Blessed Beyond Belief

Last week PE was great. Today wasn't so great. He happily chatted with the kids at first. Then the game started and he didn't understand the directions. So he just ran around. It finally became too much and he started acting like an angry monkey again. I pulled him aside and explained the directions to him. He did a couple more laps, but the then the game ended. We left and he was quite aggitated all the way home. When I talked about doing school work he was not happy about it. We walked in the door and he immedietly sat on the big ball. So I did some squeezes and sensory excerisises with him and that helped a ton. He was back. Now he's happily doing language arts on his computer.

New Schedule

Last Friday we were able to meet with a new tech for Will.  She seemed like an ok fit, so we went with it.  That meant that his new hours for developmental therapy changed from 9:30 - 1:30 to 12:30- 4:15.  This is exactly what we were hoping for so that we could start taking him to his old school for classes.  The three classes that rotate are PE, music, and library.  Yesterday was library.  He went it and picked out a book and was able to chat with some of the kids that he knew.  He seemed a bit shy, but that's pretty appropriate for not having seen all of them since last year.  He didn't cling to me or act inappropriately.

Today we went back and it was music day.  He's rotating around with one particular 4th grade class so that he can stay with the same group of kids.  Today also happened to be picture day, so the music room was being used for that.  The class met in the cafeteria instead. Fourth grade is the year that the kids learn to play the recorder.  Will seemed excited enough about that.  The music teacher labeled one for him and sat a couple of boys next to him to help out since the class had already learned some on it.  I stayed towards the back just to observe.

The boys started to show Will some fingering positions.  Then the music teacher had the class (which was over to the left of the boys) start playing two of the notes they learned.  Wow, it was loud and super high pitched.

I should have seen it coming, but sometimes it's hard to tell when or if something will bother him.  Will immediately covered his ears. I knew.  I knew we had lost him.  I waited though, to see if he might recover.  The boy trying to help him tried his best to get his attention, but Will had already checked out.  I moved to the row behind him and called him back to me.  He said, while still covering his ears, 'I gotta get out of here! I gotta get out of this cafeteria!'  He had already wrapped up the recorder and put it back in the case - confirming that he was officially done.

By the time we got back into the hall he had transformed into an angry monkey.  Really.  Full body positions, facial expressions and noises.  I told him he needed to use his words to tell me how he felt and so on, but he continued.  We walked to the office and went in to talk to the principle about the music class.  The principle has been quite accommodating and helpful in letting him come back for specials.  I explained to her that the high pitch of the recorders was not going to work for him and she understood.  Fourth graders have music twice a week and one class is with the recorder.  So it was decided that we would instead go to an extra PE class instead of the recorder music class.  The whole time we were in the office he continued to be upset and act like a monkey.  So I asked him if he'd like to go visit the PE class and see one of his friends from last year in that class.  He said he would and I explained that he needed to be 'Will' if we did that and not a monkey.  The second we entered the gym a couple of kids ran up to him all excited and wanted to know if he was in the class.  Back to the monkey noises.  As I was talking to the PE teacher he had the classes full attention by jumping up and down like and monkey complete with noises.  Sigh....

Specials were over and we walked home.  On the way I explained to him that wasn't appropriate, no one knew what he was doing, and to them it looked strange.  He seemed to snap out of it soon as we left the school and said a couple of times, 'I'm sorry mom.'

This episode is a perfect example of what happens with him. One minute (or day) he is a perfectly normal acting 10 year old and then something like a high pitched noise sends him into a full blown autistic meltdown.  Had he been on his own in that situation he probably would have bolted out the door and possibly out of the whole school.  The music teacher has her hands full with 30 other students.  

Hi, I'm Tara Kelly - self trained autism meltdown and recovery technician.  Nice to meet you.

On the walk home it was clear that 'Will' was back.  I told him we were going to sit down to do some of his school work.  He got his laptop out and we checked his email and then when straight into the language program - which he chose to do.  These programs are so interesting and interactive!  I was quite impressed with how they work.  Will whizzed through them knowing exactly how to manage it.  The work didn't seem to easy or hard for him, just right.  And I was able to see what he was doing, help him remember things and be there with him.  He worked like this for a good 40 minutes straight.  Then we logged onto the scholastic book orders for his school and I let him choose a couple of books to order.  He was happy.

 

After sitting and thinking for that long I figured it was a good time to get him up and moving.  Get a little blood flowing and heart pumping.  We went to the backyard and I had him jump on the trampoline while I picked vegetables out of the garden.  He's been really reluctant to go out back for a while now because of bees.  For some reason he has this big fear of bees even though he's never been stung.  So we have to challenge him to get out there now.
  

 

Then we went inside and I made him lunch.  He sat and ate lunch and I let him watch America's Funniest Videos, which is his new favorite show to record on the DVR.  Once he was done we worked together to pack up his computer and get everything ready for transport to pick him up.  They came at 12 and he was off!  His new tech should be taking him over the school computer lab to do some more school work, to the center to work with other kids, and probably do some type of outside activity.  He'll be home about 5pm.  So, that's it.  That's the latest on our schooling adventures.
 
 

Week 2

It's now Friday of the second week of school.  We've settled into somewhat of a (temporary) routine.  He gets up, eats breakfast, gets dressed, I pack his lunch and get his backpack together.  His 50 lb backpack.  Ok, not sure if it's 50 lbs - but that suckers heavy!  So what goes into it?  A laptop and power cord, lunch box, sweatshirt, bottle of water, spiral notebook that his tech writes in about his day, ipod, gameboy, and I don't know how many little toys that are part of his current 'collection' of must have treasures.

Then we wait for the transport company to come pick him up. Actually, this morning we waited because we were ready at 7:30 am because they said that's when they would get here.  He left at 8. That's been the biggest issue this week.  They've showed up anywhere from 7:30 (when he was barely out of bed) to 8:15. Each time us not knowing exactly when he would be picked up.  Yesterday morning I packed his breakfast to go since they were sitting in the driveway waiting for him.

In their defense, I am much happier with this company than the last one.  Communication is key and they are really trying to work out a good route for him.  The logistics of transporting so many different people to different areas at different times can not be easy.

So he leaves and gets taken to the developmental agency where he meets up with his tech (developmental therapist).  From there they go over to the schools computer lab and start working on his assignments.  They do math, science, language arts, ect.  This is all done on his laptop with the programs that the school is using. Then they go have lunch somewhere and usually go do something outside or go into a store and practicing being out in the community. At some point they also play, have lunch or socialize with other kids at the developmental center or at the school lab.  Then the transport company brings him home about 2:30.

When he gets home, it's like last year when he came home from school.  He unloads his stuff, maybe has a snack, then runs off to be alone and do his own thing.  Decompress time.  Then we just move onto our daily home stuff.

I say this is temporary because I'm working on what I believe would be a much better schedule for him.  For the sake of sameness and to be doing something while I coordinate all of this, I kept his morning therapy schedule. *see a couple of posts down if you don't remember the schedule I am referring to*

I've made some progress this week on it.  Since his old school approved him coming back for morning specials classes (PE, music, library) I needed to get him afternoon hours for therapy.  That required a staff change and I wasn't sure how long that would take. A few days ago they let me know that they may have a possible match for us right here in kuna.  That would be great because she could come and get him about 12:30 and they could go out to the computer lab, developmental center, or do stuff right here in town. And, he wouldn't need a transport company anymore!  The only question now is - is she a good match for Will.  We will find out on Monday when she comes over and we can meet.  If it all works out then probably starting next week I can start taking him to specials classes, doing some classwork at home with him, then he goes with the new tech for a few hours.

The online classwork is another thing.  I haven't really gotten a chance to do any of it with him or observe him on it because he's been doing it with his tech in the morning.  My intention on doing this type of schooling was to be more involved in his classwork. So ultimately I didn't want him going off and doing it all with someone else.  I want to share that job.  But him coming home in the afternoon and trying to do it with him then just doesn't work.  So I really need him home with me in the morning so I can work with him at that time.

Also, I think we've got his long time speech therapist contracted with his new school.  Which means we won't have to pay out of pocket for it anymore and he can get it once a week instead of once every other week!  That's good news.

Boy, still kind of confusing.  But I believe it will work out.  We'll just keep swinging through it till we're flying high.

 

 

Are you kidding me???

Well, I THOUGHT I had the transport situation worked out.  Apparently that's not the case.  I wasn't going to go into detail about why we were so unhappy with the first company (we'll call them T1), but now that it's a bigger issue I'll explain.  The biggest problem was the lack of consistency.  Everyday, no every pick up and drop off, was a different driver.  Let alone the fact that most of them looked like they were either picked up outside the local prison, immigration office, or nursing home.  Sorry.  I'm not usually so outwardly judgemental, but when it comes to my kids and their safety you'd better look like Mr. Fricken Rodgers.  So different person and different vehicle all the time. Unsettling to me and unsettling to Will.  Not only that but half the time they couldn't find our house, showed up at different times, and once even tried to pick him up in a different city. Not so comforting when you see distracted drivers on the phone trying to figure out where to go with a van full of kids.  So we called and talked to a supervisor and asked for at least the same few drivers instead of a different one each time.  Finally they sent the same guy for awhile.  Then they started having issues with being paid from Medicaid - not just this company but all services being funded by medicaid.  So our current driver isn't getting paid so they cut back his hours.  Then the supervisor shows up to pick up Will.  He ends up locking his keys in the running car in our driveway.  Luckily Will hadn't gotten in yet.  Yeah, not confidence building.  We are so done with you guys.

Once fall starts we decide to go with a new company.  Like I said yesterday - this new company (we'll call it T2) is a stark contrast to what we are used to.  They try and keep the same driver on the same route so the kids get to know them, they have newer cars and vans (I forgot to mention that most of the vehicles with T1 were older and seemed to have no air because Will came home hot and sweaty each time), you have to sign them in and out (again T1 was practically driving away most of the times I was opening the door for Will).  So we happily switched companies before the whole transport shebang was being taken over by a state run company starting today.

Everything went great yesterday.  This morning T1 shows up - with yet another driver I've never seen before.  I kindly explain that we are now with T2 and he says, nope - everyone goes through 'state run company' now.  It all goes through them, they do the scheduling and you never know what transport company is coming.  Huh???  So not only do we not get consistent drivers, but not even a consistent company??  You've got to be kidding me.  I call T2 to confirm they are still coming.  Yes they are.  Send T1 away, but not before he tells me that T2 will be in violation and could have their license revoked if they pick him up.  Sorry charlie, I'm not sending my kid out with an angry old man who's fed up with the system and now with incompliant parents.  Buhbye.   So, thank you very much government run transport companies.  We are down to shuffling around our disabled community like they are cattle in herd.  What happened to small companies who have a sense of community and relationships?  So frustrating.

William was finally picked up by T2, a nice lady who assured me that this company was also bringing him home.  Hopefully we can get this figured out or we will not be using any transport service.

I'm home alone. Just went out back to pick some tomatoes. I can hear all the kids out at recess at the school. A tinge of sadness comes over me realizing that Will isn't there. Then I wonder what he would be doing if he WERE there. Playing by himself? Being upset because he couldn't get to the swings? Chasing someone who doesn't want to be chased? How long would it take to redirect once he was back in the classroom? Or would be so overstimulated by the chaos of recess that he would need a break in the resource room? I guess it's not really a sadness of Will not being at the old school. It's more of a sadness that he's different. That what seems to work for so many children doesn't work for my child. But I don't let that sadness take over for long. Reasoning steps in and reminds me that I'm doing what we feel is best for him and we will continue to re-evaluate and try again and again and again...