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.
I know that discussing artificial sweeteners is one touchy topic for many families, especially when PWS is involved and our choices are so limited. I want to write about our latest experience with Erin and Splenda, not to add fuel to the fire, but in case what we have seen rings a bell with anyone else. Some of us use artificial sweeteners w/o problem and others of us don't. I'm not giving direction to either group, just our experience with Erin.
In theory, using Splenda or others is ideal. The calories are low, and so is the cost (at least compared to things like xylitol). We've stayed away from all of them but decided to give it a try when we were going through a time when a situation arose when we needed to increase Erin's liquids dramatically. We tried to use a little Crystal Lite lemonade every day. I used the bottled kind and even diluted that. Within a few days, we saw major changes in behavior. She became irritable, inflexible, and all-around unpleasant. After a wash-out from the Crystal Light, she returned to herself again. This is not to say that she still doesn't have a flare from time to time, but the intensity and frequency of her meltdowns were markedly different. We won't try that again!
We have other options. We didn't have to even try Splenda, but the convenience and cost were appealing. What we saw from those days was that it was definitely NOT worth it for us. It may well be that only a subset of children with PWS are sensitive to this or that, but it might be worth considering if you are concerned about the type of issues we saw with Erin. Again, before anyone takes offense, I am not evaluating anyone else's decisions, just describing our experience in case it might benefit someone else.
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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.
Artificial Sweeteners
Sep 24, 2006 by AnonymousArtificial Sweeteners
I know that discussing artificial sweeteners is one touchy topic for many families, especially when PWS is involved and our choices are so limited. I want to write about our latest experience with Erin and Splenda, not to add fuel to the fire, but in case what we have seen rings a bell with anyone else. Some of us use artificial sweeteners w/o problem and others of us don't. I'm not giving direction to either group, just our experience with Erin.
In theory, using Splenda or others is ideal. The calories are low, and so is the cost (at least compared to things like xylitol). We've stayed away from all of them but decided to give it a try when we were going through a time when a situation arose when we needed to increase Erin's liquids dramatically. We tried to use a little Crystal Lite lemonade every day. I used the bottled kind and even diluted that. Within a few days, we saw major changes in behavior. She became irritable, inflexible, and all-around unpleasant. After a wash-out from the Crystal Light, she returned to herself again. This is not to say that she still doesn't have a flare from time to time, but the intensity and frequency of her meltdowns were markedly different. We won't try that again!
We have other options. We didn't have to even try Splenda, but the convenience and cost were appealing. What we saw from those days was that it was definitely NOT worth it for us. It may well be that only a subset of children with PWS are sensitive to this or that, but it might be worth considering if you are concerned about the type of issues we saw with Erin. Again, before anyone takes offense, I am not evaluating anyone else's decisions, just describing our experience in case it might benefit someone else.
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