Time and Tolerance

It is funny how today's post and today's anniversary kind of run together in my mind.  I'll let you decide if they really fit the way they do in my head...

Today I realized that people's tolerance is directly proportional with the time they have.

If you have plenty of time, it is easy to show acceptance.  If you are running late, you are more likely to fall into patterns of intolerance.

Last year, I  let the girls sleep in as late as I possibly could and still get to school on time.  We made it most days, but it was really touch and go.  There was not time to whine about breakfast or shoes or how they didn't want to go.  I admit to being very short if any of these items were brought up. 

This year, due to Gabriel's new school, he has to get up much earlier, and the girls get restless and get up with him.  I got alarm clocks because of particular requests, and they have proven to have a positive effect on all the kids.  So, we have plenty of time to change our minds about clothes, shoes, and what they want for breakfast...and we are getting to school much earlier.

Last year, I was brought to the threshold of crazy thanks to the unwillingness of some of school staff to open the door for the girls to get out.  Previous to last year, I dropped Elise off on the other side of the school from carline.  Her teacher or para-pro greeted her and got her out of the car and into school.  Last year, they  cracked down on this practice and made her come into school with everyone else.  Except I cannot leave the car door without a child-lock because Elise has attempted to open the car doors while the car was MOVING. So, this means none of my children can open the car doors without them being opened from the outside.  I am not *allowed* to open my car door in carline, although I have before...so that leaves the bus duty staff to do so.  They often do this for littler kids, so I'm not asking for anything unique.  BUT if you are running bang on time, and you have no wiggle room, anyone taking longer than it takes kids to fall out of the door; gets hand waving; flipped off; car lights flashing; and on occasion, horns beeped.  I usually ended up having to pull all the way through the entire carline, stopping even 2 or 3 times in a pass in front of a staff member that stood there like a boob and made no move to open our doors.  I ended up making an orange handicapped hang tag with "Student Needs Help" written on it, and emailing the school that fact...so it would signal help was necessary for the student to get out of the door.  There were several staff members that would still never raise their hand to open our door.  I even went to the principal after them turning a blind eye to me WAVING THEM OVER gesturing at the window tag...and I may have threatened crazy behavior at that point (a demanding sign with naughty words on it)...and the principal admitted to having the temptation of letting me go through with said crazy behavior, just to watch said staff members squirm...  I don't know what she said to them, but the two staff members that were especially a problem started opening the door with saccharine greetings that made me want to shake them til their teeth rattled.

This year, Elise's para-pro is on duty and is calling to the staff at our station to open our doors.  The infamous hang tag hasn't made an appearance, nor do I anticipate the naughty sign being a temptation.  But, more interestingly, I am not getting the waving of hands; flashing lights; or angry, revving engines.  At all.  I believe this is due in part that if you are not late, you aren't as willing to throw everyone else under the bus to avoid your kids being marked tardy.

Today is the 50th Anniversary of Martin Luther King, Jr.'s "I Have a Dream" speech.  I have spoken on more than one occasion that the disabled population is this generation's oppressed minority.  In addition, I have read recently, that stress is #1 health problem in the US, that stress contributes heavily to heart disease, obesity, and  substance abuse issues.  I have no trouble believing this.  And this I further believe that it contributes to continuing race tension, oppression of people with disabilities, the divorce rate, and even more stress itself.

Maybe we don't need more time passing to fix relational issues.  Maybe we need to pare down our lives, take out un-needed commitments, and add time to allow freedom of movement during our day.  Maybe if we weren't tearing around at 100 miles an hour, we'd have time to stop other people's intolerances, to allow more time for those who need it to process input from life, and to build relationships and friendships with our dear ones and friendships with people unlike us.  Maybe we need to take time to love each other?

Faffaws

Elise loves waffles.

LOVES waffles. 

Elise can make toaster waffles.

We have put a bicycle chain lock on the fridge and a key lock handle on the pantry.  Between Elise and Gabriel (my 14 year old son), we had no food all the time, 15 minutes after a grocery trip.  So we REALLY needed to have control on when food was eaten:  My son, because he is a starving 14 year old boy.  At 6 foot, he is a bottomless pit.  Elise, because she likes how food crunches in her teeth and doesn't have the sensory wherewithal to realize when she is full and she will eat until she is ill.

The tricky thing is that we are still getting used to locking them.

So this morning, I have all three girls in my bed with me...the next thing I know Elise comes prancing in my room, happily chowing down on a waffle sandwich:  2 waffles with peanut butter in between.  "Yook, I make faffaws aw by mysef!!"  (Look, I make waffles all by myself!)

As usual, I am massively proud of her independence and initiative.

Until I see that this is her second "faffaw samich"...thanks to the remains sprinkled about the kitchen...and realize, yet again, that this girl is faster than a striking snake.

I find myself thinking that parenting Elise in her low verbal state is rather like a unique forensics field...I walk around my life with limited information, scanning every scene without touching, figuring out the consequences of decisions, and the order in which they were made.

It's weird and interesting.  My life could never be described as boring.  I think I may still be making dendrites to store this new profession in.  Supposedly the more puzzles you solve, the stronger your brain gets...at this rate, I will never be senile...I may have ulcers, but my brain will be just fine.

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.

I like me for me

 

There is something in all of us that wants to be accepted, warts and all.  We don't want to have to change, to smooth off our rough spots, or to alter the core of ourselves to be "liked".

 

 

There has been a big campaign that has been seriously pushed: "more alike than different".  And while we bloggers tend to want to tell you how much we love our kids, sometimes, what ends up in the translation is only the sweet, beautiful,  and general awesome-ness of our kids and our lives.  Also, often the "people first language" is pushed to the crazy levels of excluding those who don't know about it from our lives.

 

I've tried to be truthful about the crummy parts of my life, as well as the good stuff, but I thought I'd be all blunt today...well, to be honest, I've been writing this post in my head for about a week.

 

Apparently, this hasn't just been rolling around in my head, Green Tea Ginger addressed it yesterday HERE.

 

Our kids are "more alike" because they too have bad days.  Our kids are more alike, because they are mean.  Our kids are more alike because they talk back, even if we are only discussing body language.  Our kids are more alike because they have massive strengths unique to themselves.  Our kids are more alike because they don't feel like doing homework or cleaning their room.  Our kids are more alike because they pick up all the family oddities.  Our kids are alike, in their uniqueness and their differences.

 

No two typical kids are alike.  No two special kids are alike.  No matter what disability we are discussing.

 

We don't love our kids because they are perfect angels.  We love them because they are our kids.  We are driven off the crazy deep end by our typical kids and we are driven off the crazy deep end by our special kids.  We will turn into a raging bear if you mess with our typical kids, and you've never seen a "Mama Bear" until you've seen a mother have to stand in the gap for a special kid.

 

 

I love the movie Penelope.

 

 

 

I was watching it for laundry folding entertainment and this quote hit me more potently than usual:

 

"'He didn't like your nose, that's what he

didn't like. You're not your nose.'

'But, it... it is my nose.'

'No! lt's your great, great,
great grandfather's nose.
On your father's side.
He did this to you... to us.
But you are not your nose.
You are not you.
You're, you're, you're...somebody else inside just
waiting to come out.'"

 

I found it rather poignant that we feel the need to argue that you are someone underneath your "big" oddities or disabilities.  Aren't we all ourselves under our differences?  Can we not claim our differences without inherently damaging our core?  We are worthy of love and acceptance before our disabilities or differences are "fixed".

 

I haven't read up on the actual science behind the ability to alter the T21 chromosome.  But I have a sneaking suspicion that part of the backlash is the offer of a "cure" before acceptance.  Still.  In the face of regulation and hate speech and all that...we still are offered a "cure" before our kids are allowed to be themselves...which brings up, what will be "fixed"?  What will be taken away?  Will a viable and important part of their inherent make up be taken?

 

On Brian Skotko's blog page, these statistics were shared:

"We mailed surveys to families around the country, and 3,150 mothers, fathers, brothers, sisters and people with Down syndrome responded. Here is just a sample of what we found.

• 99% of people with Down syndrome said they were happy with their lives
• 97% of people with Down syndrome liked who they are
• 99% of parents said they love their child with Down syndrome
• 5% of parents felt embarrassed by their child
• 97% of brothers/sisters, ages 9-11, said they love their sibling

*All of the surveys’ results have just been published in the American Journal of Medical Genetics."

About 10% of people in the US battle depression according to the CDC.  The highest level of "very happy" people measured by Nation Master in 50 nations was only 55%.

Do we really need to "cure" Down Syndrome?  Maybe we should be taking lessons in acceptance and peace and happiness.  They are not vegetables who don't know any better.  As a group, the abuse statistics are nauseatingly high amongst those with special needs.  Yet, they still have us beat with peace and happiness in a quantifiable comparison.

Maybe we are the ones that need the cure.

I highly recommend this movie.  I've you've seen it or don't want to, this is a TOTAL SPOILER clip, be warned.

 



That's Amore!

I've been struggling with a migraine for several days.  I have managed to beat it back to a functioning status up until last night...at which point I am cooking my head in lavender oil infused bath water, so hot I can barely stand it and considering cutting my hair off, a la Pedro in Napoleon Dynamite.

This morning I was forced to pull out the big guns.  Prescription medication.  This morning I'm laying with a pillow over my head, praying my meds will kick in so I can ship my kids to my parents' who are camping locally, when I hear Elise, "I did it myself, Amelia, help with the oven."

Wow. She made her own pizza. Like from scratch on a pita, with tomato sauce and cheese.

The good news? She's motivated and can be independent, whatever her status with snaps and hair brushes.

The bad news? She wants the oven on.

Dude.

Warning: the Zombie Apocalypse is Already Upon Us

Sometimes I don't think that the idea of the Zombie Apocalypse is that far fetched...because sometimes I don't think it's particularly external...

Sometimes I feel like my life circles have expanded into another world...like Grimm...that show suggests that all the fairy tale horrors are not made up, just that they are camouflaged and can only be seen by certain people...

Sometimes I feel like I should put up a warning sign for people...like "Don't be my friend, unless you are prepared to hear requests for prayers for friends or hear about the dark side of parenting..."

Sometimes I feel like every time I turn around I remember that there are too many children that have been lost to disease, too many kids are fighting tooth and nail for life, too many memories that have never been made, too many families that are trying desperately for "mostly normal" status...

I weep regularly for other people because I have either been there, personally, parentally, or on the cusp of...

Sometimes I feel half-dying, torn, broken, raw, too broken for words...and sadly, I know that I am not alone in feeling this...

I wonder sometimes if it is a casualty of being in the special needs community, if it really has been that rampant my whole life and I just didn't know, or if it is something that is coming on thanks to all the truth of all the GMO conspiracy theories...

Sometimes I feel guilty for bringing this information to those who are blissfully unaware, being a Debbie Downer...sometimes I feel indignation that there are folks out there judging other parents because of their lack of information, I feel like I need to throw down the gauntlet for those that are hurting so much...sometimes I feel so ill-equipped to be a proper friend because I know how little words mean in the face of pain that big.

Sometimes, though, I am thankful that I know enough to know...sometimes I am thankful for knowing to pray...sometimes I am thankful that I can place the burdens of those who are drowning onto fresher shoulders...

I watched "Warm Bodies" with my son...half because he wanted to, half because it looked so clever funny...

The more I watched it, the funnier it got, and the more I liked it...And I seriously am not okay with zombies in general or horror as a genre...

It is super cerebral funny, but more than that, it's an interesting perspective...and I feel on a certain, over-thought-at-3am-level, that it speaks to the dark side of life...it is simply amazing how much a fellow traveller can mean and how healing their love and support can be...

So...what on earth am I saying here??

Just that there are a lot of hurting, broken people out there...sometimes, their pain is so visible, you find yourself disgusted...or unable to look at it fully...sometimes, it is hidden below the surface, seen only by those who know what to look for...like a zombie...

But they really, really need you to love them, to pray for them, to help hold their brokenness together, to help them heal...

Calling All Runners! Did you know your feet can have a voice?!?!



I know a lot of you know us in real life.  And if you know Elise in real life, you know she will abruptly run off and get into trouble.  She is faster than a striking snake if she decides she should leave, and is classified as "a runner", when we leave her in someone else's care:  school, church, babysitters, etc.

But for all her running, she is barely willing to walk any where.  She will not run on the road or any kind of path, unless she is not supposed to.  Her only voluntary forms of exercising are swimming and jumping on the trampoline, and sometimes I wonder that if she knew that was exercising, if she'd be against those, too.

She complains that her feet hurt, and her hips and back and hair...and I truly believe that her joints hurt her...her body moves very awkwardly and is exceedingly prone to injury. 

I run as an outlet for joy and stress release.  I laugh that it is the single thing in my life that has a clear start and a clear finish.  I am not super competitive, but I do love it.  I dabble in 5Ks, I ran a couple of half marathons last year, I have a triathlon coming up soon, and I am shopping 10Ks and 15Ks for this winter.

Recently, a running friend, posted up on her page on Facebook about an interesting running group.  It is called "I Run for Michael".  (https://www.facebook.com/#!/groups/irunformichael/206359252853955/?notif_t=group_activity)

This is the group description: 
"God gave me the gift of mobility. Others aren't as fortunate so I Run for Michael, who do YOU run for?

This is a community forum for inspiration from those who have special needs and for you to inspire others with YOUR story and who YOU run for!


Description

A couple of weeks ago I posted a picture for inspiration for my first official 5K run and one of my facebook friends commented on it. His comment was simple yet profound. He said "you can run for me anytime!"

You see my friend was diagnosed with bilateral hip dysplasia. He was told he would never walk again. He found a doctor who was willing to perform a risky and experimental surgery over a period of two years. He spent a year in a body cast and underwent 17 months of gruelling physical therapy five days a week. He DID walk again. The miraculous results were expected to last two to three years. He recovered enough and so strongly he competed in the Olympics... The Special Olympics. You see, my friend Michael Wasserman has Down Syndrome. This "Old Champ" (as his mother, Mary, calls him) stretched out this miracle 24 years and 24 days. He is now in a wheelchair and can no longer run. But that's not the end of the story... he has been inspiring me for several months with his artwork which he sells in facebook auctions and donates 100% of the proceeds to charity. Last year alone he raised $2500! So I RUN FOR MICHAEL! "

I observed this group for over a week before I signed Elise up to be paired with a buddy and myself as a runner.

I was struck at how much it meant to the runners see the gift the sheer ability to run actually is.  I was floored at how seriously they took their mission to include someone else in their runs.  I was touched at how involved the runners became in their buddies' disabilities and how interested they became in their lives.  I was desperately pleased at how perfectly matched the running community is with the special needs community.  They are both steeped in courage, perseverance, and support.  As a whole, both very quickly reach out to invite "newbies" in and encourage each other to be their best despite pain and difficulty.

Elise was paired up to a runner in under an hour.  I was not disappointed.  Her buddy has already run for her several times, posted pictures, read a chunk of this blog in an attempt to get to know more about her, and genuinely reached out to us.

I hope that if you have a child with disabilities, that you will get them a buddy.  It is wonderful to know that there is someone that is not tied to you or your child's disabilities, that really WANTS to educate themselves and WANTS to get to know them.  The awareness of the non-typical community in a match up like this has amazing possibilities and potential for truly great positive impact on world views. 

I hope that if you are a runner, that you reach out and learn more about disabilities you do not have to fight with daily.  I hope that you will feel afresh, that running is truly a gift, and not just a hot mess that you sign on to for physical fitness.  I hope that you will find a friend and a blessing in the pairing, a true awareness of the PEOPLE behind the disabilities.

I hope that this pairing offers a new perspective for Elise's Buddy.  I hope that Elise will remember the encouragement of her buddy, and that perhaps in time, she finds some inspiration to run voluntarily, too!