Posts tagged ‘deaf’

I Get All of My Exercise in the Driver’s Seat of My Van

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My daughter, Marie, is in a residential school, out-of-state.  I drive the hour and a half to see her at least once a week, sometimes twice.  If you have read my book, you know that I HATE to ride.  (I spent my childhood zig zagging across the country.) Driving is no better, and I need to focus or I will fall asleep.

Talking books on tape used to keep my attention for the ride, but taped books are getting harder and harder to find.  Music has become my new listening alternative.  Not just ANY music…noooooooo….only the rock music of my youth; Proud Mary, Sweet Caroline, Born to Run, Papa was a Rolling Stone….   Of course when one hears this music, one’s body can’t help but “dance” to the beat and one’s mouth HAS to sing along, and I am no exception.  The fact that I am in a van somewhat limits my moves, but not altogether.  While driving down the straight highway at 55 miles per hour, (the fastest my 2002 van can manage,)  I can safely swing and wave my arms, (alternately, of course,) bounce, tap and kick my left leg, twist at the waist, and move my shoulders, and do so with great veracity in time to the music.  I have found this new driving routine to be loads of fun helping to both pass the time AND exercise!  Although I am not self-conscious, and the stares from others would not bother me,  I am so busy looking at the road that I don’t see them! Reality comes into play every time a tractor trailer truck drives by because our seats are at the same height.  I am sure that the driver is mortified at the sight of me, as I am no substitute for the sexy young woman for whom he was looking, but what sexy young woman would be driving a huge old old, rusty van like mine anyway?

As the summer approaches,  I will be singing with the windows down because the vans air conditioning met an untimely death last summer.  Most people DO have air conditioning and thankfully (for them) their windows will be closed and the buzz of the air conditioning will drown out any ear shattering notes coming from my van.

If you see me doing my ”moves like Mick Jagger” on the highway, I will be too busy driving and exercising to see YOU. However, if you happen to see a somewhat middle aged woman, hair wild and wind blown, climb her way down from the seat of a very old, high van seat, and she has skinny arms, a skinny left leg, tiny waist but a big butt and plump right leg, smile and wave because that would be me….

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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/

Category:

ADHD, child, Children, deaf, disability, driving, family, foster care, fun, happy, joy, kids, life, mother, Uncategorized, van

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A Name a Ventriloquist Would Love…

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We had to put our  beloved dog, Brandy to sleep last summer, and our house has been empty, dog-wise at least, until Jody, a labrador/poodle mix came to live with us a month ago.  She is a sweet three month old, with a lot of energy and not much common sense.  Of course, she is still a baby and I guess babies themselves don’t have a lot of common sense, so I shouldn’t be so harsh.  After all, babies don’t come out of the womb knowing how to use the toilet, so why should I expect anything different from a puppy?  The problem is,  she is a fanatic about only peeing on a pile of newspaper.  We have to be very careful not to leave any paper lying around lest she pee on yesterday’s top story which I have not had a chance to read.  We have been desperately trying to get her to go outside, but she has developed this irrational fear of  going anywhere OTHER than on the newspaper.  She seems to be very stuck in her ways, because at the dog park she ran around and played with the other puppies for a few hours, and she did not leak so much as a drop of pee.  Have you ever heard of a dog that plays in an area where there are other dogs and it does NOT mark it’s territory, or at least leave a little fragrant sample for others?  Not Jody…she held it in until we come home, when she ran straight for the newspaper and peed a massive amount, like she has been holding it all in for hours, (which she clearly HAD.) Poor President Obama’s news would not get read that day.

I began to move the newspaper closer to the back door so she would get the idea that she should be doing  it outside.  She was getting there…closer and closer.  Finally, I eliminated the paper altogether and left the back door open for her to go outside whenever she wanted.  (Fortunately, it was not one of those days where we got a freak snow storm.)  She went outside to play.  She went outside to dig in the dirt.  She went outside to swat bugs from her face.  She went outside to chew on the branches of a nearby tree.  But she would not go outside to pee.  Sensing her distress, I did the only thing I could think of; I put a piece of newspaper outside. She ran straight as an arrow to use it.  Now, she goes to the door, barks, I let her out, and she pees on the newspaper.  If there is no paper, she looks at me with a forlorn expression, and just stands there…it appears that my newspaper subscription will have to be doubled!

Yesterday, I drove Jody up to visit with Marie, (who attends a  residential school for children who are deaf.) Marie loves animals, but they do not take to her too kindly because her semblance of speech is loud and guttural, (even scaring me if I was alone in a dark room and didn’t know she was there.) When she called the dog, she scared the poor puppy, which cowered. Marie looked at me with a great sadness. HOW could the puppy not LIKE her?  Then she called the dog again, but as I stood behind her, under my breath, I also called the dog, which came running to us.  Marie angrily turned and looked at me.  ”YOU called her,” she signed in ASL, “I saw your lips move”, obviously with the eyes she has in the back of her head.  She was devastated the dog would not come for her alone.  So, we tried it again.  This time, I put a large smile on my face and forced a cheery “Jody!!!” through my smile, not moving my lips.  The dog came running, Marie was happy that I had not called her, (?) and my lips didn’t move a bit!  (Try it….)  The fact that her friends and teachers to whom she introduced the dog were also deaf was also a lucky break on my part because they couldn’t squeal on me.

Okay, so it was a little bit dishonest on my part, but what parents don’t do things a little bit out of the ordinary to see their children happy?  Nothing feels better than the warm heart you get when you see your children smile, and Marie was smiling a lot that day.  Besides, the dog will soon learn to love Marie as we do, even though she can be a little loud and scary…

 

 

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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/

Category:

Children, deaf, disabilities, family, happy, kids, life, news, parenting

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Mother’s Day and Delayed Rewards

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Mother’s Day is a wonderful time to appreciate moms, step-moms, birth moms, adoptive moms, wanna be moms and women who love children. Bless you for making a difference in a child’s life! Don’t you get joy from seeing the joy in a laughing child, the shy smile of a child with twinkling eyes, and the serene look on their faces when they are sleeping?  Ahhhhhh……..what sweet little rewards of being with a child…

Most of us know, however, that it is VERY difficult to be a mom and sometimes the REAL rewards are far apart….

When my son Steven was in nursery school, it was a real challenge because of his autistic and ADHD problems. He had been born addicted to cocaine and heroine and his nervous system was “messed up” (my professional diagnosis.) Bringing him was a real challenge as he would kick and scream and cry, yet I did it because he could not hide out safely at home for his entire life with me vacuuming around him. At first, he would  spend most of the time in school hiding out in the “quiet tent”, playing with his plastic reptiles, sometimes soaking in the information from the teacher. Eventually, he sauntered out of his safe space to see what was going on.  He did not join the other children, but he was with them…a huge improvement.  Eventually, nursery school became normalized for him; part of his routine.  He would come home with his little projects; a paper flower, a painted snake, a play dough alligator.  I had learned not to make a “fuss” over these things, but to quietly tell him they were wonderful while his head dropped to his chest, eyes closed.  (He was not a child who could tolerate excitement of any kind.)  He survived two years in that classroom, and I wondered how he would act on “graduation day”, a celebration seemingly out of his tolerance level.  All of the children stood there in their little paper graduation caps, tassels dangling in front of their noses so they had to keep blowing them away.  All of the children except Steven.  The children sang a song, and thanked their moms and generally wowed the crowd with their antics.  All of the children except Steven.  The children walked in a nice, straight line to get their nursery school diplomas; all except Steven.  When all but one diploma had been handed out, the teacher walked over to where Steven was hiding under a chair, butt facing outwards. (If I had been smart, I would have sewed a smiley face on the butt of his pants, but, alas, I had been unrealistically hoping that he would join the other children in the graduation ceremony.)  The teacher bent down with the document and Steven’s  little hand reached out to grab it.  He quickly pulled the diploma out of sight.  Calm and cool under the seat, he had made it! Steven had graduated from nursery school without a tantrum, yelling or screaming.  He graduated in the manner he felt most comfortable, but graduate he did!  What a reward that was for me; I was a proud mother, indeed!

Diagnosed in elementary school with Dissociative Identity Disorder, Angel, has been very carefully placed in specialized classrooms.  Although intelligent and able to do grade level work, he frequently changes “parts”, (his word for his alternate personalities.)  His teachers and teacher aids, bless their souls, understand him well, and manage to educate him, even if it means repeating the same lesson because a different “part” was out that day, or giving his the test over because the “part” that studied for the test is not the “part” that took the test!  He has a baby part which necessitates him to just “veg out” in a large mushroom chair.  On those days, nothing was learned.  His condition has been kept top secret and no unnecessary teachers or others in the school know about it. Fortunately, he has been living a very “normal” life.  I have found one surprising benefit…he has a “Game Show Host” part.  I work with a recreational group of adults with disabilities, and every now and then we play Bingo or Family Feud. Angel, as have all of my children, regularly comes with me.  One day, he asked to be the moderator for Family Feud and his “performance” was beyond hilarious.  Usually a reserved child with groups, all of a sudden he channeled Richard Dawson! He went down the rows of “contestants”, gave each of them a peck on the cheek, and, while holding their hands in his, asked their names and a little about themselves.  The older women, who probably have not had much attention in their lives, giggled and smiled and blushed.  Then, Angel read each question with gusto, and made a “ding” noise when they got it right, and a loud buzzer noise if they got it wrong.  It was sooooooooooo funny because it was so out of character of the Angel that they knew.  This group of adult with disabilities, many of whom live alone on a minimum income with this once a week outing their only time out of their houses, were laughing hysterically that evening. Ever since then, they look forward to Family Feud and “Gameshow Host” Angel! What a reward for me to see Angel’s  give such joy to these wonderful people!

As a graduation present, my daughter, Dinora, and I took a trip back to her birth country in Guatemala.  She had done fundraising to assist with the opening of a soup kitchen in Antigua, and we were there for “opening day”.  We went shopping that morning, taking a little “putt putt” (2 wheeled open air taxi) into the village, giggling all the way as it bounced along. We bought flowers of all bright shapes and sizes, which stuck out of the putt putt on the way back, narrowly bopping passers by on the head. We spread the flowers out in front of  the  alter where a mass was to be said in honor of the opening of the facility. An overflowing crowd of people filled the make-shift pews, and it was a beautiful, emotional mass. Even though it was all in Spanish I seemed to understand every word, and I could certainly feel the emotion in the songs which the Indigenous Guatemalans sang.  After mass, people lined up for the food in their brightly colored clothing. There was my daughter, a young adult, behind the counter, dark hair pulled back into a pony tail, serving food with a beaming smile on her face showing dimples I never knew she had, (or perhaps she had never smiled so brightly.)  She was old enough and cared enough to give back something and help “her people” as she called them. I will never forget the sight of her…sweat on her brow, wiping her hands on her apron, making pleasant conversation in Spanish while smiling that amazing smile…   How could that sight NOT be a reward for a mom after years of raising a difficult teen?

Raising Marie has been the most difficult because of her many serious challenges.  When she came to us, she was street smart at the age of seven.(See post “All She did Was Scream and Say No! No! No!) She had no thought of danger and no social skills.  Although this may sound silly, one of my concerns was the fact that she would litter.  Get a drink; throw the bottle on the ground.  Have a piece of gum; throw the wrapper on the ground. Popsicle; stick thrown in the grass.    Repeatedly, I would have her pick it up and throw it away, explaining that we don’t litter in our family.  Marie could not have cared less…she did not want to be in our family anyway…  It took many months with us before she learned not to litter.  That’s why it shocked me when we were at the mall one day and she casually flicked the paper from her straw onto the ground.  My eyes widened, and just as I was about to ask her to pick it up, she bent down and picked it up, signing to me “I was just teasing you!  I know we don’t litter in this family!”  What a reward it was to hear her say that!  Finally, she felt part of our family!

My most favorite reward I saved for last.  For all of you parents, especially parents with children with disabilities, I will share that there has been no greater reward in my life than seeing my son, Francis, become a successful adult. Despite being legally blind, he has a college degree, is very successful in a job which he loves and through which he is benefitting others, and he recently married a great woman who not only loves him for the wonderful person that he is, but can also drive a car so he won’t have to take public transit to work any more!  There IS no greater reward for a parent; to know that the problems, fun, hard work, love, difficulties and dispersed joys of childhood have come together in a positive way. My son has officially “made it” to adulthood.  Now he can look forward to the rewards he will experience in raising his own children. Then I get the extra rewards of grandchildren!

To all of you mothers and others out there, Happy Mother’s Day!  Beyond the handmade cards, the flowers, the breakfasts and dinners out, and the gifts of the day, so many more rewards await you.  Sometimes you just have to be patient…

Category:

ADHD, adoption, autism, autistic, blind, child, Children, church, deaf, DID, disabilities, Disabled children, dissociative identity disorder, education, family, foster care, God, happy, hearing impaired, hope, joy, kids, life, mental health, mentally ill, mom, mother, news, psychology, PTSD, Uncategorized

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Easter reminds me of the Easter Bunny and the Easter Bunny reminds me of Santa…

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Easter.  Ham.  Easter Eggs.  Jelly Beans.  Marshmallow peeps.  Chocolate Easter Bunnies, (see picture.) AND the EASTER BUNNY!!

(Spoiler Alert:  Do not let anyone under the age of 7? 9? 12? read any further.)

 

I am sure that most of us of a Christian faith believed in the light, magical myths of the Easter Bunny, the Tooth Fairy, and Santa Claus.  Bah Humbug!

My realization that there was no Santa Claus happened on the day before Easter when I was seven years old.  Friends and I were playing hide and seek in our house, and my hiding space of choice was my mother’s closet.  I opened the door and plopped in…right on top of a cellophane wrapped Easter basket!  I could feel the jelly beans fall out, trickling down my legs, and the weight of my body squishing the basket with a sickening sound.  As the marshmallow peeps were flattened, my childhood fantasies vanished before my eyes!  It was only reasonable to assume if my mom pretended to be the Easter Bunny, then the Tooth Fairy and Santa Claus were also non-existent.

This was actually a good realization for me.  For many years I had questioned Santa’s fairness.  If he was omnipresent, then how did he not know what I wanted to Christmas?  Even when I sat on his lap and told him…repeatedly…and wrote letters…repeatedly…he still did not bring me that all important, desperately desired, Barbie Doll for which I had asked. The Santa who came to my house had always disappointed me.  Having parents who were obsessively frugal, Santa would bring me unexciting gifts…a new toothbrush, a t-shirt, hair ribbons, and small bottles of shampoo (which I later learned came from the times my father traveled for work and stayed in hotels.) One year I even got 3 pairs of underwear that were much too big, but, judging from the price tag which Santa had neglected to remove, they were on sale for an unbelievably low price!   As a child, I could never understand why my friends and classmates received wonderful gifts of not only Barbie Dolls, but Barbie houses, Barbie cars and tons of Barbie accessories.  They would receive many, and I longed to own just one… but it was not meant to be.  When playing with my friends, they were always kind enough to share “Midge”, Barbie’s “best friend”.  While I appreciated this, I still felt resentful of their good fortune.

It wasn’t until I realized that Santa Claus did not exist that I understood that my parents had purchased all of those “gifts”.  As my childhood revolved around my dad’s “crazy” obsessions, I suddenly understood the significance of the gifts.  It wasn’t that Santa didn’t love me, or that I was somehow less worthy than my friends, or even because my good behavior wasn’t appreciated, it was because our family life was very different than most other families. And I took some solace in the fact that my dad, on his work trips, was thinking of me when he brought home the shampoos.

The whole concept of “Santa” has been a difficult one with my children. My oldest son, Francis, who is blind, hated the thought of having a stranger he could not see come into his house on Christmas Eve.  It was the one night of the year that I let him lock his bedroom door.

One year, I made the huge mistake of hiding the gift of a Little Mermaid comforter set underneath Dinora’s bed.  When she discovered it, she became hysterical, screaming that Santa had been in her room and he could have hurt her!  (She was going through a particularly rough phase with PTSD where she was seeing apparitions of “Bloody Mary”, so her sensitivities to having Santa in her room were heightened.)   She was only five at the time, and the only way I could calm her down was to admit that Santa did not exist, which caused her to cry even harder at the loss of this icon.

Steven, with his autistic tendencies, never did admit that Santa existed.  He was used to his strict schedule, and gifts from a stranger were not a welcome change.  He would wake  up every Christmas morning, walk by the Christmas tree under which the gifts sat, go down to the kitchen to grab breakfast, and sit in the family room to watch The Animal Planet on television.  It was his familiar routine…he never did acknowledge or look at his gifts. (In fact, to this day I have the SAME bag of gifts.  I bring them out every Christmas Eve, and pack them up every Christmas Day, only to be brought out again the following Christmas.  It is very selfish to say, but I have saved a LOT of money by not buying him gifts!)

Angel, my son with Dissociative Identity Disorder, (multiple personality disorder) had a great time each year developing his very eclectic request for gifts to satisfy his many “parts”, male, female, baby, toddler and his appropriate age.  I am sure that not many other boys asked for a complete manicure set along with baby rattles, Superman and Spiderman toys, and a complete bow and arrow set, (don’t ask…)  The problem that developed was that Angel had finally begun to trust me, a conviction he had previously  not held in his four other foster placements. Everyone else had lied to him and let him down.  But here he was in our family with a family he could finally trust, a family that would not lie to him, a family in which he felt safe.  When he found out that Santa Claus was a lie, he felt devastated, furious, betrayed, conned, tricked and misled.  This lie has left an indelible mark on his life, one which he continues to discuss with a counselor.  Every single time I have gone into a therapy session with him, the fact that I am a liar comes up, and that lie is always about Santa Claus. While it is easy for us to say “just get over it”, for him, it has been impossible.   If only I knew then what I know now, I would have done things very differently.

Marie, I am embarrassed to admit, was a young teenager who STILL believed in Santa Claus.  Learning from my experience with Angel, I have never perpetuated this myth on her, but she came to live with us with this belief.   Because Marie is deaf and developmentally delayed, she had few opportunities to “heard” or learn that Santa is not real. This became very apparent to me last Christmas.  On Christmas Eve I put out the individual bags of gifts from “Santa”, which included one expensive item for each child, (a DVD player, Gameboy, camera and so forth.)   On Christmas morning, Marie woke up before all of us and deftly went through the bags, taking out all of the expensive items and putting them in her bag, leaving the other children with only minor items.  She excitedly showed me the wonderful bag of gifts Santa had brought; HER gifts, along with the valuable gifts from everyone else’s bag.  I was mortified to think she would be so selfish, and I told her so!  I told her that there was no Santa Claus and that I had bought the items and they were not all for her.  She tried in vain to argue with me that Santa left them all to her because she had been good, but both of us knew better…

So, this has been a long winded way of saying I DISLIKE SANTA!!!  While he may be a wonderful myth to many, for me and my children, he has been nothing but trouble. BAH HUMBUG!!!!!

The Easter Bunny?  Hey, SHE’S okay…

 

 

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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/

 

Category:

ADHD, adoption, autism, Children, deaf, DID, disabled, Easter, Easter bunny, family, foster care, kids, life, mentally ill, news, OCD, parenting, PTSD

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I Won’t Wear That to Church Anymore

I’m just returning from church.  I go to an inspiring, welcoming church, which I love!  Everyone is friendly, and we make a special effort to include people with disabilities.  We have pew cut-outs throughout the church for people in wheelchairs.  (After all, just because you are in a wheelchair does not mean you want to be relegated to the back row, or, even WORSE, the front row.)  We have a sign language interpreter and large print materials for the church service.  If a person who is totally blind attended, we would no doubt get the materials in Braille.  People with developmental disabilities, as well as people with mental illnesses are welcomed with open arms.  Having the children I do, it has been a God send (literally) for our family.

The congregation members help out during the service in many roles, and today I was helping to serve the Wine.  The people serving communion stand on a step while serving the bread and wine.  Learning from an earlier experience when I fell while trying to get a group together for a photo, I always firmly grip the hand rail while walking down the few steps. (Falling while taking a picture is understandable, but more care needs to be taken with the wine. I am sure it would stain the carpet terribly!) When offering the wine to the congregation members, I frequently have to bend over because I am tall and on a step, and they are often shorter.  Today, after I bent over the first time, I noticed that my shirt parted from my body in the front, and everyone had a clear view down to my belly button. (Well, they COULD have seen my belly button if my big breasts had not gotten in the way.)  I was mortified!  While I do not embarrass easily, once I notice something askew, of course I have to fix it.  So, I did the only thing I could do under the circumstances; I squatted for each person.  Do you know how incredibly hard it is to hold a squat at one particular level and then move that squat up or down depending upon who was next?  If I were athletic, it may have been easy.  But I’m not…    I felt like one of those baby crib toys, all scrunched up (squatting low) and then being pulled straight, (standing tall) and while music plays it slowly moves up to the low squat again.That’s the way I was today; up and down and up and down all to the beat of the choir’s music.

I will never wear that shirt to church again…

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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/

Category:

adoption, autism, blind, church, deaf, DID, disability, humor, humorous, kids, mental health, mentally ill, parenting, spiritual

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Oh NO! More SNOW!

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Another snowstorm!!!! I completely understand why older people move to southern states when they retire. Winters are COLD!  My fingers get chilled just thinking about it, and the snow keeps piling up!

I do not enjoy the winters as I used to.  I remember pre-children when my husband and I would go skiing.  One day it was 10 degrees below zero. We were all excited it was so cold because that meant that the ski slopes would not be as crowded and we would not have to wait in line for the chairlift.  We bundled up with layer upon layer of warm clothing with not an inch of skin showing lest if freeze and fall off. We skied all day.  At one point, we stopped at the top of the mountain and viewed the surrounding area.  With the sun blazing down on the shiny snow, we saw snowcapped mountains in the distance, little villages, frozen lakes and the ant specks that were cars, and I was overcome with awe for nature.  It’s a good thing this memory is frozen in my mind because these days, you’d never get me on top of a cold, frigid mountain again!

Several years ago, after several major snowstorms, there was an 8 foot pile of snow made by the snowplow. The kids managed to shape it for sledding, and they had great fun sliding down.  At one point, Steven climbed to the top of the pile and all of a sudden he disappeared!  He had fallen deep inside the snow pile! It was like he was buried in an avalanche! Another heart stopping moment for me.  Fortunately, we managed to pull the snow from around the top of the pile until we could pull him out.  He was laughing because it was such an adventure, and he begged to do it again.

Several years ago, my husband received an old snowmobile as a “gift” from a friend.  One day, he was riding it in our large backyard with my son Steven sitting in the front of him.  Raymond decided to Steven drive.  Excitedly, Steven turned the handlebars to give it gas.  The snowmobile took off in a lurch and my husband was thrown from the back of it in an amazing double somersault. (A “10″ if he were rated in the Olympics for gymnastics off the back of a snowmobile.)  Steven and the snowmobile zoomed on, headed right for the shed in the backyard.  His life flashed before my eyes and I thought “This is what it feels like to see your child die.”   My heart was in my stomach and I felt like I wanted to vomit and scream at the same time. Fortunately, unbeknownst to me, if you let up on the handlebars, the machine stops. This is exactly what Steven did. Then he turned around and noticed that his father was missing! And he had stopped within a foot of the shed. He did not realize how serious it was, and laughed at my husband, still feet up in the snow. It took a while for my heart to start beating again, and I vowed Steven would never again be allowed to drive a snowmobile.  So, my husband did the only smart thing a father could do…he sold that snowmobile and he bought 2 news ones so we could go snowmobiling as a family!  Ugh! We trekked up to New Hampshire to go for a nice, winter vacation. Because Steven could not drive, and because at this time Angel was also living with us, I was forced to go along as the second driver.  If you have not ridden on a snowmobile, the closest description is as if you are riding motorcycle on skis.  In the ice.  And the cold. And did I mention the ice? Because I had never even ridden a motorcycle, I was very nervous. I started the machine, jerking it as Steven had done when he tried to drive it. Fortunately, Angel had his arms firmly wound around me and he didn’t fall off.  I was so scared and it was so awkward to drive that I could only creep along at 5-10 miles per hour, much to my husband’s dismay. (Dismay is putting it mildly.) To make matters worse, my husband did not choose the nice, empty, safe fields to ride in.  NOOOOOO!  He chose the skinny, trees whipping by your head, narrow snowmobile paths with TRAFFIC COMING IN THE OTHER DIRECTION!  That one day of snowmobiling was the scariest of my life.  Once we began on the trail, there was no turning back!  My hands were shaking, my body was sweating even though it was freezing out, and my imagination had my head being whipped off by a tree branch.  I did enjoy the nice, friendly wave the snowmobilers in the opposite direction were giving us, and each time we passed them, my hand went up to wave back.  (I later learned that the opposing snowmobilers put up the number of fingers for the number in their party.  3 fingers for 3 people, and so forth.  I realized that each time I waved, I was telling them that we had 5 people in our party.  Oh, well, I won’t do that again because I won’t do THAT again…go snowmobiling.  Fortunately, Angel did not enjoy it either, so he and I spent our time shopping at the factory outlets while Raymond and Steven went out on the trails.

At home, there is a pond in our backyard.  Marie loves playing outside in the cold, going ice fishing, building snowmen, and, most of all, playing hockey.  She dresses warmly from head to toe…black snow pants, black jacket, a hat which covers most of her face, several pairs of gloves topped with hockey gloves, and boys hockey skates.  She takes her hockey stick and skates around the lake to the various hockey games trying to get an invitation to play.  From looking at her all bundled up, you cannot tell if she is a girl or a boy.  She is not verbal, so they cannot tell from her voice.  (She points to her ears for them to know she is deaf.)  She would normally use sign language but with hockey gloves this is next to impossible.  They always let her in because she is a good player.  If one group stops playing, she will skate around and find another group.  She reminds me of a female Batman for hockey…slinking into games, her identity unknown…showing up out of the blue when a team needs a player!

Winter is alive and well with my kiddos, who enjoy it as I did when I was a child.  They love the snow and all the activities, but now thatI am older I get chilled easily…(picture granny in the rocking chair with a blanket around her.)  I sit by the picture window, near the fireplace, drinking hot chocolate with mountains of marshmallow and I watch them having fun outside.  As parents, we all know that watching our children be happy and have fun is even more fun than doing it ourselves. I am a happy mommy.  Let it snow!

^^^^

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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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!

****

 

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

******

 

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

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“All she does is screech and say No! No! No!”

 

The above description fit me perfectly.

Yes, me… perfectly.

Marie came to live with us at the age of 6.  She had been picked up off the street at 4 in the morning, barefoot, in her underwear, looking for food.  We took her in as an emergency foster placement because I knew American Sign Language and Marie was deaf. She looked like a wild animal…disheveled, matted hair, flaming eyes of distrust, so filthy everywhere that even an hour in the tub did not wash off all the grime.  Her teeth were dingy yellow, and her body was emaciated.  Being the “good” middle class mother that I was, I cleaned her as best I could and then I took her to buy some clothes.

In the store, she immediately disappeared.  I impulsively called her name, (as though she could hear me.)  When I finally found her, she was in the candy aisle, shoving candy bars into the pocket of her pants.  I screamed,  “No! No! No!”  She looked at me and ran in the other direction.  I finally tracked her down in the pet aisle, just as she was about to open the cage to the hamsters.  I screeched and said “No! No! No!”, and proceeded to grab her, pick her up, empty the candy bars in her pocket, and tote her back to the car without buying anything. If I thought this would teach her a lesson, it did not.  She was not used to buying anything, so she could not appreciate something she never had.

We ate out for lunch at McDonald’s.  Marie ate her sandwich and drank her milk and threw the wrapper and container on the floor.  No! No! No!

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The next day I gave her a stern talking to (“signing to?)  and told her that we were going shopping for clothes and that she needed to stay with me. As though THAT was going to work!  As soon as we got into the mall, a place she obviously had never seen before, she skirted UP the DOWN escalator, laughing with glee.  Mortified, I screamed and said No! No! No!  and then watched in horror as she slid down the banister of the escalator.  Big scream! No! No! No!  Home we went. 

Once at home, she got an orange to eat.  She grabbed the butcher knife to cut it and I screamed and caught her hand just as it was about to demolish the orange. No! No! No!

The next day we were going to take a walk to the library.  She broke free from the grip I had on her hand, and ran across 4 lanes of traffic. Scream! No! No! No!

Later in the evening, while watching television, Marie climbed onto my husband’s lap, where she attempted to rub his “private parts” and kiss him.  SUPER BIG SCREECH!  No!  No! No! Oh!  This child was so “bad”!  WHAT was I going to do with her?

At the end of the week, I went to Marie’s school where she was part of a dance performance.  I was glad to be able to be there, as her birth mother had never been seen at the school before.  I watched with pride as she danced and twirled, often sneaking a peak at me to see if I was looking.  When the dance was over, I saw her talking (signing) with another student who commented that Marie had a new mom, and how did she like her? Marie looked over at me for a minute and crumpled her nose, telling her that all I ever do is scream and say No! No! No! I was shocked.  I had never thought of it before, but she was right!  I was so busy chasing and correcting her that it would seem like all I did was scold her.  And what was I scolding her for?  For what I, as a middle class mother, think is wrong.  I had never taken into account that Marie had been raised to do all of those things…to steal food, to take what she wanted from stores, to litter, to be sexually promiscuous (at the age of SIX!) and to have no worries about safety, thinking she was invincible.  This young child, who had lived on the streets and managed to survive without any parental care, just parental abuse…WAS invincible! She did what she needed to survive.

I was so embarrassed. Embarrassed because I was judging her by my standards and not stopping to think of what her standards were.  I vowed never to scream No! No! No! again, but to explain things in a loving manner to her.

We do not steal.  If you want something, I can probably buy it for you.

We do not run into streets with cars, use butcher knives, or slide down escalators.  It is not safe.

We do not just throw garbage on the ground, but in our family we pick it up and put it in a garbage can.

And, most of all, there is no need to make money by being “friendly to men”.   We have plenty of money so you don’t have to do that.  And it is not fair that you had to do that instead of just being a little girl. And you never have to do that again.

Marie did not change overnight, but each time she would fall back onto old habits such as stealing or being unsafe, I would lovingly explain why she no longer had to do that.  She had a family that loved her and it was our job to keep her safe.

Then there was the time when, walking in the mall with a soft drink in her hand, she unwrapped the straw and threw the paper on the ground. My eyes widened, and she laughed when she saw my reaction.  “I was just teasing you” she signed.  “I know I don’t litter in this family….” 

No more screaming from me…

 

 

Link to my book  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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The Dance of the Snake Goddesses

Forgive me for re-posting this from a few years ago, but I thought you might enjoy it as it is a New Year’s Eve story…

snake-Dev-Khalsa

photo from Ophidiophobia – Fear of Snakes (Picture by Dev Khalsa)  honorslounge.com

A very conservative lawyer friend had a very conservative lawyer wife who had taken up belly dancing.  She and 2 friends were so skilled in this talent that they were chosen to be performers for a large audience for First Night, the annual New Year’s Eve celebration in the city.  For an added “twist” to their act, my lawyer friend asked if his wife could borrow one of my son’s 5 foot long boa constrictors for their dance.  I had plenty of reservations, but I said okay. (It is always good to keep a lawyer friend happy because you never know when you will need a lawyer’s help.)  The ladies came to our house, and practiced with the snake while my son, Steven, who is very familiar with snakes, supervised.  The practice went very well, and the ladies excitedly decided to bill their act as the “The Dance of the Snake Goddesses.”

Well, New Year’s Eve came and I reminded Steven that we had to take the snake to the performance hall for the act.  Steven, who has Asperger’s and an anxiety disorder, was mortified!  There was no way HE was going to go to a large hall where there were a lot of people!  He handed me a pillowcase to put the snake in, and a bottle of alcohol “in case it bit someone”. He promptly took off on his bike peddling away to destinations unknown to me, (but far away from  First Night appearance.)  I started to panic!  These excited dancers were billed as the “The Dance of the Snake Goddesses” and they would have no snake!  Feeling extremely obligated to provide them with a snake, I decided to bring the it myself.  I had not minded the snakes when they were locked in the glass tanks, but somehow I was going to have to get up the nerve to actually take the snake out and put it in the pillowcase.  My hands were shaking as I undid the lock and took the cover off of the tank.   It looked docile enough, just lying there.  I reached in and managed to push it into the pillowcase using a long sleeved pot holder, proud of myself for not having to touch it.  Maybe I’d be okay! I tentatively carried the pillowcase to the living room, but I had miscalculated by not securing the top of it.  The snake’s head popped out, I pushed it back down.  It popped out again, and I pushed it down again.  This time it was stronger and its head came our farther.  When I tried to push it back in, it wiggle away from me and the whole snake came slithering out of the bag, which I promptly dropped.  There, on the floor of our living room, was a slithering 5 foot long snake!  I screamed.  My husband came to see what was going on, and he jumped up on the couch and screamed.  Even though I was shaking and my first instinct was to smash the thing over the head with a broom, I remembered  my commitment to our lawyer friends.  I gathered up my courage and, using the broom gently, I nudged it back into the pillowcase, this time immediately tying the top into a knot.

I was still shaking from this experience as I drove to the city with the wriggling pillowcase on the seat next to me.  I was feeling tremendous relief that I had at least caught it and was on my way to the performance. I even felt a little sorry for it, and turned the heat all the way up in my car so it could be warm.  (It had started to snow outside, which would mean there would be a larger than usual audience for an inside performance as the outside First Night performances would involved standing around in wet snow.  Great!  A bigger audience for what was sure to be a Snake Goddess fiasco!)

When we got near the theater, I put the pillowcase inside my coat to keep it warm. (MY I was brave!)  There was a line around the building waiting to see the performance.  I went to the head of the line, and quietly said to the guard at the door, “I have the snake for the performance.”  In his loudest voice, he parted the crowd by saying “Make way for the snake handler.  Make way for the snake handler!”  I wanted to hide!  As a 55 year old shaking, nervous, dowdy woman, I no more resembled a snake handler than a chipmunk would resemble Santa Clause.

I managed to get back stage with the snake and the belly dancers were very excited.  They carefully took him (her?  I couldn’t tell the difference,) out of the bag and began to practice.  By now I was shaking so badly that my stomach was in knots.  I was holding the bottle of alcohol (“in case it bit someone”.)  I was on the verge of tears, both from relief that I’d delivered the snake in one piece, but also fear that it would bite and there would be blood and screams and lawsuits.

The audience in the large theater was packed, standing room only.  The music for the dancers began.  They dramatically began the act hidden behind veils, with the snake on one woman with the head at one hand, draped across her back, and the tail on the other hand.  They did a dramatic dance, dropping the veils at different intervals for the audience to get a glimpse of the snake.  I could hear  “ooooh”  and “aaaaaah” from the audience.  I was hoping the snake wasn’t going to slither down and into the audience causing mass panic,  emptying the audience out into the street, or, worse yet, go around biting audience members with me following along with my bottle of alcohol. (Then I’d really need a lawyer for the lawsuits!)

Then something strange happened. The dancers dropped their veils, and the snake actually seemed to join in the dance.  Soon its head was wriggling in time to the music, its tail was swaying around, and it seemed to be having a grand old time!  It began to slither in time to the music (a pure coincidence I’m sure,) from one dancer to the next.  It was an amazing sight, the graceful gyrating dancers and the graceful gyrating snake, all moving in time to the music.  Mesmerizing. Amazing.  The act finished to a standing ovation, and darn it if it didn’t seem as though the snake bowed his head in response to the clapping from the audience.

After the show, the dancers gave the snake a few affectionate pats and back into the pillowcase it went.  I tied it in a knot, put it under my coat, and carried it back to the car.  I felt as though I was going to cry, but this time it was tears of relief.  I don’t know how I get myself into these situations, but, again, I’d come through it unscathed, with a little more respect for the reptile in the pillowcase next to me!

 

Thanks for reading.  If you want to read more here is the link to my book:The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

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Beyond One’s Own Problems

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I work with a social/educational/recreational group for teens with disabilities.  When first getting this group together at the beginning of the school year, I asked them what they wanted to do as part of our program.  Every single one of them said they wanted to “help other people”.  Here are students with a variety of disabilities and medical needs, and they wanted to help others! They were mature enough to look beyond their own problems to the problems of others.

Various suggestions were tossed about; opening a soup kitchen, visiting with the elderly in nursing homes, working at the local pet shelter, and so forth.  I suggested the easiest thing to do would be something we could do as a group within our program.  They chose making sandwiches for the homeless.

Every other Saturday we meet.  Yesterday we had some social skills activities, some recreation, (does anyone remember the game Simon?), and then they all baked cookies and made sandwiches.  As they were working, they chatted happily, teen music playing in the background.  When one song came on, they all broke out into what I call “dancing like you are riding a horse”.  (I am sure all teens will know what I am talking about, even if parents don’t.)  As soon as the song stopped, they all went back to their sandwich making. It was hilarious!

They worked as a team and made 165 sandwiches and twelve dozen cookies. As they worked, they talked about who might get to eat them, what kind of bad luck may have fallen upon that person and so forth.  They talked with much empathy, and not once during their conversation did they mention their own problems.  They were caring about the problems of others.

After the sandwiches were made, I drove up to Traveler’s Aid, a local spot where the homeless hang out.  The kids got out of the car to bring the sandwiches and cookies in.  They helped each other.  One girl in a wheelchair held a box of sandwiches on her lap while a girl who is blind held onto the wheelchair as her sighted guide.  (Instead of a using a guide dog, she was using a guide wheelchair!)  I stood back as they went into the building and delivered the goods. They were so proud.  The large group of people milling about parted like the Red Sea, and left them easy access to the front desk where they would be dropping the food off.  They walked and wheeled to the front desk which, fortunately, was wheelchair accessible.  The crowd murmured appreciatively, politely, thankfully.  The kids faces beamed as they turned around and came back to the van.  They were no longer disabled, but capable of helping others.  Suddenly, their problems were not as bad as the people who thanked them; people without shelter and food.

 

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

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