Impairment? I think NOT

Do NOT tell me Elise isn't a dad-gum Evil Genius!!!!!! Mental impairment, my FOOT.

She has, yet again, made brilliant use of staging a scene of terror for best impact on her sisters' psyche.

She put this horror-inducing fellow, that she stole out of Gabriel's old toy box, snuggled up to one of Amelia's favorite dolls, angled to stare them down even in their favorite safety retreat, after discovery...and then just waited...for 4 hours.

Delayed gratification at its most evil...perhaps?

When I told her to put it away, she placed it on the stairs, so when her sisters came tearing down the stairs to tell their tale, they would be stymied, yet again.

I'd like those stupid test administrators to come here on a weekend and then tell me to my face. that she has no practical application skills. Hacks me off when they look pityingly at me "seeing strengths that are not there"...

They can Kiss My Fanny.

chicken: the nugget of truth

This morning something brought to mind one of my favorite interchanges with Elise.  If I've already told this one, bear with me.  It's still funny to me.

When Elise was about 6, Amelia was 2 and they were peers...Amelia was even a little bit ahead already.  And I was beginning to really feel the gap...

We are apparently in the chicken capital of the US.  (I just looked up state by state production.)  When agriculture started to recede, our local area was literally revolutionized by a chicken plant.  We have chicken farms everywhere and a plant on our downtown square.  And a sculpture of a man with a chicken and a basket of eggs on a government building steps. Seriously.

So, chicken trucks are a constant in life.

As a little bit of a back story, you need to know that chicken nuggets made up at least 50% of her diet at this point.  Between post chemo effects, sensory issues, and being a toddler developmentally, there just weren't a lot of options that she would eat.

As we drive into town one weekday, we pull up behind a chicken truck.  And Elise asks, "Whas dat?"

I tell her what she probably already can see, "It's chickens."

She gives me a perplexed look and asks,"Chickens?"

I say, "yes."

She gives me a truly odd look, and asks,"Chickens?!?!?!"

"Yep"

She squares off in my line of sight, and signs chicken.  And asks again, "Chicken??"

"Yes, Baby.  Chickens"

She squares off again, and signs eat.  And asks again, "Chicken??"

"Yes, Baby.  Chicken."

This look of horror overtakes her face.

She signs eat and chickens.  Back to back and looks at me.

I nod.

She leans back, looking like her mind was totally and completely blown.

I was amused, but didn't think too much of it, until supper.  Which included, you guessed it, chicken.

Elise comes hopping in when called to eat and sits down in her booster.  She happily asks, "Chicken?"

"Yes, Baby, we're having chicken and green beans for supper."

Her head snaps around and her eyes narrow.  "Chicken?  Truck?"

"Um.  Yes."

She looks at me, looks down at her plate, and eats with a thoughtfulness.

The next week, we pull up behind another chicken truck.  And Elise pops up into attention, "Chicken?"

"Uh-huh."

She pumps her fist in the air, "Chicken!!!!  Eat!!!!"

Perry and Elise

Much of the world sees Elise as impossible to separate from her disabilities.  Sweet but not able to do much.  Like Perry,

"Well, he is a platypus. They don't do much."

―Phineas Flynn^[src]

I see Elise's brain-numbing speed at getting exactly what she wants with almost nothing able to stop her.  Dynamic in the fullest sense.

"In your letters, you described your nemesis as a 'suave, semi-aquatic personification of unstoppable dynamic fury'."

―Dr. Gevaarlijk to Heinz Doofenshmirtz, referring to Perry.^[src]

"[He is] fierce, cunning, and good with a grappling hook..."

―Heinz Doofenshmirtz, referring to Perry.^[src]

 

A "Fighter"

If you ask anyone...who has a loved one with Downs or not...they will have a stereotype to give of kids or people, for that matter with Down Syndrome.

I get the "loving", "sweet", "angels"...answers all the time.  Yesterday I do believe that I got the most honest answer and possibly the most accurate stereotype.

Elise's new Speech Therapist and I were chatting about possible factors/tendencies that may be affecting Elise's speech, and she made the comment, "Well, she is very much like all the folks with Down Syndrome I've ever worked with, in that she is *Very Stubborn*."  We laughed, because that is certainly probably Elise's over-riding trait...and I started thinking over all the kids that I have read about in blogs, the kids that I have met, and adults that I have had contact with, and started wondering if that isn't the most accurate?  Whether they rely on passive aggressive tricks, full on mule, or shouting...I've not met a single person with Down Syndrome that doesn't have that trick up their sleeve....

Now, lest you start getting defensive...I have a theory to go along with this...it is NOT a criticism.  I believe that our kids are fighters.  I believe that they can go far because they are willing to fight for themselves.  Whether they are demonstraters or whether they are recluses, they are willing to take steps to protect themselves.  They have extra challenges, but given the proper tools, I also believe that they could maybe have the most hardwired opportunity for success.

I have laughed about the fact that we gave Elise my middle name, Nicole.  It means "victory over the people."  We have teased that perhaps she takes that a little too seriously, and claims that as her prophecy...  But maybe, just maybe, we accidentally got it right???

How about you weigh in...is this a true call for your loved ones?

31 for 21: #30 The 21 Snapshot

Last year, I stole an idea from a friend and I'm revisiting it again this year...I was too tired to think last night, so I'm putting up two posts today to make up for it! 

Last year my friend over at Sunflower Stories posted 21 facts about her boy...and has for several years...and I loved it so much I decided to do the same every year, whether or not I did the 31 for 21 again!!

HERE is last year's!

And for this year:

1)  Elise is in love with wolves and pigs again this year....but we've added a total obsession with horses, too!

2)  Her favorite movies and shows this year are:  Shrek, Wall-E, Up, Shaun the Sheep, Wallace and Gromit, Mr. Bean, iCarly, and anything involving Christmas...bizarrely enough, it seems her favorites are heavily weighted to shows that rely on physical expression rather than dialogue...

3)  We have seriously cut into her cracker habit...but she still lives for crackers and popcorn...

4)  She likes to wad herself up and sleep in a ball...

5)  She still loves to have her Care Bears all lined up...but she now will shake things up and make her bears or elephant wear Build-a-Bear t-shirts...Believe it or not, this is a serious growth and maturity indicator!  :)

6)  This year, we decided to play on her techie super abilities, and utilize all the apps that are working communication miracles, and ask for donations from her grandparents and a Kindle Fire was ordered for her birthday...  I would totally tell you what I think of it, but it doesn't come out until middle of November...so, I'll keep you updated!  ;)

7)  Elise is playing more independently more often.  Her American Girl, Kit, gets to have some serious adventures.  She loves to play with her plastic animal horde.  They have families, friends, and actually have conversations now!  She really is growing!

8)  She can read simple sentences on her own.  Her independence is growing with her vocabulary.

9)  With her growing ability to read on her own, she still enjoys to "read" books without pictures.  She pores over them, enchanted with the idea of words and their potential.

10)  Elise has enjoyed listening to the dramatized audio books this year.  This is HUGE people!  She is "getting" the story behind independent words, with no animation or pictures.

11)  This year Elise can actually ENJOY the pool!!  She spent the entire summer enjoying swimming!!!  Well, paddling around with her life-jacket...but for the past 8 years we've had nothing but screaming and wailing...so this new found actual enjoyment of the pool??  SO AWESOME!!!!

12)  She still despises to have her hair brushed.

13)  *See #11*  While she would still adore to never have her hair washed, she is willing to take a bath nowadays!!!  Hoorah!!

14)  She still loves to cook.  LOVES to cook.  With some of the diet changes, we have been successful in finding some food that she will eat other than pizza and crackers.  Can you BELIEVE she likes CURRY???   She enjoys to make rice bowls and is branching out to eat veggies if they are mixed into stuff.  She happily makes and eats pot pies, too.

15)  Second only to any pizza joint, Elise's favorite restaurant is Tin Drum.  (Which is Thai food!) 

16)  For as little as she can communicate verbally, she gets really tickled over some pretty complex humor...

17)  Elise will actually color in a coloring book!!  This is a pretty substantial growth!!  I'm excited about the independence and getting to see her imagination in color!!

18)  She will still do her angry goose step, if she is not pleased about something.  Lately, she is adding a head tilt with a little lizard tongue spit to her repertoire, to express her displeasure, in a more mature display of anger.  (Ha!  Seriously, it is a much more restrained expression this year!!)

19)  *See #18*  Maybe we'll get words next year to lip off over things she is angry about.  I cannot believe this is something I'm praying for...so weird.  Right now we are on the cusp as we occasionally will get a sound effect!  ;)

20)  She still pets our faces when she cuddles with us.  She pets her Care Bears when she snuggles them.  She is still very dependent on sensory input to calm herself.

21)  She still sucks her thumb as her drug of choice when she is tired or stressed...  But thankfully this year she has learned to wipe off her thumb before she touches others.  :)

My girlie is growing up!!!  Love her!!!

Chicken or the Egg

Last Sunday was Easter. It was the most AMAZING weather, with what has happened in the last 24 hours, makes it feel like forever ago. BUT, I need to share this before I forget!

We had planned to get to the early service, which we missed getting out the door on time by about 10 minutes...and for Easter, that is just so not acceptable. So we got to continue our 3 year streak of watching Narnia...We got to the second service to enjoy church together. At it's conclusion we ran up to Tennessee to join our families for lunch and an Easter egg hunt...and just general family time...

The fun story that I simply MUST share is on the egg hunt. Elise likes the idea of the egg hunt, but she is not as fast as her sister or cousins in seeing the eggs or getting to the eggs...so her egg stash looked more like her two year old sister, than the brimming baskets of the rest of the hunters...fortunately, she enjoys it so much, she spent half the time admiring the eggs she had already found. She did eventually notice that she didn't have as many as the others so she started looking harder in areas that had already been scraped clean...finally, she went up to my in-laws storage shed and pointed...I said "What? I don't think there are any eggs there..." She insisted, "Chickens!!" What? More insistantly, "Chickens!! Eggs!!" OH!!!! "You think there are chickens in the shed?" "Yes!! Eggs!!" "And you think they have more eggs?" "YES!!"

So, stratch this whole hunting the eggs thing...let's go straight to the source!!! You gotta admire that kind of proactive decision!! :)

31 for 21: #16 Pumpkins and Birthdays

We were carving pumpkins tonight which brought to mind one of my favorite Elise moments...

Elise's birthday is at the end of October, but before Halloween. A couple of years ago, Elise enjoyed singing "Happy Birthday" and blowing out candles so much she took it on the road.

When we went Trick-or-Treating, she took the opportunity to sing "Happy Birthday" to herself and blow out eveybody's Jack-O-Lanterns....EVERY SINGLE ONE in the neighborhood!

Really!!! HAHAHAHA! Tell me you don't LOVE that!!!! :)

31 for 21: #11 Do What?

Okay, you know how sometimes you look at someone, and see their lips moving, and understand that you are speaking their language, but cannot comprehend what they are saying? And it is only later that the pieces fall together and you get it? And you realize that apparently you were having two different conversations...that somehow, there was a HUGE miscommunication...And you are thankful that you didn't quite understand, because you would have fallen over laughing?

That happened to me when I was pregnant with Amelia, my third. Elise was 3 and 1/2. And I had gone with my husband to his friend's birthday party. At this party I met several local politicians and their wives. I really enjoyed talking to one of the wives, she was very well-spoken, smart, and generally likeable...and we got to talking about my very obvious pregnancy and how many kids we had, and so on. It soon came up how my older kids were feeling about another sibling...Gabriel of course was excited, even though it was a girl...and I said that my daughter didn't really "get it" and she had special needs, so we weren't sure how she was going to handle being a big sister...and this sweet woman got very worked up about how I needed to take care of those special needs and that a pedicure with just us girls was just the ticket...and that I could make a monthly date to get a mini mani-pedi and that all those special needs would be met and she would be fine...WHAaaa? I was struggling to follow this conversation. I kept nodding and smiling and it wasn't til later that I realized that she thought that Middle Child Syndrome was the special needs that we were talking about!

The more I thought about it, the funnier this got...the idea that we could fix Down Syndrome with a well-timed mani-pedi tickled me to no end...It still gives me the giggles!

Well, I've tried it. And while Elise still has Down Syndrome, her tiny toes sparkle happily with paint...and we never had issues with Middle Child Syndrome! So maybe that lovely lady knew what she was talking about after all! :)

31 for 21: #6 Scoop Poop

This is my funny Elise story for the week...because it is fun and needs to be giggled over.

Elise has hippotherapy every Wednesday. And has since she turned 3. Hippotherapy is therapy that you have on horses.

Elise has had one form or another of therapy every single week since she was a month old. Some for intervention to fix something, some to prevent something...feeding, speech, sensory defensiveness, strength, coordination, fine motor, gross motor, and so on, and so on....therapists have come and gone...but one has been with us for 5 years...Nolina.

Nolina first came with Gus. As a matter of fact, we still call hippotherapy "Going to See Gus"...Gus was a giant horse. He was 18 hands, minimum. This means his shoulder was about as tall as mine...and I am not a little woman...I'm 5'8". If you don't know what "hands" measure, they only measure to the horse's shoulder, then their neck and head are taller yet...He was a giant horse!! And Elise was only 3 and maybe 25-30 lbs...she looked like a tiny doll perched up there! But as afraid as she was of tiny pocket dogs, she loved Gus and would do anything for him...things that therapists had been begging her to do for 3 years! Nolina knew how to milk the Gus aspect, "Oh, Elise, Gus wants you to try...Gus would be so sad if you pitch a fit...Elise! Good job! Gus is SO happy and proud!!"

Gus got old and therapy got to be asking too much and he got sold to some folks that just wanted horses to wander their fields...the perfect job! The reward for carrying squirrly kids for years!

Then we met Ace. Ace totally gets Elise and seems to enjoy her as much as she enjoys him. A mutual admiration club. He is not as big but is still not even close to a pony...and now that Elise is bigger, she gets to curry him out before the pad gets put on him....and lead him to the mounting ramp. She enjoys this more than therapy, even.

Occasionally, Elise will buck and refuse to do the therapy activities. There are usually promises of rewards and of consequences. One consequence that was used on a little girl in the slot before Elise took ONE day to take. She was required to muck out a stall. It has never come to that again. The mere suggestion that her behavior may come to that and she pops to attention. So one day Elise had "A DAY" and Nolina required her to muck a stall and she LOVED IT! She thought it was such fun!!! She mucked out one, and then went to the next, and then the next...soon she was shopping with the wheel barrow all over the barn hunting "Poop" to scoop with the shovel! It became painfully clear that it was not having the same effect as on her friend! SO! Now it is her reward for making better choices! "Elise, if you are good and work hard, you can scoop poop!"

So, on a great day Elise will skip out of hippotherapy trilling that she got "to Scoop Poop!" and grinning with joy!

Elise's American Girl doll, Kit, has a helmet and a horse and she gets therapy too. The thing that cracked me up a few weeks ago, was that I overheard Elise telling Kit to be "good" and she would get to "scoop poop!" It was awesome! :)

Hippotherapy has been a God-send for Elise. She works SO hard for her horse. It has had a miraculous impact on her sensory issues! It has strengthened her physically, and improved her work ethic and attention span. She loves it and I cannot say enough good things!

But who's to say that "scooping poop" hasn't had it's own impact? If you have a barn that needs cleaning, give us a call!!! I know a girl who'd be your best friend forever...

31 for 21: #3 Oh, NO!

When Elise was 2 ish, we had already had failure to thrive, cardiac failure, open heart surgery, thrombocytopenia, AML (leukemia), and had "wonky" thyroid issues...we were getting jumpy.

And then IT started happening! Suddenly, Elise's beautiful eyes would start to glaze over a little, and she would put her arms over her head and start to sway like a dandelion in the breeze.

Oh, NO! She's having seizures! She has started regressing! She has autism! The chemo is attacking her brain! THE FEAR !!!! ANYTHING started sounding possible after the previous 2 years...

And then I took it down a couple of notches from crazy and realized that she was not having neurological issues...and maybe she was watching something...and maybe that something was her shadow...

That was the beginning of Shadow Baby. Elise adored to dance and play with Shadow Baby...the dances and celebrations!!! Oh, it was SUCH a party!

I miss Shadow Baby! She was such a polite and clean friend...she never pitched fits and was so quiet!

Shadow Baby has grown a great deal over the last 6 years! And she does come over and play in the yard with us some sunshine-y days! I believe that she will be a very faithful friend for years to come!