Archive for the ‘hearing impaired’ Category

A Christmas Gift from Above


We adopted Dinora from Guatemala at the age of 6 weeks, and I was so thrilled to have a daughter!!!  She came with a variety of diseases common in s 3
rd World Country, scabies, intestinal parasites and malnutrition.  But we loved her and fed her and she blossomed into an adorable baby with big black eyes and shiny black hair.

At the age of six months, it became apparent that Dinora was deaf.  She had not yet started to babble like other babies her age, but she also did not turn to her name, or looked at the dog when she barked, or seem to notice the footsteps of me coming into her bedroom.  She would be laying there awake when I walked in, (and, believe me, I am not light on my fight.)  When she finally would see me, she would startle.  She had not heard me.  The day I knew it for sure was a day she was sitting next to me on the floor while I was doing the dishes.  I accidentally dropped a huge lobster pot I was cleaning and it made a horrendous clang on the floor.  Dinora happily sat there playing, her back to the pan.  She did not startle.  She did not cry.  She did not hear it.

We then made the rounds of the doctors.  She flunked regular hearing tests, and had a brain stem evoked response test.  Her brain did not respond up to 90 decibels.  The doctor informed me that she was severely hearing impaired and that we would try hearing aids to maximize her hearing, although they would not be strong enough for her to hear normally.  They took the impressions for her ear molds.

That evening, our family went for a pre-Christmas visit to a shrine beautifully decorated with Christmas lights.  I was feeling sorry for myself.  I had a two year old son who was legally blind, and now I had an infant daughter who was deaf.

There was a statue of Our Lady of Lourdes surrounded by prayer water and many large candles.  There was also a large display of crutches and wheelchairs of people who had been healed by her.  I helped my son, Francis, who was 2 1/2 years old, light a candle. Because it was almost Christmas, and the only candles he had seen were on a birthday cake, he merrily sang “Happy Birthday Dear Jesus”.  I remember saying a non-de-script prayer, still upset that Dinora was deaf.  I still thanked God,  but was not quite as enthusiastic as usual.

The next morning, the dog barked and Dinora woke up!  I thought it was a coincidence until I started to walk into her room and she turned to smile at me. She had heard my footsteps!  I started talking to her and she started babbling back.  Only a day earlier she had been fitted with ear molds for hearing aids!  I excitedly called the doctor, who agreed to see her that day.  Her hearing was tested and it was normal!  Neither I nor the doctor could believe it.  He said in his 29 years as an ear doctor he had never seen anything like it.  He told me that it had to be an “Christmas miracle from Above”.  The visit the night before to the shrine came to mind.  A miracle HAD occurred, and I was  embarrassed because I had not thanked God more enthusiastically the night before. He had granted me a miracle even though I did not ask for one.

Dinora is now 28 years old and has had perfect hearing ever since that day! And I have lived life with a peaceful,generous heart because I know, without any doubt, that God is with me.

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A Whole New Meaning to Swimming With the Fishes

I have been fortunate in that my mother loved to travel and she often took me and one of my kiddos “along for the ride.”  One of my favorite spots was Discovery Cove, part of Sea World in Orlando.  Discovery Cove offered a make believe coral reef with lots of beautiful fish swimming around and huge stingrays that would swim close and touch you. It was so amazing, and was as close to real snorkeling that I had ever been. With a life jacket, snorkel and mask on, Marie, (my 13 year old daughter who is profoundly deaf and has PTSD) and I spent the day swimming around, amazed at the many varieties of tropical fish. It was like being in another world.  In one spot, there was a glass wall and you could swim next to sharks.  Up until this point in my life, this was as close to real snorkeling, and SHARKS, that I would get! It was awesome!

Near the end of the day, Marie’s medication began to wear off as we had stayed later than I anticipated.  She began to get anxious, but she didn’t want to leave.   I told her one more swim around the coral reef and then we’d head back to the hotel.  As had been happening all day, a stingray came up and touched Marie on her leg.  In fact, she had been petting them for most of the day, calling them her “friends”.  For some reason, this touch was different than the rest.  She became frightened and had a full blown panic attack.  She started SCREAMING her high pitched scream and she was signing (in American sign language,) “The fish is going to eat me!” (Why the fish would think she were any tastier later in the day than earlier, I don’t understand.) To get away from the stingray, she climbed onto my back.  I tried to calm her down, but it was difficult to do sign language while trying to swim with a child on your back, and she was screaming so loud her eyes were shut and she couldn’t see what I was saying anyway!  By this time, we were halfway around the coral reef and as far from the shore as you could possibly get.  Marie decided she was not safe enough on my back because her toes were still in the water,  so she climbed up on my shoulders to get completely out of the water!  Unfortunately, that meant I’d have to sink UNDER the water for her to stay OUT of it.  I started screaming along with her.  (Albeit alternating choking with water and screaming.) She was truly frightened the fish was going to eat her and I was truly frightened I was going to drowned.

They have several life guards there and our dilemma was not hard to miss, with Marie standing upright and me bobbing in and out of the water choking. Because we were so far out, it took the lifeguards what seemed like an eternity to reach us.  When they got to us, Marie refused to let the lifeguards touch her, screaming and kicking at them.  (Good old Post Traumatic Stress Disorder shows up when you least expect it!)  What three of the lifeguards ended up doing was supporting me in the water while she continued to stand on my shoulders and scream. Of course there was a huge crowd of onlookers on the beach, some taking photos.  (We really were quite a sight!) Once on the beach both Marie and I collapsed into the sand.  The life guards asked if we needed to go to the hospital, but I was still breathing and Marie had stopped screaming and was crying quietly, so that meant we had both survived unscathed.  Well, maybe not totally unscathed, I’ve lost my wanderlust  for snorkeling!

The Deaf Leading the Blind: “But I was just TALKING to her…”

My job is a social worker for children who are blind includes coordinating both a summer and winter program for the children with whom we work.  Last winter we went to an indoor water park during February vacation with about twenty-five children who are blind and “legally blind”.  The children had a wonderful time playing in the water park, on the slides, in the wave runner surfing area, and in the pool, as well as participate in the regular activities that we plan, such as playing bingo and dancing.  Getting together is a huge big deal for these children who are mainstreamed into regular classrooms in their neighborhood public schools where they might not ever see another student with a vision impairment.  I began this program twenty two years ago when my oldest son, who is legally blind, was six years old.

The winter program was a huge success!  Most notably for me, it was the first time my fourteen year old daughter who is profoundly deaf wanted to help out a group of younger girls who are blind.  Each girl had their own staff person who amicably allowed Marie to join their group to help with the little girls. Despite the fact that she normally communicates in American Sign Language, she somehow managed to be very sociable and get along well with everyone. Having normally been obsessed with surfing at the wave runner attraction, and being a somewhat selfish young lady, I had expected she would help for a little while, but spend most of her time surfing. However, I was pleasantly amazed that she did not choose her own activity, but spent all of her time in the water park playing with the little girls, helping them on the slides, holding their hands to guide them around the park, showing them where the food was on their plates, and so forth.  She was having a grand time, and the girls all seemed to adore her.

On the last night of this program. Marie was seated at a booth with two of the girls and their staff.  One of the girls all of a sudden started waving her hands wildly in the air. Prone to seizures, her staff person asked her if she was okay.  She said of COURSE she was okay, she was just TALKING to Marie!!  The laughter started at their table and  soon circled around the room as everyone realized what she had said…she was signing to her, of course!!!!

I Don’t Think Alligators Kiss

Yesterday my husband, in a good mood, came into the kitchen, swooped me backwards, and gave me a passionate kiss.  When we had finished, I noticed my 13 year old adopted daughter standing there, mouth gaping open, eyes wide, with a shocked look on her face.  “What was THAT????’ she asked (in American Sign Language.)  “A kiss,” I told her. “No, no”, she signed, “a kiss is a little peck on the lips” she said as she came over and demonstrated one on the dog.  “That is the way you kiss when you really love someone, your husband” I said.  “WOW!  How did you LEARN that?  Can you show ME!?!?!” she signed.   “You don’t learn it, you just feel it.  It is natural when you love someone,” I explained to her.  “I’m going to wait until I’m 17 to do that,” she signed back, and I said a silent prayer to myself that I should be so lucky for her to wait that long!  I laughed inwardly at her innocence, this worldly child who knew the mechanics of sex more than anyone her age should have to know,  (the reason of which is a discussion better delegated to a more serious blog entry.)  But I doubt she ever saw anyone in love before, and she definitely had never seen anyone kiss passionately, which really surprised me.  The more I thought about it, though, I realized she hadn’t been exposed to it in her young life and the only other way she might know would be from watching television.  Because of her deafness,  she has a low reading level and is not able to understand the captioning enough to get interested in a romantic story or one of the more mature television shows which are all over the television today.  Her favorite tv station is the Animal Planet where great stories are told and no captioning is needed. She knows all about the life cycles of animals, insects and reptiles, including their different mating rituals, but, as preparation for real life, I’m sure she never saw alligators kiss like that!

Love isn’t BLIND it’s DEAF!

My 13 year old daughter announced to me the other day that she is in love!  As a young girl once myself, (many, many years ago, ) I remember the joy of first love, the innocence, the caring how you look, and the giddiness involved.  Marie showed me a picture of him. His name is Jose and he recently moved to their school from Guatemala.  Cute kid. He had already accomplished one thing…motivated Marie to go to school every day.  She also dutifully did her homework, because if she didn’t she would have to sit with the teachers at lunch rather than…Jose!!!!

When I came home from work today, my husband was exceptionally glad to see me and he said he needed help. Marie had come home from school and asked him to pick Jose up and bring him to our house.  They had been “calling each other” all afternoon.  The major problem is, both are profoundly deaf. Jose was calling her on his house phone.  Marie was desperately trying to text him on her cell phone.  A child of technology and a certain standard of living, Marie could not understand why Jose did not have a cell phone.   Jose called time and time again.  Exasperated, Marie asked me to “talk” to him.  As with Marie’s speech, his words were indistinguishable.  I explained to her that I could not understand what he was saying.  Marie came up with the bright idea of calling my other daughter, Dinora, who is also from Guatemala.  “She talk same. Understand him!”  Marie signed.  I laughed and told her she spoke Spanish but would still not be able to understand him.  My husband just shrugged. He had not been able to explain it to her either.

Marie begged for me to just go to his house to pick him up.  She knew where he lived, she insisted.  He lived in “next town”.  The “town” we live next to is the second largest city in our state.  She proudly drew a picture of 2 cross streets and a house on the corner, next to a tree.  The house had the number 123 on it.  “There”, she signed, “Map same Judge Judy.”  She was, of course, referring to the Judge Judy television show where litigants would demonstrate on a map, very similar to the one she drew, regarding how a car accident had happened.  “What name street?” I asked.  She looked at me and signed “123”.  “No, what NAME street?” I signed back. She didn’t know, but said the map was good and it would show us how to get to his house.  My husband and I burst out laughing hysterically, hurting Marie’s feelings. We explained how we would have to go street to street throughout the enormous city looking for all of the houses with “123” on them until we found Jose’s.   She did not appreciate the humor in it.  She asked to me to call his mom, which I tried to do.   However, Jose repeatedly answered the phone, wanting to “talk”  to Marie.  So, there were the 2 of them, both “talking” to each other for over an hour, neither one aware of what the other was saying.  Perhaps that is just as well…

Her PTSD caused MY PTSD

I like to write breezy, optimistic posts.  I am generally a breezy, optimistic person.  However, I also write this blog for my own stress relief. so readers are going to have to bear with me for this one.

Marie had a bad day at school yesterday.  (Well, to say “bad day” is akin to saying wave when it was really a tsunami.)  Marie had been doing very well this past year and we had not an ambulance run for a post traumatic stress episode since last February!  She still had her moments of outbursts in school for which she was gently placed in “the quiet room”, but she had always managed to calm herself down without a need for restraining or other interventions.  However, springtime is the anniversary of her removal from her birth mom. Also, we had spent the past few months finally discussing the abuse that had happened 5 years ago, including going to the police station and filing a report. (A warrant for the arrest of one of the men who had abused her had been issued, but the man had fled the country.)

Although we had always known that Marie was abused, it was only recently that she has felt comfortable discussing the details.  Whether she only recently remembered them, or whether she only recently felt confident enough to tell is in question.  Her pediatrician recently referred us to a center which has a wonderful program for individuals with disabilities and children who have been sexually abused, but I had not contacted them yet as I was waiting for a copy of the police report, (a requirement for service.)  I fear my negligence at doing so right away contributed to Marie’s PTSD episode yesterday.

By the time I arrived at the school, she had been actively violent and dissociative for over an hour.  She was not being restrained, but was in the “quiet room”, not so quietly destroying it.  The staff watched from the doorway as she ripped tape off the blackboard (which had been taped with foam so as not to be harmful during a tantrum.)  She threw the tape, then pieces of the foam and the blackboard, at the doorway.  When she is like this, she has super human strength and could level any person with one swoop of her hand, which is why the staff was wisely standing in the doorway.  I stepped into the room to try to calm her, but she did not  recognize me. She came at me wild eyed, swinging and spitting.  (Think Linda Blair in “The Exorcist.”) I retreated as her violence escalated, at which point 911 was called.  By the time the police, ambulance and firemen arrived she had wrapped the masking tape tightly around her wrists to stop her circulation and had gone over and ripped the radiator cover off the wall.  It took 8 men to subdue her, and several of them were kicked, bitten and punched. They had great concern because she was spitting at them, as blood borne pathogens are the scourge of all medical personnel.  (HIV?  Hepatitis?)  Even as I was warning them not to, they tried to put a mask on her face.  She has been through this before, and she is an expert at biting down on the mask, chewing on it and has at least one time, almost swallowed it. As she began to do so, they replaced it with a towel over her face.  They used towels to restrain her arms and legs which were swinging with great force in all directions.  She was then placed on the ambulance stretcher and whisked off to the ambulance.  All this time, she was screeching with a guttural sound that one would associate with the depths of hell.

They asked me to follow the ambulance to the hospital, which felt surreal, like a high speed video game. It’s a good thing I have nerves of steel because we drove at high speeds through the streets bypassing red lights.  At one red light, a car was in the middle of the road and the ambulance went around it on the left while I went around it on the right, just like you see on those high speed chases in movies. But it was me, a little old 55 year overweight mom, in the driver’s seat!  If it weren’t for such a serious situation, it almost would have been fun.

At the hospital, it was routine.  They knew her there.  First it was the transfer from the ambulance stretcher onto the emergency room stretcher. This move takes a great precision as the hospital restraints had to be transferred onto her arms and legs.   If this was not done quickly, an arm or a leg would become loose and would go flying for a swift, hard kick or hit. One worker did not duck and he was kicked on the side of the head. Once on the hospital stretcher, everyone backed away as the towel was removed from her face, and her spitting began anew.  The security guards donned masks with clear shields on them, making it look more like a science fiction  movie.  She was thrashing about, banging her head on the side of the stretcher.  They put a padding on the side, which she quickly grabbed onto with her mouth and began to bite through.

Fortunately, she was evaluated quickly due to the distress she was in.  She was given a shot of a tranquilizer, and her fighting and spitting quieted.  The wild look was gone from her eyes.  She calmed down, blinked and huge tears began to roll down her cheeks. She looked around and was confused as to where she was. Her eyes pleaded with me to ask the doctor unhook the restraints as she can only talk with her hands because she is deaf.  Because she was calm, they unhooked one hand so she was able to finger spell what she wanted.  She spelled out p-o-s-i-c-l-e! (She had obviously been to this emergency room several times before and she knew what they had to offer.)  She signed her throat hurt but she didn’t know why.  (Maybe from all the SCREAMING she had done for the last hour?)

She was calm and her restraints were completely removed.  A psychiatrist was to evaluate her, and I asked for a sign language interpreter. Five hours later she was evaluated.  She proceeded to tell the doctor that in school she has a hard time controlling her anger inside and when she gets angry over the least little thing she cannot control the anger and she explodes.  He asked why she was so angry and she thought about it a minute before she proceeded to tell him the story of how she was angry at her birth mom because she let men have sex with her, and she was angry at the men for hurting her.  This was the interpreter’s first time on the job, and she expertly interpreted all of the sordid details.  When Emily had finished with the story and the doctor left the room, the interpreter stepped outside the room.  She was clearly shaken, trying to hold back tears.  “I didn’t realize how difficult it would be to do this!” she said.  I reassured her that we use an interpreter often and this is the first time this difficult subject has come up.  Next time maybe she’ll interpret for a wedding or a school play, definitely something less difficult.

Because PTSD can happen at any time, it is unpredictable.  The doctor did not recommend hospitalization.  (Marie LOVES when she is hospitalized…all the popsicles she can eat, doesn’t have to go to school or do chores, and everyone dotes on her because she is so adorable.  What’s not to like?)  We did discuss getting her into counseling with the center for abuse, and a referral was made.  Because there are no counselors or social workers in our area trained in American Sign Language, Marie will have to have an interpreter for counseling sessions, not the preferable manner, but for now it is the only way.

Marie was in good spirits when we left the hospital.  She was skipping and smiling.  She had no memory of what had happened before she came to the hospital, and I was glad of that.  I have that memory, though, and I get flashbacks of the screaming and the cold, wild eyes.  Her PTSD has caused my PTSD!

Dinosaurs, Diet Coke, and Driving ‘Round in Circles

Yesterday was my brother’s birthday, so as treat, I took him on a trip to the Museum of Science.  My brother turned 51 years old, (while I am not admitting my age, I can’t deny that I am older.)  For those new to my blog, Curtis is legally blind, profoundly deaf, and severely developmentally delayed.  He can also be a joy to be around!  He is fun loving and enjoys just about anything.

My son Angel came with me on this adventure.  I picked Curtis up in the afternoon and he was so excited about the trip that he actually came dancing out of his group home, wearing a non-stop grin that was contagious.  We drove to suburban area of the city where the museum is with the plan to take the Metro into the city the next morning.  Before we went to the hotel, we stopped at a mall for dinner. Curtis’ LOVES malls, especially the food court, where we all had our choice for dinner.  After eating, Curtis wanted to walk around the mall independently.  I gave him $20 to spend and agreed we could meet back at the food court in an hour.  Off he happily went, thinking he was alone.  All the while, Angel played “spy” and followed him.  He thought he was on his own, and we didn’t want to spoil that illusion.  Off he went to, predictably, get a diet coke.  He pointed to the diet coke sign and handed the cashier his $20 bill.  She handed him his soda and his change, which he attempted to put in his pocket, (with half of it falling out on the floor.)  As he turned away to sit at a table, Angel scooped down and picked up his change to give back to him later.  Angel sat a few tables away so he could keep an eye on Curtis.  After finishing his soda, Curtis was up and moving…with his nephew as a tailgater.  Curtis then started his quest to fine every single elevator in the mall.  He knows that stores like Macy’s, JC Penney’s, Sears. and Lord & Taylor have elevators and he has the nose to sniff them all out.  In his mind, the elevators are transporters, taking him to level of the space station on Star Trek.  He has a mission to complete, to find every elevator in the mall, and after he completes his mission he can get another diet coke.

After the mall, we went to the hotel and checked in.  Curtis was so excited that he didn’t sleep well.  Every hour, ON the hour, he woke me up to see if it is time to to get up. (He learned this hourly ritual from my mother, who used to beg him to let her sleep “just one more hour”.)  I awoke at 7:30 to see him wide awake in the next bed, waiting for 8:00 am so he could wake me up and ask me if it is time to get up!  I moved to get out of bed and my movement announced that it is time to get up.  Curtis jumped up happily. He had all of his clothes on for the day. (He must have dressed during the night.)

After a quick breakfast of yogurt and bananas that I had brought, we drove the car to the parking garage for the Metro.  This happens to be his favorite parking garage in the whole world:  it has a spiral driveway all the way to the top.  As we drove, we sang and sway back and forth.  “Around and around and around and around” all the way to the top floor.  We then made our way onto the subway, which he also loves.  He asked me where we were going, as I had kept it a surprise.  Having recently lost his hearing completely, he does not yet understand that he cannot hear, so the conversation goes something like this:

C: “Where are we going?”

Me: “To see the dinosaurs.’

C:  “The aquarium?”

Me:  “No, the DINOSAURS!”

C:  “The movies?”

ME:  “NO THE DINOSAURS!!!!”

C:  “You’re taking me back home?” he said as his body melted in disappointment.

ME:  “NO!!!  WE ARE GOING TO SEE THE DINOSAURS!!!”

Realizing I was not going to get anywhere with telling him, I grabbed a piece of paper and drew a large picture of what I think was a pretty good imitation of a dinosaur.  “Oh!” he said happily, “we’re going to see Fred Flintstone?”  I sigh and shook my head yes…

I am the type of person who can sleep anywhere, any time.  Exhausted after being woken up all night long, I curled out across 3 seats in the back of the subway car, and Angel and Curtis sat across from me. It is about an hour’s ride into the city and I asked Angel to wake me up when we got closer to the city and it started to get crowded.  I was sure people would NOT appreciate me taking up 3 seats.  I fell fast asleep.  I woke up only when Angel was tugging on my sleeve because we were at our stop.  I was MORTIFIED!  I looked like a homeless person! I have “bed head” and drool coming down the side of my mouth. The subway car is full of people, many people standing up.  “I told you to WAKE me,” I reprimanded him.  At least it sounded like I was scolding him for the sake of the people standing up.  Secretly, I was grateful I was able to get an hour’s sleep in.

We had to change from the Red Line to the Green Line.  The seats in the car we entered were completely full, so Angel and I each grabbed a vertical pole and Curtis grabbed the horizontal pole above him and was kind of hanging like a monkey.  Angel and I put our arms around his waist to steady him.  The car swayed back and forth and we swayed back and forth.  Curtis thought our fingers were tickling him on purpose, so he started to laugh.  Angel and I started to laugh, and pretty soon the 3 of us were laughing hysterically.  Several of the passengers offered their seats as they could tell our predicament was precarious.  “No, thank you,” I said, “We are the adventuresome type.”

When we get to the museum, Angel, true to his nature, went to check out the museum store.  (One of his female “peeps” is a shopaholic who believes in the “shop til you drop” motto.) Curtis, true to HIS nature, wanted to eat first.   It’s not so much that he wanted to eat as he wanted to get a soda.  He is obsessed with soda.  We went through the cafeteria line and he picked out macaroni and cheese and I picked out a chicken caesar salad.  With him hanging on my arm, we payed and I looked for a seat. It was very very crowded. I was trying to do sighted guide technique with him on one arm, carrying the tray with the other, and steering him towards the one empty table I saw all the way across the room.  He spotted the sign for Diet Coke.  He wouldn’t move, just pointed at the sign.  I tried to tell him that first we needed to get a seat, that I couldn’t possibly stop for soda with a tray full of food and him on my arm, but of course he couldn’t hear me.  He continues to point at the Diet Coke sign like ET pointed to home.  He kept trying to drag me closer to the soda machine and I pulled him towards the table. The tray of food was unbalanced, and I was afraid our $35 lunch was going to drop on the floor, or, worst yet, on top of the head of one of the many children in strollers nearby. Finally I won the tug of war and we reached the empty table where I plopped the tray down, grabbed the soda cups and headed with him back in the direction of his  beloved soda. His face immediately burst into a smile as he realized what we were doing.   He was a happy camper!

We spent the rest of the afternoon exploring the museum.  The dinosaurs were  big enough for him to see, and he really enjoyed them, although he did keep asking where Fred Flintstone was.  (The Flintstones were our favorite cartoon when we were growing up.  Every Friday night.  Channel 6.  8:00 pm.)  When we finished with the exhibits, Curtis bought another soda “for the ride home” .  He perked up again when we got to the parking garage and had to go “around and around and around and around” in the car to get out.

Bringing him back to the group home was uneventful.  When the staff asked how his weekend was, he answered “GREAT!  I had diet coke and we got to drive around and around in circles.”  He didn’t even mention the hotel or the mall or the subway or the dinosaurs.  The next time I take him, I think I’ll save the money and just park at the Metro parking garage and buy him all the diet cokes he wants.  It would sure save me money, (and anyone who has read my blog before KNOWS that I like to save money!)

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