Actions Replace Words

Has your life been profoundly touched through a dramatic personal experience of someone you know or love having a disability? Here are a few examples of those who knew words were not enough.

What do you say when a baby has been diagnosed with a disability?

Before Rachal began experiencing her seizures I knew no one with a child that had been diagnosed with a mild or profound disability. When the neurologist from Johns Hopkins University Hospital looked me in the eyes and told me my daughter would be mentally disabled for the rest of her life - because of this devastating brain disease called Infantile Spasms I felt as if I was completely alone in the world. Thoughts of despair ran through my mind. What would become of her? How would I be able to live with her everyday? I was just getting used to being a Mother, the thought of becoming a care giver to a special needs baby was not what I volunteered for. I remember my best friend Denese coming over during a really rough period one day and just held me and together we cried. She did not need to use words. Her touch was powerful enough.

How should you react when you learn someone’s baby is having seizures?

Rachal’s first seizure that I witnessed lasted 30 seconds. I say it this way because she was six weeks old at the time and I do not know when they began I only know when I began noticing them. She was lying between my husband and me on our bed. We were watching JFK. Isn’t it odd how we remember the tiniest details when something devastating happens around us? I remember what I was wearing. What time it was and the exact point in the movie when her tiny body began jumping up off the bed.

It was late and we decided to just pretend it did not happen. We literally closed our eyes that night both lost in our thoughts. The next morning we were met with more seizures. My neighbor and dear friend Linda called me that morning to see what the day held for me. I told her about Rachal’s seizure. I remember Linda quickly getting off the phone with me and within minutes the phone ringing again. It was Rachal’s Pediatrician. He informed me that Linda had called him and he wanted to see Rachal immediately. I will always be grateful for Linda and the active role she played at the beginning of such a wild time in my life.

What can you do when the family is going to the hospital for a lengthy stay?

When we first began going to the hospital, Rachal was six weeks old. I remember having to rush Rachal up to Johns Hopkins for more tests. My Mother handed me a package. I did not open it until I was alone in her room at the hospital. Rachal had been taken for another EEG and I could not bear watching the electros being placed on her again. As I un-wrapped the package a notebook appeared. I remember smiling and slowly opening the front cover. On the first page was a note from my Mother. She told me she loved me. She shared that she would be praying for me through all of this. She asked me to begin journaling my feelings and everything that happened. She promised me that someday it would be a blessing to look back on. She wrote in Bible verses from Psalms and her own personal prayers as well. I filled that journal within months and went on to fill many more. I will always be grateful for that gift. It has been over 13 years and I still look back at where both Rachal and I have come.

No one has the perfect words to convey when a disability touches a families life. Whether the parents knew about the disability while it was still in the womb or just moments after a birth or after a devastating accident later in life - there are no easy words. And sometimes words are not even necessary.

Temporary or Permanent Disabilities

Time and time again I am reminded that my daughter Rachal's unobvious disability is a mixed blessing. I say this with a smile on my face. I smile because it is easier than crying. For 13 years I have been observing society make their first assumption when looking at my daughter and then assume their judgment. Let me explain.

On the outside Rachal appears to be every bit as 'typical' as the next 13 year old. She walks and runs like other children. She has a magnificent smile that lights up a room. She has the largest brown eyes that seem to take everything in around her. She is engaging and loves people from the moment she sees them. But this is where the similarities with other children her age ends.

You see Rachal is mentally around the age of a five to six year old. Due to 1,000's of seizures and a brain disease called Infantile Spasms Rachal's brain never progressed like a 'typical' brain does. Rachal also has ever so slight speech impairment. Her annunciation of words is not crystal clear.

The moment someone begins a conversation with Rachal they immediately realize something is not quite right. When simply easy questions are asked of her she will meet them with an appropriate response. While other more complex questions will really throw her for a loop. Rachal is not mentally mature enough to share that she does not understand the questions that are confusing her.

Rachal has a large capacity for memorized phrases. These phrases are taken from movies or television shows. For example; when Rachal sees someone with a Subway shirt on she will parrot "Subway Eat Fresh" to no one in particular. When a football player gets tackled she will parrot "That's gotta hurt!" taken from the movie Star Wars, when young Luke Skywalker was in the pod race and an opponent wiped out around a bend. We as her family know what she is doing we've been listening to her for years. We are familiar with her never ending reserve of memorized phrases.

Watching society observe, assume and judge Rachal based on her permanent inabilities has often hurt at different times.

A few months ago our family went out to dinner at Carrabba’s in Cape Coral. We were told our wait time would be around 20 minutes. We decided to wait outside along the side of the restaurant for our number to be announced. As we settled in next to the stone wall I was in awe of the peoples reactions around us. See Benjamin our oldest son, had broken his leg and was in a ½ leg cast and using crutches. I watched the reactions of the families around us. Many people smiled at Ben. Some even jokingly asked him what he was doing just before breaking his leg.

“Safe” I thought. They feel it’s save to speak to Benjamin. His disability was temporary nothing permanent about it. Even as Benjamin went to step inside to get drinks with my husband Ray, one man jumped up to hold the doors for him. I watched as society could handle this disability. It was if a temporary one could be dealt with, joked about and compassion could be felt.

Now, while this was happening Rachal has made eye contact with another family and their two beautiful blonde daughters that sat right across from her. The two sisters stared at Rachal. As Rachal began to speak to them about their purses which she thought were beautiful the older girl began to laugh at Rachal. My heart filled with pain. I waited for the parents to intervene on Rachal’s behalf. Surly they realized something was preciously simple about Rachal. Rachal began asking them about school and how they liked it. Rachal’s mental capacity does not put on airs. She is all heart right from the beginning of meeting someone. She just jumps in and begins a friendship. She does not have the shyness that most of us have when meeting someone for the first time. Rachal is Rachal.

I realized that because Rachal looked “typical,” spoke with a speech impairment and was not shy this family could not understand what she was doing. They avoided her comments and eyes at every turn. They could not step outside themselves to allow Rachal’s friendship in.

Within ten minutes they slowly one by one walked away to another side of the sitting area. My heart was breaking. On one side of me Benjamin was joking with total strangers about his temporary basketball mishap that broke his leg, while next to me was another side of society that judged Rachal’s permanent mental disability with a complete lack of understanding, so much so that they walked away.

Temporary or permanent disabilities. Where do you stand? Where does your family stand? Are we teaching our children about diversities that make us precious individuals or just the perfect people? When we see someone with a permanent disability do we immediately stare, label, assume and avoid direct eye contact. Or can we notice, realize and smile with compassion? We all have a choice to make. What will yours be today?

Rachal’s Mamma and the Mammogram

My schedule was packed. My palm pilot said so. My mind was dancing with details. I was cleaning up the morning dishes, wiping down the counters and asking my oldest son, Ben to please take out the garbage when I realized, my schedule runneth over.

“I have a 10:00 mammogram at Cape Coral Hospital today.” I called out to noone in particular. “And I have promised to take Rachal with me to the office.” I threw out this comment in hopes that my husband would come to the rescue and offer to take Rachal during my 10:00 mammogram.

“I’m off to an 11:30 meeting, I have to leave the house by 11:00” My husband mumbled under his breath.

“Hummmmmm.” I said out loud hoping that the disappointment would be conveyed. “I will just have to take her with me then.”

When I can devote my skills full time to Rachal and her special needs my day goes great. But when I need to focus on something, even for a few moments that truly takes my concentration off her, I get nervous that I will not be able to handle it. Rachal was doable – Rachal and the Mammogram were not.

“Let’s go Rachal, Mommy has a doctor’s appointment and I need your help to get me through it.”

I had just helped her get dressed in a darling pink flowered skirt and white sleeveless blouse. She looked adorable with a new short haircut that appeared to make her brown eyes even bigger.

We pulled up to the hospital and I took a deep long breathe before jumping out of the van. I have not had a mammogram in three years. I was not expecting this to be rough I just did not want Rachal to have a break down anytime during the test. I have to believe that every woman imagines herself sneezing her breast off during the critical squeeze time of the test. But the thought of lunging after Rachal was not a pleasant thought either. Would she handle all of this with understanding?

Anything could set her off, the amount of music coming through the speakers, the way another child screams or the way we have to move from one room to another. These examples and 100’s of more could have her rocking slowly in a corner and biting her arm. See Rachal has Autistic tendencies that leave her not understanding the world around her.

We move into the Breast Center with easy. I am signing to Rachal that I need her help and that she looks beautiful this morning. She is smiling and talking in circles
about her summer school program. We use both sign language and verbal cues as forms of communication to help us understand one another. We are asked to wait in a room filled with magazines and chairs. Many other women join us. I watch Rachal’s reaction as she looks at the ladies. A television is on in front of us. A woman cell phone keeps ringing a melody from the Beatles. You say yes, I say no, you say why and I say I don’t know. Hold it together, Rachal please just hold it together I think to myself.

A beautiful woman with shoulder length brown hair walks into the room and calls out “Lisa Cronin Miller”.

Rachal stands up before I realize it and say’s, “Okay mamma the doctors is weady for you, wet’s go.”

I sign “Okay,” to Rachal and we follow the woman down the hall.

We enter another smaller waiting room and she tells me she will be with me in a moment. I am in awe that we have gotten this far and Rachal is still smiling and with me. Nothing seems to be even close to setting her behavioral issues off. I take a deep breath.

“Okay.” The technician says, “Let’s go.”

We enter a small dark room with a table lamp on in the corner. I sign to Rachal to please stand by the door and do not move.

“Do you really want her in here? The technician asks.

It is at this moment I always smile. I smile for many reasons. One is to deliver the news in a way that puts the person at ease. Another is that I know Rachal is watching my every move and my every word. I smile because it’s easier than crying.

“My daughter has special needs,” I slowly being to share. “She really cannot be left alone around the corner in that waiting room without me.”

The woman’s eyes gazes towards Rachal’s. I see the look of kindness take shape.

“No problem, she can stand over here with me.” She says gesturing towards the back of the machine that will squeeze me into a pancake.

As the technician helps me into the vise grip, my mind wonders towards Rachal’s first mammogram. How old will she before she has her first one? How will we ever explain what is happening to her? Will she actually stand there and allow this contraption to immobilize her even for a moment?

“Do not move and hold your breath.” I am told.

I freeze all movement.

Rachal who has not taken her eyes off of me says, “Oh mamma dat is tight, dat gotta hurt, don’t you move mamma.”

The woman and I make eye contact and we begin to giggle.

“Okay Rachal I am not moving, I actually cannot move.” I tell her.

“Dat good mamma, you good listener, I wove you mamma.” She yells out.

“You have a beautiful daughter”, the woman gently says.

“I am blessed to have her.” I say. And I truly believe that. Rachal may not be the easiest young adult to care for but she has me looking at life in such precious ways. I realize I do not have to worry abut her first mammogram or any other test she might have to endure in the future. I will be given the strength and ability to deal with it at that time.

“You’re all finished.” The woman says. “You and your daughter are free to go.”

“Excellent!” I say. “Rachal we did it! You helped me and we are finished.”

“Mamma I did it, I did it mamma, can we get a soda now mamma I wove soda.” Rachal asks over and over again.

“Yes, Rachal let’s go get you a soda.”

We walk out of the hospital hand in hand.

Rachal and the 911 Call

I always carry my cell phone. Always. In this day and age how can I not? I need to be in touch at a moments notice with my children. If I leave the house to run a ten minute errand my mobile is on. If I go out for a meeting that is going to take hours I have my phone on. If I can clear my schedule for a great chick flick movie I have my cell is on. It Is not that I do not trust my children, it’s this world of ours that I have my doubts about. So I leave myself always reachable for them.

My three children know that they have free reign to call me any time- day or night. I live with my phone on silence so there is no concern that the ring will interrupt what I am doing at that time. No meeting, movie or moment that I am tied up in is more important than something my children want or need to ask.

Benjamin is fifteen and understands that I love hearing from him. That any question he wants to ask at that moment is worthy of asking. But he a first born and does not ask questions just to ask them. Rachal is thirteen and is mentally handicap her special needs has her around the age of a five year old. She does not understand the concept of the numbers and the sequencing but when she needs to talk to me Benjamin will call me for her and give her the phone. Joshua is nine years old and loves to call me and ask real important questions like “Mom where are you?” and “Mom when are you coming home?”

With all of that said and my mobile phone on at this very moment I want to share what happened at our home in last month. My husband Ray and I had a portfolio meeting with a builder in the area. This meeting has been on our palm pilots for months. We were looking forward to hearing from the builder and meeting other neighbors in our upcoming development.

“We’re off kids.” I shouted upstairs as I grabbed my hand bag and phone. “My phone is on and we are at the Hilton Garden Inn in Fort Myers.”

Ben came down stairs to give us a hug and listen for any last minute details.

“We are just a bridge away Ben, please call with any questions you might have.” I told him.

“I know Mom, I know.” He said rolling his eyes and smiling slightly.

We made the trip across the Mid Point Bridge with ease. No early evening accidents and not too many red lights delayed our travels. We were actually early to the meeting. We settled into our seats and watched the other men and woman as they made themselves comfortable. Light refreshments were served as well as drinks. It was a lovely affair and I looked eagerly to the sales team and builder to begin speaking.

About 15 minutes into the introductions. I felt something inside of me or rather I heard something inside of me say ‘get in touch with the children”. It was that Mother’s intuition that we all have been given after having these precious peanuts come into our lives. I felt my heart quicken and I reached for my mobile phone.
It was not by my hand bag. I reached around the binder that we were referring to with the building plans and still no phone. I small bit of panic rose inside of me.

“Ray, my phone is gone, I am sure I left it in the van. Can you please get it?” I asked him quietly trying not to sound alarmed.

“The kids are fine.” He said and went back to listening to the speaker.

“No, I mean it, something is wrong I can feel it inside.” I pleaded.

“Okay, Okay but take notes while I am gone this is important stuff.” He said.

I said back in my chair and forced myself to breath. I did not want to make a scene. It was most likely nothing and it will be good to just look at the phone and see that the home number has not appeared.

It seemed like an hour before Ray came back. He slipped into his chair and said, “You might want to gather up your things.”

I grabbed the phone. My face went white and I knew that something was wrong. I immediately left the room to see him following me quickly with our items.

I dialed the home line immediately.

“Mom!” Ben said.

“Honey it’s me. I am so sorry I accidentally left my phone in the van. Please forgive me what’s happening?” I blurted out.

“Mom, Rachal took the cordless phone and locked herself into the bathroom and dialed 911.” Ben explained. “Before I knew what was going on I heard sirens and lots of them. Rachal ran outside and in front of our home and still coming down the street were fire and rescue trucks, and ambulance and a police cruiser.”

“Oh my Lord!” Was all that I could say. “Ben please go on. Is she okay? Are you okay? Where is Joshua?”

“Mom, listen it gets better.” Ben replied. “Rachal ran outside and I ran after her, well not really ran I mean I do have my cast on my leg.” Ben had broken his leg week’s earlier playing basketball. “Then as the EMT’s were getting out of their vehicles Rachal screams out, “Arrest this man, arrest him!” And she is pointing at me! I thought I was going to fall over - it was wild.” Ben says.

“Ben, are you serious? Did you tell them she is special?” I quickly ask.

“Yes, Mom, I told them right away. But then Rachal trips and hurts her leg and begins writhing on the ground like she’s been shot.” Ben goes on. “Mom it was just like all those cop shows she watches. She was literally acting out a part as the EMT’s ran over to her to put ice on her leg, you should have seen it!”

At this point I do not know what to do. I want to scream. I want to kick and I am spitting mad at myself for forgetting my mobile phone in the van. As if having my phone with me would have changed the course of all of this from happening.

“Ben we are on our way home this second.” I say as I am squeezing the phone so hard my knuckles are turning white. “Keep telling me everything that happened.

“Okay, they realize that Rachal is special, that she dialed the number and that me and Joshua are the only ones home. They ask me where you are and I keep trying to call you and they keep calling you but you would not answer your phone.” He says, as I think back to the moment when I knew in my heart something was wrong.

“Ben I am so sorry, truly I am I cannot believe this is happening!” I say as I swallow the lump in my throat. “Ben are you okay.” I know at this point I am going to get an honest answer from Ben. It’s just who he is.

“Yes, Mom I am fine. I can’t wait for you to get home. I know Joshua wants to see you too.” Ben says. “At some point he slowly went back into the home and I haven’t seen him since.”

Joshua is my incredibly sensitive son. He takes everything Rachal does and internalizes them it so deeply that sometimes I actually see the despair on his face.

“Why can’t Rachal be like my friends sisters Mom?” Joshua will ask me.

I smile and ask for the strength to help Joshua to realize the beauty in our family and life with Rachal.

We pull up to the house. I see Ben standing outside. I hear Rachal talking in circle about the events of the evening. I look for Joshua who is quietly playing army men in his room amongst a boat load of Lego’s.

“Hi kids,” I barely get out. “We’re home and I really need to see you each in my arms.” One by one they come and hug me. I swallow back tears as I look at my children. I am thankful that it was not a real emergency that has hurt them in any permanent way.

We all walk upstairs and gather around each other to just sit, talk and compare feelings. Everyone shares. Ben has us now actually laughing at the way Rachal tried to have him arrested. Rachal shares in bits and pieces that her Life Skills Teacher and our friend, Jill Bonnell taught her ‘not to talk to strangers’ and to how to call 911. We are unglued at her simple justification of her actions. Joshua curls up in my lap and silently weeps.
I realize that I am not in control of everything that happens, as much as I want to be. This experience will be in our family’s memories forever. I hope one day that we will all be able to truly laugh about it. Until then I am gratefully for the security in knowing our family loves one another unconditionally.

Making a Decision

The decision was finally made. There was no turning back. We had decided as a family to leave Estero and move to Cape Coral. I think the conflict of indecision is the most taxing on me. It’s that ‘Should I?’ or ‘Shouldn’t I?’ that has me up most nights at 3:00 am tossing and turning and getting up to stare at the moon. For months I have been asking myself was this move right for us, for our two typical sons and for our special needs daughter?

I decided it was time to let Rachal’s Life Skill’s teacher, Jill Bonnell, know that we were leaving Bonita Springs Middle and moving her to a middle school closer to our new home in Cape Coral.

“But there is only six more weeks of school!” everyone said to us.

“Why change her now and put her through all that transition for just six weeks.” My Mother questioned?

“Why not let her take the bus from Cape Coral to Bonita?” One friend asked.

The meaningful suggestions from family and friends were considered as I mapped out the best plan of transition for Rachal.

The mental turmoil of making a change in your typical child’s life is hard enough but when you add to that scenario that the child has special need, well that adds an entirely new heartache. Doubts and never ending questions of am I doing the right thing? Plague me. Fears of ruining her life by taking her out of her environment and confusing her, consumes me.

As I walked in to share the news with Jill I was apprehensive. Jill had been in Rachal’s life all of her 6th grade year and all of her 7th grade year except these six weeks I was cutting off. Was this the right decision? Rachal had fallen in love with Jill. The class and she had such a fabulous rapport. Each of the children had such varying degrees of needs. Jill Bonnell met them wonderfully. Rachal has a new found confidence since coming to this Life Skills class. What was I doing?

The classroom was empty. Except for the art work displayed all over the bulletin boards. The chalk board was full of numbers. I had to smile to myself. Rachal loved numbers and it was Jill that gave her that degree of love. She began with the number 0. Rachal would come home for week and her homework was 0. Just 0. 0 0 0 0 0. 100’s of 0’s. 1,000’s of 0’s. Sometime her 0’s looked like hooks. Sometimes like squished pea pods but you knew she was always trying. It went on the same way with each of the numbers all the way through 9.

Jill was sitting at her desk and came over to greet me. I swallowed a lump in my throat as I began to explain our decision in moving Rachal out for the last six weeks of school. I tried to justify my every thought. I was trying to convince myself as the words tumbled out of my mouth. I remember just deciding to stop talking, to just listen instead of filling the air with my justification.

Jill began to be the ever encourager. She shared how the next six weeks were a wonderful time for Rachal to learn her new environment. That those weeks would enable her be that much more prepared for the 2005 - 2006 school year. She shared how Rachal had touched her life and how she always came bouncing into each day with the biggest smile on her face. She promised she would always stay in touch and we could plan a get together right away to give Rachal something to look forward to.

Indecision. It is the hardest part of making a decision. But as long as I believe in the people around me I can make them confidently and without fear of making a wrong one.

The six weeks were over before any of us knew it. Rachal fell in love, once again with her new Life Skills teacher and made the best of friends with her special classmates. She still mentioned Mrs. Bonnell and her classmates at Bonita but woven within those memories were the new ones she was making.

It’s July now and just weeks before Rachal begins her 8th grade Life Skills class at Trafalgar Middle. I think back to those agonizing sleepless nights when I wondered what I was doing with my life and the life of my children. Everything does seem to work out one way or another doesn’t it? I mean Rachal is weeks away from beginning her final year of middle school. She has a head start on her environment and teacher and classmates just like Jill Bonnell said she would.

The Beginning Of The Workshop

“Hey, look at the Retards,” an eighth grade boy yelled out to his friends nearby.

“Look at me; I look like them,” an insensitive seventh grade girl shouted as she imitated one of the special need students who walked with a limp. I watched them slowly move in on their disabled peers like a pack of wild wolves who were ready to pounce on anything that moved.

“Please God give me the strength not to break down.” I prayed. Tears rolled down my cheeks as I looked around the room at many of the typical students who had stopped dancing to stare, point and make fun of the special needs students who had joined them at the Middle School’s back-to-school dance in Bonita Springs, Florida. Each of the special students attended a Life Skills class and had either a mental, physical or learning disability that kept them from studying with the other students.

“Mamma, Mamma,” Rachal shouted running into the house a week earlier. “A Dance Mamma, a dance is com’n to my school; will you come and dance with me?” I held her in my arms and thanked God that He had brought us this far.

It was April 9, 1992; Gaithersburg, Maryland and Rachal had just been born. Everything about her was perfect and beautiful. Six weeks later our world dramatically turned upside down. Rachal was lying between my husband and me when she began to experience a grand mal seizure; this caused her body to bounce on the bed in a grotesque manner. The next thirty seconds seemed like an eternity.

As the weeks slowly crept by, we began to lose count of the number of seizures Rachal endured. Sometimes they lasted only moments. Other times they would start and stop during a 45-minute period of time. I immediately began a journal that would describe everything happening around Rachal, for example: what she ate, how long she slept, the sounds that woke her, etc. I wanted to try and help determine what was causing these horrible episodes.

I even began videotaping the seizures. At first I thought, “What Mother would ever do this?” But then the doctors began thanking me, explaining that it helped them see what was happening to Rachal during her seizures.

We began visiting pediatricians who could not establish why she was seizing, and hospitals that could not stop the seizures. Finally we went to neurologists who could offer no hope.

“She will be mentally retarded for the rest of her life,” Rachal’s pediatric neurologist from Johns Hopkins Hospital told me. “You need to seriously consider placing her in an institution,” he continued. “Rachal has Infantile Spasms, a degenerative brain disease that is slowly deteriorating the healthy sections of her brain.” He then began to speak about Rachal as if she held no value.

“She will never develop beyond an infant’s mentality. Getting her out of diapers; her walking and communicating with you will not be possible.” And then he finished off his thoughts with, “She will never have a normal childhood.”

I had been raised in a loving Christian home. My relationship with God was always a daily communication of dreams, fears and hopes. Ever since I can remember, my Mother would come into my room to say “Good Night” and sit on the edge of my bed to talk with me about my day. Then she would slowly draw the Sign of the Cross on my forehead. As she walked towards the door she would quietly say, “Talk to Jesus honey, talk to Jesus.” Every night I would do just that. I have always considered Jesus to be my best friend.

It was September 1992. I remember crying out to God as I looked out over the parking lot of the hospital in Baltimore, Maryland. Why God? Why are you putting Rachal through this? She is just six months old. She does not even know what is happening to her. Please God hold her tight….help us to make the right decisions for her life with your guidance. And please someday let all of this make sense to me.

At the school dance, as the music got louder and the reflection of the strobe lights danced around the room I did not get angry. I saw fear and ignorance in the faces of these typical students. I saw a society of youth who had not been taught compassion or empathy towards those who were different from them. Did they realize no one volunteers to be disabled; that it happens at birth or a later time in a person’s life due to unforeseen circumstances? Did these typical sixth, seventh and eighth grade students realize that they were sharing a dance floor with a group of visiting angels (as I affectionately called them); that it takes an entire team of speech, occupational and physical therapists as well as all types of specialists to keep them alive? No, I was not angry; I was inspired.

As I watched the typical middle school students continue to make fun of the special needs students, the thought came to me; they have no idea what life is like, even for one minute - let alone a lifetime, for one of these special-abled kids. They have never had to live without their sight, hearing or speech. They have no compassion because they feel no empathy.

In August of 2003 the inspiration for a technique to educate others began to take shape in my heart. I knew I had found my passion and the reason, after all these years, Rachal had been given to me.

The concept of the Workshop was one that allowed typical, able-bodied people the opportunity to experience what it is like to walk-in-the-shoes, for just a moment in time, and to wrap themselves up in a physical, mental or learning disability; and to discover if it would it touch and change their hearts.

I poured through countless journals that I kept while doctors, therapists and educators had worked with Rachal. I contacted agencies in the Washington, DC and Baltimore, Maryland areas to ensure I was on the right track in conveying the message on disability awareness to the general public.

I met with Jill Bonnell, the Life Skills teacher and John Basel, the Principal at Bonita Spring Middle and embraced their unending enthusiasm and suggestions for the Workshop. Mr. Basel offered me the opportunity to conduct a pilot to assess the Workshop would be received by the sixth, seventh and eighth graders. I was elated! I had three months to put the program together.

I began to imagine what would inspire these students to learn. Knowing that I, myself, am a hands-on learner and one who believes that death can occur by PowerPoint; I had to gain their respect by thinking outside traditional teaching methods. “Show me, don’t tell me” is my motto. I know if a person speaks to me with words only, I begin daydreaming, and many times not able to perform the task. However, if that same person shows me the task with a tangible object and I can participate in the learning experience, I can immediately apply hands-on learning and accomplish the assignment. My goal was to develop a program for typical people – teaching them in a hands-on, show-me manner about people with physical, mental or learning disabilities.

In November of 2003, the Sensitivity Awareness Workshop of Southwest Florida, Inc. had become a business. A Program Description had been created to include our Mission Statement, Goals, Objectives and Scope of Work. Our goal is to create a comprehensive program that touches the lives of these students one heart at a time. I created a Reflective Journal that is given to each Workshop participant which enables them to utilize this new information about people with physical, mental and learning disabilities and apply it immediately to their lives. The journal contains thought-provoking questions that challenge the participants to put into practice what they learned. My favorite page is an Action Commitment that challenges the students to take responsibility in performing “An Act of Kindness” towards someone different from themselves. Once the Act is completed, they sign and date the page and look back on it in years to come. We would provide surveys so each student can share with us what they learned and how their behaviors will change towards those with special abilities.

The pilot workshop began with a group of 40 eighth graders. I shared with them Rachal’s life and had pictures enlarged showing Rachal during her EEG’s and therapy sessions. Also chronicled was Rachal performing everyday activities such as enjoying a slice of pizza and a soda. I wanted them to see Rachal as a person, not Rachal with all the disabilities with which she had been labeled.

I remember being nervous. But from the moment I began to share my heart, many of the students’ hands went into the air to ask me questions. Their questions ranged from the total numbers of seizures Rachal had experienced to how many months she lived in the hospital. As we began to show Rachal as a sixth grader, their fear and ignorance slowly began to disappear. The transformation was powerful. Compassion was being embraced. The students began to accept her because they were provided the opportunity to experience what her life had been like. I emphasized that though this was “Rachal’s Story,” every student with a special ability has a unique story to share.

Next, we needed to teach empathy through the hands-on interactive portion of the Workshop. We offered many different types of physical, mental and learning disabilities. These tasks included: taking a math test with the numbers flipped backwards on the page, to simulate a learning disability; putting a jacket on and playing ball with one arm tied behind their back, to simulate a Gross Motor disability; tying a sneaker and unbuttoning a button without using their thumbs, to emphasize a Fine Motor disability; taking away their sight and asking them to put shaped pieces together, to simulate a Visual impairment. Time and time again, we challenged each student to step outside his or her natural abilities they take for granted every day and imagine what life would be like without that ability.

As the first Workshop came to an end, we all gathered around the room to discuss what we had learned. I noticed one student with his head hanging over his lap quietly crying. I remember looking at him for a moment and wondering what happened to him, but I had 39 other students who were asking questions and who were ready to share. Then this boy raised his hand. I called on him and asked him if he was okay. With tears rolling down his face he began to speak. He said he was crying because all his life he had made fun of those who were handicapped. He had called them retards and laughed at them. He went on to say that he was sorry and what he had learned during the Workshop would change his life forever.

All of the students and teachers were silent. No one spoke. Each person was lost in his or her own personal convictions. Swallowing the lump in my throat and blinking back my own tears. I slowly explained that each person can forgive themselves for how they had treated those with special needs in the past. This new information they received will allow them, from this point forward, the freedom to have compassion and empathy towards those who are different from them. There was nothing more for me to say. The Workshop had touched the lives of these students one heart at a time.

Diversity and What Makes Us Individuals

Did you ever walk into Barnes and Noble unfocused and just sort of mindlessly begin to browse through the books? Ever deliberately pick up a book because of its cover and begin to examine it? We know nothing about the inside. We are just making assumptions based on the outside cover. Ever size up the book to see how it fits in your hands; large or small, thick or thin? Ever judge the book by its color? People are like books. Ever look at the front cover and begin to make assumptions because of the way the person looks? How many intriguing books have we made eye contact with and immediately judged it based on what we assumed the book was all about and placed it back on the shelf? We have no idea of the treasures that are there before us. Unless a book has been specifically recommended to us, we tend to judge the book by its cover.

First impressions - they are lasting aren’t they? When we walk into a room full of people we immediately begin to size them up, to compare them to ourselves. We note the color of their skin. We consider the size of their body; heavy or thin, short or tall. We compare their physical and mental abilities all within a moment’s notice.

Ever meet someone for the first time and immediately think that you would never get along with them? Ever have the opportunity to get to know them and actually become friends? Ever get the chance to tell them that you assumed all sorts of things about them at first but realized now that you were completely incorrect with your first impressions? We have no idea of the gift of friendship that is before us. Unless a person has specifically been recommended to us, we tend to judge them by their cover.

I believe people want and need to be accepted in every set of circumstances. Whether someone is overweight or underweight, incredible tall or preciously small, brown skinned or white skinned, from Tennessee or Romania. People want to feel acknowledged but at times our own personal assumption of a person keep us from getting to know them on a deeper level.

Let’s consider people with physical, mental and learning disabilities. They have a unique set of medical circumstances that surround them. When we see someone struggling to maneuver about in their wheel chair at the grocery store is our first reaction one of frustration because we have to clear a wider path for them? Or is it making eye contact with them and giving them a smile as you stop and allow them to pass through? No one volunteered to be disabled. It just happened to them at birth or at a later time in their life due to an accident. When we see someone with obvious disabilities what is our first immediate reaction? Is there compassion and empathy that takes place or fear and ignorance?

The character, Atticus Finch in To Kill a Mocking Bird said, “you never really understand a person until you consider things from his point of view - until you climb into his skin and walk around in it.'

When I first read that sentence as a little girl in 7th grade I was mesmerized by his words. What did he mean by them? How could I ever understand what another person’s life was like? You cannot crawl into someone else’s shoes and truly understand them. Or could you?

We have reality shows for every concept under the sun. Why not consider a reality show that allows individuals from one group to exchange places with a person from another diverse group? Have a group of seeing individuals become visually impaired for a week and go through the day to day activities of not being able to use their vision. Have another group bound to a wheelchair for a week and not have use of their legs. What would the reactions be from the participants? What would the viewers learn? Would they immediately understand what life is like for that individual for whose shoes they are walking in?

Inside this Blog Spot I want to meet diversity head on - yet with compassion and empathy.