Out of Sorts

June 16, 2008 at 8:47 pm (Arghhhh!!, observations)

It’s been a rough couple weeks for all of us, particularly Sophie.  Between allergic reactions, ear infections and an ASAP mole removal she’s been a little overwhelmed.  Let’s not forget the side effects of all the meds that she’s suddenly found herself on!  Between the mood swings from the Prednisone and the hyper-crazy from the Amoxil (red40) she’s been a basketcase.

This afternoon everything came to a head with her screaming and throwing punches (a first) and crying and throwing herself on the floor in a giant puddle of misery.  I ended up physically carrying her to a chair and normally I can hold her and talk to her and we can come to some sort of peace, this time she was unconsolable.

So… I took her to Jim’s room (it’s where he sleeps when he works as we put up darkening shades so that it stays dark) and held her until she finally admitted that she was sad.  And that’s as far as we got.  She’s sad, but she doesn’t know why.  I think all the meds and colorings and flavorings and chemicals that she’s so not accustomed to have just wrought havoc on her poor body.  After nearly 20 mins of fighting she finally rolled over and said “I love you Mommy, but now I sleep”  and pretty much immediately went to sleep.

I failed to mention that she’s been in a plundering phase and plundered through our bathroom and decided that she’d be “just like Poppy” and use shaving cream.  On her face.  Not a good move on her part.  That with everything else just pushed her clean over the edge.  I had a feeling that we were heading for a meltdown when she was being over animated and dramatic with some of her toys. 

I know it gets better.  I know it’s a phase and really it’s the allergens and additives talking… but I hate this for Sophie.  It wears her out and she gets so frustrated that she can’t communicate what she’s feeling.

 

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Fratchity

March 20, 2008 at 4:31 am (observations, schooling, the daily do)

I’m having one of those days were everything is just not quite right.  The noise level in the house is one decibel too high, the light in the room is one watt too much.  Everything is just one tiny bit out of line and I absolutely can’t stand it.  Even my tea… slightly not sweet enough and slightly too cold. 

I really hate when I get in this sort of mood.  I have a couple big things that I’m wanting to work on and I just can’t seem to get them “scheduled” into my day.  Everytime I start, something else demands attention.

On the plus side, Sophie is reading well enough to pick up some of her early reader books to read on her own.  Only thing is, she only reads outloud so there’s a continual stream of words coming from her and it’s adding to my overstimulation.  She’s currently asking herself questions about what she just read. 

Sophie- can you find the letter B?

Sophie- why yes!  It’s right there!

Sophie- Now Sophie needs to find the key.

Sophie- It’s right there!!

Sophie- I spy a hair thing, do you see it?

Sophie- There’s the hair thing over there!!

Sophie- Good, now let’s turn the page….

Really, I’m happy that she’s reading, but this I spy book is driving me mental as every line her voice gets more shrill and hyped up.  About every three lines I have to call her down to reset her volume/shrillness levels!

School has been going fabulously for Sophie.  She goes through these receptive phases where she just drinks in new knowledge and it’s like we have to do as much as we can those days and then spend her non-receptive days reviewing the previously learned materials.  We’ve continued using the Time4Learning programs with great success and will continue doing our bizarre dance between computer learning and unschooling.  It’s weird, but it works.  Today has been mostly an art day.  Sophie and all the boys have been painting.  This was the first time we’ve had all 3 painting together… probably not the greatest thing for Sophie as Beckett kept trying to steal her paints, but it was an interesting exercise.  Beckett really just smooshes the brush around, while Xander really wants to paint a picture of something.  Sophie is still in a weird stage painting-wise as she’s not doing much interpretive painting or representational (correct word?  maybe not) painting… she’s just moving color and playing with shapes.

We’ve also decided to reapproach handwriting.  Sophie does not like to write by hand at all.  She gets frustrated and just shuts down any cooperation effort whatsoever.  So, we decided to get creative.  The Lamy ABC hasn’t come in yet and since we’re all in a big pen and ink phase, M collected some feathers from the turkeys and cut some quills for us.

There is a whole art-form to writing with a quill, which some would say is too much effort for a typical child, let alone Sophie.  It requires a light hand and you do have to re-dip fairly often (we’re using molted feathers, not the prefered blood feathers that hold so much ink… our quills only hold enough ink for a couple signatures).  To write well with a quill requires learning the nuances of that particular one and knowing whether or not you can pull off an upstroke without splattering ink!  It also requires the writer to slow down to some degree instead of jotting across the page in a mad dash.  One of our quills will tolerate that sort of writing, the others won’t.

Sophie pretty much thinks that she’s died and gone to Hogwarts!  It’s almost like she goes into a Zen state as she carefully dips and taps off her quill and carefully practices writing her name.  She does get hyped up when she watches other people write, but I think that’s because she’s anticipating her turn.  We spent a good half hour playing with inks and the different quills and she literally cried when we put them away.  Putting them away probably adds to their mystique as I keep them in a locked boxed so that little hands don’t upend my semi-permanent ink on the wood floor! 

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Show Me “Sad”, Show Me “Sorrow”, Show Me “I Don’t Care”

February 6, 2008 at 3:33 am (the daily do)

One of the things that has been repeated over and over to us is that ASD kids don’t “get” emotions.  Even our B/D doc keeps telling us that Sophie should be disinterested in our feelings, but we’ve always found that to be untrue.  She is very much aware of our feeling and picks up on our moods quickly.  She’s particularly quick to read the mood of a room and she’s even quicker to understand the dynamics of a group of people.

All day today Sophie has driven us crazy with her camera, so tonight Jim turned the tables on her and gave her the paparazzi treatment.  That quickly morphed into the stereotypical photoshoot with Jim directing Sophie to “show me happy, show me sad”.  Sophie has a very expressive face so when she’s demonstating an emotion she really goes for it.

Sad
this is SAD

Sorrow
This is SORROW

 Apathy
This is APATHY (although the direction Jim gave her was “don’t care”).

I like the difference between SAD and SORROW.  I think that indicates an understanding of emotions… maybe it’s just me.  She did do HAPPY and SILLY, but those weren’t nearly as powerful…

OK…well SILLY was pretty good, but she closed her eyes with the flash… it’s still pretty silly though.

SILLY

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** (updated)

January 31, 2008 at 3:56 am (schooling)

update:  I emailed with Russell at Nota-Bene again and he’s informed me that he can order the 3.15mm pencil, but it will take 1-2 months for it to come in, which is just fine with me.  So Nota-Bene it is!!  I just can’t applaud their customer service enough!! 

I never did address the whole fountain pen thing in my last post.  Sophie has become quite fascinated with my pen.  So much so that I’ve been letting her write with it and she’s actually doing quite well.  Her handwriting has greatly improved but the Phileas is a little too “advanced” for her.  So I did some research (God Bless the Fountain Pen Network!) and found the Lamy ABC pen and pencil.  Apparently these are the school pen and pencil de rigueur in Europe and are for all intents and purposes not available in the US.

Bummer.

I did find a company in Canada, Papeterie Nota Bene, that carries the fountain pen and the 1.4mm pencil.  I want the 3.15mm pencil, but they do not carry that one.  I found the 3.15mm pencil at Skripta-Paris. 

That’s Paris, as in France… the country.

If I get the pen and pencil (with a pack of extra lead) from Skripta-Paris it ends up being just over 28 Euros.  Which is about $42. 

BEFORE shipping.

Just shipping is 22 Euros.  Which is nearly $33.  So a total of $75.

Grrrr.

If I order the pen and the pencil that I don’t like as much from Nota-Bene, it ends up being something like $55 CAD which is about the same in USD.  Shipping is like $12.  So a total of $67.

I’ve emailed with Russell at Nota-Bene and he’s impeccably nice, but I’m leaning towards ordering from the French company as it’s not appreciably more (Damn that shipping!!) in the long run and I’d get the pencil I think will be better for her hand.

Why me?  Why do I care?  I mean… why don’t I just get a big fat Ticonderoga and wrap tape around it to make it fatter?  Why don’t I do, as M suggested, and just buy her a graphite pencil and wrap the shaft so it’s less likely to break?

Because….

Sophie’s like me.  She’s enthralled with the “neatness” even the “beauty*” of the thing and that’s the thing she must have.  So if spending a ridiculous amount of money on a European pen and pencil will help her write, or make her want to write, then I think it’s money well spent.

* OK, so I realize the ABC isn’t a particularly pretty pen/pencil, but you must admit it’s an awfully neat looking thing!  The 3.15mm pencil can hold crayon “leads” too so I think it would be excellent for Sophie’s art work as well.  Russell at Nota-Bene counselled me against the 3.15 as it’s considered an art pencil in the US, not a writing pencil, but knowing Sophie that would be the better pencil for her.  My research also indicated that the European schools use the 3.15 because there’s much less lead breakage and it leads to a nicer (read distinctive) hand writing.  Whatever, we like it.  Now I’ve just got to rationalize spending the money on it. 

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But Why?

January 30, 2008 at 8:17 pm (adventures, observations)

 *

I had to run some errands the other day, late in the day.  M had the boys with her while she set up the feed for the animals and Sophie, who had been having a bad day with her brothers, decided to come with me.  She loves to go into G’ville so once I told her that’s where we were going she was quite excited and we had to go through a whole to-do about she was going to wear (with the giraffe boots, the only shoes she’ll wear are the giraffe boots!) and how she was going to do her hair (2 horns, aka braids, or just loose hair which won out because I was running out of time!).  So we piled into the car and started off on our little adventure.

When I got on 85, I had one of those weird out of body moments where it felt like I was observing what was happening from outside the car.  I had brought our iPod and Sophie and I were singing Avril Lavigne’s Girlfriend (the clean version, but really we all know what she’s saying and speaking of that… how do the lyrics of the Kidz Bop one go?  I mean the radio version just beeps out the one word… how does Kidz Bop deal with the “what the Hell were you thinking?” lines??  Sorry, just got to wondering on that one).  Anyway, we were both belting it out and it was just one of those weird moments where everything was perfect (ok so admittedly, it could’ve been a better song, but let me finish my story) and I don’t know if Sophie thought so too, but she managed to catch my eye in the rear view mirror and gave me one of her million watt smiles. 

Did I mention it was Sunday?  Around 5:30 and the place we were wanting to go to closes at 6?  So anyway, we were hurrying and did manage to convince the girl at Petsmart that she couldn’t bar us from entering the store with 15 mins until closing and were able to pick up cat and dog food (and there was much rejoicing, and the cats laid down with the dogs and… I really shouldn’t eat ramen noodles while I’m typing, MSG man, it’s a drug).  On leaving I made a rash decision to go into Office Max to check out their ink situation and to see if they had any of the cheaper fountain pens** (this all concerns Sophie, just wait).  The staff were useless and the ream of paper that I toted all the way to the front is actually still there as the cashiers had already closed down their registers.  The store was still open at the time, I might add.  Most frustrating.

So anyway, on our way back to the car Sophie asked me why we didn’t get the paper, and I gave some bland response that offered no real explanation.  So she got in the car and I noticed she was wearing a particularly sulky expression so I asked what was wrong.  She responded with “you never explain why.  Sophie asks why and you never say.”

To say that I was blown away wouldn’t suffice.  I literally sat there for a moment and processed what had just happened before going into a long and detailed explanation of why stores close early on Sunday and how the practice started and so on.  It was a good 5 minute explanation and at the end she said “oh, ok” and that was it.

So since I was feeling that things were good, I decided to treat Sophie to a trip to the bookstore.  At first I thought I might have made a mistake.  Bookstores are like Candystores to Sophie.  She can’t get enough of them!!  So we went straight back to the kids section and she started prowling (because there is no other word for it) for a book.  She went through a couple maybes before settling on a Star Wars pop up book (a nearly $40 value!) and while I was quite fascinated with the book as well, I knew that realistically, it wouldn’t last an hour in our house with the boys.  So… as much as I wanted to get that book I decided to see if Sophie was still willing to compromise.  It went down something like this:

Me- Sophie do you really like that book?

S- Yes Mommy, it’s Star Works (she says Star Works, we can’t break her from it, she’s taught Xander to say it too).

Me- Yes I know, but it’s such a big book. 

S-  Yes, Sophie likes it.

Me-  Why?

S-  It has pictures and monsters!!

Me-  Can we read it?

S-  Ummm…..

Me-  Would you be able to carry it in the car?

S-  Ummm, Sophie really likes Star Works.

Me-  Oh I know, but I just thought you’d like a Star Wars book that you could carry in the car.  That big book is more like something you’d get for a birthday or Christmas… it’s not just a regular book.

S- Not a regular book?

Me- (acting disinterested) No, it’s a special book.

S- A special Sophie book?

Me- yeah, you know, one that you have to ask for and then wait… kinda like Santa Claus….

S-  Oh….

A long pause, where she continues clutching the book to her chest.

S- Um, Mommy ask lady for Star Works book?

Me- Why don’t you ask?

S- OK.  (and she does!!!  Do you believe it???)

Me-  So do you like this book?

S- it’s ok (said with a snarled nose).

Me-  It’s easier to carry in the car.

S- (no comment)

Me- and it’s cheaper than the other book.

S- (again no comment)

Me- so we could get ice cream if we got this (the smaller) book.

S-  Vanilla?  with chocolate chips and gummy bears?

Me-  Yeah, but it’s up to you.  (I walked away from her and watched her wrestle with the decision.  I think it was a close thing, but she put back the pop-up book and got the smaller Star Wars book instead).

So we left, like normal people, with no crying.  I think that’s a first.  Of course we went for ice cream (it’s across from the bookstore) and she was perfectly polite even after eating “trigger” foods.  M called during the ice cream outing and sent us to get supper from Whole Foods.  I had serious doubts that Sophie would maintain her good behaviour after ice cream, but thought what the heck… let’s try.

So… Whole Foods.  Why is it that WF is covered over on Sunday evenings?  Does this make sense to anybody?  And knowing that it’s going to so busy, why is it they only have 3 registers open???

I digress (blame it on the MSG).

Anyway, Sophie and I were discussing our grocery list.  It wasn’t much and I had her “remember” parts of it for me.  We had whole discussions on the merits of red versus yellow tomatoes (Sophie thought the yellow ones were too weird), whether Wellshire Farms bacon is better than WF’s brand and does anyone really like AppleWood bacon….  We got around to one of Sophie’s big triggers and I steeled myself for a meltdown.  The bistro in WF is one of Sophie’s favorite experiences and once we got to that end of the store she started angling to eat there.  When I said we weren’t eating there, she asked why.  So I explained that we were only picking up a few things so that we could make supper when we got home.  To which she asked why.  So I explained further that M didn’t want a big supper since lunch had been filling and that we were just going to have sandwiches for supper.  To which she asked why.  So I explained that all M really wanted was a bacon sandwich with chips.  To which she said ok.  And that was it.  No tears, no crying, just OK.

Weirded me out.

But I kept cool and we continued shopping, filling her little customer in training cart to the brink, only to discover that it had one of those trick wheels that made it careen into anyone nearby.  Honestly, that was some of the funniest dialogue of the whole evening as Sophie wrestled with her wayward cart!

Anyway.  While I was deciding on which combination of frozen fruit would make the best compote for Dandy I noticed that I was sans Sophie.  When I turned around, I found her pushing her cart with one hand, while daintily eating a choc. chip cookie.  I said- who said you could have a cookie?  she said- Sophie said Sophie could have a cookie. 

The self assured smirk was almost enough to make me laugh out loud, but instead I encouraged her to ask an adult next time so that she could get the cookie she really wanted (turns out she ended up with a pnut butter/choc chip and she’s not so fond of those) and she agreed that maybe that would be better.

So we queue up to leave.  Remember when I mentioned that there were only 3 registers open? 

Our line went back so far as the baby food aisle (which by way, Tina, I bought all of kids baby food too) which turns into the cosmetics aisle.  So since I had a feeling I was going to be there a while (and we were), I decided to make friends with the lady in front of me.  She was very nice, moving to Costa Rica, yada, yada, yada… then I noticed, no Sophie.  Again.

Turning around I see that she’s sitting up in one of the cosmetic chairs and from the distance I couldn’t hear what she was saying, but I noticed that she seemed to have an audience.

So I asked my new found friend to save my place and went to fetch Sophie.  As I got closer I heard this:

S-  … to brighten the brow, you want to add color…. oh…. umm… Hi Mommy.

M- Sophie, what are you doing?

Cosmetics Lady-  She’s been giving us an very good tutorial on how to wear makeup.

Me-  Oh really?

CL- yes, actually everything she said was spot on.

I smiled, collected Sophie.

CL-  By the way, I love your boots.

S- Thanks!  Aren’t they fabulous?

Really, I tried to act like this was normal, but I was somewhere between rolling my eyes and bawling!!  My little crazy girl, acting all normalish!  And where does she get this language and the prissy attitude? 

I don’t know… but I’m liking this talking fashion diva version of Sophie. 

*  Please ignore the clutter, I still had Sophie’s school books and pens and pencils all over the place.  And there was still paint splattered on the floor and yes those are Christmas decorations still on the wall.

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Back to School

January 11, 2008 at 4:37 pm (schooling)

Sophie’s schooling has undergone some serious transitions this year.  We tried doing the Enki-Method, and I think it failed due to us getting the wrong grade level.  I tend to underestimate Sophie’s academic abilities and so opted for her to start with the K level when she should’ve gone to the G1.  She has been completely bored and resistant to pretty much anything from the Enki materials.  We’ve tried modifying to meet her needs, but the truth is, it just doesn’t work for us.  I was tempted to try the G1 curriculum, but it’s so dang expensive, that I’d hate to blow another couple $100 on something we’re not going to like using.

So we’ve gone back to “unschooling” as that has worked the best for us in the past.  By “unschooling” I mean that we allow her to follow her interests (currently dinosaurs) but she still does modified workbook work and things.  I’ve had the hardest time explaining how we do math with Sophie.  She only gets it from a practical standpoint.  Like why would you need to know that 3+9=12?  But she has no problem with me asking her how many more eggs does she need to fill the carton if I have 3 in my hand.  She can do that without even thinking… well at least some of the time.  She gets ill with me when I go over the top trying to come up with subtle ways to integrate her academics into her everyday life.  Some days I’m really good and she doesn’t actually realize that she’s been doing school for 4 hours.  Other days I get about 10 mins into my subterfuge and she’s on to me and her desire to cooperate totally evaporates.

I’ve had to really back up with a few things with Sophie.  I’ve had to go back to some K level things to try to work on her hand dexterity as she’s very awkward with her pencil and that makes her writing very difficult.  I tried explaining that to somebody recently, and they countered that Sophie paints and draws so she should have good dexterity, but the thing is when Sophie paints and draws she’s doing her own thing and doesn’t have to stay within the bounds of handwriting or even coloring in the lines.  So basically now she’s learning control, or more accurately, fine control.

Last night she and I did a coloring book page from her dinosaur coloring book.  Sophie’s required a lot of trail and error for me and I finally realized part of our problem with coloring books was simply that there are too many options when you open the book.  Most coloring books have at least 30 pages so think about all those options.  Sophie couldn’t focus on the page she was coloring for wanting to go to the next page, and the page after that and so on.  So, I’ve taken to deconstructing her coloring books and storing them in a manila envelope.  That was I can take out one page and she can color it without being distracted. 

So anyway, we were coloring last night and I noticed that she was becoming overwhelmed by the options on the page.  Should she color the big dinosaur or the little one?  what about the ground?  and that bush?  and the log?  and the sky???  what to do?  So I backed up and handed her the box of crayons and said “you color the big one and I’ll color the little one so what color is this dinosaur” and she handed me a color for each of the dinosaurs.  So then I noticed that she was getting overwhelmed again by the options on the dinosaur.  Should she color it’s head? its tail? its feet? its back??  So again I suggested “why don’t we just color in the tail?” and so we did and she was happy, then she noticed the head and started coloring it and when she finished that she stopped and said it was my turn so I colored in my dino’s head.  This continued all along the page with us moving from one little step to another until the picture was done.  I was very proud of her and she was very proud of herself!  I let her pic out a couple stickers and she picked ones just like the dinos in our picture and stuck them next to them on the page.  That little masterpiece is now proudly being displayed on our refridgerator!   I know it’s a small step, but it is a step and that’s a good thing!

I let her do the flip side of that coloring page too and she started getting bored with it about half way through… plus she was arguing with me over whether the picture was of a dinosaur or just of a fish.  She felt that it wasn’t a proper dinosaur and thus didn’t have to be done correctly.  After locking horns on it a couple times she did finish it carefully… I was glad to see that she reeled in her attitude and actually did finish the assigned work, even though she disagreed with it.  We’ve had issues in the past with Sophie making an effort to compromise… so seeing her compromise just this little bit was refreshing.

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Stuff

January 7, 2008 at 5:59 pm (Arghhhh!!, observations, the daily do)

I never got around to that Christmas post and now I don’t feel like doing one… so just go back to the other blog for pictures and updates on that.

The insurance issue has gotten really out of hand.  Apparently there is a major uproar with the hospital and Western Union as just about everyone has had disruption of coverage.  I’m supposed to call and talk to someone and see what can be done (or at least have my complaint documented).  My problem is.. I don’t know how much of this is a problem with the insurance or just a common problem for parents with ASD kids.  ASD isn’t reknown for being covered by most insurance companies… but I keep hearing people say that they’ve heard from a friend of a friend of a cousin of a boyfriend (you get the idea) that there’s new legislation that’s supposed to help ASD families… only trouble is that I can’t find anyone who can tell me definititively about it.  I’ve called so many people… and most of them are like “well, we’d like to help, but you’re not actually a client of ours so… sorry!” and I’m sent on my merry way. 

So how do I find out what the heck I’m even supposed to be doing?  At this point we can’t afford for Sophie to even go back to Dr. Kelly as the insurance is saying that seeing him doesn’t positively effect Sophie’s diagnosis so it’s not a necessary visit.  Plus the whole thing with therapy just isn’t working out either… again insurance is saying that since Sophie can’t be “cured” from her ASD/PDD diagnosis then there’s no “need” for her to do therapy. 

I think this has been the root of my Christmas Melancholy.  I just feel like I’m beating my head against a wall and I literally can’t find a way to stop.

And most of me just wants to stop all this madness and say “yeah, she’s different, maybe even PDD/ASD… so what? who cares?  she’s learning, she’s coping, she’s learning life skills!  Heck she can bake a cake pretty much by herself!! doesn’t that count for SOMETHING???”

As I told Dr. Kelly the last time I saw him… I’m cracking… I really am.  Sophie’s doing great, the boys are doing great… but now we’ve got what looks like insurmountable issues (between figuring out if we should still send Sophie to therapy and figuring out how on God’s Green Earth we’d pay for it and fighting with insurance and trying to figure out the secret trick to making all of this work, and did I mention that Jim’s a real laissez-faire kinda guy?  so he’s not really in the trenches here with me… I’m not bashing him, I’m just stating that he doesn’t have that she-bear fight that I have (and really I’d be surprised for a man to have she-bear instincts)… regardless I’d like to lay down the armor for a minute, have a pity me moment and then move on, but I can’t because who’s going to hold the fort while I do that?)

OK!  Enough of that… this is Sophie’s blog, not an extention of “oh-pity-me!”

Sophie… Sophie… yeah… Sophie… she’s doing great :)   She’s started doing art again, although she’s doing her most creative stuff with photography.  I’ve really enjoyed looking through her photos and will be uploading them here soon.  Maybe even today.  Don’t hold your breath though.

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Holiday Update

December 24, 2007 at 7:54 pm (adventures, observations)

You know, remarkably, Sophie’s doing great.  I had thought that the Christmas hubbub would have her whipped into a frenzy, but really she’s been a good kid.  Saturday was Jim’s Dad’s Christmas party.  I was a little uncertain as get togethers with Jim’s peeps can go really good or really bad… just depends on the flow of alcohol… and considering that Jim and I really don’t drink (I don’t count the occasional glass of wine with dinner, or apertif, or social sip… “drinking” in this context means drinking to oblivion) it can get uncomfortable fairly quickly if the booze are flowing fast.  I’ll save a review of the get together for a different blog, but for the most part things were ok… little more drinking than I felt appropriate for having kids there (particularly since near the end the boys were literally afraid of their newly met “uncle” who they had adored earlier in the evening), but nothing so bad as say Soph’s 2nd bday.

Anyway… Sophie was very involved with everyone and I think behaved really well.  There were a few issues, but those weren’t behavioural (more digestive, since she was eating foods that normally I wouldn’t give her).  I think so far this season we’ve been able to stretch out the anticipation so that she’s not going to crashing into Christmas morning.  She’s asked for 3 specific things for Christmas.  She got one of those Saturday morning.  The other two she’ll get tomorrow.  There are some other toys and things mixed in as well and then there are some things that are for all the kids.  We decided last night to give them one of their “all together” presents… it’s a spinning see-saw (I wrote about it on the main blog) and they’ve totally enjoyed it!

See, I’ve read both online, in books and have been told by parents of other atypical kids that they really need a safe way to bleed off excess energy.  So far this seems to be doing the trick without hyping her up at the same time.  A trampoline doesn’t bleed off as much energy as it ends up creating… yes, she gets tired, but she gets “high” off of the experience.  The see-saw seems to be much more calming and it’s forcing her to interact with someone else in a pleasing manner as you just can’t see-saw by yourself.  She’s taken to singing whenever she’s playing on it and since I guess she has the time and the focused mindset, she’s getting the words more correct.  If she sings when she’s just running through the house then she’ll totally mangle them so long as the rhythm and tune is correct, but on the seesaw she’s been much more careful with the actual words.  I have video of her singing Supercalifragilisticexpialidocious (Sp???) and the first time she’s totally rushing it and screwing up the words.  Her subsequent performances have been somewhat calmer and she’s getting the words better each time.  Maybe it’s a small thing… but I’m impressed ;)

I’ll update tomorrow again after the kids crash… I’m hoping it’s a good day for us all :)

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Two Events

December 10, 2007 at 4:19 pm (adventures, the daily do)

I’m still wading through the insurance woes… but I have heard that if our insurance covered her before then it’s believed that she has to continue receiving coverage… I’m waiting to have that confirmed so no we haven’t made any progress with testing or therapy.

On to our recent events!  We’ve been keeping busy this week :)   Tuesday we went to the Polar Express Dinner Train in Dillsboro (see other blog for photos and general gist).  Sophie did very well.  She seemed to understand that this was Xander’s thing and not hers, but regardless she was very sweet and well mannered.  She was very involved with the carolling on the way back to the train station but as soon as she recognized that the ride was almost over she started losing it.  We tried everything to distract her, redirect her, cajole her, ANYTHING…. but she just couldn’t reel it in.  She really did try to calm down, but it was just more than she could handle.  I’ve noticed whenever it’s something that she really enjoys or something that she knows she won’t be able to do again for a long time that she has a harder time of calming herself down.  She really did try… she was talking big deep breaths, but everytime another family would walk passed our table she would just start wailing and begging us to go again.  She ended up crying all the way to the car (Jim basically carried her) and then continued crying until I pulled a “mean mommy” and demanded that she stop.  She then snuffled and sniffled until she calmed down enough to start asking for something more to eat.  I really shouldn’t have pulled the “mean mommy” thing… but it’s been a long time since people looked at us with that “OMG that child is sooo spoiled” look and we got it from just about everybody on the train and for some reason it really got to me when normally it just rolls off my back.  Probably because she was so good during the meal and then tanked so horribly at the end.  I had to sit down and talk with her at great length about the whole thing.  She was much more understanding about the whole thing than I had expected her to be.  She actually seemed to get it that we just can’t do that in public to that extreme.  Saying that you had a good time and don’t want it to end is fine, having a full on meltdown is maybe not such a good thing.

So I hoped that she would carry that lesson forward into our Saturday outing with the Land Rover Greenville peeps (see other blog for photos and details).  She did great!  She was excellent at the breakfast thingy at the dealership and was mixing and mingling like a little socialite (“Well Good Morning everybody!  Nice to see you!  How are you doing?”).  She did get a little loud during the driving instructions but so were the other kids there, so I’m not upset about that.  She started getting upset when we left the dealership, but when we pointed out that everyone was going with us she immediately calmed down.  Oh, and some backstory… I bought her a medical id necklace that has her name, address and several ICE numbers plus a brief listing of her issues on it.  I told her it was her princess necklace and when she has it on she’s a princess and has to act like a princess… so no meltdowns.  So as she started getting anxious I pointed to her necklace and said “remember you’re a princess!” and she was like ahhh right! and pulled it back together.  So maybe a little trickery… but it worked.

So she had a blast on the drive up.  We’re kinda crazy go nuts parents and had the radio blaring and just had a great carefree drive to Asheville (I’m sure the cars in front and behind us thought we were insane, but regardless we had a blast).   When we got to the driving school we had another driver’s meeting and once again Sophie almost lost it when she realized the older couple she had taken a shine to were not going to be in our group.  I explained to her that we were all going to meet up again and that it was ok and she calmed down.  The actual driving course was a hoot and Sophie had a blast!  She was a great driving companion.  We had the windows rolled down and several times she would holler out humorous things to the other drivers (everyone would get out of their cars to watch each driver handle an obstacle).  My favorite being when we got stuck in a mud pit (see other blog for pics) and she hollered out the window “this mud is YUCKY!” which made everyone laugh.  She’s starting to really understand that she can effect people… like making them laugh, or smile (more on that later).  So anyway we finished the course and had another drivers meeting plus a group photo and once again Sophie started showing signs of getting anxious over whether the day’s fun was over.  It took a little more effort to convince her that there was still a picnic to look forward too, but luckily a couple of the other drivers confirmed what we were saying and she calmed down and was happy to get back in the car yet again.

At the picnic she was again in socialite mode.  She was exceedingly polite, thanking everyone for letting her come (unprompted I might add) and being sure to tell everyone that she was happy to see them there.  At one point she was doing her rendition of “Transylvannia Mania” from the Broadway version of Young Frankenstein (it was in the Macy’s Parade) which made everyone clap and laugh and she was really eating it up.  I didn’t try to stop her or guide her in anyway, and she had a grand time.  I think Jim and I were both a little apprehensive going into leaving as we were anticipating a major meltdown, but Sophie thanked everyone again, said her goodbyes and beat us to the car!  Not a peep out of her!  It was amazing!  She has since talked a great length about how much fun she had both there and on the train earlier in the week without getting overly emotional.  I’m hoping this is a sign of a good change :)

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Crazy Go Nuts aka Whinning Post

November 22, 2007 at 1:52 am (Arghhhh!!)

A couple days ago we called our insurance company to find out if the genetic testing, deeper assessment and therapies that Dr. K wants are covered.  We were informed that since Sophie has a tentative diagnosis of PDD they will not pay anything. 

Nothing.

At all.

Ever.

Kidnetics (the therapy group) is in network, but not if you have a neuro, developmental, or behavioral diagnosis. 

Interesting.

Most of the reasons that you would go to Kidnetics is neuro, developmental or behavioral.  GRRRRR!

The lady I spoke with from our insurance was rude.  Exceedingly rude… unforgivingly rude.  She snidely said “well good luck finding another insurance since this is now considered a pre-existing condition <hehehe>.”  That was so uncalled for, especially since I hadn’t mentioned getting different insurance coverage.

So I spent part of this afternoon calling a few places.  All but one was closed already for the holidays.  I did get in touch with someone at SCDDSN who did everything in his power to help, even though he’s not in the autism/PDD department.  He’s supposed to do some footwork/networking for me and get back to me on Monday.  That’s work much appreciated! 

I honestly have no idea what we are supposed to do now.  I’m going to call Kidnetics to see what they say and see if they take the PDD waiver (I still totally don’t understand that so anyone out there who understands it please leave a comment!!). 

And it’s not helping that Sophie is bouncing off the walls and going mental because Iz will be here tomorrow.  She thinks that she and Iz will be going to castle but that’s not going to happen this weekend.  We are going in 2 weeks, but that’s a hard concept for Sophie to understand.  We’ve had a lot of melodramatic meltdowns today (she just had one over being told no) and I’m certain she’s going to continue spinning out of control until Iz gets here.

So I allowed her to do face paints this afternoon.  That bought me about 2 hours of happiness, then back to the craziness…. but I think that had something to do with the paints.  While the face paints are the ultra safe ones, they still hype her up.  Supper was a semi-fiasco.  Sophie, who normally eats like a horse, decided she wouldn’t eat, which prompted Dandy, who never eats well, to refuse to eat as well.  While I was fine with them not eating (with the understanding that they wouldn’t eat again until breakfast), M out ranked me and cajoled, threatened and physically fed the two of them. 

There are now tears coming from the kitchen, with Jim saying a lot of “no ma’ams” which is never good.  I’m voting for a super early bedtime tonight.

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