Archive for October, 2013

boo thanks you

Yay!  Jonah’s school updated their website.  If you click here, you can buy a set of 8 winter-themed cards (2 will be Jonah’s elf) for $10 each.

Boo thanks you!

Jonah made a perfect cave-boy  (Halloween of 2003; he was 19 months old)

Jonah made a perfect cave-boy for Halloween of 2003; he was 19 months old

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I have received a strangely overwhelming number of requests for boxes of the winter cards I mentioned in my last post, so I called Jonah’s school and of course there are extra — plenty to go around.

For the mere price of ten dollars, you too can own one of these “Boo Boxes”!

You can order them from the school’s website, but you’ll notice the “winter” cards look different from those in my last blog post.  (They’re from last year).  So if you want a Boo Box containing Jonah’s design, just wait until I post a blog entry (once the web order site is good to go with this year’s cards).

You can also post a comment saying you want one and I’ll get it for you, and mail it to you too, at no extra charge!

There are eight cards in each box, two each of four designs, so every  Boo Box gets you not one, but two of Jonah’s elf cards!

The now-famous elf card

The now-famous elf card

All for the low, low price of ten dollars!

Be a part of “Normal is a Dryer Setting” history and own one of Jonah’s truly unique brainchildren.  Or just send some cards out, and another person will find one years from now in a dusty flea-market bin when it’s out of print and worth millions.  Do you really want to take that chance?

All proceeds benefit the Anderson School for Autism.

Jonah ponders his next masterpiece

Jonah ponders his next masterpiece

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Every year at Jonah’s school they have Harvest Day with food and fun, games for the kids, school tours for the parents/grandparents, etc.  Harvest Day 2013 was this past Saturday; my mom and I went together to visit Jonah’s classroom.  Andy had taken him for an overnight the night before, so we visited there first, then drove the 5 miles to the school, and back to the apartment afterward.

So we saw Boo’s classroom and spoke with his teacher and an assistant teacher.  We snacked on apple cider & apple cider donuts, looked through piles of worksheets and construction paper creations (plus one bottle of blue water with “fish” and “sand” in it).  I loved at it all and brought everything home with me, even unrecognizable scribbles or coloring books he’d made out of pages and a piece of string to tie it all together, the pages crayoned heavily, each in one color only and with no attempt at staying in the lines.  It was almost as if he didn’t see the picture at all and instead just filled the page with color.

They also told us Jonah has been mostly very happy and good in school for a few weeks now (and his residence peeps say the same thing), and my mother and I were both thinking:  It’s when the doctor lowered the steroid eyedrop dosage from every two hours to just twice a day.  Maybe that’s it, and now his aggression will dissipate.  Please God…

One doctor told me when you are given steroids through eyedrops, it doesn’t really have very much effect on mood or behavior.  But I was once a Deadhead, doc, and have seen people use an eyedropper to take acid because it was the fastest way to get the drug into the system –better absorption, quicker effect.  So I find it hard to believe that steroids, no matter how they’re given, don’t have any bearing on Jonah’s behaviors.  In fact if I piece it all together (which this blog helps me do), his behaviors began the summer after we started him on steroid eyedrops, back before we knew he had iritis or uveitis.  Andy noticed his eye was red so we took him to an eye doc, and the first eyedrops didn’t work, and the whole saga began.  Nearly four years ago? 

So now Jonah has no vision (or hardly any) in his left eye, but his behaviors are more easily avoided with positive reinforcement and by reminding him it’s okay if he needs to take a break.  All he has to do is ask for one and he gets it.  I think it’s even in his IEP.  These people who teach and care for Jonah have good ideas and incredible dedication.  They are happy, optimistic, hard-working.  They are amazing.  And God help me but I don’t so much mind the trade:  sight in one of Jonah’s eyes for his overall happiness and well-being – for no more aggression, or way less of it.  Maybe the steroids caused the aggression the whole time…

…and yes we both know correlation does not necessarily imply causation, but then again sometimes it does, dammit. Sometimes it does.  We are in hopeland, holding tight to the pendulum lest it swing back, as if we had the strength to keep it from doing anything but what it does.  But Jonah has been happy, lovey, laughing and giggling – at the doctor, at Andy’s apartment, during our car rides:

happy boo

happy boo in andy’a apartment.  needs a napkin!

happy boo

happy boo at the pediatric rheumatologist, rocking the wrinkled collar

happy boo

happy boo, laughing on a car ride

Of course I could be wrong about it all but hopeland feels good and is so filled with joy – there really is no reason to leave.

But I digress.

Only one couple was there when we were talking with Jonah’s teachers, and they left the room after a bit, so my mom and I could ask more questions about Boo.  Seems his favorite day is Friday, when he can declare/ask no school tomorrow?!  I suppose in this sense he’s like a lot of other 11-year-olds.

So on the way out, we stopped at a table where two ladies were selling cards.  A set of 10 is $10, and you get two cards each of four designs, themed for summer/flowers, wintertime, etc…and every design is created by a student at the school.  Last year I bought two packages, and I was planning to buy two more.  I chose two ‘summers’ and was about to pay when I first introduced myself.  “I’m Jonah’s mother,” I told them, figuring they’ll know who he is — he’s the only Jonah in the school.  “Oh!” one of the ladies said.  “Jonah has a design this year.”  And she pulled out the “winter” package. 

I immediately dropped the two others and bought two “winters” without even seeing Jonah’s design.  I was so eager to look through them, and amazed that Jonah’s artwork has been chosen for a card!  I mean, the designs are always pretty good – and some are really good.  But Jonah just isn’t interested in art or drawing.

Therefore, I found all this hard to believe.

The cards come in see-through plastic packages, and the card you can see through the front panel of the “winter” package is this:


Cool, right?   I thought so.  Here’s the next one:


Downright amazing, yes?  I was secretly hoping this one was Jonah’s – but no.  The third card out of four was next:


Nice use of cotton for the snow, right?   Another goodie.

So last comes Jonah’s masterpiece, entitled, simply, “Elf” — of course I loved that he did an elf…


It was all I could do not to crack up laughing right at the table.

I’m thinking to myself, this is the card in the box that people don’t even send.  I love it with all my heart, even as I laugh.  I’m so proud of my Boo.  You see how he signs his name?  He starts off on the right, with JON — then moves over to the left side to add AH.

HOPELAND ART AUCTION:  We’ll start the bidding at a hundred dollars.

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What’s amazing is how long it sometimes takes me to tell a tale of Jonah, or research something about a drug he’s taking, or read his progress report after I’ve opened and discarded the envelope.

There is one such progress report, in fact, sitting on the coffee table in front of me, right now – just an arm’s length & reach away from being read – but I don’t read it.  I don’t want to read it.  I don’t want to read about his goals to “independently identify six sight words,” with staff notes speaking of his wonderful progress to “read 5 sight words with 20% accuracy.”  I don’t want to call his residence at night to ask how he was and what he did that day, and I don’t want to know there’s a class-action lawsuit commercial on TV now against one of his med companies.

I approached a renowned autism doc (his cousin is my mom’s neighbor) about different meds but he wouldn’t touch my question with a 10-foot-pole, answering in his e-mail back to me that he could not comment.  I e-mailed my neighbor Chung Wen’s son, who is a doctor, and more specifically his field of study is pharmacokinetics, (how drugs get in and out or metabolized), and he has offered to help me, so I finally sent him the list of meds.  I wanted to wait until Jonah’s meds stabilized post-eye-op, so it wasn’t until this morning that I sent the e-mail.

If he replies, I guess I won’t want to read his e-mail either.  I want to know there is away out of this for my boy and I have a sinking feeling there isn’t.  I am afraid to mess with his meds.  I guess I’ll have to see if any of the questions I’ve thrown around get answers.

The wonderful thing about everything, however, is how Jonah has been happy lately, a silly boy laughing with his mischievous sense of humor (splashing water out of the tub, running & jumping around and trying to avoid a capture to dry off)…on Saturday I heard my favorite words, “more kiss,” many times.

Of course more kiss! 

When Boo is in a lovey mood it melts my heart.  I love when he’ll pause in all his joyful silliness to lay on the big blue bed with me and have quiet time, lying facing each other and giggling.  This lasts a minute long at best but carries me through many a night.

I took a bunch of pictures on my new LG Spectrum 2 phone (whatever that means) and have yet to figure out how to download things onto my computer.  I hate reading manuals and so my knowledge consists of much trial and error, and a lot of “I’ll figure that out later.”

I don’t understand how I can download an app that turns my phone into a flashlight, for instance, but I haven’t the ambition to wonder why.  Perhaps as you enter middle age (is that where I am at 44?) your mind can’t wrap itself around some of what is coming up behind and all around you, particularly in the realm of technology.  I hear tell they’ve invented an actual invisibility cloak and light saber. The mind reels.

One thing I dislike is waiting to be divorced.  It’s just a slow process.  The mediator wanted to know my new health insurance company, and then they have to mail edited shit to Andy, and then I have to bring it all into the office (I guess by coinflip I am the plaintiff here) and then I hope it’s over soon.  It is much harder emotionally than I thought it would be, even after the years of separation.

I have to not think too much about how it was when Andy and I first dated, and married, and how it used to be until Jonah-Boo, the “baby-est angel,” was 7 months old and my best friend Gina suicided, shotgun to the head.

Maybe that was the beginning of the end in a lot of ways.  I don’t know.

I guess I don’t want to know.

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