Why I Won’t Take The Ice Bucket Challenge

I’ve successfully dodged it for two weeks but now I’ve been called out by five different people to take the Ice Bucket Challenge. And I won’t take it. But because of the social media attention this challenge brings, and because the five people who challenged me are all involved with Merrimack Hall as volunteers, I feel pressured to explain why.

My daughter, Emma, who is the Development Director for Merrimack Hall, said last week, “I sure would like to meet the national Development Director for ALS and shake his/her hand…did they ever hit the fundraising jackpot!” Boy, did they! I am happy for the ALS Society that a gimmick they picked up from Matt Lauer two years ago has gone viral and has raised so much money and awareness for their cause. And sure, I’m a bit envious of their success because I spend all of my time…as a volunteer…trying to raise enough money to provide the program of arts education that I created to over 500 children and adults with special needs.

More power to ’em…it’s really hard to raise money these days and they’ve knocked this one out of the park.

I’ve read lots of articles that slam this Ice Bucket Challenge and the ALS Society for a wide variety of things such as their use of stem cells in their research, their use of animals in their research and drug development, the fact that ALS affects a comparatively low number of people (statistics say somewhere around 20,000 people worldwide have ALS, as opposed to the 584,000+ people who die of cancer each year). Other articles have criticized the challenge for the damage it is doing to overall charitable giving, like this one:

http://qz.com/249649/the-cold-hard-truth-about-the-ice-bucket-challenge/

The law of “charitable cannibalism” says that every dollar donated to one organization is a dollar lost to another, which makes me wonder if we are going to feel the effects of the Ice Bucket Challenge this holiday season, when folks who donated because they wanted to be a part of the social media frenzy don’t have any more charitable dollars left to donate this year and organizations like Christmas Charities feel the pinch, or when there isn’t enough food donated for Thanksgiving food drives because people blew their charitable giving budget with one dump of a bucket.

I thought this thing was getting out of hand when I saw kindergarten kids dumping ice water on their heads. Is a 6-year-old really going to write a check to the ALS Society or understand what their parents are doing whey they write theirs? Or are they just excited to put a silly video on mom’s Facebook page? But I decided it was completely out of hand when people started challenging me. Here’s why…

If you know me well enough to challenge me to dump ice water on my head, then you know me well enough to know this…Alan and I created a non-profit in 2006 and have spent the past eight years working as volunteers and donors on its behalf. You should also know that I’m involved in an aggressive campaign of my own – and so is my staff – to raise the $1 million a year that it costs to provide our programs. So, if you know this about me, why would you throw down the gauntlet and put me on the spot on Facebook? Why would I would be willing to use my substantial social media network to help raise money and awareness for a cause other than Merrimack Hall and The Johnny Stallings Arts Program?

Alan and I decided to consolidate our charitable giving in 2006 but we still support many worthy causes to the greatest extent we can…but we give this support quietly and anonymously. Like two weeks ago, when I donated $250 to the American Cancer Society for their annual gala in honor of a friend. Or last year, when I donated $250 to ALS Society in honor of my friend’s son, who died of ALS. So far this year, I’ve donated money to 13 organizations besides Merrimack Hall and will continue to support causes that matter to me with my money and my time…but I won’t do it publicly because that would dilute my ability to raise money for my own organization.

One of the five people who challenged me actually dumped the water on her head in honor of our program, which is so nice and so generous. But I’ve seen the social media backlash when others have done this over the past two weeks…people who have advocated for other charities besides ALS and have then been publicly shamed for “hijacking” an idea that started two years ago and wasn’t initially created to benefit ALS but to benefit charitable giving in general. I don’t want that backlash to come onto my organization and tarnish people’s willingness to donate to us in the future.

I feel that I should use my bully pulpit to raise awareness on behalf of the 400,000 people in the US who have Down syndrome…on behalf of the 1 in 88 children who will receive an autism spectrum diagnosis this year…on behalf of the 20% of Madison County residents who have physical or intellectual disabilities. I will advocate for their inclusion in our communities, for their quality of life, for their health care and education, and for the creation of jobs for them.

I hope that all those people who have done the Ice Bucket Challenge will remember to continue their charitable giving in the future – to whatever organization or cause speaks to them. The challenge shouldn’t be to see how many “likes” you can get…the real challenge to each of us should be that we are good stewards of what we have, that we make informed decisions about how to allocate our charitable giving and that we raise our children in homes where sharing with others is a core value.

This Mom Has The Back-To-School Blues

Emma, 2nd grade; Austin, kindergarten; selling wrapping paper for PTA

Emma, 2nd grade; Austin, kindergarten; selling wrapping paper for PTA

For the past two weeks, my Facebook newsfeed has made me weepy. All those pictures of kids on the first day of school…where did the time go? Wasn’t it yesterday that I was getting my kids ready for the first day of school?

Every year, I couldn’t wait for May, when we would be freed from the rigors of schedules, activities, PTA fund-raisers. But by the 4th of July, I was ready for school to start back, ready for those schedules to create order out of the chaos of a houseful of kids who always needed a snack and an adventure.

My favorite commercial of all time is this one, from Office Depot, as this is totally how I felt when it was time to go back to school

But once your kids are out of school, you realize that it doesn’t matter when Spring Break is or when the holiday break starts. The school calendar no longer defines your life or dominates your plans. Freedom from the school calendar comes with a price…the price of knowing that an important chapter in your life is closed…forever.

Austin's first day of first grade

Austin’s first day of first grade

Once, when my kids were pre-schoolers, I was at a meeting at my church. Child-care was provided so I gratefully checked Austin and Emma in with the sitters and was looking forward to an hour with adults, talking about anything that didn’t involve Power Rangers or Barney.

Seems like last week….

Seems like last week….

I was one of those moms who always made sure my kids looked cute, even if I didn’t, and this must have been one of those days when I should have spent a little longer in front of the mirror because a friend who was older than me, and who’s children were grown, approached me and said, “You look like you could use a hug.”

How I envied her easy elegance! She was so “put together.” She didn’t look haggard or rushed. I imagined that she had started her day with a cup of coffee in her orderly home, maybe reading the paper or returning phone calls and emails in peace and quiet.

My day had started with crying babies and barking dogs, with tugs on my pants leg and little hands reaching up for me every way I turned. I had left my house in a hurry, always late, with dirty dishes still in the sink, with dust so thick on the tables that my kids had been drawing doodles in it, and a pile of laundry sitting by the washer. I was holding on for dear life until naptime, when I hoped I could run the vacuum or dust the furniture or just sit and breathe.

Three-year-old soccer…why?

Three-year-old soccer…why?

My friend took both of my hands in hers, looked me in the eyes and said, “It will get easier.” I was surprised that it was obvious that I was struggling so. She went on to say,

“I promise you…one day you will realize that it really only takes about 15 minutes to load the dishwasher and it really only takes about 30 minutes to go to the grocery store. And when you realize this, you’ll realize that 18 years wasn’t enough.”

I thought, “You’ve lost your mind…18 years is forever” because when you’re knee deep in diapers and school calendars and soccer practices, you can’t see that the finish line is looming closer every day. I didn’t know how right she was until I left my daughter at the University of Georgia and cried all the way back to Huntsville because my friend had nailed it …18 years wasn’t nearly enough.

I will never pack another school lunch again. I will never have to bring snacks to the ball field again. I will never have to attend a teacher conference or sell wrapping paper or sit, shivering, in the bleachers at never-ending hockey games. And it makes me sad to know that part of my life was over so quickly.

Now, don’t get me wrong…there were many days when I wondered why in the world I ever thought it had been a good idea to birth these two tiny people. Here are some of the things I remember thinking or saying…often…when my kids were little:

How can you possibly have so many opinions? You’re two!

How in the name of God did you climb up there/break that/do that? And why?

Where did you learn to do that gross/silly/maddeningly annoying thing?

Why was I so proud when you started speaking in complete sentences before your first birthday and when will you ever shut up?

I’m in the bathroom/on the phone/hiding in the closet and refuse to come out unless you promise to bother your dad for the rest of the night.

I don’t know where your action figure/doll/tricycle is but if you find it, you’ll probably also find your missing shoe/backpack/brother.

Why did I think it was a good idea to invite the entire neighborhood over to play in the sprinkler and what can I tell their mothers that will make them call these heathens back home?

Where the hell is a babysitter when I need one?

Austin in curlers?

Austin in curlers?

But even on the days when I wanted to drop my children off at the nearest fire station, with notes pinned to their clothes that said, “Our mommy has lost it…please help us,” I reminded myself of my friend’s words. Her caution helped me keep my perspective. I could say to myself, “this phase won’t last forever…they will become independent…someday, I’ll have time to myself again.”

So, I pass this advice onto you young moms…

It really does only take a few minutes to do the things that you struggle to complete in a day, 18 years isn’t nearly enough and you will be sad when there are no more first days of school…

For about a week…and then those feelings of wistful nostalgia will be replaced with relief that you’ve already done that. And you look forward to grandchildren…so that you can watch your children play for the other side and struggle just like you did.

My Blog Has Been Published On The Huffington Post!

Today was a thrilling day for me…for the first time, something I’ve written has been published somewhere besides on this blog!

The Huffington Post has picked up my blog and going forward, some of my posts will appear on their web site. For the next few weeks, I plan to re-publish some of the posts that have received the most views but eventually, the two platforms will catch up with each other, I guess. I’m not exactly sure how this will work, as I’ve only been blogging since February so I’m new to the “blogosphere.”

Holy cow…My post made it into The Huffington Post!

Holy cow…My post made it into The Huffington Post!

To the thousands of you from all over the globe (72 countries, but who’s counting?) who have taken the time to read my posts, share them, comment on them and “like” them on social media, I extend my deepest gratitude. And I have a favor to ask…if you have the time and wouldn’t mind, please visit my post at The Huffington Post, even if you’ve already read it.

Clicking on the link and, dare I ask, sharing it through your own social media platforms,  will give this first post the traction it needs to gain a readership on the huge international platform of The Huffington Post.

My motivation in writing, and in encouraging you to share this link, is to increase awareness for people with special needs and to lift the veil of shame that shrouds addiction. Being affiliated with this huge international media outlet offers me the opportunity to take my message of inclusion and acceptance to a larger audience. I hope I won’t disappoint any of you.

Thank you all for your support and encouragement!

http://www.huffingtonpost.com/debra-jenkins/dear-problem-parents-3-ways-you-sabotage-your-child_b_5685881.html

 

What Happened When A Radio Talk Show Host Used The “R” Word On Air

This post contains graphically offensive racial and ethnic slurs that are not a part of my vocabulary…I am using them to illustrate a point. I am deeply offended by the use of words that disparage or diminish any group of people.

Words…what power they have.

The words we choose to use can open a dialogue or shut one down; they can make a friend or an enemy; they can forge a bond or create a divide.

This morning, local radio station owner Michael St. John was hosting his daily morning talk show when he unintentionally ignited a firestorm by his repeated use of the “R” word. I didn’t hear it myself but one of the parents in my program did, and she called me. She was hurt and outraged. She said, “You are our voice…please speak for us” so I called the station to see if Mr. St. John would speak with me. We talked for nearly an hour and I think both of us came away feeling positive.

On-air, Michael relayed the story of two separate events that happened to him yesterday that involved two people with special needs, one who worked in a grocery store and the other at a fast food restaurant. In both instances, the person with special needs was unable to perform the job duties they had been assigned. In both instances, everyone involved had become frustrated – the people with special needs and the customers they were tasked with serving. Michael explained to me that he was trying to ask a general question…is there some sort of governmental mandate that is requiring businesses to hire people with special needs even if they aren’t qualified for the jobs?

I should mention here that Michael’s radio station is a conservative talk station, which helped me make sense of his “big government interference” theory. I should also mention that there is no governmental mandate to hire people with special needs and that I strongly encourage businesses to give jobs to people with special needs when they can. We have two employees with special needs who make valuable contributions to our organization each day.

In both of these instances, the person with special needs had difficulty making appropriate change for a purchase. Michael wondered why they were put in the position of operating the cash register if they weren’t skilled enough to do so, which is a valid question. Personally, I think the inability of some fast food workers to make change has more to do with our failing school system and our minimum wage than it does with having special needs but that’s a political ball of worms that I don’t care to open in my blog.

People didn’t hear Michael’s question or understand his point because all they heard was his choice of words…retardedretardretarded afflictions…and his repeated use of “them” and “those people.”

When I asked him about his use of these words, he was adamant in his intention that he used these words to describe the diagnosis of the person and did not mean to cast aspersions on them. And I was stunned to hear that Michael actually has a step-daughter with an intellectual disability. Turns out, Michael is not offended by the “R” word as a parent and did not seem to be aware that its use is no longer deemed appropriate.

I wondered how a person – especially one who has a family member with a disability – could be so oblivious to the fact that the “R” word is no longer acceptable but I reminded myself that he lives in a small community in North Alabama, which could explain a lot. Rednecks can be slow to catch onto trends.

Ouch…that stings because I, too am a redneck from North Alabama.

When I tried to explain to him that the “R” word is inflammatory and negative, he was a bit defensive in his stance that you can’t eliminate a word from the dictionary just because some people find it offensive.

Here is one thing Michael said to me (paraphrased):

People with retarded afflictions shouldn’t be put in jobs that don’t match their skill set.

So I asked him to substitute other offensive words in this sentence and see if he thought it would be acceptable to say them live on the radio, like this:

Faggots/niggers/chinks/kikes/dagos/wet backs/rag heads/crackers shouldn’t be put in jobs that don’t match their skill set.

I think a “lightbulb” went off for Michael.

The surprising thing was that the longer we talked, the more I liked Michael, even though I was primed to take his head off. He truly didn’t intend to offend people with special needs or their families. He truly intended to simply ask what he thinks is a valid question. He is truly grateful for the job his step-daughter has and knows that she takes pride in having a job she can do independently and well. He truly wants other people with special needs to have that same employment experience- he doesn’t want them to be placed in jobs that are inappropriate for them because he truly hated to see two people with special needs becoming frustrated when they were unable to be successful in their assigned tasks.

Michael said to me, “When a door slams in your face, a window will open and I think this happened today so that you and I would have this conversation.” He’s promised to issue an apology/clarification on air tomorrow and has invited me to be his guest on his show in September, an invitation I’m happy to accept.

I may not agree with his politics or enjoy conservative talk radio but he’s not a bad guy…he just made very poor word choices. I do the same thing every day when I drop “F” bombs around. There are certainly people who tune me out or become outraged with me because I say “fuck,” even if they agree with my message. So a lightbulb went off for me, too.

Although I’m sure I will continue to drop “F” bombs when I believe they are appropriate and while “fuck” may be offensive to some people, it is an adjective or a verb, not a noun used to disparage someone.

Which brings me back around to words and their power. We have advocacy groups telling us every day that certain words aren’t acceptable, from the NAACP to the LGBTQ. So I am adding my voice to the chorus of voices that are trying to tell our society that we are all more alike than we are different…and not just in matters of race, ethnicity or sexual preference.

It’s not okay to call anyone names, people.

People with special needs are people…they are not just a diagnosis or a stereotype. They are people with feelings and they deserve to be respected, by us and by our words.

The Real Reason It Bothered Me That A Man Said I Was 50

He was just doing his job … waiting on our table at a nice restaurant in San Jose. He didn’t mean to commit such a faux pas or rain on my parade. But I had to wonder if he lived under a rock or had been raised by a pack of wolves because what man (actually, what person) in their right mind would attempt to guess a woman’s age?

I didn’t ask him, “How old do you think I am?” in that fishing-for-a-compliment way that lets people know they are supposed to respond with, “Not a day over 30!”

He just came right out and said: “You’re 50.”

Alan and me at 21

Alan and me at 21

I was having dinner with one of my favorite couples, good friends of mine who are obviously and significantly younger than me. When the waiter was taking our drink orders, he said, “How nice … you guys are having dinner with your mom!”

So I indignantly said, “Did you just say I’m their mother?” which should have been code for him to begin removing his foot from his mouth. He didn’t take the hint and instead said, “Well, yes. I mean, they look 25 and you’re 50” to which I replied, “What the fuck?” which was frankly, all I could think to say.

We all laughed hysterically and I tried to be a good sport, even as I gave him the finger. But seriously, dude … who asked you to comment on my age?

Alan and me at 39

Alan and me at 39

Part of me thought it was funny, part of me was insulted and part of me wondered why it mattered either way. I’m not 50 – I’m actually 53 and I’m proud of all my years. I may not love the wrinkles that seem to multiply overnight or the dimples in my thighs but I’ve earned them. The scars that zigzag across my abdomen from C-sections and intestinal surgeries are proof that I’m strong and tough. The crinkles around my eyes are proof that I’ve smiled and laughed a lot. The deep lines in my forehead are proof that Botox doesn’t really work.

 

See my forehead? Botox doesn’t work.

So why should I care that some stranger told me it was obvious that I was 50? At least he guessed younger than I actually am. Maybe I should schedule a follow-up visit with the plastic surgeon who performed eyelid surgery on me a few years back and tell him that he was right when he told me that lifting baggy eyelids wouldn’t be enough.

Left: Before my medically necessary eye surgery. Right: After.

I know what you’re thinking now: that I’m one of those women who turn 50 and heads  straight to the plastic surgeon. But that surgery was medically necessary because my eyelids were so droopy I literally had no peripheral vision. For real: Blue Cross even paid for it.

I refused the total facelift the doctor recommended, because I’m really not vain. Okay, so maybe I had my boobs lifted back up where they used to be during the same surgery and yeah, that part of the surgery was elective (and Blue Cross adamantly refused to pay for that part) but pregnancy, breastfeeding and gravity had done a number on my boobs. Their perk had left the building ages ago and they kept flopping out of my bra whenever I bent over. In my opinion, fixing that shit was medically necessary.

I’ve had a few other moments like this one in the past few years.

Some of the people with special needs who are my friends and students can be bluntly honest.

I keep a list of the things they say to me because they are hilarious and true.

A few gems:

You shouldn’t wear that dress because it makes your tummy bubble.

Your hair looks weird today.

Those lines on your neck look like a lot of necklaces.

When you hold your arms up, it looks like that thing that hangs under a chicken’s beak.

Then there was the time I told my hairdresser that I wanted to grow my hair longer so I could donate it to Locks to Love. She said, “Honey, they wouldn’t take your hair.”

“What’s wrong with my hair?” I asked her.

I like my hair. It’s thick and shiny and holds a curl. The only issue with my hair is that the older I get, the darker it gets. I don’t have gray hair, but it keeps getting browner. Which is fine (I love brown hair) but I was born a blonde and I would like to stay a blonde, so I highlight it every six weeks.

“There’s nothing wrong with your hair,” she answered. “It’s just so full of bleach that it would fall apart if they tried to make a wig out of it.”

Well … isn’t that special. What I thought was one of my last remaining natural features is actually over-processed straw. Do I look like an aging, bleached blonde strumpet or something? Would people rather be bald than wear a wig made from my hair? Perhaps I could star in a Lifetime Television movie: Roots: My Mini-Series.

My cousin, Ann, and me, circa 1963…I'm the blonde one

My cousin, Ann, and me, circa 1963…I’m the blonde one

This conversation reminded me of the time I tried to adopt a kitten from a local animal rescue organization. They had advertised their desperate need for people to adopt dozens of precious kittens so, in an effort to do my civic duty and to find a friend for my barn cat, I went to their adoption event. As I turned in my application, the agency rep asked me where the kitten would live.

When I told them the kitten would live in my barn – which is heated and cooled and has multiple cat doors and is already inhabited by a 13-year-old cat who has thrived in there – they told me that I wasn’t fit to adopt this kitten.

What will you do with all these kittens if they aren’t adopted, I wondered?

They told me they would have to euthanize them. They would rather kill a kitten than give it to me? Did they look at me and say, “This woman is an aging, bleached-blonde, kitten abuser if I ever saw one“?

I digress … the kitten has nothing to do with the waiter telling me I’m 50.

So, yes. I dye my hair. I’ve had half-medically necessary cosmetic surgery. I visit web sites about non-surgical facelifts and buy useless crap online that is supposed to make me look and feel younger.

I look in the mirror and tell myself that 50 is the new 30, that I still have some swag, that there is still some small measure of “hot” left in me (besides hot flashes, thank you very much, menopause). And then a waiter blows my cover. Because I look every bit of 53 and I shouldn’t care. But I do.

To his credit, the waiter spent the rest of the meal solicitously hovering nearby, replenishing my Budweisers before I could ask (yes, the King of Beers is my preferred beverage and his remark made me very thirsty), bringing more bread and repeatedly asking if we needed anything.

Each time he came to the table, we made jokes … ”Oh, now you’re being nice to me,” and “You must have told the ladies in the kitchen what you did and they advised you to attempt redemption”… and we could tell he was truly embarrassed at his unintentional gaffe.

I bet he’ll never make that mistake again … and just in case, I told him he should never ask a woman when her baby is due unless he is 1,000% sure she’s pregnant, either.

The real reason that his comment bothered me is because when I heard it stated out loud – you’re 50 – I had one of those “life flashing in front of your eyes” moments.

Hearing a stranger say the number made it real, a fact … my life is more than half gone. In a split second, I saw myself as a girl, as a bride, as a new mommy and thought how the years have added up so quickly and now … I’m on the downside of life’s roller coaster.

So when strangers tell me how old I am, they remind me that I’m getting closer to the end of this crazy ride that is my life. And I’d prefer they not do that.

The waiter did redeem himself. At the end of the meal, he brought me a slice of birthday cake, complete with a candle, and said, “Happy 21st Birthday.” I laughed, blew out the candle and made a wish. My wish was that the waiter will turn 50… and develop male pattern baldness and erectile dysfunction.

53 and proud

53 and proud, with my 21st birthday cake from the waiter.