Taking the Scenic Route

Thursday May 11, 2006

11th May 2006

Thursday May 11, 2006

more Zane notes:

tonight while Zach was making Zane a burger for supper, Zane came to investigate, flipped the burger over a few times, and then told Zach “cheese”.  He wanted cheese on the burger and told us. 

for OT:  we are supposed to give him normal size crayon pieces for him to draw with.  if he uses his whole hand to grasp, have him hold a penny or small toy with his pinky and ring finger while he draws.  we are also supposed to play with him so that he lays down on his tummy and supports himself on his elbows while playing to build upper body strength and coordination to aid in writing.

we need to finish up the visual schedule thing for zane and start using it for zane. 

today when zach dressed zane, he just held up the shirt instead of putting it over his head and he figured out how to get it on.

zane is playing obsessively with this sound effects elmo toy from the neighbors.  He closes a door, rings the ‘doorbell’ sound, and then opens the door.  I played with him a while opening the door and saying ‘hello’/pretending to hear a doorbell and wondering why there was nobody at the door, and making up actions to the various sound effects on the toy.  He didn’t join me in most of the actions, but did get a huge kick out of me doing it.  Great eye contact and was really engaged.

we got him a cheapo little tea party set tonight and he played at pouring tea and pretend drinking for a bit.  He also went to the bathroom to get water to have real liquid instead of just pretending.

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11th May 2006

Thursday May 11, 2006

YMCA Tumble Tots

My initial reaction this morning during the class was that it was not going well.  It is a parent participation class that he actually aged out of with his last birthday, but the gymnastics director thought he would fare better in that class than the one appropriate for his age.  The normal teacher of the class has an autistic son, which is a bonus for us.  (there was a sub there today, so we will meet the teacher next time).  The last time we took the class I learned that I need to be front and center or he can’t establish focus on the teacher, so we sat right in the middle in front of the teacher.  He was able to focus on the teacher this time, so that was good.  However, the class starts with singing and doing stretching and exercise to the music.  It was too much for him in short order and he sat with his legs in a butterfly position and collapsed down with his chest on his feet (his flexibility never ceases to amaze me) and covering his head to try and escape the music and movement.  Every once in a while he would come up and join a bit, but most of that first part was spent on the floor like that. 

When we broke for playing on the equipment he did much, much better.  He was pretty good about waiting in line (with prompting) and did a good job performing the physical tasks. 

Then they had parachute time.  He got overexcited with shaking the parachute (thank goodness they didn’t have balls bouncing around on the parachute…oy, that would have been nuts!).  We started singing some kid’s song (like ring around the roses or London Bridge…something familiar, but I can’t remember what it was right now) and walking in a circle, holding the parachute.  Then the adults were supposed to lift up the parachute and the kids were supposed to run around under the canopy.  Uh…yeah….he ran in happily excited, but then kept running out the other side and to the other side of the gym.  I got him back about the time they lifted it again, but caught him sooner as he bolted out that time.  I got down and told him that he needed to come back to me the next time he ran under the parachute (while she was giving instructions that I missed because I was talking to Zane).  We hooked on again to the parachute and walked in a circle, like before, with me walking next to Zane to help direct him better, and they lifted the parachute….before I knew what was happening, they were all closing the parachute down behind them, creating a dome with everybody, except me, on the inside of the parachute.  Total panic struck me.  Zane was inside a chaotic, closed environment and I was on the outside.  I ran around the parachute looking for a spot without the lump of an adult and ripped it up looking for Zane.  Evidently, Zane had the same idea and had found a way out the same time I found a way in because all the adults pointed to where he had just left.  He and I met as I ducked back out of the parachute.  He looked pretty scared (I imagine I did too).  That sucked!

We then played on scooters for a bit, and messed around on the equipment a bit more.  The last bit was singing like the beginning.  He wasn’t very happy, but wasn’t crying or anything either.  He kept saying “all done, all done, all done”. 

Now, you can understand why my initial reaction was basically…”it didn’t go well, but we need to keep coming to get him used to it”  After I thought about it for a while though, I realized he really has made strides since the last time.  The singing has never gone well, except that before he would do everything in his power to get away physically…it was like wrestling an octopus, interrupted by sprinting when he would wiggle away, for the first 10 minutes I was there and I would literally be dripping sweat by the time singing was over.  He still didn’t like it, but he didn’t completely lose control and scream, squirm and run like last time.  He also paid more attention.  At the end, instead of the repeat octopus wrestling, crying, and bolting, he verbally expressed his desire to leave, but stayed there when I told him to wait, it wouldn’t be much longer.  He didn’t actually cry once the entire class and I didn’t hear him screaming during the parachute disaster…he just found a solution and came to me, like I had told him to do.  So, in retrospect, it showed progress.  I hope it goes better next week though.

Occupational Therapy:  Day One

This, in contrast, did go well.  He had speech therapy right before it that went nicely too.  This is the first time the therapist met Zane.  She also had a grad student in tow doing her clinicals.  We got to observe through a one-way mirror.  Most of what today was just for her to get to know Zane a bit and see where he was at, skill wise.  I could tell they were pretty shocked at his skills.  They are so uneven…the things he is behind on didn’t really surprise her (because of the nature of her work), but the degree to which he had advance skills, without the verbal ability, I think knocked her off her feet.  During the block building pattern matching they started out with something that *should* have been a bit of a challenge, but not too much.  He got it…they looked pleased.  They made a more difficult pattern, he imitated it immediately and they seemed pretty surprised.  They then jumped up a bit, with a higher tower and more intricate design.  He built two stacks of blocks instead of one that they did, and the phrase “that is almost correct/right” got stopped halfway through the word “almost” when he lifted one entire block wall, placed it on the other wall, creating the correct pattern.  Their jaws literally dropped and both commented, obviously without thinking, that they had never seen a kid that age do that.  It was pretty cool. 

Later, when we talked, they said it was mentioned that he had ‘good block building skills’, but they had no idea he had that level of strength.  Then we went through the things he was struggling with so she could make a plan of what to work on.  Even as we were leaving, they were still shaking their heads and commenting about the blocks.  I told them that was one of the primary challenges we were having with him….he demonstrates astonishing brilliance in some areas, but doesn’t have the verbal…plus, when people test him, they start with easy things.  He is bored by those things and refuses to perform them, and the person assumes then that he wouldn’t be capable of the advanced tasks.  We had to find the balance between challenging enough to engage him, but not frustrate him so much he gives up. 

dora time Finally, a funny story….Last night at bedtime

Zach took Zane through the evening routine…picking up his room, brushing teeth (dramatic improvement on his cooperation since the dental surgery…yay!), reading books, then going to bed.  Zach initially forgot to brush his teeth and took Zane into the bedroom to read books.  Zane picked up this book (really cool book btw.  you can move the hands of the clock, press the ‘time’ button, and it displays the time in digital and says the time).  The book has buttons that correspond to the story that say things like “Time to wake up/eat breakfast”…ect.  Zach saw the tooth brushing icon and realized he forgot to brush his teeth, so he went back to the bathroom to get the toothbrush.  When he walked in the bedroom with the toothbrush, Zane turned to him and opened his mouth wide open.  Just as Zach touched his teeth with the brush, Zane pressed the button on the book that announced “Time to Brush my Teeth!”  and then laughed heartily as Zach reacted.  After a good laugh, Zach complimented him on the great joke, and both of them giggled through the tooth brushing.  It was great!

 

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9th May 2006

Tuesday May 9, 2006

This morning Dad and Mom came to fix the car.  I wasn’t expecting them nearly so soon, but it rained, so they couldn’t get into the field anyway.  (although I am sure they had better things to do with their time…lol)  Our car is once again road worthy.  It will need some rubber piece for the motor mount in the future, but is fine to drive for right now.  He was able to fix the leak in the transmission too…it was just a loose nut on a clamp.  (thank goodness for small fixes…we just had the transmission replaced when I was pregnant with Zane).

Our neighbor gal helped fix the car.  She absolutely LOVES fixing cars, but her dh is a mechanic and never lets her help.  Her small fingers and good eyes were a great match for dad.  Dad commented that she was pretty dang strong too.  They worked together while Mom, Zach and I entertained her and our kids. 

She commented after they left, with a huge smile on her face, that ‘he never even yelled at me’.   I told her that is how she deserves to be treated…she shouldn’t have to put up with living in fear of being yelled at or put down.  I felt really sad for her that it would be so notable to her when a guy treated her decent.

She has wanted to get a certification to work on cars since I have known her, but her dh kept telling her that they ‘don’t hire women and he isn’t wasting his money getting her the certification’.  I have a feeling, after this experience, she might just do it anyway.  She absolutely glows when she works on cars.  It is uncanny.  She had never performed the fix that they did to the car, but she felt competent and really enjoyed herself.  I get the feeling she might follow her heart instead of letting people talk her out of her dreams…at least it is a step in the right direction.

x2006-05-09 011 car 

x2006-05-09 013 car 

x2006-05-09 014 car 

x2006-05-09 044 car 

x2006-05-09 056 car 

x2006-05-09 058 car 

x2006-05-09 071 car 

 

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9th May 2006

Tuesday May 9, 2006

Look ma, no hands!

x2006-05-05 012b 

After church on Sunday.  (Zane undressed within 3 feet of entering the apartment, so there are no pictures of him looking spiffy.  lol)

x2006-05-07 019 

x2006-05-07 029 

x2006-05-07 032 

 

Turtlenecks are not a great choice for a child with no neck.

Sporting the Boohbah Look

 x2006-05-07 086

x2006-05-07 064 

 x2006-05-07 045

 

Zane and his speech therapist.  (we had to take the camera to get a photo of her for Zane’s visual schedule).  This is taken through the one-way mirror, so it is a little hazy.

x2006-05-08 007 heartsprings 

Here is the update on our family:

  • Zach’s mom is recovering really quickly and has been home a few days now.
  • Despite a crappy day today, Zach’s semester is OVER (well, except for the grading and turning in grades and other teaching-related tasks)
  • Zach’s crappy day:  Had to go in early to meet with his ‘group’ one more time to turn in the project and some papers.  After that, went over to his appointment to get anxiety meds and waited.  and waited.  and waited.  and an hour after he should have been out of that office asked the receptionist if there was time for him to take some time sensitive paperwork to a prof before it was too late.  Since the two people who had appointments before his hadn’t been seen either, she told him it would be no problem.  He ran his errand and low & behold, both people had been seen and the PA had left.  The next appointment time is in JUNE.  Then he gave an exam to his class and came home.  I called another dr. office (listed on his insurance card, but he has never been there before) and they didn’t have anything available until the end of May.  I begged, told them he really needed to be seen sooner, and finally got an appointment at the end of next week.  Grrrrrrr.
  • Speech therapy seems to be going well for Zane. 
  • On the way home from speech today the car broke down AGAIN.  I really hate this car.  I wish there was some way to afford a different one, this is driving me batty.
  • Zane came through the MRI and dental surgery just fine.  I was infinity more pleased with the hospital and staff at Wesley than the people at St. Francis.  The latter made me so angry I can’t even really talk about it yet.  I hope I never have to go back there again.
  • Zora is still teething, but a guardian angel calmed her the nights before and the mornings during the surgeries.  She was much quieter and kept falling asleep right when I needed her to.  Nothing can explain that ‘coincidence’ except a bit of heavenly intervention.
  • My mom came with me to both procedures.  I am so thankful for her help.  Proof that being a parent doesn’t end when the kids leave home…she helped teach me how to advocate for my kids more effectively.  The only thing I would have done differently is had the doctor write in the orders to have Zane sedated (with Versed (sp?)) as soon as he gets there (Wesley listened to me without that written in the orders, St. Francis kept spouting off about ‘procedure’ and I had to get nasty before somebody finally listened).  She also was a calming presence for me and really helped with both kids when I had to talk to doctors.  I am so lucky to have her.
  • Church was a bit rough, but turned out ok.   When I dropped him off in the preschool room the person in charge said that her mom worked with ASD kids and she was around them all the time.  I went back up to the service and enjoyed a song and some of the service when I all of a sudden got ‘that feeling’ and went to check on Zane.  I came around the corner as Zane was being taken out into the hallway (pretty good distance from where I was at the time).  As I walked towards him, neither he nor the gal saw me, but I could see her trying to comfort him.  As I came up behind them I heard her saying “I will go find your mom for you”.  I think I shocked the heck out of her when I piped in and then gathered Zane up into my arms (as best I could since I was holding Zora).  She was so gentle with him and I appreciated how she was trying to handle things…taking him into the hallway away from the chaos of the room was probably what I would have done too.  After a bit he calmed down and I got him to get up so I could take Zora to the nursery so I could go with him back into the class.  The nursery had once of those older ladies where you just ‘know’ she is going to be fine.  (I checked on Zora several times and the lady was always engaged with her and Zora was happy as a clam.)  I went back in with Zane, and for a while, he just sat on my lap, then played with a toy on my lap, and eventually ventured back out again.  By the time Zach came back, he was doing pretty well.  Next week I am going to just stay there from the start.  Funny thing is, one of the other people in the nursery was a sophomore at WSU and a special education major.  
  • I am getting a handle on the housework.  The laundry has another marathon session tomorrow, as soon as we get some more detergent, but I might be able to finish it up tomorrow.  I am hoping to have this place together by the time I go to bed tomorrow, but we will see how it goes.  I can dream though.
  • Now the next chapter begins….long ‘to do’ list for getting Zach ready to go to NASA…..paperwork, financial aid, travel arrangements and tons of other ‘little things’ that need to be done before he leaves.  I sincerely hope we get things cleared up and in order in time for us to all enjoy a few days truly ‘off’.  The last time either of us has had a true ‘vacation’ is when our parents took us as kids.  The closest thing we had was a few days of ‘honeymoon’ where we didn’t turn on the tv or answer the phone for a few days (were unaware of the Okahoma City bombing for a few days) and the car trip when we moved from Kansas to San Diego a year later.  (hey…we stayed in a hotel and only saw each other for a few days…that counts, right?).   That was 1995.  We need a vacation!!!!!!  We probably won’t get a true one for at least another year, but a few days without a giant ‘to do’ list would do wonders right now.

 

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4th May 2006

Thursday May 4, 2006

This morning we had another first. dh dressed him, he got undressed (pretty normal). I got his pajamas instead (in case he was undressing because he was afraid we were going ouut right then and that is why he was resistant). I put on his shirt, he grabbed the pants, tossed them away, (this is where the new behavior starts…) paused, then went and picked them back up. Then he walked to the dresser, put his pants back in and pulled out a pair of shorts and brought them to me to help him put them on.

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4th May 2006

Thursday May 4, 2006

Evolution of Dance (comedy routine) 

 

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3rd May 2006

Wednesday May 3, 2006

Zach’s mom is doing really well.  She is eating and has been moved to a normal room.  Yeah!

Zane’s MRI and sedation went reasonably smoothly today.  Now, we just wait for the results, which should come by the end of the week.  I don’t know how long it will take to get the results from the blood work.  He was awake enough from the sedation to be able to go to speech therapy this afternoon.  He was a little off, but not too bad.  The therapist knew what was going on, so she was sensitive to the fact he might not be 100% today and adjusted accordingly.

We got a call today that an OT slot finally opened up.  It is only once a week, but at least it is something.

I think we may go ahead and do the sedated hearing test so we can be a bit more sure that his hearing isn’t the problem.  He is talking more and I want to know if his pronunciations are just because of inmaturity or because he isn’t hearing things quite right.  I suspect that it is more along the lines of inmaturity, but since he won’t cooperate for the typical test, this would give us better insight to what is going on.

Zach has a final tomorrow, then the major pressure of this semester is over for him.  He still has to create the test for next Monday for the class he teaches, and then grade it, but that isn’t as intense as taking tests.

The pressure is going down, although I still can’t wait until this week is finished.  I am not as worried about Friday after seeing him handle sedation today.  He didn’t have any bad reactions or freak out, which is something that is always a bit nerve-wracking the first time a person is given meds like that.   

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2nd May 2006

Tuesday May 2, 2006

Zach’s mom got through surgery with no complications.  She had a ‘beating heart’ open heart surgery.  She got through the critical time for strokes and they will probably try and wake her around midnight tonight.

Zach has a presentation tomorrow, a final on Thursday, I think some papers/projects to finish, and then he gives a final in the class he teaches.  The semester is almost over! 

Zane goes in for his MRI and bloodwork on Wednesday morning.  The test for mercury is not covered by insurance so we have to decide if we can find a way to pay for it.  It is $145 out-of-pocket.  yikes!  I really want to know though.  I will call the patient accounts tomorrow and see if we can do it on payments.  He will only be sedated for this, not all the way under.  He goes back to the hospital friday for the dental work and he will be put under for that. 

Zach’s appointment with the PA for anxiety meds isn’t until NEXT Monday.  Really helpful.  lol.  I wish he had the option of something this  week.  Although, I don’t know when he would fit it in.  I wish we could get him (and me, for that matter) some zanax or valium or something calming.  Calms Forte isn’t touching the stress in this household.

To add to this, Zora is teething.  For the last two-three weeks she spends the last 3-4 hours of the night screaming, unwilling to nurse, and unable to be comforted.  The sound is enough to send me over the edge.  Plus, every time we get a ’serious’ phone call, I have to take her to the bedroom or outside so Zach can hear himself on the phone.  Zane isn’t liking the screaming much either and will scream in frustration at times.  I would feel sorry for our neighbors upstairs if they weren’t such horrible neighbors…it actually feels more like they are experiencing some unintentional karma.  lol.  I swear they play football and bowling up there 24 hours a day.  (well, when they aren’t throwing their trash off the balcony, screaming insanely while chasing each other with water bombs and giant soaker guns, and spilling eggs and pop and other gunk things on the balcony that will fall through to us) 

Hmmmm…you know, our life does sound stressful right now.  I don’t think I realized how much until I wrote some of it down.

My poor baby girl.

x2006-05-01 012 teething 

 

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  • Zane's age

  • Zane is 22 years, 3 months, and 30 days old
  • Zora's age

  • Zora is 18 years, 4 months, and 3 days old
  • Random Quote

  • Lord, make me an instrument of your peace. Where there is hatred, let me sow love; Where there is injury, pardon; Where there is discord, union; Where there is doubt, faith; Where there is despair, hope; Where there is darkness, light; Where there is sadness, joy. — St. Francis of Assisi

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