DISNEY AND THE MAGICAL WORLD OF DISABILITIES

It’s been called a “Modern-day Mecca.” Most North American families attempt a pilgrimage at least once in their life time. It’s billed as the Happiest Place on Earth. It’s Disneyland.

My parents hated it. The slick consumer culture, the crowds, the noise, the underlying thrum of excitement, but most of all, the price. They didn’t feel the magic.

My husband and I do. We love Disneyland! We’ve always loved it! The price is a stretch to say the least, but well worth it to us for the excellence in every detail, the nostalgia, the rides and the underlying thrum of excitement. Since we have family who live in the area, we’ve been able to go a lot more than the average family. It is a perk we don’t take for granted. Bringing our children, especially when they were young, remain some of the best family memories in our arsenal.

The First Visit

We took our youngest daughter as a baby, along for the ride while her older sisters gaped in amazement at the “real” Winnie the Pooh and screamed with delight on the Peter Pan ride. She slept through most of the day, but looked cute in pictures. We were just like everyone else.

The Second Visit

Two years later we were back. I had some misgivings about B’s ability to handle the day, so my parents (who love us enough to endure the park they dislike) tagged along. I had heard that there was some sort of accommodation for guests with disabilities, but resolved to avoid it. I was embarrassed to ask. I didn’t want to be unfair. I was sure we could handle it, just like everybody else.

Unlike a typical 3-year-old, my daughter wasn’t able to walk or even stand on her own. Desperate to be mobile, she would scoot on her bum at an extraordinary speed. As you can imagine, this was a filthy way to travel and terribly hard on clothes, and terribly inconvenient to adults who don’t expect a headstrong little speed bump to pop up unexpectedly.

She was okay as long as we kept her in the stroller, but her sisters were eager to go on rides and show her all the wonders she had slept through last time. The waits weren’t particularly long, but holding a squirming, screaming toddler can make time pass extraordinarily slowly. Not only was she dying to move, but she could see something exciting, just out of reach, and was enraged that we wouldn’t let her go to it immediately. As the lines wind closer and closer, then back around, farther away again, she must have thought we were playing a cruel trick on her. By the time we made it onto the ride she was almost inconsolable.

She LOVED being on the ride. She would squeal and clap and laugh with pure excitement. For 30 seconds. Then it would be time to get off; we would pry her fingers off of the bar and drag her away and head to the next lineup. By now, she really was inconsolable.

After a few hours, she had to go home. It was all too much. It was just too hard. The crowds. The noise. The heat. The waiting in line. She wasn’t the only one being punished for it; we all were, the whole family and everyone in her vicinity.

Third Time’s a Charm

Our next visit, I was prepared. We had been planning and talking about this day for months. B had been looking at her sister’s pictures and had become enamoured with the Disney Princesses (though she didn’t have the attention span to sit through an entire movie). I had documentation of her Down syndrome (in case looking in her eyes wouldn’t be enough) and after our last disastrous visit, absolutely NO compunction about taking whatever extra help Disney could offer us. After all, I’ve finally made my peace with the fact that we’re not just like everybody else.

There seemed to be a lot of confusion about where and what we were needing, but we finally found ourselves at the City Hall talking our way into a “Special Assistance Pass.” They didn’t give it willingly at first, but I stood firm: we just can’t handle a repeat of our last visit, not when she’s so excited to be here.

The Pass was intended not just for guests who have visible disabilities, but also those with cognitive, emotional or behavioural problems and need extra support to be able to enjoy the Disney experience. Usually, this meant using an alternative entrance (fast pass or going in through the exit) and waiting there. We didn’t cut to the front of the line right away, but waiting in a calm, cool, less crowded spot makes all the difference.

I’ll admit, it makes our ride experience much faster. That’s the only way it works for us. B can’t tolerate many different rides, so mostly we went on the tamest rides over and over again. But she was wild with excitement!

There’s an age, when adults are giants and characters in books/movies are real and that cool veneer of realism hasn’t yet begun to form. I love taking my kids to Disneyland at that age. They call it “magic” and it really is. My 5-year-old was there and we all basked in her wonder.

Now

She’s still there. At 9-years-old she still believes. She is still amazed. She watches “Brave” at least once a week and if you can understand the words, she’ll tell you the entire story. She often stops and looks at the Disneyland pictures hanging on the wall. She asks to go back all the time.

There’s not much that our entire family, big kids included, can do and enjoy together. Outings are hard. Interests range wide and far. Attention spans are short. These days, B is quickly overwhelmed by new situations, especially ones involving crowds and noises. Even more so than 4 years ago,she needs support.

Now we have a little brother in the mix. He’s never been to Disneyland, and that just seems wrong when you consider how much our family loves it. He has his own blend of special needs: extreme hyperactivity, sensory processing disorder and general impulsivity to name a few. I’ve learned a lot over the years about our limits and our needs, and I’m no longer embarrassed to ask for help. He needs support.

We’ve begun planning (and saving) for a family trip to Disneyland. It’ll take a while, so we’ve booked a timeshare for December 2014. But that anticipation is half the fun for our crew. We’ll have our days mapped out, eateries scoped and show times noted.

That is, if Disney has a workable special needs Guest Assistance program available…

Right now, Disney is getting rid of their Guest Assistance program. It has been badly abused over the years, which has ruined it for those of us who truly need it. They are rolling out a new program on October 9th. 

It sounds terrible.

I had hoped that this was one of those online stories that was wildly exaggerated, but my research has been discouraging. The Disability Assistance System is like a modified Fast Pass, which involves at least two extra lineups/waits, only applies when the wait time is more than 45 minutes (waiting that long is so far beyond our son’s capacity that it’s laughable), AFTER extra lineups, we’ll end up in the regular line anyway (which I’m sure will be fun for everyone)… oh, and it only works on a select few rides.

Without extra help, Disney isn’t do-able for our family.

Just one more thing that’s out of our reach.

There are other families with even more complex problems in the same boat.

As a company, Disney has a reputation of going the extra mile, making every effort to create an amazing experience for ALL their guests. They have certainly won us over in the past. I can only hope that they will hear what special needs families, and those who support them, are saying. I hope they will build a system which actually helps my children and others like them. I hope they’ll make it a priority.

If you want to help, please:

Sign the petition

Borrowed from http://imgur.com/WJxPj

So here’s me, sad that so many people abused this system which worked so well for us. Sad that the new system seems so unworkable. Mostly, sad that we might never get to share a Disney adventure with our boy.

CHRISTIE HOOS

So Here's Us

DAMSEL IN DISTRESS - Part 759

It’s that time again. Time for me to dust off my recurring role as the damsel in distress. I’m beginning to fear I’ve been typecast by fate. So far this blog has entertained… well, not millions, but many definitely ...  my hero husband as I lock my keys in the car, get stuck in the snow and give myself a black eye, just to name a few.

I have no one to blame but myself. Or my children, and the significant sleep deficit which is definitely their fault. But what kind of Mom blames her own children for her frazzled, overwhelmed and far-too-often absent minded performance?

This one. I blame them. I love them, but I blame this crazy, relentless, exhausting life and my subsequent doziness on those adorable mini people. I don’t know who I’m going to blame when they grow up and leave me.

My latest drama begins in our local supermarket. I sped through my list as fast as humanly possible while the boy alternated between screaming at the top of his lungs (and he has some impressive pipes on him) and cheerfully pulling everything off the shelf as we rolled by. By the time I got to the checkout line I was frazzled and nearing defeat.

$188.33

More than I’d like, but par for the course these days for the feeding, cleaning and diapering a family of 6, at least in our part of the world. Four of us don’t even need diapers, so that’s a huge savings right there.

Feeling a little smug about my foresight, I pulled out my newly activated credit card. My wallet was stolen last week and I’ve been slowly re-making my plastic identity. It’s one of those extra tasks which seems insurmountable in the face of our usual daily grind. But I did it. I called the number. I even signed the back.

I did not, however, take note of the new pin number which would be arriving in the mail also.

*sigh*

So here we are, with a fully loaded cart of groceries, a half eaten bag of fishy crackers (see above re: screaming), a grumpy three-year-old, and the Perry the Platypus sticker he just stuck on my chin. Embarrassed, but not unused to this position, I tell my story and ask them to hold my groceries until I can return with yet another new credit card waiting patiently at home to be activated.

I felt so bad for the man waiting behind me. He had a bag of oranges and a couple bananas. He was about my age, but polished, put together. The kind of guy who drives a nice car and goes to the gym a lot.

I wonder what he saw as I stood there in my second-hand boots, bags under my eyes and hair falling out of its clip. My son whining and grabbing me while sporting a wicked black eye and a runny nose. I was cringing inside. Feeling judged. Feeling humiliated.

As the checkout lady begins to wheel our cart away, he says, “Wait!”

He leans over and peers at my receipt. He pulls out his credit card. He waves his hand, like it’s no big deal.

“I’ll pay for it. Then you won’t have to come back. It’s my gift to you.”

“Uhhh… oh no, no.” I stammer. ”It’s, like, $200. Really, it’s okay.”

He insists. He pays. He acts like it’s no big deal.

This was an extremely rare moment for me. I didn’t know what to say. I didn’t even know how to start. I was struck dumb. I hope I remembered to say Thank You. I hope I said it a lot.

As I packed my free groceries into the van, he began to drive away. I flagged him down, standing outside his window in the rain, so I could at least shake his hand and find out his name.

He told me that it seemed like I was having “a day,” plus having my wallet stolen and all… He said something about putting good out in the universe and it’d come back eventually. 

His name was Nick.

I had a lot of feelings about this. My first was pride. I didn’t want to seem pathetic (though, let’s face it, I probably was), and I could take care of it myself. My second was practical, and just a little bit mercenary. I’m going on a trip this month that falls outside our budget and we are feeling it. $188.33 is a lot of money to us. My biggest feeling, however, the one that has followed me around ever since, was bone-deep, soul shaken, faith-in-humanity-restored, just got a-hug-from-God, giddy and amazed GRATITUDE.

It’s not the $188.33. It’s not the time, hassle and embarrassment saved. It’s the unexpected, unsolicited, unassuming grace of the moment.

I’ve been tasting it ever since.

And that’s worth a whole lot more than $188.33.

So here’s me, thanking Nick. Because I needed that. 

CHRISTIE HOOS

So Here's Us

I AM FROM

I am from snow pants and toboggans, from stacks of library books and homemade mac ‘n cheese.

I am from the big house on the corner, filled to the brim with friends and strangers and children always underfoot. I am from crab apple trees and lilac bushes. I am from a red metal swing set and forts in the basement. I am the brave hero and beautiful princess and brilliant police dog from thousands of adventures. I am from Anne Shirley, and Laura Ingalls, and Caddie Woodlawn.

I am from camping trips and bike rides, from going for a drive, with no particular destination in mind. I am from Bill and Barb and the Robson girls. I am from eating ice cream year round and reading into the night. I am from “life isn’t fair” and “God is in charge” and “The Old Rugged Cross.” I am from napping in a slip between morning church and evening service.

I am from eating the crusts after the Breaking of Bread and stealing sugar cubes in the foyer. I am from Pioneer Girls and Awana and Youth Group. I’m from The Meeting, from the Chapel, from full-time ministry, from questions and wrestling and finding my own way to love Jesus.

I am from Calgary and Scotland, roast beef and apple pie. From the old country, from a farm on the prairies, from stories of William Wallace. I am from Los Angeles, from avocado and orange trees, from cousins down the street. I am from family friends and Three Day Meetings, from a man who fell in love with his friend’s little sister, from a 19-year-old woman who moved across the continent for him.

I am from slide shows of family trips, from playing in the attic, from progressive Christmas dinners. I am from the blue Porsche in the garage, built before I was born. I am from walks around the reservoir and climbing the big “H”, from Stampede breakfasts and cowboy hats.

I am from biting my tongue and being the better person. I am from laughing and eating and endless small talk. I am from people who always have room for more, who always have more to give.

So here’s me.

Taking part of the I Am From synchro-blog at She Loves Magazine. You don’t have to be a writer, just follow the template and write your own version of George Ella Lyon’s poem. It’s worth doing.

CHRISTIE HOOS

So Here's Us

APOLOGY FROM A RECOVERING EVANGELICAL

“Can I get you anything?” she says with a pleasant smile, warm, but professional.

“I’ve got something for you!” you say, with all the giddy certainty of an As-Seen-On-TV salesman. “GOD has given me a picture of you, and I see… I see…” - pause for dramatic effect -“…YOU standing in a high place. You’re… looking out… over the world, or maybe your own life. This is important. This is a message. What does it mean to you?”

“Um…”Wrinkling her brow. Shifting from one foot to another. The smile firmly fixed in place now.

“Maybe you need to change your viewpoint, so you can see more clearly.” 

All eyes are on her now, searching, intense, as if, by simply looking, you might unmask her very soul.

“O…Kay…” She’s freaking out now, but far too polite, too Canadian to break. “Refill?”

You sat in the booth behind us at White Spot. I didn’t mean to eavesdrop, but at least two of you have loud preachy voices and I heard some familiar churchy buzz words sprinkled liberally throughout the discussion. I cringed a little at the tone of your conversation, but I understood…

I came from that world. Although many of my beliefs have evolved, I still visit from time to time. I used to work for one of the most aggressive evangelical organizations in the world. Once upon a time, I was you.

When the pretty server came to your table, you took her hostage. Not with guns or threats, but with words. Loud, preachy, bizarre words. Especially coming from such a large group of young people. You “prophesied” over her. You “spoke God’s encouragement into her life” while she tried to politely back away. You asked intrusive personal questions. You tag-teamed her. It went on and on.

It wasn’t pleasant, seeing it from the outside. I searched my memory for hints that I had ever acted like this. Thankfully, what I came up with wasn’t nearly so obnoxious or odd. But still… embarrassing.

Didn’t you see? The tense smiles, the nervous laughter, the stiff body language… not just hers, but everyone around you. Didn’t you notice? That you were preventing her from doing her job. That there were tables of people waiting impatiently for her attention. That her manager was shooting angry looks her way. Didn’t you care? That she was incredibly uncomfortable. That everyone nearby was also. That the family behind you was falling apart, both little ones crying as we waited an extra 20 minutes for both the bill and the ice cream they were promised.

Granted, my personal irritation plays a big part here. With our nice family outing descending into chaos, as Dad hauls one out to the van and I encourage the other to stop crying and hold it, just a few more minutes, until I can pay (she didn’t by the way, but I can’t blame her for this potty training fail). I’d take it on the chin if I knew you’d actually done some good in the world. But all you did was offend and alienate a stranger, and cause a crowd of people to shake their heads and turn up their noses in disgust at “those ridiculous Christians.” You made us all look bad.

The uncharitable part of me assumes that you’re enamoured with the sound of your own voice; that you’re showing off, intentionally or unconsciously. If I give you the benefit of the doubt, then you really did want to encourage her. I remember my own burning desire to truly please God and help others, channelled into the same pushy ethos; strong enough, even, to override polite Canadian reserve.

Whether it was pseudo-spiritual posturing or legitimate reaching out, you didn’t love your neighbour well. As you walked out of the restaurant with us, I saw you congratulate each other, certain that you had forced some sort of revelation on that poor girl. I could have shaken you, every one of you.

That’s not what it’s about. You need to REPRESENT. Not just me, though I follow the same God in my own way. Not just your particular brand of Jesus. But the Man himself. The man who said the highest commandment, next to loving God, was to love others.

Love. No agenda. No disrespect. No selfishness.

I hope, at least, that you left a heck of a tip.

So here’s me, a recovering evangelical. I’m sorry for all the ways we make people uncomfortable. I’m sorry if I’ve ever done that to you. We mean well, we really do. Please forgive us.

CHRISTIE HOOS

So Here's Us

UGLY IS A MATTER OF PERSPECTIVE

The downside to 11-year-old slumber parties is clear – a very big mess, very little sleep and the very real danger of permanent hearing damage. If you have not experienced the extraordinary pitch and volume of excited pre-teen babble… well then, I’m happy for you.

On the upside, it’s a fascinating peek into the mind of children-becoming-women. I mostly hung out in the background at my daughter’s first sleepover party, as per her strict instructions. And if I happened to lurk in the hallway listening from time to time, who’s to know? After all, it is my house.

It’s a lot like I remember. A lot more OMG and iPod usage than I’d like, but the silliness and the shrieking and the inhuman levels of energy ring a bell. The enthusiasm of childhood intersecting with the concerns of growing up.

The birthday girl wanted a “fancy dinner,” so she and all her guests dressed up, then big sister played waitress and Mom played chef and somehow everyone got fed. There were candles and flowers and the good china and the good white tablecloth. It’s possible that more food ended up in the “wine” glasses than in their stomachs, but they weren’t complaining.

After cheesy party games, presents, a movie, pranking poor big sister and several hours of whispering (until Mean Mom made an appearance at 2:30 am), they managed to get a few hours of REM in.

Enough, apparently, that the next morning they found a few minutes to wax philosophical. They even asked me to weigh in on the conversation. I think the question had originally been asked in jest, but the discussion seemed pretty serious for pajama clad partiers.

If you had to choose,
one or the other for the rest of your life,
would you rather be pretty or smart?

On the surface, it’s a simple conversation starter. Like, what kind of superpower would you choose? Or where would you go if you could go anywhere in the world? Fluffy and unimportant. But in this day and age, for a group of young women just discovering who they are, it’s a serious question.

What’s most important to you? Who do you want to be? Why?

Of course, this is a rhetorical argument – we don’t have to choose, though it may seem like it sometimes (but that’s a blog for another day). And on some level, our physical appearance and natural intelligence is not within our control. We are who we are.

Accepting that is the first step to contentment. Still, we can nurture and enhance both our mind and our look. With limited resources, we tend to focus more on one or the other.

Our priorities and values, especially as women, can be largely determined by our devotion to either appearance or substance. It affects how we see ourselves and others. It affects our goals and our dreams and our sense of purpose. It affects how we spend our time and our money and our lives.

I gave the girls the “Mom Answer” they expected. Of course, I’d rather be smart. That’s what I was supposed to say.

Afterwards I wondered… is it really true? I mean, I definitely want to be pretty. I’d love to have movie-star good looks and wear size 2 and fend off drooling hoards of admirers. Who wouldn’t? But would I trade the power of my mind, the things I know and have experienced, my connection with God, my common sense, and my hard-won slivers of wisdom for that? Even just a little bit?

Never. Not for all the pretty in the world. I wouldn’t lessen myself that way.

Yet, women do that all the time. We live in a world that tells girls, in thousands of different ways, that their value lies in how they look and what they weigh and how well they can attract a man. Sometimes we even slap a “feminist” label on it and call that power. But real power isn’t being noticed or shaking your ass – real power is being confident, unique and strong in a way that is MORE than skin deep. The world doesn’t need more pretty women, it needs more smart ones.

Without time to prepare, I didn’t offer the eloquent, inspiring comments I would’ve liked. I said something about looks being temporary. That I need intelligence to understand and enjoy the world. That I want to do something good and important and make the world a better place, not just decorate it.

One little girl looked at me, then said, quite sadly,

“But then you’d be ugly.”

There was a pause then, before other conversations intruded and crepes wanted flipping and sleeping bags needed folding and the party carried on.

I carried that sad comment with me all day. And I wondered about the nature of ugly, about the world we live in and the world we’re making.

If a girl chooses smart. If she chooses substance. Could that, ever, be ugly?

So here’s my answer girls: don’t pick pretty. Pick smart. Even better, pick kind or brave or outstanding. Because there’s nothing uglier than a pretty face with nothing behind it.

CHRISTIE HOOS

So Here's Us

YOU AE HERE

You are here
says the map.
So I find my bearing.
A plan to hold.
Destination nearing,
I’m feeling bold.

You are here
says the map.
I squint my eyes and peer
at ruts below.
No finish line, not here.
Miles left to go.

You are here
says the map.
And though I’ve come so far,
not much has changed.
Where you go, there you are,
the ’you’ remains.

You are here
says the map.
Not where I was before.
Or where I’ll be.
Here. Now. No less. No more.
Ever, always, entirely me.

Life is for living,

Not doing or going or getting or having,

Simply

Being.

Me.

Here.

Now.

I am here.
Today
That’s enough.

So here’s me, remembering my One Word for the year. Today.

CHRISTIE HOOS

So Here's Us

THE STORIES WE TELL OURSELVES

As I sat in my Children’s Literature class this summer, there were only two people my age in the room – another student and the professor herself (though she’s younger than me also). It’s a common situation when you fall under the “mature student” title.

There is one moment that has stuck with me from that course. We were discussing one of my favourite books: Little Women. It’s the classic story of 4 sisters growing up during the Civil War. This book was the “Harry Potter-like” MUST READ of the early 19th Century. Since it was first published in 1868, it has NEVER gone out of print. Surprisingly, even for this day and age, only a couple of us had read it before.

It was not well received by the class.

Nothing happens.

It’s boring.

I kept waiting for the story to start.

It’s sappy and sentimental.

It’s not real. Life just isn’t like that.

What’s the point?

The complaints were sadly reminiscent of my own daughters’ less-than-thrilled reaction to the book. And my sisters. And several of my friends.

Naturally, I bristle and feel personally wounded by these “attacks” on my pet prose… every time.

Rationally, I know that others don’t sink into the warm comfort of nostalgia as they read it, or filter the stories and characters through their own somewhat old-fashioned upbringing. My experience with this book is my own and cannot be duplicated. I know that “beauty is in the eye of the beholder,” “different strokes for different folks,” and all those “to each their own” clichés apply here. But it still feels personal.

I’ve read Little Men about 30 times (at least once a year since I was 10). Even more than the much more popular prequel, THIS is a story that caught my imagination. Here was the type of parent I wanted to be. Here was the type of life I wanted to lead. In many ways, it’s my ideal.

Maybe it’s not sexy or exciting, but it’s a good story, a very real story. Much like these books, in my life…

Not much happens from day-to-day.

The focus is on the mundane, the details, the people closest to me, and my, very slow, character development.

Most of my stories are small and ordinary, but they make me who I am.

Sappy and sentimental works better than cynical and self-absorbed.

Under all the complexities, regardless of context, life still boils down to a few close relationships and trying to find my place in the world.

The point is this: there is poetry in the everyday, we just have to see it.

I completely understand the appeal of the dramatic, the fantastic and the amazing. Don’t we all wish life could be so exciting? Science fiction is usually my first choice of reading material, but I always come back to Anne Shirley and Elizabeth Bennett and, yes, the March sisters.

Domestic realism in literature isn’t what it used to be. I honestly don’t mind the grittier storylines and darker undertones. There’s something relatable about it, something that rings true. Sometimes we need to tell our own stories this way too. Raw and real, without neat, predictable endings, without resolution – the story in process, too messy to make for pretty bedtime tales.

But there are times when we need to hear the best truths in our own story, to mine the highest ideals from our daily grind, to filter reality through faith, to find the sentimental spin… because these are the stories that give us hope and fill us with purpose and show us the inestimable worth of our day-to-day.

So I will tell my sweet, sentimental tales without apology, to others and to myself. It’s not my only truth, but it’s the best one. Every time I do, I’m better for it.

I like to think that my classmates simply haven’t grown into Little Women yet. They weren’t raised on it like I was. But as they set up households and build families and settle into familiar ruts, perhaps they too will learn to appreciate the subtle appeal of everyday beauty.

So here’s me, happy to report that my 13-yr-old listened to Little Women on tape last year and LOVED it.