A Deaf-Blind Mother Battles for Custody for Her Son
Angela C. Orlando
Words: 5,758
[Memoir]

On April 11, 2007, I found myself sitting in front of a Circuit Court Judge about to hear the verdict of whether or not I would be allowed to continue raising my son. There was only one claim made against my ability to be a fit parent: the fact that I am both deaf and blind.

All stories have a back-story, an explanation of how this all started and how it came to be. I was born with no disabilities, and no hint that anything would ever go wrong. But when I was 13 I began losing my hearing.

It started with tinnitus. I thought I was hearing helicopters fly over the house all night long.

Then my parents began complaining that I wasn't listening. They thought I wasn't paying attention to them. "She's just being a teenager," they would say. It was easy to dismiss the problem.

Finally, my parents realized that something was wrong. They took me to an audiologist who confirmed that I had a mild to moderate hearing loss. I was fitted with hearing aids but they didn't help me. The loss continued to progress. By age 16 I was profoundly deaf in both ears. I remember sitting in a big chair in a small exam room, still hooked up to a machine that was showing the inside of my ear. I couldn't hear what the doctor said; I could only see my mother's face as she began sobbing.

At this point they told me I had Usher syndrome. This would be the first in a series of misdiagnoses. Because my brother had Retinitis Pigmentosa (RP), a genetic disease that causes night blindness and loss of peripheral vision, and because of my unexplained hearing loss, the doctors decided I had to have Usher syndrome, which is a rare genetic disorder involving the combination of RP and hearing loss.

When I was 16, I received a cochlear implant (CI). This was back in 1990 when it was still experimental for children to undergo cochlear implant surgery. Insurance wouldn't cover the very expensive procedure. My parents were determined to do what they felt was my only hope. As it turned out, my Grandmother died just one week before my surgery. Her estate helped to pay the bill.

The cochlear implant was an extreme success. By combining the sounds I heard with the CI, and the visual clues from lipreading, I was able to understand oral language.

Only a few months after my surgery I was hit with another blow. My parents noticed that I was running into things and tripping over the dogs. I had trouble seeing at night. They took me to the eye doctor and our fears were confirmed: I had Retinitis Pigmentosa and was gradually going blind.

It was not easy to accept this fate. Still, I felt determined to try. I did the best I could with listening and lipreading. I couldn't drive or play girls' soccer like I wanted, but I had dreams of being a special education teacher. I kept pushing myself to do the best I could and work toward those dreams.

In May 1997, I graduated summa cum laude with triple certification in special education. I wanted to teach children with severe mental and physical disabilities.

I was set on a career track. I never even considered having a family. I never thought I'd find a man willing to marry someone with dual sensory disabilities. But things changed, as they so often do.

I "met" Greg Howard online on a computer chat board in the summer of 1994. Yes, I will admit it. It was a Star Trek forum. I wasn't a die-hard Trekkie, but I enjoyed the show and liked talking about the episodes with other fans.

Greg struck me as so charming and witty. I thought for sure he must be a 75-year-old college professor. But he was just another college student like me. He lived in Maryland. I lived in Ohio. We exchanged emails, spent hours in live chats together, and sent each other presents.

Greg didn't seem shocked by my disabilities. In fact, when he learned I had never seen an episode of The Original Star Trek series because they weren't closed captioned, he set off on a mission to find videos in caption for me to watch. He succeeded, too.

Eventually Greg came to visit me in person. I was shy but after a while we hit it off. Naturally we attended a Star Trek convention together.

It was the start of what I thought was a beautiful relationship. He'd drive to Ohio to visit me once a month. I'd fly to Maryland to spend spring break and summer vacation with him. We were deeply in love.

After I graduated from college, I decided to move to Maryland and live near my boyfriend while looking for a job. The relationship progressed better than the job search. After two years living together we became engaged.

I started my first teaching job just one month before we were married. September 25, 1999, was a dream come true--albeit a dream I never conceived could possibly happen. I was a bride just like any other bride. My deaf-blindness didn't matter.

My career was rocky, but that's another story altogether. Greg and I bought a house in Waldorf, Maryland. We went skiing in Quebec for our honeymoon. And we talked about having children.

Children? Me? How could a deaf-blind person even think of having children? But it felt so right.

We wanted a family. By this time genetic tests had ruled out the diagnosis of Usher syndrome. My new diagnosis was RP with hearing loss of unknown cause. The doctors said there was little risk to the baby. And if our child did have RP or hearing loss, Greg and I knew we would love the baby anyway. Who better to nurture and support a child with a disability than a successful parent with the same disability?

My pregnancy was relatively easy. I craved Taco Bell and sausages, although I never liked either before. I only threw up once from morning sickness. Greg held me while I vomited into the bushes outside one morning. He was so supportive.

I wanted a boy. I've always been more of a tomboy than a girly girl. I thought it would be wonderful to have a son. I was so thrilled when the ultrasound identified my baby as a little boy.

Daniel Howard was born on May 22, 2001. I can never forget my first sight of Daniel. He was purple and slimy and looked like a corpse. I thought I had given birth to a dead baby. But before I could react to such a horrible thought, Daniel opened his tiny mouth and took his first breath of life. Oh the joy! I had actually seen another person--my son--take his first breath of life. I had tears streaming down my face. And just like that Greg and I became parents. Greg was the proudest father in the world that day. He held his tiny son in his arms before I was able to. He proudly showed off his baby to family and friends and took millions of pictures.

The first six months of parenthood were like those of any other parents. Life meant changing diapers, feedings, burpings, and never enough sleep. I stayed home with Daniel while Greg worked.

My disabilities didn't really cause me limitations in being a parent. I could do anything any other parent did. My being deaf-blind was simply not an issue. The real story, however, begins when Daniel was only six months old. This is when I became extremely ill, had to fight to recover everything I had, and learn new ways to be an effective mother to Daniel. This is also when the abuse started.

In December 2001, I rapidly began losing my remaining vision. My father-in-law was my doctor. He was a general practice doctor who, for some odd reason, served as Primary Care Physician for his own family members. At first, he diagnosed me with post-partum depression and Hysterical Blindness.

I knew something very real and serious was happening to me. At the same time my cochlear implant seemed to be failing me. My legs were weak and I couldn't walk without collapsing. My feet and hands became numb. I was in horrible pain--like pins and needles, but so much worse.

By January of 2002 I was completely deaf and blind. I had no way at all to understand what people were saying to me or what was happening to me. I had no feeling in my hands or legs. I couldn't walk. I couldn't even crawl. And I lost 25 pounds in one month. I thought I was dying. The pain was so unbearable that I wanted to die.

My father-in-law finally sent me to a neurologist. After tests confirmed I had severe nerve damage, I was sent to Georgetown University Hospital. I spent eight days in the hospital. They diagnosed me with Guilliame-Barre Syndrome (GBS), a virus that damages nerves in the body and often leaves victims in a coma. They said I was lucky. They caught it fast and I had no lung damage, which is usually a symptom.

Greg and my mother took turns staying with me in the hospital. Since I couldn't understand anyone when they talked to me, I was always very upset. I needed someone with me to help keep me calm during this scary time. My mother-in-law helped by keeping Daniel at her house.

I didn't have lung damage like most people with GBS, but I didn't feel so lucky. The pain was horrible. The complete dual sensory loss and physical paralysis made me feel like I was trapped in my own body. I had no feeling in my hands so I couldn't read tactile sign language. My family couldn't even print letters on my palm. Eventually someone got the idea to print letters on my face. This became our way of communicating for over two years.

I pretty much missed being a parent to Daniel from age six months to eighteen months. I couldn't even take care of myself. My family had to bathe me, dress me, feed me, and lift me onto a potty chair. Daniel learned to walk before I could even stand again.

I was determined to still be "something" to Daniel. During the worst of my illness I would get down on the floor on my back while Daniel played around my face. This was the only part of my body that I could feel. He would put his toys against my cheeks. He liked to put his blocks in my mouth.

When I was a little stronger I could hold him on my lap while we played face games. If he touched my nose I would stick out my tongue. If he pinched my nose I would say, "Beep beep beep" until he let go.

Daniel liked to help feed me. He'd share anything he was eating with me, even sticky candy that had stuff all over it. He "helped" during my home Physical Therapy sessions by handing me more weights to lift.

Once he could walk Daniel loved to push me in my wheelchair. He was too small to see over the chair but that didn't stop him. He would do anything to help take care of his "mamamama."

I had my family taking tons of pictures of Daniel. They took pictures of him eating his first solid foods, pictures of him taking his first steps, pictures of him riding his little push car. People with GBS usually regain their vision. And with these pictures I would be able to see everything I missed.

It was never a thought of "if" I would see again. I knew I would see again. I talked about "when" I could see again, and usually it was about when I could see Daniel again.

It was a crushing blow on July 2, 2002, when I learned I was permanently and completely blind. Greg's words still haunt me today. "You are blind now and forever."

It seems the combination of nerve damage and RP was too much for my eyes. Blood vessels stopped pumping blood to the retina. My eyes had shut down and I would never see again.

How did I get through those dark days? I have no idea. But Daniel helped. I wanted to die. Suddenly I was truly totally deaf and blind. I didn't think my life was worth living.

Daniel did. He never left my side. I was his play buddy. I was the person he shared his food with. I was his Mommy.

He didn't know anything about deaf-blindness. He just knew he needed me. And I needed him too. Together we managed and by the time he was two years old I was again his primary caretaker.

My health had improved by the time I was caring for Daniel on my own. Although I was totally blind, my auditory nerves had healed so the cochlear implant was functioning. I could hear environmental sounds. But without lipreading I could no longer understand speech.

I had regained full use and feeling of my hands so I was able to communicate with tactile fingerspelling and some simple signs. I also taught myself Braille so I could once again read. (My sign name is the sign for "book" but made with two A handshapes. I truly love to read.)

As if deaf-blind wasn't enough, my feet were very damaged by the illness. I have been in physical therapy for years working on strength, flexibility, and balance. I still have no feeling in my feet. That makes it hard to balance because I can't tell where my feet are in relationship to the ground.

I can walk but I look a lot like a drunk penguin when I do so. My leg braces keep my ankles from twisting so I don't fall. I use a forearm crutch for added stability when I walk.

They asked me in court, "How can a deaf-blind person take care of a child?" I answered truthfully. I don't know.

I don't know how other deaf-blind parents manage. I only know how Daniel and I did it. We kind of made things up as we went along. It was trial and error. We stuck with the things that worked.

When Daniel was still a toddler, I found it was easier to keep track of him if he was contained in a relatively small area. We had baby gates on both sides of the living room so he couldn't get out. I didn't have to worry about him running off and getting into trouble.

I tried to keep Daniel close to me and involved in activities. Busy boys are good boys. We would lie down together on the beanbag chair and read books together. Our books are "twin vision" with both Braille and print with pictures.

We played with plastic animals, monster trucks, and superhero action figures. We spent hours with Play-Doh and doing crafts. I taught Daniel how to make tactile pictures by gluing objects to paper or cardboard. We made lots of collages this way and animals with no bake clay. Once these dried I could feel them and marvel over Daniel's wonderful artistic skills.

Since I couldn't see or hear, I had to use my other senses to watch and communicate with Daniel. My sense of touch was extremely important. I can feel what Daniel is doing and make sure he is not into trouble. My hands tell me if his clothes fit right or if his face is messy from eating lunch. I can feel the vibration of his feet as he moves around the house.

Best of all, my hands tell me his emotion. I can feel his smile or his open mouth of excitement. When his lips are closed very tightly I know he's upset about something. Daniel doesn't mind me touching his face. I've been doing it since he was a baby and he's used to it.

My sense of smell helps me too. When he was a baby I could smell when he needed a diaper change. When we were working on potty training, Daniel would hide under the table or behind the couch when he had an accident in his pants. I could track him down with my nose and lead him upstairs to be cleaned up.

One time I was sitting in the living room when I distinctly smelled chocolate. I tracked down the source of the smell and found Daniel behind the couch eating a candy bar. He insisted he found the chocolate back there so it was okay for him to eat it.

I didn't believe him. He said he wasn't lying. "I found the chocolate behind the couch because I put it there!" Nice try, Daniel.

I led him to the kitchen where I used my hands to find what I expected to find. The pantry door was open and the tub of candy on the floor. Daniel had climbed up the shelves and pulled it down, spilling candy all over the floor.

I insisted that Daniel help clean up this mess. I could feel his hands as he picked up the candy and placed it in the container. I could feel the "thump" of the candy as it fell into the plastic tub. And I could feel Daniel's hand brush away from me . . . What was he doing?

By using my hands I discovered that for every piece of candy he put away, he was shoving another piece down his shirt. He had a big bulge of candy in his shirt. He later explained, "I had to hide the candy or Mommy would have taken it away!" He was right about that one.

Although limited, my sense of hearing also helps me keep track of Daniel. I cannot understand speech, but with my CI I can hear environmental sounds. I can hear Daniel play with his toys. I can hear his chatter as he makes his Power Ranger action figures fight the forces of evil. I can hear the TV as he watches movies. I can hear silence, which usually means trouble. Time to find out what Daniel is up to.

I can hear him cry. I can hear him laugh. The latter is my favorite sound in the world.

Daniel and I have always been able to communicate with each other. We have always found a way to make it work. As he becomes older and more mature, we have improved our methods of communication. At first, Daniel used "Show me" to tell me what he wanted. If he wanted a drink, he showed me a cup. If he wanted a snack, he took me to the pantry. If he wanted to play, he brought me a toy.

One time he wanted something while in the bathtub. I could hear him saying the word and knew it started with a "t." "Do you want a towel? Do you want a toy?"

No, that's not what he wanted.

Finally I said, "Show me." Daniel promptly jumped out of the tub. Naked and soaking wet, he led me to his bedroom where he found his little toy turtle. I couldn't really complain about the wet carpet. I had told him to "show me" and he did. The communication was successful.

Later we were able to do choices. I would wave my right hand and say, "Do you want an apple?" and then wave my left hand and say "Or do you want a cookie?"

Daniel would then touch the appropriate hand to indicate his choice. (In this case it would usually be the cookie.) This method could be used with almost anything at all to give him a choice about what he wanted.

Our communication was greatly improved when Daniel learned to sign the words "yes" and "no." Now I could ask questions that he could easily answer.

He also began learning other simple signs. His first sign was "more." This was used to indicate "more cookies," "more play time," and "more pushes on the swing."

Once Daniel began learning to read and write, we could communicate using a mixture of tactile signs, invented spelling, and accurate spelling. Our communication greatly improved and he could tell me long stories about the very hard papers he does in school and the games he plays with his friends.

When he doesn't know how to sign or spell a word, he uses his skill in phonics to sound it out. "Fing" means "things." "Oway" is for "always" and "rexq namel" means "rescue animals." (The title character in "Go, Diego, Go" is an Animal Rescuer.)

Yes, I really do understand what he is trying to say. I've had a lot of practice and we are a good team.

I had found peace in life through being Daniel's mother. I was deaf-blind, and physically impaired. I could no longer work. This was not the life I had wanted. And yet I was able to accept it and move on. Being Daniel's mother made everything else worthwhile.

Well, almost everything.

I wish I could say I had no clue it would happen when I married Greg. That wouldn't be true. There were incidents even before we were married.

I remember going to Disney World with Greg shortly after I graduated from college. It was a business trip for him. He spent his mornings in classes and we toured in the afternoon.

It was hot. He was tired. He didn't like crowds and there was a mix-up with our transportation. And he hit me. He punched me in the arm.

It was utterly shocking and for a short while I was actually afraid of him. But he apologized and had a million excuses. I thought it was a random event--a fluke. It would never happen again.

It did. I almost called off the wedding a month before the big day. We got in a fight at Baskin Robbins. The menu was too small for me to read and I couldn't understand the cashier. I wanted Greg to help me but for some reason that made him angry.

The argument continued after we got home. He went around the house opening doors, pulling out chairs and anything he could find to put obstacles in my path. He wanted me to run into something or trip over something and get hurt.

The cruelty of it shocked me. Yet I believed his excuses and his promises. I didn't want to believe he was an abuser. I married him anyway.

On Christmas Eve 2000, when I was pregnant with Daniel, Greg went on a rampage around the house. He was enraged because he couldn't find the gift he bought his brother. He threw things all over the place, yelled, cursed, and hit me.

He destroyed that Christmas for me. And even though I had a dark bruise on my arm to prove what happened, I didn't do anything. Greg promised to go back on his anti-depressant. It wouldn't happen again.

The abuse was random throughout the first two years of our marriage. Usually he'd get stressed about money, stop taking his medicine, and then something would happen.

After my illness, however, it began to happen more and more often. Did he do it because I was weak? Did he do it because he blamed me for getting sick? Did he do it simply because I was there? I don't know.

Greg didn't beat me up or give me black eyes. He was a "careful abuser." He didn't leave marks where people could see them.

He slapped my head or my hands. He crushed my hands when I made mistakes understanding his signs. He pushed me. He threw things at me. He kicked me.

Sometimes Greg would grab me or yank me around. He shoved me into walls if I was in his way.

He did all sorts of "little" things. But it was still abuse. There was physical abuse, emotional abuse, verbal abuse, and sexual abuse.

The house was a mess. Greg had power tools, motorcycle parts, wood, computer parts, and brewery supplies all over the house. He would leave objects on the floor that I would trip over.

He constantly dropped his t-shirts on the floor and they tangled in my feet as I tried to walk. I tripped over his boots. I slid on his comics and magazines that he left on the floor.

There was little walking space and I could barely get around my own home. I got hurt weekly. This was no environment for a disabled woman . . . or for a young child.

So why did I stay? That's easy to answer. I was terrified I'd lose my son if I tried to leave.

There was an incident one night when Daniel was about eight months old. Greg had given me a bath, dressed me, and put me in bed. He said he needed to go downstairs for a few minutes. I asked him to bring me up a snack.

He didn't come back up for three hours. By then I had fallen asleep. All of a sudden something hit me in the nose and I was roughly yanked across the bed. Greg was furious because I had moved out of the position he left me in. He had thrown a banana at my face and "re-positioned" me. Then he yelled at me that I should have stayed where he put me. He made me feel like a dog.

The next day I told Greg that this kind of behavior had to stop. He couldn't treat me like this. And if he did, I would leave him. Greg told me right then and there that he was taking Daniel and leaving. He said that no one ever threatens him and that I would never see my baby again.

I felt so helpless. I cried and apologized. I begged him not to go. He didn't leave, but he made it clear he would disappear with Daniel if I ever left him. He also said that if Family Services were called in they would put Daniel in a foster home. I couldn't risk calling the police. I was trapped.

My mother, who lived in Ohio, strongly suspected what was going on. She had helped out when I was sick. She had seen Greg mistreat me on numerous occasions.

She let me know I could come to her for help, but I was too afraid. "No judge would ever give a deaf-blind parent custody of a small child." That's what I told her.

I stayed in this abusive environment for fear of losing my son. I eventually realized I had to leave, for Daniel's sake.

It happened in mid-July 2006. Daniel had just returned from a weeklong visit with my family in Ohio. The very next night Greg shoved me into the steps as we came inside the house.

I hit the stairs hurting both legs, bounced back against the wall, and finally fell back down the stairs. I lay crying in a heap at the foot of the stairs. And my five-year-old son came running over saying "Mommy, Mommy, are you okay?"

It happened again the next day. This time Greg crushed my hands because I didn't understand what he was saying. When the pain caused me to fall to the kitchen floor, he roughly yanked me back up to finish what he was saying.

Then he walked away. And there was Daniel . . . "Mommy, are you okay?"

Later that night, Daniel and I were in the backyard running through his Elmo sprinkler. This was a favorite activity at the time. He wanted a cup so he could catch the water. I knew Greg was in the kitchen and told him to ask Daddy to get it for him. Daniel stopped dead in his tracks and signed "no."

It was odd. It almost seemed like Daniel was afraid. I knelt down in front of him right there under the water spray. I "looked" him right in the eye and asked, "Daniel, are you scared of Daddy?"

He said no. Then Daniel said, "Daddy says bad words." I admitted that he does. Greg cusses a lot.

And then Daniel said it, the words that were like daggers through my heart. "Daddy is bad because he hurts you."

That was it. That was my big breaking point. It hurt worse than a beating ever could have.

I suddenly realized that my five-year-old son was being abused too. He wasn't the one being hit. But he was still being abused. He was watching his mother being hurt by his father. I can't even imagine how horrible that must have been for him.

There was only one way I could save him. I had to leave my husband. The next day I sent an email to my mother asking for help. The mission was started.

Many people were involved. We needed to get me out safely with no incident. And we needed to do it right, so that Daniel would not be sent back to live with Greg. I was afraid of the legal system and my chances of winning custody. But I chose to use the legal system to do this.

My parents arrived on August 3, 2006 with a couple of vans and a handful of helpers. We packed as much stuff as we could and hit the road while Greg was at work. He had no idea what was going on. It was the only way to ensure my and Daniel's safety.

I was terrified as we drove away from Maryland. Greg was an angry, violent man. The tiniest things made him explode. I couldn't imagine what this would do to him. I was afraid he'd come after us. I knew he had access to guns.

To be sure of our safety, my mother, Daniel, and I spent four nights at a Women's Shelter in Ohio. Once I had been to court and had a protective order issued against Greg, I was able to go to my parents' house. If Greg came anywhere near us, he would be arrested.

The initial court battle was drawn out and confusing. Maryland and Ohio were arguing over which state had jurisdiction to try the case. I had to testify about the abuse in December in Ohio court. This judge decided that the divorce would be settled in Ohio but custody would be done in Maryland.

The Maryland court scheduled another jurisdiction hearing for April 2007. It looked like this would never go to trial.

That was okay with me. Daniel and I had made such a nice life in Ohio. We lived with my parents. All my family lives in this area. They help me with Daniel or just visit because they like being with us.

Daniel loved starting school. It's the same school I attended as a child. He became involved with lots of activities here, including soccer, ice-skating, swimming and story hour. He was off to a great start with his newest activity, t-ball.

I had never in my life been so content and peaceful. My son was thriving, I was no longer being abused, and every thing felt right. We were all so happy together.

On March 28, 2007, I received a horribly shocking phone call from my lawyer in Maryland. The jurisdiction hearing was off. The judge wanted the custody case over with. We would be going to trial on April 10th.

All my fears came alive again. I had done what I thought was best for my child, and now, with only two weeks to prepare, I would be facing a judge to find out if I could keep Daniel.

We arrived in court on Tuesday, April 10th, expecting a two-hour hearing. Instead we got a full custody trial. It took one and a half days.

Greg and his witnesses testified about why I was an unfit parent. My disability was my only weakness. It was up to me and my witnesses to prove that a deaf-blind person can be a competent parent.

With the help of an interpreter, I testified about my life with Greg and all of the abuse. I told about how I take care of Daniel and the special things we do together. I had truth on my side and that gave me strength.

My witnesses were wonderful as they told about the things they had seen me do with Daniel. There was even a video of me riding a mechanical bull with Daniel at deaf-blind camp in 2005. Some of my witnesses had things to say about Greg, too.

My lawyer was strong and relentless. I think he truly believed in me and it came out as he gave his closing arguments. Would it be enough?

The judge took a ten-minute recess and then came back to give the verdict. He had much to say about parenting and doing what is best for the child. He talked about his respect for people with disabilities. He called me heroic for what I was trying to do despite severe challenges.

I sat there listening to his speech knowing the big decision was about to come. I had no idea, which way he would go. I was terrified. I don't know if I believe in God, but at that moment I prayed that if there were any good force in the world it would give the judge the wisdom to do what was best for Daniel.

And the judge dropped it like a bombshell over my head. "Sole custody of the minor child to the mother."

My interpreter thumped her hands in my fists as if to say "Yes!" In the back of the courtroom my mother began sobbing.

I could only nod my head and sit up straighter in my chair. One word came to my mind. "Right." I had done the right thing by leaving my abusive husband. And it was right that I would be allowed to raise my son. I might be deaf and blind but I am the right parent to love and nourish Daniel.

I remember saying, "No judge would ever give a deaf-blind parent custody of a small child." This one did.

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Angela C. Orlando has returned to school, at Kent State University, taking ASL classes to improve her communication skills before she pursues a master's degree in education. She and her son are well.