Ahead Of Our Time

I received the following in an email today, and I couldn't resist posting it.

Being Green 

Checking out at the store, the young cashier suggested to the older woman, that she should bring her own grocery bags because plastic bags weren't good for the environment.  

The woman apologized and explained, "We didn't have this green thing back in my earlier days."

The young clerk responded, "That's our problem today. Your generation did not care enough to save our environment for future generations."

She was right -- our generation didn't have the green thing in its day.

Back then, we returned milk bottles, soda bottles and beer bottles to the store. The store sent them back to the plant to be washed and sterilized and refilled, so it could use the same bottles over and over. So they really were recycled.

But we didn't have the green thing back in our day.

Grocery stores bagged our groceries in brown paper bags, that we reused for numerous things, most memorable besides household garbage bags, was the use of brown paper bags as book covers for our schoolbooks. This was to ensure that public property (the books provided for our use by the school) was not defaced by our scribbling. Then we were able to personalize our books on the brown paper bags.

But too bad we didn't do the green thing back then.

We walked up stairs, because we didn't have an escalator in every store and office building. We walked to the grocery store and didn't climb into a 300-horsepower machine every time we had to go two blocks.

But she was right. We didn't have the green thing in our day.

Back then, we washed the baby's diapers because we didn't have the throwaway kind. We dried clothes on a line, not in an energy-gobbling machine burning up 220 volts -- wind and solar power really did dry our clothes back in our early days. Kids got hand-me-down clothes from their brothers or sisters, not always brand-new clothing.

But that young lady is right; we didn't have the green thing back in our day.

Back then, we had one TV, or radio, in the house -- not a TV in every room. And the TV had a small screen the size of a handkerchief (remember them?), not a screen the size of the state of Montana. In the kitchen, we blended and stirred by hand because we didn't have electric machines to do everything for us. When we packaged a fragile item to send in the mail, we used wadded up old newspapers to cushion it, not Styrofoam or plastic bubble wrap. Back then, we didn't fire up an engine and burn gasoline just to cut the lawn. We used a push mower that ran on human power. We exercised by working so we didn't need to go to a health club to run on treadmills that operate on electricity.

But she's right; we didn't have the green thing back then.

We drank from a fountain when we were thirsty instead of using a cup or a plastic bottle every time we had a drink of water. We refilled writing pens with ink instead of buying a new pen, and we replaced the razor blades in a razor instead of throwing away the whole razor just because the blade got dull.

But we didn't have the green thing back then.

Back then, people took the streetcar or a bus and kids rode their bikes to school or walked instead of turning their moms into a 24-hour taxi service. We had one electrical outlet in a room, not an entire bank of sockets to power a dozen appliances. And we didn't need a computerized gadget to receive a signal beamed from satellites 23,000 miles out in space in order to find the nearest burger joint.

Some of you, I'm sure, can relate to returning glass bottles to the store, having milk and bread and sweet rolls delivered to your door, using paper sacks to make school book covers and to wrap packages for mailing (still do some of that), riding bikes to school, roller skating on the sidewalks - as opposed to having a battery operated Razor to ride on, no escalators, but at the department store the elevator operator let me "drive" the elevator if there no customers on it.

And so ... the current generation laments how wasteful we old folks were just because we didn't have the green thing back then?  Personally, I think we were ahead of our time, and we didn't know it! 

Those were the days, my friend!

It's only a word ... Really?

Batten down the hatches! I'm about to drag out my dusty, old "soap box."  

This morning, I was brought to tears as I listened to a  DJ read from a blog written by a mother with a special needs child.  I am sharing this blog below because the subject matter touches me to the core of my being.

Lit Up Like a Parade

Thursday marked the end of a countdown my daughter started on January 6: Muses. 

Each night, after she listed her daily gratitudes and wrote in her diary, she would find the countdown calendar drawn on pink paper and dressed in white, silver, purple, and red glitter. With her very special pen, she would carefully cross off one more day, informing me of  the new countdown as she called out wishes of sweet dreams. As the countdown slimmed from a month, to a week, and then to days, her excitement grew.

“I don’t know if I should wear a costume this year or not, Mama,” she contemplated in the middle of a lesson on polygons for her sixth grade math class. “Mama. do you think I will get a shoe? What do you think the floats will look like? Which book should I bring with me to read while we wait? Should I take pictures with my cell phone? I am so excited for beads, Mama!

She was preoccupied with the parade, the Krewe of Muses, and our Mardi Gras holiday. Since our first parades as New Orleanians a few years ago, our Mardi Gras holiday has consisted of Muses on Thursday and d’Etat on Friday. Having a spouse working in the restaurant business, Lundi Gras and Mardi Gras were never spent together – he is busy insuring everyone else has their spirits high on these two special days. And because my daughter is a high-functioning autistic child, we stayed away from the crowds of the super krewes. Just in case.  

We have always watched the parades along the extended route, sometimes called the family zone, and it has been an enjoyable experience. We have reconnected with old friends, exchanging Mardi Gras wishes while catching up with the latest changes in our lives, and have met many new friends. My daughter has played along strangers, created art while patiently waiting for the show to start, and read her first Nancy Drew book along the parade route. Through the challenges that we sometimes face throughout the year, issues dealing with social and sensory issues, Mardi Gras and Muses was the moment of the year where it all faded away, where we were a normal family embracing the culture in our new city, creating memories of our new life. 

As we sat on the sidewalk along the parade route and patiently waited for start time, we talked about what we thought we would see, which bands we loved listening to best, and whether Elvis would make an appearance on his moped. We watched Pussyfooters pass by on foot, 610 Stompers in full uniform, and a few Bearded Oysters with high hair weaving through the crowd.  As parade time approached, as cliche as it sounds, there was a sparkle in my daughter’s eye and a smile so big, it made me wish that she could spend her life this happy – always. 

And then they came. Despite sitting on the ground, our feet on the street, they came in front of us, a gaggle of college kids holding to-go cups full of booze, cigarettes in hand, f-bombs flying out of their mouths with no care who was around them.  Once the parade started, we stood, them still in the street. Then the first marching band hit the road, forcing us all to back up, my daughter getting lost in a sea of twenty-somethings drinking a little too much. Some were local, others were not. She looked at me, her eyes tense.“Mama, I can’t see. And that guy keeps touching me with his beer.” 

Despite her 5′ 6′ frame, she was surrounded by young adults too involved in gossiping about who was going to be screwing who, which picture they had on their phones that were “too epic’ to not post on Facebook, and preoccupied by the booze pouring out of their red SOLO cups. 

One boy, over 6 foot, came dangerously close to starting my daughter’s hair on fire. Only one float had passed by. 

“Excuse me, Sir,” I said, ” do you think you could move over a bit. My daughter cannot see, you’ve spilled some beer on her, and you almost got her with your cigarette.” 

He looked at me blankly, then looked at her. He looked at my daughter from head to toe, staring at the patch on her coat that would indicate she was autistic to medical personal should an emergency arise. He sneered at me before laughing in my face.  

I put my arms around my daughter, warming her up, protecting her, whispering in her ear. 

The tall man with the bear hat on his head paid no mind to us. He didn’t move, either.   

“Hey, man! I need to move. This woman is bitching at me because her retard daughter can’t see the parade!” he shouted to a kid a few feet away.  

He turned back to us, looked my daughter in the eye, and shouted to no one in particular. “This retard is making watching the parade a challenge.” 

My daughter looked at me, knowing he was talking about her, and tears formed in her eyes. I wrapped my arms around her a bit tighter and whispered in her ear that the man was drunk, didn’t know what he was saying, and sometimes the best thing to do is to know the truth about yourself and ignore what other people say.  

My words didn’t matter, though. By then, she had heard what he had said, knew what he was implying about her, and she wanted to go home. Had she not been with me, I may have had a few choice words of my own, but I knew it wasn’t the time and certainly not the place. 

A night she had been looking forward to, planning and anticipating for a few months, had just been marred by that bad behavior of a grown person. 

“Mama. please, can we go home? He told everyone I’m a retard. I’m not a retard, am I, Mama?” she asked. The grin was gone, replaced by a quivering lip. The sparkle in her eyes had dispersed, and they were now filled with a flow of tears falling down her full, pink cheeks.  

“Are you sure, honey? We could walk somewhere else and watch the parade. We could move.” 

“No, Mama. I don’t think that would be a good idea. People there will probably think I’m a retard, too. People don’t want people like me at parades. They won’t let us in to watch the parade. I just know it.” 

I tried to comfort her with my words, encourage her, but the more I pushed, the more this man’s words hurt.We packed up the bag holding the the goods that had entertained us for the  two hours  we sat on the sidewalk, waiting for our special night. The bag that held my daughter’s snacks, sketch pad, books, and blanket. I took her hand, and led her to the car to go home.  

She cried in the car on the way home, having seen exactly two floats from Muses and having exactly zero throws to show for the verbal attack that she endured just trying to watch her favorite parade. 

“Honey, I am really sorry about what happened. Maybe we can try tomorrow night. Maybe we can go to a different spot, ” I said, trying to encourage her and save the rest of our Mardi Gras. 

“No, Mama. I don’t think I want to do Mardi Gras anymore. Not ever again.” 

A year ago, I asked my daughter what she most loved about Mardi Gras, expecting her to say the throws, the beads, and the pretty costumes. Her answer surprised me: “I don’t feel like I am different than everyone else during Mardi Gras, Mama. During Mardi Gras, everyone is a little weird like me." 

That night, she didn’t want to share her daily gratitudes, shrugging her shoulders and telling me she didn’t really feel grateful for much. She didn’t write in her journal, only wanting to forget the night had even happened. Her countdown calendar peppered the floor in tear-soaked pieces. A night that he had probably already forgotten by the next morning; a night that her broken heart will never let her forget. 

Retard! Some people might say, "Oh, it's just a word. You're being too sensitive! What's the big deal?"


Well - let me tell you!  Originally the term "mental retardation" or "mentally retarded" were medical terms with a specific clinical connotation referring to a person with limitations in mental functioning and skills. However, today the "R-word" (retard, retarded) is tossed around by many people as a synonym for "dumb" or "stupid" or as a way to show that something is "uncool."  I wish I had a nickel for every time I have heard a young girl say something like - "Oh my hair is so retarded today" or  "That movie was so retarded!"

Agghhhh!  Hearing the word used in this flippant manner is like the proverbial fingernails on a blackboard to me! It is downright hurtful!

Words have power!  What those people don't understand is that using "retarded" in this manner, only reinforces painful stereotypes that ultimately degrade people with intellectual disabilities.  I've heard it described this way - When used in the slang sense, "retard" means defective in quality.  It all traces back to the cold hard roots of the undesirability of disability!

In 2008, the Special Olympics launched a campaign to combat the inappropriate use of the R-word.  March 31, 2009 was the first annual day of awareness for "Spread the Word to End the Word."  One year later, the campaign reached 100,000 pledges, and today there are 239,390 pledges of support to eliminate the demeaning use of the R-word.

Parents - listen to the words your kids use.  If you hear them using the R-word in a demeaning way, explain to them how hurtful their words are to families with children that have special needs.  Please join me and others in carrying out the following pledge:

I pledge and support the elimination of the derogatory use of the R-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.  

A side-note  to the above blog:

One day after finding out about Emily being bullied on their parade route, the all female Krewe of Muses hosted a personal parade for her in their float den.  New Orleans locals called it Emily Gras.  They opened up their float den and let the little girl climb onto the shoe float and gave her a little of the Muses parade that she missed. 

  

A Day In The Life ...

So this is our normal morning routine:

I get up and go about getting ready.

Pat gets up with Tyler, unlocks the pantry and refrigerator, lets Tyler get his cereal and banana. He sits with him while he eats - then locks up everything, and Tyler goes upstairs to get ready for school.

I finish getting ready, and go into the kitchen to get breakfast for the road. Tyler yells down the stairs, "Mom, you look pretty." (Which I always have to chuckle about because he can't even see me.)

I say "thank you. Have a good day today." (That is code for -- don't get into any trouble at school today.) He says, "I will. I love you."

About the same time that I leave to go to work, Tyler leaves to go to school on the bus - saying, "Goodbye, dad, goodbye, mom" as he goes out the door.


This is what happened today:

I got up and went about getting ready.

Pat got up with Tyler, unlocked the pantry and refrigerator and let Tyler get his cereal and banana. He sat with him while he ate. But today, while he was sitting with him, Pat checked his email on his phone.

Tyler went upstairs to get ready for school.

I finished getting ready and went into the kitchen to get breakfast for the road. -- Total silence from upstairs.

I looked through the pantry for a breakfast bar - asked Pat about it, and he came to the pantry to find it.

I heard the front door open, and Tyler was going out the door -- without saying goodbye!

I said, "Goodbye Tyler. Have a good day." He turns around - barely - and ducks out the door.

I told Pat, "Tyler is up to something. He has something with him that he shouldn't have. If it's his iTouch, I will take it away, and he knows that because I've told him so."

We continue to look for the breakfast bar. Then Pat says, "Where's the loaf of raisin bread that I bought last night - and put right there." (pointing to an empty spot in the pantry.)

We both searched the pantry - and searched Tyler's room. Nothing!

So, Pat got dressed and followed the bus to school. He went in the back door of the school by Tyler's classroom just in time to see Tyler leaving his classroom (which he shouldn't be doing) -- going toward the hallway -- with the loaf of bread in his hands. (Several slices already missing.)

Pat calls his name, and Tyler turns around and says, "Oh - you caught me!"

And so it goes -- another day in the life of a child with Prader-Willi Syndrome. It's almost impossible to be vigilant 24/7.

It makes me tired ...

It's Riddle Time

What do you get when you cross Tyler with an empty house and a homework assignment to be helpful around the house?

Drum roll please --




How about dishes washed in a dishwasher filled with Soft Scrub bathroom cleaner ... and a big smile on his face when I got home.

That's So Special --

I don't take credit for this, but I thought it was great and wanted to share. To all the moms of children with special needs.

Regular moms know the names of all their friends. Special needs moms know most of their friends by their username. 

Regular moms judge other moms when kids have tantrums in stores. Special needs moms say to themselves, “Hmm, I wonder which disability he has?” 

Regular moms’ kids have a teacher. Special needs moms’ kids have a team. 

Regular moms talk about accomplishments. Special needs moms talk...about skills, as in play skills, conversation skills, life skills, social skills and vocational skills. 

Regular moms go out for dinner and a movie with their husbands every month. Special needs moms have a date night with their husbands every…wait, what decade is this? 

Regular moms meet for a ladies night out. Special needs moms get together at support groups and forums. 

Regular moms think OT means overtime. Special needs moms know more acronyms than a NASA engineer. 

Regular moms complain their husbands sit on the couch and watch TV while they do all the work. Special needs moms...well how about that? Some things do stay the same! 

(Just kidding dads, we know you do your part!)

What Kind of Contest?

So, my mother (who is 85) lives in a senior (over 55) residence facility. They had their Halloween party last night. They wore costumes and played games. Oh, and she told me they had a "wet t-shirt" contest! 

While I was quietly pondering those images and wondering what I was going to say next, she said, "yes they rolled up wet t-shirts and you were supposed to see how far you could throw them!" ... Whew!

Observations From Inside The "Big Box"

I said goodbye to the "Big Box" store tonight. As I walked out the door, I had many different emotions -- everything from happiness that I will be spending more time with my boys, relief that I will be able to get a few more hours of sleep each night, a little fear at the thought of needing to replace the income somehow by working from home, and even sadness to be leaving some of the people I have gotten to know during my employment there. My head is full of so many thoughts.

I never dreamed, for instance, that I would have been there 16 months when I began working nights in May of 2008. That was when gasoline was up to $4 a gallon, and the 55-mile a day round-trip to and from my "day job" was wiping out my wallet. It was supposed to be a temporary fix -- just until the gas prices became more manageable. But, even after gas prices came down, I found that the additional income made a difference for my family. Managing two jobs (15-hour days) definitely took a toll on me. The extreme temperatures in the un-airconditioned, un-heated garden center did a number on my "prone to hot flashes" body. (Only about 3 weeks in the spring and 3 weeks in the fall had pleasant temperatures.)

But, I walked away from there a little bit wiser and hopefully, a lot more considerate. Who would have thought that at my age, I would still be learning those kinds of lessons?

It's Not Just In Harry Potter's World

While watching the Harry Potter movies with my son, I let my imagination wonder what it would be like to have an invisibility cloak. How cool would that be? To be able to be invisible -- to be that "fly on the wall" so to speak. I can think of many times I have wished for that ability. When it serves my purpose, it would be great. But what about the times I don't want to be invisible?

I realize that I am blessed to be able to spend my days working in a job with loving, compassionate people who appreciate what I have to offer, a place where we truly care about each other and where we feel free to share our joys and burdens. But I learned that to some of the people outside the "Big Box" -- I was invisible!

When my son was about 4 years old, I will never forget something he said to me one night. We had been out later than usual, and as we drove by stores that had closed for the night, in his little boy innocence, he said:

"Mom, where do they all sleep?"


"Who, Austin, who are you talking about?" I said.


"You know -- the people inside the store? Where do they all sleep when the store closes?"

Although I found great humor in his childlike curiosity, I understood what he meant. In his tiny world, these "people inside the store" were nameless ... faceless ... lifeless. They were there only to serve us when we needed something, then they would go back in their boxes to sleep, only to wake up and once again, meet our needs. No lives, no families, no joys, no heartaches, no struggles -- they were the "invisible" people.

Perhaps the contrast between my two working environments is what caused me to become so aware of the cloak of invisibility that often surrounded me each night. You see ... there are some people who still live in that tiny world that belonged to my young son. As a garden center greeter, I learned that first-hand from the "oh-so-busy-don't-even-think-about-talking-to-me" people that I encountered. The ones that wouldn't make eye contact with me no matter how hard I tried, much less actually respond to my greeting. Or the ones that walked through the door, all the while talking on their cell phones with their eyes straight ahead, never even acknowledging there was a human standing 3 feet in front of them offering a smile and a greeting. To these people, I was invisible ... I was one of the nameless, faceless, lifeless people there to serve them.

Everyone Has A Story

Have you every been guilty of becoming frustrated with the employee who isn't as helpful as you think they should be? I know I have! I didn't stop to consider what that person might have on their mind at that moment.

I confess, that in the past, I have been guilty of looking straight through people as I go about my busy day, not really seeing or caring about them or their lives. But, hopefully my experience over the last 16 months has changed how I will react in the future! The people who I worked with in the "Big Box" store are real people with life stories that might surprise you. People that have struggles that make mine seem trivial in comparison. As in my case, a lot of them are juggling two and in some cases, three jobs and are tired, burned out and pressured by the questions of what the future holds. I truly came to care about these people. I've changed their names, but here's a glimpse at just a few.

James -- the businessman in his mid 40's, who along with his wife, used to run a successful real estate leasing company and lived a typical suburbia life. The business suffered with the downturn in the economy and eventually failed, resulting in losing their home. After spending some time living with relatives and a little time living out of their car, they have just recently moved into a small apartment, along with their 9-year old son. He is not only dealing with the pressures of supporting his family, but his wife has slipped into a life of alcoholism and refuses to get help. His concern is for his son and his safety while he is away from him and wondering how he can give him a "normal" life -- that life he was "supposed" to be living.

Ann -- the 50-year-old wife, whose husband was in the US legally on a work visa, but who, due to a paperwork error, was deported back to Mexico. She can't go there to see him, so for 10 years, their only contact has been through weekly telephone conversations. Although she is trying to raise enough money to get a lawyer to help her get her husband back in the US, her income is only enough to meet her own immediate needs. On the outside, she always wears a smile. You would never guess that her heart is breaking. Only after getting to know her and asking about her family did I see the tears that she fought back.

Tashaonda -- One of my favorites, a precious tiny young girl who appeared to be in her late teens, but who was actually in her early 20's. She has worked in the "Big Box" for many years. She knows that store inside and out. Her eyes sparkle when she talks, and she always has a smile and a cheerful word for everyone. She has a dialect and a drawl that adds to her bubbly personality. Early on, as a new employee, I knew very little about the store or its inner workings. But, almost without exception, customers would see the two of us, ignore her completely and immediately come to me with their questions. It seemed that, based solely on outward appearance, they decided that the tiny young girl couldn't possibly help them.

One more story about Tashaonda. When I first started working there, she had two small sons under the age of three that she was raising without the help of their father. Late last year, she learned she was pregnant once again and was due to give birth in March. Just prior to the birth, she was stricken with Bell's Palsey. The outward symptoms of this are very much like those of a person who has suffered a stroke. Following the birth of her third son and the end of her leave of absence, she returned to work, still showing the outward signs of the Palsey. Her face was drawn up, her mouth twisted, and she did not have full use of her hands. But the one thing that had not changed -- she still had that smile and twinkle in her eye!

Jason -- An ex-marine in his early 30's. During basic training, a buddy was seriously wounded during some maneuvers. Jason carried him the two-mile trek back to his unit to get help, during which time he fractured his hip. He didn't let on to his superiors about the injury, because he was just a few weeks away from graduating. He knew it would lead to a medical discharge, and he had been through too much not to see it through to completion. However, since he waited so long, when the medical discharge did come through, they refused to acknowledge that the injury was sustained during training and therefore, he was denied the medical benefits that he deserved. Without any benefits, he has not been able to get the surgery he needs to correct his hip. As he continues to fight for what he deserves, he is burdened by the fast approaching 10-year deadline he has to complete his claim. He doesn't have the money he needs for the legal process.

These are just a few stories. There are many more. They remind me to check my prejudices at the door and really see the people I encounter every day. I want to be the first one to say "hello" to the greeter, or offer a smile and a kind word to the men and women who are stocking the shelves or cleaning the bathrooms. I want to be the customer who has patience with the new high-school cashier who gets flustered over a mistake that he makes, or with the associate who has to tell me that they ran out of notebook paper two days before school starts.

I want to remember ... these are real people. They are not invisible. They have a story, too!