Our uneventful Spring Break is over and the kids started back to school yesterday. I’ve always wondered why schools in our area have such an early Spring Break…the weather is almost never decent and this past week was no exception. If it wasn’t cold, it was rainy. Thursday was probably the nicest day of the bunch so we went to the zoo. It was a little cool but the sun was shining and oddly, the zoo wasn’t packed with other Spring Breakers. I guess most people go out of town, but we’re saving that for the stifling heat and humidity of August in Florida. You never know…it could be an unseasonably cool eighty-five degrees in Orlando in August. That’s what we’re hoping for.
The transition back to school went okay for Thomas yesterday but his teacher wanted to speak with me about some trouble he had today. The teacher lets the kids pick jobs every Monday such as line leader, book helper, weather helper and so on. One of the jobs is “schedule helper” and though Thomas always vies for this job in particular, it is one of the more popular ones and he seldom gets it. The schedule helper tends to the picture schedule up on the wall of the classroom. When the kids have completed one of the schedule items, the helper flips that item over to indicate that it’s all done. Thomas has been using a schedule like this since he was three and started developmental preschool. The problem is that he is somewhat obsessed with it. If the schedule helper is less-than-diligent about flipping completed items over, Thomas goes to the schedule to do it himself. I’m a little disappointed because I thought that the goal was to get Thomas away from a picture schedule altogether, but the teacher says that a lot of the other kids in class benefit from it as well.
Today, the schedule was messed up somehow. “Exercise” was before “Calendar” or something and Thomas wanted to change it. Mrs. H. told him that she knew the schedule was wrong but that it wasn’t his job to change it. He kept trying to tell her that it was wrong and I guess (sigh and extreme embarrassment…) he yelled at her that she wasn’t listening to him. She was stern with him and told him to sit down. She also warned him that if he touched the schedule again, he would be moving his card to yellow. This whole green-yellow-red thing is an amazing motivator for Thomas. Once she warned him about the card, he sat down and started crying. He did recover and was able to go on with his day (which is great) but I feel bad that he had a rough time. After school, I explained that I wasn’t angry with him and tried to tell him that everyone has bad days sometime. Thomas argued about this with me and told me that I should be mad at him and that I should make a mad face! I told him that I had a bad day at work on Sunday (and that my general manager would probably holler at me today as a result of it) and that it would be okay and maybe the next day would be better…that if every day was great and exactly the same, life would be boring. Remarkably, this line of reasoning made more of an impression on Thomas than anything else I said. He’s recovered from school nicely and is eating noodles dipped in pizza sauce now, so all appears to be well. Another factor that might have had something to do with his trouble today was that Hayley said she wasn’t feeling well this morning so we didn’t go in to help like we normally do on Tuesdays. Ah, well. I shouldn’t let his trouble get me down either. I should listen to my own advice.
Don’t worry about my bad day at work, either. One mistake I made was relying too heavily on the technology the restaurant uses (and which normally works perfectly) and the other mistake was that I didn’t card a gentleman who appeared to be every bit of thirty-five years-old but was really twenty-two. Okay…lesson learned. I’m carding anyone who appears to possibly be under fifty and that should take care of that. They might write me up or something. I think I’ll live to fight another day. The other assistant manager definitely didn’t think I’d be fired, but can you imagine? I’ve never been fired from a job (or even officially reprimanded) in my life and to have to deal with this while waiting tables…honestly. The upside is, of course that I’ve gotten a good start on our Disney nest-egg and every time I have to go into the restaurant kitchen to make yet another “fresher” pot of decaf for the persnickety old ladies at table such-and-such, or fetch a whole plate of lemons for the people in the corner booth who are apparently intent on making their own lemonade out of the free water, lemons and Splenda packets we keep on the tables, I just think of my kids and my husband at Disney World, smiling from mouse-ear to mouse-ear.
I wonder what “happy place” I’ll find after Disney is over to keep me going with this restaurant gig. The kids are fine with me working but I think that the adjustment is getting to Jonathan a bit. He’s exhausted most nights when I get home and I picked up a shift for tomorrow night – normally a night off – and I’ll be staying past closing so everyone will be in bed when I get home. I can tell that it’s rough for him to come home and play tag-team with me. One day Jonathan was late getting home from work and I stood in the doorway, waiting to see his truck come around the bend. When I spotted him, I got into my car and we blew kisses to one another as he pulled in and I pulled out of the driveway.
We’ve been so busy that I just haven’t had the energy to write lately. At night, I just want to hang out in front of the TV or escape into the world of Harry Potter for a while.
Last week was very busy for our family. Thomas had that videoEEG on Wednesday and Thursday so he missed school those days. He was actually very good for the test part which consisted mainly of just hanging out. The hook-up and un-hook was very traumatic for us and Thomas especially. Jonathan had to hold him down while the EEG technician super-glued twenty-four leads to Thomas’ head; each lead taking approximately one and a half minutes from start to finish. It was awful. Thomas was freaking out, and the nurse who was putting these things on Thomas seemed extremely frustrated with him. He kept screaming “Ow! It hurts! Mommy, help me!” He certainly knows how to play his mom! The “Mommy, help me!” thing went on for quite a while. I cried intermittently. But the nurse, despite Thomas screaming about how much it hurt, kept telling Thomas that it didn’t hurt, there was no “ouch,” no boo-boo, etc. I was getting mad! How does she know how that super-glue and air-gun combo feels to Thomas? No, there weren’t sharp needles and certainly nothing that would hurt an average person, but to Thomas, that air-gun thing and the acrid smell of the glue might have been torture.
During the testing part, especially after hook-up on Wednesday, Thomas was really good. Because it was a videoEEG, Thomas was on camera the whole time. A nurse/technician was in the room with us from beginning to end making sure that the camera was pointing at Thomas every second (except in the bathroom). He stayed on his bed most of the day and was very well-behaved. Nice volunteers kept coming in to bring toys and movies for Thomas and he was very pleased to learn that this whole test thing included all the chocolate ice cream he could eat. And he ate plenty. Whenever he seemed to be getting restless or antsy, we’d run to the freezer and get a little ice cream cup. It worked really well. He had ice cream with every meal and for every snack.
During the night on Wednesday was the really important time for the test since it is Thomas’ sleep problems that brought us to this point initially. We were not allowed to give Thomas his sleepmedication, so he was up until 11:30 p.m. He got up a couple of times in the night. He tried to crawl into my recliner at 4 a.m. but it was too small for both of us, so I got into his hospital bed with him. We stayed there until he awoke at 6:30 a.m. That was when his breakfast came! Is it just me, or is 6:30 in the morning way too early for food service employees to be bringing clattering trays of lukewarm food into children’s hospital rooms? Anyway, that’s what woke Thomas up.
In addition to keeping the camera trained on Thomas, the attending technician also kept a log of Thomas’ activity every few minutes or so. When we woke up on Thursday morning, I looked at the log and noticed that the computer recorded two “events” during the night. One was at 12:30 a.m. and the other was about two hours later. These are obviously neurological events, so I’ll be eager to hear what the doctor has to say about them. We have to wait two weeks for the doctor to review the test and call us back.
While Thomas was being really good on Wednesday, Jonathan’s mom came to see him. Thomas sat in his bed and talked for nearly two hours, nonstop. It was exhausting for us to listen to, but it was so funny too! Jonathan finally realized what was going on with Thomas; since he was tethered to a machine and unable to go very far, he was getting rid of all his energy through his mouth. He would not stop, I tell you! It was really funny and interesting. I knew Jonathan was right…I couldn’t believe that Thomas was being as still and well-behaved as he was, yet his body had to find some way to expend the pent-up energy. Thank goodness he decided to talk it out.
The frustrated nurse came back again on Thursday to take the leads off Thomas’ head, and this experience was almost as horrible as putting them on. They put mineral oil or some kind of spirits on his head to dissolve the glue (non-acetone nail polish remover, I think) and Thomas was not having any of that. He freaked out again, but at the end of it the leads were off instead of on. We rinsed his head and Jonathan took him to the play room down the hall while I waited (and waited and waited…why are hospitals so slow to discharge patients?) for the nurse to give me discharge instructions. Every time I have been in the hospital, I seriously consider just walking out after the doctor gives me permission to go home. What were we waiting for? Thomas was not sick, not post-operative and had no wounds or dressings or fevers that needed care …why do we have to wait forever to be officially discharged?
Of course we didn’t just walk out. We waited around for the very important instructions that told us that Thomas is on a “normal” and unrestricted diet (knew that) and can resume normal activity (knew that, too). Thomas was very glad to be home and just this weekend got rid of the rest of the glue in his hair. I’ll make sure to let everyone know about the results when we receive them.
Thomas and Hayley had a fun weekend! It started on Friday night when the Cubs clinched the National League Central division title! Woo-hoo! My sister and her fiancé came over to watch the game and we had a great time. Saturday, my mother-in-law picked the kids up and took them to her friends’ ten-acre property for the big Hayride and Bonfire Party that they have each year for everyone’s grandkids. Thomas and Hayley went with their cousin and Jonathan’s cousin’s son. That meant that Jonathan and I had some time to ourselves to remember what it was like before we had kids. We didn’t do much. We bought a movie at Target and brought it home to watch. We baked an apple pie and I did a lot of painting (we’re re-painting most of the rooms in our house). Very exciting, I know. But it was so quiet! It was so peaceful! Then the kids came home this afternoon just as the Bears were officially losing the game against Detroit and thus ended both the quiet and the peaceful. Especially for Jonathan. I never realized that a football game, either won or lost, could so greatly affect the general atmosphere in our home. So alas! Another week of grumbling and head-shaking. Thanks for nothing, Bears!
Thomas’ teacher called us yesterday. She mentioned that Thomas is the highest functioning child in her class as far as language is concerned so she wondered if it would be okay if he spent some time in another classroom with kids who can help him learn some of the nuances of social language. Apparently, there’s not a lot of talking amongst the kids in Thomas’ class and his teacher (and the principal, with whom this was discussed) wants to challenge him a bit more and help him really progress this year. I was very happy to hear that from her since I’ve been a little disappointed in Thomas’ curriculum so far. The first week was all about colors. Great, but Thomas already knows his colors. The next three weeks are about shapes. I’m a little more on-board with that, since Thomas could use practice drawing shapes. But still, he knows a lot of shapes. I don’t really want this year to be a review for Thomas; it has to be a little more challenging so that we can really prepare him for kindergarten. I never really understood the reasoning behind Thomas’ class-placement this year anyway. There are no other autistic children in his class, but there are at least two kids with Down Syndrome and other varying disabilities. I’m not sure what this means. I know that Thomas is one of the oldest in his class, but I don’t really understand anything about why this class was chosen for Thomas. Duh…maybe I should ask!
So Thomas will go to spend play time in another teacher’s class just a couple of times a week at first. Depending on his response, they may take him there more often. I’m very interested to see how that goes and if it helps Thomas with social language skills. His teacher said that the “demographic” in the other classroom is mostly kids with slight to moderate language delays. I’ll make sure to let everyone know how Thomas responds to this new routine.
I was really dreading the videoEEG thing, but now that it’s over I feel like things are calming down a bit. The first half of the week is usually a little hectic for us with Hayley’s dance class and Kid Rock. We’ve been doing okay with the dance class so far; Jonathan has been home by 4 p.m. the last two Tuesdays in a row so my sister Tina didn’t have to come and take care of Thomas for us. We’re having our windows replaced sometime in the next three weeks and I really want to get the air vents and ducts cleaned before winter hits, and the bedroom carpeting…I always feel like I can only have a few tasks on my mind at a time and no more than that or something will have to give. The EEG is off my plate, but depending on the results, there’s a good chance that I’ll have to take Thomas in to see the doctor soon. I can’t really file all of that away until I have the results, if any. If any medical professional says the word “inconclusive” in reference to that EEG, I’ll scream. You’ll probably be able to hear me from there.
It’s been pretty quiet around here lately – not literally of course, but not much has happened in the past few days. Thomas had a pretty good week at school. Mostly “okay” days with a couple “good” days, so we’ll take that as a success. He did a great job helping me with a school project this week. We had to make a “feather” to put on the class turkey. Thomas’ teacher sent a note home with a large piece of feather-shaped manila cardstock with instructions for parents to write a short paragraph about what their family would do on Thanksgiving. The kids were supposed to decorate it with markers or crayons and stickers. I wrote the short paragraph and then Thomas went to town decorating it and coloring it in! Usually, Jonathan and I would end up doing school projects for Thomas because getting him to participate in the activity was difficult and, as far as Thomas could see, pointless. This time I waited until Hayley was in bed for her nap and Thomas and I sat down at the dining room table and he colored the feather with his big, looping circles and dots. He actually sat for a few minutes and did this. I think his willingness to cooperate has a lot to do with his teachers requiring him to complete a few minutes of “art time” during work-time at school every day.
Today was my birthday so we went to Chuck E. Cheese’s. I’d rather take the kids somewhere fun for them than try to drag them somewhere that would otherwise be fun for me, but will end up being a frustrating hassle for all of us. They had a good time, as usual. Thomas lost a little toy car there which made for a difficult departure. We tried to tell him before we went in that he should leave the toy in the car so he wouldn’t lose it. Of course he didn’t listen and ended up losing it. I’m sure some other kid picked it up at the bottom of the slide; Thomas kept sending the car down and sliding down after it. All the way home, Thomas kept saying, “I want the car!” I couldn’t believe how frustrated I was about the whole thing. Talk about being unreasonable; it was just a stupid little car and he has literally thousands at home. Also, whoever picked it up will doubtlessly take better care of it than Thomas did. I was just so irritated that he didn’t understand how it would have been better for him to leave it at home or in the car! Try reasoning with an autistic four year-old! I should know better. We all got over the incident quickly, however.
Thomas is asking more and more questions all the time. A lot of them are repeated from another time, but I still do my best to answer them as plainly as possible. I have the tendency to get a little wordy (no, really?) and explain things to the kids at maybe an eighth-grade level instead of a two year-old level. That will either confuse them to the point where they’re sorry they asked, or it will broaden their vocabularies and encourage reasoning skills - and make them sorry asked. Thomas always starts his questions with, “Hey, Mommy?” It’s so cute. And he waits for me to respond! He’ll keep saying, “Hey, Mommy?” until I say, “Yes, Thomas?” Making sure that he has my attention is a big deal, I think. Before, he would ramble on without making sure that anyone was listening. Now, he prefers a verbal response. Just looking at him isn’t really adequate for Thomas. Really, it’s not adequate for me, either. Jonathan could be looking at me while I’m talking, but a lot of the time he’s got a glazed look in his eye and I can tell I don’t really have his attention. He’s looking at me, but who knows what he’s seeing?
Just a three-day week coming up! We’re going to my mother-in-law’s house for Thanksgiving this year. I hope that Thomas doesn’t get too far out of the school-groove during this four-day weekend. By next Sunday night, I’m sure he will be ready to go back. I know I’ll be ready!
We’ve had an important potty-training breakthrough!
After four days of continually wetting his training pants (actually yesterday he stayed dry at school), I think I’ve discovered the solution: Cars underpants. At Target a week ago, my husband and I were shopping and I saw some Cars movie-themed regular boy’s underwear, and I decided to get them as an added reward for keeping dry. This afternoon, after the third or fourth pair of soiled training pants, I decided to put Thomas in the regular underpants with no rubber pants over them.
At the potty-training workshop at Thomas’ school a couple weeks ago, I remembered that they had mentioned the importance of having your child help clean up after an accident and not making a big deal of it; that mistakes are a part of life and so on. I was thinking about that and finally decided to just try regular underwear and see what happened. I’d like to mention here that I’m no fan of messes, especially ones involving bodily fluids. After the Horrendous Barfing Flu of May ’06, I was ready to rip out the carpeting, buy plastic blow-up furniture and just live on the bare concrete slab until the kids were old enough to give a few minutes warning before some fluid made its way out of their little bodies. So obviously, it was a leap of faith to let Thomas run around in regular, not-especially absorbent underwear.
I went ahead with it, reasoning that maybe the unpleasant sensation of pee-pee running down Thomas’ leg would be enough to motivate him to hold it, and helping me clean up the puddle would be a good lesson for him. So I let him pick out which underpants design he wanted to wear and said a little prayer.
An hour went by, and his pants were still dry. Somewhat skeptical, I looked around in the obvious places for any signs of puddles and found none. I took him to the potty and a steady stream came forth, signaling that he had held it for a while. I praised Thomas profusely and went about my business for a while longer. Another hour went by, and the same dry underpants were still going strong! I took him to the bathroom again where he not only went #1, but also #2! He did have one accident when he crawled into the kitchen over the counter and was then blocked in by the gate we have. My husband and I were sitting on the couch with our daughter when I heard Thomas say, “I have to go pee-pee I have to go pee-pee I have to go pee-pee.” I jumped up to get him, but by then it was too late. He had gone a bit, but there was no puddle; just some wetness on Thomas’ legs. So we took him to the bathroom where we handed him a wipe and he cleaned himself up. That was the end of that. Then my husband took Thomas to the store where he stayed dry the whole time and still didn’t have to go when he came home!
The magic behind all of this is that I think Thomas felt like those padded training pants were diapers. They were bulky around his crotch like a diaper, and they could certainly contain his urine like a diaper. As soon as I put the regular thin cotton underpants on him, they must have felt different, like something you can’t pee in.
So as elated as I am about having found the solution to this problem (or so I think; we’ll see how he does in the days ahead), I’m a little ticked off that I went ahead and spent all of that money on the eighteen pairs of training pants and rubber over-pants. My husband asked how much we spent on all of that and when I told him, he didn’t seem to mind. I think he would have paid a lot more to get this potty-training thing going. Maybe we can use the supplies for our daughter soon.
Thomas has had a better week so far than last week. Yesterday and today were both “good” days. He did have another accident on the playground today, but it was nowhere near the monsoon-level accident on Monday. Thomas has been singing more songs from school too, and our daughter Hayley loves it when Thomas and I sing together.
He’s been telling us more stories about things that happen at school, like who takes him to the bathroom and what they played with in gym class. Sometimes I have to get right in his face to get the answer to a question though, especially if he’s enraptured by the spinning wheels on his cars. Then he’ll answer me very quickly as if to say, “Hey, you’re bugging me! Can’t you see I’m busy here?”
I’ve also been noticing the importance of choice in Thomas’ life. I’m giving him choices more and more often just to see how he reacts, and I think it’s helping him feel like he’s more in control of things, especially the potty-training. We kind of forced it on him, even though we were pretty sure he was ready physically, but asking him what reward he’d like or what underpants he’d like to wear really seem to help motivate him. I’m just a little concerned that he’ll want to wear character underwear when he’s thirty.
Please comment on reasoning or other autism therapy topics.
Twitter
Facebook
By Email
RSS Feed
Please comment on this autism topic.
Scheduling conflict
Mar 31, 2009 by AnonymousOur uneventful Spring Break is over and the kids started back to school yesterday. I’ve always wondered why schools in our area have such an early Spring Break…the weather is almost never decent and this past week was no exception. If it wasn’t cold, it was rainy. Thursday was probably the nicest day of the bunch so we went to the zoo. It was a little cool but the sun was shining and oddly, the zoo wasn’t packed with other Spring Breakers. I guess most people go out of town, but we’re saving that for the stifling heat and humidity of August in Florida. You never know…it could be an unseasonably cool eighty-five degrees in Orlando in August. That’s what we’re hoping for.
The transition back to school went okay for Thomas yesterday but his teacher wanted to speak with me about some trouble he had today. The teacher lets the kids pick jobs every Monday such as line leader, book helper, weather helper and so on. One of the jobs is “schedule helper” and though Thomas always vies for this job in particular, it is one of the more popular ones and he seldom gets it. The schedule helper tends to the picture schedule up on the wall of the classroom. When the kids have completed one of the schedule items, the helper flips that item over to indicate that it’s all done. Thomas has been using a schedule like this since he was three and started developmental preschool. The problem is that he is somewhat obsessed with it. If the schedule helper is less-than-diligent about flipping completed items over, Thomas goes to the schedule to do it himself. I’m a little disappointed because I thought that the goal was to get Thomas away from a picture schedule altogether, but the teacher says that a lot of the other kids in class benefit from it as well.
Today, the schedule was messed up somehow. “Exercise” was before “Calendar” or something and Thomas wanted to change it. Mrs. H. told him that she knew the schedule was wrong but that it wasn’t his job to change it. He kept trying to tell her that it was wrong and I guess (sigh and extreme embarrassment…) he yelled at her that she wasn’t listening to him. She was stern with him and told him to sit down. She also warned him that if he touched the schedule again, he would be moving his card to yellow. This whole green-yellow-red thing is an amazing motivator for Thomas. Once she warned him about the card, he sat down and started crying. He did recover and was able to go on with his day (which is great) but I feel bad that he had a rough time. After school, I explained that I wasn’t angry with him and tried to tell him that everyone has bad days sometime. Thomas argued about this with me and told me that I should be mad at him and that I should make a mad face! I told him that I had a bad day at work on Sunday (and that my general manager would probably holler at me today as a result of it) and that it would be okay and maybe the next day would be better…that if every day was great and exactly the same, life would be boring. Remarkably, this line of reasoning made more of an impression on Thomas than anything else I said. He’s recovered from school nicely and is eating noodles dipped in pizza sauce now, so all appears to be well. Another factor that might have had something to do with his trouble today was that Hayley said she wasn’t feeling well this morning so we didn’t go in to help like we normally do on Tuesdays. Ah, well. I shouldn’t let his trouble get me down either. I should listen to my own advice.
Don’t worry about my bad day at work, either. One mistake I made was relying too heavily on the technology the restaurant uses (and which normally works perfectly) and the other mistake was that I didn’t card a gentleman who appeared to be every bit of thirty-five years-old but was really twenty-two. Okay…lesson learned. I’m carding anyone who appears to possibly be under fifty and that should take care of that. They might write me up or something. I think I’ll live to fight another day. The other assistant manager definitely didn’t think I’d be fired, but can you imagine? I’ve never been fired from a job (or even officially reprimanded) in my life and to have to deal with this while waiting tables…honestly. The upside is, of course that I’ve gotten a good start on our Disney nest-egg and every time I have to go into the restaurant kitchen to make yet another “fresher” pot of decaf for the persnickety old ladies at table such-and-such, or fetch a whole plate of lemons for the people in the corner booth who are apparently intent on making their own lemonade out of the free water, lemons and Splenda packets we keep on the tables, I just think of my kids and my husband at Disney World, smiling from mouse-ear to mouse-ear.
I wonder what “happy place” I’ll find after Disney is over to keep me going with this restaurant gig. The kids are fine with me working but I think that the adjustment is getting to Jonathan a bit. He’s exhausted most nights when I get home and I picked up a shift for tomorrow night – normally a night off – and I’ll be staying past closing so everyone will be in bed when I get home. I can tell that it’s rough for him to come home and play tag-team with me. One day Jonathan was late getting home from work and I stood in the doorway, waiting to see his truck come around the bend. When I spotted him, I got into my car and we blew kisses to one another as he pulled in and I pulled out of the driveway.
Like two Chevy Silverados, passing in the night.
Still on my plate
Sep 30, 2007 by AnonymousWe’ve been so busy that I just haven’t had the energy to write lately. At night, I just want to hang out in front of the TV or escape into the world of Harry Potter for a while.
Last week was very busy for our family. Thomas had that video EEG on Wednesday and Thursday so he missed school those days. He was actually very good for the test part which consisted mainly of just hanging out. The hook-up and un-hook was very traumatic for us and Thomas especially. Jonathan had to hold him down while the EEG technician super-glued twenty-four leads to Thomas’ head; each lead taking approximately one and a half minutes from start to finish. It was awful. Thomas was freaking out, and the nurse who was putting these things on Thomas seemed extremely frustrated with him. He kept screaming “Ow! It hurts! Mommy, help me!” He certainly knows how to play his mom! The “Mommy, help me!” thing went on for quite a while. I cried intermittently. But the nurse, despite Thomas screaming about how much it hurt, kept telling Thomas that it didn’t hurt, there was no “ouch,” no boo-boo, etc. I was getting mad! How does she know how that super-glue and air-gun combo feels to Thomas? No, there weren’t sharp needles and certainly nothing that would hurt an average person, but to Thomas, that air-gun thing and the acrid smell of the glue might have been torture.
During the testing part, especially after hook-up on Wednesday, Thomas was really good. Because it was a video EEG, Thomas was on camera the whole time. A nurse/technician was in the room with us from beginning to end making sure that the camera was pointing at Thomas every second (except in the bathroom). He stayed on his bed most of the day and was very well-behaved. Nice volunteers kept coming in to bring toys and movies for Thomas and he was very pleased to learn that this whole test thing included all the chocolate ice cream he could eat. And he ate plenty. Whenever he seemed to be getting restless or antsy, we’d run to the freezer and get a little ice cream cup. It worked really well. He had ice cream with every meal and for every snack.
During the night on Wednesday was the really important time for the test since it is Thomas’ sleep problems that brought us to this point initially. We were not allowed to give Thomas his sleep medication, so he was up until 11:30 p.m. He got up a couple of times in the night. He tried to crawl into my recliner at 4 a.m. but it was too small for both of us, so I got into his hospital bed with him. We stayed there until he awoke at 6:30 a.m. That was when his breakfast came! Is it just me, or is 6:30 in the morning way too early for food service employees to be bringing clattering trays of lukewarm food into children’s hospital rooms? Anyway, that’s what woke Thomas up.
In addition to keeping the camera trained on Thomas, the attending technician also kept a log of Thomas’ activity every few minutes or so. When we woke up on Thursday morning, I looked at the log and noticed that the computer recorded two “events” during the night. One was at 12:30 a.m. and the other was about two hours later. These are obviously neurological events, so I’ll be eager to hear what the doctor has to say about them. We have to wait two weeks for the doctor to review the test and call us back.
While Thomas was being really good on Wednesday, Jonathan’s mom came to see him. Thomas sat in his bed and talked for nearly two hours, nonstop. It was exhausting for us to listen to, but it was so funny too! Jonathan finally realized what was going on with Thomas; since he was tethered to a machine and unable to go very far, he was getting rid of all his energy through his mouth. He would not stop, I tell you! It was really funny and interesting. I knew Jonathan was right…I couldn’t believe that Thomas was being as still and well-behaved as he was, yet his body had to find some way to expend the pent-up energy. Thank goodness he decided to talk it out.
The frustrated nurse came back again on Thursday to take the leads off Thomas’ head, and this experience was almost as horrible as putting them on. They put mineral oil or some kind of spirits on his head to dissolve the glue (non-acetone nail polish remover, I think) and Thomas was not having any of that. He freaked out again, but at the end of it the leads were off instead of on. We rinsed his head and Jonathan took him to the play room down the hall while I waited (and waited and waited…why are hospitals so slow to discharge patients?) for the nurse to give me discharge instructions. Every time I have been in the hospital, I seriously consider just walking out after the doctor gives me permission to go home. What were we waiting for? Thomas was not sick, not post-operative and had no wounds or dressings or fevers that needed care …why do we have to wait forever to be officially discharged?
Of course we didn’t just walk out. We waited around for the very important instructions that told us that Thomas is on a “normal” and unrestricted diet (knew that) and can resume normal activity (knew that, too). Thomas was very glad to be home and just this weekend got rid of the rest of the glue in his hair. I’ll make sure to let everyone know about the results when we receive them.
Thomas and Hayley had a fun weekend! It started on Friday night when the Cubs clinched the National League Central division title! Woo-hoo! My sister and her fiancé came over to watch the game and we had a great time. Saturday, my mother-in-law picked the kids up and took them to her friends’ ten-acre property for the big Hayride and Bonfire Party that they have each year for everyone’s grandkids. Thomas and Hayley went with their cousin and Jonathan’s cousin’s son. That meant that Jonathan and I had some time to ourselves to remember what it was like before we had kids. We didn’t do much. We bought a movie at Target and brought it home to watch. We baked an apple pie and I did a lot of painting (we’re re-painting most of the rooms in our house). Very exciting, I know. But it was so quiet! It was so peaceful! Then the kids came home this afternoon just as the Bears were officially losing the game against Detroit and thus ended both the quiet and the peaceful. Especially for Jonathan. I never realized that a football game, either won or lost, could so greatly affect the general atmosphere in our home. So alas! Another week of grumbling and head-shaking. Thanks for nothing, Bears!
Thomas’ teacher called us yesterday. She mentioned that Thomas is the highest functioning child in her class as far as language is concerned so she wondered if it would be okay if he spent some time in another classroom with kids who can help him learn some of the nuances of social language. Apparently, there’s not a lot of talking amongst the kids in Thomas’ class and his teacher (and the principal, with whom this was discussed) wants to challenge him a bit more and help him really progress this year. I was very happy to hear that from her since I’ve been a little disappointed in Thomas’ curriculum so far. The first week was all about colors. Great, but Thomas already knows his colors. The next three weeks are about shapes. I’m a little more on-board with that, since Thomas could use practice drawing shapes. But still, he knows a lot of shapes. I don’t really want this year to be a review for Thomas; it has to be a little more challenging so that we can really prepare him for kindergarten. I never really understood the reasoning behind Thomas’ class-placement this year anyway. There are no other autistic children in his class, but there are at least two kids with Down Syndrome and other varying disabilities. I’m not sure what this means. I know that Thomas is one of the oldest in his class, but I don’t really understand anything about why this class was chosen for Thomas. Duh…maybe I should ask!
So Thomas will go to spend play time in another teacher’s class just a couple of times a week at first. Depending on his response, they may take him there more often. I’m very interested to see how that goes and if it helps Thomas with social language skills. His teacher said that the “demographic” in the other classroom is mostly kids with slight to moderate language delays. I’ll make sure to let everyone know how Thomas responds to this new routine.
I was really dreading the video EEG thing, but now that it’s over I feel like things are calming down a bit. The first half of the week is usually a little hectic for us with Hayley’s dance class and Kid Rock. We’ve been doing okay with the dance class so far; Jonathan has been home by 4 p.m. the last two Tuesdays in a row so my sister Tina didn’t have to come and take care of Thomas for us. We’re having our windows replaced sometime in the next three weeks and I really want to get the air vents and ducts cleaned before winter hits, and the bedroom carpeting…I always feel like I can only have a few tasks on my mind at a time and no more than that or something will have to give. The EEG is off my plate, but depending on the results, there’s a good chance that I’ll have to take Thomas in to see the doctor soon. I can’t really file all of that away until I have the results, if any. If any medical professional says the word “inconclusive” in reference to that EEG, I’ll scream. You’ll probably be able to hear me from there.
More cheese, please!
Nov 18, 2006 by AnonymousIt’s been pretty quiet around here lately – not literally of course, but not much has happened in the past few days. Thomas had a pretty good week at school. Mostly “okay” days with a couple “good” days, so we’ll take that as a success. He did a great job helping me with a school project this week. We had to make a “feather” to put on the class turkey. Thomas’ teacher sent a note home with a large piece of feather-shaped manila cardstock with instructions for parents to write a short paragraph about what their family would do on Thanksgiving. The kids were supposed to decorate it with markers or crayons and stickers. I wrote the short paragraph and then Thomas went to town decorating it and coloring it in! Usually, Jonathan and I would end up doing school projects for Thomas because getting him to participate in the activity was difficult and, as far as Thomas could see, pointless. This time I waited until Hayley was in bed for her nap and Thomas and I sat down at the dining room table and he colored the feather with his big, looping circles and dots. He actually sat for a few minutes and did this. I think his willingness to cooperate has a lot to do with his teachers requiring him to complete a few minutes of “art time” during work-time at school every day.
Today was my birthday so we went to Chuck E. Cheese’s. I’d rather take the kids somewhere fun for them than try to drag them somewhere that would otherwise be fun for me, but will end up being a frustrating hassle for all of us. They had a good time, as usual. Thomas lost a little toy car there which made for a difficult departure. We tried to tell him before we went in that he should leave the toy in the car so he wouldn’t lose it. Of course he didn’t listen and ended up losing it. I’m sure some other kid picked it up at the bottom of the slide; Thomas kept sending the car down and sliding down after it. All the way home, Thomas kept saying, “I want the car!” I couldn’t believe how frustrated I was about the whole thing. Talk about being unreasonable; it was just a stupid little car and he has literally thousands at home. Also, whoever picked it up will doubtlessly take better care of it than Thomas did. I was just so irritated that he didn’t understand how it would have been better for him to leave it at home or in the car! Try reasoning with an autistic four year-old! I should know better. We all got over the incident quickly, however.
Thomas is asking more and more questions all the time. A lot of them are repeated from another time, but I still do my best to answer them as plainly as possible. I have the tendency to get a little wordy (no, really?) and explain things to the kids at maybe an eighth-grade level instead of a two year-old level. That will either confuse them to the point where they’re sorry they asked, or it will broaden their vocabularies and encourage reasoning skills - and make them sorry asked. Thomas always starts his questions with, “Hey, Mommy?” It’s so cute. And he waits for me to respond! He’ll keep saying, “Hey, Mommy?” until I say, “Yes, Thomas?” Making sure that he has my attention is a big deal, I think. Before, he would ramble on without making sure that anyone was listening. Now, he prefers a verbal response. Just looking at him isn’t really adequate for Thomas. Really, it’s not adequate for me, either. Jonathan could be looking at me while I’m talking, but a lot of the time he’s got a glazed look in his eye and I can tell I don’t really have his attention. He’s looking at me, but who knows what he’s seeing?
Just a three-day week coming up! We’re going to my mother-in-law’s house for Thanksgiving this year. I hope that Thomas doesn’t get too far out of the school-groove during this four-day weekend. By next Sunday night, I’m sure he will be ready to go back. I know I’ll be ready!
The solution to the potty-training woes, I hope...
Oct 25, 2006 by AnonymousWe’ve had an important potty-training breakthrough!
After four days of continually wetting his training pants (actually yesterday he stayed dry at school), I think I’ve discovered the solution: Cars underpants. At Target a week ago, my husband and I were shopping and I saw some Cars movie-themed regular boy’s underwear, and I decided to get them as an added reward for keeping dry. This afternoon, after the third or fourth pair of soiled training pants, I decided to put Thomas in the regular underpants with no rubber pants over them.
At the potty-training workshop at Thomas’ school a couple weeks ago, I remembered that they had mentioned the importance of having your child help clean up after an accident and not making a big deal of it; that mistakes are a part of life and so on. I was thinking about that and finally decided to just try regular underwear and see what happened. I’d like to mention here that I’m no fan of messes, especially ones involving bodily fluids. After the Horrendous Barfing Flu of May ’06, I was ready to rip out the carpeting, buy plastic blow-up furniture and just live on the bare concrete slab until the kids were old enough to give a few minutes warning before some fluid made its way out of their little bodies. So obviously, it was a leap of faith to let Thomas run around in regular, not-especially absorbent underwear.
I went ahead with it, reasoning that maybe the unpleasant sensation of pee-pee running down Thomas’ leg would be enough to motivate him to hold it, and helping me clean up the puddle would be a good lesson for him. So I let him pick out which underpants design he wanted to wear and said a little prayer.
An hour went by, and his pants were still dry. Somewhat skeptical, I looked around in the obvious places for any signs of puddles and found none. I took him to the potty and a steady stream came forth, signaling that he had held it for a while. I praised Thomas profusely and went about my business for a while longer. Another hour went by, and the same dry underpants were still going strong! I took him to the bathroom again where he not only went #1, but also #2! He did have one accident when he crawled into the kitchen over the counter and was then blocked in by the gate we have. My husband and I were sitting on the couch with our daughter when I heard Thomas say, “I have to go pee-pee I have to go pee-pee I have to go pee-pee.” I jumped up to get him, but by then it was too late. He had gone a bit, but there was no puddle; just some wetness on Thomas’ legs. So we took him to the bathroom where we handed him a wipe and he cleaned himself up. That was the end of that. Then my husband took Thomas to the store where he stayed dry the whole time and still didn’t have to go when he came home!
The magic behind all of this is that I think Thomas felt like those padded training pants were diapers. They were bulky around his crotch like a diaper, and they could certainly contain his urine like a diaper. As soon as I put the regular thin cotton underpants on him, they must have felt different, like something you can’t pee in.
So as elated as I am about having found the solution to this problem (or so I think; we’ll see how he does in the days ahead), I’m a little ticked off that I went ahead and spent all of that money on the eighteen pairs of training pants and rubber over-pants. My husband asked how much we spent on all of that and when I told him, he didn’t seem to mind. I think he would have paid a lot more to get this potty-training thing going. Maybe we can use the supplies for our daughter soon.
Thomas has had a better week so far than last week. Yesterday and today were both “good” days. He did have another accident on the playground today, but it was nowhere near the monsoon-level accident on Monday. Thomas has been singing more songs from school too, and our daughter Hayley loves it when Thomas and I sing together.
He’s been telling us more stories about things that happen at school, like who takes him to the bathroom and what they played with in gym class. Sometimes I have to get right in his face to get the answer to a question though, especially if he’s enraptured by the spinning wheels on his cars. Then he’ll answer me very quickly as if to say, “Hey, you’re bugging me! Can’t you see I’m busy here?”
I’ve also been noticing the importance of choice in Thomas’ life. I’m giving him choices more and more often just to see how he reacts, and I think it’s helping him feel like he’s more in control of things, especially the potty-training. We kind of forced it on him, even though we were pretty sure he was ready physically, but asking him what reward he’d like or what underpants he’d like to wear really seem to help motivate him. I’m just a little concerned that he’ll want to wear character underwear when he’s thirty.