Hope

Hope tends to be either overused or underused in the special needs world. 

Either you are failing your child in some manner or another for "not believing hard enough" or you are not "taking advantage of available therapies".

OR you are a "pie-in-the-sky parent who doesn't see the reality of your child's current status".

I've been accused of both...and more.  Sometimes in the same conversation or IEP meeting.  So, go figure...

Once upon a time...several years ago, Elise and Gabriel (4 years older) were on my parents' sailboat in a bit of a gale.  Such that Gabriel, who has always been a bit of a boat baby, hunkered down in the cabin, praying that they wouldn't capsize and die.  The bizarre part, what that Elise who had always been a bit of the Safety Police, and was over-aware of every jiggle of the boat, was up on deck, hand-over-hand tightening the jib lines, her face to the wind, grinning.

It was such an odd reaction for the both of them that it was added to family lore.  And sailing was not the battle to get Elise from the dock to the boat from that point on.

This weekend, we went to a friend's house on the lake.  And Elise did her usual screech every time the dock moved more than she liked.  But she remembered riding on their motor boat, so she ensconced herself on the back of it so they couldn't take it out without taking her.  She eventually got the guts up to get herself moved over to an inner-tube, and then squawked while I tried to get her turned around so it wouldn't dump her out at every movement of the water.  All this time, she has been observing everyone out playing on kayaks.  There was one adult one that was a tandem, and two little singletons for kids.  She decided eventually that the tandem had to be tried.  So, with some significant effort, we got her on with her brother.  She thought this was so excellent that she needed to try a kid-sized one after she got back.  There were a LOT more panic-y moments getting her situated on that, but when she finally got on, she was so pleased that she actually spent the time figuring out how to work the paddle.

By the time came for her to ride on the motor-boat, she had figured out how to manage it amazingly well...only needing help with turns.  And she thanked me, and the spare dad she had borrowed, profusely for letting her play on the "Gak boat".  And now she pleads to go again periodically.

This is epic. 

I love to kayak.  I am in the process of getting one of my own.  I have been out with a friend a bunch of times.  But when I had this in my head, I saw this as never being something Elise could actually participate in, if I could even talk her onto a boat.  I was afraid that it included just way too much motor-planning.  But this weekend has given me hope that she could actually participate...and bask in it as much as me...and it opened not only kayak possibility, but the possibility of things changing in her motor status...which has been rather stagnant and depressing for the last several years, to be honest...and not on my own, but the information I have been getting from many of her therapists.

Adventures are still ahead.  And hope certainly is.

10 Things That Are Good

As promised, I do have some gumdrops and lollipops...Here are 10 Things That Are Good...

1)  Elise made her second fashion request in almost 11 years.  Twinkle Toes.  (In case you are curious, her first was little fuzzy "ugg" boots.)  I know you are probably wondering why this is a good thing?  Well, first, it shows a personal style preference, indicating that she knows her own mind.  Second, well, she had to put forth a request, and make it understood.  And "hingk hoes" is a little obscure for breakfast conversation...but she totally pulled it off.  (In a related PSA:  putting Twinkle Toes on your kid in the semi dark could easily initiate a seizure.  I felt well beyond weird the other morning, kind of space travel disoriented, but with a little gag-y eye pressure thrown in...)

2) Elise, while making rotten choices with Amelia, is keeping her hands to herself at school this year.  In previous years, it's more 2 no-touch-days in a school week...and this usually doesn't happen for at least 2 weeks into school year.  This year, she is more like 2 touching-days in 2 weeks...and it started with the start of school.  This is amazing.

 

3)  She is not wiping food on friends at school, and only occasionally on her sisters.  HUGE leap forward.

 

4)  She is writing more letters independently and drawing pictures with significantly less coercion. 

 

5)  When she is "writing" letters to people, she is addressing them with people's names...and the first letter is correct, 80% of the time!!  Also her "E"s only have 3 horizontal lines over 60% of the time, unlike her previous "if 3 is good, 9 would be brilliant" rational.

 

6)  She is attempting to communicate whole ideas, experiences, and desires.  I grant you, her speech is garbled at best, and it is still very elementary, but she is striking out past 2 word phrases.  I would like to credit her speech therapists with using her interests in speech therapy instead of sticking to "speech therapy protocol" and thinking outside Dolch words.  Pam and Kathleen, y'all ROCK!!

 

7)  I have started having my girls pick out clothes the night before and put them on the floor laid out like people.  She know what she needs to make a "school person", even if she cannot lay it out smoothly...AND she sticks to the decision in the morning.  BOTH huge leaps!!!

 

8)  She mostly takes her meds without spitting them out.  I say mostly, because there are still some rather sticky days, but she is getting waaaay better!!

 

9)  She is all about negotiations.  Now.  This is driving me bat crazy right now...but it is seriously high level thinking.  She is always arguing with me, that "Daddy say 'YES'!"  (Usually I also get the full body attitude wiggle with it!)  When both of us know, that a) it isn't so and b) he was not around to be asked.  But she is ALL her daddy's girl in the world of negotiations.  She will find every loop hole in a phrase.  She will put up insane options and then back them down to ludicrous, hoping that I will fall for the bait-and-switch as proportionally reasonable. 

 

10)  She is requesting hugs and kisses.  Again, I realize this is not huge to most kids, but for Elise, she used to stand and grunt with her hands out.  Now she demands "Kiss me, please!"  and "Need hug, please!"  And I always comply, even as she invades my personal space and I can't cook for her standing one millimeter outside of my skin.  Because, really, who couldn't use more love?

 

 

 

 



Milestones...

Elise has a surprise milestone...a sleepover...

We've had friends over in batches, you know, a family with multiple kids all sleeping together in sleeping bags on the floor?

But she's never had a invitation to sleep at a friend's house...until tonight...now, I grant you it's still in the planning stages...but it's a possibility that'd I'd not even thought about for a while...because it's sad to dwell on.

Elise's best buddy at school is having jealousy pangs of her typical brother...and has been begging her mother to let her have a friend sleep over, too.  And so, awesome mama that she is, she messaged me and invited Elise over...and me, too...girls' night.  And so we get the best of both worlds, we provide our girls with the desires of their hearts...and we get to hang out and have support mama time, which is bonus.

And it all boils down to this...The milestones that you weren't expecting, they are the sweetest.

Dancin'

We spent the first 5 years of Elise's life praying that she would gain weight and get ON the stinkin' charts...and now, we are a little concerned about her activity level and snack intakes.  The doctors are not concerned yet.  They assure me that she is still in the healthy range, but she is certainly edging up to the top of the bracket.  She is still growing up and they aren't worried about her increase in weight.

I am not concerned for now.  I am concerned about the habits that are being formed.  I am pushing the high protein  snacks, getting away from the highly processed carbohydrates.  I am trying to get her into the habit of exercise now, so if and when she needs to, it will not be a foreign torture. 

This has been difficult.  She is not terribly coordinated.  She does not follow rules well enough to jump into typical peer sports.  She can run, and run she does in Target and down the halls at school...on the road in our neighborhood?  Not so much.  So I've been trying to figure out how to up the energy output.

Our golden fall-back, is actually a sensory discovery.  She LOVES the input that she gets bouncing on the trampoline.  She'll jump just like a crazy thing for quite a while.  So that's what we are doing here at home.  But she needs more...like the rest of us, one thing gets boring after a while. 

I've considered joining a pool, as a family, just for her...but they none of them are close by...

Today I stumbled on a surpise.  I turned waaay up the tunes on my phone while I was cooking...and Charlotte was lured in like a moth to a flame...and we commenced to jump around like crazy people.  And Elise was lured in by the crazy that was going down.  And she joined us in the jumping around like crazy people.  For 45 minutes.  No lie.  Really?  I've been worrying for 6 months?  And it's under my nose and FREE and IN MY HOUSE!?!?!?

Cool.

Tomorrow I have a date with iTunes.  I'll be uploading all of the songs that Elise particularly loves from all her movies...and Voila!!  We have a workout!!!! 

I'll let you know how it goes....