, but I was told there is nothing they can do for a broken tailbone - they just give you a "donut" to sit on, and that's often worse than sitting on a solid surface).

On Friday, the boy next door threatened Nathan with a scissors, telling him he would stab Nathan, and that he would cut his head off. He made stabbing gestures at Nathan with the scissors too, making Nathan jump back to avoid the blades. The kid took the scissors and cut the buds off of our peony bush, to demonstrate how he would cut off Nathan's head. He scared Nathan half to death. Quite frankly, he scares me half to death too. Dh and I went over and spoke with the father, telling him that Nathan was autistic and that this left him particularly vulnerable to bullying of this sort. The father's response was to tell us "boys will be boys." He's not going to be any help, we can see that. Even after the talk, the bullying has continued, with an incident every day. It hasn't been as violent, but it's still going on.

I sent a note to Nathan's teacher when he went back to school this week, and asked that she keep an eye out for Nathan on the playground and stuff, because I was afraid the kid might go after Nathan when we weren't there to protect him. The teacher turned the note over to the principal, who called me at work and insisted that I call the police. Dh is very reluctant to involve the police, and fears it will make matters worse, but we did email the police department to tell them what is going on and to ask for their opinion on how to handle the situation. I haven't heard back from them yet.

On a positive note, I talked to the Park District today, and they will be working with Nathan in his daycamp for the summer. They are very familiar with autistic kids, and have interns that can shadow him all day while he is there. They sounded absolutely wonderful on the phone, and gave me hope that this would be a very positive experience for Nathan. We had a lengthy conversation, and I was pretty happy with the way it went.

My Aspie - It's Official

Well, it's official. The review board for the school determined that Nathan is mild to moderately autistic, specifically Aspergers Syndrome.

He has an above average IQ, and tested off the charts in his eye-hand perception. They had never seen anything like it. If they had a "mensa" category for motor skills, Nathan would have earned it, lol. He also scored very high in vocabulary and reading, but poorly in pragmatic language. So he knows the words, but can't use them in a social context very well. For example, if Nathan doesn't understand one word in a sentence, the whole sentence is lost on him. It was all very interesting, considering that academically Nathan tests out far lower than his grade level in reading, but on these tests he scored very high - well above average, as I knew he was.

The woman who did the testing told us that she knows Nathan's intelligence could be higher than the tests demonstrate. She said that she would ask a question, and Nathan would obviously know the answer, but he wouldn't directly answer the question - he would talk all around it. For example, if you ask him, "Nathan, what is a cow?" (They need for him to say "animal".) He might answer, "A cow is a milk producing mammal that lives on a farm. Cows make a moo sound. My uncle showed me his cows, and said I could milk them, but I was afraid to get too close. They are big." Yes, he knows what a cow is. However, since Nathan didn't say the word "animal," she couldn't count the answer as correct. (That may sound picky, but they have to stick to certain rules, or it all becomes too subjective.) The intelligence tests are not well suited for someone with Asperger's, she told me. In spite of this, he still tested above average.

They are going to provide him special ed services each week. He will get occupational therapy for his sensory issues - a lot at first, then less as the semester progresses. He will get social instruction, like how to interact with his peers. He will also get speech/language therapy, to improve his pragmatic language. Nathan's teacher demanded para minutes, but that requires fighting for it with the board of ed, and they were all quite fearful of doing that. I heard the phrase, "I'm not putting my neck on the chopping block." His teacher was ticked, and insisted that she would call and demand it if they wouldn't. From what I understand, there is a high demand for para minutes, and very little staff. Oh, and the teacher fought for "social stories," and they finally agreed to include them.

Anyway, they did find me a support group, and I go to that next week. I also was given the name of a couple books/authors. I picked up a Tony Atwood book, and a great book called Can I Tell You About Asperger's Syndrome? It was written from a kid's perspective, and looks like it will be very helpful in discussing this with Nathan. It was simple enough that it would have been great to have given his daycare providers, too, so they would know what it was like to be around a kid with AS. I wish I had that book years ago.

So it felt like it went well, though I don't have any basis for comparison. They all spoke so positively about Nathan! Every single one of them said he was very bright, and two of the group each referred to him as "charming." A world apart from the school that treated him like a demon child, and insisted I "take him home and make his life a living hell." They spoke very nicely about him, and expressed how well they expected him to do academically, with the help of the services.

I'm so exhausted though. I really need to sleep for about a week...

Autism or Aspergers

I had to go to the school this morning for an appointment with the social worker. I guess this is the last of the interviews and such before the meeting on May 17th when the school presents the findings of the review board, and sets up an IEP.


The very first thing the social worker asked me was, "Are you familiar with the terms 'Autism' or 'Aspergers'?"


She was not giving me a diagnosis. I think this was sort of a warning for what to expect. She said, "Nathan does exhibit many characteristics of Aspergers. " She said that she does not present a diagnosis, but rather it is something that we all decide together, and that dh and I are a big part of the diagnosis - whatever it is.


I told her that what I was hoping for was to find support groups, people who were familiar with the kinds of issues my son faces, and who can help me to find ways to help him. I want suggestions on what doctors to take him to, what daycares or babysitters work well with autistic kids, how best to deal with his eccentricities, etc. Are there music teachers, art teachers, Cub Scout leaders, or team coaches, who are good with autistic kids? What about schools? Are there medical treatments that can improve his symptoms, or physical therapy type treatments like the sensory therapies I've heard you guys talk about?


She said there is a group within the board of education here that specializes in autism (The Autism Team), and she is going to refer them to me, and see if they have any suggestions on the things I've mentioned. She seemed surprised that I asked about babysitters, saying, "Oh my, yes, you need something like that!" She couldn't believe that we never leave him with a babysitter, never go out without him. She said she never considered how difficult it would be to leave a kid like Nathan with a sitter.


She seemed to really care about Nathan and how all this affected him. "Can you imagine what it must be like to live in his world...?" she asked me. I try. God knows I try. I can't always understand where he is coming from, but I can usually sense how important something is to him, even though it makes little sense to me WHY it should be so important. My heart aches for him, when I see how people treat him, and when I see how hard some very simple things can be for him.


We also talked about how he is often bullied, and how this weekend the neighbor kids tried to use a collapsible basketball hoop as a catapult, and Nathan as the ammunition. We thought they broke Nathan's tailbone. I think now that maybe it was just bruised, because he is healing rapidly, but sometimes he shows little reaction to something I know must be very painful. He has had ear infections that burst his eardrums, without ever complaining about feeling ear pain.


I've been trying to prepare dh for the possibility that Nathan has Autism or Asperger's. He was angry and resistant at first, but now he seems to be a bit more accepting. We'll see.


I'm heartbroken. And relieved. And scared. I know this can all be a positive thing, but it's hard not to feel scared when you aren't really moving forward, but just waiting for an evaluation summary. I was so excited when the social worker said she would talk to the Autism Team to see what resources she could find for us. OMG, that was the first time I've seen light at the end of the tunnel. (I didn't even know there was an Autism Team!) I haven't been able to find support groups in the area, but the social worker thinks she can help me to connect with advocates and such. I've tried to figure out what doctor to take Nathan to. His ped is useless for this stuff. He's fine for an ear infection or a strep throat, but this is beyond his scope I guess. When I try to ask him questions about Nathan's meds, or voice my concerns about his side effects, the doc just tells me "don't worry about it." Excuse me, but my son is having painful migraines, and you tell me not to worry?? Do you have children of your own?? sigh.


Anyway, I'm really tired. I've been on the verge of tears all day, and on the verge of cheering. Yeah, confusing, I know. Silly me, I still want people to tell me that all of this is just a lack of maturity, and Nathan will grow out of his "issues." But I also want to cheer because maybe there will be people out here who know what we all go through with Nathan, and may have ideas for me, or doctors to recommend, or teachers and caregivers to recommend. Geez, to even imagine that there could be help for us seems almost too good to be true.


On another positive note, I did get Nathan into the Park District's day camp for the summer. It's expensive, but it's a good program. He did this a couple years ago, and they were fabulous with him. They assigned a college student (special ed) to shadow him all day, and really helped him to cope with the new environment. That was for free, too. It was the very fist time I had a teacher or caregiver look at my son like a person and not like some kind of demon child. People usually treat Nathan like he just needs a good swift kick in the ass, instead of trying to see what a great kid he is. They also treat me like some kind of awful mother, who can't control my son. Anyway, I'm just thrilled we got him in the daycamp. This place could be a real good experience for him, at a time when he really needs it.


I'm so worn out.

Back To Work

Entry for February 15, 2006,
I went to that meeting today. Dh and I were both pleasantly surprised at how well things went. It was mostly informative. Nathan's teacher did most of the talking, and she was obviously acting as his advocate. She pressed the fact that he is a good boy, and not malicious or intentionally bad. She knows he can't control his outbursts, but they result from his being overcome by too much stimulation to his senses. She also spoke of how bright he is, and that his academic test scores don't reflect his true functioning level, and how unfair that was to Nathan. They are scheduling a battery of tests, that will take place over the next 60 days (that's 60 school days). That will pretty much take us to nearly the end of the school year.

We all went out, so dh and I could kind of recover from the stressful meeting, and to talk about how we felt about things. Dh and I agreed that everyone seemed to have Nathan's best interests at heart, and that if things go as they have been described to us, we might have some answers, some direction, and some help. We're both cautiously optimistic. (It's still hard to trust, but it helps to see that all of this was handled so much more compassionately than anything we have dealt with previously).

When we got home, I had an interesting message on my voicemail.

Turns out, there was a message that a place I interviewed with wants to offer me a job. Looks like I'm going back to work.