Taking the Scenic Route

Friday September 28, 2007

28th September 2007

Friday September 28, 2007

Really glad we didn’t call the kids over to look at it when we discovered what it was since they both tend to grab things.  Yikes!  It even pooped out a little sack of orange-red warning scent.  Very interesting.

click to see larger picture

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26th September 2007

Wednesday September 26, 2007

Our lives are on the way back to a nice normal sort of existence.  I am really appreciating it.  It isn’t perfect, the house is slowly getting cleaner, but it isn’t there yet, money is still tight, but I feel like we are winding down from crises mode that has hung over us for the last month or more.  It is nice.

Yesterday Zane suddenly was interested in learning again.  He was excited to work on the phonics program (picked an online one that really seems to suit him), wanted to work on his book he got at speech therapy (they make a workbook type thing that resembles a book and has elements of the story cut out for him to sequence and glue into the book, and then do some writing.), then we did playdo where I was able to work in both working on some fine motor skills (rolling balls with hands, then fingers) and then we made ropes that we wrote out the word sounds he studied in the phonics lesson.  I left a few workbook/activity books on the table, and later in the evening he wanted to do a few pages of mazes, then some math.  He was more interested in working on math than playing something else.  lol. 

Today has been similar.  The morning started with letting me sleep in (yeah!) while Zach took the kids to Krispy Kreme to watch them make donuts for a while and then pick out some treats.  Zane, for the first time, requested white milk instead of chocolate milk to go with his chocolate iced glazed donut with rainbow sprinkles.    (he picked the “rainbow sprinkles” donut.  good choice!)

When they got home, he played some educational games this morning, and we spent the afternoon out.  Had a dr. appointment and were prescribed some different allergy meds.  (Seradex…couldn’t find any info on it in a quick google search, so that is on the list before we give it to him), then we went on campus to retrieve the paycheck stubs, fax out some forms for hippotherapy, photocopy the paycheck stubs and tax forms to include with the YMCA financial aid.  Then we went by the Y and then his therapy place to drop off the financial aid forms.  This evening he played with playdo again, and he and Zach played some more educational stuff together on the computer. 

Wonderfully calm and nice.  Tomorrow there is a playgroup, and the a hearing screen (he doesn’t need one, but his speech therapy student teacher needs to do one and asked if he could be her victim, figured the practice would be good for him), then speech therapy and OT.  Another full, but good day I suspect.

 

from yesterday

Zora really started coloring for the first time this week.  (as opposed to just stabbing the writing implements into surfaces)  This is the first time I set paper in front of her.

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She discovered that coloring her hands, and then wiping them clean was fun too.

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caught him mid sniff, hence the weird facial expression

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From this morning

He finally isn’t drowning in size 6 clothing, so I think we can finally start moving up a size after 3 years in size 4 to 5

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22nd September 2007

Saturday September 22, 2007

Yes, I watched it.  I was rolling my eyes within minutes, but I watched the whole thing.

There were good things about it.  I appreciated what she said about babysitting being such a good help, and how people around you don’t know how to react (they don’t rally around like they do with other diagnosis, largely because nobody understands what it is).  I could identify with how hard it is in the beginning, how overwhelming, and how different the journey is than the one you thought you were getting into.  Also good:  that we should take another look at the vaccine schedule, and that one size doesn’t fit all.  I also agreed that doctors need to listen to mothers more, rather than dismissing our instincts.  We are the experts on our children.  No amount of med school can change that.

I was not thrilled with several aspects.  First, it’s Jenny McCarthy.  She isn’t exactly the most credible “autism expert” out there.  How much do I really want to listen to somebody so dumb they cut their hair in a style that has to be pushed out of their face twice a sentence.  (made my face itch watching her).    Second, she offered very little by way of evidence. There was only a short video of “after”, with no “before”.  You just have to take her word for it that he is “healed”, even though he still has traits that come up now and again, so they have to keep squashing that down.  ( a cringe worthy statement ).

The main problem I had was the big picture.  I find it increasingly difficult to listen the the culture of “cure”.  I find it distasteful when she describes her son as “trapped” and putting herself in the role of martyr heroine that is going to “free him, brick by brick”.  It seemed really self-serving.  It also furthers the culture of “cure at all costs” and leaves people venerable to feeling guilty if they don’t have the same “success” and accusations of not doing enough.  It sets up a culture that makes people start blaming the parents if their child is not transformed to typical.  There is a big disparity in outcomes of seemingly similar kids, that is independent of treatments.  Some kids respond well, some don’t.  Since the only real treatment available tends to be more successful the younger you start, there are a lot of kids out there with “autism” labels much younger so they can access treatment.  Some of these kids will end up with a higher functioning level just because that is their development curve and because the labels were attached much younger than they would have been even 10 years ago. 

I think seeing people who have practically limitless resources spouting such a guilt inducing treatment plan is almost cruel.  Most of us can’t afford the level of treatments her son had, and yet we are held to the same standard, or worse, accused of being selfish or that we never should have had kids because “we can’t afford them”.  Who the heck expects to spend $70K/year in therapy (conservative estimate…we are at about that much a year with only about 3 hrs a week…but much of it is paid by financial aid) in addition to the normal cost of raising a child.  Who expects to spend several thousand a month so they can follow the diet, and take the supplements.  That is more than double of what we make in a year. 

I wasn’t sure how to respond to Holly’s statement on changing the vernacular from “autistic person” to “person with autism”.  It makes me really uncomfortable to say “person with autism” when many of the people actually affected by this difference prefer to be called “autistics”.  I still struggle figuring out how to handle the semantics of how to talk about this, which is sort of ironic in and of itself.

I guess, all in all, I don’t understand what people are trying to “recover” from.  It would be like asking me to “recover” from blue eyes, or a preference for Birkis, or being a natural night owl.  All of these are inborn, or stem from the personality I was born with.  They aren’t separate from me.  You can put me in high heels, but it isn’t going to make me comfortable wearing them, but I can do it if I have to if that is what it takes to gain your approval.  Hmmm….maybe I can recover from “birki-ness”. 

 

***edited to add one more thought***

What really dissapoints me the most is that we keep seeing only the extremes of autism in the media.  I guess it is to be expected simply because it is a more interesting story, but it isn’t the reality of most families affected.  Most of us deal with someplace in between.  I would like to hear more about the austistic spectrum.  About the variences.  I know when I saw Autism Every Day, it did not help.  One one level, it totally freaked me out, and on another, It created a plausible deniablity because I didn’t relate to a lot of it.  Zane’s issues are not that extreme.  If anything, it further delayed my acceptance, and his diagnosis, because it gave me a reason to doubt what I was hearing.  Compared to those kids, Zane just seemed quirky.  On the other end, he doesn’t really look like the “recovered” kids either.  The majority of cases are in the middle someplace, and even if you have extreme moments (which we do), most of life is not like that.  There is a normalcy to it.  Why do they not show that?  I think it would go a lot further to help with awareness and acceptance if people realized that it isn’t scary.  I know I am a thousand percent more comfortable with the more severe end of the spectrum now that I am used to the middle of it.  I suspect that I am not alone in that.  If you can find a way to relate, it only expands your ability to relate to more.  ***end of edit***

 

On a similar note (and part of why it took me a while to respond)…

We had our appointment with the Developmental Pediatrician on Friday.  She is the only one in the State of Kansas, except for KC area, which is served by the Children’s Hospital in MO.  We talked to her about the gluten/casein diet.  Zane had been tested for food allergies and Celiacs and some other things along those lines (all of which showed he didn’t have those issues) and that, combined with the cost, combined with the fact he would need to be under strict medical care because he is already on the skinny side, left us struggling with whether or not we should attempt the diet.  We really, really can’t afford it.  My instincts aren’t screaming at me that we need this and it would devastate our finances.  But, we needed to at least explore the option.  She said that she had several patients who had done it, with no ill effect.  However, none of the gains were miraculous, and there is no way to know if the gains would have been made without the diet.  We had seen some of the exact same type of gains over the last year and did not have the diet.  Some gains are just due to maturity, and they look like miracles to us in the thick of it (I didn’t think he would EVER sleep more than 3-4 hours straight…that, in and of it self probably has made the biggest impact on our lives).  Basically, we left feeling like it wasn’t worth us wracking ourselves with guilt.

There was also a looooong discussion about homeschooling.  Unlike regular peds, whom I think have no business nosing around in our parenting, a developmental ped needs all aspects of her patient’s lives to really get a good feel on what is going on with them.  (especially when they aren’t able to speak for themselves).  So, I expected to be questioned on this issue, and I was not disappointed.  In the end, she agreed with us.  Zane is a really unusual case, and the mixture of his autistic traits mixed with the high intelligence (he tested much higher than others were expecting him to), there isn’t a great placement for him…there would only be ‘the best we can do’.  Because of the resources dh and I have, we create a better placement for him at home than the public school can right now.  This was a very, very big deal.  In the state of Kansas, attendance isn’t compulsory until 7 years old, UNLESS there is a handicap.  That is part of why I wanted to stop the IEP before an official recommendation was made, because if we said no, there was always a possibility, however slight, that when we said no, they could come after us for educational neglect.  It wasn’t likely, but it was possible. 

 

And finally, some readings that have sat here, waiting for another “autism entry”.  lol.

Autism’s parent trap: When false hope can be fatal

Why I dislike “person first” language

Toward a Behavior of Reciprocity a journal article on how the behaviors of the people interacting with the autistic person makes a big difference in how well the autistic person is able to communicate.

 

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22nd September 2007

Saturday September 22, 2007

No matter how closely you watch them, they still grow too fast.

April 4, 2007

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Tonight

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22nd September 2007

Saturday September 22, 2007

Tonight, when we saw Zane’s drawings on the patio, at first we were a bit alarmed.

He drew a person with a sad face. 

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As we looked around, we saw that he also drew somebody with a happy face.

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And then we got looking at them and realized the happy guy had a bunch of hats on his head, and we were reminded of the “Caps for Sale” book that he enjoys. 

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Which took us back to the other drawing, where we realized that he had drawn a bunch of hats on the ground, off of his head.  Ah-hah!  We asked Zane about the drawing.  The guy was unhappy because he didn’t have his caps on.  When we complimented him on doing such a good job of drawing the “caps for sale” story, he grinned ear to ear, ran inside, and retrieved one of his old caps that resembled the one the peddler wore in the story and ran around the back yard.

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Love it!

 

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19th September 2007

School is officially over.

Went to the school and delivered a letter and the library book.  Then to the library to get Zane his first library card and get lost in the stacks.  (the city library is so nice after seeing the sparse school library).  Then to Speech therapy.  He is finally starting to show her all the improvements he made instead being so wiped out he can’t learn.  It is great.

We don’t have the curriculm yet, but we have a stack of books and other things to enjoy in the meantime.  Although I am not feeling too organized right now, my family seems pretty happy.  Loving it.

 

Right back at ya darlin’

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Zane drew a big city with a castle.  Even has a dragon and knight.  It is so cool to finally hear some tell us what he is drawing.  In the picture, he is working on making a maze.

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a close up of the blue dragon and knight in the pink kingdom.

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And people call this a weed.  Bah.

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And one by my mom of the Monarch migration.  She has trees just packed with Monarchs.  Just stunning!

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ps…I will write a bit later on the recent Oprah episode on autism (with Jenny McCarthy)

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18th September 2007

Tuesday September 18, 2007

We met my folks at Sams for shopping, then back to our place to throw some burgers on the grill and hang out for a while.  After eating, we hung out and watched the kids sing and dance to MP3s of kid’s songs.  It was relaxed and delightful. 

Here are some pictures as they are getting ready to leave.

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16th September 2007

Sunday September 16, 2007

Here are a few of my kids playing in the backyard of the birthday girl.  (Robert’s kids aren’t pictured right now)

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14th September 2007

Friday September 14, 2007

For those that have been following the protected posts, this won’t be a surprise, but we officially unenrolled Zane from school today.  A lot of prayers and discussion preceded this, but my stomach was filled with butterflies walking from the car to the door of the school.  Once I got home, both Zach and I were almost giddy with excitement and anticipation.  It is a little scary, but I know it is the right thing to do and will be a great thing for our family.

We are thinking we will get Miquon math with the Cuisenaire rods and possibly supplement with Singapore Math.  We are waiting for word from his speech therapist (they also have a residential school there) for a phonics program that will work well with his speech therapy.  (he seems to be gaining speech as he learns to read, so I want to get something that will keep that going and encourage better language).  We are also going to delve into the Handwriting without Tears with a little more deliberate attention for handwriting. 

The rest of the stuff will probably be covered in a comprehensive way with unit studies that combine history, geography, science and reading.  (and anything else we discover along the way).  I am going to look at the Five in a Row books for some inspiration, and have been browsing the internet for ideas.  We will probably be a bit more freeform with this, finding books and then expanding on them as Zane leads us. 

We also got a few piano books two weeks ago, before we decided to homeschool, that will be a good addition.  One is the theory book and one is the practice book.  Most of music will still be the more free form stuff, but I would like to start teaching him how to read basic music at least, and maybe start him on the piano.  I am not very good at piano, but I understand it enough to get started until we find a Music Therapist or Music Teacher who can understand how to teach Zane.

I think we will find ourselves more in the “unschooling” or “child led learning” more than a strict school schedule for most of the things.  (ala John Holt)  For him, math is fun and we will let him choose the pace because I don’t want to hold him back.  There are some things that will be a little more pushed, like Handwriting, but I am going to work to break it up in short segments so it doesn’t overwhelm him.  Same with the phonics.  As long as he enjoys it and keeps progressing, we will continue to be child led, but we might have to push a little here and there to get him through some of the things that are harder for him. 

I guess it is a rather eclectic approach, but I think it will suit us well. 

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13th September 2007

Thursday September 13, 2007

He ran up to the guy handing out maps and enthusiastically reached out for one.

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In the FFA building, looking at a few animals.

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When he saw the giant slide come into view, he ran to the front of the stroller, blocking it so we all had to stop because he wanted to go down the slide.  (the slide is a permament fixture on the fairgrounds and really tall).  He loved it.

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Then the traditional “Pronto Pup” lunch.  Zora wasn’t sure initially, but enthusiastic once she got a taste.

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My big helper (otherwise known as “you aren’t moving fast enough”)

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We split up so Grandma could go with Zora and Zane could go ride some rides.  Last year we stopped at one ride because he was just not too sure about it, but this year he seemed slightly more enthusiastic.  We ended up having to buy a lot more tickets than we planned, but he was having more fun than I think he has had in…well, almost ever.  He was so animated and excited we almost couldn’t believe it.

First, the fun house.  (otherwise known as motor planning in the extreme).  The exit barrel is turning.

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Here is where we really get going.  Zach said he talked nonstop all through the ride.

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Then he wanted the flying ride.

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And then about fainted with excitement seeing the roller coaster.  (He spends hours on Roller Coaster Tycoon video game, so this place was like his game had come to life and he was beyond excited)

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Pulling on Dad’s hand, wanting to go back to the ride…

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…until we pointed out this ride, the “older kids” roller coaster.

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and then the log flume caught his eye.

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And we decided to finish up the rides with the grown up coaster, with both Zach and I riding with him.  He adored it.  The seats spun every time we turned the corner.  I think Zane liked it more than me.  lol.

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Meantime, Zora had fun in the play/learn center for kids.

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I think mom wore her out.  lol

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After we met back up again, we did the traditional train ride.  Zora’s first and only ride.  (this was something I did growing up, and I think my mom did too.  It weaves through the fairgrounds as a permament fixture)

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Zane sat in the front, in the “coal car” and thought that was pretty neat.

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One last ride, on the (fairly) new ski lift thing that runs across the fairgrounds.  Some alone time with Grandma before heading home.

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On our way out, we said goodbye to the animals.

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This is Zora a few seconds after being told no.  (after she tried to walk behind the cages)

My little pistol.

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To say Zane had a good time would be the understatement of the century.  The only downside is that he is obsessed with going back.  When we got home, I needed to make a quick run to a store.  When I left, he was beside himself upset, convinced that I had gone back to the fair without him.  He put on a shirt, asked for a specific pair of pants (and then asked for them to be put in the dryer because they were damp), then found and put on socks, and asked for help to put on shoes.  He also got Zach’s shoes, slid them on his feet, and pulled at his arm saying “Time to GO!” over and over.  Zach asked where he wanted to go, he said “to the car”.  Zach asked where in the car, and he said “to the playground, to the parade”  (he couldn’t retrieve the word “fairgrounds”). 

Every time since the fair that anybody has left the house, he wants to go with us, convinced we might decide to go to the fair.  Every time it is apparent we are going home, he starts to cry, insisting we “go back, go back”, and when we say “where?”, he says fair/rides/parade/playground.  He is just heartbroken we aren’t taking him back there.  He carries around the map with him, telling us it’s “time to go!”.  He won’t take off his shoes until it is apparent we are definitely going to sleep just in case we decide to go.  I have never seen him so driven.  I wish we could go.  It is beyond fun to watch how much he enjoyed it.

 

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  • Zane's age

  • Zane is 15 years, 11 months, and 22 days old
  • Zora's age

  • Zora is 11 years, 11 months, and 26 days old
  • Random Quote

  • Each person has something no one else has or ever will have. Encouraging our children to discover their uniqueness and helping develop its creative expression can be one of the greatest gifts and greatest delights of parenthood — Fred Rogers

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