Taking the Scenic Route

Let me start with:  the “Vacation” part of the name is really misleading.  lol. 

It went alright.  We had a rough start…while I was dropping Zora off at the nursery, Zane walked away from me.  He was there one minute, and disappeared the next.  The crowd was FAR more than I was anticipating too.  I started to look for him in the crowd, then quickly realized he probably headed the other direction given the noise and chaos.  Sure enough…he was outside, walking the perimeter of the landscaped island that defined the drop off drive area.  It took some convincing to get him to come back in.

For the most part, he did fairly well, especially if you take into consideration the amount of noise and chaos there.  They had actions to the songs in the big room (the area that is usually the sanctuary, with all of the chairs removed) and he followed along better than I thought he would.  He was able to participate in most of the activities, although a few of them were just too challenging for him on his own (carrying a plastic teaspoon of water from a bucket to a 2 liter bottle about 20 feet away…the water stayed for about 3 steps.  lol.  I helped steady his hand and we walked back together with the spoon).  The weaving activity he did well at, even better than some of the kids around us.  He also was able to put three little beads on a little string to make a necklace…all of the painful hours I have spent working with him on threading paid off…yeah!  The most challenging part of the day was getting him to stay with his group, but I could hardly blame him because you really had to pay attention to your group because there were just too many people going every direction. 

It was worth it, but it was hard on me.  When I finally got both kids back into the car afterwards I was choking back tears from the stress and sadness of seeing that gap widen between him and his peers.  I was also very proud of how far he has come though.

I think he liked it, at least most of it.  The church really did a nice job of organizing it and making it interesting for the kids…I was impressed.  We will be back tomorrow, and I suspect it will go a little better.  Of course, by the time he really has the routine down, it will be over. (it is Mon-Thurs, just this week).

To answer a question in a comment:   no, Zora did not put the puzzle together herself.  For some reason, Zora sees puzzles as an entirely social activity.  She won’t do them without an audience and a helper.  lol.  So different than Zane where puzzles would entertain him for hours of independent play.  She wants me to put them together, then she will take out one to three pieces and put them back in, with a big “HURRAY!” and glance over to see if I am watching her every time she connects a pieces.  We did go out and get a few more puzzles to do because the Thomas puzzles were causing us to go through a lot of bandaids. 

I am very glad to see her being able to connect a few pieces though.  I was a bit concerned a few months ago when she couldn’t put a large round piece in a large round hole, even all it would take was a little nudge to drop the piece.  At the same age, Zane was putting together 100 piece puzzles.  That was unusual, but the extreme inability to do a puzzle had me a little concerned too.

A study in opposites

I think she is trying to tell me to buy some new puzzles.

And, in a sweet ending for the evening, Zane requests a camp out

Good night sweet prince.

I haven’t been posting much (and have a backlog of emails to answer at this point) because I am spending every moment not dealing directly with kid with my nose buried in books, websites, and academic papers, both on autism and parenting in general.  The ST program I want to get Zane (based around the papers I was reading, and then the website it lead me to) costs more than I can afford, but it really looks good.  I am going to dig my nose through a copy of it at the university tomorrow or next Wednesday (one of the other clinical educators just ordered the program and one of her students is using it) and see if I can start with the main program (Visualizing and Verbalizing), or if he needs to go through the book written for autistic students to get them ready for the program (Talkies).  The description sounds like you are starting from a non-verbal/low verbal point (with labeling…something Zane has done since he was little, it just never formed into functional language like it does for most kids), but I don’t know if the main program starts at too high of a level for him.  I hope I can just jump into it because it is horribly expensive even if you don’t get the whole “kit” meant for teachers.   I’ll write more about the program later, as well as the parenting book I am trying to get through. 

If team members were asked “How many IEP meetings does it take to change a light bulb,” this what I imagine they might say:

Parent – “The light bulb is not the only thing that’s burnt out.”General Education Teacher – “No one said I was going to have to teach changing light bulbs.”

Case Manager – “If you hadn’t wanted so many hours of service in that room, maybe the light bulb wouldn’t have burned out.”

Transition Coordinator – “I think they cover that in life skills.”

Special Education Teacher – “We don’t need a light bulb, it’s not like they’re reading or writing.”

Special Education Director – “We’ll have to just keep changing his placement until we find a room that has a light bulb.”

Resource Teacher – “The side benefit is that we’ll have to bring them up from the basement.”

Teaching Assistant – “We don’t really need a new light bulb, there’s enough light coming off the television.”

School District Attorney – “The regulations don’t require light in the timeout room.”

Dean of Discipline- “Is there supposed to be a light in the time-out room?”

Assistive Technology Team – “First, we have to determine that the light bulb’s really burnt out and then we can trial a flashlight.”

School Nurse – “I don’t know how many it will take to change the light bulb, but all the special ed children will have to go home until we do.”

Secretary at the meeting – “O.K. then, how many minutes of light are we allotting in the IEP?”

Special Education Director – “We are willing to provide nightlights and maybe open the door a crack; we feel this is more than educationally appropriate and all Rowley requires.”

Teacher – (Sobbing) “What do you people expect from us anyway!”

Parent – “I don’t understand why you’re being so difficult, it’s not like we’re asking for a chandelier.”

School Psychologist – “The children are just lazy. If they really wanted to learn they’d study by candle light like Abraham Lincoln.”

Janitorial Custodian – “I’d like to help you, but I’m not a part of the IEP team.”

Dean of Discipline – “I’m just here to make sure we write it as ‘change the light bulb.’ The minute anyone uses the word, ’screw’ this meeting is over.”

Special Education Attorney – “The light bulb is the least important thing that needs to be changed in that classroom.”

We told her to finish up because it was time to go to bed.  She protested loudly that she wasn’t tired and didn’t want to come in.  We gave her five minutes and returned to find this:

 We had to go to Mac today to pick up Zach after work because he had to drop off the company car today.  After we picked him up, we went to Joy’s store (she wasn’t there, still recovering) and saw my mom and Steve.  Mom/Grandma helped the kids paint some pottery (will be fired later), then we grabbed a bucket of chicken and went out to the park for a picnic.

We are still working on getting used to this sleeping schedule.   It is getting better, but dang, I am tired!  We are such natural night owls and this is taking some getting used to.  I need to go to bed, but I expect to have some photos tomorrow, so I thought I would post the stray photos taken over the last week here.

Climbing all over daddy after work.

Making a “snake” from an egg carton from his Animal Habitats book.  (self initiated…I was playing with Zora and he brings me three eggs from the carton, not knowing what to do with them.)

My daredevil hanging from the top of the tornado slide at the church.  (on a cool note, Zane finally figured out the motor planning to climb the rope net that leads up to the slide this week without help.  He has been bravely working at it for a few weeks and was rightfully very proud of himself.   Zora followed him up on her own too, but she is without fear, so although it was a bit scary to see her little body scaling the thing, I better get used to it.)

A sight I never thought I would see…Zach in a hardhat.  He was touring the new warehouse they are building for the company he is working for.

She came through surgery just fine.  It was a couple of hours (can’t remember exactly how long right now) and they found three different nerves causing problems.  They were able to get the two bigger ones,  on opposite sides of the heart, but weren’t able to pinpoint the smaller one.  It should be a significant improvement though. She will be in the hospital for a few more days, possibly into the weekend, as they wait for her blood to thicken back up to a more normal level.  (she will still be on blood thinners, but not like she was for the surgery)

For a while now, Zane has been disturbed by Zora not wanting to wear a diaper and will follow her around with a diaper until she puts one on.  Today Zora returned the favor by following Zane around trying to get him to wear shoes.  Zane didn’t want to wear shoes, so when I explained to her that he could choose whether or not he wanted to wear shoes at home because it was his body, just like she could choose whether or not to wear a diaper because it is her body, she pouted.  Then, after a few minutes, she took off her diaper.  lol.