Tuesday, March 24, 2015

Full Circle

Last week Caden and I had an amazing opportunity at a Children's Miracle Network Hospitals event held for Walmart to honor a Walmart associate who inspired me. Here was my original description of meeting this associate for the first time a month ago:

I went shopping this weekend for a short sleeved polo shirt for Caden to wear to an upcoming function. Not an easy find in winter and I made it more difficult by wanting a specific shade of blue, with no labels or logos. Knowing I would probably need to make several stops, I left Caden at home with Frank. Eventually I found myself at WalMart and discovered a promising but extremely messy table of spring clothing. Time to dig in.

Next to me was an employee trying to fold and sort a cartful of mismatched items. She was flanked on either side by a pair of women shopping together and speaking over the employee as if she was invisible. One of these women bumped the employee's cart. Though it wasn't her fault, the worker apologized and moved her cart back as much as possible. She then offered her assistance in finding whatever they were looking for but the shopper snapped that she was fine and would "find it myself". Then this shopper met my gaze and rolled her eyes in that way that says "Can you believe what I'm putting up with here?" and that begs for a return nod of sympathy. I thought she was being a little rude so I simply shrugged my shoulders and went back to my shirt search. The pair of shoppers moved on and the employee now noticed me and asked if she could help me in any way. "I'm looking for a blue shirt for my son," I said as I turned to face her.

And only then did I realize that this young worker had Down syndrome. She immediately reached into the mound before me and pulled out not one, but two shirts in different shades of blue and both in the right size, which was some kind of impressive. It was one of those serendipitous moments that seem to happen with this extra chromosome that find me fully and helplessly cognizant that it would happen no other way WHILE it is happening. Of course this particular employee would find the perfect shirt. Of course.

"Thank you," I said, "You're very good at your job."

"I love my job," she replied, "I love to help people. That's why I'm good at it. Customers are always number one to me." She showed me a few other items before I forced myself to walk away so she could get back to her previous task.

I regret to say that I did not catch her name. But major props to WalMart for hiring this fantastic woman. She not only gave me outstanding service but she gave me hope for the future. I can't wait to find an excuse to go back.

Flash forward to last week's CMNH event where I was able to thank the associate, whose name is Brittany, and meet her mother as well. To put some meaning behind why this was such an inspiring moment for me, it is important to understand that there are incredible disparities in employment between Pennsylvanians with and without intellectual disabilities. Those with disabilities are twice as likely to live in poverty as individuals without and only 22% have any kind of employment whether it's full-time or part-time.

Is this Caden's future - unemployment or at most, under-employment? Not if Brittany has anything to say about it. We are indebted to her for her efforts at breaking down barriers and we don't intend on letting those efforts be for naught. Thank you, CMNH, for allowing us this chance to tell Brittany how she inspires us. It was a very emotional and meaningful full circle moment. I think it meant as much to her and her mother as it did to me and Caden. And thanks to Walmart for hiring Brittany and allowing her to shine. Most of all, thank you, Brittany, for your hard work to work hard. The ripple effect of your employment will become a wave to the next generation.


**Caden is wearing the shirt that Brittany helped me select. As if this story can't get any better, wait till I tell you the reason I was buying the shirt!
 

Wednesday, March 4, 2015

The Word - Part Two

As we do on many sunny summer days, one afternoon last year Caden and I were making the rounds on our favorite rides at Hersheypark. Caden decided he wanted to ride the mini pirate ship with no hands and asked me to tape it to show The Tank. After waiting in line, Caden buckled himself into a center seat where I had a direct view of him for taping. I laughed as he excitedly greeted the last few children boarding the ride. Then the ride attendant came by for her inspection of the restraints and realized two brothers needed assistance. I heard two women behind me laughing at the boys' inability to figure out the seat belt.

"Look at them! They're more RETARDED than that Special Ed kid!"

My head whipped around and I willed laser beams to shoot from my eyes. The words came from a very tall blonde that I had noticed behind us in line earlier because she was so striking. "California beach volleyball player" had crossed my mind. She appeared to be the mother of the boys and the second woman, maybe a friend or a sister. This second woman saw my glare and her eyes widened as she recognized me as the mother of "that Special Ed kid". The blonde was oblivious and kept laughing at her boys. I wanted to say something. I needed to say something as Caden's advocate. But dang it, I had promised to tape him with his hands held high and the ride was starting. I turned my attention back to my beautiful, beaming boy and began to tape.



A few seconds later, I felt a hand on my arm. I turned to see the tall blonde. Her face was flushed bright red and she was clearly upset as she spoke. "I'm so, so sorry. I don't know why I said that. I have an uncle with special needs. I can't believe I said that. He would be so disappointed in me." She broke into tears as she continued to say she was sorry over and over. People around us were watching our conversation nervously.

Though still furious, I thanked her for having the guts to approach me and apologize. I told her some people don't do that (see my previous blog post "The Word - Part One") so I did truly appreciate her apology. I wanted to go back to taping Caden but she placed her hand on my arm again. I realized she was trying to hug me. I was in no mood to hug it out but she persisted. I really, really wanted her to stop touching me. "Look," I told her, "Apology accepted. Let's leave it at that."

The ride ended and we both moved on to meet our children. Caden wanted to see his video and I was ticked this woman had messed that up. He wanted to try again on more rides but I had lost my Hersheypark happy. The day seemed ruined. All I could think about as we moved through the crowd was how many other people might be saying horrible things about my child but were out of my ear shot. I didn't want to share him with strangers anymore so we headed home.

The next day was another beautiful sunny day. I was determined to make it up to Caden.  We went back to Hersheypark. He rode all his favorite rides again. I took too many pictures and videos and we had an amazing time. The employees are always fantastic with Caden and the other visitors we met more than made up for the rude blonde from the previous day. One girl on the flying swings said Caden was her favorite thing about the park and asked if he wanted to ride again with her. I watched his mile wide grin as the swings took them up into the air. He was in his glory. He had been in his glory the day before too. I was the one that had let a fun day get away from us. I put my sunglasses on to hide my teary eyes as I proudly resolved to always honor that glory, even if others can't see it.









Tuesday, March 3, 2015

The Word - Part One

One winter afternoon a few years ago found me hurriedly running holiday errands with Caden and The Tank. We planned to attend a Hershey Bears hockey game later that evening to support their special Children's Miracle Network Hospitals night. Unexpectedly, Caden fell asleep in the car between store visits. We opted to take advantage of the surprise nap so he would be fully charged for the hockey game. The Tank suggested we grab takeout somewhere and drive around feeding our bellies while our little prince slumbered away. We decided on a chain restaurant that had recently hosted a fundraising event supporting CMNH. As we pulled into the designated takeout parking space, The Tank volunteered to stay with sleepy head while I picked up our food.

Surprised that the restaurant was so busy at this time of day, I stood next to three college-aged men watching football on the overhead television as they dined at the bar. The pretty bartender brought over my order and took my credit card. The young men next to me suddenly got rowdy about a play on the screen and a certain player that they clearly didn't like. A server walking through the bar area chimed in loudly, "Oh, you mean the guy that looks like a RETARD with Down Syndrome?" They all laughed as the server disappeared into the kitchen.

My face flushed with red hot anger that threatened to spill into tears as I looked outside at my beautiful, snoozing, perfect boy, so blissfully unaware of how his diagnosis had just been used in a horribly demeaning way.  I wanted to grab my credit card and run out of the building but the bartender was already walking back towards me with the receipt.

"Get that man to come back out here - that server that just walked into the kitchen," I told her in a deliberate and controlled tone. "My son has Down syndrome and he is right there!" I pointed out the window but no one dared to look. "Thank god I didn't bring him in here with me to hear what was just said."

Apparently the three football fans had just realized that their meals were fantastic as they lowered their heads and focused soley on their food. The whole place seemed to have quieted or maybe the blood boiling in my head was drowning out all the sound. The bartender returned alone, explaining that she had told the server what I said and he was sorry. Then she smiled and said nothing more.  I realized he had no intention of facing me.

"You mean he's not coming out here to talk to me?" I couldn't believe he was being this cowardly, hiding in the kitchen and not willing to own up to what he had just blurted out so casually in a public place, his work place no less, and leaving his coworker to deal with me instead. "Get your manager," I demanded. I begged my eyes not to cry so I could represent my son coherently and with dignity.

The young manager finally appeared with gift cards in hand and already apologizing. "I'm sorry for what he said. I have a cousin with autism so I understand how that must've felt. He should've known better and I've talked to him." She was sincere and profuse with the apologies but I didn't want to hear it from her. I wanted the server to face me and to see how much his words hurt. But he stayed in the back, gutless.

I expressed my frustration not only at the server's words but also now his lack of accountability for the impact of his words. I shared that we specifically selected this restaurant because they supported CMNH and I would've expected much more compassion and respect from them. It was dissatisfying to be having this conversation with anyone but the server and I felt like they were protecting him. The manager handed me $20 in gift cards and I laughed incredulously. There was no way I was coming back. All I wanted was an apology from the right person but instead I was left irreparably disappointed and heartbroken.

Sickened, I climbed into our car next to my innocent boy and explained to The Tank why I was inside for so long. We were both gutted but I thought we should stick to the original plan of eating dinner while Caden slept and then heading to the hockey game. I had lost my appetite and didn't particularly want to dine on anything from this establishment but I unpacked my salad and placed it on my lap anyway. Almost as if to save me, Caden suddenly woke up and fiercely vomited, several times, everywhere. Especially hard hit was the food as I unsuccessfully tried to use the containers and carryout bag to catch the mess. It was a nightmare but couldn't have summed up any better how the restaurant experience had made me feel. We headed home to heal, in more ways than one.

Once Upon a Time

Once upon a time, I had a blog. I laid down for a nap and woke up 5 years later. Whoa! Wake up, little blog! Time to dust things off around here.

Tuesday, September 14, 2010

Vote for Andrea and Reece's Rainbow!

Caden was fortunate to be born in the United States. He will have access to a quality education, to health care, to a community, to family, to love. He will be able to dream big dreams. But some kids with DS don't draw the long straw. In many countries, children with DS are abandoned in an orphanage. Then around the age of 5, they are transferred to an institution. Some are then chained to their beds, don't go outside, don't know the comfort of a hug. Many will die within 2 years of that transfer. I can't help but look at my son and imagine him living, and dying, like that.

This is why I will be voting in People Magazine's Reader's Choice Hero contest for Andrea Roberts. She has created an organization called Reece's Rainbow, named after her son with DS, to help these children from around the world find their forever families through adoption. Over 300 children are growing up loved, healthy, and happy because of Andrea's work.

Vote here daily until October 8. The $10,000 grand prize in Andrea's hands will literally save lives. I look at Caden and think "There but for the grace of God..."

Thursday, July 22, 2010

Heh heh heh

ksl.com - Boy with Down syndrome solves neighborhood crime

I love this story and can totally see Caden doing something like this one day...

Thursday, July 1, 2010

Caden turns five

No more baby. No more toddler. He is a boy. Caden is excited to be five and says that he is "growing up" with great flourish. I am so proud of him and madly in love.