OK, so school was off - hard to find time to write here!
We had the first of the team wrap-around meetings/p-t conference at school on Wed., Day 129. Generally doing just fine - has his moments at school (as on the daily sheets) but really likes math and does well in it! Came up with a list of probably 20-25 strengths for Josh at the wrap-around meeting! Whoo hoo!
Day130, no school. We met Peter's mother and sister at the Botanical Gardens. After some initial problems (a PNES in the parking lot and then sitting down in the middle of the visitor's center!), the day was really good. I did use one of the Gardens' wheelchairs and Josh would not get up to walk, but he had a great time seeing them and doing the Gardens' bingo game - spotted everything on the card except the Fall weather - it was hot, sunny, and more like a June day! Afterward, we went to Max and Benny's to pick up lunch and did train hunting while we had deli - yum!!!
Day 131, I had to work so Gramma and Boompah came to kidsit. They said he was terrific all day. Had a session with Dr. Straube in the evening - talked about how Josh either winds up not having or comes out of quickly his PNES or meltdowns when you acknowledge some feeling he's experiencing. As we were leaving, he started to go into a PNES and doc asked him if he was nervouse or scared that he was going to have a "brain hiccup" (epileptic seizure) and fall, Josh came right out of the PNES and said yes. He got up and went right out to the car! Amazing. Gramma and Boompah hung around the house and we all had deli dinner when we got home.
Day 132, I hadn't planned on working on Saturday but Gramma and Boompah were all prepped to kidsit. So I went in to work for 1/2 a day and then we all took a drive up to Wisconsin to see the colors. Sorry, Badger fans, but the colors in Illinois were MUCH better! Josh was totally wiped and did hit Gramma once in the car but he calmed down immediately. We stopped for a snack and I made him get out of the car to cool off - and he did, even gave Gramma a hug as he was getting back in the car and told her he was sorry.
Day 133, lazy, lazy day! Yeah!! I was watching a movie at one point ("O Brother Where Art Thou") and Josh wanted to watch TV. I said nope, I was watching the movie. He went right in to the piano and started PRACTICING!! He practiced for 20 minutes all on his own! After the movie (it ended shortly after that), I went in and practiced with him for another 20 minutes! He really likes playing - Artur Rubenstein he ain't, but he likes it! Yeah!! Piano was one of the things the wrap-around team thought of as using as a reward during school - the school social worker may even have a keyboard to bring in so Josh can use it (and maybe the other kids as well!).
Day 134, Monday, no school - Columbus Day. We had another wrap around meeting here at the house- just Gramma, Boompah, me and Josh with the facilitator. Came up with my strengths, some ideas for a male mentor/respite worker, and wrap-around folks will pay for Josh's yoga class when that starts. She also said that, after Dad brought up the problems with communication, that there may be a way for wrap-around to pay, at least part, of the speech therapy at the center in Grayslake - yeah!!!!! That's the place that understands the connection between the speech and sensory issues, and wants to do the Listening Therapy again with Josh. That would be soooo amazingly terrific if that works out! Good meeting, Josh was very talkative the whole time.
So, here we are into Day 135, Tuesday. Piano tonight, don't think there's anything the rest of the week except school and work -phew!
Tuesday, October 12, 2010
Wednesday, October 6, 2010
Day 127, 128 into 129
Josh has had pretty good days. The chart system is working for getting on the bus- he gets right out of the car and onto the bus to earn a "piece of the donut" - the deal is he earns 5 pieces of the chart and then gets a real donut. But, it's like he has to have the PNES or meltdown so he's been having it in the house. Stinker knows the deal was he has to get out of the car and onto the bus without laying down, so that's what he's doing. Hhhmmm...
Construction outside the house yesterday and today - new street going down (yeah!). Lots of trucks and noise. The afternoon bus was not going to be able to come down to our house so I went up to the top of the hill to meet them - Josh got off without too much hesitation or problem (yeah!).
The class was at SEDOM yesterday and Josh WENT IN THE POOL again! Yeah!!!
Had his first piano lesson last night (Day 128) and did just an AWESOME job! Turns out the music therapist doing the lessons knows Josh's very first music therapist from Ottawa - they were even roommates during training/college! Small, small world. They worked on numbering his fingers, identifying numbers and black keys in both the music book and on the keyboard, she had him "playing" the black keys, and, really creepy, she put on a CD of some piano music and he was plunking on keys that were in the same key/same notes as on the CD - weird! The therapist was a bit hesitant based on what the NISRA folks had told her about his experiences at camp this past summer. But, within minutes of starting the lesson, she said she didn't see any problem with him taking piano and thinks this is going to be great (for him and in general)! As the lesson was ending, she said he is just delightful to work with! YEAH!!!
Another weird - after the lesson, I said he did so well that we would pick up dinner and go see trains for a car picnic. I called in the food order to the restaurant and, when we parked there, he said "Eat inside." I was stunned! He hates restaurants! It looked really crowded so I said I'd check it out first - and it was really packed. So I went back to the car and told him, then asked if he really wanted to go in or eat at the trains - trains. But, maybe next time!
The power of music!
Today, Day 129, is parent-teacher conference and the first of the team meetings for the wrap around services - sure hope the wrap around facilitator remembers!
Construction outside the house yesterday and today - new street going down (yeah!). Lots of trucks and noise. The afternoon bus was not going to be able to come down to our house so I went up to the top of the hill to meet them - Josh got off without too much hesitation or problem (yeah!).
The class was at SEDOM yesterday and Josh WENT IN THE POOL again! Yeah!!!
Had his first piano lesson last night (Day 128) and did just an AWESOME job! Turns out the music therapist doing the lessons knows Josh's very first music therapist from Ottawa - they were even roommates during training/college! Small, small world. They worked on numbering his fingers, identifying numbers and black keys in both the music book and on the keyboard, she had him "playing" the black keys, and, really creepy, she put on a CD of some piano music and he was plunking on keys that were in the same key/same notes as on the CD - weird! The therapist was a bit hesitant based on what the NISRA folks had told her about his experiences at camp this past summer. But, within minutes of starting the lesson, she said she didn't see any problem with him taking piano and thinks this is going to be great (for him and in general)! As the lesson was ending, she said he is just delightful to work with! YEAH!!!
Another weird - after the lesson, I said he did so well that we would pick up dinner and go see trains for a car picnic. I called in the food order to the restaurant and, when we parked there, he said "Eat inside." I was stunned! He hates restaurants! It looked really crowded so I said I'd check it out first - and it was really packed. So I went back to the car and told him, then asked if he really wanted to go in or eat at the trains - trains. But, maybe next time!
The power of music!
Today, Day 129, is parent-teacher conference and the first of the team meetings for the wrap around services - sure hope the wrap around facilitator remembers!
Sunday, October 3, 2010
Days 122 through 126
Well, when things are just so stressful, unfortunately something has to give - and writing here gave. Wednesday, Day 122, was just as crummy as Tuesday had been except after getting in the house after school, things were fine.
Thursday, Day 123, interesting thing happened. Josh got on the bus and I said something about Frank, the aide at school. Josh said, "Frank's gone." I was kind of taken aback and I asked if he was sick or something. Josh said, "Frank's gone." So I asked the bus driver and she said she hadn't seen Frank for several days. Hhhmm.. So I wrote Emily, Josh's teacher, an email and asked. She wrote back that Frank had been transferred to another classroom (don't know when) and that Josh was actually doing better since the transfer. Hhhmm.. didn't seem like much better at home! His class went to the greenhouse, and then to the Jewel to practice grocery shopping afterward. They are using the wheelchair a lot with Josh, it seems, and they used it at the Jewel - he was still totally overwhelmed by everything and, when he settled down somewhat, he was apparently swinging at staff members (Emily has such faith that she is sure he will eventually get used to school outings like that). When Josh came home from school, he walked in the house and said, "I miss Frank." I said something about how it is sad when people go away, or something like that, and I asked if he wanted to talk about it - "No." Josh just went on playing. Had a quiet evening. I decided, also, that he had been sleeping without the fan on (change in weather) - maybe that white noise was helping him get a better sleep, so I turned the fan on when I came up to bed.
Friday, Day 124, Josh got up and out of bed without any problem, had a good breakfast, except for one laying down thing, it seems that everything else during the day was excellent. So, the interesting thing is perhaps the fish oils are evening out in Josh's system, perhaps an acknowledgement of something that's bothering him was needed, perhaps he had a better night's sleep with the fan on - who knows - but Friday was excellent, Saturday (Day 125) was good but quiet with Gramma Bev and Boompah here (I can't wait to stop going to work on Saturdays!), and Josh did really well when Joan came for dinner and Scrabble - Josh went right up to Joan, pointed to her shirt (kind of surprised her!), and said, "UPS, cool!" (she was wearing one of her UPS shirts). He didn't want to go to bed with company here, but he eventually did snooze off on the couch and then went up without any problem. (Scrabble - first game I won by 3 points, second game, well, let's just say Joan kicked butt!)
Today, Day 126, I decided to try a major shift in how I handle the a.m.'s on the weekends. Josh always wants to go train hunting - well, OK. But, what has happened several times is that we get up early, he noshes on a quick breakfast while I make a picnic lunch, and then he lays down or we both plop on the couch, and we don't get moving until noon or later. So, this a.m., Josh was up at 6:00 - he came in and said good morning. Since I hadn't gotten to bed until after 2 (long Scrabble games, and Joan had her iPhone playing music on Pandora.com - fantastic playlist - Peter/Paul/Mary, Dan Fogelberg, Billy Joel, The Kingston Trio, Serendipity Singers, etc. - we were singing for hours!), I was totally wiped so I told Josh to go pee and got him back into bed. He came back in at around 7:00 and layed down on my bed (his feet by my face-YUCK!), but we both dozed for another hour. I got up to go into the bathroom and he just went back to bed - I came downstairs and had breakfast, lounged, watched a little HGTV, and he had fallen back to sleep. I figured, heck, why rush to go train hunting, let him sleep and I get some quiet time to myself. He got up on his own around 12:15, went to pee (like a racehorse!), got dressed and we headed out - I had packed up the bare essentials for eating and we stopped and Panera to pick up PBJ for him and a Cuban Panini for me (YUM!!). Had a great afternoon, got home around 5:00, made a vegetarian dinner, and it turned out to be just a lovely day all the way around!
So, in talking to other parents, while it can be a pain, it can also be a pleasant way to start a day by letting your tween just sleep! Think back, dummy, isn't that what you did when you were that age!?! Thinking about it, I remember Gramma Rose getting frustrated with me sleeping late when Scott and I went down to Florida for those couple of summers - just about Josh's age now. So, lighten up - sleep is a good thing for him, and those couple of hours of "me" time is good for me!
Tomorrow, another week and into Day 127.
Thursday, Day 123, interesting thing happened. Josh got on the bus and I said something about Frank, the aide at school. Josh said, "Frank's gone." I was kind of taken aback and I asked if he was sick or something. Josh said, "Frank's gone." So I asked the bus driver and she said she hadn't seen Frank for several days. Hhhmm.. So I wrote Emily, Josh's teacher, an email and asked. She wrote back that Frank had been transferred to another classroom (don't know when) and that Josh was actually doing better since the transfer. Hhhmm.. didn't seem like much better at home! His class went to the greenhouse, and then to the Jewel to practice grocery shopping afterward. They are using the wheelchair a lot with Josh, it seems, and they used it at the Jewel - he was still totally overwhelmed by everything and, when he settled down somewhat, he was apparently swinging at staff members (Emily has such faith that she is sure he will eventually get used to school outings like that). When Josh came home from school, he walked in the house and said, "I miss Frank." I said something about how it is sad when people go away, or something like that, and I asked if he wanted to talk about it - "No." Josh just went on playing. Had a quiet evening. I decided, also, that he had been sleeping without the fan on (change in weather) - maybe that white noise was helping him get a better sleep, so I turned the fan on when I came up to bed.
Friday, Day 124, Josh got up and out of bed without any problem, had a good breakfast, except for one laying down thing, it seems that everything else during the day was excellent. So, the interesting thing is perhaps the fish oils are evening out in Josh's system, perhaps an acknowledgement of something that's bothering him was needed, perhaps he had a better night's sleep with the fan on - who knows - but Friday was excellent, Saturday (Day 125) was good but quiet with Gramma Bev and Boompah here (I can't wait to stop going to work on Saturdays!), and Josh did really well when Joan came for dinner and Scrabble - Josh went right up to Joan, pointed to her shirt (kind of surprised her!), and said, "UPS, cool!" (she was wearing one of her UPS shirts). He didn't want to go to bed with company here, but he eventually did snooze off on the couch and then went up without any problem. (Scrabble - first game I won by 3 points, second game, well, let's just say Joan kicked butt!)
Today, Day 126, I decided to try a major shift in how I handle the a.m.'s on the weekends. Josh always wants to go train hunting - well, OK. But, what has happened several times is that we get up early, he noshes on a quick breakfast while I make a picnic lunch, and then he lays down or we both plop on the couch, and we don't get moving until noon or later. So, this a.m., Josh was up at 6:00 - he came in and said good morning. Since I hadn't gotten to bed until after 2 (long Scrabble games, and Joan had her iPhone playing music on Pandora.com - fantastic playlist - Peter/Paul/Mary, Dan Fogelberg, Billy Joel, The Kingston Trio, Serendipity Singers, etc. - we were singing for hours!), I was totally wiped so I told Josh to go pee and got him back into bed. He came back in at around 7:00 and layed down on my bed (his feet by my face-YUCK!), but we both dozed for another hour. I got up to go into the bathroom and he just went back to bed - I came downstairs and had breakfast, lounged, watched a little HGTV, and he had fallen back to sleep. I figured, heck, why rush to go train hunting, let him sleep and I get some quiet time to myself. He got up on his own around 12:15, went to pee (like a racehorse!), got dressed and we headed out - I had packed up the bare essentials for eating and we stopped and Panera to pick up PBJ for him and a Cuban Panini for me (YUM!!). Had a great afternoon, got home around 5:00, made a vegetarian dinner, and it turned out to be just a lovely day all the way around!
So, in talking to other parents, while it can be a pain, it can also be a pleasant way to start a day by letting your tween just sleep! Think back, dummy, isn't that what you did when you were that age!?! Thinking about it, I remember Gramma Rose getting frustrated with me sleeping late when Scott and I went down to Florida for those couple of summers - just about Josh's age now. So, lighten up - sleep is a good thing for him, and those couple of hours of "me" time is good for me!
Tomorrow, another week and into Day 127.
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