The Act of True Love

Okay, so there was that weird blog rant of that lady about Frozen?  (I don't really want to give her traffic, but if you google "Frozen Mormon Gay", you should pull it up or at least a link that addresses it.)  That post saddened and perplexed me...and I replied to someone that using the argument she did, then you could argue Frozen was a symbol of learning disabilities, Autism, and pretty much anything that separates us from those we love and live with.

And so I have assigned myself to address the idea that literally hit AS I watched the movie "Frozen" the first time and has continued to haunt me as I have watched it a billion times with my kids...

I am totally reaching, here, and I know it, but I'd love for you to feel the parallels between Frozen and those who live with profound disabilities:

First of all, as the girls grow up together...Anna thinks absolutely nothing of Elsa's "powers".  As children, Anna loves Elsa and accepts her, and uses her unique abilities to increase their fun and their relationship.  They are not separated by their differences at all.

When there was a misjudgement by little girls, the parents tried to protect them both by separating the girls, and pressing Elsa into the publicly acceptable mold.  Rather than becoming comfortable with the publicly safe version of herself, Elsa panicked, became afraid of herself and any relationship, and isolated herself, hurting herself and her sister deeply.

This isolation expanded to her family and any intimate circle she had.  Their life was completely cut off from everyone else.  The barriers made nothing easy.  It prevented not only Elsa from making friendships or relationships, but Anna as well.  And ultimately the lack of comfortable relationships drove Anna to mistake coincidences and parallels for compatibility and damaged her judgement of love.  (You could even take the "symbolism" as far as saying that the oppression of keeping her true self locked down, killed the relationship with her parents.)

When Elsa let her guard down and she "slipped" out of the carefully molded public persona that she had created, she felt relief and freedom with herself being open and honest.  She discovered that the "curse" that she had lived under for her whole life, was beautiful and unique.  It created beauty and originality.

Anna, in her love for her sister, followed her, believing that communication was all it would take to open the doors and have a relationship again.  Also, because she was also broken free from the emotional lockdown by her sister's freedom, Anna was able to begin to form healthy outside relationships again.  Those relationships broadened her wisdom and experience and offered yet more relationships to enter her life offering more wisdom...I will go so far as to say that the lyrics of "Fixer Upper" are possibly the healthiest view on love that Disney has ever set forth:

"We aren't saying you can change him
'Cause people don't really change
We're only saying that love's a force that's powerful and strange
People make bad choices if they're mad or scared or stressed
But throw a little love their way, and you'll bring out their best
True love brings out the best

Everyone's a bit of a fixer upper
That's what it's all about
Father, sister, brother
We need each other
To raise us up and round us out"

Ultimately, Elsa never was forced to beat her "oddities" into submission.  She did not have her kingdom taken away.  Instead, her sister saved the slowly freezing petrification of their sisterhood, by sacrificing her happiness and entire future for her sister, AS IS.  That love allowed Elsa rejoin her life and, in the movie's case, her kingdom.  She was able to use her experiences to be a beloved queen, without hiding her core, and that very core, became a source of magic, and enchantment even, among others.

The "sacrifice" turned out not to destroy Anna's life at all.  It began healing them all, the sisters, all they come into contact with, and even further circles reaching exponentially...

Now.  Instead of "crazy ice magic" put in Autism, Down Syndrome, giftedness, Asperger's, and any disabilities and unique perspectives....and see the ice melt away from some of even your potential friendships...

YOUR act of true brotherly or sisterly love to your family members, friends, or those in your path, could be the gesture that frees someone from fear and self loathing and oppression.

True love is so much more than romantic love on major card-giving holidays.

Think about it.

Puppy Power

Okay.  It's for real now.

We are stepping up for a dog for Elise.  We have decided on a Therapy Dog personality, teenager dog, and training him into a pal.  Her sisters and myself are looking forward to having a fluffy someone to take the constant loving and petting she wishes to bestow.

I have found the most marvelous breeder, who is listening and really hearing what we need to make this work.  She even read this blog in an effort to find the perfect match.  We are looking at 2 dogs.  One is a miniature poodle, and one is a 2nd generation Pomapoo.  I just put down the holding fee for the boy that I think will be the best fit.  I hope to meet both boys this week to confirm my gut feelings.  I am hesitant and on the fence about bringing Elise, because any kind of squirrely meetings tend to make her worry.  And it took 2 sessions for her to get comfortable with the dog at her therapy center, and I don't see her being an immediate bonder with any puppy...especially if she is not at home or somewhere she is not comfortable.  But I will see how she is feeling the day of, and if she is doing well, she will be the only one who will come so as to not overwhelm the puppies (or Elise).

His tag name is Smoke, but the breeder tries to use only nicknames and endearments, so they can be named officially at adoption. 

Elise is thinking about names....so far she is wavering between Shrek, Stitch, Bear, Bolt, and Waffle.

If I am wrong about personality, we may have Cole, instead.

All things going smoothly, and by that I mean, WEATHER ALLOWING, I will have one or the other of them by this weekend.

In the meantime we weather more snow...and by that I mean ICE.

Please pray over a smooth transition, and the perfect match!

Sensory Overloading and Feet

Once upon a time, Elise was working out.  Which right now involves one of two things:  "walking" our dog around on a lead in the Invisibly Fenced yard and jumping on the mini trampoline.

 

Well, the day called for jumping.  She desperately needed the proprioceptive input and so she jumped happily and willingly like a mad woman.  I was sitting on the couch next to her, because she liked the audience.

 

Well, this time she slipped a little, and got her foot entangled in the springs.  Shrieking like a banshee, she tugged on her leg to free her foot.  I lept up and dislodged her immediately.  Total time on this was less than a minute.

 

She asked for snuggles and kisses.  And she was healed and went on with her day.

 

The next day was also, perfectly fine.

 

The day after that, she complained that her foot hurt.

 

The day after that, she refused to bear weight or go up the stairs.

 

They day after that I took her to the pediatrician.

 

Who sent us to urgent care for an x-ray.

 

They sent us to an Orthopaedic Specialist.

 

Who sent us home with a boot because she had a BROKEN FOOT.  (broken metatarsal)



 



This caused a lion's share of distress.  She hates shoes.  She hates feeling "unsafe".  She hates not feeling "grounded".

This made the boot a test of her emotional and sensory fortitude.

The boot caused a HUMONGOUS amount of sensory overload.  She sucked a callous onto her thumb.  She pet anyone who sat near her.  She refused to move quickly.  She was an emotional basket case.  But, she showed a gigantic leap in maturity, as she realized that things could get worse if she fought the boot.

But she buckled down and suffered for 3.5 VERY LONG weeks.  Then we got iced in.  And she wore boots in the snow...until she got cold and then she ensconced herself on the sofa.

At the end of week 4, she was released from the boot at the follow up.

This was such a wonderful and joyful celebration, I didn't even remember that it was the anniversary of her open heart surgery.

I find it fitting that she was freed from her bodily limitations at both junctures...and on the same day...

And she is free to run again.  And so she has!!

The Magic Trike

Elise was the reason my 7 year old didn't learn to ride a bike until she was 6.  We had given up on bikes as a family experience.

We gave up on bikes around the time her weight went over the trailer limits...and our muscle's coping options...she is terrified of the insecure-ness of bikes.  She is petrified of even the exercise bikes upstairs.  I bought her one that I hoped she could use for exercise alone and to get her used to bikes in general, hoping we could eventually graduate to a *real* one.  It was seriously ugly.

I have been chatting with my local bike guy about building her a tricycle.  Like this:

We have spent several sessions where I realize something and go back to him to see if it is feasible and how much it would cost to make it work. 

We were talking a minimum of $500.  Probably more.

Because this is a rather large cost, we had opted to wait another year, until she was 12, as she will probably be within an inch of her final height.

2 weeks ago, I found a listing on a Facebook local yard sale group for a trike.  It looked so cool, and it's cost was less than half of the Amazon listing. 

http://www.amazon.com/Mobo-Ultimate-Wheeled-Cruiser-20-Inch/dp/B003VGFN7K/ref=sr_1_12?ie=UTF8&qid=1388091429&sr=8-12&keywords=moto+trike

I chatted with the seller and Ethan and I decided that it was such a cool option that had a HUGE possibility, and we decided it was worth the trial.

So I broke my neck, to get an hour across town to buy this bike, when I should have been getting ready for Christmas.

Elise is so hard to buy for.  I spent very little on her for her birthday, because it makes no sense to spend big for ceremony's sake, and I decided that if she discovered anything during the year that she got excited about, that I would make up for it then.

Because the Mobo Trike is about 6 inches off the ground, it's rather like a bike and a Big Wheel got married and had a baby.  Because of its low profile, it is significantly less wiggly and scary sensorily.

The handles are a little different, so there was a learning curve.  But she had ridden a trike with a similar driving mechanism when she was in pre-K.  It took about 3 minutes to talk her onto the bike, 5 minutes for the steering idea to make sense, 15 minutes for her to remember, another 10 to remember the hand-brake, and 15 minutes for her to not slam her feet down on the pavement and yell "Scary!!   Fast!!"  There will need to be another few sessions to remember you always have to peddle in the same direction, but all in all, it was pretty much a miracle.  Easy, fun, and almost a typical experience.

She did great, and I plan to take her to my church parking lot, and set her free sometime over Christmas Vacation.

Here are a few pictures for you to enjoy, a helmet will be added next time, but with all the sensory issues, and that she was unlikely to fall off, it wasn't as necessary for our start trip.  In 20 square feet of driveway.

And that, Ladies and Gents, was darn close to a Christmas Miracle!!!

I hope that your holidays and Christmas are lovely and full of good memories...and we'll check in again, soon!!!

Celebrity Crush

So Elise is eleven.

When I was eleven, I had my first celebrity crush.  Errol Flynn made my heart flutter.  I know, weird.  I'll take my geek points with pride, thanks...

Elise's best friend, Megan, is super in love with One Direction.  Like, that was her birthday party theme.  And she got pillows and purses with their teen heartthrob faces all over them...And her friends are attempting to raise $ to send her to a concert, to blow her sweet mind.  HERE, in case you want to spend the $5 of a Starbucks to make a little girl sparkle with joy...

I got to thinking today who Elise's first heartthrob would be.  Someone who makes her jump and scream?

Alvin.

She knows the words to all his songs.  She has him on her ipod.  She has a plush version of him that she kisses.  She doesn't miss his movies.  She loves him.

Totally sigh worthy, right??

'Course it doesn't hurt that he's as obsessed with Christmas as she is....

The Hissy Fit I Have Not Had

I am lightly hopped up on cold and flu medicine, so forgive the brutal honesty, the poor grammar and any bizarre spellings.

I have questioned the wisdom of posting this, but have decided that it is wiser than finishing my Holiday PSA post while in this questionably honest mindset.

(credit)

I had a dream last night where I had several people announce that they were pregnant.  For some reason, several of these were public and involved crowds of people milling about offering their congratulations and the blushing mama said all the usual things...and in two cases, I reverted back to my old self and went apoplectic and verbally dressed them completely down for one of their comments...

Now, these things have been said 639 billion times...and I tend to react the in one of three ways about one of the pat answers...

"I don't care if it is a boy or girl, I only want a healthy baby."

Now, I know my reactions are colored by my own experiences...and I used to not think anything about that simple sentence, but these are the things that now go through my head:

1)  I sometimes only have a flicker of annoyance.  Like an annoying fly.  I know that health is important and something to be desired...as a matter of fact, I know more than most, what an amazing gift a traditional, healthy birth is...but if everything doesn't go according to plan, you are still a parent and you will still fall madly in love with the tiny person that you are suddenly and abruptly in charge of and it is still good and a blessing.

2)  Occasionally, when a friend confesses to wanting a particular gender, I have been taken with an overwhelming hope that they don't get their desire...not because I don't want them to be happy, but because I think they may be missing out on the Real Happiness, blessing and general awesomeness of:
                          a)  not missing out on a particular gender
                          b)  getting the life that you didn't plan for

And, sometimes, I think that the lack of perfection or health falls under "b".

I have a LOT of friends with kids with varying forms of disabilities.  Some disabilities are frustrating, some are difficult, some are heartbreaking, some are almost more than they can bear.  But, I can assure you, that NOT ONE would give their kid back.  All of us would love to see our kids not struggle, and we certainly would love an easier path for ourselves.  But I have never spoken to a parent, that, if given a choice of their child with all their heinously glorious issues, or to never have them, would choose to have never had their child.

Everyone can speak to SOME blessing that they received in their path, no matter how difficult. 

3)  And every once and a while, I am taken with a mind-numbing black rage in which I feel their comment as a scorn against my baby.

(credit)

 

I am taken with the full on crazy obsession that my baby, no matter how far outside the norm, is the most delicious specimen of babyhood, toddler hood, childhood, or adolescence there ever there was....and sometimes, when I hear that off the cuff comment, I want to tear your throat out for even thinking that my precious isn't worth having...that you wouldn't want my baby, my life, my experience...   NOW, I know rationally, that even with a perfect child, you probably don't want my kid, BUT in my eyes, I love my child and I wouldn't trade them for ANY OTHER CHILD, ever.  And if the idea even flits through your mind that you won't think the same of your child, no matter the lack of perfection, that breaks my heart.

 

 

Consider that every child is the possibility of...everything...

 

 (credit)

 

 

And that's somehow always worth the price.



Hoarding

People with Down Syndrome have a significantly higher propensity to get Alzheimer's Disease.  "By age 40, a full 40 percent of people with Down syndrome will develop the disease, and by age 50 that rises to 50 percent, Skotko told TODAY’s Maria Shriver."  This terrifies me.  I mean, full on, make me sick, terrified.

I know a typical someone who has been showing signs of Alzheimer's...I was suspicious, and googled it...and my suspicions were certainly confirmed:

trouble handling money and paying bills

repeating questions

taking longer to complete normal daily tasks

poor judgment

losing things or misplacing them in odd places

rummaging and hoarding

mood and personality changes

increased memory loss and confusion

problems recognizing family and friends

inability to learn new things

difficulty carrying out tasks that involve multiple steps (such as getting dressed)

problems coping with new situations

hallucinations, delusions, and paranoia

impulsive behavior

Where it gets a little weird, is that Elise exhibits half of the things on this list on any given day.  So, frankly, it's not that much of a stretch to think that she will be susceptible to getting it.  Because I surround myself with people who are almost as blunt as myself, this sentence has been said, more than once:  "So, how will Elise having Alzheimer's be that different than now?"  Yeah.  That is part of my own personal terror torture...will I even know that she has Alzheimer's until she doesn't know me?

I hope that the medical community will choose to pursue the link between Down Syndrome and Alzheimer's Disease.  I don't like the idea of removing the third 21st chromosome (I'll save that one for another day)...but I have a lot of hope that in messing about with the links between Down Syndrome and Alzheimer's disease that they find ways of wiping the plaque and helping free the minds of those trapped...

Because trapped out of your own life is even more terrifying than watching it happen to a loved one.

Can you do anything to prevent Alzheimer's in yourself and your loved one that has a predisposition?  Actually, yes.

The six pillars of a brain-healthy lifestyle are:

1. Regular exercise
2. Healthy diet
3. Mental stimulation
4. Quality sleep
5. Stress management
6. An active social life

I fail to see how any of these are not something we should all be striving for anyway...and things this generation tends to allow many of these to slip regularly with flippant excuses....

Don't make excuses.  Implement changes.  Protect your body.  Protect your brain.  Protect your future.




Resources:

http://www.alz.org/alzheimers_disease_10_signs_of_alzheimers.asp

http://www.alz.org/stl/documents/hoardingrummaging.pdf

http://www.nbcnews.com/health/how-down-syndrome-may-help-unravel-alzheimers-puzzle-8C11084898

http://www.helpguide.org/elder/alzheimers_prevention_slowing_down_treatment.htm