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.

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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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.

My teenager talks on the phone…

I am so excited!!!!  As I sit here at the computer my teenage daughter is chatting with her friends.  They’ve talked about Justin Bieber, what they’re going to do after school, what color they are going to do their nails next, and the regular banter of teenagers.  It is music to this mother’s ears because it is the first time she has ever been able to talk to her friends.  Of course, she has her cell phone and she is able to text her friends, but this this the first time I can see the giggles and silly faces teenagers make when they are happy. My daughter is deaf, and she has just learned how to use the Sorenson Video phone. She can now see her friends and they can talk with American Sign Language!  At last, I have a “normal” teenage daughter!!!!

Twenty Ways to Get Your Child to Leave a Waterpark…

I took my daughter, Marie, to a water park today.  Water parks are wonderful inventions!!!  All kinds of neat stuff to do in the water.  There is a big wave pool, which is kind of like swimming in the ocean waves except for the sand and the salt.  This is my favorite part of the water park, where she and I float in tubes holding onto the handles of each other’s tube and bobbing up and down in the water.  (I do have to say that lately I have gained so much weight I could probably bob without the tube…)  We went on water slides, in the lazy river, and I even spent some time in the hot tub.  I lay in the hot tub straight out, with the water jet aimed right at the back of my neck.  I lay there floating, eyes closed, enjoying the hot, pulsating water, feeling some of the tension release in that part of my body.  The tension release was short lived, however, as I was soon frightened out of my mind by a lifeguard who jumped into the hot tub to “save” me.  Because I was lying there floating with my eyes clothes, he thought I had passed out or something.   I was very embarrassed because by now a crowd had formed around me.  I do have to say that it might have been worth it to pretend I did need saving as the lifeguard was a very handsome young man.  But I digress…

The title of this is Twenty Ways to Leave a Waterpark which I write after my sympathy in seeing numerous young children dragged crying and screaming out of the park.  One couple near me just announced it was time to go to their young child.  They child said no.  They yelled it was time to go.  He said no.  They said they were going to leave him at the water park and go home without him.  He turned to go back in the pool. They dragged him out kicking and screaming.  After seeing this happen time and time again with all ages of children, I thought I would share my “leaving the water park”  parent wisdom…

First, close your eyes and picture doing something you really like to do  (OOHH!!!!  Wait, don’t close your eyes or you won’t be able to read this…)  Okay, just think about something you really like to do…watch a baseball game, go to a concert, eat chocolate pudding and so forth.  Then imagine that mid game, mid concert, mid bite of chocolate pudding someone in authority comes and takes it away from you and tells you it is time to go. No advance warning.  No waiting until the end of the 9th inning.  Just “it’s time to go!”  Would you go quietly or would you rebel?  Children have the same feelings.  If they are quickly taken away from something they enjoy doing, they most likely will rebel, and rebel loudly!  So, here are my ways to successfully leave a water park with a happy child.

#1  You could plan to leave the water park at closing time, which would be a natural transition for the child.  The slides and pools are closed.  It is time to go home.  This was good at the water park we were at because it closed at 6:00 pm.  It would be trickier for those parks that close at a later time.

#2  Another way to get a child to leave the water park would be: about an hour before it is time to leave, tell the child that you will be leaving in an hour.  Tell him/her again at 1/2 hour, then when only 15 minutes are left, then 10, then 5, then calmly usher the child off to the exit, as expected.  It takes time to do this, but the payoff with a hassle free exit will be worth it.

#3  Another method: if your child is the type who likes to ride on the slides, set a number of slides he/she can do before it is time to leave.  This works better with older children and does not need to be done an hour before departure, (unless the lines are VERY long….)  With my daughter today, I told her she had 5 more slides.  Then, after a few more slides I told her she had 2 more slides.  After those 2 slides, she came and got dressed to leave without complaint.

#4 For those children who need a more visual cue, there is a timer sold at Maxi-Aids called the Time Timer.  You set it at an hour, and the background is red.  The red slowly gets smaller and smaller until the time is up.  My daughter has no problem adhering to this as a reminder of when it is time to leave.  She can visually see how much time is left, and plans accordingly.  No arguments.  When the red is gone, her time is up.

#5  I was being overzealous…I only have the above 4 ways to graciously leave a waterpark.  Plus the fourth, most difficult way.  If any of the above methods do not work, one parent (or 2, depending on how large your child is,) scoops the child up in your arms and carries him/her out to the car.  The ensuing wailing and screaming will of course attract attention.Believe me when I say that other parents WILL understand.  Besides, you are at a water park far from where you live and you’ll never see them again, so what do you care what they think?  You WILL feel badly for your child, but, as a parent, you have to be brave and carry through with this.    You have to think of your child and his/her future, and what they will learn from this experience.  I guarantee, you will only have to do it once…

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!!!!

She Took Off with the Man in the Red Truck

A neighbor ran to my door the other day and screamed “Marie just got in a red pick-up truck with a man and he sped away.”  Bad information for any parent to hear.  I immediately called 911, and by the time the police were at my door minutes later, Marie, who is profoundly deaf and very precocious, came strolling down the street to our house.  Of course I was overwhelmingly relieved to see her, but also slight embarrassed by the 5 police cars at our doorstep.

“Where WERE you?” I asked.

“I went with man to find dog” she answered in American Sign Language.   We all gasped at the “reason” she got into the red truck, a reason notoriously used by men who kidnap children.  She said she jumped out of the truck and came home, giving a description of the truck and the man. Then she nonchalantly mentioned that she knew him and where he lived.  Walking, she led the police cars two streets over and pointed to a house. Completely disinterested in their investigation, and stubbornly unwilling to discuss it any further because her favorite television show was on, she walked home.

Knowing Marie and her friendliness and impulsivity, I thought she had willingly jumped in his truck, thinking of him as a friend with no harm intended.  After all, he simply drove around the block and parked at his house.

He turned out to have a record for drugs, but no history of child abuse or violence.  Even if he “let her go”, the police argued,  he would still be guilty of “child enticement,”  so they dutifully put him in handcuffs and brought him down to the police station.  Something about the situation just did not sit right with me, so I sat Marie down and delved further into her story.

According to her, the neighbor’s dog got loose from its leash and she was chasing it trying to catch it but it ran up the street.  When the man in the red truck drove by, Marie, recognizing him as a neighbor, frantically flagged down his truck and asked him to stop. Without him making any comments or motions, she jumped into the front seat and pointed at the loose dog.  Understanding what she wanted, he sped down the street in pursuit of the animal, which eventually turned around and ran home.  He had driven around the block to his home, at which point she jumped out of his truck to come home.  She was completely confused as to why the police were there.  Using this as an opportunity to reinforce to her the dangers of getting into someone’s car, the lesson did not register with her.  She KNEW him, she insisted, and he was just helping her.

Knowing that this man, who only responded to his young neighbor flagging him down and jumping into his car, was being held in handcuffs at the police station, I immediately called the station to give the explanation.  It was the same explanation the man was giving the police, but which they somehow did not believe.  With my corroboration, they let him go. Gracefully, there were no hard feelings from him as he completely understood why they thought he committed a crime.  He did learn a lesson, though, as he reportedly keeps his doors locked now when he passes our house.