Taking the Scenic Route

Last Day of VBS

25th June 2010

Last Day of VBS

The kids really enjoyed VBS this year.  Zach and I were only there for the last day (to help watch kids on the blow up waterslide, for safety), but both kids came home happy and tired each morning, and Zora even took a few naps this week.

Zane had a jr. high girl that hung out with him all week to help him, and I was so thankful.

The group in the sanctuary, there were about 30ish kids this year, a group size that works so much better than the enormous group at the other church last year.   They did several hands on service projects, one of which was making backpacks with hygiene supplies (for Youthville) and a pillow, and it took a lot of explaining to get both kids to understand that they weren’t taking them home with us.  :laughn1: Early in the week I didn’t know what the project was, but I was pretty sure that they weren’t going to bringing home the toothbrushes, soap, and “special backpack” they kept talking about.  I was very glad to see a variety of projects like that because it stimulated a lot of good conversations this week.

The one project that we were there for was writing cards to send in care packages to soldiers.  (and I plan on taking pictures of the other crafts, but my camera batteries need to be recharged first, so it will be another post)

This is Zora’s card:

And this is Zane’s card.  It tickled me.  (it is a stickman style maze/obstacle course, including an exit)

And some crafts from the week:

And, for the final hurrah, the waterslide

The remarkable thing about this picture is that it isn’t as remarkable as it once was.  Zane standing in line, something I wasn’t sure if I would ever see a short while ago.  It’s those little invisible victories that make life so great.

The big kids helping the littler ones up the slippery stairs.

And when did my girl sprout legs like that?  She is growing so fast.

Zane struggled to get up there, but he was so happy at every step.

Taking a break to enjoy some birthday cake.  There were a handful of birthdays this week, and both of my little stinkers tried to claim it was their birthdays too.  (both are fairly obsessed with birthdays and parties right now).  :laughn2:

I love this church.  I am finally starting to feel like a member of the community there.

posted in Autistic Life, Church, VBS, Zane, Zora | Comments Off

24th June 2010

Backwards Day

The Group Picture from Vacation Bible School. Notice anything odd?

How about this:

Smiley camera-ham girl  vs.  trying to get a good photo is like catching lightening boy

Amazing, isn’t it.

posted in Autistic Life, VBS, Zane, Zora | Comments Off

27th July 2008

Kid’s Creativity: VBS & Church

Zora made this. The reason it looks so beat up is because she keeps carrying it around with her.

I helped Zane make the basket. He understood how to do it, but didn’t have the fine motor skills to really do it well. He directed me when he wasn’t doing it.

The woven mat Zane did totally on his own. Very cool craft for him.

posted in Art, Church, Crafts, The Kids, VBS | Comments Off

23rd July 2008

Different Perspective

This story comes from back during Bible School, and I kept forgetting to add it.

There was a boy there, about Zane’s age (not in Zane’s exact group, but in a group we were rotating with) who was causing difficulty.  I wasn’t able to look outside Zane much, but this guy had sort of caught my radar to a degree already on the first day, but the second day was our first run in with him. 

One of the group games that day was for two teams of kids to line up in between two buckets.  The front bucket had water, the back one was empty.  The first person in line grabs this big sponge, soaks it and starts passing it back.  As it gets passed back, the kids alternate between putting it over their heads and between their legs to pass it to the next person. When you get to the last bucket the sponge is squeezed out and then passed back to the front of the line. The team with the most water in the back bucket wins.

This kid ended up in front of us and was upset when Zane wasn’t able to do his pass without me helping him figure out how to do it.  (it took him two passes to really get what to do and then he was fine).  This kid started making comments that made the Mama Bear and the former bully victim rise up in me and it was everything I could do to remain calm at that point.  He was whining “why does he (Zane) have to be on our team, we are going to lose, it’s not fair…” and on and on.  Like I said, at first it made me irrationally angry, but I managed to get out something eloquent like “Winning isn’t important as everybody feeling included and having fun” and “Jesus cares more about people not having their feelings hurt than winning”.  He kept arguing back that “not winning hurts my feelings”, and another host of “not fairs” and sundry other complaints about Zane’s presence. 

As I watched him failing to notice it was his turn (and Zane just doing fine) a few rounds, I calmed down a bit and I realized that *something* was up with this kid too. He was so incredibly fixated on Zane doing it “wrong” (long past the point where Zane actually was doing it wrong) and losing the game that he kept having to be prompted to pay attention and not able to complete his turn correctly either (he would just grab the sponge, get confused, and just hand it to Zane instead of doing the over the head/under the legs thing). I also got the distinct impression that this boy was probably repeating things that had been said about him and was desperately trying to position himself as “above” Zane in the pecking order.  My heart really softened to him when I realized that he probably spent a lot of his life as the victim instead of the bully.

There were a few more incidences like that during the recess time (although the others were from afar because I made sure that Zane wasn’t next to him any more).  At the next activity, another helper person tentatively came up to me and asked if I was that person from the tv interview on autism.  lol.  In the course of the conversation, she told me she was a teacher and supposed to be just floating, but had spent an inordinate amount of time with this boy and wondered if I had noticed anything a bit off.  I told her about the race, and that it seemed like he responded better when you really broke down the language and was very literal and direct to get him to respond more appropriately.  (btw, it wasn’t done in a gossipy way at all, more of a “I suspect you have experience in more difficult behaviors and can brainstorm with me on solutions”) 

Later, after the snack, while we were watching all of the kids run around like crazy people, I had a similar conversation with the preacher’s wife.  She said that she found he responded very well and calmed down when she gave him big hugs.  I was genuinely excited to hear that she had found something that reached him and said so.  Luckily, I didn’t complete my sentence, because she followed with something along the lines of “love making a difference…”.  Well, that’s totally true. However, in that moment I had to stifle an amused giggle because I realized how strongly our experience in life changed our perception of the exact same incident.  She was seeing “troubled kid, love makes all the difference in behavior” and I was seeing “sensory seeking kid, deep pressure (and concrete directions) makes all the difference in behavior”  lol.

posted in Autistic Life, VBS, Zane | 3 Comments

3rd July 2008

A Good Day at VBS!

As I predicted, Zane would do a lot better at VBS about the time it was going to end. lol.  He had a good day today.  He loves the singing and doing the actions to the songs, had a great time participating in a game of duck, duck, goose, fed a goat, played with some clay and generally had a good day. 

Speech therapy this afternoon was like the same old Zane again too.  The ST was prepared for another meltdown, but he was back to normal again.  A good thing.  In ST he did an experiment and participated well in the games and such.  When we went to pick up Zach, both kids chanted “DADDY!” in the back seat every time we drove past his building (I had to make loops waiting for him to appear because the loading zone was occupied by other cars). 

The only meltdown of the day was the quick diaper change after picking up dad and before going to his evening speech.  He also unbuckled his seat belt on the way there and I had to pull over to refasten it when he refused, but even though he was complaining about the seatbelt, he was mostly fine once we got there, and in a good mood again once in the ST’s room. 

We are all now home and happy.  I am glad he had a better day, but I am also very glad the week is over.  I think I am going to order the CD from the VBS program because he really seemed to like them. 

I couldn’t possible manage my regular camera during the bible school, but I did have my phone camera and would occasionally remember that it existed and take a picture.  So, here are a few pictures, although none of them are great.

Doing actions with the singing

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Waiting with the group for the game activities to begin

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Playing a game (the one I talked about yesterday)

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Watching the weavers and spinners

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posted in Autistic Life, Church, Music, The Kids, VBS | 1 Comment

2nd July 2008

Today Zane is 6 years, 6 months, 6 days old. Appropriate.

Noticed the ticker this morning and laughed.  Looked at it again after bible school and it seemed appropriate. 

As I was pulling out the drive way this morning, when I turned, something sharp cramped in my back.  Shooting pain.  I didn’t have any ibuprofen on me either.  My dear husband put his warm hand on the spot and I really tried to relax my back as much as I could.  Not a great start.  After I drop Zach off I take the kids to breakfast.  (this week was the first time Zora has seen a McDonalds, the 2nd or 3rd time for Zane…one of which was meeting Bede and his family at a playdate years ago…not because of some ethical issue like other boycotts, but because it is nasty.  lol).  I got everything ready for the kids and went to sip the coffee and about passed out from pain as it hit “the” tooth (The same one that started giving me problems about 2 days after our insurance ran out)  Yeah me.   At least I didn’t spill the coffee today…I didn’t realize how flimsy the trays were yesterday and tried to grab it with one hand…the former waitress in me was horrified.

There were some really good moments today.  He loves the singing part and did a pretty good job of doing the actions along with the song.  He did a great job when they played a game sort of like musical chairs…you walk around a circle on rug squares with numbers on them.  When they stop the music, they call out a name, and if you are standing on the number, you go get some candy.  Not only did he do it with almost no prompting, but he didn’t complain when others won, and he went to get the candy when they called his number.  I was proud of him. 

During craft time I started to smell something.  Lovely.  Ended up having to go out to the car to change his pants after that one.  We went back and had snack and he didn’t want to eat the grapes and apples, two of his favorite things, which is very weird for him.  After snack is story time, but I had decided that we weren’t going to attempt story time (he knows as soon as he hits the room that it is just story/sitting and listening time and I saw an actor dragging a cross around the hallway earlier when going for the diaper change and realized that it was probably supposed to be more solemn today…not a good mix with a boy who will fight being in the room.)  That turned out to be a great decision.  While we were sitting there watching the weavers (and actually helping her spin bobbins) I heard, then smelled something very, very bad.  Even worse than the first time.  It was liquid and horrid.  I got him changed, he was screaming because it was hurting him, so we just went and got Zora and left.  It was almost time to go anyway by the time I got him changed.

I decided to just pick up Zach for lunch and go home so that he could drive himself back from work later.  Originally I was thinking of going to Exploration Place in the afternoon before picking up Zach, but Zane needed to be home more, and I don’t want to deal with diapers like that in public if I don’t have to. 

Back home now.  I have Ibuprofen in me, Zane is happily watching some Mario Bros. videos and Zora is playing in the playroom and occasionally bugging Zane (I hear playing noises, abruptly interrupted by “No Zora!” and “Mine!” and such.  lol.)  So, back to normal.  I am achy, but it is manageable, Zane seems comfortable and happy.  (love Butt Paste…miracle butt protector). Zora took a nap in the car, but won’t go back to sleep and I am now at the threshold where I hope she doesn’t fall asleep any more because it will interfere with nighttime sleep.

posted in Autistic Life, Church, Stress, VBS, Zane | 1 Comment

1st July 2008

A bunch of Gentiles at church. lol

The vacation bible school theme is about the streets of Jerusalem.  So far, they had the Palm entrance (Palm Sunday on the Christian Calendar) and today they were talking about the Seder and Passover meal, leading into the Last Supper and what communion is about.  (I thought for a minute there they were going to actually serve communion, but thankfully they stopped short of that). 

Every day they have market place tents set up showing different trades and skills of the day, with an activity the kids can participate in.  (like pounding nails into wood at the carpenter shop, making a necklace with some beads at the merchant, smelling and touching the herbs (or grinding some with a mortar and pestle) at the food stand, etc) and almost everyone is in costume.   It is pretty cool.  They also have games outside that don’t really keep with the theme, but provide some much needed active time.  They divide the kids up into groups named for the 12 tribes.  I was hoping to be in Zebulon’s tribe (it was in consideration when we named Zane), but, alas, we are in Joseph’s.  lol.  When we have snack, they have a mezuzah and were explaining that it was used in Jesus’ time and you are supposed to kiss your fingers and touch it when you enter your home  (Isn’t that still done?  I was thinking that I had seen those at friend’s houses, but maybe I just have weird friends. ) and we pretended to enter and exit our “home” (blanket on the ground) where we ate.

The snack today was a large piece of matzo with cheddar cheese on it.  I sort of giggled inside at the use of cheddar, but considering the weirded out reactions to the matzo cracker, I understand why they didn’t go with goat cheese or something like that.  The funny thing was that I was the only person in the group that knew what it was.  (and could pronounce it).  I explained that it was unleavened bread (and then explained what that meant), but they were a little hesitant until I said it was basically a big cracker with cheese.  lol.  Zane, of course, dug right in.  Matzo was not unfamiliar to him, although I don’t think I have ever put cheddar on it.  (was good though). 

The part that made me duck behind Zane to conceal my giggles though was when they were doing the story time.  To set the scene a little…it wasn’t going well at all for Zane and I at this point.  He had done really well in all of the other activities, but this was the last thing of the day and it is the story time.  When they sat a big plate of food in front of him and he wasn’t allowed to eat it as he wanted, it wasn’t pretty.  They were going through what each item was on the plate and it’s symbolic meaning.  I wish the meat would have been sooner because that is what was causing the ruckus.  (grunts and yells of protest, me wrapping myself around him to keep him from lunging at the meat, with him protesting loudly) and when they FINALLY got to the meat, she asked the kids what kind of meat they thought it was.  A few kids offered “beef”, and after a “no”, a whole group of them yelled out “PORK! and PIG!”.  Maybe it was because of the absurdity of trying to keep Zane from diving into the plate, but that just made me choke back laughter.  None of them could come up with what it was, so I finally asked what the shepherds did in the bible, which finally lead to saying sheep/lamb.  Finally, a right answer, so everyone could taste the meat and I could let go of Crazy Boy and he could have a bite.  I was impressed that he only took a small bit instead of grabbing it all in his hand.  I tell you what….THAT is progress my friends.  The funny thing was that only one other boy (the one who bravely downed the horseradish) was willing to try it, so Zane got most of it any way.  lol. 

 

The rest of the day

Not great.  (understatement)

We had time between bible school and speech therapy to eat and change diapers, and not much else.  Zane wanted to play his Nintendo DS and was not listening when I gave him the warning countdown that he needed to save the game and close it up.  Right before we were ready to go out the door, I had to change one more diaper while telling Zane that he needed to shut down the game NOW.  Still not listening, so I took it out of his hand, closed it, and put it up high.  (something I almost never do because it is not good for anybody…but I was hoping that the meltdown would resolve itself on the trip to ST so he had time to pull himself together before ST).  Well, it didn’t go well.  It was like a cartoon character trying to get through doorways.  He was screaming, I was carrying, he was expanding his body and limbs so that it was a major feat to cross a threshold. 

It wasn’t over when we pulled up to ST (late I might add, because of the drama of getting him out of the house and wedging him into the car and trying to snap the carseat straps shut with every ounce of strength I had).  He wouldn’t get out of the car.  Once out of the carseat he dived towards Zora’s side of the car and I had to drag him out of the car too (with the same uncanny ability to make himself too big to get out the door).  As I carried the full blown meltdown to the door, I see the face of the student speech therapist who was waiting for him. (terror) I got him in the front door, told her I had to go get Zora out of the car and that if she needed to pick him up she had my permission.  I went back to retrieve Zora and some change for vending machines (planning on a cookie bribe to get her to come into the observation room that she hates) and got back to the door…she hadn’t even made it halfway across the lobby with him.  I told him that he needed to stand up and walk, or we were going to carry him.  He refused, and she picked him up (I was carrying Zora).  I went down the hall with her just in case she lost control and to open the door for her. 

When I opened the door the clinical educator was wide eyed and commented that she couldn’t believe that was Zane (that she heard yelling all the way down the hallway) because he has never done that in the 2 years he has been going there.  I knew she was going to be able to handle him just fine (and he did calm down fairly quickly), but I also knew I needed to let her know what sparked it all so that she had something to work with. 

I was able to see most of the ST with the cookie bribe.  I managed to miss the biggest dramatics though while getting another bag of cookies for Zora and then convincing her to come back into the room.  (I almost never use bribes of any kind, but I was at that point today).  Apparently, on the list of things to do today was to help him deal with losing a game.  The poor ST student…can you imagine having a start like that and then finding out that you still have to let him lose the game if that is how it goes (he is playing another autistic girl and they are working on playing games and sportsmanship) and then seeing that he was, indeed, going to lose.  She got a trial by fire today, but the Clinical Educator worked really closely with both of them to help pull out PECs cards to help him identify and express emotions a bit better.  He still had a really rough time, but was able to pull it back together again. 

I HATE HATE HATE days like this.  I hate seeing him upset and it just hurts so badly to see him struggling so hard.  He was smiling through more of the session than not, but it was still hard. 

It was easier getting them back into the car than it was getting them out, but I knew there was no way I wanted a repeat scene of earlier and I had about the same window of time.  I decided to go to downtown and stop by Exploration Place (we were wanting a family membership again anyway) since it was near where Zach was working.   I got down there and look in the back seat to see both kids fast asleep in the carseats.  Not a huge surprise with Zora, but seeing Zane asleep is a rarity these days.  He was REALLY worn out.  I parked under a tree, opened the windows, and dug Zane’s maze book out of his backpack and read it while they snoozed.  Eventually they woke up and we still had about a half hour to kill, so we got a new membership and looked in one wing of the building and then went to get Zach from work. 

The evening

better.  Zach grilled some burgers, Zane is playing his Nintendo DS, Zora is playing independently.  Robert stopped by after supper and we will watch a movie with him as soon as I get off the computer and get the kids to bed. 

 

posted in Autistic Life, Church, ST, VBS, Zane | 4 Comments

30th June 2008

Vacation Bible School Begins

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).

posted in Autistic Life, Church, Stress, VBS, Zane | 1 Comment

  • Zane's age

  • Zane is 22 years, 9 months, and 16 days old
  • Zora's age

  • Zora is 18 years, 9 months, and 20 days old
  • Random Quote

  • “you don’t look autistic!”

    Yes we do. You are just grossly misinformed about what “autistic” looks like.
    — Brigianna (MDC): Autistic, with Autistic child

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