Future Reflections       Winter 2015      BRAILLE

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The Joshua Project

by Christie Goldenberg

Josh Goldenberg stands in a supermarket with a poster about The Joshua Project in the background.From the Editor: Christie Goldenberg is a single parent who works as a special education paraeducator. She is also co-owner and board member of The Joshua Project Foundation. In her spare time she enjoys reading, crafting, writing book reviews, and blogging. Her dream is to write a book about her life experiences and help others to see things differently by changing their perspective. Her son Joshua was honored in 2014 with a Gloria Barron Prize for Young Heroes for his efforts to make Braille more available in stores.

During an ultrasound when I was twelve weeks pregnant, I heard the terrifying words, "I think that your baby's right eye didn't develop." About a month later at my next prenatal appointment, the doctor's concerns were confirmed. It was my decision, they said, whether or not to continue with the pregnancy.

The next couple of weeks were filled with tests and intensive ultrasounds. Every bone was measured to track my baby's growth. The doctors worried that the pregnancy was going wrong, that the baby wasn't developing properly.

Throughout this period of fear and uncertainty, I knew I already had made my decision. No matter what, I was keeping my baby. Other people in my life, however, didn't always feel the way I did. A man at my husband's workplace came up to me and said, "It isn't fair for you to even consider keeping that baby. He is deformed, and his whole life will be difficult. You need to abort, and then you can try again." Unfortunately, he was not the only person who felt it necessary to hand out unsolicited opinions.

The ultrasounds and tests showed that the baby had no problems beyond his undeveloped eye. I did research on the internet to learn what difficulties my child would have to deal with. I was determined to help him live a full life, unlimited by his disability. I looked forward to the day when those people who didn't think my son deserved to be here would eat their words!

When Joshua was born he looked perfect. He always looked as though he just had one eye closed. His left eye was a gorgeous shade of blue. From the beginning he was a happy baby, curious and smart.

But something began to nag at me. "I don't think he is looking at me," I would say to my husband and friends.

"Oh, you're being ridiculous!" they told me. "There's nothing to worry about."

When Joshua was three months old, we went for an appointment at the Jules Stein Eye Institute in Los Angeles. It was time to check on the micro right eye and see if it required any attention. At the end of the long appointment, the news hit us like a Mack truck. Our son was totally blind and had been since birth. His optic nerves had never developed. He had never seen anything and never would. The diagnosis was bilateral microphthalmia.

For a time I felt as if we were moving through Vaseline, hazy and thick. What had happened? We wanted answers. My husband and I each blamed ourselves. We saw a geneticist who ran tests and told us she had no answers for us. Then, a geneticist at Children's Hospital in L.A. said the words that changed my life. "Stop looking for reasons and answers," she told us. "Stop blaming yourselves. It won't do you or your son any good. Accept what is and move on. Treat him like a normal child, and he will be normal. Raise him with the same love and expectations you have for your daughter."

At last I was free!

Now it was time to get down to the work of parenting. I was given the number of a mom who had a blind child. I gave her a call, hoping for advice and encouragement. What I received was a smack of the reality to come. As she described medical appointments, therapies, O&M sessions, Braille lessons, and a host of other challenges, I heard an inner voice screaming, "I can't do this!"

I hung up the phone, hating that mother. How could she say those things to me? Today I realize that, although her delivery left a lot to be desired, she was preparing me for my future and all it would indeed entail.

At only six months old, Josh had his first surgery on his right eye socket. It was followed by another when he was twelve months old. At the age of eighteen months, Josh became very agitated and cranky. Suddenly he began to bang his head against the walls and floor. A few days later, at Children's Hospital, an ocular oncologist informed me that Josh had severe glaucoma in his left eye. The eye would have to be surgically removed right away.

I was shattered. To me, that eye had seemed the only tiny window into my son's soul. I could read his emotions and thoughts by looking into that eye. If they took that eye away, how would I know what he was feeling? I felt I would have nothing to go by. In some ways this loss was even more devastating to me than anything else we had experienced up to that point.

My husband and I were inconsolable. Our pain ran so deep that we couldn't even be together while we waited during Josh's surgery. But it was during Josh's stay at Children's Hospital that we had the major epiphany that began our healing. The morning after the surgery, we ate breakfast at the McDonald's located inside Children's Hospital. As we sat there, we watched dozens of children with many different diseases and disabilities. We saw that their conditions did not define them. They were children first. Their joy and laughter were overwhelming and contagious. As we looked around at their parents, we realized that many of these children might not enjoy a full life span. Some would never even go home from the hospital.

We looked at each other and realized how lucky we truly were. I thought to myself, "This is nothing. I can do this." What if we stopped asking, "Why me?" and "Why him?" Perhaps our job was to understand that this life experience was actually a gift. Change your perception, change your life!

The emotional toll of the surgery set back much of the progress Josh had made with his occupational therapist. For a time he stopped eating and talking. His joyous, easygoing personality seemed to have been marred. The recovery was long and slow for all of us.

After Josh recovered from the effects of the surgery, the next step was to continue the process of getting his prosthetic eyes. Up to this point, Josh had a spacer in his right eye, a clear plastic piece with a tiny handle sticking out. The purpose of the spacer was to expand his eye socket in order to prepare it for the prosthesis, but it made for some tough times. Once at a neighbor's party, a child walked up to Josh, looked at him and yelled out, "AWWW! MONSTER!"

The child ran to his mother, who was standing about twenty feet from me. As he cried to her and pointed, I tried to get her attention. I smiled and waved her over to me. I thought that perhaps I could turn this negative event into a learning moment. The woman looked at me and Josh, turned to her son, and said, "Stay away from him." I couldn't believe what I had heard!

Our next step was to get services for Josh through our school district. We began with a weekly "Mommy and Me" class for parents of special-needs children. I met many parents of children with developmental and/or physical disabilities, but none of them had a blind child. Sometimes the class left me feeling more alone than ever.

Finally I began to work with a specialist from an organization that serves the blind and visually impaired. She answered some of my questions and pointed me to a variety of resources. Nevertheless, she conveyed the message that no matter what I did, I would never get the services Josh required from our school district. She encouraged me to hire an advocate to help me with our IFSP (Individualized Family Service Plan) and to hire an attorney if needed. None of this advice did anything to reduce my stress level! I felt pressured to get ready for a war against an invisible enemy that I hadn't even met.

It didn't take long for me to map out a strategy. I realized that the only way to win was to get these people to know and care about Josh. If they met him, they would fall in love with him and feel compelled to help. Now I bring Josh into all of our meetings, either at the beginning or at the end. He says hello to everyone on the team, gives hugs, offers input, and asks whatever questions are on his mind. His presence helps to remind everyone that he is a person, not a case file.

Fast forward a few years. Josh is six. He is in kindergarten, attending our neighborhood elementary school in a regular classroom. The other kids love him, and he makes friends easily. He has been studying Braille after school for the last two years, and he is a proficient reader. The teacher loves him, and he has a wonderful aide.

One day Josh and I go grocery shopping together. Josh begs me to buy him some triple A batteries, but I see that they are out of stock.  When I tell him, he says, "Well, show me."

I put his hand on the empty space where the battery packages would usually be hanging.  "Where is the Braille, Mommy?" Josh asks.

"Josh, there is no Braille in the grocery store," I explain.

"Why not?! How am I supposed to shop, then? Mommy, make them put Braille up so I can shop, too."

I am perplexed. With everything I have tried to plan for, I never thought about my son grocery shopping. As always, I jump on the internet for answers, but what I see disturbs me greatly. I tell Josh that when he is older and goes shopping by himself, he will have to ask someone who works at the store to take him around and help him pick out his items. Josh doesn't like this answer one bit, and frankly, neither do I.

The next time I visit our local grocery store, I talk to the manager. I ask if he would let me put a few clear Braille labels on the shelves that have Josh's favorite items, i.e., popcorn, waffles, and cookies, so that he can have the experience of shopping when he comes to the store with me. The manager likes the idea and says he will call me later that day. But the phone call is disappointing; the answer is no.

My husband is furious. He goes to another store, part of the same chain, across the street from where he works. The manager at this location is thrilled to help us and agrees to let us put up as many labels as we want to. My husband tells a friend who is a local newscaster. She gets approval to film us for a segment on the evening news, which airs a week later. The response is amazing.

I decide to write to another local grocery store and ask if we could put up labels in their store, too. But meanwhile my husband goes into the first store, and they rudely inform him that all of the Braille labels have been taken down. They will not be allowed back up, by instruction of the corporate office.

We are devastated. Josh cries and keeps asking "Why?”

A few days later I receive an answer from the store I had written to. Not only are they willing to let us put up a few labels, they want to Braille the entire store! The manager calls it “The Joshua Project.” The newscaster comes back out and films another story to follow up on the first one. At this point one of my husband's friends says to us, "You need to turn this into a nonprofit. I will give you the money to get it off the ground. My lawyer will call you to get you started."

Four years later, The Joshua Project Foundation is a 501(c)3 with seven amazing board members. We have put Braille labels into seven stores in locations including Westlake Village, Tarzana, and Santa Barbara, California; as well as Boston and Canada. We have just held our second annual fundraiser at the famous Palm Restaurant in Los Angeles, where seventy-five people ate a four-course, five-star meal, in the dark, under sleepshades.

Our work has gone beyond Braille labels. We have developed Braille aisle markers, Braille maps, and even a talking Braille scanner. It is Josh's dream "to Braille the world, and Target, too!"

Josh is our greatest gift. He teaches everyone valuable life lessons. When people see him or hear about him and feel sorry, I laugh and say, "Don't spend one second feeling sorry for him! He is a superhero. Spend one day with him, and you will know that you are the one who is disabled."

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