Archive for the ‘child deafness’ Category

I KNOW there is a heaven.

I generally try to write upbeat posts…that with whatever difficulties we have, there is always something good to find.  This post will be different than the rest…it will be about my younger brother’s death.  It won’t be upbeat, but there is something good that has come out of it.  I KNOW there is a heaven. Without a doubt.  Proof positive.

My brother, for those who are unfamiliar with my “life story”, was born during the Rubella days.  My mother somehow contracted German measles while she was pregnant with him and he was born legally blind, severely hearing impaired, (almost deaf by the time he died,) severely developmentally delayed, with a cleft palate.  His life with us is what taught me such tolerance for individuals with disabilities.  My brother was disabled, but he was a joy to be around.  He had simple pleasures that made him smile, and to me, he life was as worthwhile as anyone else’s.

He was wholly incorporated into our family life and he did everything with us.  When we traveled extensively, his favorite activity was paying the toll at the toll booth.  My father would drive up to the booth so Curtis’ hand could reach the booth, and give him the money to put in.  He took great joy in reaching out to feel the basket and put the money in.  I swear my father always took the turnpikes with tolls solely so Curtis could have fun paying.

Around the time I grew up and got married, Curtis developed schizophrenia.  The simple pleasures he had in life were replaced by demons and aliens telling him to do things.  Curtis, ever the obedient soul, started to wander the streets in the middle of the night doing what these voices instructed, and there came a time when my parents had to place him in a group home.  We were fortunate in the fact that it was a wonderful group home, full of caring staff, and they took excellent care of him.  Every Saturday my mother, my kids and I would pick Curtis up and take him out for the day, usually to the mall to walk around.  He loved malls, especially riding up and down the escalators and elevators.  To be so joyful doing something so ordinary was one of his gifts.

My mother, who was very spiritual and had several supernatural experiences,  passed away two years ago, in November.  (Note a reblog I’ve attached following this one entitled Angels Among Us.)  Although we missed her terribly, my children and I continued our outings with Curtis.  All of my children loved him and would often argue who would sit next to him, or who would be his sighted guide. Their immediate, natural attachment to him amazed me given his severe disabilities and his disfigured head.  (His head was flattened on the back and he had huge ears that stuck straight out to the side.  My daughter who is deaf gave him the “sign” name, one that usually highlights a person’s individual characteristics, of Uncle Ears.)

We continued to take him out and he appeared to have his same zest for life until October of last year.  All of a sudden, his skills began to decline. Numerous medical tests were done and he was determined to be perfectly healthy.  At the mall, although he always had shuffled along when he walked, his shuffling turned to dragging his feet, then losing his balance, then having to use a wheelchair to get around.  Again medical tests.  No medical reason for his decline.

I remember guiltily the last time I took him to his favorite mall.  He was in his wheelchair, but I left the footrests in the car, assuming he could pick his feet up or shuffle them along.  I knew I was in trouble when I purchased his favorite ice cream with strawberry sauce. Because  he had lost the ability to feed himself,  I spoon fed it to him. He started to spit it out.  He didn’t want it!  His favorite thing to eat!  I new I needed to get him to a hospital, but had to bring him back to the group home first because they had his medical records. When I tried to push the wheelchair, his feet stuck to the ground. He did not lift them or shuffle along.  They just hung there.  If I pushed it forward, his feet would get stuck under the wheelchair.  With tears stinging my eyes, I did the only thing I could do to get him out of the mall.  I turned around and pulled the wheelchair backwards.  I could hear the thump thump thump of his feet on the ground and I started to cry in ernest. I had to pick him up to put him in my car, and he slumped over to the side with only the seatbelt keeping him from falling over.  It was obvious he had declined to the point that neither I nor the group home could take care of him. We took him to the hospital where he was admitted and again found to have no medical problems so he was placed in a nursing home. It was difficult to find a nursing home that would take him due to his numerous scary diagnosis; deaf, blind, schizophrenic.  He ended up in a less than perfect quality facility.  Due to frequent attacks of anxiety, when I first visited him I found him in restraints and his hospital bed mattress on the floor.  They were concerned that he would fall out of bed, so the had removed the actual bed and just left the mattress. He was alone, and a tray of food uneaten, (unseen by him) was in the corner of the room. They would come in and poke and prod him, give him medicine and needles, never treated him like a valuable human being.  He could not hear what they would say, the needle would pinch him, a blood pressure cuff would take readings, the thermometer would be used to take his temperature, and all of this would come at him out of the darkness and he did not know what was going on.  No wonder he was anxious!

Recognizing that with the swiftness of his decline he did not have much longer to live, I made the decision to stay with him at all times. I had to preserve his dignity.  We had done all we could so he could live a happy, dignified life, I could not abandon him at the end of that life.  With my being there, he no longer needed the restraints. My husband valiantly cared for all of the kiddos at home while I took care of my brother.   I spent my days sitting in his private room trying to coax some food into him.  When he wouldn’t eat the food they gave him, I would bring ice cream, pudding, applesauce and other things I knew he would like. I would lay on the floor next to him and rub his back or his arm, like we used to do.  If he could not see or hear me, I am sure that he could tell by my touch that I was there.

Within a week, we knew that he was fading away quickly.  My brother, who despite his disabilities had been as healthy as a horse his whole life, was dying and there was no medical reason for it.  Then I learned the reason; on his last night, while I was rubbing his arm, he turned to me, opened his eyes so wide it seemed as though he could see me, and he said plain as day, without the almost unintelligible garbled speech he used to have, “Mom is calling for me.  I will be going to heaven soon.” Then he shut his eyes and never opened them again. He died exactly one year to the date as my mother.

Yes, there is a heaven.  I know because my brother told me.

For those who might want to read more about my incredible family, the e-book The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane is available on Barnes and Noble, Amazon and I-Books.

My teenager talks on the phone…

I am so excited!!!!  As I sit here at the computer my teenage daughter is chatting with her friends.  They’ve talked about Justin Bieber, what they’re going to do after school, what color they are going to do their nails next, and the regular banter of teenagers.  It is music to this mother’s ears because it is the first time she has ever been able to talk to her friends.  Of course, she has her cell phone and she is able to text her friends, but this this the first time I can see the giggles and silly faces teenagers make when they are happy. My daughter is deaf, and she has just learned how to use the Sorenson Video phone. She can now see her friends and they can talk with American Sign Language!  At last, I have a “normal” teenage daughter!!!!

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!!!!

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!

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