Posts tagged ‘inspiring’

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/

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ADHD, adopted, agents, angel, Aspergers, author, blind, book agent, caring for parent and children, child deaf, childhood, Children, children who are deaf, deaf, deafness, disabilities, Disabled children, education, family, foster care, frugal, happy, happy childhood, inspirational, joy, kids, life, love, lucky, mental health, mentally ill, news, obsessive compulsive disorder, OCD, optimistic, play, psychology, publishing, Rubella, sibling with disability, special education, spiritual, travel, vacation, visually impaired

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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…

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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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Aspergers, autistic, Children, children with disabilities, disability, disabled, family, humor, inspirational, kids, life, news, snakes

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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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Children, children with disabilities, disability, disabled, humor, kids, life, news

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I Will Try not to Cheat at Bingo in 2013

I have several New Year’s Resolutions:

I will try not to cheat calling Bingo anymore.  When I take groups of either adults with disabilities or children with disabilities on bus trips, a favorite game to play on the bus is Bingo.  While riding on the bus, I often drop a Bingo ball or two and I do not bother to pick it up, (I easily get motion sickness.)  So,  I will call the games missing that number but not tell anyone.  I figure everyone has the same odds of having that number on their card, so it is equally fair for all of them.  To avoid this problem in the future, I am going to get Bingo cards, (like playing cards,) which many nursing homes use.  I will try not to drop any cards….

I will try to keep my house cleaner.  My house is generally “picked up”, but I wouldn’t call it clean.  There are sometimes little cobwebs in the corners of the ceiling and little mouse droppings on the floor.  (Ha!  Ha! That part isn’t true…just wanted to see if you were paying attention.)

I will try to watch more educational shows and less reality shows, (however I get to keep Survivor and Amazing Race.) Although, I  must say, that watching some reality shows makes me think my family is “normal”.

According to my son, Angel, I need to stop trying to fit my large, large van into tiny, tiny spots. It looks kind of funny when we have to all crawl out the back door, (because we are so close to the next car we cannot open the doors.)  We have to  jump to the ground because it is so high. Looks like the joke car where the clowns keep coming and coming and coming…       Ah….I guess I’ll try to give up such fun for the upcoming year…

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My children and I will eat more vegetables.  I saw a book about hiding vegetables in other food items, such as spaghetti sauce. I wonder,however,how much spinach you can actually hide in there before it turns green?

I would love to do more public speaking this year.  I spoke at several regional and state conferences last year and I loved it! If you are a parent, you know that you love to talk about your children and have people listen. Public speaking multiplies that 100 fold. (I do have to a speak from behind a podium, however, because I have to cross my legs when I laugh so I don’t pee. And I laugh quite a bit!)

Although I CAN cook, I don’t because my  husband loves to.  I once made tuna noodle casserole and my children couldn’t believe it because they had never seen me cook.  I vow to cook at least one vegetable laden meal a week when my husband is working late.  No more take-out pizza for us!

My annual resolution, which has worked well for me, is to love and support my family unconditionally, and to be kind and caring to others.

Happy New Year everyone!  May your life be filled with as much happiness as mine!

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Children, disability, disabled, family, humor, kids, life, news, Uncategorized

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Little Toe Socks inside Insulated Socks

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My daughter, Marie, was chosen for a special snowboarding program for students with psychiatric disabilities.  A team of trainers from a local mountain have donated their time, and the mountain has donated the snowboarding equipment to coordinate a comprehensive, six week snowboarding school.  Marie, who loves the snow, skiing and snowmobiling, was thrilled to be selected.

I was thrilled for her to be chosen, not only because it will be a great program for her, but because for Christmas it also gave me something to buy a child who “has everything”.  My husband and I visited a local winter sports store that had a 75% off sale because of a recent fire, (yay!  I love bargains!))  I delighted in choosing snow pants, little socks with the toes in them, which are then worn under insulated socks, little gloves with fingers in them which are then worn under insulated snow mittens, insulated underwear, (tops and bottoms, of course,) a ski face mask, a warm winter hat with a brim, and, most importantly of all according to my husband, a snowboarding jacket.  He explained that snowboarding jackets are much longer than ski jackets because you spend so much time on your butt!   I was delighted with our purchases, although I later realized that I had forgotten the ski goggles.  We packed them all up in a Christmas bag which Marie opened to great excitement Christmas morning.  To say she was thrilled was an understatement.  She beamed.  She glowed.  She was going to be a snowboarder.  At the end of Christmas day, we packed up all of her presents and brought her back to her residential school.

In order to add a little excitement to her Christmas vacation, I took her for a weekend in Boston.  After I picked her up, we stopped at a Panera Bread for lunch before we boarded the train for Boston.  I was so surprised, (shocked, embarrassed) that she was dressed in ALL of her snowboarding gear, such as in the above photo I took of her.  I told her to take the mask off or she would scare little children away.  She looked around and saw no kiddos running from her screaming, and she told me she was fine.  I was mortified, (which is not an easy feeling for me.)  The only thing I could be thankful for was the fact that I had forgotten to buy those ski goggles, because she would have certainly been wearing them, also.

While in Boston, we had planned to go to the Aquarium, but she asked to go ice skating instead, which made way more sense than the aquarium. (I could envision the fish swimming away from her in terror!)  Unfortunately, no one had given ME snowboarding equipment for Christmas, so I only had on a light winter coat.  My plans for the weekend were to run from metro stop to metro stop doing activities indoor.  I was dressed for fish viewing and shopping, NOT for the cold weather.    But, as most mothers can attest to, I wanted to make my daughter happier, so off we went to the Frog Pond Skating Rink.

Being a little bit unsteady on my own feet, I convinced her to skate by herself and I would wave at her every time she skates by.  That’s LOTS of waving, by the way.  But there was happiness in my heart because every time she came around the corner, she would search for me, smile broadly,and wave.

Marie then demonstrated what Angel had demonstrated on Christmas Day.  She started helping people!  She would look for a child, unsteady on his/her feet, and then she would skate backwards and hold his/her hands.  Around and around the rink she would go, sharing her skating skills to help others learn to skate.  Once the child was steadier on his/her skates, she would go around looking for another person to help.  Then, to my amazement, she went up to offer her assistance to a young man with a severe developmental disability.  His skates were turned inward, ankles almost on the ice.  She helped him stand up, and, with his hands on her shoulders, she skated backwards pulling him.  Because of his disability,it was obvious that he was not going to be able to skate independently with any degree of skill.  So Marie stayed with him for over an hour.  They both laughed and when he was called off the ice to go home, he hugged her and smiled.  He apparently could not talk, but she knew he was saying thank you.  She turned to find me, and with a big smile on her face she waved.  I waved back.

I froze that day…my toes were not covered by little toe socks and insulated socks, my hands were not covered little finger gloves and insulated gloves.  I was not wearing insulated underwear, or snow pants, or a warm hat with a brim, or even a snowboarding coat which would have covered my butt so I would have been warm. However, while my body may have been experiencing hypothermia, my happy heart was keeping me warm.

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Children, children with disabilities, disability, disabled, family, humor, kids, life, news

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I Looked in the Mirror and I saw a Homeless Person…

My husband and I decided to go to our little cottage in New Hampshire for the weekend to rest up for the upcoming holiday festivities.  I filled the car with all of the Christmas present in order to wrap them in peace and quiet.

On Friday morning, we got up at 5AM so Raymond could spend a few hours working in a town a few hours from where our house is.  Those who know me or who have read my book know that I get carsick easily, so for the ride I generally spread out in the backseat with a few pillows and comfy blankets and snooze.  I was still snoozing when he got out to do his job, and, I’m embarrassed to say, I slept for another three hours!

When I woke up, I was desperately thirsty, and of course had to go to the bathroom.  I slowly sat up and looked out the windows, spotting a McDonald’s nearby.  I was joyous.  A hot cup of tea! A bathroom!  I maneuvered myself out of the backseat, threw on my husband’s old coat, (which looked to be warmer as it was snowing heavily outside,) and started walking toward the gleaming golden arches.  (Okay, that last part was a lie as they do not have golden arches anymore, but I was still half asleep, so I can’t be blamed…)

I have been suffering from an inner ear disorder lately; one which cause my balance to be “off”.  I wobble back and forth, and sometimes stumble and trip unless I have something to hold onto.  As I walked to McDonald’s, of course I was in open space, so my walking resembled someone who was drunk.   Embarrassed by my weaving, I snuck around the back of the restaurant and entered through that back door near the bathroom.  Once safely inside, I looked in the bathroom mirror, and I gasped.  A homeless person stared back at me, and it was ME! (And I mean no offense to the homeless…) One side of my head was flattened, complete with pillow marks on my face and a line of drool from my mouth.  The other side was fluffed straight out like half of a Bozo the Clown.  I wet my hair, and looked in the mirror again.  I looked like a drowned rat!  I also noticed that Raymond’s coat was way too big, had a pocket that was ripped, and had oil stains on it.  I was horrified!  Not so horrified, though, as to sneak out and go back to the car.   NO!  I wanted that caffeine too badly.  So, I wobbled out to the service counter, gathered all of my dignity, and ordered a hot tea.  It was poured and put on the counter, and I gave them my credit card to swipe.  (Isn’t crazy in this day and age that I always use my credit card for everything?)  The card was declined.  There I was, standing there at the counter, looking like a drunk homeless person, staring at the server like a deer in headlights.  What?  My charge is declined? I was mortified.  He was not going to budge.  No money….no tea.  With a huge sigh of relief I looked in my wallet and found that $20 bill hidden in that secret compartment in case of an emergency.  This definitely qualified…

I took my prize and wobbled back to the van, where I settled down again in the back seat, happily drinking my tea.

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adopted, Children, deaf, disability, family, food, foster care, humorous, inspirational, kids, life, news, parenting, stress

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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 3rd 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 am Not Very Good with Water Crafts

I work with several recreational groups for children. I am great arranging games, doing social skills activities, helping them   cook simple meals, go out to the movies, bowling and other such activities.  The one area where I am terrible is in doing crafts.

For an October program, we had a great day; went to a corn maze, picked pumpkins, made pizzas for lunch and then…decorated pumpkins. What could go wrong with that, you ask?  Well, I was in charge of it, which was the first mistake. The second mistake was in lieu of having the children of various ages and disabilities use a knife to cut into it, I chose to have them decorate the outside. Not with just stickers…no, THAT would have been too easy! We were using large google eyes, yarn for hair and fake “gems’ for the smile. Very tactile.  Lots of bling.  Lots of glue.  Lots of the WRONG glue…the yarn hair drooped into the eyes, which drooped down towards the mouth, which also drooped down into a frown.  They were very sad looking, in more ways than one.  I excitedly told them to tell their parents they created a melting pumpkin face.  They were thrilled they were so clever.  I was mortified the glue did not hold the items in their designated places.

I had another glue mishap a while ago.  I used jars of baby food and the kiddos glued an icon into the jar top; Mickey Mouse, Spiderman, Disney princesses, and the Littlest Mermaid.  While it dried, they added water colored a light blue, and then half of a jar of sparkles. We were making snow globes, of course.  However, when they tightly screwed the top to the bottom, the icons  simply drifted off into the water.  I had used the wrong glue AGAIN, not water proof.  The little icons were freely floating in the sparkly water.  They could understand why they Littlest Mermaid was swimming, and Spidey could have been flowing through the water to save someone, but poor Minnie and Mickey were just plain drowning!  

My last craft humiliation also contained water.  A few weeks ago I had the kiddos make Thanksgiving centerpieces using real flowers in a beautiful bowl.  I’m no slouch when it comes to common sense, so I knew enough to purchase those green hard spongy things in which the kids could stick the flower stems. First,they glued colored (fake) leaves on the outside of the bowls. Then they started sticking the flowers in one by one.  We followed a basic pattern, a tall, bushy yellow one on top, assorted yellow and orange ones arranged downward, and plenty of greens to finish it off. They put it in the bowl and we filled it with water. They all looked WONDERFUL. I was so proud of my students and their creations,which they showed to their parents when they picked them up. We all know that moms and dads are famous for “ooooowwwwing” and “aaaawwwwing” over each and every creation their child makes, but I knew for sure these were the real thing.  

After the students left, I went back to look at the flower arrangement I had done as a sample.  The flowers were listing to the side.  Curious because they were stuck safely into that green hard spongy thing which should have held them straight…IF IT HAD BEEN GLUED PROPERLY TO THE BOTTOM OF THE BOWL!  GLUE!!!!! Why hadn’t I known that it would FLOAT if not glued down?  Horror visions of the kiddos flowers floating on their side, sitting on their Thanksgiving tables filled my head.  Oh, NO! I am staying away from glue and water crafts from now on!    

 

 

 

 

 

 

 

 

 

 

For any new readers, I am attaching the review of my book by Readers Digest:

Nov 02, 2012 11:04 AM EDT

What to Read After a Hurricane

by Dawn Raffel

Shortly before Hurricane Sandy came to my town, flooding my house and knocking out the power (which is still out), I had the good fortune to download The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane by Linda Petersen.

Her story begins not with her children but with her own childhood spent traveling the country in the backseat of her parents’ car (her perpetually restless dad had post-traumatic stress disorder from  WWII), often with very little money and few provisions. Where someone else might have seen deprivation and isolation, Petersen viewed her unusual childhood with a sense of wonder and gratitude. After marrying young and giving birth to a son who was legally blind (and who went on to earn a PhD on full scholarship), Petersen and her husband adopted four more special needs children and fostered many others.

Her honesty, wit, and terrific storytelling make this a book you want to read rather than one you feel you should read. So there I was, swiping pages on an iPad in the dark in a blackout… I couldn’t have picked a better book for putting it all in perspective.

http://www.rd.com/recommends/what-to-read-after-a-hurricane/

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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!!!!

 

If you would like to read more about my adventures in child rearing, please read the book ‘The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane”, available on Amazon, Barnes and Noble and I-Books.

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I KNOW there is a heaven.

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

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

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

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

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

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

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

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

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

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

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

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