Posts tagged ‘deaf children’

It Was The Best Movie EVER, and It Had Nothing to Do with the Title…

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I apologize to those readers who have read this post from six months ago.  However, as I spend my weekends with Marie, this major development never ceases to thrill and amaze me, and it bears repeating…

Yesterday my daughter, Marie, and I went to the movies.  The name of the movie isn’t important, (except to say it was  a Pixar film.)  The reason it was so great was because, for the first time since we adopted her nine years ago, I finally got to sit and relax and enjoy the movies!

Marie is profoundly deaf and communicates in American Sign Language.  The movies we tend to see are movies such as Shrek, Finding Nemo, Ice Age, Madagascar and so forth. The negative thing about these wonderful movies is that there is no way Marie can lip read what the characters are saying.  “I love you so much” can look like “Go jump in a dump.”  In order for her to enjoy the movies, we have long sat in the last row, underneath the single emergency light in the far left corner, and I have “signed” what the characters are saying.  Although my signing isn’t fluent, she laughs in all of the appropriate places, so I am happy.  (A happy child makes for a happy parent.)  The bad part of all of this is that I don’t get to really enjoy the movie.  I am so busy signing that I don’t get to see what is happening on screen. PLUS, (major disappointment…sob…sob….) I don’t ever get a break to eat any of the popcorn Marie happily munches away on.

Then came rear window captioning.  It sounds like a great idea. It is basically a screen of plexiglass that sits in the cup holder and it has to be positioned JUST RIGHT in order to reflect back the words that are coming off the projector at the far end of the auditorium.  The problem with Marie is that she also has ADHD.  She fiddles with it and fiddles with it until it is covered in popcorn butter and it is impossible to read the words. Plus, it must be damn annoying to the movie patrons sitting anywhere near us.

Well, yesterday the heavens opened up and dropped down a device only God could have made to relieve me of my signing duties…a small device that also sits in the cup holder but has closed captions.  Marie positioned it perfectly to fit her view of the screen the same as she watches closed captioning on television.  To her it was no miracle.  She’s used to closed captioning, and it probably didn’t mean all that much, because she gets to enjoy the movie either way.  But for me, it WAS a miracle. For the first time in NINE YEARS I finally got to enjoy that delicious (?) movie popcorn and I could watch the movie and actually enjoy it.  It was the BEST MOVIE EVER!!!!!

 

 

 

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I would love to come and speak for your group or at your conference.  I would do it for free, but would need the price of travel. For functions in the North East, that would be only gas money.

Link to my book

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

Link to the Readers Digest review of my book:  http://www.rd.com/recommends/what-to-read-after-a-hurricane/

He Ain’t Heavy, He’s my Brother

I led a very untraditional lifestyle when I was growing up.  My father, whom I later realized was schizophrenic, had the wanderlust to travel, which our family did for about 6 months of the year. He would remove me out of school and we would take off for various areas of the country, living in our Volkswagen van. ( Although I am sure that today’s public education system would not allow it, somehow I think my father would have taken me out anyway.)

It was quite an adventure for a child like me.  I have a vivid memory of cracking eggs in a big, black, iron frying pan over a campfire in the Badlands in South Dakota.  The rocks the pan was on were not sturdy, and the pan fell sideways with the eggs slowly leaking out onto the pine needles on the ground.  (Clumsy then…still clumsy.) I remember traveling in southern Georgia, driving for miles watching red clay cover everything…the houses, the cars, and even the clothes hanging on the lines.  It was at the beginning of the civil rights movement, and I was uneducated in this area, (probably because I didn’t go to school!) The whole concept of a bathroom for “whites only” was a shock to me.  Did that mean that only people wearing white clothes could use it?  (I’m picturing nurses, dentists, pharmacists…)  I couldn’t use it because I had on my only pair of pants, jeans, and a multi-colored t-shirt. But I had to go to the bathroom baaaaad, where would I go?  Behind the bushes? How degrading!  My misunderstanding of this concept is now a slight reminder of what it felt like be African American in the 60′s. I also have the memory of  a bear at Yellowstone Park coming onto our campsite to eat our dinner as we all huddled in the car. My brother, Curtis, was upset because he had left a package of Cracker Jacks on the picnic table.  We had to restrain him from leaping out of the car to get it.  Afterwards, I was not so keen to sit by the campfire…

But most of all, I remember my constant companion; Curtis.  He was four years younger than I was, and he had been born with Rubella Syndrome; developmentally delayed, cleft palate, legally blind, and severely hearing impaired.  He was my buddy.  Because my dad was extremely frugal, (ie obsessive compulsive disorder frugal,) I did not have many toys to play with.  So, in addition to reading a lot, I played in our surroundings with my brother.  I have a memory of  sitting by a stream, sun shining down on the water through the leaves on the trees. Curtis was happily splashing about in the shallow water.  I was looking for rocks that somewhat resembled people.  (They were no Barbie dolls, but some kind of looked like Alfred Hitchcock and Potato Head.) All of a sudden I heard a whoooooosh!  Curtis had ventured too far into the water and the current started to carry him downstream!  Fortunately, I had long, slim legs (in those days,) and with a few strides, I picked him up by the back of his pants. He was laughing heartily.  To him it was a real adventure.  Like the poor person’s substitute for a ride at Disneyland!

We actually had a lovely childhood together. I had to carry him everywhere because he could not walk sturdily.  Carrying him was just a natural way of life for me.  I don’t know why, but I never thought to be embarrassed by him, (although his screeching and attempt at speech WAS pretty scary).  I never ever thought of him as a burden.  He was just my buddy, Curtis.

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My parents rarely took pictures.  (The money thing again…) But I do remember ONE picture.  It was a picture of me and Curtis, standing in front of Mount Rushmore.  I was characteristically giving him a piggy back ride.  The photo shows Curtis, looking over my shoulder, eyes squinted shut by the glare of the sun.  I was wearing a stupid, treasured, red velvet derby hat, (you know, like jockeys wear.) As the dead presidents loomed behind us, I gave my characteristically stupid, toothy grin, (like all children do when their parents ask them to smile.) And on that day, I first heard the song from Neil Diamond which fit my sentiments exactly: “He Ain’t Heavy, He’s My Brother”.  It was a powerful moment to think that someone had put into words what my life was like.

I was so very lucky to have been raised the way I was because it formed my personality, my temperament, and my compassion for others. I personally cannot take credit for the way I live now, fostering and adopting children. I am not selfless, nor amazing, nor wonderful, nor any of the other adjectives readers have used to describe me. I am simply living my life the way I was raised and it is a wonderful life!

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Link to my book  The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

 

He Ain’t Heavy, He’s My Brother Lyrics

The road is long

With many a winding turn

That leads us to who knows where

Who knows where

But I’m strong

Strong enough to carry him

He ain’t heavy,he’s my brother

So on we go

His welfare is of my concern

No burden is he to bear

We’ll get there

For I know

He would not encumber me

He ain’t heavy, he’s my brother

If I’m laden at all

I’m laden with sadness

That everyone’s heart

Isn’t filled with the gladness

Of love for one another

It’s a long, long road

From which there is no return

While we’re on the way to there

Why not share

And the load

Doesn’t weigh me down at all

He ain’t heavy he’s my brother

He’s my brother

He ain’t heavy, he’s my brother

He ain’t heavy, he’s my brother

written by Bobby Scott and Bob Russell

performed by Neil Diamond in 1970

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Link to the Readers Digest review of my book:  http://www.rd.com/recommends/what-to-read-after-a-hurricane/

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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I Never Thought I’d be Thankful for Having Big Breasts…and I Don’t Mean the Ones on the Turkey!

I waitressed from the age of 15 to 27, and it was a great job to have during college and as I started my career as a social worker.  I learned how to balance eight plates on my arm, and carry another 3 more in my hand.  I could gather up 8 glasses of water and get them to the table without spilling a drop.  I enjoyed the customers and nothing on the job bothered me…if I can handle life with five kids with ridiculously difficult problems, I could handle a burnt meal or two, the Heimlich maneuver, and customers running out without paying their checks.  So, when the time came recently that we needed extra money, I obtained a job as a waitress at a well known local restaurant nearby. Of course, I haven’t done this job in 30 years, and I AM a little older, but I thought I could still do well (and use my Cheshire cat smile to charm the customers into leaving large tips.)  I have worked for a week at this job, and I DO like it, but age has a way of affecting how I do my job.  When I squat down to get something from a bottom shelf, I can’t get up without a helping hand.  I need glasses to read the orders.  At this restaurant, which is more “elegant” than where I worked before, we need to use trays on which to place the plates of food, not line them up our arms, (a technique which served me well so many years ago!)  The problem is, I have arthritis in my hands and elbows and my balance is a little off, so I have difficulty carrying a tray full of meals up on my shoulder using one hand.  I CAN carry the tray on my shoulder if I use 2 hands, but the problem then comes when I have to put it gracefully down.  The other waitresses deftly grab a tray stand with one hand while balancing the meals with the other.  That’s not gonna happen with me.

This is where my appreciation of large breasts comes in.  I had always hated them.  The bra straps hurt.  They poke out unattractively.  If I try to wear a necklace, it sits at an awkward angle.  I am forever collecting crumbs on them. And they have just generally been a pain in the neck to put up with.  Until now.  When waitressing, I have learned how to take the tray off of my shoulders with both hands, and, with one hand under the tray and the top part of the tray balanced solidly under my left breast, I use my other hand to serve the meals.  Mission accomplished!  I wonder how long I’ll be able to do this before the management notices the gravy stains on my apron!

Another Prom Mis-Disaster

I wrote a while ago about the damage I did to my daughter, Dinora’s, prom dress eight or nine years ago.  I miscalculated my ability to hem such a delicate item (ON the day of the prom when she told me it was too long to go with her shoes…after weeks of my asking….) The hem was crooked and the dress was gathered in places it should be gathered! I was saved from the humiliation of being a terrible mother by a local taylor who miraculously fixed my mistake, leaving her prom dress in pristine condition.

Well, my youngest daughter, Marie, who is deaf,  is going to a prom next month.  This is the daughter who has always preferred to wear male clothing, even men’s bathing suits!  Her theory is, if she dresses like a boy, no one will think she is a girl, so no men will “bother” her…  She, of course, does not realize that at sixteen years old, she has developed in such a way that men’s clothing can no longer disguise the fact that she is a girl.

Marie had a talk with her counselor, and she actually decided she wants to wear a prom dress, which would be the first DRESS she ever wore.  She was mortified at the thought of a short dress, but warmed to the idea of a full length gown.  So, last weekend I took her shopping for a prom dress, every mother’s dream activity to do with her growing daughter. Again, my dream activity quickly turned to a nightmare, but then I was again saved from disaster.

The day started out fine as we went to the mall.  Marie led the way to a major store she knows I have a credit card to.  (Thus my laments that I “have no money” would be moot to her.)  The gowns were dazzling bright with sequins and frills, but not enough fabric to cover Marie’s “growing” body.  She ran from rack to rack, picking out modest gowns to try on.  Looking at the size 11s, I knew she was not going to fit into them.  In the dressing room, she kept asking me to help her zip them up.  I tried to explain to her they were too small, but she accused me of not helping her enough!  We had an argument in the dressing room and she flew out in anger.  We walked the length of the mall with her seething inwardly, when she spotted JC Penney, another store to which I have a credit card.  We found the prom gown section, and BLESS this store…they had gowns all the way up to size 19/20.  Marie, in her glory amongst the choices, found what she thought to be the perfect gown and they had it in her size.  It was white with rhinestones and layers of ruffles and her eyes glowed happily as she tried it on.  She looked like a bride and my eyes filled up with tears. I thought of the despair we felt as she left the previous store without a dress, and the joy we both felt as she found a dress to fit her.  I say thank you to those stores who have clothes of all sizes for teenagers, especially JC Penney’s, which enabled one sixteen year old girl who is deaf to move one step closer to her date at the prom.

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!!!!

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…

An Expensive Bike Ride!

My 13 year old daughter who has ADHD, Post Traumatic Stress Disorder and is profoundly deaf, was riding her bike near our little vacation home in New Hampshire.  Our “neighborhood” has dirt roads and the cars drive very slowly.  One afternoon, a neighbor whom we barely knew came to the door.  He indicated Marie had been in a bike accident.  I ran out to follow him and learned she had hit a gravel patch and the bike slipped and fell out from underneath her.  Many people had gathered and she was screaming dramatically as she tends to do.  Because she is deaf and non-verbal, if she wants something she screams loudly and the neighbors mistook this for pain and had called an ambulance.  I got there just as they were putting her in the ambulance and she was screaming blood curdling screams.  One would think she was severely injured.  She was, however, petrified! With her ADHD and Post Traumatic Stress disorder she becomes completely unhinged any time she is restrained, and they had her restrained on a back board with a neck brace.

I followed them to the hospital where she continued to scream.  I requested they give her a dose of Ativan, which lessened the screaming a little.  I asked her where it hurt and she signed back in ASL alphabet with her restrained hand

that her neck hurt badly.  They did x-rays.  Then they did more x-rays at her bedside because even though she was still fully restrained, she had moved enough so that the first x-rays did not come out clearly. The x-rays showed no sign of neck injury.  She still complained tearfully that her neck hurt.  They sedated her further in order to do a CAT scan.  That came back showing no sign of neck injury.  The doctor finally thought it was safe to take the restraints off.  Off came the neck collar.  The crying stopped.  “Good!”  she signed, “Now my neck does not hurt anymore.”  The doctor looked at her neck and noticed that a too small child’s collar had been put on her and there was a huge red mark where the collar had been pinching her skin.  This child had not been hurt at all in the bike fall! She was injured by a too small neck brace! Although frustrated at what we had been through, I was at least glad it was over and she was okay.  However, I was not very glad when the bill for the emergency room came.  I have been paying in installments on the $3200 bill uncovered by her state Medicaid insurance program.  That is a lot of money for a bike ride!

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