Taking the Scenic Route

CNN iReport: Living with Autism

31st March 2008

CNN iReport: Living with Autism

A friend of mine just emailed me to let me know that Zane’s story is on CNN’s iReport: Living with autism– your stories  _faint

http://www.cnn.com/SPECIALS/2008/news/autism/

We are also supposed to be interviewed tomorrow by the local news people and I am so nervous. I can’t figure out what to wear and I have a unicorn horn zit in the middle of my forhead right now.

posted in Autism, Autistic Life, In the News | 5 Comments

31st March 2008

ST, Interviews, Playdate, Church and a few photos

This week it finally started really clicking with his ST student.  I am quite happy about that. 

I am going to try and get another session of ST instead of OT at Heartsprings.  Evidently, they made an offer to somebody, but last I heard there is no definite replacement for Elise yet, and I would really rather follow Elise since she and Zane have such a good relationship.  Plus, when we changed STs, he lost one session a week, so he only has one half hour a week there.  I really want more for him.  She is very good and I think they would go a lot further with another session.

I was asked if I would come in to be interviewed about the Autism Walk.  We will film the interview on Tuesday and it will air the following Monday, in conjunction with Autism Awareness month and the Autism Walk.

We went on a playdate with the gal from the MB church this week.  She has 4 kids (and is expecting again in Oct), and the twins (#2 & #3) have autism.  The oldest is Zane’s age, the twins a year younger, and the youngest is about 6months younger than Zora.  I saw them at church this morning too.

I really, really, REALLY like the Autism coordinator person at the church.  She drives all the way from Mac right now to help set the program up.  She is such a valuable resource and I was really impressed with her.  She was able to pick up a lot of who Zane is even without me saying it.  The program requires a lot of parental involvement at first as they get to know him, but I like the approach a lot because they are obviously wanting to work with the kids and not the label.  This week she did a lesson with him, to start getting to know him.  Next week I prepare and teach a lesson to him so she (and maybe one or more of the potential “buddies” can observe how I work with him to learn how to interact/focus him) and the following week I will prepare a lesson and teach the first half of it, and they will teach the second half.    It was also really a shift for me to hear an autism expert talk freely about the spiritual aspects of autism & special needs kids.   You can see in her eyes that she doesn’t come from a place of pity, she genuinely loves these kids and values them from deep inside.  It isn’t just lip service.  Everything from the language she uses to her nonverbal communication confirms that she is in this for all the right reasons, and I really feel blessed to have found this opportunity.

On a funny note, when our friend went with us to pick Zora (and her youngest) from the nursery, another couple came up behind us.  She went to introduce us, and as I turned around and saw his face, I was a little shocked.  As she said “This is…” I filled in the blank.  It was one of my high school classmates.  Now keep in mind there are only about 30 of us in my class (small school) and you understand my surprise.  He said that another guy from our school (one of my brother’s best friends way back when…that was a class of 20-25..so even more of an interesting coincidence) was a member too, and had actually just walked by.  (I missed it, obviously).  The pastor in the church used to be in the MB church about 6 miles from my home, in the neighboring town, and knew my mom’s parents.  I am quite sure there are quite a few people there I am going to know somehow, even though it is an MB church.  lol. 

A few quick photos

Zora in her new outfit from Gramma Z.  I LOVE it, and the shoes will also be great with her Easter dress she will be wearing this summer.  (we had her in the winter dress today because it was drizzly and cool, and they looked great with that too)

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My Zanester

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And the family’s view of dh this week as he spends every waking hour on his thesis.

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posted in Autistic Life, Church, In the News, ST | 4 Comments

30th March 2008

Our very own Energizer Bunny

Little Zora is a dyanamo.  After 3 hours in the church nursery, she came home and didn’t want to take a nap.  We went to a birthday party at Pump-it-Up, one of those places that has huge blow up play equiptment.  (here are some pics from a b-day party there last Dec: 1, 2).  Both of the kids really had fun, but Zora’s energy was remarkable, epecially considering no nap after what usually wears her out.  Zach was going up with her each time for a while, and was tiring, and one time two little kids got in between him and Zora and she went down on her own, in perfect form, so from that point on we just let her go.  For two full hours, she climbed the stairs, on her own (nobody carrying her), and then slid down the slide on her own.  A lot of the times she was dragging the yellow matt, bigger than she was and easily 10-15lbs up the stairs with her.  She barely even slowed down.  I just couldn’t believe she kept going because the stairs are much harder than average to climb because it is inflatable, and any other person on the entire thing would cause them to wiggle and require more work to keep balanced.  She attacked that thing with abandon.  No wonder we have a hard time meeting her energy needs at home.  lol

posted in Birthday, Friends, The Kids | 1 Comment

29th March 2008

Documentary about the Autistic Exerience

This is a really good documentary from HBO about a group of families that are involved in making a musical about Autism.  All of the actors are autistic.  http://www.hbo.com/docs/programs/autism/video/

posted in Autism, Clicky | 1 Comment

24th March 2008

Easter Day and a miracle just for us.

Although the day started ENTIRELY too early,  (the kids were up before 5am…ugh) the day was really good.  We went out to my home church for the service.  It was a fun, interactive service and the kids both did well enough that we were able to stay in the pews (about 5 rows back) the whole time (until the little ones were dismissed for the sermon after the children’s story).  My dad did tech for the service (pretty normal) and my mom was in the praise choir, so she was up and down a lot as they performed. 

One rather amusing hitch was when the pastor called for the children’s story.  What he meant was children’s choir.  (the children’s story was to follow the choir) but he said “story”, so I picked up Zora to take her to the front, and sent Zane on ahead.  About the time Zane clears the pew and is headed up front, I catch the eye of my mom (standing with the praise choir up front) who is motioning me to sit down.  I was sort of confused, but went back to my spot assuming that maybe the story was too “old” for Zora.  (which was not the normal routine for children’s story, but oh well).  A moment later I realized that it wasn’t children’s story, but choir, and Zane got shuffled in with the other kids standing in the front of the church, front and center.  Zach and I both had the realization of what was happening at the same moment, but were in the middle of the pew and just sort of looked at eachother in shock and “what the heck do we do now?” look on our faces.  As my mouth stood open, in a semi panic, the choir began to sing.  Zane, instead of freaking out or melting down, started smiling the biggest smile and looking around at the kids surrounding him.  By the third verse he was (sorta) singing along.  Amazing.  Our own little Easter miracle.

We went to the farm for Easter dinner.  Grandma (mom’s mom) and Steve and Joy joined us.  It was a fun afternoon.  The kids got another basket filled with goodies from Grandma & Grandpa, and played on the farm until they were so worn out they fell asleep in their tracks.  At that point, we scooped them up and took them home.  A very nice day.

The photos and 3 videos

  (I didn’t start taking pictures until after changing them out of their Easter clothes, so I will need to dress them up again to get some pictures of their Easter cuteness)

As the grownups finish eating, the kids find their way to the piano.  (next to the dining table)

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And a video of them playing: 

 

 

The highlight of the day for Zane…Grandpa showing him how to work the backhoe.

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A video of him taking the controls: 

 

 

Zora spending time with Grandma while Grandpa and Zane are going for a walk.

The cat (Barnum, our old cat) was curled up in the planter and Zora kept bringing things to her.  (the white planter was the only thing there before Zora started moving things)

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A video of Zora discovering the eggs have treats in them: 

 

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Grandpa & Zane return, Zora shoots out to meet them.

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Zora snags Zane’s basket when he sets it down.

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Zora shows me that she can drive too.  (the truck was not running, btw)

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The kids help Grandma put birdseed into the feeders.

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Hope your Easter was as joyful as ours!

 

posted in At the Farm, Autistic Life, Church, Easter, Extended Family, Music, The Kids | Comments Off

24th March 2008

Easter Eggs!

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posted in Crafts, Easter, The Kids | 1 Comment

21st March 2008

Autism meetup, maybe a new church for us

Zora is still clingy, but not sick any more.  Zane seems to be better too.  Hopefully everybody will stay healthy so we can enjoy Easter this year.  We plan to go out to the farm, probably to church too.  Zane and Zach might spend most of that time out on the playstructure outside, but we will give it a shot.  Then to Mom & Dad’s for dinner and an afternoon of hunting for eggs and playing on the farm.  My grandma is planning on being out there too, which just makes me even more excited to go out there.  Not sure if Joy and Steve will be there though…they might be going to her family.  (I think they celebrate Easter, and if so, it is the only holiday they celebrate.  They are some variation of Christian, but they don’t celebrate a lot of the holidays)

Tonight I went to the Autism parents meet up and got into a conversation with somebody I have talked to online sometimes.  She has invited us to meet up with them on playdates before, but we haven’t been able to go.  We set a date for this Tues to get together. (she insisted we set a date and I was glad because I am having a tough time with depression and would have probably kept putting it off)  It was one of those weird moments when I felt like God knocked me on the back of the head saying “LISTEN ALREADY, WILL YA?” when I was talking to her.  She goes to the Mennonite Brethren Church on the west side, which I think I heard her say at one point at an earlier get together, but it didn’t really sink in because our car wasn’t going to make it to the other side of town reliably, so I wasn’t even going to the “regular GC” Mennonite Church that I kind of liked.  Going to the MB church didn’t really hit my radar, which is really stupid when you realize I am going to a Methodist Church now.  lol.

Anyway, she has an NT son Zane’s age, and autistic twins a year younger.  (and a toddler younger than Zora).  I would guess her to be around my age basically.  She also homeschools.  Now, we have been together on several occasions, so why I didn’t really let all this sink in before is beyond me. 

There is a person at her church that recently returned to this area and is teaching her autistic boys in Sunday School class.  She has been doing research and working on educational strategies for autistic kids for 20ish years and is back in this area to teach at 5 of the KCAC colleges (the league of private Christian Colleges, my alma mater being one of them) to teach the upcoming generation how to educate kids with autism.  She has been talking about developing a curriculum for homeschooling autistic kids too.  Since my son is about the same age, the mom friend thinks it would be no problem at all for my son to join hers in the Sunday School class.  So, a small class size with a teacher that is invested heavily in teaching autistic kids in a Mennonite (ok, MB, but who’s counting here  :P ) church, with other kids that are homeschooled.  Yeah….don’t ya hate the feeling that God has been trying to get through to you for months and you haven’t been listening.  lol.  *sigh*

So, we will give it a try.  I still like the Methodist church, and so far, the situation for Zane is a lot better than anything else we have run across, but the class sizes are still huge and I am not sure how much he is really getting from it.  It is sure a lot closer than the MB church, but our car can handle it now, and even though it is MB, it is probably a closer fit to our belief system.  (although the Methodist church really isn’t too far off).  It is worth giving it a shot.  After Easter, of course.  We are going to my home church on Easter I think.  The Methodist church doesn’t have Sunday School or Children’s Church that day, just 3 worship services and there is NO WAY I will walk into a new church on Easter.  Unlike most families, Easter and Christmas are the days I am least likely to go to church because it is so much more crowded, off routine, and more difficult for Zane.  At least at my parent’s church there is a quiet outside (rural church), with a play structure that he can go to if it is too energetic inside.  That, and people there know us, and know him, and therefore aren’t shooting us disapproving looks.

posted in Autistic Life, Church | 1 Comment

18th March 2008

link

A kick butt link I wanted to keep track of: 
http://www.danasview.net/index.htm

posted in Autistic Life | Comments Off

17th March 2008

*grumble grumble*

Zora is sick and cranky and hanging on me.  It is day 2 of this and I am ready for the crankyness to END.

Zane has no therapy this week until Thursday evening.  The university is on spring break, so there goes 2 speech therapies and Reading Explorers.  Our OT is leaving heartsprings and I was suprised to learn it was our last session with her last week, and no replacement as of yet.  (although we will see if insurance will pay for us to follow her to her private practice, even though it will be a bit of a drive), and the hippotherapy for today was cancelled last night for a mix of reasons (the main person either got fired or quit, one of the horses is lame, and I think our OT called in to cancel….and it rained today, so it would have been canceled anyway).  So, it will be a long week for us.

I am starting to feel cranky too.  *pout*  With Zora not feeling well, it means we are not really able to go out as much either.

posted in Health, OT/Sensory, ST, Stress | 1 Comment

17th March 2008

Enzyme roller coaster

Trying the enzyme regimen has brought up a whole host of old feelings that I thought were neatly put away.  “Old timers” on this journey will tell you that there are ups and downs, but somehow, I thought I had dealt with it and moved quite peacefully into “acceptance”.  I was naive.

I honestly started the enzyme therapy simply to make sure he wasn’t in pain.  As much as I told myself that, I keep finding myself looking for a sign that there is some dramatic breakthrough.  And as soon as I start getting excited at some small thing, or deeply disappointed in another small thing, I feel the most incredible guilt.  Overwhelming guilt because I feel like a hypocrite, because I am hoping for a positive change in his symptoms.  I can’t find a way to reconcile my feelings quite yet. 

I think watching him deal with some of the side effects is making it even harder.  He is making some improvements in language, ect, but he uses some of that to tell me he has a stomach ache and feels yucky.  Healing isn’t comfortable, I know.  I went through a lot of surgeries and drug treatments over the years to deal with endometriosis, and my mom had to stand by and watch me going through it.  I think it is harder to watch than to be the one going through it though, having been on both sides now.  I hate this and am excited about it at the same time. 

posted in Autistic Life, Biomed, Stress, Zane | 1 Comment

  • Zane's age

  • Zane is 15 years, 5 months, and 27 days old
  • Zora's age

  • Zora is 11 years and 6 months old
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  • Everybody longs to be loved. And the greatest thing we can do is let somebody know that they are loved and capable of loving. — Fred Rogers

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