Posts tagged ‘visually impaired’

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…

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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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“Look Mom, no trees!”

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My son Francis is amazing!  Although legally blind, he has led an incredibly successful life.  I think one of the reasons he has done so well is because he was raised without having a disability. If that sounds odd, you have to define disability as not having the ability to do what one wants in order to lead a full and happy life.  With proper modifications and technology, Francis has never been held back in any area of life.

Of course, we have chosen achievable goals when he was growing up. One of the many topics we tackled was how to fit sports into his life. Of course he could not play baseball or soccer, but he could be on the wrestling team and swim team. (He excelled and won championships in both areas.) The one sport that I worried about  was his skiing.  He learned at an early age to traverse the White Mountains in New Hampshire with a sighted guide skiing in front of him, usually his dad.  This petrified me because I was afraid he was going to ski into a tree and die. The fact that he is still alive and kicking today is proof that he didn’t, but that did not lessen my motherly concerns.

When Francis went to college at Cambridge in England, he had the good fortune to make many friends with whom he could travel all over Europe.  One day, I received a photo via e-mail, accompanied by the comment “Look, mom, no trees!” The photo was one of  Francis in ski gear, standing at the top of a ski run in the Alps.  The sun reflecting off his dark goggles was no match for the shining smile on his face.  There were no trees to ski into because they were above the tree line.  He was safe!  And, most importantly for a mom, he cared enough to send me a picture to SHOW me that he was safe.  The little cockles of my heart warmed at the thought…what a considerate son!

It wasn’t until a few months later that I saw the news of a large avalanche in that same area and three people were presumed dead.  DEAD?  I immediately remembered that beautiful picture of my thoughtful son, and I laughed.  (Yes, I laughed.)  That picture shows that my son does not have a disability because he had the same chance of dying as the skiers buried in the snow.  He is truly successful!

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Links to my book:

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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Alps, blind, Children, disability, family, happy, humor, inspirational, kids, life, mother, news, parenting, skiing, sports

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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!

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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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“Hard Pieces of Confetti”

I coordinate activities for students who are blind, and I always try to make sure that everything is accessible for them, that is, multi-sensory and in the proper large print or Braille format.  I got a little more than I bargained for last Saturday when we had a Happy New Year Party for them.  Because it was AFTER the new year, I gleefully shopped for party supplies that were 75% off.  (Gee…if I used the same theory and we celebrated Christmas AFTER Christmas, I would have saved a ton of money…but I digress…)

New-Years-Eve-Poppers-for-Kids

Knowing that the children love novel items, I purchased a large supply of “crackers” or “poppers”, such as in the above photo.  During the party I thought they could pop them overhead, and feel the confetti rain down on them.  I was mortified when the first popper was popped. It had little toys in it; a little maze, a little top, a little yoyo, and other items that were waaaaaaayyyyyyy too small for these children to be able to see and play with.  I had purchased a huge quantity of them because they were so reasonably priced, (darn that frugal shopper in me!)  When I looked at the contents, I knew it would be impossible to use them because they were not accessible.

Or WERE they…

Seeing as none of the children had noticed that first popper and its contents, I told them there was a new strategy to our popper game.  They could hold them up over their heads, pop them open, and feel  the “hard pieces of confetti” that would rain down upon them.  Excitedly, they opened the poppers as the little toys bonked them on their heads and fell soundless to the carpeted floor. “I feel it!  I feel the hard confetti!” they giggled and said delightedly, asking for more! More! More!  They had a great time at the New Year Party, and the sound of their laughter still echoes in my mind making me smile.

Thinking about it, I realized that the poppers WERE accessible.  The regular confetti in them was so tiny and light that the children were not really able to feel it as it rained out.  But the “hard pieces of confetti”, now THAT they felt!

 

 

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

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

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blind, Children, children with disabilities, deaf/blind, family, happy, kids, life, news, parent dying, special education, Uncategorized

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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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A Hug Award; My Kind of Award!

I am not one to generally accept awards.  I am pleased to receive nominations, but I do not generally post the award.  I strive to stay level headed and an every day person.  (Awards would tend to inflate my ego and I may start to sound “uppity”, which is not in my nature.)

However ,Michele Kearns who has the inspirational blog Joy Returns, nominated me for a very special award:

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The HUG Award© was initiated by Connie Wayne at A Hope for Today athttp://ahopefortoday.com, which promotes hope, love, peace, equality, and unity for all people.

The HUG Award© is for people with an expectant desire for the world, for which they:  Hope for Love; Hope for Freedom; Hope for Peace; Hope for Equality; Hope for Unity; Hope for Joy and Happiness; Hope for Compassion and Mercy; Hope for Faith;Hope for Wholeness and Wellness; Hope for Prosperity; Hope for Ecological Preservation; Hope for Oneness

The HUG Award© recognizes and honors those who help keep hope alive in our current world, which is plagued by war, natural disasters, and economic recession.  They nurture hope, in any of the above areas (in italics),  by the work they do, or in their personal lives with things such as blogging, public speaking, charity work, etc.

The HUG Award© is for anyone, anywhere in the world, who meets the guidelines and wants to be nominated for the award. Please leave a comment on this page if you are interested in receiving this award, or if you would like to nominate someone else for the award.

The HUG Award© is for people who, without giving up or compromising their own religious, spiritual, or political beliefs, are able to nurture hope and respect the dignity of all people.

The HUG Award© is for those who, without bias or prejudice, use their resources and gifts to make the world a better place for everyone.

The HUG Award©is for people who have a hope or an expectant desire that the work or talents they use in things such as blogging, public speaking, charity work, etc., will make a positive impact on the world.

These people do not have to actively use the word “hope” in their work or creative talents.  They only need be conscious of their desire to make the world a better place for everyone.

These people use their available resources–a smile, a hug, a helping hand, a listening ear, a voice, time, money, possessions, education, personality, talent, websites and blogs—to make a positive impact on the world and make the world a better place to live.

The HUG Award© is not a website or blog award.  It can be given to people in your community, at your employment, at your place of worship, etc.  Please make sure they have a copy of these Guidelines, and please don’t forget to submit their names back to this site.

I am pleased to share this award with everyone who strives for peace and to make the world a better place.  Is it such an honor, and little ol’ me is humbled.

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adopted, adoption, agents, author, child abuse, Children, church, deaf, disabilities, disability, disabled, family, foster care, happy, hard of hearing, hearing impaired, inspiring, kids, life, mentally ill, news, optimism, parenting, psychology, PTSD, spiritual, Uncategorized

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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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Angels Among Us

First blogged January, 2010

My mother passed away several months ago and it has taken me this long to write about it.  She was the most wonderful mother in the whole world, (and I am not just saying that because that is what one is expected to say about their deceased mother.)  In addition to being kind and loving, she was also very spiritual.

I remember when I was four years old and we lived in Opalaka, Florida, right behind the Hialeah Race Track.  We had a cement swimming pool in the backyard which my father built, and next to it was a palm tree my mother had planted crooked so it was growing sideways.  I had a green parakeet whose name I certainly don’t remember, and I loved watching Howdy Doody and Captain Kangaroo on our little black and white tv with the rabbit ears antenna.  My brother was born one day in March, and life suddenly changed for our family.  My brother was born with serious disabilities due to Rubella Syndrome, (supposedly my mother had been exposed to someone with German Measles.)  With a cleft palate, he could not nurse or drink from a bottle, so he was fed by a large eye dropper. He could not such on a pacifier and he cried constantly.  He was blind and deaf and was obviously going to be severely developmentally delayed. My joyful childhood was suddenly overshadowed by a sadness of which I had never seen from my mother.  I would witness her throw herself across her bed and sob. A deep sadness enveloped our family. I looked at my little brother, who looked so innocent and little to cause such a fuss.

One day, when the sun was shining brightly and Curtis was asleep, my mother called to me to come sit in the rocking chair with her.  She squeezed me and held onto me tightly, rocking  and crying.  It was a different kind of crying, though.  A happy cry, if I could describe it as such.  From that day on, the gloom lifted from our house and I went back to living my happy childhood with my new baby brother.

Many years later, when I was a young teenager, my mother shared her experience of what happened to her that very day.  The doctors had been encouraging her to put my brother “away”, institutionalize him as was the custom in those days. “Forget about him,” they said, “You can have another child.”  She could not bear to make the thought of doing this.  Then, on that sunny day while rocking in her chair, she told me she was visited by an Angel, a beautiful, bright white Angel.  She told me she could feel the weight of the Angel’s hand on her shoulder, reassuring her that everything was going to be okay.  Although the Angel did not speak, she knew what the message was.  She did not have to worry anymore, her son would be fine, and he was.  He wasn’t fine in that he suddenly became perfectly healthy, but he was fine in that he has led a happy, fulfilling life. Clearly, she had been touched by something spiritual on that day to turn her torrents of tears into smiles of joy over her new baby.

Several years later, while camping high in the mountains, my mother woke up from her sleep and sat up in her sleeping bag.  She was joyous!  She told me she had been to see God, whom she described as a bright and beautiful. She said it felt real, not like a dream at all.  She was confused as to the experience because it seemed as though she was there to help a friend pass over into heaven.  She did not understand because of course her friend was healthy.  It was not until we returned home from vacation that she learned that this friend had died from a brain aneurysm on that very night at that very time.

My mother lived a life of  great happiness and contentment, always seeing the good in people.  Near the end, right before she died, I stayed with her 24 hours a day.  When we knew death was near, the nurses let me lie in bed with her and she passed away in my arms.  I don’t know what I expected when she died.  No…that’s not true…I expected to see some of what she had experienced!  I expected to see her pass into heaven!  I expected there to be some reaction from her body, some knowledge that her lifetime of spirituality would somehow, through osmosis, pass through to me.  But there was nothing.  She just stopped breathing. And there was nothing.

It took me a while to accept her death, and I became angry that there was no sign from God that she was with him.  Realistically I knew this was silly, but I was hugely disappointed.

Christmas time came soon afterwards.  As the parent of 5 children, I had this habit when the children were younger of taking a picture of their sleeping faces on Christmas eve.  As they aged, they hated the existence of these pictures!  (They were usually sucking on a “binky” at the time and girlfriends and boyfriends who saw the pictures in old photo albums would always go “Awwwwwwwwwwww, how CUTE,” the most mortifying thing that could happen to a teenage macho boy!)  This Christmas eve, filled with nostalgia, emptiness and sadness,  I again went into each of their bedrooms and gazed at their sleeping faces.  I was suddenly filled with a great sense of purpose and contentment, much like the type of contentment my mother might have felt when she felt the Angel’s hand upon her shoulder.  These were MY Angels.  These were my children who had endured so much when younger, either with their disabilities or with indescribable child abuse. They have not only survived, but they have THRIVED.  They are happy and loving and successful and they have bright futures as adults.  This is miraculous to me!

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The Joy of a Successful Life

    My oldest son, Francis, recently got married.  Despite being legally blind, he had graduated with a doctorate from Cambridge University in England, and has been working for a computer conglomerate in California for the past five years.  While living alone, he walked to work, prepared all of his own meals, (purchasing groceries from a nearby store and pushing them home in an umbrella stroller, which he found much easier to use than the folding metal grocery carts,) did his own laundry, paid his own bills, and functioned completely independently using adaptions for his vision.  He had conquered Cambridge University alone, which demonstrated he could definitely succeed.  He had also succeeded in becoming a licensed captain for sailing and skiing Black Diamond trails in the Swiss Alps.  Definitely an intelligent and capable young man with only the minor inconvenience  of not being able to see well. 

     While successful in his independence, like everyone, he searched for that “special someone.”  Working twelve hour days, six days a week, he did not have much free time to socialize in the community, and he did not see himself going to a bar to “pick someone up”.  He did what he had done his whole life…utilized the computer to accomplish his goal. He had a method for his computer match-ups…first meet them for coffee, than lunch, then dinner and then decide if it was a relationship he wanted to pursue.  After a few false starts, he finally found his significant other.  They loved spending time together and had many things in common.  The one good thing they did NOT have in common was that she had a car and she could drive!  Although Francis was very adept at using public transportation, it was nice not to have to spend quite so much time traveling.

     And so they got married last month.  The got married outside under a gazebo.  They wrote their own vows which were, as is my son, clever, humorous, heartwarming, touching and sensitive.  They smiled and cried through the whole ceremony, which ended with them nailing shut a special wooden box with a bottle of wine which they had purchased on their first vineyard tour together.  In the box, there was a slot, and they each submitted a copy of their wedding vows.  On each anniversary, they would write each other a love letter and slip it into the box, which would be opened at their 25th wedding anniversary.

     The theme of the wedding was computers. To make a long story short, she had asked him to help her with the theme for the wedding.  Not being very knowledgable in this area, he jokingly said “Computers”, and she ran with it as a theme.  The wedding invitations were computers, the wedding cake was a stack of computers, the decorations were computers and so forth.  They had even gone so far as to have computers made to wear on their head, although her “computer” had little bows on it.  Their engagement photos included a picture of them wearing their computer gear, holding hands.

     The reception was wonderful, with Francis and his new wife smiling ear to ear, giggling or laughing the whole time.  Their love for each other filled the room with joy.  I was asked to give a speech, and this is a summary; “I don’t care how old our children are, they are always our children.  I always worried about Francis, and especially about his dangerous activities such as skiing down the Black Diamond slopes.  He knew I was petrified he would ski into a tree and get hurt, or worse.  When he went skiing in Switzerland, he sent me a picture of him standing proud at the top of the slope, dark goggles reflecting the sun, a big smile on his face.  ”See, mom, no trees on the Alps” he wrote.  I was so proud of my son who, at the age of 24, still knew his mother worried about him and wanted to reassure her that he was okay.  I was relieved he would not be facing any dangers on those slopes…and it wasn’t until years later that I learned there may be no trees on the Alps, but avalanches are common!  At any rate, this wedding day is the happiest of my life because it is the happiest day of my son’s life.  He has found the perfect mate, someone who shares the same interests, someone who loves his cooking, and someone who drives!  She has to be the most perfect person in the world for him…how many other engaged women do you know who would wear a computer on their head for their engagement photo? And so I congratulate the both of them on this momentous occasion.  As his mother, I know I don’t have to worry about him any further.”

     As parents there are many times we wonder how our children, especially our children with disabilities, will “end up”.  I can breath a sigh of relief.  Francis has “ended up” just fine…

Don’t forget…my new book “The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane” is available on Amazon.com, Barnes and Noble and I-Books!

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on September 23, 2012

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