Taking the Scenic Route

Backyard BBQ with Friends

30th May 2008

Backyard BBQ with Friends

The boys played together and did a little better at including Zane in their games most of the time.  Here they discovered his “Cube World” toy and spent time watching them. 

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BTW…if you have problems getting your child to tell stories/narrations, this is a great toy.  Each cube has a little stick figure guy that does things.  It is simple, and without a distracting background, and we have had great success sitting with Zane having him describe what is going on, and starting to get him to predict what they might do.  He still has a hard time with word retreival, but this is the first thing where we have had some success in discussing/describing what is happening while it is happening.  Normally the suckers are expensive, but Amazon sometimes has them on some really kick butt sales.

 

The girls played together all evening.  By the time I thought to grab the camera, they had shed most of the dress up clothes (they were in hats and capes earlier), but I still caught some cuteness.

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posted in Friends, The Kids | Comments Off

20th April 2008

Birthday party and Church

The Party on Saturday 

Robert’s middle child turned 8.  The gaggle of boys were really loud and rowdy, and Zane came to the backyard to be with the girls instead.  They shared wagon rides and then helped Dori plant tomatoes and cucumbers, then water the garden.  I think they enjoyed the garden more than the rest of the party.

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Church today.

Finally, everybody was well enough to resume the Sunday School project for Zane.  I felt really good about it when we were done with the hour.  Every time I go to the Kid’s Ministry stuff I am left more and more impressed, and both kids seem to love it.  I couldn’t be more pleased with the whole program and the people I have met there.

However, the worship service was sooo bad.  The songs were annoying at best, weird melodies that I didn’t recognize and couldn’t figure out the alto/tenor parts to be able to sing (and the soprano lead was beyond squeaky for me) and just seemed uninspired.  The sermon taught me a lesson in patience and the ability to resist temptation.  (the temptation to chuck the hymnal at the preacher, a first for me).  I just spent most of the sermon wondering if the guy ever actually studied biblical history and understood what the original documents say instead of the outdate, narrow interpretations of them.  I am used to educated, intelligent ministers who, even if I don’t agree with them, at least are reasonably logical.  This guy was out to lunch.  I am not sure if I even want to go to another worship service there at this point. 

As much as I want to, I will probably keep going for a bit to see if this is a fluke, or if it is the norm.  I need to exercise patience and see if it improves.  We will be able to go to a different service or Sunday School after Zane is mainstreamed into the Sunday School program, so I need to just hold my horses right now.  I was hoping to be able to take Zane into the main service and get him accustomed to it, and this is the only reasonable option for that right now. (there is a service before his Sunday School, but I don’t want to wear him out in the big service before SS,  so I need to give him time to adjust to SS first, then we can go to the earlier service without it causing as much difficulty for him).

*sigh*  I wish I could combine the University or Chapel Hill service with the program at the MB church.  Right now, it is more important that the kid’s needs get met than ours though, so I will have to just suck it up and deal.  At least it does accomplish one thing very well…stimulates lots of discussion in the car afterwards.  lol

posted in Autistic Life, Birthday, Church, Friends, Garden | Comments Off

13th April 2008

Autism in the blogs

Sarah Ariella wrote a great post on IEP process and the problems faced when dealing with the education of her son.  I could identify with a LOT of it.  I think the biggest, most discouraging, thing I could identify with is the overall attitude of unwillingness to see the gifts and strengths, nor the desire to put in the effort to really push ds.  I don’t think it is everybody, and I don’t think it is limited to just SN kids, but it was there.  I knew what it felt like to have people push him and recognize who he is because I was getting that at WSU and Heartsprings.  It is intangible, but probably the single most important thing for any child in their education. 


Fee has a neat post about Bedeism, and instead of leaving a blog in her comments, I thought I would share some Zaneisms, also computer related.  (no surprise, since both Bede and Zane are accomplished on the computer) 

“Next Level” - means he wants to do something again, usually also means he wants to modify it some way or make it more challenging.
“2 Player!” (or 3 player, 4 player, ect) – means he wants you to play a game with him
“click on it” – means “look at that” or to press some button
In a funny coincidence (probably heavily influenced by parents who buy candy on clearance sales) the day she posted about Bede wanting a “J” candy cane, Zane was bugging us all day for “stick candy”, which we finally determined was the stick candy canes we have up in the shelves.

eta:

“Oops!  Try Again!” is said with the same intonation by both boys…we figured out it comes from an educational internet site they both like (when I think of the name of the site, I will add it, but I am having a brain fart right now)

Examples of Functional Echolalia. 


KAKE, the local ABC affiliate, did finally post his video in their video links.  (on the right side of the page, but will probably have to scroll to see it if you don’t see it right away.

posted in Autism, Autistic Life, Clicky, Echolalia, Friends, In the News, Language Development | 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 February 2008

Autism, saw a lecture on enzymes

Last night I went to a lecture at one of the local Health Food Stores, where they had Karen L. Defelice, the author of Enzymes for Autism, there.  She had written an updated version and was doing a book tour.  It was really great. 

I had the older book on my shelves, and had skimmed through it, and it was something we were considering doing, but I didn’t really understand it well enough to feel comfortable doing it.  Listening to her lecture, all of this old information I learned in my college A&P class flooded back into my brain, and it clicked for me.  I can’t believe I was struggling with it before. 

We were going to start trying to implement a GFCF diet for him soon, although we weren’t sure how we were going to be able to afford it because we were going to have to put the whole family on it.  To add to this, I generally am not very comfortable with removing entire food groups, even in healthy adults.  Plus, he is a kid that really would starve rather than eat something he doesn’t want.  He is already pretty thin, and I was genuinely concerned about ending up with a g-tube before it was all over just to get some nutrition in him.  All the research I have done with GFCF says that you usually also need to eliminate Soy, and often Corn, and there is often a rise in other food intolerances, and that is a HUGE concern when I have a family history full of allergies.   Oh, and the local Developmental Ped doesn’t really support diet changes and he would need to be under medical supervision to do it because he is so skinny already.

So, a diet like this involves things like having to make Almond / Rice / nut milk yogurt for him from scratch to replace the yogurt he eats (one of his few foods), and trying to find bread he will eat using obscure flours (some of which I can grind in my Vitamix) and trying to get the science of bread making down while using alternative, well, everything.  I can’t afford to buy the loaves from the grocery store.  (that alone would almost be our entire food budget, so home made was the only way to go for us).  It is an expensive PITA, but we were gearing up to try it.

Anyway, I digress.  Back to the subject at hand.  The enzymes, although they can be used with the diet, are usually successful without the diet, and those that are on the diet can often return to eating “regular food” again after using the enzyme regimen.  The big plus, as opposed to the diet, is that we will know in a much shorter amount of time whether it is worth pursuing.  In a month, at the most, if there isn’t any improvement (that can be dismissed simply by maturity), then it can be dropped.  The diet takes a lot longer to see results.

Also, if it is working, we can then add in enzyme therapies (along with some allopathic/Western medicines) to see if there is a yeast, viral, and/or a bacterial overgrowth, all somewhat common in autistic kiddos. 

I really don’t expect any dramatic things, but want to make sure that if he is in pain from gut issues, that he feels better.  There are a lot of gut issues in my family especially, and there are some related things in Zach’s family (things like migraine headaches, IBS, arthritis are related heavily to gut issues and can be addressed with enzymes, and although my family tends to have it all, Zach’s family does have some here and there too)  I know how much pain my mom was in for much of her life with gut issues, and if I can prevent that for my kids, I will do whatever I can.  I am thinking of trying it myself, actually, because there are a lot of things on “my list of complaints” that look like could be helped.  First Zane though…we are really going to be struggling to afford his, and anything else is can be explored later. 

I won’t deny that I have a spark of hope that it will produce more dramatic results, but I just don’t want to focus on that.  I want to focus on him feeling better, because that is what is most important.  At any rate, we went back to the HFS and bought 2 bottles of enzymes, the first step in the process, and started giving them to him today.  There is zero reaction so far, either negative or positive.

On a different note, the meeting itself was interesting.  I didn’t realize just how many people I knew until I got there and knew about 10 people there by name, and recognized some others.  I sat next to Carrie, Zane’s first ST (who’s wedding we went to), ran into the Grandma of the girl Zane has been doing friendship group with, and saw quite a few people from the support group. They also gave out the book to everybody attending, so I didn’t even have to buy the new book.  We also learned that the person who wrote the book does all of the touring on her own dime, and refuses to take freebies from the products she mentions in the book because she wants to remain objective.  As she put it, “I have a job, this is what I do to help others, I don’t want to get paid for this.” and “the only reason I can do this is because my boys (now teens) don’t have to be scraped off walls”, although she is not sure she enjoys teaching them to drive.  lol.

posted in Autistic Life, Biomed, Friends | 3 Comments

21st January 2008

Gleeson Addition!

 

They welcomed little Gloria today to the Gleeson clan.  One lucky baby, with lots of great brother’s and sisters.

 

posted in Birthday, Friends | 1 Comment

22nd December 2007

Updates: ST semester ends, Friend’s Birthday Party, Cookies with Grandma

Play time!

His last day of the semester at the university speech therapy.  If I am able to I want to upload a video of this because you have to hear it to understand how crazy this picture actually is.  They are trying to get the kids to play “Go Fish” with no visual supports.  It is a study in echolalia with rather dizzying results.  (sort of a “Who’s on First” experience)  She is a bit older than Zane, but they are at a similar level.  She is very chatty though where Zane is pretty quiet.

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Party Time!

At one of Zane’s friend’s birthday party last week.  It was at a place called “Pump it Up” and had these huge inflatable play structures.  Zora has no fear and was trying to climb the ladder to the really big slide by herself and didn’t want to wait to get settled to go down.  Zane took a bit longer to warm up to the big slide, but at the end, he didn’t want to stop.  lol.

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Grandma Time!

This week Grandma came up with lots of goodies to play with:  paint, stickers, markers, giant pieces of paper and little notebooks.  (oh, and food…spaghetti, always a hit).  For the first time, Zora wasn’t the least bit hesitant for Mom and Dad to leave.  She was yelling bye-bye at us when we picked up the keys and seemed delighted that she was going to get some Grandma time.  Zane, as usual, was quite happy too. 

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After they played with that, they decorated Christmas cookies with candy.  Zane ate most of them right after he decorated them, but at least he ate the whole cookie.  Zora kept licking the toppings off and leaving the cookie. 

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The both sacked out shortly after Grandma left.  She wore them out.

 

posted in Autistic Life, Birthday, Christmas, Echolalia, Food, Friends, ST, The 2 Opas (J's Parents), Zane, Zora | 1 Comment

12th December 2007

Hindsight is an interesting thing

Ran across these when looking for an old photo.

Little did we realize how much these two would have in common.

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(Zane and Bede for those who don’t know)

 

posted in Autistic Life, Friends, Zane | 3 Comments

9th December 2007

Carrie’s Wedding, beautiful!

Weddings and things like it are really tough for Zane.  This one was the exception, and a lot of fun.  The current ST made a social story for him and he knew what to expect as far as how the evening flowed.  Plus, it was Carrie.  He loves Carrie.  As it turns out, we ended up sitting next to Elise, his OT (who he also loves), and the other people at the table were other people from his therapy place, so it was a lot more relaxing for us.  They notice the things he is doing well, how well he is handling the overwhelming environment instead of the looks you get because he isn’t a Stepford child.

The pictures aren’t the greatest because it is a tough environment for him, but he really did have a great time.  He danced the way only a kid can dance, free and joyful and happy.  It was wonderful.  Zora was also a bit overwhelmed and vacilated between excited, clapping, and clingy.  I actually think this time around, she had a harder time then he did with the chaos.

Eating Cake

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With Elise

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With the Beautiful Bride

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Joined the group of kids dancing in “ring around the rosie” fashion.

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Dancing

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Wanting to be in the action, but needing a security finger.  lol.

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Dancing with Elise

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A video of Zane and Carrie

 

 

A video of Zach & Zora dancing

 

 

posted in Autistic Life, Friends, OT/Sensory, ST, Wedding | 2 Comments

27th November 2007

Backyard ball, swimming lessons

Playing ball with Alex.  (Robert’s oldest)  Robert & his boys spent the night this weekend and Zane had fun playing video games, playing on the computer, and playing outside.

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Zane’s Swimming Lessons.  He is a class with typically developing 3-5 year olds at the YMCA.  They bring in an extra lifeguard to make sure he is safe.  The teacher and the lifeguard are both really great with him.  The first day he flapped so much he looked like he was going to fly away.  He was so excited!  This is his 3rd lesson, and the first time I went with him.   He totally LOVES swimming, no surprise considering how much he loves water.  (photos and videos are all taken at the maximum zoom of our camera through a water spotted window)

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And a video of Zane

posted in Autistic Life, Friends, Swim, YMCA | 3 Comments

  • Zane's age

  • Zane is 22 years, 11 months, and 26 days old
  • Zora's age

  • Zora is 18 years, 11 months, and 30 days old
  • Random Quote

  • Call them rules or call them limits, good ones, I believe, have this in common: They serve reasonable purposes; they are practical and within a child’s capability; they are consistent; and they are an expression of loving concern. — Fred Rogers

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