A Simple Request

This week, Miss J and M are on Spring Break.  Some of Miss J's friends have boarded planes, bound for ski or sun destinations.  Some have loaded into their minivans for family road trips.  Our family is staying local and I asked Miss J if there was anything special she'd like to do over the break.

It was a simple request:
"Do you think we could go to a movie?" she asked.
"Of course honey!  I'd love to take you to a movie."

Miss J is easy to please.  She doesn't ask for much and she has always been a go-with-the-flow kind of kid.   We'd go to the show.

But then....it occurred to me.  This was going to be a challenge.  With Mr. A working, I wasn't quite sure how I'd get Miss J and M to a movie on my own.  When Mr. A is available, we tag-team parent.  One parent stays with one kid and the other tends to M.  I'd inadvertently backed myself into a bit of a corner: M might sit through the movie, and then again, he might not.  Going solo may mean that I would have to leave, mid-movie, with flailing M and a disappointed Miss J.

My mother guilt set in when I thought back on how many plans for Miss J had fallen through because of her brother; how many times Mr. A or I had promised her things that never came to be. I'd seen the disappointment in her face countless times and I was determined that somehow, we'd to get to the show.

I made my plan:

I called my dear friend, mother to Miss J's best friend (and also a mother parenting a child with special needs) and asked if Miss A would like to join us for the movie. I told her that M would be coming too and that I had no guarantee if he'd make it through the entire film.  I asked if she would be okay with me standing outside the theater door with M and allowed the girls to finish the film.  We both agreed that at nearly ten and eleven, the girls would be fine to sit for the remainder of the film if necessary.

I picked a theater and showtime that I knew had the best chances of being quieter.

The show started at 3:30, which meant I had almost a full day of wide-open time before the movie.  My plan was to run M ragged, hoping that by the time the movie started he'd be too tired to make any noise. I put on his coat and shoes and sent him out to play.

I had purposely brought my largest purse for the movie.  The sole purpose of my gigantic purse was to smuggle in assortment of candies and raisins and other snacks.  You see, M has a hearty appetite and when his mouth is full, he cannot speak:  cannot speak, cannot whine, cannot complain, cannot cry, cannot insist he is done with the show and ready to leave.  As a natural born rule-follower, I appreciate the fact that theaters frown upon this sort of contraband, but desperate times call for desperate measures.  I required a full arsenal of supplies if I was going to make it through a ninety-three minute film.

We arrived at the theater and I was relieved to see it was only about a quarter of the way filled. Even better, not a soul was seated in the rear of the theater.  I placed myself and M in the last row, in two seats that were just inches from the door.  If necessary, a quick escape would be easy.

After giving the girls a short speech on theater etiquette, I allowed them to sit a few rows up from M and I. I told them that if for any reason I had to leave with M, I would be just outside the door.  (Thankfully this is a tiny theater and not a megaplex and the one-door-in, one-door-out made it virtually impossible for the girls to get lost.)

The movie began.  For the first ten minutes, M was captivated and still and did not utter a sound.  Until he remembered the popcorn we'd purchased at the door.

"Popcorn?" he asked, not quite using the "quiet-whisper-voice" we'd discussed before entering the theater.
I hushed him and handed him the bag.

He sat, still and quiet (save for the sound of him munching on his popcorn) for about thirty minutes.

"Drink?"

I produced a juice box from my purse.  That bought me five minutes.

"I'm so hungry," he announced, in an almost-whisper, but not quite.

Thankfully the family sitting three rows in front of me did not turn back in our direction. I reached into my purse and pulled out raisins.  (Raisins in particular are a favorite snack of mine for M. They take longer to chew and they buy me more time when I am bribing silence from my child with food )

I gave him the raisins, one at a time.  When the box was empty, he decided he wanted to crawl into my lap.  It is not the most comfortable sitting arrangement to have a five foot tall, eighty pound seven year old curled in a ball in your lap, but I was hoping that with his full belly, he'd drift off to sleep.  His body stilled and relaxed.  His breath was deep and even.  I could no longer feel my arms or legs, but I was grateful for his silence.

Fifteen minutes later, he stirred and happily  (and not in a whisper) announced,
"All done.  Let's go home now, Mama!"
This time, the family seated three rows in front of us did turn around to catch a curious glance at the child who wanted to leave just as it was getting really good.

We were in the home stretch. There were mere minutes left in the movie and  I was determined that we'd finish the film. (What I was trying to prove to myself, I am not sure.)

I pulled out the Holy Grail of snacks.  Reese Pieces.   These (and M&M's) are my secret weapon, my trump card.  The one thing I can use to get M to do just about anything.

I handed him the box.  Silence from M.  A slight exhale from me.

The movie finally ended.  I was able to keep my promise to Miss J.  She was happy to see the movie and the entire experience was bumped up a notch because she could bring a friend.  M made it through the movie and called surprisingly little attention to himself. I was working so hard at keeping M quiet that I can't really tell you what happened in the film, but in the grand scheme of our adventure, that is what matters the least.

And as I suspected, after a bag of popcorn, a box of raisins and a jumbo box of Reese's Pieces and a juice box, M had little interest in his dinner.  And as a bonus, he didn't throw up. (Which I had absolutely expected.)

We did it.

Bursting the Bubble: Part III

We had all the pieces in place.  The Family Resource Center had staff, had a building and had some seed money for programs.  We had ideas.

The center didn't become the overnight bustling hub of activity as I had hoped. In my green mind, I had imagined we would fling open the center doors and we'd be bursting at the seams.  In the beginning, the neighborhood was more interested in the free snacks we offered than the free programs.  There were days when the center was so eerily quiet that I did wonder if we would be able to stay open. 

Some days I sat and wondered if this was going to work.  

If this was worth all the effort. 

If I was wasting my time.  

There were days I felt so inexperienced and felt that perhaps the community just plain didn't care.  I was scared.

But...slowly, very slowly, a center began to take shape.  People did come. We even had 'regulars'.

On of the goals of the center was to build a bridge between the schools and the neighborhood residents.  Test scores were low in this neighborhood.  Many parents had never been inside their child's school.  Many didn't know how to communicate with school personnel and for many, a language barrier existed.  

I will never forget one little girl, perhaps eight years old, who had asked her teacher how you get AIDS.  Her teacher, well aware of the drugs  and prostitution that existed in the neighborhood, reassured the child, 

"Don't worry honey.  You can't "catch" AIDS. Only people who do bad things get AIDS."

The teacher was unaware that this scared little girl was being raised by a single mother who was HIV positive.

In the infancy of the center, we started and afterschool homework program where we provided tutoring, free of charge.  A woman came into the center and asked about the program.  She told me she had five children.  The oldest three were in school.  The fourth child, was severely handicapped.  The fifth was a baby.  

She told me she left school in the eighth grade when she became pregnant with her son.  The boy was now in the fourth grade and she could no longer help him with his school work because it was too hard for her.  

"I'm scared," she told me.  "I'm getting clean." 

I brought her into my office to fill out a registration form.  She picked up a framed photo of me with my parents on my graduation day.

"That your high school graduation?"

"College."

"I never met anyone who went to college."

She set the photo back down on the desk.

She left.  I was unsure if I'd ever see her again.

The next day was dark and drab and it was pouring rain.  Three little faces, soaked to the skin, appeared at the door of the center.  The first three founding members of the Homework Center.  Three little faces who showed up every single day we were open.

There was one night I had stayed well into the night working on things for the center.  My phone rang,

"Why you still there, YMCA Mama?"  (This was my given nick name from this man.)

It was the man who lived with his family across the street from the center. I was confused as to why he was calling me.

The man with the thick Puerto Rican accent continued,

"You always leave by 6pm.  It is ten now.  Are you okay?"

"I have some work to do.  I'm fine."

A few minutes later he knocked on my door.

"You should really get home. You need to be careful here at night.  I'll walk you to your car."

These are experiences that shaped me and changed me.  This is when, at age twenty three, I finally understood the meaning of the word, "community."

I'd finally burst the bubble I had lived in my entire life.

Bursting the Bubble: Part II

I sat at my desk and stared at a wall and wondered how I was supposed to breathe life into the Family Resource Center.  How was I going to turn this vacant-for-seven-years building into an integral, thriving part of this community?  I sat there for the rest of the day.

I sat there for the next three days too.

On the fourth day, I decided to take a walk.  I'd grown up just a few miles from this neighborhood and I'd driven by it dozens of times.  I'd just never driven through it.  I'd never taken a good look at it. Honestly, I had no idea what was here.

It is a geographically small area, only a couple blocks  or so.  The neighborhood is bordered by a small community school on one side and a magnet school on the other.  Children in the neighborhood attend the community school, unless they are selected, by lottery,  to attend the magnet school.  Next to the magnet school is the YMCA.  There are convenience stores and check cashing businesses.  There is a diner type restaurant that serves a variety of food and a very small, intimate restaurant consisting of just a handful of tables that serves up made-from-scratch Puerto Rican food.  There are churches and a soup kitchen.  

The neighborhood demographic is largely southeast Asian and Puerto Rican.  Most residents are at or below the poverty line.  Many are unemployed and receive public assistance.  Most of those who do have work, work at low wage jobs.  Drugs are prevalent.  

During that week when my boss was in Paris, I walked the neighborhood each day.  I'd return the the Center and take out my notebook and jot down ideas.  It was easy to see what the problems were.  Trying to fix them wasn't.  

My boss finally returned and sat down with me.

"It isn't your job to fix anything. You can't do that.  Your job is to find out what the people want and need.  Your job is to help the YMCA build a relationship with the people, with their schools, with their community," she told me. "You can't walk in out of nowhere and presume to know what they need."

"Get to know the people before you do anything," she said.  "Find out what they want, not what you think they need. Don't speak.  Listen." She gave me a list of local community groups and steering committees and dates they met.  She told me to attend the meetings. She told me to get involved with the schools, with the churches, the soup kitchen.

She then told me she hired two Outreach Workers for my team. This made me panic slightly since I had no idea what to do with myself, let alone two new workers.
  

The first woman quit after a week on the job.

The second was a single mother with four children.  She'd been through some difficult times and was  excited about this new job opportunity.  She was calm and quiet and kind.  She'd faced some of the challenges the people in the community were facing and they could relate to her.  She had their immediate respect and I liked her the moment I met her. 

We hired another Outreach Worker to replace the first.  This woman was an accidental find.  She had applied for a different position, but knew immediately she was the perfect for this job.  She was young and fresh and vibrant.  She was full of ideas, talked way too much and had an impossibly positive attitude. She was in the US from Kenya, Africa  studying International Program Development at the local university.  She'd done work with the Peace Corps and other major organizations.

The first time I walked the neighborhood with her, she was shocked.
"This is a poor area?" she asked.
"Yes, " I told her. "One of the poorest in the city."

She told me about children in Kenya who walked to school with pieces of cardboard tied to their feet because they had no shoes.  She spoke of children who could not afford proper clothing and therefor were not allowed to attend school.  She talked about children who went without food and pointed to the soup kitchen and said, "This is not poor."

She'd seen far worse and while she had empathy and compassion, she did not feel sorry for the people living in this area. She spoke her mind and told the people so.  She intrigued them and they adored her.

So there we were.  Three intelligent, creative, compassionate women and one large and inviting building.  Now we were to create a Family Resource Center.

Bursting the Bubble: Part I

I was raised in a town plucked straight from a Norman Rockwell painting.  It was a town with no home mail delivery or trash pick up.  No, for that your parents made you ride your bike to the Post Office to pick up the mail and on Saturday mornings they put you and the weeks' worth of garbage in the back of the truck and you helped them unload it at the town dump. The town still had a milkman who allowed us kids to hitch rides through town on the milk truck.  (This worked out well since our town had no bus.) He was married to the sixth grade teacher. (And the school principal was married to the lady who ran the electric company.) We didn't get cable television until well into my teen yeas.  My high school graduating class was 42.

It was the kind of place where everyone knew each other and had for generations.  The kind of place where your mom was on the PTA and your dad coached soccer or basketball.  It was small and quiet and quaint and I was raised in the bubble of protection small town life provided.

I found life in the bubble to be as boring as hell and wanted out.

In college, I was majoring in Health Science and earning a degree in Health Education.  I was hoping to continue on and earn a Masters in Public Health.  While I was in school, I was working part time for a YMCA After School Program with inner city kids.  My "classroom" was wasn't actually a room at all.  It was a pass-through hall way that connected the main part of the school with the gymnasium. My program only had twelve children in it, not because there wasn't a need  for more families, but because it was all we were licensed for given the use of space we had.  Since it was a common space and not our own space, the supplies I used for the program were locked in the janitor's closet at the end of each day.

I fell instantly in love with my job and with the kids.

Around the time of my graduation, I saw a posting in the YMCA Job Opportunities newsletter that caught my eye.  It was for a Family Resource Director and it was a brand new position, funded through a national Drug Elimination grant.  The Resource Center was in a satellite building in a part of the city that was synonymous with drugs and crime and blight.  The job of the new Director was to find out the needs of the community, create programs to fit those needs, and implement them.

I was now 23 years old and I had work experience and  a college degree in hand.  I my sheltered & naive mind,  I knew everything.  I wrote my first resume and hand delivered it to the YMCA Branch President's desk.

They gave me an interview.  And then a second.  And a third.  Then I got the letter that the job was mine.  I was thrilled!  I called my mom and Mr. A.  I called my friends.  I laughed.  I cried. I celebrated.

And then, I panicked.

I couldn't decide what was more crazy....me applying for the job or the higher ups actually giving it to me.  Working in a small, already established program, with inner city kids was one thing.  Creating a multitude of programs and managing an entire building, staff and budget was another. Why had I not realized this before? What had I gotten myself into?  (Hindsight being everything, I can say this is one of the gifts of working for the YMCA.  As a non-profit, the pay is lousy, but amazing opportunities for growth and life experience are offered for someone as inexperienced and young as I was.)

I showed up for my first day on the job and was given a box of office supplies and filled out a form for my new business cards.  I was taken to my 'new' office.  I had bought myself a smart new outfit and briefcase, which my boss promptly suggested I get rid of.

The building my office was in was entirely mine to create programs for.  The first floor had a large open room that was bright and sunny and overlooked the street through a large picture window.  There were two small offices and a tiny kitchen. The upstairs had another large open room and a smaller room.  There was an office and the backdoor led to a nice green space.

The building had been abandoned for the past seven years and the YMCA had leased it from the city for $1 per year.  Fresh paint and new carpeting brightened the previously dark space and a brightly colored mural of children playing was painted on a large wall in the main area.  The building had great bones and I saw the potential.

The neighborhood where my building was located bore the scars of a community that had fallen on rough times. Vacant properties and lots outnumbered occupied homes and buildings.  The majority of the occupied homes were shabby and in disrepair.  Most businesses had left the area and those that remained struggled to stay afloat.  There were no playgrounds so the children explored the vacant lots and played kickball in the street..  At any hour of the day, drug dealers and prostitutes lingered on street corners, conducting business of their own, passersby pretending not to see.

Across the street was one of the few single family homes in the neighborhood.  The once yellow paint was faded and like the other homes, it was badly in need of repair.  There was a sofa on the front porch and milk crates provided additional makeshift seating in the small front yard.  A radio placed in the open front window blasted salsa music for the young men who always seemed to be working on a car in the driveway. The front door was always open and I would see little children holding bottles of Coca Cola coming and going.  On the railing of the front porch were a row of old shoes.  The shoes served as planters and the flowers offered bright pops of color in an otherwise drab landscape.  It was the first time I had seen such a fun and creative  repurposing of old shoes, many years before the idea showed up on Pintrest.

My building was kitty-corner to an abandoned warehouse.  There was a billboard on the outside that read:  "WARNING!  AIDS and Hepatitis B have not yet been controlled in the X neighborhood."  This dire message was evidenced by the many needles one could expect to find in the vacant lots where the children played and on the street corners where local business was conducted.

This was life, exactly 5.82 miles from where I had grown up.

I sat alone in my building on that first day, unsure of what exactly I should be doing.  I had put my office supplies away neatly and had put framed pictures and a plant on my desk.  Now what? Where do I begin?

My boss stopped by later that afternoon to see how I was settling in.  She then told me she was leaving for Paris the next day for a week and when she returned, we could discuss my plans for the Family Resource Center.

She walked out the door, the lock softly clicking behind her. I spent the remainder of the day listening to Spanish  music and staring at a blank wall.

Fasten Your Seat Belts! Vacations With M.

It has been a while since we've taken a vacation and Mr. A has been pushing for a trip to Disney World.  My parents are also on the Disney bandwagon.  I've been able to put this off for a while now, but it is becoming more difficult to do so.

What mother doesn't want to take her kids to Disney?  What mother doesn't want their children to experience that quintessential right of childhood passage? 

This mother.

It isn't Disney, per se, it is the logistics of getting there.  Twenty hours by car.  Three and a half hours by plane.  Both of which scare the hell out of me.

In the news recently was a story about a family traveling with a toddler who decided, upon take off, to throw a whopper tantrum.  The pilot turned the plane around, headed back to the gate, and the family was asked to leave the aircraft.

This is one of my fears with M.  To M's credit, he is generally a well behaved boy who understands rules and is capable of following them.  Generally.  There are still days that M, out of the blue, will throw one hell of a tantrum. There have been very public meltdowns with M, red faced, screaming and sweaty, laying on the ground with arms and legs flailing.

The worst tantrum yet occurred a few months ago, just after Christmas.  I was in Target with M and he decided he was done and wanted to leave.  I had things I really needed to buy and told M I wasn't quite done and he would just have to wait a few minutes.

He lost it.

He threw his body face down on the floor, which in winter happened to be wonderful mix of dirt, slush and ice.  He screamed and kicked.  He kicked so hard that his shoe fell off.  I tried to pick him up but he willed his legs to go Jell-O and fell to the ground in a heap.

A crowd gathered to watch this special needs seven year old (who by the way, at five feet tall,  is the height of an average thirteen year old.) go batshit crazy in the housewares department of Target.  I am not sure when this became a spectator sport, but I found myself in the center of the ring going head to head with my son, who now made Linda Blair's "Exorcist"character seem like Mary Poppins.  It was hell.  I was so sure the spectators had bets down on how long it would last or if I would eventually snap and beat my child or simply walk out of the store without him.

I felt the stares of strangers burning my skin as I tried to reason with my cognitively delayed seven year old who is so wound up that he is far beyond reason.  I  heard suggestions made under the breath of those whom I do not know and who do not know me, that my son perhaps needs a good spanking and some old fashioned discipline.

It is an unfortunate reality of having a child with special needs.  These are some of the ugly things we as parents have to deal with.  Through the years my skin has grown a bit thicker and I have learned to do my best to tune out the spectators and focus on my child.  I have learned to keep a poker face until I reach the confines of my own home and can lick my wounds in private.

I go home and look at my child, exhausted and sweaty with a face streaked with tears and dirt.  I look at my child who couldn't care less about the scene he just caused and is now happy as can be because he is finally home again.  I look at him and sigh.  What else can I do?

M is a good boy and these tantrums are usually brought on by his fatigue, a change in his routine or an unfamiliar situation. You can expect all three when you are on vacation.

I am terrified to be that family who is asked to get off the plane.  When there is no leniency for a toddler, how can I expect it for a large boy?

There are times when just the logistics of getting through the day are daunting enough.  I cannot even begin to imagine trying to plan the vacation of a lifetime for M and Miss J.   Even the simple act of talking about it with Mr. A makes me a bit nauseated.

How sad is that?  Try to plan a trip to the happiest place on earth and you want to throw up.

Ive told Mr. A that I will at least think about it. There are a lot of ducks to get into a row first.

Once Upon A Time...Part III

o·pus

   [oh-puhs]  

noun, plural o·pus·es 

1.

a musical composition.

2.

one of the compositions of a composer, usually numbered according to the order of publication.

3.

a literary work or composition, as a book: Have you read herlatest opus? Abbreviation:  op.

It was a bright and unseasonably warm Saturday in May, 1998 when the boy and the girl married.  They married in the girl's church, the place where she had grown up and been baptized and confirmed.  Family and friends from all corners of the globe joined them in celebration.

When they returned to their new home together, the began the next chapter in building a life together.  They focused on their careers and saving to buy their first home.  When the weekends came, they found themselves biking and rollerblading and camping.  They visited with friends.  They took vacations and had adventures.  Life was wonderful.

Four years later, life changed again when their first child, a daughter, was born.  She was a beautiful baby, small and round and pink with a full head of jet black hair and blue eyes and beautiful rosebud lips.  She was an intense baby who took in every detail of the world around her. She was a baby who quickly grew bored at home and was happiest when she was taken out to explore her vast new world.  Smiles and laughs came easily and she glided through developmental milestones effortlessly.

Of course her parents swelled with pride each time family and stranger alike commented on this sweet, beautiful, bright, wise baby.  Yes, this child, this being of their creation,  did hang the moon.

Two years later, another baby joined the family.  This one, a son.  This baby was very different from the first. Unlike his sister who came into the world round and pink and noisy, this boy came into the world thin and gray and quiet.  This boy was whisked from his mother's arms by nurses in scrubs and surgical masks to Intensive Care.  This boy lay among a maze of tubes and wires taking uneven, shallow breaths.   Unlike his sister, this boy's face did not register curiosity about his environment and smiles and laughter did not flow easily. Weak and fragile, this boy was like a sick baby bird.

No one said much about this boy.  The boy's parents could read the faces of their family and friends.  They could read the words written in their eyes; words their lips would not speak.  In those earliest days, there was concern for the boy's survival and this knowledge plunged  the parents into depths of unspeakable despair.

Without warning and without permission, life rudely and abruptly changed.

The boy and girl were a lifetime way from the summer of 1990.  Gone were the lazy days spent on sandy beaches and quiet times spent in the cool New Hampshire mountains.  Days spent biking and nights spent dancing were now bygone era.  And even that joyful newness of being young parents, blissful naivete,  seemed untouchably long ago.  Life, thick as fog, pressed down hard on the young family.  The view obscured, they did not know where to go.

Fear became an evil that tested their marriage.  Fear brought sadness.  Sadness brought worry. At times, life seemed illogical and even cruel.


Years passed  (twenty two to be exact.)  since the summer of 1990 and hairlines had thinned and waistlines thickened.  Wrinkles began to carve their way into the landscape of their faces and gray hairs began to sprout. There had been times that both the boy and the girl had questioned how much they could carry and how much further they could continue on.

The boy and the girl still speak of that magical summer of 1990.  Both knew it was a time, impossible to reclaim and lived only once, but still a time they claimed as their own. Life had thrown curve balls, but there was still the hope and joy and possibility on their horizon.

As for the boy and the girl, their story continues.  It reads as a drama and as a medical mystery and at times as a romance and as a comedy.  The pen remains in their hand.

This is their story.
This is their opus.

                                    "Grow old along with me! The best is yet to be"
                                                                             --Robert Browning.

Once Upon A Time...Part II

The summer of 1990 slipped away all to fast for the boy and the girl.  That fall, the boy returned to college and the girl began college.  She would be living two hours away and for the first time since their meeting, the boy and the girl would not be together every day.  Every Friday after her last class, the girl would hop in her car to make the drive to see the boy.  They'd be together until the latest possible moment on Sunday evening when the girl had to get back to school.

Seasons changed, years passed, and the relationship between the boy and the girl continued to grow.  They boy and the girl finished their educations,  got jobs and their own apartments.  The summer of 1990 seemed so far away.  The boy and the girl had grown up.

One day during the summer of 1997, the boy and the girl drove to their favorite seaside town of Newport, Rhode Island.  They walked through the small New England town.  The sat in the warm grass sipping Dell's frozen lemonade at Brenton Point Park. It is a popular spot for the kite fliers and the boy and the girl enjoyed watching the beautiful flashes of color in the sky.  As the sun began to sink into the water, they came to their favorite beach, a tiny inlet tucked quietly away from the tourists.  They sat in the warm sand and dipped their toes in the cold, salty water.  They tossed bread to the seagulls and watched the boats skimming the horizon.

It was then that he turned to her, his knee in the sand, and asked her the question she knew one day would come.  She said yes and he slipped the ring on her finger.

Next:  Part III