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....