Last night we had a picnic in the park for the NW IL Autism Support Group.
The weather had been very spotty all day, with strong thunderstorms, followed by lovely sunshine, followed by more storms. So as I got ready to leave work, and saw huge black clouds hanging off to the north (and the direction of the park and home), I was not sure if it would take place. Dh called me at work and said it was pouring there. I shot off an email to the group leader, and asked if the picnic was still a go.
For a dish to pass, I made Nathan's favorite baked beans early in the morning, so all I had to do was heat it up. But as I dogged raindrops on the way home, I wasn't sure that would even be necessary.
A little while after I got home, I got a phonecall from the group leader, asking where the heck I was. LOL! I explained that the food was still heating up, but I would be there shortly. (I think she forgot that I work late this time of year.) I'm glad she called. By that time, the weather had cleared, and the sun was peeking out again.
By the time we walked to the park, it was gorgeous outside. There were quite a few people there, and Dh accompanied me. That was probably a surprise to the rest of the group. They had never met him, LOL! He went off with Nathan to play a little ball, and I went to chat with the other moms.
With my late work hours, by the time I arrived they had all pretty much eaten. But we got to have a pleasant chat, and the kids got to socialize some. Nathan even hit two homeruns, in an informal baseball game!
Nathan started to act funny, not long after arriving. Dh said he thought he might be sick. He turned down an offer of money for the ice cream man, and that's unheard of. I put a hand to his forehead (you know the back of a mom's hand is MUCH more accurate than a doctor's thermometer) and realized that he was ICE cold. Very odd, considering it was quite warm outside. He had goosebumps too, and at times shivered. We all tried to encourage him to drink something, but he wasn't having it. I tried to pursuade Dh that we needed to get Nathan home, but he didn't really realize how bad he was until I got him to feel for himself. Once he felt that icy cold forehead, he agreed, and we packed up to leave.
Nathan was reacting to the heat, and too little to drink. Once we got home in the air conditioning, and he wasn't running around, and I pushed some drinks at him, he started to bounce back.
Ah well. Even though we weren't there long, Nathan thought it was pretty neat. Someone gave him a glow-in-the-dark bracelet, and he was too out of it to know what it was. He tried to leave it behind, but I knew better and grabbed it. When he went to bed, I slipped it onto the arm of his teddy bear (the one he got at the Christmas party). Nathan got a huge kick out of that!
In the middle of the night, he got sick to his stomach, but I kind of expected that. (Smart kid used a bucket, so I didn't even have a bed mess to clean up.) He has often gotten an upset stomach with fevers and with overheating, so I knew it was coming. But there was no sign of his being ill this morning. He was right back to his old self. But I kept him drinking all day, to be safe.
I wish we could have been there longer last night, but I had a nice time while it lasted.
Saturday, June 21, 2008
Camp, Week 1
The first week of camp is over, and it was mostly a success. The second day was bumpy, but only a mini melt, not a full blown neuclear meltdown. Considering he had been so excited to go that he had very little sleep for a couple days, coupled with all the change and unfamiliar circumstances, it's not a big surprise that he had trouble.
However, there were two things that really struck me about the past week.
1. Nathan came home on the first day, and casually described what they did for the day, including telling me the name of the one-on-one aide, AND the name of a kid that he was becoming friends with. Now, keep in mind here, Nathan doesn't remember names. Never has. He has gone to school with kids for years, and except for one or two exceptions, he has never even bothered to learn anyone's names. For him to come home, after ONE day, and know not one but TWO names, is monumental!
2. One of the leaders asked me about Nathan's social skills, and filled me in about how Nathan has been playing very well with the other kids, has been inviting other kids to play board games with him, and for the kids that didn't know the game he very patiently explained and taught the other child how to play. She said he was displaying very good social skills! Woah! That's GREAT news! I knew at school they had seen some marked gradual improvement in this regard over the course of the school year. But to have someone who doesn't know him consider him to have good social skills is really amazing. I know they are still probably not what you would see in an NT child - the leader was probably speaking in relative terms, but it's still really cool. Two years ago, Nathan was known for going out to recess and just standing well away from the other children, watching. He didn't play, he didn't interact. At all. At the end of one year, the school was very excited because a group of kids invited Nathan to join in during a game of football on the playground, and he jumped at the chance. He had never done that before at school. At the end of two years, I was excited because he had been learning the names of his really close friends, kids he'd been in class with for several years. And he would have what I would call a very strong friendship with one boy. Big stuff. But I never would have guessed that he'd be inviting kids to play, learning their names, or acting in a mentoring fashion.
He just seems to be blossoming in the past year. There are so many big advancements, that I have to believe it's more of a matter of something "clicked" inside, rather than it was the result of any one person, program or environment. It carries over to too many things. Like the fact that he's now able to be left alone for short periods of time, and he's volunteering to help around the house and around the yard, and he's getting better about showing some self awareness and self control. He's doing better with academics (at least making an occassional effort to listen and participate in class).
This is the Nathan I expected to see at school. Actually, I expected him to be in the top of his class, but I expected him to be participating, friendly, more in control, and happy. I've been so frustrated because I know he has it in him, but for some reason, they can't seem to provide the environment or the atmosphere for him to thrive. Instead, it seems to be all about control, discipline, behaving...
If only we could get a teacher with patience and flexiblity! Someone who won't judge him as a spoiled rotten brat the first time he has a melt. Someone who won't draw lines in the sand with him. (Hey, I can HOPE, can't I?)
Right now, in camp, his one-on-one is very young. A college student, I assume. But she is very upbeat and cheerful. An awesome personality to work with Nathan. She instictively knew to give him time and space when he was upset, and backed off when she could see her attempts to communicate were frustrating him. She sends me notes, telling me what a funny and good kid Nathan is, and how he makes her feel good about herself, too. And that was at the end of the day that he melted. Most adults write him off after a bad day, and assume he's a bad child. Not this girl. Thank goodness.
I know it's early yet, but I have to relish this. I love being able to drop him off for the day, and know he's going to have fun. Not just not melt down, but actually enjoy himself. And I love not having to fear for him, that someone will respond to his frustration with anger or restraint or humiliation. Instead, for at least a while, I can feel like any other mom. I can smile and hug him before he goes off for the day, and not feel dread. And I can come home from work and listen to him excitedly chatter on about playing games and finding neat rocks.
I love summer!
However, there were two things that really struck me about the past week.
1. Nathan came home on the first day, and casually described what they did for the day, including telling me the name of the one-on-one aide, AND the name of a kid that he was becoming friends with. Now, keep in mind here, Nathan doesn't remember names. Never has. He has gone to school with kids for years, and except for one or two exceptions, he has never even bothered to learn anyone's names. For him to come home, after ONE day, and know not one but TWO names, is monumental!
2. One of the leaders asked me about Nathan's social skills, and filled me in about how Nathan has been playing very well with the other kids, has been inviting other kids to play board games with him, and for the kids that didn't know the game he very patiently explained and taught the other child how to play. She said he was displaying very good social skills! Woah! That's GREAT news! I knew at school they had seen some marked gradual improvement in this regard over the course of the school year. But to have someone who doesn't know him consider him to have good social skills is really amazing. I know they are still probably not what you would see in an NT child - the leader was probably speaking in relative terms, but it's still really cool. Two years ago, Nathan was known for going out to recess and just standing well away from the other children, watching. He didn't play, he didn't interact. At all. At the end of one year, the school was very excited because a group of kids invited Nathan to join in during a game of football on the playground, and he jumped at the chance. He had never done that before at school. At the end of two years, I was excited because he had been learning the names of his really close friends, kids he'd been in class with for several years. And he would have what I would call a very strong friendship with one boy. Big stuff. But I never would have guessed that he'd be inviting kids to play, learning their names, or acting in a mentoring fashion.
He just seems to be blossoming in the past year. There are so many big advancements, that I have to believe it's more of a matter of something "clicked" inside, rather than it was the result of any one person, program or environment. It carries over to too many things. Like the fact that he's now able to be left alone for short periods of time, and he's volunteering to help around the house and around the yard, and he's getting better about showing some self awareness and self control. He's doing better with academics (at least making an occassional effort to listen and participate in class).
This is the Nathan I expected to see at school. Actually, I expected him to be in the top of his class, but I expected him to be participating, friendly, more in control, and happy. I've been so frustrated because I know he has it in him, but for some reason, they can't seem to provide the environment or the atmosphere for him to thrive. Instead, it seems to be all about control, discipline, behaving...
If only we could get a teacher with patience and flexiblity! Someone who won't judge him as a spoiled rotten brat the first time he has a melt. Someone who won't draw lines in the sand with him. (Hey, I can HOPE, can't I?)
Right now, in camp, his one-on-one is very young. A college student, I assume. But she is very upbeat and cheerful. An awesome personality to work with Nathan. She instictively knew to give him time and space when he was upset, and backed off when she could see her attempts to communicate were frustrating him. She sends me notes, telling me what a funny and good kid Nathan is, and how he makes her feel good about herself, too. And that was at the end of the day that he melted. Most adults write him off after a bad day, and assume he's a bad child. Not this girl. Thank goodness.
I know it's early yet, but I have to relish this. I love being able to drop him off for the day, and know he's going to have fun. Not just not melt down, but actually enjoy himself. And I love not having to fear for him, that someone will respond to his frustration with anger or restraint or humiliation. Instead, for at least a while, I can feel like any other mom. I can smile and hug him before he goes off for the day, and not feel dread. And I can come home from work and listen to him excitedly chatter on about playing games and finding neat rocks.
I love summer!
Wednesday, June 18, 2008
Sunday, June 15, 2008
Let's Go For a Drive
Father's Day brought another milestone for my little boy. Hm. Not so little anymore.
Dad suggested going go-carting. This must be a guy thing, because the thrill of this event just eludes me. But Dh loves it, and Nathan loves it, so off to the go-cart track we went.
I did try this activity. Once. I am not smitten with it the way my guys are. In fact, I thought it had pretty much zero fun factor. So I retire to the picnic benches that line the track, and dutifully cheer my son on from a safe distance.
This time was different though. You see, up until now, Dh and Nathan have shared a go-cart. It was a father-son activity, with Dad driving and Nathan riding shotgun. They would sit side by side, with Nathan holding on to a non-functioning steering wheel. This time, however, we asked the tired looking woman behind the glass at the ticket window how tall Nathan had to be, in order to drive his own go-cart.
She pointed behind us to a post with a line painted on it. Nathan flew to the post and put his back against it, and tried to stretch himself to his full height, and then some, if he could possibly manage it. He didn't need to stretch. He had grown several inches since last year, so he easily passed the minimum height requirement with over an inch to spare.
Nathan was SO excited! He dashed off, with Dad tailing, to find his own go-cart to drive. I had snuck a camera into my purse, just in case, and got it ready. Nathan jumped behind the wheel of the go-cart of his choice, and Dh took the go-cart just behind him in line.
I marveled at Nathan's fearlessness. I don't think I would have even wanted to go alone at that age. I was always a bit of a scaredy cat as a kid. (Sometimes as an adult, too.) But he didn't hesitate. And that's a big deal to me, because I've seen him unable to put one foot in front of the other, just because he was uncertain about what to do. Not this time, though. This time, he jumped right into the deep end.
By the end, he was cutting people off, passing other cars right and left, and yelling, "You're not gonna pass ME!" at some poor adult that dared to creep up on him. It was funny, and encouraging all at the same time. What a wonderful thing a bit of self confidence is.
At times he was so determined and intent, that his face just exuded his singlemindedness. And at other times, he was laughing at the thrill of the speed and the competitiveness.
I could only watch from the stands, and enjoy this rite of passage. And take a picture, of course. I delighted in his freedom, and his newfound maturity, and his pure joy.
I don't think I'll look at go-carting the same way again. Now it will always warm this precious memory in my heart.
Wednesday, June 11, 2008
A Milestone
We hit a real milestone yesterday! We left Nathan alone for the first time.
It wasn't for long, of course. We just ran a short errand. But we wanted him to start getting used to being alone, and being more independent. We figured we'd leave him alone for little short trips to the store and such, and work up to longer periods of time, over time.
Of course, Mom stared at her cell phone the whole time. But even though my paranoia was in high gear, I was also excited for him, too. He wasn't worried in the least, and thought it was pretty cool that we just up and left him alone like that, with no warning. He was all grins. And wanted to know right off the bat when we were going to do that again, lol! And I felt silly for being paranoid over nothing. He was ready for this long ago. Mom was the only one who wasn't. Maybe next time I can pry my fingers off my cell phone, and quit letting my imagination get the best of me. (I didn't call him, I just held onto it, just in case it rang... I know, I'm a nut.)
I'm so proud of him! He's been really making huge strides in his independence. He is really growing up. eek!
But it was a really neat thing for me - spontaneity! It's been a long time since I just up and ran out of the house without making arrangements. Without thinking that I can't do something, because I have responsibilities. Wow, it's amazing what a thrill a little thing like that is! It was very freeing. I felt younger, lol.
Now I'm not so sure who hit a milestone here. Nathan seemed more than ready for it. Maybe it was Paranoid Mom who really hit the milestone, hmm?
It wasn't for long, of course. We just ran a short errand. But we wanted him to start getting used to being alone, and being more independent. We figured we'd leave him alone for little short trips to the store and such, and work up to longer periods of time, over time.
Of course, Mom stared at her cell phone the whole time. But even though my paranoia was in high gear, I was also excited for him, too. He wasn't worried in the least, and thought it was pretty cool that we just up and left him alone like that, with no warning. He was all grins. And wanted to know right off the bat when we were going to do that again, lol! And I felt silly for being paranoid over nothing. He was ready for this long ago. Mom was the only one who wasn't. Maybe next time I can pry my fingers off my cell phone, and quit letting my imagination get the best of me. (I didn't call him, I just held onto it, just in case it rang... I know, I'm a nut.)
I'm so proud of him! He's been really making huge strides in his independence. He is really growing up. eek!
But it was a really neat thing for me - spontaneity! It's been a long time since I just up and ran out of the house without making arrangements. Without thinking that I can't do something, because I have responsibilities. Wow, it's amazing what a thrill a little thing like that is! It was very freeing. I felt younger, lol.
Now I'm not so sure who hit a milestone here. Nathan seemed more than ready for it. Maybe it was Paranoid Mom who really hit the milestone, hmm?
Monday, June 9, 2008
PT Progress
I went to PT today, and it was my last visit before I return to the orthopedic doc tomorrow. So the therapist ran a bunch of tests to see if my mobility has improved.
I got my arm almost all the way up when I raised it straight out in front of me, and up over my head. Big improvement when I couldn't raise it more than 90 degrees in the beginning.
I also raised my arm straight out at the side up quite a bit. Not all the way up over my head, but still, a big improvement. In the beginning I couldn't raise it over 90 degrees either.
In my grip, there was a big improvement, too. I went from 40 pounds to 80 pounds! She was real surprised with that. Pleasantly surprised.
See, I DO do the excercises at home!
She said she suspects the doc will keep sending me to PT with this kind of progress.
Progress. That's such a comforting word. I guess I get unrealistic expectations, and I hope that I'll be all fixed and back to normal after a few weeks, and I let myself get discouraged when that doesn't happen. So instead, right now I'm kind of celebrating inside. Okay, so maybe I don't have the shoulder of my youth, but at least I have a heck of a lot more movement and a heck of a lot less pain than I did a month ago. And I worked hard! So I deserve a little celebrating!
So that's my little mental pat-on-the-back for the day, LOL!
I got my arm almost all the way up when I raised it straight out in front of me, and up over my head. Big improvement when I couldn't raise it more than 90 degrees in the beginning.
I also raised my arm straight out at the side up quite a bit. Not all the way up over my head, but still, a big improvement. In the beginning I couldn't raise it over 90 degrees either.
In my grip, there was a big improvement, too. I went from 40 pounds to 80 pounds! She was real surprised with that. Pleasantly surprised.
See, I DO do the excercises at home!
She said she suspects the doc will keep sending me to PT with this kind of progress.
Progress. That's such a comforting word. I guess I get unrealistic expectations, and I hope that I'll be all fixed and back to normal after a few weeks, and I let myself get discouraged when that doesn't happen. So instead, right now I'm kind of celebrating inside. Okay, so maybe I don't have the shoulder of my youth, but at least I have a heck of a lot more movement and a heck of a lot less pain than I did a month ago. And I worked hard! So I deserve a little celebrating!
So that's my little mental pat-on-the-back for the day, LOL!
Saturday, June 7, 2008
Summer Begins
Well, PT has been going well, I guess. I've got a lot more movement in my arm, and can even reach a little behind my back. Not much behind, but still an improvement. I still have the really bad pain when I lift up, out or behind, but it isn't constant. The lesser pain has pretty much disappeared, like the constant throbbing. (I think that had more to do with the increase in arthritis drugs than PT, though, but I could be wrong.) I've got the use of my left arm back, which is very good. Before, I felt like it was a useless appendage, but now I can use it somewhat. So that helped. I must admit, however, that I'm a little disappointed that I haven't seen more significant improvement. Maybe it's just a matter of more time and therapy. Or maybe it's not going to get much better. I'm not sure which. I go back to the orthopedic doc this week, so maybe I'll get a better idea after that.
Nathan has had a meltdown at school. For some reason, they didn't see fit to call me, and called Dh instead. Later, I found out from Nathan that he had been playing a card game in class with some kids at his table, and they started to make fun of him for losing. He got frustrated and lost it. The teacher asked Dh to find out what he got so upset about - they had no idea. I had to wonder why they didn't know. The teacher said that she was with another student, and the para was not present either. Hm. How come? That para is his one-on-one aide. Perhaps she would have been able to stop the other kids from making fun of him and prevented the melt. She was not around when the game was being played. She should have been. I didn't bother reporting back to the teacher why the melt occurred. They usually come to their own conclusions anyway, and don't accept what I tell them. And when there was only a couple days left in school, explaining a meltdown seems a little useless anyway. Hell, if they haven't figured out by now that he has a hard time with perfectionism and comptetition, they aren't going to figure out. Sigh.
Nathan has been SO helpful around the house lately. He comes up and offers to help me do dishes, or put away laundry, or whatever. He's even been doing yard work; weeding, trimming trees, mowing, etc. It's been an enormous help to me, when I struggle with the shoulder pain. And it's really neat to see him show empathy and concern for others. That's a huge step up for him! I'm really proud of him.
He's also been doing better in school. He is showing a lot more creativity when writing! I was so excited to see that. I knew he had it in him, because I've helped him to do creative writing assignments before. I usually had to help him get his ideas together or come up with a topic, or to help him get "unstuck" from writer's block. He had great ideas, but he just didn't seem to know what to do with them, to get them on the paper. So I'd ask him basic questions. (What kind of story do you want to tell? Oh, that sounds interesting! What do you want to happen? Okay, what's going to happen first? How will you finish it? This is a really neat story; what do you want to call it?) He just needed a little confidence, I think. Some nudging. In his head, he thought he couldn't write a story, or an essay. But once he found out that all he had to do is come up with an idea, and put it in some kind of order, he realized it wasn't so hard after all.
He used to melt down when they gave him a writing assignment. Then he'd come home and we'd have the assignment done in no time. I wondered why the school had so much trouble with this? Couldn't they see he was just scared? Lacking confidence? He just needed a little bit of guidance. Not even a lot. And here, we'd have FUN writing stories. Sometimes he was disappointed when I said it sounded like he had a good stopping point, and should end the story there. He wanted to just keep going. (Maybe Mom's love of storytelling has gotten into his bones?) :) The teacher thought he was just being lazy, and trying to get out of work. But I knew better. Nathan is far from lazy when it comes to learning. He's just kind of shy about some things. And that gets him frustrated. He wants to do it, but he doesn't think he can, and this gets him very upset. Too bad this was lost on his teacher. She might have enjoyed the results as much as I do.
Nathan had a particularly bad day at school. His teacher said he wasn't productive, and also refused to do a writing assignment, which she was sending home. When I read this in her email, I knew that when I got home from work, I'd be working with Nathan on that assignment. I can't tell you how thrilled I was to get home and find out that he not only did the assignment (all by himself!), but it was a really cute story about what he would do if he was only an inch tall. It was all done, it was done independently, and it was entertaining. And he ENJOYED doing it! Now why couldn't that have happened at school???
Thursday was the last full day of school. They go back on Monday for a couple hours, and then he is done for the year! HOORAY!!
I am so relieved to have him out of there for the summer. I try to be optimistic about next year, but it's hard. I haven't been impressed with the way the school deals with autism, that's for sure. I hope he at least gets a patient teacher next year. Not one who rushes to (negative) judgement. That would help a lot.
I'm also not looking forward to the daycare situation for the summer. Next week will be stress free, with Grandma & Grandpa caring for him, and Dh taking time off of work for a couple days, too. But after that, back to public daycare. Yikes. I sure hope that goes well. Last year, it was up and down. He had a great one-on-one aide, that seemed to have a real good feel for when Nathan gets upset and how to combat that. No meltdowns! But they often weren't very attentive, and Nathan got bullied a lot, and ignored by the staff at times. At one point, he decided enough was enough and tried to walk home. He nearly got to an incredibly busy street before the staff discovered that he was missing and went after him. I sure hope this new arrangement will be better than that. But I've lost my blind optimism when it comes to daycare.
But I'm still in a celebratory mood. No judgemental teachers for the summer! YIPPEEEE! No homework supervision! No IEP meetings! No threats of felony arrest for digital notetaking! Ahhhhhh, peace! At least for the next week. :)
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