31 for 21: Wall-E

 

As I've said before, Elise is ALL about movies...and as she is very low verbally, I am always intrigued with the ones she picks as her favorites.  I may perhaps overthink things, but I think you can always figure on deeper connections than kids can say...

Wall-E is another one of her favorites.  I have to say, it's on my short list, too. 

There is VERY little dialogue in it...I'd say better than 75% of it is based on beeps and body language.  And yet, it is rich in story.  Deeper than many.

The short version of Wall-E is this:  Wall-E is a janitorial robot that had been left on Earth after humans basically trashed it and left, planning to return when life retakes it.  Wall-E's job it to smush trash into squares and store it neatly.  He is alone.  No explanation for how he is the last one left.  My own theory, is that he allows himself to be intrigued by life, and therefore continues to live fully.  He collects trash that is interesting to him, and  sorts and stores it.  He is obsessed with a musical number from "Hello, Dolly", and has a best friend, a cockroach, whom he feeds Twinkies.

 

The ship that left Earth with the survivors sends out reconnaissance robots to look for plant life.  The reconnaissance robot that lands on Earth is a very feminine robot named EVE. Wall-E falls in love with her.  He woos her, and offers her a plant he found, she goes into sleep mode, as she found her goal, to wait for the ship to reclaim her.  He watches over her and follows her on board the ship.  And ultimately inspires the captain and ship to return to Earth to start over.

 

 

Why do I think Elise loves this movie?  I believe that it has very poignant tones of her own life.

 

 

Elise LOVES to sort.  She LOVES to watch bits of movies over and over.  She seeks relationship bonds and forms very strong connections to people.  She is unshakable, once she is committed to an idea or person.  She is enchanted with simple things.  She is inspiring with her passion for life.

 

 

Wall-E is a commonplace robot, with a monotonous life, with a tedious job, with no aspirations of grand things.  BUT he lives his life with gusto and a fullness of pleasure in the magic of day to day.  He discovers what is in the corners of life, and appreciates it.  This simple desire to enjoy and share joy with someone is the most basic of desires. 

 

 

 

I feel like we have muddied the waters a bit over the centuries...and instead of spending time building the most foundational parts of life, we look for the grandiose cloud castles, which are not only not filling, but unsubstantial and disappointing.  The fluff leaves us soft and dissatisfied, and even malcontented.

 

 

Wall-E sacrifices himself for EVE, who in turn, dives in to rescue him. 

 

 

The ultimate of achievable fairy tales, don't you think?  To love past yourself so much that you inspire?  When you jump out of your comfort zone and are willing to persevere in the monotonous, your castles will be built on a solidity that cannot be shaken.

 

 

I think Elise sees the grand in the simple, and her love of Wall-E somehow illustrates that.  And, it is her love for the plain, that beautifies the life around her and touches those in her circle. 

 

 

As Mother Teresa said:  “The greatest disease in the West today is not TB or leprosy; it is being unwanted, unloved, and uncared for. We can cure physical diseases with medicine, but the only cure for loneliness, despair, and hopelessness is love. There are many in the world who are dying for a piece of bread but there are many more dying for a little love. The poverty in the West is a different kind of poverty -- it is not only a poverty of loneliness but also of spirituality. There's a hunger for love, as there is a hunger for God.”  

 

 

This is why I feel the impact of those with disabilities can be so great, and why they achieve a somewhat undeserved status as "saints" and "angels"...They help us see what is important and filter what is real in life.  And that is why it is so imperative that we help them achieve their dreams and live their lives to their fullest, no matter what that be.

 

 

 

 

The stars are after all, touchable, when you are shooting for the heavens.

 

 

 

 



31 for 21: Speaking of Stalking

I love Gary.  I mean, LOVE her. 

She has an amazing blog about her daughter who has Down Syndrome.  Alex has brought joy and hope to me for my Elise on a "post-ly" basis...I would say daily, but sometimes I go check and see if there is a new post, and *SNIFF* there isn't one...

The Ordinary Life of an Extraordinary Girl

The blog does, happily, have its own Facebook page, on which Gary relates conversations she has with Alex that are pithy and awesome, that haven't made it to the blog for one reason or another:  https://www.facebook.com/pages/The-Ordinary-Life-of-an-Extraordinary-Girl/165047126851472

Also, she wrote a book that I have bragged on before HERE, that you can purchase HERE.

Today, I want to send you to this post in particular:
http://www.theextraordinarygirl.com/2013/08/why-college.html

This has been my favorite post in a while, because it speaks to what we ALL want for our kids, and addresses a prejudice that limits so many kids' futures, when in fact, you *can* give your child the world by opening a door to their possibilities!!

31 for 21: Adding to your reading list

This is not a book on Down Syndrome...really at all...exactly.

But it is the story of the inner workings of a child's mind, trapped behind the inability to communicate...and even the inability to frame the ideas in his own mind...

And his imaginary friend, who sees the inner workings, and explains them...

I have cried more over this book...I know that makes it a HUGE sell, right?  But it is brilliant and poignant and striking and insightful and truthful...

I literally cannot recommend it enough!!  I am thankful to "Angel The Alien" who follows and comments on this blog for recommending it on her blog...

(PSA:  I do stalk you *nicely of course*, by the way, when you comment on my blog *hint, Hint, HINT* to find out why you are here and maybe what you need/want/hope to see...I am not ego-centric, I really am writing TO you and I always genuinely love to hear from you...even when you write things I don't agree with or controversial things, it gets mixed into the cauldron of my thoughts that are always bubbling and simmering and I invite seasoning...)

http://www.amazon.com/Memoirs-Imaginary-Friend-A-Novel/dp/1250031850/ref=sr_1_1?ie=UTF8&qid=1380894303&sr=8-1&keywords=memoirs+of+an+imaginary+friend

31 for 21: Parenting Complexities...

Forgive me if today's post is a collage of links...but I see no reason to reinvent the wheel...I am more than happy to nod to others' moments of brilliance and the richness of their stories...It's not because I have nothing to say, as much as it is a demonstration of something, so stay with me:

I actually started this blog to offer yet another perspective on parenting that, at the time, I felt was somewhat unique.  And the truth is, parenting is always a unique perspective, knit into a few key truths...

Here was my original jumping off place:
http://tiffanyselephants.blogspot.com/2010/02/truth-of-parenting.html

A friend posted this link (not hers) and asked for thoughts yesterday:
http://downsyndromeuprising.blogspot.ca/2013/07/picking-rocks.html?m=1

I feel like this is one of those posts where every single option is the "wrong one"...and yet they all have validity as the "right one", too!  As I have said (HERE and HERE) I am wrestling with the fact that at some point you have to quit over-thinking and live your life and parent as best you can...for your particular child, typical AND non.  Another friend called the Picking Rocks post a "painful read," and I would absolutely concur.  I feel that there is certainly as much, I would even  go so far as to say more, judgement in the special needs parenting arena as there is in pregnancy or "typical" parenting.  But just as in the same manner, there are 30-eleven ways to do it *right*.  The judgement comes thick and fast, stemming, from I believe, an innate just-shy-of-the-surface panic that you ARE failing your kid, because you feel every square inch of being human and being *not perfect*. 

As a parent, you have to make the parenting calls you can live with.  You have to do your homework, but your life holds a grouping of unique factors that can never fit into a blanket generic fix.  These unique factors are called PEOPLE.  The parents are people.  The children you are seeking to raise are people.  The community in which you are located are people.  The teachers and peers in your child's impact circles are people.  And as people, they all leave their own mark, have their own stories and failings, and have their own needs. 

Consider this post that a friend is wrestling with:
http://gardenofeagan.blogspot.com/2013/10/is-it-really-inclusion.html

And this heart-wrenching and yet, terribly honest and dare I say common perspective?  (In the feelings and the paths they can so very easily take)
http://www.nopointsforstyle.com/2013/10/issy-and-kelli-stapleton-murder-suicide-and-family.html/

And, while I'm at it, let's bring in the ever popular/infamous proverb:  "It takes a village to raise a child."  I'm not going to debate it, I am just going to say there is a lot more to parenting than a recipe to the perfect kid.  There are more flow charts and scaffoldings of ideas and consequences in raising a child than a library can hold.  BECAUSE THERE IS NO ONE WAY.

Parenting is a hard job.  You have your own baggage and your own hopes.  You have your child's strengths and weaknesses, abilities and inabilities.  You have hope and desperation. 

Ultimately, you have a child that you love, that you need to raise...and you have to do the best you can...and pray that it's enough for that precious life you would give yours for.

31 for 21: Things You Don't Know #3

Things You Didn't Know #3

Did you know that you can love things for the possibilities?

I mean, we all know that lots of women get involved with men for their "potential"  (for the record this is a load of hooey, don't do it!!)...Jerry Maguire, anybody?

Skip to right at 1:00

So, anyhow...

Elise loves books.  She will still look at books, CHAPTER books, mind you, with no pictures...and stare at the words...and flip gently through them...and pet them, for the promise that the words hold....  For the stories that she knows they stand for.

 

 

 

Ever since Gabriel was a toddler, we have gotten Lego catalogues.  I grew up with Legos almost as closely as I did books.  So as soon as I had kids, I was on their mailing list.

 

 

About a year ago, Elise started begging for Legos.  I bought a set and she tried to put it together and it was an exercise in frustration.  I tried to encourage her to use Duplos, and she was completely insulted...and so I put it in a baggie in my pantry. 

 

My husband found it this weekend as he was (what we affectionately call) "rage cleaning"...this happens occasionally, as I tend to visually clean...as in, I clean what I can see...and periodically, he finds a stash of "cleaned" stuff and he *ahem* takes it out for me to sort and do away with...

 

BUT I digress...

 

The Legos were found...and Charlotte got at them first...she tried SO hard to follow the directions, but ended up getting out her beloved Duplos...  When Elise found them, she was ecstatic...and promptly pored over them for about 45 minutes.  And built something.

 

 

 

THIS IS AMAZING.  The fine motor skills that she has been fighting for for the last 10 years?  Finally paid off for something that she WANTED.

 

The Legos are also little bricks of possibility.  Just like words.  They can be made into ANYTHING.  They don't need to talk.  Their actual goal is not "play", their goal IS the set up...  Really, they are her perfect toy!!!

 



31 for 21: Things You Don't Know #2

Things you don't know challenge #2:  Elise doesn't know how to play.

I know, right?  How is that possible?  She has the mindset of a toddler, she should be DROWNING in play and creativity....

I have chatted with several moms to older kids with Down Syndrome and this has come up several times, and it is not isolated to Elise...either they never really figured it out, or it was something that actually had to be taught, unlike with typical kids.

I question if it is one of those "loose wires"?  Like not necessarily hand-in-glove with DS, but perhaps a fragile connection that may or may not be made thanks to inherent connection delicacy? 

On one hand, she has no conversation skills.  So it would make some sense that her toys don't converse.  Many boys never acquire that skill, so perhaps that shouldn't be an indicator?  I don't know, I am torn, I suppose.  But she never tells her babies they are in trouble, or their day's schedule, or has any kind of discussion with them or amongst them.  They make no sound effects.  The cows don't "moo", the horses don't "neigh", her cats don't "meow"... nothing.  It is silent.

She loves to set up for play.  She will set up her dolls for a tea parties.  She will change everyone's clothes for an outing that will never happen.  She will line up coliseums of animals for her viewing pleasure.  She will set up family herds of plastic animals.  She will seat plushies for movie voting clout.  But it will abruptly halt at the point of preparation.

Elise is ALL about sorting.  All the brown puppies in one group, all the elephants in another, the furry ponies in yet another....  She will spend quite a while doing this and then drag you in to witness the brilliance and crow with pride:  "They MATCH!"

Rules may or may not apply.  She is either the Gestapo about the rules or completely disregards them, with no real prediction for why and when.  This applies to tag, board games, computer games, and spontaneous verbal car games.

Sometimes I wonder if her ability to make friends would improve (with or without verbal capability) if she could figure out how to play....as that seems to be the most common glue in childhood...

And we are missing it...

31 for 21: Things You Don't Know Challenge

One of my best friends said that I "had to do at least one post that includes facts about Down Syndrome that we were more than likely not aware of"...

Challenge accepted. 

You can Google the features, medical issues, and disabilities that are par for the course with Down Syndrome.  If I run out of ideas, I will do those...in the meantime:

Things that you don't think of when you think of Down Syndrome:

#1  Elise is a technology junkie.

Like my uncle who was always on the cutting edge cannot hold a candle to Elise, sorry, Mike!  :)

She can open anything, freeze anything, lock you out of anything, play any game, win more than you should, and by-pass controls that you shouldn't be able to.

Rather than learn how to use her talkbox from the basics, she prefers to lock it up so that I have to call the company and find out how to unlock it...every single time she touches it.

She played Amelia's KindleFire for 10 minutes last night.  When Amelia got it back her first words were, "Hey, Elise!  You bought me a new background and the kitty I wanted!!  Thanks!"

Amazon's Customer Service number is in my contacts in my phone.  Why??  Because Elise has changed the language settings on her KindleFire, the security password, the Parental Controls password, the fonts, the Cloud password, and locked us out of it completely.

She has done much of the same on our computer. 

She can upload photos from a camera to a computer.

She can change wallpapers.  Screen savers.  Icon placement.

She has been known to get from PBSkids.com to Shopzilla and save a host of her favorite items to a cart.

She cannot spell folks.  She doesn't know her middle name.  She doesn't know her phone number.  She can read like a 4th week kindergartner.

THIS DOES NOT MAKE SENSE.

I am reminded of a quote by Ed Foreman, I heard as a kid, "Because of the size and weight in comparison to it's itty bitty wingspan, the bumblebee cannot fly.  But the bumblebee doesn't know that, so it goes ahead and flies anyway."

Bumblebee, thy name is Elise.