29th October 2010

Quiet Days

Most weeks my mom comes up and takes Zora out for the day.  It is a win-win for the kids…Zora gets some much needed social interaction, Grandma gets to create a lot of memories, Zane gets some Grandma time (we usually meet up for a meal), and Zane gets some time where it is quiet in the house and the attention of both parents.  Without Zora in the house, it is a lot easier to play more complicated games, and that is often what Zane wants to do.

This week it was the Star Wars themed Stratego.

posted in Autistic Life, Board/Card Games, Zane | Comments Off

23rd October 2010

Not enough water!

We just had a massive meltdown over here. Took a while to figure out the problem…Zane was going around turning on each faucet, then screaming in despair: “not enough water”, then trying to access the basement where the hot water heater is. I realized the washer was filling up, causing the water pressure to be low. I waited for it to finish and then showed him the water was fine again. It took a while to explain to him why it was ok. He keeps me on my toes.

posted in Autistic Life, Zane | Comments Off

10th October 2010

Goats are Evil

Children’s story at church was about why Jesus talked about separating the sheep from the goats and what it meant. Asking the kids what the difference was, Zora piped up with some long rambly thing about “Sheeps being nice”…blah, blah, *needs to be cut off now* blah.  Zane, in a loud clear voice, states “Sheep are Good, Goats are Eeeeevil”. :bago: :roflrly: You could find me on the floor under my pew hiding.

posted in Autistic Life, Church, Giggle | Comments Off

9th October 2010

There are RULES mom.

Note to self: Do not give an Autistic child a cookie “for the road”, and then attempt to get him to pass by a sign that says “no food or beverages allowed” to pass through 10 feet of space to the parking lot.

We went to the “Artists on the path” event at the Great Plains Nature Center. At the end of it, in the main building, there were snacks for the kids to enjoy. It took longer than we were anticipating and I needed to get to rehearsal pretty fast, so I tried to get the kids to take their cookies and GO. No such luck. Zane saw the sign and would not walk through the door.

Reminds me of the time he was at one of those fast food playgrounds, playing happily, until he read the “Must have Socks to Play” signs. First, 80% of the kids weren’t wearing socks; Second, it was an unexpected stop and I had apparently ran through the stash of socks I keep in the car. He stopped playing and refused to play in the tubes the rest of the time we were there.

posted in Autism, Autistic Life, Language Development | Comments Off

7th October 2010

I want Eraserhead hair Dad.

Really?

10 minutes and lots of hair products later:  OK, here ya go…

10 minutes later:  I want normal hair again.  :laughn2:

edited to add: Eraserhead examples. But he has never seen the movie, so I have no idea where he got the concept from.

posted in Autistic Life, Giggle, Zane | Comments Off

15th September 2010

State Fair

My folks took our family to the fair this year.  As usual, it was a lot of fun.  The only unfun thing was dad having an injured eye.  He got a scratch on his cornea and it was ulcerating, causing him a lot of pain, and the drops he has to put in hourly were also painful.  It was in his “good” eye, which rendered him, effectively, blind.

They got ride-o-rama bracelets for the three kids the kids and Zach, so Zach could help, especially on the bigger rides Zane wanted to go on.

We have a photo of him looking forward and happy on this ride, but I was tickled by the picture of him smelling the ride before settling in.  One of those quirks inherited from both sides of the family.  (Even Zach’s dad, Zane’s grandpa, was known for smelling everything.  lol)

Before Zach & Zane split off to go on big rides, Zane rode a few of the kid ones with Zora.

One of the only rides that Zane has never really liked is the carousel.  When he does ride, he rides on the bench, but he prefers not to ride it.  I actually agree with him on this one.  I can ride the wildest roller coasters and other adrenaline rides, but the carousel gives me horrible vertigo and I hate it.  Zora and Zach both love the carousel.

Dad and I hung out with the kids and mom for a while, until the brightness and the dust was just more than he could take.  We found a spot just off the midway, in the shade and away from the people where we sat for most of the afternoon.  I realized later that the hours long conversation was the longest uninterrupted conversation I have had with my dad in decades.  We also laughed at the idea that he could never have guessed, when I was Zora’s age, that I would ever sit still for that long.

As darkness fell, we headed back to the cars, with one last stop:  the train.  Mom has taken this ride every year since she was a little girl, she always took us every year, and now my kids have gone every year.  However, I don’t remember being able to go in the “coal car” part of the train, so I am a little jealous.  We ended up going on the last loop of the night.  I think the kids behaved better than the “grown-ups” this time.

And, as we pass by a “photo board” thing, we decided to give it a shot.  I will leave out the nice photos because the bad ones were so much funnier.

Our family’s submission to “awkward family photos” website (a website of horrible family photos).  Zane was not really into the photo thing, as you can tell.

but we did get one last smile out of him before leaving.

posted in Autistic Life, State Fair, The 2 Opas (J's Parents), Zane, Zora | Comments Off

7th August 2010

First Movie Ever!

If you don’t count the Star Wars movie Zane slept through at 4 months old, this is the first movie for both of the kids.  They were both excited, and both of them behaved appropriately through the movie.  *whew*  With the Palace being $10 for the whole family to see a movie, I think this is something we can add to our rotation of  “things to do”.  Much to Zach’s chagrin, because he grew up getting all the popcorn, pop and candy he wanted at the theater, we decided to forgo the snacks so that we could do this more often.  Now we just have to wait around for appropriate movies to make it’s round to the cheap theaters.  Yay!

posted in Autistic Life, Movie, The Kids | Comments Off

6th August 2010

I met Temple Grandin!

She is my version of a rock star, and I can’t think of a rock star I would have been more excited about meeting.  Her books (and her mom’s book) have had a massive impact on my life, and on my parenting.  When I heard she was going to be in town for a conference I was giddy, until I saw the price of the conference.  Then my brother stepped up and offered to pay for a ticket for me.  :ldance:   (Thank you very much Steve).  I was THRILLED.

The night before the conference she had a book signing at Barnes and Noble, and I had to go to it.  Zach wanted to meet her too, so we brought the kids.  Zane was less than thrilled at the idea of going, and I after giving him a choice (either get out of the car, go into the bookstore and wait in line nicely, or no computer) I realized the irony of using a technique I had gotten directly from her books (except for Temple, her mom used TV) to get him to cooperate with meeting her.  To his credit, he did come with us and wait in the long line patiently.

Waiting in line was like a reunion of sorts.  I didn’t realize how many people in the local Autism community I knew until I was in the bookstore and knew, either by name or face, a good third of the people there.  lol.  Several of Zane’s former therapists, some of the students from the University Speech Therapy program, other families, media, and various other workers and advocates I have meet over the years were there.  Some of them I had known long enough that they were shocked at how much older the kids were.  lol.

We have been to book signings before and they usually have the authors near entrance.  I even commented to Zach that I wondered if they would have her up by the doors because it seemed like an overwhelming place for somebody with sensory issues.  I smiled when I got there and realized they had her way in the back corner, where it was much quieter and less busy, and had the lines weaving through the stacks so it both obstructed her view of the line, and muffled the noise quite a bit.  Such a simple, smart solution.

As we waited in line we debated which book to get to have her sign.  I finally settled on The Way I See It: A Personal Look at Autism and Asperger’s because I had checked the books from the library a ridiculous number of times at this point, and I had wanted to buy it for some time.  While waiting somebody came through the line with a stack of post it notes, asking how we wanted the book inscribed.  Another smart idea because it reduced the amount of interaction necessary for Temple.

As we finally rounded the last corner and I was faced with the big display of books, I decided to add  The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism for Zane, for when he gets older, but didn’t have time to get a little post it note for it.  I didn’t have time to dig out the post-it notes in my purse (yes, I am that dorky, I carry post-its with me all the time) before it was our turn.

When we went to her table, camera in hand, she was “in the zone”.  She said “hi” as we walked up, handing her the book, and much to my delighted surprise, Zane said “hi” right back.  I wanted to do a little dance when he did that…it is a rare thing, especially for somebody he doesn’t know.  As I handed her the second, book (without the note) I asked her to sign it to Zane, and she looked up, breaking out of her “zone”.  I put my hand on Zane’s head and said “This is Zane”, she looked at Zane, looked back at me, back at Zane, then immediately asked me “Are you going to the Autism Conference tomorrow?”.  (Apparently it was blindingly obvious that he is also Autistic…the book chosen was probably a big clue since it is for a pretty specific audience) I told her yes, I was very excited about it, and then told her that her books were a big help to me.  I was so excited that I forgot to take a picture.  Me.  Forgot to take a picture.  :roflrly:   There were even people standing right there, a good half dozen people that I knew by name, that I could have asked to take it for us, but I totally blanked out.   I was told by several people that they saw Zane on the news footage. I saw one channel that had his hair and chin looking at the books, but not anything other people would recognize, so it must have been on another channel.  I was standing next to a person who was interviewed for a while (my back to the camera, and I didn’t notice it until I was walking away), and I could hear myself in the background.  lol

The conference the next day was AWESOME!  It was so interesting to hear her speak and I learned so much.  It reconfirmed my commitment to make sure he has functional communication, but to put a higher priority on skill  development than trying to obtain a level of social communication that isn’t very realistic for him.  No amount of social skills training is going to make him a salesperson or customer service type person, but if he can develop a marketable skill, something that he can develop a portfolio for where the work speaks for itself, he has a shot in life.  She also talked about biomed and pharmacological interventions that have worked for her, and her evaluation process in deciding what is worth trying.  It was extremely useful because she was able to talk about some of the issues with a frankness that most people would find uncomfortable in front of an audience, but was exactly the kind of information you need when dealing with these issues.

She was also excited about the movie that came out about her and thrilled with Claire Dane’s portrayal, which made me want to rewatch the movie yet again (as if I don’t already have it memorized).  One of the things I liked about the film was the visual potrayal of her thought process.  It was how I imagined Zane thought, so I wondered how she felt about it.  I didn’t even have to ask because she was pleased enough to mention that exact thing during her lecture.

I also saw quite a few familiar faces, including another parent who’s son has been with my son for several years in social skills groups and therapies, so we have spent a lot of hours talking over the years.  She came with some other people and we ate together and she helped take a picture for me so that I finally had a picture of Temple Grandin.  The three of us were talking about our kids while taking the pictures (I took one for her too), so Temple isn’t thinking about posing, but somehow it was perfect anyway.  She is amazingly approachable and easy to talk to, with the added advantage of not having to do the elaborate social dance when you want to ask a question.  With her, you just ask.

As I was standing there talking, right after the picture, as Temple went around the corner to do a radio interview, I suddenly noticed the huge banner/poster thing that I was facing during this picture.  I had walked past it a dozen times but didn’t notice it.

Bigger than life size little Zane.

The irony being that neither Zane nor Elise (the OT behind him) is at Heartspring any more.

The rest of the conference was also really interesting.

The second speaker was Britt Collins, an OT, who was good, but didn’t really delve deeply enough for my tastes.  I did pick up a different use for a therapy ball that I will be using, and the overall lecture was good.  I think if I went to a conference where she had more lecture time it would be much better, largely because I am really familiar with sensory issues and didn’t need a review to get into it.

The last speaker was Diane Bahr, who talked about feeding issues and speech development.  This one made my brain really work.  It was fabulous, but I would have been lost if I wasn’t already very familiar with a lot of technical terminology.  As it was, I learned a lot.  There are a lot of things that I have done, as a parent, that I knew was important, but I never really knew why (beyond…”it is good for development”), and now I have a much deeper grasp of those things.  Everything from “tummy time” as an infant/toddler, to breastfeeding, to how/when to introduce foods and drinks to children and why those things have such an impact on development and speech.  Now I know why I was asked about all of those things and why I have been told that I did everything (well, I am sure not “everything”, but you know what I mean) right.  It was interesting to hear that there is a dramatic increase in ST/OT clients due to parenting practices (like leaving kids in the infant carrier/buckets, kids staying on baby/toddler foods too long) that is really affecting the occupation.  After going through what normal development entailed, on a very detailed level, she explained how to address serious eating/feeding/speech issues, at it was FASCINATING.  She focused on motor based speech delays and feeding issues, including drooling, biting and sensory/texture issues.  Definitely worth listening to.

After her lecture I stood around listening to other people’s questions (I do that at most lectures because I think I learn as much from specific questions as I do from lectures) and, after my question, she asked the group of parents that were left hanging around about the local services.  I mentioned that we currently got services through the university, but for opposite reasons…that my son’s speech delay was due to autism and apraxia (motor based) and my daughter’s delay was totally phonological, so the therapies are quite different.  She was thrilled to know that the university recognized the difference because a lot of places don’t, but it is critical to making progress to understand the reason for the delay.  (because some techniques cross over, but some are more targeted).  She asked about the specifics and it was gratifying to see her positive reaction.  I even had some other parents ask me about it later, as we were leaving.  That was sort of neat too.

It was an awesome experience.  A huge thank you to Steve who made it possible for me to go.

posted in Autism, Autistic Life, Books | Comments Off

1st August 2010

Oma & Opa’s Birthdays (and Anniversary)

My parent’s birthdays are one day apart and Zora wanted to have a party for them.   She carefully chose the candles and cake (she wanted white cake with cream cheese frosting in the middle and strawberry frosting on the outside.  I think what she *really* wanted was enough frosting that she could eat half of it and still have enough to decorate the cake.  :laughn1: )  When they came over she insisted on digging out all of the old birthday party left-over supplies for a more festive experience.  Steve & Nora were here too, but they might shoot me if I posted the pictures, since I kept catching them with full mouths and mid-expression.

Clearly, they are still in love.

He kept asking me: “Is the plate full or empty?”  and it sort of confused me.  He asked in between each bite.  After about the third time I finally figured out he was asking if it was ok if he didn’t eat it all.  (Do I have to make the plate empty?) As soon as I told him he didn’t have to finish it, he looked relieved and left the rest of the cake.  A kid that isn’t really into cake just baffles my brain.

posted in Autistic Life, Birthday, Extended Family, The 2 Opas (J's Parents), The Kids | 1 Comment

19th July 2010

Taste it

Like a lot of homeschool families, we don’t take off in the summer.  It allows us to take off more when the parks/museums/zoo ect aren’t as crowded when all of the other kids are in school.  Both of the kids have been on a “body” kick, and we seem to find a large amount of material that has continued to interest them, so we just keep going.

This book, From Head to Toe: The Amazing Human Body and How It Works, has been a fun resource this summer. It has good illustrations, fun text, and a bunch of easy to do experiments in it to help explain the content. We were sad to send it back to the library.

This is the experiment on taste, which involved simply putting different foods (salt, lemon juice, sugar, cocoa) in cups, then using cotton swabs to touch them to the tongue and describe the taste. After the initial experiment, they also experimented with mixing the tastes and trying that too. Simple, effective, fun.

posted in Autistic Life, Homeschool, The Kids | Comments Off

  • Zane's age

  • Zane is 22 years, 4 months, and 9 days old
  • Zora's age

  • Zora is 18 years, 4 months, and 13 days old
  • Random Quote

  • You know, I used to think it was awful that life was so unfair. Then I thought, wouldn’t it be much worse if life were fair, and all the terrible things that happen to us come because we actually deserve them? So, now I take great comfort in the general hostility and unfairness of the universe. — Marcus Cole, to Dr. Franklin on “Babylon 5: A Late Delivery from Avalon”

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