Wednesday, February 27, 2013

“These Are the Days of Miracle and Wonder” - Paul Simon

Make no mistake; November 2012 was an historic month. The momentous news began on Tuesday, November 6th, and continued over the next several days but it had nothing to do with the election. On that day, my daughter Grace, a 25-year-old adult with Down syndrome, had her annual Individual Support Plan (ISP) Meeting. The meeting has been held each year since she entered the world of adult services and includes staff from the program she attends, a representative from the Massachusetts Department of Developmental Services (DDS), Grace, her mother and myself.

During the meeting, the Career Development Coordinator at her program mentioned the possibility of some leads coming together that could result in a job interview for Grace. We’d been hearing this for a few years so the news was met with cautious optimism at best.

By Thursday, the phone call came: Grace had a job interview scheduled for next Tuesday at a small local chain restaurant to become a lunchtime hostess. The schedule for the position would be 2-3 days per week, 2-3 hours per day. If you listen closely, you can hear the heavenly tones of a host of angels singing. The majority of you can’t hear it; but the few who can know exactly what I’m talking about.

On Friday of that week, while the rest of the country was either rejoicing at the election results, or wringing their hands over what might have been, I found myself driving to work almost being brought to tears thinking about the real possibility of Grace welcoming patrons to a restaurant and showing them to their table. I felt chills when I shared the news with a friend at work.

It’s been 25 years, 8 months, 25 days, and 13 hours since Grace was born. It’s been 25 years, 8 months, 25 days, 12 hours and 40 minutes that we’ve lived with the knowledge of Grace having Down syndrome. Twenty minutes after she was born, the pediatrician we had chosen from a Fort Myers, Florida Yellow Pages advised us that because of Down syndrome, Grace would never walk or talk, and would not live very far into her teenage years. We probably shouldn’t even take her home was his advice.

His three options, in order of his preferences, were 1) put her in an institution where she would be “well cared for”; 2)  put her up for adoption, “there are lots of loving foster parents out there who would accept her into their home,” (a very curious suggestion looking back at it); or 3) “take her home with you”.

We chose Door Number 3. Nostradamus he was not.

Grace not only walks and talks, she slices and dices. She can dance circles around most adults (tap, jazz, she is adept at many) and impresses everyone with her technological know-how, including programming apps on her iPhone5. She is active in a social club, plays sports year round, and has favorite TV shows. Curious about who came in 6th in America’s Next Top Model Cycle 12? Grace knows.

What had been lacking in her life was purpose. I know her purpose in the grand sense; I found mine thanks to her. I mean she lacked her own purpose. All she really wanted was to get up in the morning and go someplace where she could be a contributing member of society. It was such a simple request, yet a very complicated challenge.

How big was this job interview news within our family? Her mother, stepmother and I were ABUZZ since we had heard. We coached Grace with tips on how to interview appropriately, bought nice clothes for the meeting, strategized about the transportation for the day. This was BIG.

The following Tuesday, November 13th, she interviewed for the first real job of her adult life. A few days later Grace was hired to be the lunchtime hostess at the restaurant. Cue the angels again.

A week or so later, I picked Grace up at the end of her first day on the job. I asked how her day was. She began by describing all of the tasks for which she was responsible. After discussing her day, including the best part to her — the discount employee lunch menu — she sat back in her seat very contented. I sensed she was contemplating, replaying her first day on the job. After a few moments, she blurted out, “Today was AWESOME!”

There aren’t many things in life which excite Grace to the point of “awesome”. Accomplishing her goal of employment and earning her own paycheck clearly is one of them. Awesome indeed.

Woody Allen said, “80% of success is showing up.” Grace has been showing up for over 25 years. She is beyond ready to enjoy her next success. This is the chance of a lifetime for her. It’s funny how the seemingly simplest things in life can be the most profound.

 By John Sullivan

Wednesday, February 20, 2013

Kindness of Strangers

My 11 year old son Ryan has ASD. When he was younger, things were a lot harder. We’d usually hit a spot during the day when he’d turn into the Tazmanian Devil if something didn't go his way, and it would take most of the day to recover from that (for both of us).  As I look back, I feel grateful that The Taz doesn't show up as much as he use to and most days are good days.

However, on the morning of Ryan’s 11th birthday, we were visited by the Taz at Dunkin' Donuts because they were out of Ryan’s favorite drink. It was a bad morning. I was trying to quickly remind Ryan about all of the coping skills he’s learned while he defiantly body surfed on the table and yelled out “YOU KNOW THAT’S THE ONLY DRINK I LIKE HERE! FOR CRYING OUT LOUD, MOM! I NEED MY DRINK!” We were getting all kinds of stares and I saw a few people shake their heads in disapproval because I knew we looked like a spoiled brat and a mother who had lost control. After a while, I physically dragged Ryan out of the store and wondered for the millionth time why we couldn't just do a simple task that others probably take for granted.

As we pulled out of the parking lot, a man who had been in the store pulled up next to me and motioned for me to put my window down. I could feel my blood pressure rise.  Against my better judgment, I put my window down. I was ready to hear this man tell me that I was a bad parent, and that Ryan was spoiled and that parents like me were what was wrong with this world. I was ready to take my anger out on this guy. I was going to let him have it. I was going to yell that I’ve been given more than I can handle and he should mind his own business and be grateful he can enter and exit a store without causing a scene. Oh, I was ready. Bring it, Mister.

Instead, the man said “Hey. It looks like you were having a hard time earlier and I just wanted to say hang in there.” I almost couldn’t process his sentence. Hard time. Hang in there. “Well, he has Autism, so …”, I stammered. This kind stranger answered with “Ah, my nephew does too. It’s really hard on my brother. Hang in there.” Hang in there. I couldn’t believe it. I wondered how many other people in the store weren’t judging, but were maybe feeling bad for us and wondering how they could help.

The man pulled away and I looked at Ryan and said “Let’s try this again” and we went back in. He used his coping skills to settle on water for his drink and thanks to the kindness of a stranger, Ryan and I had a nice morning. 

By Mary-Ellen Kramer