“It Smells Like Flowers and Sunshine”

Working this summer running an educational/recreational program for kiddos with disabilities, I have been giving my good ole, 12 passenger van with a wheelchair lift a run for its money.  Surprisingly, despite numerous past mechanical difficulties, it has become a war horse for transporting us throughout the state to many wonderful adventures!  Because it is an industrial type van, it supplies the children with a lot of extra bounces, creaking, twists and turns.  (It is good thing they are all snapped down into booster seats and seat belts or by now I would have many little dents in the ceiling from their bouncing heads.)  They laugh and screech and go “weeeeeeeeee” as though they are on a ride at an amusement park. (I dare say, some of the children have never experienced such excitement…)

Over the weeks, I have become somewhat lax in van cleanliness…food wrappers, discarded art projects, broken recreational items (such as water guns and deflated balls,) and, EWWWWWW, old clothing left by the children, litter the floor.  I KNOW it is not proper, but, somehow, I am so busy with the program arrangements, supervising the children and driving them back and forth from their homes that at the end of my 12 hour day, that I am too pooped to do anything but sit in my lounge chair at home and watch Judge Judy.  I did the only thing I could do under the circumstances…purchased a couple of cute, little, purple, sweet smelling air fresheners for the van.

The day after this ingenious addition, the children filed on one by one for a trip to the aquarium.  Many of them commented on the smell, including one little girl who is blind who remarked “Do you have flowers in the van?  It smells beautiful, like flowers and sunshine!”  Thus proving to me that those Febreeze commercials where people are put into smelly, messy enclosures really DO smell only the Febreeze!

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Mother’s Day and Delayed Rewards

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…

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/

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

 

The above description fit me perfectly.

Yes, me… perfectly.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No more screaming from me…

 

 

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

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

 

 

 

 

The Dance of the Snake Goddesses

I apologize for repeating this post from 2011, but it is on of my favorites, and a memory that is brought to mind on those few occasions that i have to go to court for my children and I see this particular lawyer there…

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!

An Active Life with Limited Vision

Francis, who is severely visually impaired enough to be considered legally blind, was skilled enough that he was able to attend a mainstream kindergarten.  He needed some modifications, including large print materials.  He adjusted well to the class, but one week came home and told me that they had a guest speaker come to their classroom.  An exterminator came to the classroom to tell them about termites and such.  He was clearly shaken by the presentation, and for the next several nights he had nightmares, couldn’t sleep, and kept the light on in his room.

He was petrified of termites!  Trying to calm him down, I said “Why are you afraid of teeny tiny termites?”  “TINY???” he cried, ‘They’re HUGE!”  Only people who have driven through Providence, Rhode Island and have seen the 30 foot long, 10 foot tall “Big Blue Bug” as an advertisement for an exterminator which sits proudly right next to Route 95 would understand why he thought termites were huge.  After all, he was too visually impaired to see a real termite, and thought that all termites were that big! No wonder he was so frightened!  We’ve had a good laugh over that story for years!

Another interesting story was how he chose his friends.  With limited vision, he could only make out vague details of the other children.   Yet, he had one good friend named Eddie.  He and Eddie always hung out together.  One day I brought him to school late, and as I looked over the sea of Caucasian, blonde haired little five year olds, I heard Francis say “There’s Eddie” as he happily jumped through the crowd to sit next to the only African American boy in the class.  Real easy to spot!

As Francis got older, he wanted to participate in sports.  He took up wrestling through the Police Athletic League where his vision would not impair his performance.  I, however, had never been to a wrestling match before.  At his first match, he was wrestling with another boy his size and he reached over while the other boy supposedly made an “illegal move”.  Francis’ arm cracked the boy in the nose, and soon there was blood everywhere.  I’m screaming.  The kid with an obviously broken nose is screaming.  And Francis was screaming because he had won the match!  That was his one and only wrestling match. Okay, so blame me for being an overprotective mom, but the sight of blood tends to sour me on a sport.

After that, Francis took up swimming, a sport he excelled at, and one in which he could not get hurt or hurt anyone else.  He remained in this sport for many years, and won several honors for his fast swimming.  It gave him a chance to be a member of team and compete with other people where vision was not an issue.

Francis also became an excellent skier, skiing by following closely in the tracks of a lead skier. He went to winter camps in Colorado run by the Christian Braille Foundation from the age of 14 years old, flying alone across the country to join other skiers with vision impairments.  By the time he was a young adult, he was easily skiing black diamond slopes in Maine and New Hampshire. much to my chagrin.  I was petrified he was going to ski into a tree!  (This was around the time one of the Kennedy’s died by running into a tree.) In his early twenties, while Francis was attending college in Cambridge, England, he made several forays skiing in the Alps.  He sent me a gorgeous picture of him at the top of the mountain, the sunshine on his back, his dark glasses gleaming in the sun with a big smile on his face.  He signed the picture “Look, Ma!  No trees!”  because skiing in the Alps is done above the tree line.  I felt much relieved.  What a great place to ski!  Until I learned from someone that there are not TREES on the Alps, but there are plenty of AVALANCHES!

While in Cambridge, Francis joined a punting team. His team was very successful because he was the lead “punter”.  (I don’t know what it is called…) He would stand at the front of the long, flat boat with a long pole.  Because of the fact he was 6 foot 4 inches, his pole would go deeply into the water and propel the boat forward.  He was also very agile and could do this very fast. His team members would direct him on which way to steer, and they became a champion team!

Despite all of my fears and worries as a parent, Francis has successfully made it to adulthood and continues to try new sports, surfing in Hawaii, wind surfing in California,  and, , jogging in marathons.  He even obtained a license to captain his own sailboat crew.  It just demonstrates that being legally blind does not have to hamper your activities, they just are done in different ways!

A Week At Camp, the Blind Leading the Blind

I have just unpacked upteen boxes and suitcases from a week of running a summer camp for children who are blind.  Lest you think this past week was a chore, it was not. It was a week of pure joy.  A week of watching months of work come to fruition. A week of watching young souls meet new friends, try new things, and, in some cases, mature beyond belief. Children whose parents thought they would be homesick and crying to come home at night, instead spent the night playing games with other children.  Sure, the children are blind and severely visually impaired, but they are still children.  The lure of learning how to play blackjack on Braille cards, or chess on an adapted chessboard, or Connect Four, Braille Uno, or Monopoly in large print and Braille, won out over going home to their lonesome bedrooms at home.  Who can argue with fun?

This was my 23rd year doing the camp. I started it when my son, Francis, was five years old.  In our state, as in most others, children who are blind or visually impaired go to their neighborhood public schools with accommodations made so they can be educated with their fully sighted peers.  It is a wonderful concept, except for the fact that the child may often feel alone.  I started this camp so the children who are blind can get together with other children with the same disability and learn that they are not alone.  There are many other children just like them!

We have been fortunate to rent a wheelchair accessible retreat center. (Some children who are blind are also mobility impaired.)  Although I call it “camp”, it has bedrooms with 4 beds, (linens and all,) each with its own bathroom (with hot water!)  There is air conditioning, carpeted floors, and a great room where all meals are cooked by a full kitchen staff.  There is also plenty of room for camp activities.  I know it does not sound like your typical “camp”, but it is as close to nature as this little old social worker cares to get.

The children range in age from six to eighteen, although theoretically the campers top age is 13.  Any camper who has shown active participation in the camp, we hire as a junior counselor when they reach the age of 14. I learned this “technique” to deal with the teenagers years ago when we found ourselves with a large group of teen campers who rebelled against the camp activities and wanted to just hang out.  They would sit back and not want to participate in the dance, the games, the swimming and so forth, effectively using the time just to socialize.  I am not saying that socializing is a bad thing; in fact it is a much needed activity for these teens, but just not the purpose of our camp. So, we hire them to work with the younger children.  Our state Department of Vocational Rehabilitation actually pays us to use this experience as a job training opportunity.  For those counselors who are totally blind, we provide a sighted guide for them, but they are expected to do the actual work.  Is there anything more valuable than seeing a fifteen year old girl, totally blind from birth, working with a six year old girl who is also totally blind? The campers learn that despite their disability, they have valuable skills, and they learn these skills from the junior counselors.  We have had many junior counselors go on to be head counselors, and also onto college into teaching and human service positions based on their initial experience at camp.  (We also have one young man who has become a certified EMT after working at our camp as our Medic for 8 years.) Because these young people are working at camp, they are learning valuable work skills and building a resume, and I have been asked to write many recommendations for these hard working, eager to learn, teenagers.

The activities at the camp itself are modified for children with vision impairments.  Besides the games mentioned previously, we have many group activities.  My favorites are our “Olympic” events.  The groups generally include one head counselor, one junior counselor and four campers, make up the “Olympic teams”.  We have many activities over the week that enhance the group dynamic, but also teach the children that winning isn’t everything.  While the teams make up the audience, one team performs the event while the others cheer them on.  It isn’t winning or losing that is the goal; it is the camaraderie, good sportsmanship, and support of others that counts.  Events this year included the ball in the basket toss.  A beeper is put in a laundry basket, and teams are asked to throw the balls in.  The team that gets the most balls in wins.  Easy enough one would think.  But to make it a little bit harder, and because some of the children have some limited vision, we blindfold everyone. Not quite so easy.  We also had a shooting event.  Water guns.  Turkey roaster pan hanging from a tree. Me banging on the pan so they can tell where the pan is located.  Lots of fun, but the most fun was seeing where on my body they would shoot me when they missed the turkey pan! Unfortunately, they did not get any extra points for shooting the camp director!  Another very humorous event was a twist on the old standby game…the dressing game.  In a laundry basket there are a pair of pants, a man’s long sleeve dress shirt, a tie and a hot.  The “athlete” is supposed to put the clothes on and race down to the person at the other end of the line, who is wildly calling their name so they can find them.  Getting to the person is the easy part, putting the clothes on, blindfolded, is the hard part, especially when the person before you has left one of the sleeves in the shirt inside out.  Or trying to put the tie on after the hat was on their head.  Or holding up the ill fitting pants while they ran. In this game, none of the audience could cheer the athlete on because they were laughing so hard.  We also had a pizza box challenge.  For this Olympic event, I put up a yellow plastic rope tied to a chair where the event started.  Using a talking caution cone which would sound an alarm when you came near it, the athletes could find their way along the rope and turn at the caution cone, heading back to the start.  Carrying a pizza box.  Then 2 pizza boxes, then 3, then 4, then 5.  The team that completed it in the shortest amount of time won the event.  There were several other events to the Olympics with the purpose of having fun and fostering a team spirit.  Of course, when the awards ceremony came, each of the teams had won at least one event, so everyone won a medal for their efforts, (a Brailled, bright, changing color medal with the name of the Olympics in large print.)

Another activity we do at camp, of course, is arts and crafts.  Everyone painted frames.  EVERYONE painted frames.  You do not have to be sighted to paint.  After they were painted, we had a wide variety of doo dads with which they could decorate their frames.  Tactile, three-dimensional stickers which were easy for everyone to use.  My favorite was the young camper who painted her frame like a flower and then stuck bees all around it.  Although the children may be blind, they still like to show off the group picture that will be placed in their frames.  A picture of all of their friends.  Lots of friends.  All who have vision problems similar to theirs.

We have also always done a group art project, one that hangs in our office at work and two that we give away to important state administrators who support us in this camp endeavor.  This year, we did rainbows.  The colors of the rainbow were outlined in puffy paint so that the campers could tell where one color ended and another began.  Then, everyone put their fingerprints to fill in the colors.  Hundreds of big and little fingerprints.  After the fingerprints had dried, we then had them glue on tactile items of the same color.  For example, for the red color I had real little birds, (well, not REAL little birds, but little birds about 1/3 inch high,) apples, hearts, gemstones, (fake, of course) and so forth.  For the orange color we had plastic oranges, flowers cut from a branch of artificial flowers, glitter orange stars, and so forth. This activity not only creates a beautiful 3 dimensional rainbow, but it also helps the campers with color identification.  Many of them did not know that a heart was red or that apples could be red, green or yellow.  (I had a variety of colors of apples just to demonstrate the point.) Someone glued clouds from pillow material, and someone put down a tissue sun.  It came out incredibly awesome!

I feel very strongly that children, ALL children, should volunteer and give back to their community.  When you have a disability, often you get used to others doing things for YOU.  I need these children, as I’ve taught my own children, to know that anyone is capable of giving back, of volunteering, of doing something good for others.  As our special project this year, we used Ziploc bags.  On one side, the children decorated them with tactile stickers, ribbons, lettering and glitter. The fronts of all of their bags say “Thank You”, in print and in Braille.  On the back of their bags, they could choose the stickers of their choice…monster trucks, flowers, spiders, ice cream items, a soldier, and so forth.  Then we took the children to the local dollar store and gave them each $7 so they could buy 6 items themselves to fill the bag with toiletry items for soldiers in Iraq. From this lesson, we learned about the brave men and women who are fighting for their country.  How it is hot and sandy there and there are no Walmarts or drug stores where they can buy the basic necessities such as soap and toothpaste.  The children each made their own thoughtful list of items they wanted to buy.  They learned the $7 bought only 6 items because there is a tax we all have to pay.  One by one, the children went into the store, shopped, and spent their money.  5 toiletry items and 1 “fun” item.  The fun items included such things lollypops, playing cards, gum, yo yos, hard candy, perfume and hair gel, (for one boy who insisted the soldier who got his bag would want to spike his hair into a mow-hawk.)  The children then came back to camp and joyously filled their bags. It was a wonderful learning experience for them, they had great fun doing it, and they learned that anyone can do something for someone else.  Once completed, we had 50 bags stuffed to the brim to donate to Give2TheTroops, Inc., which sends such bags to Iraq, Not too shabby of a day!

Many other wonderful experiences happened at camp this year, and I will write more at another time.  Right now, I am pooped from all of the unpacking, and my bed is calling. I did not see much of my bed during camp for some reason…

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…