Archive for the ‘deafness’ Category

‘Twas Once a Child

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My daughter, Marie, has reached adulthood, having graduated from a residential program that had services for both her deafness and her mental health issues. This is the age of worry for any parent, especially one with so many challenges.

When she came to live with us at the age of seven and we were told she was “just deaf”, we could not have properly prepared ourselves for the roller coaster ride of a life she, and we, would have. She was a wild child, blonde hair askew, eyes angry, mouth so hungry she would hoard food under her mattress. She was very angry she had been removed from her mother, (for doing unspeakable acts which shall remain unspoken.) Despite providing her with a healthy, well cared for childhood, Marie’s disposition had been preformed. She would lie, steal, beg strangers for money, and reject all of our efforts to parent her. A hug and a kiss would throw her into a fury. Discussing our parenting situation and our need to show her love, she reluctantly let us “fist bump” her. Years later she apologized and told us her birth mom made her promise not to hug or kiss us, and that we really wouldn’t be her parents. It took us many years of fist bumps before she would accept a hug, and many years more before she would let us kiss her. She is now a young adult, and freely hugs and kisses us if the mood suits her. She shows genuine affection and appreciation, the highest reward any parent could expect from an original wild child.

Although Marie can be very capable, she has been unable to live in a non-structured setting because of her unstable bouts with Post Traumatic Stress Disorder. For those unfamiliar with this life altering condition, it is experiencing horrific memories so acutely that one becomes “in the moment” of prior abuse, crazed eyes staring back as though at her accusers, ready to defend herself with flailing arms and legs and gnashing teeth. An ambulance ride to the hospital and sedation was the only thing that could bring her out of her experience. It has always been especially tear inducing, (for me,) when at the hospital, with her hand in restraints, she would wake from the sedation, look around, and finger spell (ASL) asking me where she was, having had no memory of the event. Next she would say her throat hurts, (from screaming, no doubt,) and ask for a Popsicle, which she would skillfully eat while still in restraints.

Marie is now formally an adult. A lot of planning has gone into finding an adult home for her, one that would be staffed 24 hours. My calling all possible supported living programs in our state began about a year and a half ago. With the dual diagnosis of deafness and mental illness, no program would accept her. Many of the programs who may have had prior experience in working with her, never even returned my calls.

After working closely with the Department of Developmental Disabilities, whose frustration and efforts equaled mine; they were able to establish a placement for her that has far surpassed our expectations through a program used to dealing with adults with more severe developmental disabilities. They had no prior experience with a young adult with both of Marie’s difficulties, but once they learned there was someone in such need, they stepped right up and took on the challenge.

Marie now lives in a cute, little house on a nice residential street. As described by those on the show “House Hunters”, this one would be described at “Retro”, with bright yellow tile, a front door carved with circles, and a front porch with wrought iron table and chairs. Neighbors bring over cookies and wave to each other on the street. There are three bedrooms in the house, and she is hoping that a housemate will join her soon. She insists that her house buddy like to watch scary movies, (VERY scary movies,) and, most of all, must not be allergic to pets. Marie has a guinea pig that is usually perched on her chest with both of her hands gently stroking the lucky animal, a calming activity that works for both her and Oreo, who is black with a white center, of course.

Marie is thrilled to be able to go shopping for food she likes, not necessarily the food I have cooked for her. She is no longer in school, so work activities will happily replace the classes with which she used to have such frustration. She has directly chosen the things that she would like to do during the day, throwing out suggestions I would have thought unobtainable.

Marie has always loved to ride horses but gets frustrated that when we go, her horse needs to be tethered to another due to her deafness. She recently began an activity at a horse farm that facilitates riding for children with disabilities. For such children, the riding is therapeutic, but the horse walks slowly. Marie’s job is going to be to trot the horses at the end of the day because the horses themselves get bored walking slowly. What better job than that for someone who loves to ride horses?

Marie’s penchant for all animals has earned her a spot working with “disenfranchised” cats and kittens, that is, homeless felines. She will clean the cages, feed them, and then “show them off” like Vanna White highlights the letters on “Wheel of Fortune”. Oreo will be jealous, I’m sure, so Marie will have to wash the cat scent off before she returns home.

At this point in her life, Marie is feeling very good about herself and her care for others. She has signed up for a Meals on Wheels route, and all of those hugs she didn’t give in her early years will undoubtedly be dispensed ten times over among her lunch recipients.

As a mom with a daughter for whom life experiences didn’t start out well, I am so thrilled that in her adult life she will be doing the things she enjoys with people who will support, encourage and appreciate her. What more could any parent ask for?

 

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To read our story raising Marie and her four siblings, please purchase my book, The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane. It is on sale on Amazon and Barnes and Noble. Thank you for your support!

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His or Her Graduation

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My youngest child, Marie, will be graduating from high school at the American School for the Deaf in Hartford this week. When she came to live with us at the age of 7, her wild child behavior was so bad I never thought either of us would live to see this day. But here it is! She surprised me, this child of mine who prefers to look and dress like a boy, for which with her abuse history, her justification has always been “if you look like a girl, someone will hurt you.” She has chosen to wear a dress for graduation, the very same dress she wore uncomfortably as a junior bridesmaid at her sister’s wedding. Even though that was several years ago, she is determined to squeeze every ounce of flesh into the dress. It is fortunate she will also be wearing a graduation gown or I am sure something would get flashed somewhere!

Although she insisted on wearing her work boots with the dress, I convinced her to wear something “less hot because the day will be warm out.” She agreed to a slide on sandal, and I have chosen a pair that could be used by any sex, (once you take the bows off.)

But my choice of shoe for her makes me wonder if I have not totally accepted her for the person she feels to be. I know many parents would have great difficulty understanding if their son or daughter were gay or transgendered. Marie insisted for many years that she was a boy “inside” and even begged her pediatrician to sew a penis on her. He was very sweet with her, and suggested she wait until she was a teenager before discussing that issue again. After much counseling, it was determined she felt that way only out of desire to be safe, to no longer be abused as she had when she was a young child. Being a boy is still a façade she wishes to project, but not one she innately embraces.

Which brings us to the most recent lifelong dilemma; whether she was going to love boys or girls, a discussion SHE initiated one day. She went back and forth on the pros and cons of both. Bravely, taking a deep breath, I mentioned it would be best to love the person she would feel most comfortable having sex with. Her eyes widened. “SEX?” she asked incredibly, with great disgust. “I never want to have sex with ANYONE!” Too funny! I really jumped the gun!

Despite my desire to buy her flip-flops with bows on them, I really WOULD have accepted her decision to wear work boots, or even to have her doctor sew a penis on her if she was truly transgendered. I have survived my life by learning not to get upset over such matters; it wouldn’t change anything and would only draw us apart, possibly ruining our relationship for years to come. I love my daughter too much and will support whatever adult decision she makes. When she is older and still finding her way in the world, she won’t remember the shoes she wore at graduation. But she will remember my unconditional love and support. What more could a parent ask for?

 

Just Like a “Call the Midwife” episode

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For some odd reason, I love the show “Call the Midwife”. Every conceivable scenario for “birthing babies” (obscure reference to “Gone with the Wind”) is explored. For this reason, I will be sharing the birth of my brother.

I got swept into the drama of childbirth at the tender age of four, an early memory that was etched into my tender brain. Several months before my mom was supposed to go to the hospital to get her new baby, my dad ushered both of us into the car, handed me a very large bag of Hershey kisses and dropped me off at my grandparents. My grandparents were not your usual huggy kissy type, but the standoffish, can’t stand kids type. So I sat there alone in their oven of their Floridian sun porch, eating Hershey kisses and watching Captain Kangaroo and Howdy Doody on their tiny tv. As the chocolate melted, it was imperative to eat them right away, which, of course, I did! Covered in melted chocolate, I was able to enjoy the taste for quite a while afterwards, licking my fingers and scooping up melted spots from my dress.

When mom came home from the hospital, I jumped up and down in excitement to see my new sibling. Mom was not her cheerful self, but managed to open the blanket to show me my new brother. I had never seen a new baby before, so I thought this one just wasn’t done yet. He certainly was tiny! His baby blue eyes were tenderly open, but in the middle of his face was a gaping hole where his nose and mouth should be. Still had to grow in, I thought in my childlike innocence. He had these huge ears that stuck straight out. He was going to be able to hear everything with those ears! He was a fine looking baby!

In my childhood innocence, and before post-partum depression was a diagnosis, it seemed odd that my mother spent all of her time in bed, crying softly. She picked Curtis up to feed him with an eyedropper, but most of the milk dribbled down the side of his mouth spot. Her tears would continue to fall, and I could tell she was upset because he didn’t seem to want to drink the milk. When she laid him down for his long daily naps, he would make mewing noises like a cat. I thought it was cute until learning later that he was crying.

My childhood was turned upside down. My loving, sweet mom changed. There were no more of her tender kisses and words of encouragement. She didn’t want to play games with me, or go for one of our walks around the block. In her place was a stranger.

I was brave and tried to take care of myself, but my heart ached at the loss of my mom. She spent all of her time in bed, sleeping or quietly crying. She continued to try to feed Curtis, but most of the time the milk spilled out and she would put him down again for a nap, where his mewing was heard constantly. Sometimes, when she was asleep, I would pull a chair next to his cradle and unwrap Curtis, letting his tiny fingers hold onto one of mine. I would sing songs my mom sang to me, and sometimes he would stop mewing. Time would go by with me sitting there, stroking his bald head and telling him the story of The Three Little Pigs and Goldilocks and the Three Bears. I would be pleased with myself if he would go to sleep and not mew. He looked so peaceful and sweet!

A few weeks after Curtis was born I was sitting in the living room eating out of a cereal box and watching “Lamb Chop”. The sound of the rocking chair in my mom’s room indicated she was again fruitlessly trying to calm Curtis as he mewed. Her room suddenly brightened, as though she had turned on a million lamps. Streams of light spewed out the door of her bedroom into the living room. It was curious and strange, but I was just a kid and saw new things every day, it was no big deal. Returning to watching my favorite lamb puppet sing and dance, I was annoyed that the streams of light made it difficult to a see the tv.

From that time on, the sleeping/crying mom was replaced with my real mom. Carrying Curtis out of her room for the first time, she came over and gave me a kiss and told me she loved me. My own heart softened, and tears started to slide down my cheeks in relief. I had been brave and tried to take care of myself, but having someone else care for me was much preferred.

Mom and I went to the hospital so she could learn how to feed Curtis better. They showed her how to thicken the formula so it would not spill out of his mouth spot. She learned to squeeze little amounts in and wait for him to swallow it. Soon, both Curtis and mom got the hang of it, and he was happily gobbling down the formula. His mewing, which we had become accustomed to, stopped. As weeks went by, he gained weight and I was sure he smiled at me. Of course, it was hard to tell because he had such a strange mouth spot, but his eyes twinkled in such a way that I could tell he was smiling. What a lovely new baby brother!

Fact #1: My brother had been born with Rubella Syndrome, and was hearing impaired, legally blind, severely developmentally delayed and had several physical deformities. He was born this way because when my mother was pregnant, she came in contact with someone who had German Measles. Thankfully, a vaccine was invented to prevent this disease, which can harm more than the carrier.

Fact #2 It was years later that my mom explained what happened that day when the bright light filtered out of her room. She had been rocking mewing Curtis, herself crying and uncharacteristically cursing her life and the life of her deformed, newborn son. Unexpectedly, she was engulfed in an unbelievably bright light that emitted the feeling of unconditional love and encouragement. It washed the sadness out of her, and seemed to tell her everything was going to be all right. She knew it to be a Divine Being, and this experience changed her life, and mine, forever.

 

 

To read the life story of Linda’s sweet brother and Divinely amazing mother, along with her own passion for caring for children with disabilities, please purchase her book; The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane. It is available on Amazon and Barnes and Noble.

 

Here a Friend, There a Happiness

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My daughter, Marie, was severely abused as a toddler and young child. She came to live with us at the age of 7 after being found wandering the streets barefoot at 2 am carrying her infant brother looking for formula for him. The effects of the abuse were immediately apparent. She couldn’t stand to be touched, and would cower under the table if she felt threatened. She was angry all of the time and refused all attempts at affection. (When she was with us for a few years, she finally allowed me to give her a “fist bump” as a way of showing my love for her, a love she certainly did not reciprocate because she didn’t know what love was.)

Posttraumatic stress episodes were explosive and frequent, and required restraints and hospitalization. She had superhuman strength while in the throws of PTSD, as I am sure the EMTs and firemen who came to transport her to the hospital can attest. She turned into a super kicking, screaming, biting and hitting machine, and it was amazingly frightening to see.   If put in clothe restraints, she would eat through the cloth like a ravenous wolf. The adult restraints were too large and a smaller hole would have to be cut to fit her slim wrists and ankles. She learned to bite the inside of her mouth to spit blood and they tried to put a mask on her, which she immediately sucked into her mouth and gagged on. At the hospital, she would get a shot of Haldol, go into a trance, and wake up questioning what happened. With her hands still restrained and unable to sign regularly, her little fingers would finger spell “Where am I? Why?”

The number of PTSD episodes have subsided to once every 6 months or so. She has learned to love and be loved by her family, and, fortunately, she is making tremendous progress. Marie is going to be 20 years old this month and still attending a specialized school where she can remain until she is 21.

Marie, citing her age that she is an adult, has come more into her own. On her own, she got a tattoo of a dolphin on the inside of her wrist. She loves dolphins since swimming with them at Discovery Cove on her 12th birthday. By choosing that particular tattoo, she reasoned she could look at the dolphin every time she gets upset and it would remind her of a happy time instead of the times she was abused. Like other young adults, she has colored her hair a mixture of blue and blonde, has a lip ring and likes to pick out her own clothes. Her newest adult adventure is finding a girlfriend; recently reconnecting with an amazing girl a few years older than her with whom she attended school many years ago. They have started hanging out and Marie is giddy with excitement. (Marie has never had a real friend of any kind before.)

Yesterday the 3 of us went to Dave and Buster’s at the mall. While Marie LOVES to play the games, sometimes the crowds overwhelm her and she gets anxious, moody and socially unresponsive. Her sweet friend, who does not know the extent of Marie’s early childhood abuse, kept asking her why she was mad at her, which eventually turned into a full blown argument in the car. By the time we got home, her friend was no longer talking to her and said she was never coming to see Marie again. Marie went down and sat on the wall overlooking the lake, her head drooping down. She texted me on her phone, “Help Me”. Joining her on the wall, I noticed she was crying, something I have never seen Marie do. The tears spilled out of her eyes and were running down her cheeks like an ever-flowing fountain. Her mouth was quivering and her sad eyes said it all. I hugged her and the tears turned more torrential. After a while she signed to me “She thinks I’m mad at her and that I have an attitude. I don’t know how to tell her.” Meaning she didn’t know how to tell her about her abuse and that sometimes it still affects the way she acts. She didn’t know how to tell her how much she loved her as a friend, her FIRST friend, and she didn’t want to hurt her, but sometimes she couldn’t control her emotions. She asked me to come with her to talk to her friend to help her explain.

Her friend was annoyed. Marie began about her family history and her friend said that SHE, too, had a mother addicted to drugs and that SHE, too, had been adopted. She said she learned to just “get over it” and why couldn’t Marie? With this criticism, Marie ran from the room and back to the wall by the lake. I explained that Marie had an extremely traumatic childhood, far and above just her mom doing drugs. I explained the hurt, the hospitalizations, and the challenging life she has endured. Her friend’s angry face softened with understanding. As I was talking, a tear slipped down her cheek and she got up and went down to the wall by the lake. When I looked out the window, they were both hugging and laughing.

I pray that Marie’s friend will continue to be her friend and accept her with all of her emotional baggage. It would take an amazing friend to do that, and I have a feeling she IS that amazing!

We Had a Rockin’ New Years Eve with the Three Stooges!

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Celebrating New Year’s Eve with the children has always been a challenge. They have different tastes and interests. It is especially difficult with Marie because she is deaf. Movies are okay for her with closed captioning, but she only has a first grade reading level, so most of the words are beyond her understanding.

On Christmas day hubby hit the jackpot. Our oldest son, Francis, bought him the entire collection of the Three Stooges! We took advantage of this thoughtful gift on New Year’s Eve. The whole family sat around the television, gourmet pizza in hand, and apple juice as our simulated alcoholic drink. And we watched the Three Stooges. For HOURS. From 2014 to 2015. Their slapstick humor, so completely socially inappropriate now, was so funny that we doubled over with laughter and tears ran down our cheeks. THE WHOLE FAMILY! ESPECIALLY MARIE!!!!! Near the end of the evening, Marie, who had been sitting on the couch next to her dad, leaned over and put her head on his shoulder and her arms around his robust body. Almost afraid to move lest he scare her away, he gently put his arm around her, and looked at me and smiled. This child, who has a serious attachment disorder and from whom affection has been doled out in minuscule doses, was cuddling with her dad!

Afterwards, when we were all laughed out and the morning was near, one by one we reluctantly sauntered off to bed. While hubby and I were cuddling before allowing sleep to take over, hubby began to cry. “Did you see how Marie cuddled with me?” he asked. “It was the best night of my life.”

Yes. Yes it was!

For Sentimental, Sappy Souls

On Columbus Day, my husband and I spent a wonderful day just driving around and enjoying the autumn scenery. I don’t know about you, but I seem to have an unusual sensitivity to the beauty in nature, and was once again overwhelmed by the beauty of the bright white and yellow streaks of sun streaming down through the white puffy clouds. Such a sight always encourages me as if reinforcing the fact that yes, there are clouds, and yes there may be rain, but that sun is still up there in the sky, overseeing it all, just waiting to break through and make things better. As an added visual treat, the sun shone so brightly on the tapestry of peak autumn leaves: oranges, reds and yellows, that I felt a need to wear my sunglasses, but with them on I would not be able to fully appreciate the effect of the over-the-top, gasp inducing colors. No photo, piece of artwork or beautifully sung song could have replicated the intensity of happiness that brought tears to my eyes and joy to my heart.
My husband and I sat, holding hands as he drove. There was no need to say anything. We were at peace, pleased to have such a respite after a hectic week of raising children and dealing with problems. We were in our own beautiful bubble, cell phones turned off so as not to ruin the interlude. It was a wonderful day!
Upon pulling into the driveway of our home, I spotted the two small maple trees which Marie had planted a few years ago. She had excitedly dug them up when they were fragile saplings with broken branches, and planted one on each side of the driveway. She had added gravel at the base of each, and attached a tall, straight, thin stick to keep them growing upright. I don’t know why I hadn’t noticed them before. I had NOTICED them, of course, but I had never really SEEN them. They had grown to be about four feet tall, straight and strong. My breath stuck in my throat as the brilliant, bright yellow leaves danced happily in the gentle breeze. They were a growing metaphor for my daughter, blossoming and beautiful and holding the promise of a bright future in their little yellow leaves. Despite once being fragile and broken, they would grow tall and amazing and fit perfectly in this world, reassuring me that my daughter, who was also once fragile and broken, would grow tall and amazing and fit perfectly in this world.

Under the “Dome of Silence”

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I am really dating myself, but my favorite tv show to watch when I was a child was “Get Smart”, a spy spoof where Maxwell Smart comedically played an agent who always “got his man”, even when he didn’t know how he did it! I relate so well to Maxwell Smart and his “methods”, because my life is been pretty much the same!
But their infamous concept, the “Dome of Silence” flittered through my mind recently in an unpleasant way, a way that made me change my thoughts in a major way.
My daughter, Marie, who is deaf, has been hospitalized again. For parents of children with severe psychiatric disorders, y’all know that hospitalizations are a recurrent theme, no matter how well a child seems to be doing. Life with such a child is full of peaks and valleys, and sometimes the valleys need a tune up. As conscientious parents, we probably all play the same game…do we visit every day? Do we bring food and drinks? Games? Puzzles? In other words, do we turn each hospitalization into a reward for being there?
My brother’s schizophrenia emerged when he was just emerging himself into young adulthood at the age of 18. This was a surprise disability on top of his already existing developmental, vision and hearing disabilities. As my parents aged, he eventually lived in a wonderful group home, but HE also needed “tune ups” in a psychiatric hospital, generally after an incident where the aliens told him to walk ten miles to the train station, or throw himself against the wall as punishment for some unknown offense. These hospitalizations were regular, and each and every time my mom would visit every day, bringing with her his favorite desserts, or a milk shake or ice cream sundae. Her heart ached to see him in the hospital so often, so she would sit there for hours with him, holding his hand or rubbing his back. It made her feel better to visit with him, and it made him feel better also. In fact, it made him feel so much better that the frequency of his “tune ups” increased. I learned as a young adult that being in a psychiatric hospital should not be rewarded with food and puzzles, or even with visitation every day.
I have tempered my need to mother my daughter with the need not to make inpatient hospitalizations seem better than the residential school in which she lives. Following my own instincts, which were reinforced by Marie’s social worker and psychiatrist, I have limited my visits. Yesterday, however, I changed my mind.
The hospitals have all been wonderful at providing ASL interpreters for at least 12 hours a day, which facilitates her conversations with nurses, social workers, unit workers and her psychiatrist. Marie does not, however, want to utilize the interpreter in conversations with other children. She tries to fit in with them, but does not understand what they are saying or laughing at. Being somewhat paranoid, (aren’t all teenagers?) she suspects they are laughing at her. She tries to join in, and they may include her for a few minutes, but soon the conversation continues over her head, and the children are once again laughing and joking and not including her. As I was leaving yesterday I witnessed this happening, saw the look of sadness in Marie’s eyes and noticed that she was holding back tears so as not to further embarrass herself in front of the other children. She looked so alone, and in reality she was. The other children were under a “Dome of Silence”. She could see them talking, gesturing and laughing, but could not hear or understand what they were saying. I don’t know why this obscure reference came to mind, but it did, and the visualization of it has changed my way of thinking. I realized that her isolation from others trumps the need not to reward her for being in the hospital. Nothing in the hospital could be a reward for her, as she is not part of the community as she is in her school. If anything, one would think she would be so adverse to being in the hospital that she would do anything in her power not to be hospitalized. Ah, the irony of that nostalgic “Dome of Silence.” I think I will visit for a few hours today and bring her a milkshake. We will sit there and “talk” in ASL and I will hold her hand like my mother did with my brother. She will no longer be sad and isolated, at least not during my visit…

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To read more about our life, here is a 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/

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