Thursday, February 26, 2009

The Most Joyful Sound in the World

Her name is Tova. And when she laughs, it’s the most joyful sound I’ve ever heard.

Tova is in her fifties, and she has Down syndrome. The first day I began working in her day program, she caught my eye. With over one hundred clients in the program, she stood out. That may be, I think, because Tova speaks with her eyes, and her eyes communicate sadness.

Tova is heavy-set, and has lost all of her hair due to Alopecia. She enters the program daily and doesn’t wish to speak; she makes it known that she is unhappy. Most of the day she is depressed, but it goes up and down. The days she smiles, are the days that make me happiest.

I am really not sure why Tova usually has a miserable attitude, but I can only imagine that it’s a bunch of things together. For one, Tova’s family abandoned her when she was very young. They don’t have much to do with her, and she lives in a group home. Here in her day program, she very often gets lost in the shuffle. Even when there are exciting things happening around her, she will opt to stay in one quiet room and lay her head down on the table.

The one thing that gets Tova excited is money. She earns a dollar every morning as part of her daily allowance, and as soon as you show her that small green piece of paper, no matter what mood she’s in, she’ll smile.

Another thing Tova loves is food. Because she is overweight, she is on a strict diet, but she would do anything for food, and at one point began stealing others’ lunches.

Many people might say that Tova doesn’t get enough attention. That is definitely true. Others would say she needs to lose weight, or needs to be stimulated. Perhaps those things are true, as well. I think, however, that what Tova really needs is love.

These days, I find that if I make conversation with Tova about things like money and food, she’ll talk to me and smile. I’ll usually try and guess what’s in her lunch bag, and it has now become a game we often play. Sometimes, if I find her looking very depressed, I’ll ask her if she got her dollar for the day. Sometimes she won’t respond, but sometimes I’ll see a hint of a smile on her face.

Today, Tova came into my office and complained of congestion. “I want Tylenol,” she told me. “How about a tea,” I asked. She wasn’t convinced.

“Come with me,” I told her. She finally followed me into the kitchen. “Pick out your tea, Tova,” I encouraged. She was silent. “Come on, Tova, this is special tea – the kind that cures all colds!” She shrugged.

“Okay Tova, I’ll choose one for you. Do you want your tea with or without Splenda?” Another shrug.

“I don’t know,” she said. “You choose for me.”

“I’m not the one drinking it, Tova. This is your choice!” I said with a smile.

“No Splenda,” she said.

I handed the hot cup of tea to Tova, and told her to be careful. “This hot water tank is extra hot,” I reminded her.

“Put some cold water in it, please,” she told me. I did.

I walked back to “her room” with her, and placed the cup on the table. The next thing I knew, I was smothered with hugs and kisses. I embraced her back and reminded her that her hugs are the “best ever!”

“Tova, you’re the best!” I said. “You know I love helping you!

And then it happened. A smile, then followed by giggling. And then it came – the best laugh I have EVER heard! It was by far, the most joyful sound in the world.

Wednesday, February 25, 2009

Big, Beautiful, Blue Eyes

I entered her home slightly nervous. I hoped it would be a good experience, and mostly, a fulfilling one – as my new job description just wasn’t doing it for me.

I walked in the door, and her mother greeted me so pleasantly. The house wasn’t very put together; you could tell her mother’s hands were full.

Her older sister came home and demanded her mother’s attention. The baby cried from the other room. Her mother was able to balance the attention so perfectly.

Then, her grandmother came into the house, carrying her. She had a head of soft curls, and big blue eyes. She was small and frail. My eyes met hers, and we just clicked. I stood, and put my hand gently on hers. She held me back.

After the meeting was over, I didn’t want to leave. I walked into the room where she was playing, and saw her bouncing to music on a DVD she was watching. I even caught a smile. I walked up to her and put my hand out. She engaged me immediately and placed her hand into mine. I played peek-a-boo with her; she smiled.

On my way out, I figured I’d try my luck. “Bye-bye,” I said to her, with a smile. Her big blue eyes met mine again, and she lifted her right hand and waved softly. She didn’t know it, and her mother didn’t know it, but that wave made my day.

Later that evening, at the end of my exercise class, the instructor turned off the lights. She advised us to lie down, put our flat on the floor to ground us, and our hands on our abdomens to let it all sink in. “Think of something you did today,” she started to say. “Something accomplishing. It may be getting up and going to work when you felt like staying in bed. It may even have been trudging out in this weather to come to this class. There is so much negative in our lives, let us focus to the positive for just a few minutes.”

And so I did. I closed my eyes and her image came into view. Her smile. Her perseverance. Her wave.

I held on and didn’t let go, because I learned that something so small can mean something so accomplishing for me.

The other members of the class started to get up and gather their things, but I lay down for just another moment, and held on to those big, beautiful blue eyes.

Thursday, July 31, 2008

"Okay, Beth"

“Take Beth with me? Do they allow that?”

I was at my weekly shiur, talking to a new friend that had just invited me for shabbos. In a short time we had discovered that we shared common ground—the organization I work for. Tzipporah was a sweetheart. She had also been divorced and was now remarried. I had told her it was really nice to see that there would (hopefully) be a light at the end of the tunnel for me, too.

Tzipporah had been working for the organization for years and became very close to Beth, a consumer in her late thirties with Down syndrome. The thought of bringing her away for shabbos with me both excited me yet made me nervous at the same time.

“I would have no problem with that,” Beth’s resident manager had said the next day.

The following morning, Beth came off the bus into program with a smile on her face. I gave her my usual ‘good morning’ and then casually asked her what she was doing for shabbos.

“Tzipporah!” She replied.

I smiled. “And who is taking you there?” I asked.

She pointed straight at me. “You!” she responded.

“Okay, Beth!” I exclaimed.

“Okay, Beth” she repeated.

Apparently, such news travels fast.

I became excited at the thought of spending shabbos with Beth. As a supervisor of her day program, I never get to see her, or any other consumer, away from typical day hours and routine. I also felt privileged to have been given the opportunity to be trusted with Beth, and, of course, to be the one to get to spend a weekend with her.

Thursday night, I became a little nervous. Having Beth in the car with me and traveling from Brooklyn to Long Island was something I’d never done before. It was a huge responsibility on my behalf.

Friday afternoon, I arrived at Beth’s residence three hours before shabbos. Since it only took 30 minutes to get to Tzipporah’s house, we figured that once we arrived, we’d have time to take her for a manicure before shabbos – one of her FAVORITE pastimes!

Beth got into my car and put her feet up on the dashboard. She looked at me and smiled; I smiled back. She was making herself comfortable in my car, and was very relaxed, it seemed. She kept mentioning Tzipporah’s name, obviously excited to be going there for shabbos.

And so, we were on our way. Things were just fine until we hit standstill traffic. One hour had gone by and we still weren’t moving. I wasn’t nervous at this point since shabbos was still two hours away, but I gave Tzipporah a friendly phone call to inform her that we’d be a little bit late. A few more minutes passed by, and I started to see helicopters flying around the area. I turned to Beth. “Do you see all these cars? It’s taking a very long time to get to Tzipporah’s house!”
“So what,” was her response. She still smiled. Her feet remained on my dashboard. She even bounced along to the music in the car, on occasion. “Okay, Beth” she said.

A half hour later, police cars invaded the highway. They began rerouting everybody off the road.

“Look what’s going on,” I pointed out.

Worried that Beth would pick up on my nervousness that just started; I worked hard to remain calm. But Beth showed no worry. She showed no concern. She looked at me and said, “Okay, Beth.”

Once off the highway, we were back where we started, only this time – shabbos was an hour away. Tzipporah calmed me down a lot over the phone. She kept telling me not to worry, giving me alternate routes to her house, and encouraging me that it would be fine because I had an hour, and I was forty minutes away. To me, that was cutting it close. Had I been alone, I would have rerouted myself to a friend or family member. But I wasn’t alone; I had the responsibility of Beth.

“I know it’s taking a long time, Beth. But don’t worry. It’ll be okay,” I told her. I don’t think she realized that I was talking to myself when I told her that. It didn’t matter, because her response was “okay, Beth.”

Driving down some of the side streets, we hit some more traffic. I called Tzipporah in complete apprehension. “Are you SURE we shouldn’t find somewhere else to go?” I asked nervously.

“Don’t worry. You have until shkeyiah,” she assured me.

I looked at Beth. “Okay, Beth” she told me.

Finally, twenty minutes before shabbos began, we began moving fast. I said a silent prayer, and sped through the streets. Not sure where I was going, I had been following my GPS system. I realized I was about to miss a very important turn and so I quickly tried to switch lanes. Now stuck in the middle of a busy intersection, cars were beeping at me, and I could feel my heart beating out my throat.

The familiar sound of sirens became closer and closer, until a police car pulled me off the side of the road. I quickly got out of my car and before he had the chance to speak, I blurted out my story.

“I am a Sabbath observer, and I have a lady with special needs in the car. I only have ten minutes to get where I need to be with her and I am not from this area,” I pleaded with him. I think he sensed the tension in my voice and after looking into my car, he replied, “well, if you have a lady with special needs in your car, you should be driving more carefully.”

I felt stupid and irresponsible. But I truly felt that Hashem was watching over us because I was driving a precious soul with me.

“I am sorry, officer. I am just extremely nervous.” He was understanding, and showed me the right way to go.

When he was gone, I looked at Beth. I was embarrassed, felt foolish, and was so frustrated at this point.

“Are you okay, Beth?” I asked in a small voice.

“Okay, Beth” was her response.

At 8:00 on the dot, we pulled onto Tzipporah’s street. Beth began giggling, now knowing where we were. It didn’t matter that it took three hours, or that we hit uncontrollable traffic. It didn’t matter that we rerouted ourselves a million times, or that we almost missed the z’man. It didn’t even matter that we had an encounter with a police officer. She was just genuinely happy to be there. Nothing else mattered.

We parked the car and I ran in to light candles. We had made it just in time.

After shabbos began, I looked over at Beth. Tzipporah was hugging her. She had a huge smile plastered across her face. When she sat down on the couch, I sat down next to her. I grabbed her in a hug and silently thanked G-d for allowing her to be the passenger in my car during this stressful trip. If not for her, I don’t think we would’ve made it.

Who else would remain so calm during such agonizing stress? I had envisioned, more than once, spending shabbos with Beth on the side of the road.

Beth had a pure neshama. Everything was always “okay.”

Wednesday, July 2, 2008

One Foot In Front Of The Other

The rain came down hard and the wind blew my umbrella so fierce that it flipped inside out. The bus was fifty feet away -- to me, about a thirty second walk; for Miri, much longer.I am a supervisor in a day hab program for adults with special needs. Miri is one of my consumers. Though she is one of 120, I can easily single her out because she never fails to make an impact on me. Everyday, Miri walks with her walker to get where she needs to go. Everyday, she struggles because she takes each step slowly and carefully so that she doesn't fall. Everyday, Miri amazes me because she never gives up.This particular Friday, after Miri finally made it to the bus amidst the violent rain, she realized she needed to use the washroom. "Oh no," came the moans and groans from the bus. "If Miri leaves the bus, we'll NEVER get out of here..."I looked around. Miri's counselor had already left for the day. After all, she had done her job by placing Miri on the bus, and it was a short Friday. Day hab was officially over. In the blink of an eye, I flipped my umbrella back the way it was supposed to be, and helped Miri climb down the stairs. We were instantly hit with a rush of rain as the sky got blacker and blacker. Miri looked anxious as the passengers on the bus just kept on getting more annoyed. She put one step in front of the other, slowly and carefully. With one hand on her walker, and one hand on the umbrella I coaxed her to keep going, but as I peered at her face amidst all the rain, Miri didn't seem to need it. She carried a look of determination; a look of strength I don't think I've ever seen. By this point I was pretty much covered in rain, plodding across the puddles on the street, making sure Miri had adequate head covering. Of course it was difficult, considering the terrential rain that continued to fall, accompanied by strong winds, thunder and lightening. One foot in front of the other, Miri walked. "We're almost there, Miri, you're doing a great job, keep going..." came my voice. She listened, didn't respond, and kept walking. Five minutes went by. Miri didn't give up. Ten minutes later, we made it to the ramp. She carefully walked into the building as I held open the door for her. When we entered the building, she pulled the hood from her jacket off her head and I was able to see a look of relief on Miri's face that soon turned into a smile. That smile seemed to say "I did it!" I walked her to the bathroom to make sure she didn't slip on the floor. The rain continued to fall, so I called for a counselor to bring a wheelchair to get her back on the bus. She zipped through the hallways, Miri sat down, and together they began their journey back to the bus, this time much easier considering she was being wheeled.The bus cheered as Miri got close. As the bus pulled away, I began to walk slowly back toward the building to finish my paperwork. I don't think I noticed that the rain was engulfing me. Instead I was focusing on Miri. How amazing she was, how incredible, to be so strong willed? How happy she had been just to walk independently to the building in strong rain to use the restroom?!If Miri was able to do one foot in front of the other, can't the rest of us? Shouldn't we also be so appreciative of simple things like being able to use the bathroom on our own?May this all be a lesson for us to be so determined, and may one foot in front of the other get us all to where we need to be!

Monday, March 24, 2008


I left Ben's house that last day two and a half years ago.

During my time with Ben, I worked with some other children, as well. Perhaps you will hear about some of them. After my time with Ben was up, I continued to work in the field, too.

I know many of you will be sad to hear that unfortunately, I did not keep in touch with Ben. Although I wanted to very badly, it just didn't pan out. I do still think about him all the time. If he remained in his last residence, he lives not far from me. I've often thought about just popping in for a visit but so much time has gone by; I'd just feel funny at this point.

I have met some very special children throughout the course of my work, but Ben was one of the really special ones. I will never forget him.

Wednesday, March 19, 2008

Last Session

(sorry this has dragged on forever, but I'm finally finding the time to post the end of Ben's story so that I can move on to others. Thank you all for your patience!)

Gift in tow, I arrived to the house. I didn't let it hit me that this was my last session with Ben because OF COURSE I'd keep in touch, and all that....

Ben ran away from me when he saw me, giggling. I chased after him but unfortunately my feet couldn't run as fast as his cute little ones. I walked into his room.

"Hmm....where is Ben? I can't find him!" I said, quite loudly so that Ben would hear. I heard heavy breathing coming from under the table.

"Beeeen, where are you? I am getting sad! I want to play with my Benny!"

I heard giggling. He was so darn cute. How much easier it would be if I could just take him home with me!

I bent down and stuck my head under the table. Louder giggling. "I found you, you silly boy!"

"Silly!" mimicked Ben.

"Come out, silly boy."

More giggling, accompanied by a "no!"

"Okay....I guess Ben doesn't want to play with my puzzles today..."

Well that got him. He crawled out and tried to climb on my lap, as I had situated myself on the chair. " DO want to play with my puzzles!"

I squeezed him tight. I think Ben remained on my lap for a lot of the session. We moved to the floor a couple times too. I spent our last session mostly playing with Ben and getting as much language from him as I could.

The last ten minutes of our session, I sat across from Ben as he did a puzzle from his seat. Rather than placing the puzzle on the table, he had placed it on my lap. So there I was, trying to balance it while writing up my last progress summary notes for Ben Donaldson.

I was deep in thought. Thinking of how I'd miss him. Thankful for how much he has enriched my life. Greatful that he has so much potential for a wonderful life ahead of him. Sad to let him go. Oh, and of course, writing my notes on his overall progress.

I almost didn't notice the tugging on my skirt. When I did, I pretended to ignore him, as I wanted to illicit speech. "Biddy, Biddy," he said, with his cute little voice.

I'll take that, I thought, smiling at him. "What, Ben?"

"Where da truck?" he asked.

I was stunned. I looked down at his puzzle. It was a transportation puzzle with a helicopter, car, train, airplane, boat.... and surely the truck was missing. Embarrassingly enough, I tried not to cry. It was right then, at that moment, when I realized Ben didn't need me anymore. I had done my thing, and now it was time to move on.

Ben had discriminated. Illicited eye contact. Desired recognition. Spoke a sentence.

I looked in my bag, but couldn't find the piece. "It's lost, Ben. But you're right! The truck is missing!" I gave him a hug.

He shrugged his shoulders, and looked at me. I smiled at him.

I finished writing my notes and we walked into the living room. I picked Ben up and hugged him tightly. "I'm not gonna say goodbye," I said to his new mom, and to him too. "It isn't goodbye. We are going to keep in touch."

Now, I have said that to many families, but I really meant it with Ben. I just couldn't imagine never seeing him again, so it had to happen.

I started walking out the door. As it closed behind me, I looked through the living room window. Ben was waving.

I waved back. Then I got into my car, and slowly drove away.

In my mind I thought, "Goodbye, Ben."