Days 129, 130, 131, 132, 133, 134, into 135

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!

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!

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.

Day 121

OK, really rotten morning. One of those days when Josh wouldn't get up from the floor, peed on the floor, then took forever on the pot. By the time he was dressed for school, there was no time for breakfast. So, he took it with to school and, as fate would have it, had a pretty good day at school. They did not have swimming but had art - he's got something about the art teacher and he hit her again - could be the smells in the room, the fine motor aspect of it, don't know if she moves in close, just don't know why. They did a foot fish - don't know if this is really how they did it but Josh said he put his foot on the paper and someone drew around his foot, then he put eyes and "paper stuff" on the fish. Don't know if the hit may have happened when drawing around the foot or what - didn't get the whole story. On the other hand, when he is working with almost anything else, he participates, gets praise for his work, and, according to the daily sheet, had a much, much better day than yesterday, and "it was a pleasure working with Josh today." Apparently there was something that happened getting on the bus after school, though - they brought him out in the wheelchair and he slid out of it, getting his rear end stuck in the chair. After they got him out of the chair, he had one of his "meltdowns," then got on the bus - all of it about 10 minutes. Getting off, he was hesitant and it took about 6 minutes to get him off - I finally got up on the bus, took his hand and said, "let's go." He got off. He was really tired, I could tell.

But, we sat down on the couch and took about 15 minutes or so to just talk. Josh was resting his head on me and we talked about cooperating, what that means, how we all need to cooperate with each other, etc. I told him his behavior the last few days is not cooperating and he needs to change that. He said that sometimes when he just sits down or lays down on the floor he sees the blue light or his eyes get wobbly. So we talked about how he really needs to use his words to tell people - if he wants people to cooperate with him and not get frustrated or angry, then he needs to tell them what is going on in his head and then maybe they can help him instead of getting angry or whatever. I like sitting and just talking with him - maybe he doesn't understand all that we talk about but, eventually, maybe he'll get it.

As I was making dinner, he dumped the entire wastebasket of his newspapers - huge pile right by the couch. He was just going to let it sit but, nope, I said he had to pick it all up (roast beef got a little overcooked but oh well). I held the bag and we sort of made a game out of it - I see a blue and white paper, I see a paper with a letter X, etc. - it was all picked up in about 5 minutes. He ate a huge dinner and we talked the whole time. I have to say, sometimes my brain starts hurting figuring out his words and the context he speaks in, but it is nice to have a conversation.

Which leads me to the show Parenthood. I happened to catch it tonight. There's a kid on the show who is supposed to have autism. His dad was frustrated and hurt when the kid didn't want to talk to him, have a simple conversation, etc. All I could think of is that I know so many people, sometimes myself included, who have the same frustrations. It's hard raising a kid with needs, it's sometimes lonely, it's exhausting on a lot of different levels. Sometimes you start the day behind the eight ball because your kid behaves in such a way that you just head off to work exhausted. But then there are the times that your kid accomplishes something that you've never thought he could, or he does engage in a conversation that makes a lot of sense, or he comes up with an idea that surprises the heck out of you - and it's all worth it. My career is dealing with people who have been convicted and are imprisoned or serving time of some sort - it's the rare occasion that we get a win, but when we do, we all savor the moment and it makes the career worth it - we've accomplished something, we've upheld the constitution or someone's rights in some way. It's the same in my life with Josh - I savor those moments when there's an accomplishment or a surprise, or a hug from out of nowhere.

Tomorrow, Day 122.

Day 120

Another mixed bag today. Josh got up just fine, got washed/dressed, ate a good breakfast, then wouldn't go outside for the bus. He finally did after a few minutes, then had a full blown PNES when the bus got here (bus was pretty late). The daily sheet said he got off the bus OK, but then went into the bathroom at 9:10 and didn't get off the pot until 10:45! They had to sort of "force" a "meltdown" (we really need to come to terms with the terms - I'm pretty sure they were talking about a PNES) and he got up all happy and went right into the hygiene stuff without a problem. They went for a long walk and, in a crosswalk, he laid down. They had the wheelchair with them so got him into it and off the street. He walked, then, for about 45 minutes! Josh's teacher wrote that she really wants to use the wheelchair for those times that it could be, really, dangerous so they are putting limits on it - he can use the wheelchair to cross the street but only if he uses his arms to move it, same with some times in school, but otherwise he has to walk. And, his teacher started a new kind of visual calendar that tells Josh when it's OK to use the wheelchair and when it's not. My concern is he is going to become reliant on a wheelchair but maybe not, and I know it makes it all easier for school folks. I just wish, hope, pray that these PNES and the laying down thing eases up. It actually has since last spring, but it's behavior that is definitely getting really, really old. Other than those times at school and this a.m., he seemed to have a pretty good day. I simply don't get it....

Tomorrow, Day 121. Keep fingers crossed that it will be an easier day - they go to SEDOM, swimming, etc. Could be interesting.

Day 117, 118 and 119

Kind of a rough few days. Don't even remember what the note said for Friday but I know the bus times were hard. Yesterday I had to go to the office again so Gramma and Boompah were here. They said Josh played around for awhile but mostly they were just "lazy." Josh wanted to order supper so we ordered and Dad went to get it - when he got back, Josh was almost totally asleep, didn't get up to eat, and did fall asleep while we were eating. He wound up going up to bed without eating (he did get his meds in along with an NV - he wound up having an extra NV since he didn't drink them on Friday - he had school lunch and I'm not exactly sure what happened with the drinks for lunch and during the day). Anyhow, he had enough protein throughout the day.

Started Josh back on the fish oils (earlier than I had planned but that's OK) - Ultimate Omega blend from Nordic Naturals - keeping him on the basic dose (2 caps a day) for now and he's taking it without any complaint - "the magic fish" that helped him so much with speech. I started him on them yesterday, Day 118. Today, Day 119 (of NV, that is) his sentences were already longer and clearer. But, on the other hand, he was so uncooperative today. We went to Ottawa - but it took an hour and 15 minutes for him to get off the floor after getting out of bed, then just sat on the toilet for another 20 minutes or so. I think he was working himself up to being overly anxious about going. We finally got out the door and to Ottawa. The day was OK except he wouldn't even consider getting out of the car. On the way home, he got very teary and said he missed Ottawa and "the old house" (which happens to be for sale). We talked about how I miss Ottawa too sometimes, and it's an OK thing to miss our friends and the happy times we had there. But, it's also really important to think of the good things that are happening now - so we went through a bunch (we like our house, our cats, Josh loves his teacher and school and SEDOM, etc., etc.). When we got home around 5:30, he wouldn't come out of the car. He finally came in around 6:10 or so. He went right into the bathroom, threw his dirty clothes down to the basement, came into the living room where I was. I sat down on the couch and said today was too much for me, that his behavior and the uncooperativeness was too much for today. So, what does the stinker do - comes right over and gives me a hug and kiss, and says, "I love you, Mommy." How can you possibly remain upset or worn out after that?

Days 114, 115, and 116

Well, except for a few hitting incidents at SEDOM on Tuesday, Day 114, Josh had a pretty good day. And, except for that little incident, Mrs. Lincoln, how was the show? Hhhmm... I guess there were a couple of hits while helping Josh change clothes before/after swimming (and he had a great time in the pool and did well there! whoo hoo!!), and, for some reason, he got his art teacher right in the face. Don't know what that was about and Josh wouldn't talk about it. I think the daily sheet said there was a meltdown or two around the bus and lunch times so, really, not so great a day.

But, it could be because he was starting to feel sick. On Wednesday, Day 115, I got a call around 1:00 or so that he had thrown up and was running a fever. Seems there was another kid in his class who was sent home with the same symptoms earlier that day, and, when I got to school at 2:00, there were two other moms from other classrooms picking up their kids. The secretary said to one mom that she tried to get her kid to keep some crackers down but he didn't. Hhhmm.. So, I brought Josh home and he just was fine! I had called Gramma and Boompah on the way to pick Josh up - I had planned on stopping after work to pick up some last minute things but wasn't going to be able to. I knew they were out and about so asked them if they could pick up the couple things and just drop them off. Little did I know that Mom had gotten a shot for her eye and was wearing a big 'ol eye patch! Yeesh! So they stayed only a little bit and Josh was up and playing. Go figure. He still had a slight fever, and I only gave him some juice and a piece of toast later in the evening - it all stayed down just fine.

Today, Day 116, I had arranged to work from home - reading a transcript - and Josh snoozed almost 3 hours in the morning. He kept himself busy, watched some movies (I got him to watch Annie Get Your Gun! Yeah!!! He loved it!!!), snoozed a little more. He felt a little warm around 4:00 - but thermometer didn't register any fever - it is hot in the house today from the weather. He kept food down - did it easy - mostly juice, a couple cups of milk with the NV in it, some toast - did a french toast thing for lunch and then just a PBJ for supper with a little fruit. He seems fine so he'll go to school tomorrow. Right now, he's laying on the couch, picking his nose - YUCK!!! I wish I knew a way to get him to stop that. Unfortunately, there are several adults he knows/sees who laugh about it, make light of it, and engage in the practice themselves - but they tell Josh they do it in private, in the bathroom - wish Josh would just pick that schnozzola in the bathroom! YUCK!!!

I'm watching Josh out of the corner of my eye - he's laying there playing with his fingers, pressing pointer to pointer, middle to middle, etc., like finger exercises! Pretty cool to watch.

Tomorrow, Day 117. Decided that, on Day 120, I will reintroduce the fish oils - Josh has been off those for a long time now for various reasons. We'll see if there are any surges or anything. I have not been happy with how speech is going - to me it seems like a bit of regression in articulation although his sentences are much lengthier. The speech therapist who did the eval a couple of weeks ago called yesterday and said she will not recommend speech therapy at this time but will recommend Josh get evaluated for an assistive device. Hhhmm... She sent the referral over to Josh's doc so I'll call in a few days for the referral. Therapist is most concerned about functional speech - well, why not recommend speech therapy to work on verbalizing functional speech in an understandable way rather than relying on a device? I'm conflicted on this....

Day 113 into 114

Looked like a pretty good day (with a couple of "meltdowns" during the day), Day 113. Daily sheet showed Josh participated in even more things at school, was working well with the adults.

I was cleaning out a box from the garage (still have some in there that haven't even been opened since moving in a year ago!) and found an exercise program I had picked up at a special needs seminar. Program was designed for folks on the autism spectrum, ADHD, depression, and other issues. So, I took it out and Josh and I were exercising. I kept having to get him up off the couch but, in fact, he did it! Lots of crossing the midline stuff, marching, stretching, some complicated things (the two folks on the DVD both are on the spectrum) - Josh really likes the stretching. Curiously, the DVD says that calf stretching is good for speech development - hhhmm... wonder why? And crossing the midline (touching right hand to left knee while marching, etc.) is really good for a lot of things. So, if I can get Josh up and moving to that DVD maybe three times a week to start, it will be really good for both of us!

Into Day 114 - at SEDOM and swimming! Josh was talking about the swimming as he was falling asleep last night - sure hope they use the chair in the shower room again as that really made him feel safer last time!

Days 109, 110, 111, and 112

Did it again - too many days without writing. Yeesh.

The daily sheet on Thursday and Friday (Days 109 and 110) show that there seems to be a couple of times that are consistently hard for Josh and his transitions at school - goes into "meltdowns" or whatevers - right about lunchtime and afterward when they go out or for their "leisure" time. And, it doesn't seem to matter whether it's at school or when they are at SEDOM or the greenhouse - so I'm wondering if he's just tired (so sensory stuff is exacerbated), or maybe just plain hungry/low sugar/headache before lunch. Josh's p-t conference is coming up in two weeks so definitely something to talk about, if not before then. Josh's teacher is, understandably, a bit on the busy side especially with one new student to her classroom, so I need to remember to be patient.

Thursday (Day 109) Josh came home with a pink envelope for me. They had been playing a listening bingo game during the day and I guess he got to choose a prize for winning a round - he chose a present for me! This is the first time he has, on his own initiative, chosen to give a present to anyone - surprising! And it was appropriate - it was a really cute bracelet!

His teacher wrote that she was helping him make a card for me (the card in the pink envelope)and he hit her a couple of times in the face - he has had a couple of hitting incidents (hit a kid in the lunchroom also that day). I know this sounds wacky, but hitting was always Josh's response (that fight or flight thing) to sensory and anxiety overloads. When he broke the leg last Fall, the fight went out of him - he didn't even really hit the people in the hospital even with all the pain and fear. He went "into himself" and that's when the seizures started - both epileptic and non, as well as the anxiety stuff. It's been heck trying to figure out things this past year since it has been so incredibly different with him retreating into himself. The hitting in the last few weeks maybe is him turning the corner and coming back to himself - not that it's great to be hitting, but it seems like this is a return to the Josh he's been until last Fall. I don't know, just a theory.

Josh did an "excellent" job on Friday, Day 110, with the buses, and, except for the meltdowns before and after lunch, he had a great day it seems - participated in things, worked well with the adults, was "compliant," and did a great job getting off the bus even with workers next door banging away putting a new roof on the neighbors house!

Yesterday, Day 111 (Saturday), I had to go to the office again (wish Francis would come back, or let me know when she'll be back so I can figure out a better schedule for the time being) so Gramma and Boompah kidsat for the day. Mom said he was terrific, played with the train, watched a little TV, they all snoozed a little, he was helpful in the kitchen - and she said he was such a gentleman! At one point, she was getting up to go the bathroom and Josh got up, held her walker to stabilize it, went ahead of her to the bathroom and turned on the light and lifted the toilet seat lid! What a guy! She said later that, at one point, she was worried Josh was going to hit Dad - Josh was going to the fridge to get his milk for lunch and Dad was leaning right next to him at the fridge door to help him find it - up close and personal, so to speak. But, Josh did great! And, back to bathroom stuff (sorry), Josh has been more particular about his modesty, shall we say.. Mom would normally check on him in the bathroom when he goes to pee or whatever (!), but now he's asking for Boompah - maybe a guy thing, but, and I just thought of this, maybe it's Josh being nice to Gramma - make it easier on her to not have to get up the stairs to the bathroom? Hhhmmm...

Today, Day 112, Josh and I were totally lazy. We were going to go train hunting but after breakfast we both just plopped down on the couches and fell back to sleep. We didn't get up again until almost 11:00! I was going to mow the lawn, wash the kitchen floor, vacuum some, make some breakfast cookies, etc., etc. Nope, zip, nada - we both just were, as I said, totally lazy! It felt good!

Tomorrow, Day 113, back to the plan, Stan!

Day 107, 108, into 109

Day 107 - had a good day at school even though a few "meltdowns." It seems there are certain times of the day (and yesterday's note shows it again) when the meltdowns happen - getting off and sometimes on the bus at school, lunchtime. There has to be some connection, and a way for school folks to circumvent the habit it seems he's into there. The rest of the days go really well and the note is always that Josh had a good day or a great day - and the communication system shows he's working hard, is participating in things, etc. The major transitions during the school day are what is causing problems.

At home, he's getting on the bus really well, off the bus easily, and he's playing around the house after school. He's tired, that's for sure. He's not taking any snoozes during the school day (with rare exception), so when he gets home he plays for a couple hours, we have dinner, and then he just collapses on the couch - snore city! Going up to bed has been no problem - I just wake him, and walks right upstairs.

Heard from a friend whose daughter has autism. Keeping them in my thoughts and prayers, that's for sure. One of those stories where the dd was totally mishandled by school folks and she wound up in behavioral hospital for 9 weeks. Horror story all the way around. She's home now, but it sounds like they are going through the wringer. (so glad I didn't listen to one doc who suggested Josh go into hospital - things have improved so much since meeting with Dr. Madamala and Dr. Straube - finding the right people is so gosh darn hard and I feel like we've been very lucky in that regard).

Yesterday, Day 108, was the one year anniversary of the broken leg. I happened to look at my clock on my computer at 12:48 - just about the minute last year that I was getting in the ambulance with him. Yeesh, what a memory to hold on to. Thank goodness he made the recovery he did - that leg is stronger than ever, and even straighter than it had been with practically no pronation in that left foot anymore! It's taken a long time, but I think even Josh is feeling like he's stronger.

So, into day 109. I can't wait to set the clocks back - this getting up in the dark stinks!

Days 98 into Day 107

Wow, computer problems, busy-ness, and just plain forgot - 10 days without writing here - oops!

Just summary, then - overall, PNES have gone down to maybe - maybe - one a day. There was one day Gramma and Boompah were kidsitting while I went to the office (this past Sat. - Day 104, I think that would have been) - Josh had a terrific day - played all day with them, took a very short snooze, was great about getting up to go pee, absolutely no meltdowns or overloads or PNES. Was the day after a session with psychologist and doc brought in his dog - a little pet therapy. Josh had a great time with the dog - a bit slow on leaving but no full blown PNES, just a very short overload as he got in the car after the session, but then jumped up and took the leash from doc and ran around the parking lot with the dog! I really have to reconsider the idea of getting a dog! Josh is having transition problems at school - especially into the cafeteria. He says it makes him "nerwous" with all the noise but we have decided to keep on trying. Our kidsitter's grandma, sadly, passed away on Sunday so I hope (selfishly, I know) that Francis will be joining us again soon. Had speech eval and vision exam on day 101 - not encouraging with the speech eval - she said she did not want to be discouraging because there is always room for improvement but she is going to pitch it to the insurance company that Josh needs work on functional speech and is going to see about getting a small assistive device for such circumstances as when we're out in a mall or something like that - in case he gets separated he will have the device to let people know who he is and who I am (since speech is hard to understand for strangers). I had hoped speech would be affected by NV but I'm not seeing it - other things, yes, but not speech. Vision exam went well - 20/40 in both eyes and no need right now for glasses (thank goodness!), but something to keep in mind.

So, today is, if I've counted correctly, day 107 on NV. On with the day!

Days 95, 96, 97 and into 98

Closing in on 100 days on NV - huge progress in some areas, some not as much in others, but definitely worth continuing on it.

Generally pretty good end to the week, again a couple of "meltdowns," seems to be mostly mid-day at lunchtime (tired? hungry? noise? Josh says the noise makes him "nerwous") and on Thursday getting on the bus after school - don't remember if it was raining that day but it was definitely hot and humid, tired? (Gramma and Boompah surprised us on Thursday - they came by with YooHoo for Josh, and Gramma and I sat outside to wait for the bus - Josh got off beautifully) Otherwise, Josh is working very hard, is attentive, is needing very few (if any) prompts on pretty much every day. He is amazingly good at math, of all things! You consider math is a pretty abstract subject, I'm sure they're using tactile for math but, gotta say, I'm surprised at how much he likes it and is so good at it. It's still very elementary math - no algebra or trig (!) - which actually is a good thing since I stink at math and would never be able to help him with homework! LOL! I sure wish the reading would come though. And, he's doing a great job getting on the bus in the a.m. and off at home - he's coming down the stairs all on his own, keeping his eyes open (always a good thing!), and getting right up. Bonnie, the afternoon driver, said she is running out of stickers for him (reward system for getting up/off the right way - her concern has been that, in an emergency, he would not be able to get off - I'm thinking if there's an emergency, even if he's doing a good job daily, he is going to have a very hard time getting off a bus - thank heavens no emergencies have arisen and I pray they don't!). The note on Friday also said that one of the aides, the gentleman named Frank, came up with a really fun system for Josh to complete "tasks" - the parts of the tasks are placed around the classroom and Josh has to go around putting elements of the tasks in a container - he really likes it (maybe associates it with collecting garbage!). Smart man, Frank!

Had a rough day yesterday, Day 97. It seems there is often one day of the weekend that is hard - could be he's just tired from the week and needs to have a "lazy day." But, when you've got things to do, places to be, and people to meet, arranging the weekend for whichever day might be lazy is difficult. Josh was very resistent to getting up and going, resistent to getting in the car (we had planned on going to Elmhurst for train watching and a picnic - I made a big picnic lunch and, as he did once before, would not get up to go - so he lost out on it; after Elmhurst we were going to go to the office where he could help me pack up a lot of his stuff in anticipation of the office move in October - Josh wound up spending the day at Gramma and Boompah's where, of course, he was terrific, and I wound up getting a lot of work done at the office), was resistent to coming back home after Gramma's, but he was great about going up to bed.

This a.m., Day 98, I got up a little early and had some quiet time downstairs, couple cups of coffee. Josh woke up, got into the bathroom on his own, and we got washed up/dressed. He's been fantastic - I had left my coffee cup on the end table and he brought it to me in the kitchen to wash, he ate like a pig (2 pieces toast with PBJ and an egg, and two cups of NV!), and he's very excited about a neighbor who will be doing some culvert work in front of our house and a friend who may come by for a visit later in the day - he keeps running to the door to see if our friend is here (don't even know for sure whether coming or not!). I've got to mow the lawn (finally!) and Josh is talking about taking the lawn mower for a walk - don't know if he'll be so gung ho on that once our neighbor comes with the bucket/digger! We'll see how the noise of the work is going to affect him. I'd take him out and about rather than staying home but don't know if/when our friend is coming over, and our neighbor might need my help in digging the culvert and laying the piping. Big job for our neighbor - very nice guy, postal worker, 11 grandchildren - all boys! He likes Josh a lot and Josh really likes him, mainly because he's a "mail guy" and he had a great dog, Kodiak (Kodie-Bear) (unfortunately, Kodie was put down the other day - very old for his breed and weight, was falling apart and not making it on stairs or outside, very sad, he was a great dog).

So, on with Day 98, whatever this day will hold! No school tomorrow (Labor Day) so Gramma and Boompah will be kidsitting as I need to get into the office for the day (so much for Labor Day for me!). Happy Labor Day to all!

Day 94 into Day 95

Mixed bag yesterday, although Emily's note was that, except for one sensory issue, Josh worked hard and had a really good day at school. The not so great - a girl was getting her lunch card and got really close into Josh's space - he pulled her hair (actually got some hair in his hand!). The girl was OK, and the note was the she doesn't understand too much anyhow. Emily said they didn't give Josh a time out or punishment because they all saw what happened and knew that it was a sensory response to her coming so close. I know she was at Josh's birthday party and she does like to come in close to everyone. But, I sent a note back saying how can we work on this with Josh. Is there a desensitization that we can work on, etc.? Josh also seems to be having a hard time around lunchtime - a couple of meltdowns then. Wonder if he's hungry, thirsty, tired, whatever? The rest of the day he works hard, participates (yeah!), works well with the staff and sometimes peers, gets praise, puts forth effort, etc. So, what is happening around lunchtime?...

The OT session yesterday was canceled because of the insurance snafu - sure hope the speech eval next Wed. isn't canceled as well. The OT is trying to work out the snafu, so hopefully it will be and Josh can continue with the therapies - working on that space issue with OT would be good.

Josh had a great day with buses again - right on, no overload at all in the a.m., and right off with no overload or anything coming home! Yeah!! We goofed around for a little bit and I was famished so we ate early and Josh fell asleep early - never a good thing since he was up early this a.m. (Day 95).

Can't wait for the weather to change - this humid rainy stuff is exhausting! So, into Day 95!

Day 93 into Day 94

Whoo Hoo!!!! Josh went in the pool at SEDOM!!!! And, he had a good time!!!! Emily was with him the whole time and the note (and an email from her) was that he really enjoyed being in the pool! YEAH!!!! He had to be prompted a couple of times and he did have sensory overload afterward when they finished in the pool and went on to the Home Living Center, though, but, hey, baby steps! And, the overload could have been in anticipation of the HLC - they sometimes use a mixer in there to make foods and the mixer always gets him (the noise). But YEAH! on the pool!

The staff have added a new phrase to the Josh-spectrum of behaviors - meltdown. They are defining it as somewhere between a sensory overload (when he just lays down and won't move - but not a PNES) and being a poop (sort of normal 12yo pain in the neck kind of thing) - he will bat at staff members during a meltdown (as if he is telling them to just leave him alone, I guess), and he had one of those yesterday. But, otherwise, he had a pretty good day.

Josh also did really well with the buses yesterday (except one coming from the HLC back to school). In the a.m., I went to put his backpack on the bus, turned around, and there he was just walking up to the bus - no overload, no PNES, just walking to the bus! He did have a very short overload once he sat down in his seat, but it lasted only about 30 seconds. Coming home, Bonnie (the driver) thought putting him in the second seat would work better than the front seat (there's a little metal triangular brace at the bottom of the divider between the seat and the stairs - she started thinking that piece makes it hard for him to come out of the seat -fear of tripping maybe). Sure enough, he got out without any hesitation or problem. Smart woman.

We had a visitor yesterday also - the "facilitator" from the Mental Health Board came to do paperwork and meet us for the wraparound services. He participated for about 45 minutes and then, when we actually had to do paperwork, he went to watch a movie (and fell asleep!). During the meeting, he held her hand several times - a sign he likes her and trusts her (Yeah!). She's very nice, a former special ed teacher who also has a now-grown-up kid who had special needs (LD, BD, ED). The wraparound services will be interesting (will write more on that some other day).

So, with a few exceptions, generally a really good day for Josh! Yeah!!

On into Day 94!

Day 92 into 93

Josh is participating at school!! Day 92 note home said he was participating in several activities - not just "compliant" but participating! Yeah!!! Emily's system of communication is great - she has a chart with, on one side, the schedule for the day and on the other side is a list of behaviors all the kids exhibit with each one numbered. She just plugs in the number by the activity, and then adds notes as needed. This was the first time she put the number for participated! Whoo hoo!!! He also had a couple of "meltdowns" - not sure where that fits in on the Josh-spectrum
(epileptic seizure - PNES - vasovagel episode - sensory overload - just being a poophead), and he made himself throw-up at lunchtime (lovely), but otherwise a good day!

Josh got home and, instead of just laying down, he took a little bit of time getting off the bus but not an inordinate amount of time, came in, and we had to run an errand. He just got in the car and off we went. Had a great dinner and he was sound asleep on the couch by 8:00. Went up to bed with no problem at 9:00 (we both went to bed then - I was wiped!).

Had a really long conversation with the school nurse. The nurse from last year is on a different IEP team so this one wanted to update and get a bit more info on Josh and his various conditions. At the end of the conversation, she said she was really impressed with how I'm so on top of things, know so much about Josh in all respects, know what Josh needs and sees to it that he is getting them. She said she was so appreciative of the conversation and all the info. I said thank you but aren't most parents like that and she said, unfortunately, no. That most parents she deals with simply can't handle all the issues, the therapies, and don't have the knowledge of their child's conditions, so this was "refreshing." How sad, and here I thought I was not doing enough! She also said, and this was great to hear, that she has observed Josh a few times and knows him - she thinks he is generally a very happy kid, upbeat, funny, and she is seeing progress - movement in the "right" direction! Yeah!!!! We talked a lot, also, about a safety plan for him (especially with the vision stuff going on) and the seizure plan. She would like to get the school psychologist more involved in the safety plan since that involves in behaviors that we are working on with Dr. Straube. She seems pretty good - sure hope they don't switch nurses now!

Today, Day 93, Josh's class is going to SEDOM for the day. He's very excited to be going, and to see old friends from there. I hope the day goes well. Emily said they will try to get him into the pool (or at least into his bathing suit!). I suggested they use a seat in the shower room since he is soooo nervous about being in the shower/locker room/pool area (since that's where he wiped out and broke the femur last Fall). She said until he is more comfortable, she will personally walk him through the locker room/shower and, yes, they will try to have a seat for him in the shower - good idea.

So, we'll see how the day goes! Into Day 93!

Day 87 through 90 into Day 92

Did it again - was so busy that I let writing here slide. Josh's week, Days 87 through 89 went fairly well at school - had a few PNES, particularly on Friday (Day 89) but he is working well and generally is "compliant" with everyone. There was even a notation on one of the days that he was "kind" to a peer - don't know what he did but that was good to see! We had a session with Dr. Straube on Friday - Josh talked a lot, talked about emotions he was feeling in different circumstances (that's new! talking about emotions is a new thing since being on NV), we talked about relaxation techniques, Doc said he would like to get to the point where he understands Josh enough to be able to talk without me in the room to interpret (he'll get there), but then wouldn't get up to leave. He laid down on the floor and we tried every technique to get him up and moving. He finally had a little overload (doc was doing "active ignoring" and was cleaning his office up, took out the vacuum and into the overload Josh went) and then got up only to have a full blown PNES in the doc's hallway when he saw the cord to the vacuum (Doc had put the vacuum into the bathroom but the cord was visible). Doc saw the whole progression into, through, and after the PNES. Josh got right up afterward (as usual) and walked out of the office. Doc was amazed - at the door, Doc said Josh certainly is a complex kid (do ya think??). Doc has earned Josh's trust, though. Josh asked the Doc to help him with his seatbelt - he does that when he trusts someone and likes them - it puts the person in really close proximity so it's clear Josh trusts him, allowing him to get in so physically close.

Gramma and Boompa kidsat Sat. a.m. (I had to go to the office to put in time to exchange for the coming week as I will still be getting Josh off the bus - haven't heard from Stephanie yet). Josh did really well, got up all on his own to pee, only one PNES right before dinner. Sunday was the same (Day 91). We were going to train watch in Elmhurst but Josh, after I had made the lunches to go for a picnic, decided he didn't want to go. I was a little peeved but he was clearly tired - he fell asleep almost immediately after he said he didn't want to go. So we wound up having a quiet day at home - good thing, it was soooo hot and humid, a picnic would have been horrible! He snoozed for awhile, then he was playing around and I was actually getting housecleaning done (yeah!) and laundry.

Into Day 92. Sending his bathing suit and towel to school for the pool at SEDOM tomorrow. Emily, his teacher, said she would personally work with him throughout the pool experience (since he's so nervous about the shower and pool there after what happened last year with the fall and breaking his leg). That will be interesting (?!?). So, on with Day 92! (and I'll try to actually write every day again!)

Day 86 into Day 87

Got the first call of the school year yesterday morning, Day 86. Josh had a non-epileptic seizure in the bathroom, had been complaining of stomachache, and then pooped. They took him to the nurse, temp was fine and he was recovering fine. I spoke with Emily, who didn't feel it necessary to come get him (neither did I). I explained the vasovagel episodes and said it sounded like that was what happened, especially with the pooping aspect of it. Sent a bunch of info to Emily about vasovagel also (just something copied from wikipedia - it was the easiest to understand). Had a good day after that - worked well with adults and kids in a group activity (yeah!), worked well with all school work.

Some sad news about Francis, though. She had texted me that she was on her way back from Ottawa - she had to do paperwork to place her grandmother into hospice - she has taken a turn for the worse and it looks like she is not expected to survive much longer from her cancer. Very sad for Francis. So, she will be unable to do kidcare for a period of time - not sure how long at this point. She will be moving down to Ottawa for the time being to care for her mom (who has MS and has been caring for the grandma) and grandma until the end. I felt so badly for her. She was more concerned about leaving me/Josh without care and she was worrying about my work situation. Told her she needs to do what is right for her and her family, we will be able to work things out, and she should just take care of her family. I feel so sad for her, she was so upset yesterday telling me all this. She kept recounting stories of her grandma. So sad.. I know that her grandma has gone through so much over the last year or so. I just pray that she can go easily now and have some peace.

Josh and I talked a lot about Francis being so sad (she was crying quite a bit during our talk and Josh was upset that she was so sad). He understands that her grandma is really sick and I tried to explain that her grandma would be going away and Francis would not be able to see her anymore. Not sure if he really understands why, but he related it to not seeing friends from Ottawa and how that made him sad. That's OK for now...

So, into Day 87. OT today this morning.

Days 83 into 86

Josh was with Peter on Days 83 into 84 - said things went really well over the weekend. Josh met up with a boy at their hotel - the boy had CP and was in a chair - Josh hung out with him, I guess. Josh said the boy's mom took the boy out walking in his chair and Josh, I think, went with for a little bit - at least I think that's what Josh meant!?! Josh didn't get all the NV over the weekend - P said he gave him 2 servings on Saturday and I don't think any on Sunday. So, when we got home on Sunday (Day 84), I gave him some, and saved some for Monday a.m.

Rough a.m. on Monday, Day 85. Josh just didn't want to get up for school. Eventually he did, but he wound up taking his breakfast to school, and we had enough time to just get washed/dressed/and out the door for the bus. The note home from school said he had an excellent morning - right off the bus and into the building! Worked well all day (really likes math! - had some addition problems that came home - got them all correct!), but when they went outside after lunch, he just didn't want to come in again! Took quite a long time apparently. Worked with OT three times yesterday - looks like he was attending for long periods of time (although he threw something at one point :-( ) And, he didn't want to eat lunch at school so by the time he got home, Francis said he was really hungry! (Josh got off the bus and into the house without any problem also!) She gave him a sandwich and cookies (looked like a lot of cookies!) and he ate a full dinner around 7! The shipment of NV came (yeah!) so he had a serving of that as well. Josh was also really tired (as was I!), so we both took a rest just before dinner - it helps so much when he has snoozed even just a little bit! Before the snooze he was crabby, wouldn't do anything. After the snooze (and it was only about a 1/2 hour snooze), he was up, going to pee, came to the table for dinner, ate a lot, and was just so much more pleasant!

We had a surprise visit from Gramma Bev and Boompah - they found the Buckaroo game while they were out and about yesterday, and they wanted to give it to Josh for a back-to-school present. They got here just as we were finishing dinner. Then a friend dropped in unexpectedly. Josh fell asleep while our friend was here and, as usual, when it was time to go upstairs around 9, I woke him, he went right up, peed, and went right into bed, fell back asleep immediately.

Maybe the tiredness is from the lack of NV over the weekend and into yesterday (maybe just Monday stuff? who knows!!??) - sure hope he's not getting that cold back! So, into Day 86 with full NV dosages!

Day 82

Day 82 - picture day! Josh did so well walking out of the house in the a.m. to get on the bus - no laying down, no problems. In fact, he came outside so well, right into the car to wait for the bus, that we had extra time! We wound up driving around watching the garbage trucks - oooohhh. Unfortunately, he did have an overload just as the bus pulled up, but he pulled himself out of it quickly and walked right up on the bus, said thank you to the driver (I think for waiting), and then said "good morming." The note that came home - had just a great day and was "awesome" for the pictures! Can't wait to see them now! Josh was going to his father for a weekend and was happy to be going, but slow to get moving. We finally got out the door with all his supplies but no time to grab something to eat - was going to eat at the "kid swap" spot but Peter drove up just as we did. So, I'm on my own this weekend and will see Josh tomorrow (Sunday, Day 84).

Didn't get the shipment of NV yet and there isn't enough for into Monday - (had sent NV with Josh to his father) - hopefully it will come on Monday (Day 85)!

Day 80 and 81

What a weird day yesterday, Day 80, turned out to be. We both took it easy, taking our time doing all the "day before school" stuff - we did make peanut butter cookies, we made a homemade no-bake granola/energy bar thing, I did the laundry, Josh did a lot of writing in his notebooks and playing with his train. I also increased his fluid intake as per the neurodoc/primary doc's nurse. Well, Josh did really well with getting up to pee - a couple of PNES though preceded the getting up and both times he wound up, afterward, pooping up a storm! Extra liquid not only gets a person to pee but, oh yeah, moves other things along as well! ;-o!! By dinner time things had moved along quite a lot! But Josh said he felt fine, just "poopy!" So much poop, in fact (sorry, this is gross), there was some in his depends which he felt the need to tell me, but only after he got some on his foot and decided to walk into the dining room to tell me - leaving little brown tracks along the way. YUCK!!!! So, I got him cleaned up and then washed the floor, only to have the cats throw up later after they ate their catfood! Like I said, what a weird day!! Josh wound up falling asleep on the couch while I was playing piano (he asked me to "play music, sing Mommy!" - always happy to do that!), and went up without any problem after a little while.

Today, Day 81, was the first day back to school and Josh was really excited and nervous. He had a short PNES right before going out to the bus but, after it was over, he walked out, walked around the driveway (instead of sitting down in the car to wait), and got right on the bus. He's the only kid on his bus, unfortunately. The other kid who was supposed to be on there dropped the school or program, something like that, and would not be taking the bus. Don't know if there will be changes. Off Josh went and, of course, wuzzy me, cried all the way to work.

His day went pretty well - was "compliant" and worked well - especially in math (go figure!!). The note from school was that he got off the bus quickly and well, but then took quite a bit of time to actually get into the building. A little bit of time to get out of the classroom after lunch also, but otherwise a "pretty good" first day back. Yeah!! Getting off the bus took about 8-10 minutes, Francis was here and we had the chair set up for him on the driveway - unfortunately he missed it as he sat down and, PLOP!, down he went onto the driveway in a little overload (not a PNES). He had not snoozed at school so was kind of tuckered but wound up talking to Francis for about an hour while I ran a grocery errand. She left and, as dinner was cooking, Josh snoozed a little. Woke to ate, and now is just taking it easy before bed. Good day all in all.

Tomorrow, Day 82, is picture day at school! Whoo hoo!

Day 79 into Day 80

The OT session yesterday, Day 79, went pretty darn well! Josh had a PNES getting out of the car, but after that he was rarin' to go! Dana was right there, he went right in, and they worked hard for a full hour. She said they worked on fine motor stuff - she was working with Josh on buttoning - she would pinch the slit open and he would slide the button through - he doesn't have the motor coordination yet to do both aspects of buttoning. They also worked on writing his name and holding the marker correctly - she said it was a good idea for me to have gotten Josh the triangular crayons for school supplies - they promote correct hand grip and, voila, they don't roll off the table or surface! She said the J was looking good and the O is really good; S is a little dicey and H looks like railroad tracks (still!). She said there was one hitting thing but she said it was very slight, very light, and he pulled back as he started - she said she clearly got into his space too much.

I mentioned to Dana the dinner plate picture - don't recall if I wrote about it yesterday. We were sitting at dinner on Monday night - meatloaf, he had sweet potato, and we had zucchini - very colorful dinner! So, I took his spiral notebook and said let's draw a picture of dinner since it just looked so colorful! We pulled out all the colors of markers that matched the food colors, I drew the circle for the plate (in blue, since that's the color on the plate that was exposed), and he colored in the spaces for the different foods. When he was done, and the notebook was sitting right next to his right elbow, he said, "Too much, too close!" and he got up and moved the notebook away. Josh always eats with his plate way far away from him - sometimes in the middle of the table. I always thought it was the smell of the food overwhelming him, and maybe the colors. But, when I mentioned the notebook thing to Dana, she said it would seem the colors are overwhelming him more. She said it was very interesting and she would work with using multi-colors when they do fine motor/writing work - to see if that is part of what is going on.

After the session, we got home and Gramma and Boompah were there already (they were kidsitting for the afternoon). I had the chance to mow the lawn (yeah! it really needed it!), and then zoomed off to work.

I also called the neurodoc yesterday (while I was at the office) to ask about Josh seeing the "blue light" and getting the headaches. I also mentioned the getting up thing - when Josh gets up from laying or sitting down for a long time (except in the a.m. when he stretches in bed before getting up), he will quite often (if not always) get up, stop for a second, and plop back down as he puts his head in his hands and then just sits again - yesterday and Monday Josh said he had "wobbly eyes" at those times and that was also when he saw the "blue light" and got the headache. Doc asked how often it happens and I said almost all the time except in the a.m. or in the evening after he's snoozed a bit and then gets up slowly to go upstairs. I was concerned that it was a reaction to the Keppra or some other type of seizure going on (with the blue light he says he sees and the headache, I was worrying about temporal lobe absence seizures since these "episodes" last a very short time and he doesn't lose consciousness or anything). Doc said he doesn't think it is related to epilepsy at all - sounds more orthostatic - blood pressure drops/vasovagel syncope. Well, I know all about that since I've got it - and I never made that connection with what was happening to Josh! So, doc said the keep a journal for the next two weeks, have him stretch a bit before getting up to get the blood flowing, and give him 4 more glasses of liquid a day (this a.m., I realized he probably isn't getting enough liquid to counter any possible vasovagel effect so I'll up the liquid! there is liquid in what we eat, especially the applesauce Josh has, but I think maybe he needs more actual liquid - juice, water, etc.). I called Josh's primary doc to let him know (doc is on vacation) and the nurse I spoke with agreed that keeping the journal and upping the liquid is the way to go (she said gatorade or something like that would be good as well - watered down). If things get better and these "episodes" lessen, then we're looking in the right direction, if not then we'll go from there. (nurse also said the blood tests Josh went for a couple of weeks ago are perfectly normal - yeah!) So, even though he's going through this "I don't want to go in the bathroom to pee" thing, liquid will increase and hopefully he'll feel better upon rising - maybe that's what is prompting the PNES when he has to get up or get out of the car after sitting for awhile (and so on) - if he's dizzy he's probably nervous about getting up and particularly going to pee - who knows???

Gramma and Boompah said he did really well with them - played with Gramma and the train, worked at the dining room table with his notebooks for a really long time, had a good lunch, slept for a bit. When I got home, they were in the living room just chatting. They said he had another PNES for no apparent reason - he was laying and watching a Blue's Clues, they were just hanging, and Dad said he looked over and Josh was going into a PNES. Mom said, though, that right after, he said his tummy hurt - and then he went in to pee and poop (again) and felt better. Now that I'm thinking about it, vasovagel can cause dizziness when pooping as well! Hhhmmm... I will need to make the new charts for the bathroom and the "laying down thing" - he has finished the second chart already (first chart took almost a month for the bathroom, this one only took two weeks - progress!!). Josh is still staying up later - he didn't snooze off until almost 9:00 - got him upstairs without any problem (and no dizziness) at around 9:30.

So, we're into Day 80 - the day before school starts! I've taken today as a vacation day so I can make some baked goods for lunches, maybe make some homemade granola or energy bars, we'll organize his backpack and get it ready, maybe look for some trains later in the day, do the laundry and get all his clothes together (extras to take to school) - all the day before school kind of things! On into the day!

Correction on Day 75

Oops! I guess it was on Day 74 that Stephanie called and came by! Friday must have been pretty uneventful! That's what I get for not writing in here every day!! LOL!!

Days 75 into Day 79

Friday, Day 75, I was getting Josh up and he wanted me to read to him. He chose The Little Engine That Could so I started reading when the phone rang. Stephanie was calling to say she was fine and wanted to come by. She wanted to reassure Josh she was fine and make sure they were still buds. We talked on the phone and I went back in to Josh to tell him. The minute I mentioned Stephanie coming over he went into a PNES. When it was over, he sobbed and sobbed for about 15 minutes! He kept repeating "Stephanie hurt, Stephanie hit, I sorry." In the past, I always knew that Josh knew he wasn't supposed to hit people but this was the first time he actually, I think, understood the consequences of his hitting and maybe really felt guilty about it. NV? He eventually stopped and we got up and going. Stephanie came by in the afternoon and they played for about four hours - she even gave him lunch. By the time she left, they were best buds again and she said she still wanted to do kidcare. I had asked Stephnie if she saw any difference between Josh at camp and at home - definitely. She said he was so relaxed here at home, much more active. She said camp probably was a bit hard with all the other kids and the noises they make - home is much more calming and quiet.

Had the second session with behavioral psych. Josh had a very short PNES getting out of the car into the office but had a good session until toward the end - he seemed to be getting tired. It took much less time to get out of the office - no laying down but he did sit down (smart kid - I told him beforehand that no hitting, no laying down and we could go see trains - well, he didn't lay down!). Doc had good suggestions on the sticker chart thing - I brought the chart we've been doing for peeing and he liked it, but suggested doing another chart or another "track" on the same chart for the laying down thing. Josh is almost done already with the second "pee in the potty" chart so the next one will have two tracks.

Terrible storms Friday night.

Saturday, Day 76, quiet day. We were nothing but couch potatoes most of the day. Josh played with his toys, watched a little TV, we both slept a lot - I think still fighting off the colds we've had. Josh has been having what I think are absence seizures - probably due to the cold - he says he sees a blue light and his head hurts. Must call neurodoc about this.

Sunday, Day 77, I was going to try to take Josh to see Thomas the Engine at Union but decided the weather would not be our friend and the crowds definitely not. So we went to West Chicago to do lunch picnic and watch trains - good train day! Otherwise, very quiet, uneventful day! Only one PNES although Josh said he did see the "blue light" a few times.

Monday, Day 78, Stephanie came to do kidcare in the a.m. Josh was so happy to see her! I went off to the office for the morning and worked from home in the afternoon. There was some street work in the a.m. but Stephanie said they couldn't hear it at all. Weird, I left with the door to the sunroom open, get some fresh air into the house. When I came home, Stephanie said they couldn't hear the street work but Josh said the birds were too loud so they had closed the door. Hhmm. She said he had one absence seizure that led into a PNES - just before getting up to eat, I think it was. She also said he actually went in to pee - something she hadn't been able to get him to do during camp. They played with his train, some other toys, watched a little bit of an AirBud movie. When I got home we all sat around talking for a bit and then Stephanie left. I could see Josh was really tired and I wanted to check his depends - had a feeling that with the PNES he had while she was here, they were undoubtedly wet. He got really mad and grabbed my dress. I just looked at him and asked why he was mad. He didn't respond but went down on the floor - no PNES but fell sound asleep within minutes. When he woke up, he was in a totally different mood, happy, laughing, went in to pee, and we had a nice quiet evening.

Today, Day 79, Josh starts OT through Good Shepherd. I hear him moving about upstairs to, I guess it's in to Day 79!

Day 73 and 74

Yesterday, Day 73, was a really good day! Gramma and Boompah kidsat in the a.m. - I was expecting a client call so had to be at the office. I wound up leaving the office at around 1:00 or so, and stopped to get school supplies and other stuff. I got home around 2:30. Mom and Dad said he was great all morning - even went to pee a couple of times. Interesting, they said usually he asks Gramma to come to the bathroom with him, but yesterday he asked Boompah - hhmmm... maybe a guy thing!?! They did say they were in the living room (I think) and Josh was on the floor. They were just talking and, all of a sudden and without any apparent reason, he just went into a PNES - they couldn't figure out what might have precipitated it.

When I got home, he was just eating lunch so we sat and talked while he ate - we talked about what happened with Stephanie on Tuesday. As soon as I started the conversation, he reached over to knock his food around but stopped himself. I told him he didn't need to be angry, and he didn't need to throw his food, we were just talking and I wanted to tell him that Stephanie was feeling much better (she had called me) and was concerned about him. We talked some more about not using his hands when people are too close but using words instead - we practiced what to say, and then he finished lunch. We played with toys, we had both of his remote control toys out, set up a ramp/track thing, and were running them over the ramp and crashing them into each other. Even Boompah was having fun with it all!

The site director from camp called while we were playing, and said that they were unable to find anyone that Josh knew who could be his aide for the last two days of camp. Since it would be pretty much stressful for him, and the other campers and counselors, they suggested I find other arrangements for him for the last two days. Oh well, it was worth the try, I guess, for the therapeutic riding. He did like the horses and apparently showed no fear of them - enough to have petted the one horse - so I think I'll look into it for the school year with me going with him. They wanted to make sure I understood that they by no means were looking at this as something behavioral or something that was purposefully done by Josh, and they really hoped that I would sign him up for other things during the year (Bravehearts?). I will. I'm not happy with the Special Olympics situation through them - they have much higher functioning teams so I'm going to need to find some other SO place for Josh - he really wants to go to the "big gym with the garage doors!" Anyhow, I will be working from home the next few days.

Aunt Shirley and Rosie came for dinner - pizza party! Josh wound up having grilled cheese and then went to watch a movie while we sat around and talked. He fell asleep on the couch and, when it was time to go up, went up without any problem.

This morning, Day 74, we were both up early - normal time but early. Since neither one of us was going anywhere, I figured we could sleep some more. So I got Josh up to pee, and then we both went back to sleep - until 8:00! Whoo hoo!! Josh was taking his time getting up so I had my coffee and then went back up to get him up and going. He wanted me to read him a book so I started to read to him and the phone rang - Stephanie, to say she was feeling much better and that she wanted to come by to make sure Josh understood she was OK, not mad, and they were still buds. After the call, I went back to tell Josh, and the minute I mentioned that Stephanie was feeling better and wanted to come over, he went into a PNES - very interesting. After it ended (and it was a longer one), he was just sobbing and saying he was sorry, that he was sad, and that "Stephanie OK?" We were just hugging and I was telling him she was fine and he would see she was fine when she came over. He went into the bathroom to pee, but he was still just sobbing about "I sorry" and "Stephanie OK?" I've never seen him react this way to incidents when he has hit someone - clearly understanding he caused "a hurt" and was obviously feeling guilty - something new since on NV. He always, I think, understood he shouldn't do the hitting, but this was something more. I know that on our vacation, when he threw the milk in the car, he was clearly repentent - he was holding Gramma's hand and staying silent. But even this was more - much more emotionally.

He finally calmed down and actually took a shower. Stephanie got here around noon and she played with him - making sure she got as close as he could stand, asking if she was too close, etc. Josh asked that Stephanie help him with his lunch, and then they played more. We all put the ABC floor puzzle together, and Josh was just talking up a storm. At one point, Stephanie told me that, after the hitting incident, he kept leaning in to give her kisses and hugs, and held her hand the whole ride back to the pick-up site. She also said she thinks the camp folks were mostly at fault - they should have never put that many campers (with the needs they all had) in the van they were riding - it should have been a bus, not a van, and she said no one helped her with Josh - they saw that she was having a rough moment with him but no one helped her or tried to hold Josh's hands. She said she was wrong for moving in too close without warning him, especially when he was so tired, hot, not feeling well, etc., but someone should have helped her. She, in no way, blames Josh for any of it, understands what and how it happened, and really wants to kidsit more for him, hopefully having him in camp next year also. She also said her mother, who is a head nurse at some schools in the county, knows the behavioral psychologist we're seeing and she said he is fantastic - so Stephanie hopes (as do I) that things will be much, much better by next summer (if not long before then!).

In addition to all that, Josh has earned four stickers today - going to pee in the little bathroom all on his own, no prompting for two of the times! Whoo hoo!!

Funny thing happened (hhhmm... might not be so funny in the future!) - this has happened twice now in the last three days. Josh has never liked to talk on the telephone - he will push the phone away from his ear (as I hold it) after saying maybe two things to whoever is on the other end of the line. Two times now, though, he has picked up the phone and just started pressing numbers! The first time, he said he was calling Gramma to ask her to come over. Today, he was pressing numbers to call Francis to find out if she will be coming over or if he could go to her house. Someday I'm going to look at my phone bill and wonder who was called in Irkutsk or something!! LOL! Anyhow, we called Francis and he left a message for her on her voicemail. We also did an email to Aunt Cathy, and got an email back from the one he sent two days ago to his old teacher down in Ottawa, Amy.

He's falling asleep on the couch in the family room now. I'm debating whether to just let him sleep down here tonight or wake him in a bit and get him upstairs - I want to watch some of the meteor shower and, with the skylights in the family room, I could have a fairly good view just by laying on the floor! I don't know, we'll see - I could see some of the meteor shower from my bedroom window, too!

So, lots of emotions, actually asking for me to read a book to him, making phone calls and talking on the phone, and earning seven or eight stickers just in the last two days! Very interesting couple of days!

Day 72 addendum

OK, not so good a day. I just received a call from the camp site director. Apparently Stephanie minimized the hitting incident with Josh/her. The site director said Stephanie told her she wasn't feeling well so they took her over to an immediate care facility - they didn't do any x-rays or anything but the doc said she may have a very slight concussion - Stephanie has had concussions before so she sort of knew that might be the case now. She will not be able to come to work tomorrow, so the director asked that I make other arrangements for Josh tomorrow. They will try to figure something out for the rest of the week, but they will see what happens. The site director said she definitely wanted me to know that they in no way think Josh did this purposefully, he loves Stephanie, but it is just part of his conditions. She said they have kids hit personnel all the time, and some with much more serious consequences - it's just the nature of the people they work with. I told her in a weird way, the was a relief to hear, but I was very concerned about Stephanie. Two minutes later, Stephanie called and said she was really just fine and wanted to come to work but the site director said no. Stephanie was more concerned about not having said good-bye to Josh, and about me being able to handle arrangements for him in the event he cannot go back to the camp. I just broke down crying, I was so worried about her! She said she goes back for a follow-up and will call me to let me know how she is.

I feel just awful!

Day 72

Mixed, but good, bag today! Since Josh didn't go to camp at Bravehearts yesterday, I was concerned about how he'd do today. Thank goodness Stephanie was there! Josh rode in a 15-person van (no bus) and Stephanie sat next to him - it was hard getting him up into the van simply because of the steps but he did it! She said he did a good job all morning - he didn't ride the horses today and he wouldn't brush them, but he did pet one horse, Ben, who was, as Josh said, "brown and white and gentle." Apparently, he did just fine at the stables. They went to the pool afterward - incredibly hot, humid, and there he was in long pants from the stables. He wouldn't let Stephanie change him into shorts so they just rolled up the pants above his knees (she said he would be OK coming in shorts tomorrow). He sat on the edge of the pool, splashing everyone. He did pull a little girl's hair, but she was fine and said she understood. Stephanie and Chris, the van driver, said Josh was soaking! His pants clearly dried during the rest of the afternoon - he was kicking back on a chaise lounge, I guess, and just soaking in the rays! His shirt and beach towel are wet, his orange little towel got tossed into the pool when they were playing, but he had a good time! Stephanie said he did hit her twice - once was "her fault," she said, because she didn't warn him she was reaching over to do his seatbelt. Don't know what happened the second time but they made up. He had only one PNES during the day (once before leaving the house also), a couple of simple overloads, but several absence seizures - he's still fighting the cold we both have so I think that is playing into that. I'm hoping they lessen/go away once the cold is completely gone.

Josh got off the van fine - a little nervous and Stephanie had the chair all ready for him so he could regroup. The stairs are tricky so whoever is getting him on/off will have to be careful about that - the stairs are narrow, there are three of them, and then his seat (or the ground, whichever way you are heading). Once he regrouped, he got right into the car and started yacking away about his day! We got home and, boy, was he thirsty! He had a YooHoo, the NV, and white grape juice! Plus, he had a big dinner, dictated an email to send to an old friend, and now he has crashed on the couch - snoring away - and it's only 7:00!

Good day, overall! Hope tomorrow he uses a brush on the horse, or at least pets them more. I really don't expect him to get on the horse within this week, but if he could get used to being around them some, perhaps continuing with Bravehearts into the school year could be beneficial for him - eventually doing the grooming and even getting on the horse! We'll see!

Day 71 into Day 72

Darn, it was a cold yesterday. Josh was coughing so much, his nose was running, sneezing, the works. So, he stayed home and I stayed home to work from home - and also dealt with the cold I caught! Even with the cold, though, Josh had a terrific day! He slept a lot and every time he woke, he went to the bathroom on his own - stayed dry all day until late in the afternoon when he had the one PNES he had yesterday - then peed. He played with his train a lot, read magazines a lot, watched some TV. When it was time for supper he initially didn't want to eat but did. After dinner I said, "Let's go up and have your cookie upstairs, then we can play some games!" He was surprised but went right up. We wound up playing with puzzles, an alphabet book, and number dominoes. He fell asleep just about right away around 7:30.

Interesting, since Sunday night, he has had a few real epileptic seizures - absence ones. After each, he said his head hurt and, for the first time since he had the initial EEG almost a year ago, said he saw "the blue light." I know that some people with epilepsy see a light or an aura prior to a seizure - so I'm figuring that's what that was. If he's up to it, there is an epilepsy support groupd meeting tonight - maybe we'll try to go. I also know that his neurodoc said colds and fever will bring on seizures so I wasn't surprised by this - he didn't have a fever but sure had the cold!

Josh hasn't coughed or sneezed all night (that soup I made yesterday was good!) so he's going to camp today, Day 72. Sure hope he has fun at Bravehearts! Looks like it is going to rain - red in the morning... I know they are supposed to go to the pool afterward but, if it rains, they will go to the library instead. Fortunately, Stephanie will be his aide on the bus and throughout the day today so I'll clue her in on all that is going on. Hoping for a good day!

On with Day 72.

Day 70 into Day 71

Another great day, Day 70! Everyone came for brunch - no BBQ because of rain in the a.m. and again late in the day. But, Josh was friendly with everyone, talked to everyone, played with his train outside with Rosie for awhile (until mosquitoes got bad). Josh napped twice during the day - don't know if he's fighting a cold or if it's allergies but he was coughing some and sneezing with the watery eyes. The store brand of Claritin seemed to help so I'm leaning toward the allergies. Sure hope that's all it is - would hate to see him miss out on the Bravehearts this week. Josh had questions planned for Uncle Harry and Brad (do they have garages where they are are, etc.) and he sure asked them as soon as they both came in the door. Josh sat at the dinner table with all of us for brunch and again for dinner (ordered from Rosati's since we couldn't BBQ) - full table with food all over and he did great - ate like a pig and asked that Gramma help him! Josh even earned three stickers during the day, going to pee with minimal reminders. Went up to bed without any problem.

Today, Day 71 starts Bravehearts and, like I said, sure hope he doesn't have a cold. He's cool as a cucumber but hhhmm.... it would be such a bummer! On into Day 71!

Day 69 into 70

What a great day Day 69 was! Nice, quiet Saturday. Josh wanted to eat breakfast outside so we had our oatmeal out on the sun porch. After that, Josh watched went in to pee all on his own (no reminder from me), and Blue's Clues for awhile while I mowed the lawn (was so hot, I had to stop twice to cool off!) and just tooled around the house. At lunchtime, I turned the TV off and said that was it for a long time. He wound up playing with his train a lot, doing his "recycling," even emptied the baskets into the garbage in the garage. After that, we both just crashed, napped for a bit. When Josh woke up, he went right into the bathroom, peed (although a bit late - his depends were wet), and then got a new depends that HE PUT ON ALL BY HIMSELF!!!! I supervised by just reminding him to hold where the blue line was and make sure he didn't put both feet in one hole. It took about 5 minutes, BUT HE DID IT!!!! YEAH!!! We played games after that for quite awhile, had supper, and then we watched Underdog (he was just cracking up with the flying scenes!) and then I turned on a Thomas movie that was on On Demand - he fell asleep during that. But, before he fell asleep, I looked up online when Thomas was coming to Union - next weekend - and asked him if he would want to go see Thomas even if there were a lot of people - he said yes. So, maybe we'll make a trip over to Union next weekend! When it was time to go up, he had slept on the couch for about 45 minutes, went up without any problem. He was so cute, it was taking him a little bit of time to get back to sleep. I had come back downstairs and heard him saying, "Gramma Bev, Hi Gramma Bev, Gramma Bev tomorrow." It was like he was practicing what to say to her! He got up a couple of times to play with the fan in his room, but he eventually settled back into sleep.

Yes, today is Day 70 on NV, and Gramma Bev is coming over. So is Boompah, Aunt Shirl, Rosie, Uncle Harry, Aunt Vicki, Brad, and maybe Mallory for a BBQ brunch, and for the day. Harry is heading back to Virginia today so they won't stay long. But everyone else will be here for the day - big brunch planned and then we'll do BBQ later in the day if it's not too hot out - supposed to be in the 90's and muggy - yuck. Tomorrow starts the therapeutic riding at Bravehearts - I don't want to talk about it too much today as I think it will build up his excitement and anxiety about it. Stephanie has it all planned out, though. She will be around during the school year for kidsitting on weekends if I want/need (yeah!!). I'm really excited about it, though. I think I'll give Stephanie a camera and maybe she can snap some shots of how the week goes. Then school starts! This summer has flown!

Into day 70!

Days 67, 68 and into 69

Well, I was so excited when I picked Josh up at camp on Thursday, Day 67! They were outside waiting and Stephanie said I was going to be soooo thrilled - I'd have a beach towel to wash! She said Josh finally went into the swimming pool!!!! YEAH!!!!! He sat on the edge with his feet in the water. He would say, "All done, out of pool!" and then he'd start splashing around and having fun. Then he'd say, "All done, out of pool!" and start splashing around again! She said he had a great time! He did pull a little girl toward him and she got a little scared - Stephanie talked to the mom and she said the girl was fine, the girl said she was fine just a little scared but she was OK. Not sure why/how it happened but at least everyone was OK. Stephanie said Josh had only 1 PNES during the day and there seemed to be less hitting and nervousness (coincidentally (?) less heat and humidity!). YEAH!!! Besides the pool, they had gone to Lippold Park to play frisbee golf, volleyball, and mini-golf - Stephanie said he did a great job and had lots of fun! Even no laying down or anything getting on/off the bus! YEAH!!

Thursday night, though, Josh would not come upstairs to bed. I'd been thinking about this for a few days and decided who is it hurting for him to sleep downstairs - we do sleeping bag camp-outs in the family room and we sleep on the floor so what would be the big deal (except getting upstairs in the a.m. to get ready to go for the day). So I said, fine, sleep on the floor on the hospital sheet - good thing, he was drenched in the a.m. (Day 68) since he didn't/wouldn't go pee before going to sleep!

As I expected, the a.m. (Day 68) was really rough - extreme uncooperativeness getting upstairs to use the bathroom and take a shower. Lots of struggling, etc. He finally did get upstairs (good thing I left a lot of time in the a.m.!) and actually went into the shower with no problem. When I dropped him off at camp, I told Stephanie about the night before and the rough morning, said he'd probably have a marvelous day - and he did! When I picked him up early (had psychologist appointment), they were waiting out by the pool - and he had gone in the pool again! They had gone for a pontoon ride (I think at Crystal Lake) and Josh loved it! Stephanie said he got on/off the bus without any problem, on/off the boat without any problem, wore the life vest without any complaint, ate his lunch without any problem - just a marvelous day! At the beginning of the week of camp, I said to the counselors that by the end of the week, he'd be having a great time - do I know my kid or what!

We went to see the new psychologist yesterday - when we got there, Josh got out of the car just fine, walked up the curb, and then went down on the sidewalk into an overload (not a full PNES). The doc must have seen from his window because he came out and said, "This must be Josh!" I said, "Yep, and this is why we're here!" Josh got up within less than a couple of minutes and went right into the office. I like this guy, he had some good ideas on motivating Josh to get up to pee and stuff, Josh talked up a storm, the doc suggested teaching Josh more self-calming techniques that he'll hopefully get (he had PECS of the "stop, think, breath" thing like on Blue's Clues taped to his wall - so I pointed it out to Josh and reminded him that Blue says the same thing!), he has a small group of kids that do yoga in a studio next to his office and he suggested doing that (especially since Josh used to do yoga - haven't done it much lately), and we'll be doing "immersion therapy" - putting Josh into situations/settings that are anxiety-producing and working him through them - starting slowly and working into the full situation (sort of like those "fear of flying" type therapies) - doc will even come out to the car to work on getting in/out and moving through the process of coming into/out of the building. Josh did great during the session, as I said talking constantly. Doc said at one point (he and I were talking and Josh wheeled his chair - we were all sitting in wheely office chairs - directly in between us - gosh, ya think that meant something??) that Josh clearly likes being the center of attention! Uh, yep! After the session ended, though, it took Josh just about an hour to get out of the office. At first he wouldn't get out of the chair (he was having too much fun wheeling around the office), so doc wheeled him out to the waiting room (doc said he really didn't want to do that since it would reinforce the behavior - duh - but he did it anyhow), and Josh went down on the floor. He just would not get up (at least doc saw this and what I'm dealing with!). At one point, doc said, "I can see how this is stress-inducing." I chuckled and said, "That's an understatement. My doc says I need to reduce stress in my life." Doc laughed and said, "Maybe your doc needs to take Josh for a day!" Another patient came in and doc had to start that session - Josh was still on the floor. He eventually army crawled out of the office/waiting area into the hallway, then crawled the hallway out the door of the building. Unbelievable. Once we were out, I said to Josh," I'm leaving." I went and got into the car, turned the air on, and just sat for about 5-6 minutes - literally and figuratively cooling off. I went back and told Josh he needed to crawl up the stairs (there are 4-5 stairs down to the doc's office) if he's not going to get up. He turned over to crawl, went up one stair, and then just got up and walked right to the car as if nothing was wrong. Again, unbelievable. I was so angry and frustrated! As I was buckling him in he started to say something and I told him, "I'm furious and I don't want to talk to you right now." It was a very silent car ride home.

When we got home, I brought in stuff from the car and Josh tossed his gym shoes into the front seat. I told him he needed to bring his own shoes in, and I just went in the house. Within seconds, I heard his car door close, he came in the house carrying his shoes, put them down and went right to pee in the bathroom. I went to sit in the living room - when he came in to the living room I told him I was still furious and I was going to lay down on the couch, that I still didn't want to talk. He went into the family room, turned on the TV (The Nanny was on - yuck - and he didn't even ask for a Blue or train movie!), brought me his hospital sheet (I told him I don't need it, he does), and went back into the family room when I turned down the offer of the hospital sheet. I sort of dozed but kept an ear out - he wound up falling asleep. A friend came over to drop something off around 5:30 or so - when I checked on Josh, he had put the hospital sheet down perfectly on the couch (underneath his rear) and was sound asleep. He slept until almost 7:15. Very rough getting him upstairs to bed (I thought about letting him sleep downstairs again but decided I don't want him to get into that habit, and the morning had been rough getting him upstairs - didn't want a repeat) around 9:30 or so.

I know Dr. Madamala had said, in passing and in relation to these laying down things, that Josh was testing me. Don't know exactly what the testing is for - does he think if he does these things that he knows bug the heck out of me that I'll leave him, so he's testing how far he can push me? Or are these things just happening just because?? Does he think the lack of visit/communication with P is because of something Josh did (although I tell him that Daddy loves him and he is working hard and that's why he can't see Josh but he'll see him when he can - don't know what else I can tell Josh!), so he's testing me to see whether I'll "stick around" if he does things that create these problems? I tell him all the time that I love him, that I'm always going to be here no matter what he does (although I also tell him that I certainly don't like some of the things he does!) - maybe he's testing to see if that's the case? I know it's pretty sophisticated thoughts, but with the NV he's been thinking more abstractly (imagination has increased, understanding and engaging in more jokes and humor, etc.), and, what can't be forgotten, is that he is a kid first and kids of divorce do oftentimes go through this kind of thing. Maybe this is all divorce-related? Who knows?? Hopefully, working with Straube will get us all through this with minimal lasting damage!

This a.m., Day 69, I woke up a bit early and came down to have my coffee. Josh got up around 7:45 or so, went in to pee, brought some shorts downstairs, and we've just been lazing around. I want to get the lawn mowed before it rains (thought I heard thunder a minute ago) so I better get moving on that. Maybe a quiet day, maybe not - only time will tell. On, into the day!

Day 66 into Day 67

Well, mixed bag yesterday. Drop off at camp went a bit slow - Josh sat in his chair next to the car for a few minutes and then, after a PNES in the chair, walked in as if nothing happened (as usual). They wound up going to see Cloudy with a Chance of Meatballs - weather yesterday was yucky - and Josh did really well during the movie. Stephanie said Josh really liked the movie - he was laughing and getting all excited the way he does - really had a good time. The bus dropped them all off at the pool after the movie (weather cleared somewhat) but, by the time they were walking back over to the park building, it had started raining - not one of Josh's favorite things. Stephanie said he went down about 6 times just walking that short distance and it took over an hour to walk because of it. Much less PNES (only 3 at camp), but going down into minor overloads - she said she would say to him, "I'm not falling for it" or things of that nature and he'd get up. Darn rain! She said there was a lot of hitting as well - not other campers but her and other counselors. I apologized a whole lot, and no one was hurt, everyone understands. He walked to the car at pick up without any problem, walked into the office without any problem, and then sat on the couch in the foyer and had a PNES. After that, he was fine. He watched a little of the DVD while I read a transcript and then asked for the sleeping bag - slept for about an hour and a half. (Tom came in and said he wanted to talk about my current case - Josh was not asleep quite yet so I said give me 5 minutes - for Josh to fall asleep - boy, do I know my kid - 5 minutes later Tom and I were talking!) He is not laying down to rest at all at camp - Stephanie says he refuses and it's just too noisy as there are kids doing a lot of banging and yelling (hhmm... could be why the overloads and PNES). When we left, we picked up dinner and had a car picnic by the Metra in Elgin - saw three trains, ate, and then headed home. Bedtime was rough - lots of uncooperativeness. I didn't let him fall asleep on the couch - I was wiped and just wanted to go up to bed - not good. For some reason, he really does need to snooze on the couch before going up - maybe muscle issues/physically tired after the day?

Forgot to write the other day that there was one thing that I have noticed (yet another!) since being on NV - no drooling! Maybe because his speech has increased (constantly - CONSTANTLY- talking!), the muscles in his face and mouth are getting stronger/more toned and the drooling has become almost nonexistent - the only time he really does any drooling now is during an overload or PNES (when everything lets loose!). I mentioned it to Stephanie on Monday and she had a surprised look and said, "wow, you're right, I 've noticed that as well!"

Gonna be a hot Day 67 but at least much less humidity, so maybe Josh will have a better day. On the upside, the number of PNES has decreased since Monday, he is participating more at camp with other campers, he is making everyone crack up. Balance...

Into Day 67!

Day 65 into Day 66

Well, they wound up going to Crystal Lake Beach and canoeing on Day 65. Needless to say, Josh didn't do the canoeing - he and Stephanie stayed on shore, played, and ate lunch. He did go to the pool after they got back to camp - he even came over to the pool! Stephanie is bound and determined to at least get his feet in the pool today - yeah! She said he had several PNES (although less than yesterday, she said one was quite long) - it was very hot, very humid and his sensory stuff is so aggravated in humid/hot weather, I'm sure the weather played a part in that. He did eat some of his lunch but didn't want the sandwich (I'm bound and determined to get him eating something besides PBJs! ;-) ) Stephanie said he used the big boys bathroom at the pool (yeah!). When I picked him up, he walked out to the car without any problem, walked into the office without any problem, and then went into a doozie of a PNES on the couch in the foyer. After that he was fine, watched very little of the DVD I had for him, and then just crashed - slept for about an hour and a half. When he woke up, he was wet and I had forgotten to bring another depends so he was in just underpants and shorts by the time we went home. He came inside without any problem - only minor encouragement needed - did his lay down on the floor thing, got up and walked to the bathroom, and went down on the floor at the door to the bathroom into another PNES - peed through. Damn. He was so tired and upset, he sat on the toilet for quite awhile and then just went up to bed. At least I got his meds in him, but no dinner and no milk. Damn. I sent an email, after he went to bed, to an old friend from the old school district - I have to find out exactly what happened there - there is definitely a connection between small bathrooms and his emotional stuff, and I have to be able to help him through this. I'm hoping someone in the old district will finally tell me what, if anything, happened.

Today is Day 66 - they are supposed to go to the McHenry County Fair - it's another hot/humid day so I don't know what is going to happen. Looks like rain so far... I asked Josh yesterday if he was having fun at camp and he said yes, he even talks about some of the people so he is getting something out of it but I can't help but wonder. It is a new experience for him every day and that is a good thing. Just wish it wasn't so difficult. The people at NISRA are great, though, and they are watching out for him. Sure hope next summer is a bit easier for all.

On with Day 66!