Hotwire is My Hero!

  I don’t travel very often, but when I need to book a hotel, I use Hotwire.com.  They offer wonderful hotels at a low rate; hotels that have extra rooms that they need to fill up.  The catch is, you do not know the name of the hotel, just the “type” of hotels that are included in each category.  Hotwire has never disappointed me, as they have always provided quality hotels at a greatly discounted price. This past weekend, I was scheduled to do a presentation for a large parents conference held at Perkins School for the Blind, about a two hour drive for me. Because the conference was scheduled to begin at 8:30 am, and I would be reimbursed for my travel expenses, I contacted Hotwire to book a hotel room. The least expensive one listed was $69, which was a real bargain because hotels in and around the Boston area are very pricey. I booked it on line, and awaited the name of the hotel.  It was not a brand name I had ever heard of, so Google checked it out for me.  It was listed as an “elite, boutique hotel”, and the least expensive price listed on their website for a room was $180!  Now, I am definitely NOT elite, and have never visited a boutique before, but for $69 I was going to give it my all! Upon driving up to the hotel’s front door, I learned that valet parking was mandatory. I relinquished my “Best Mom” fake jeweled key chain to the parking attendant, (pardon me…to the VALET.) Politely and without comment, he struggled as I do to climb up into the driver’s seat of my large van, and drove away in my 2002, dented, dirty, 15 passenger with a raised roof and wheelchair lift van.  He parked it right between a Rolls and a Jaguar, and it looked like a large, dirty, cheap piece of coal between 2 diamonds. Even my car was going to get a new experience! The lobby was gorgeous, as are so many in expensive hotels.  Lots of fresh flowers, a water fountain cascaded down the wall, and a lovely tray of fresh baked chocolate chip cookies.  Checking in was a pleasurable experience with a tuxedo clad clerk, who offered me a cookie.  (I would have taken one anyway, so the fact that he offered was a bonus, although I would have preferred he offered me 10.) My 6th floor room, with the curtains open, had a breathtaking view of the Boston skyline at night.  The room itself was definitely “boutique”… furniture with trim lines, a wood floor with plush, beautifully designed, throw rugs  that added an elegant, clean look to the room. Because it was late in the day and I was tired, I put on my jammies, brushed my teeth, and climbed under the luxurious, fragrant, CLEAN sheets and comforter. I honestly felt as though I were laying on a cloud. In addition, there were four different types of pillows on the bed so that I could choose the one which would best facilitate a good night’s sleep.  Ahhhhhh…..sleep….on a cloud overlooking the Boston skyline… The modern bathroom had a very large walk-in shower with huge round shower heads pointed in all directions.  In the morning I took a shower, or, should I say, I EXPERIENCED a shower. It was all a new thing for me; hot water flowing over my body from all different angles.  Do people really LIVE like that?  The shampoo was ultra fragrant, with a conditioner and body wash that had complementary fragrances.  (Think orchids, strawberries and oranges…) I felt like a fruit orchard, and it was a very unique feeling! (I guess that is what makes the hotel “boutique”.) As I finished showering and came through the frosted glass door of the shower, I shocked myself when I saw another dripping wet, old, fat, ugly naked woman coming towards me in the room. I screamed.  I shuddered.  I looked closer.  It was ME.  Reflected in the mirrored wall just outside the bathroom.  Although breathing a sigh of relief, I was also filled with horror at the image in front of me.  I don’t know about you, but I NEVER look at myself naked in a full mirror.  Any illusions I may have had about my looks were proven false in that moment.  Oh, well…it’s a good thing I feel beautiful on the INSIDE… After getting over my shock, I dressed and made myself a nice cup of tea with the provided Keurig.  Now THAT is my idea of a boutique hotel…one that provides fresh tea to my liking.  Now, if only I had a few of those chocolate chip cookies from downstairs…         ************************ I would love to come and speak for your group or at your conference.  I would do it for free, but would need the price of travel. For functions in the North East, that would be only gas money. Link to my book: https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11 The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane Link to the Readers Digest review of my book:  http://www.rd.com/recommends/what-to-read-after-a-hurricane/

Advertisement

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!

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 Whole New Meaning to Swimming With the Fishes

I have been fortunate in that my mother loved to travel and she often took me and one of my kiddos “along for the ride.”  One of my favorite spots was Discovery Cove, part of Sea World in Orlando.  Discovery Cove offered a make believe coral reef with lots of beautiful fish swimming around and huge stingrays that would swim close and touch you. It was so amazing, and was as close to real snorkeling that I had ever been. With a life jacket, snorkel and mask on, Marie, (my 13 year old daughter who is profoundly deaf and has PTSD) and I spent the day swimming around, amazed at the many varieties of tropical fish. It was like being in another world.  In one spot, there was a glass wall and you could swim next to sharks.  Up until this point in my life, this was as close to real snorkeling, and SHARKS, that I would get! It was awesome!

Near the end of the day, Marie’s medication began to wear off as we had stayed later than I anticipated.  She began to get anxious, but she didn’t want to leave.   I told her one more swim around the coral reef and then we’d head back to the hotel.  As had been happening all day, a stingray came up and touched Marie on her leg.  In fact, she had been petting them for most of the day, calling them her “friends”.  For some reason, this touch was different than the rest.  She became frightened and had a full blown panic attack.  She started SCREAMING her high pitched scream and she was signing (in American sign language,) “The fish is going to eat me!” (Why the fish would think she were any tastier later in the day than earlier, I don’t understand.) To get away from the stingray, she climbed onto my back.  I tried to calm her down, but it was difficult to do sign language while trying to swim with a child on your back, and she was screaming so loud her eyes were shut and she couldn’t see what I was saying anyway!  By this time, we were halfway around the coral reef and as far from the shore as you could possibly get.  Marie decided she was not safe enough on my back because her toes were still in the water,  so she climbed up on my shoulders to get completely out of the water!  Unfortunately, that meant I’d have to sink UNDER the water for her to stay OUT of it.  I started screaming along with her.  (Albeit alternating choking with water and screaming.) She was truly frightened the fish was going to eat her and I was truly frightened I was going to drowned.

They have several life guards there and our dilemma was not hard to miss, with Marie standing upright and me bobbing in and out of the water choking. Because we were so far out, it took the lifeguards what seemed like an eternity to reach us.  When they got to us, Marie refused to let the lifeguards touch her, screaming and kicking at them.  (Good old Post Traumatic Stress Disorder shows up when you least expect it!)  What three of the lifeguards ended up doing was supporting me in the water while she continued to stand on my shoulders and scream. Of course there was a huge crowd of onlookers on the beach, some taking photos.  (We really were quite a sight!) Once on the beach both Marie and I collapsed into the sand.  The life guards asked if we needed to go to the hospital, but I was still breathing and Marie had stopped screaming and was crying quietly, so that meant we had both survived unscathed.  Well, maybe not totally unscathed, I’ve lost my wanderlust  for snorkeling!

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…

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!!!!

Good Luck or Bad Luck Can Be in the Perception

My father was an artist/architect/carver.  He designed beautiful buildings that to this day are still city centerpieces, painted flattering portraits that still hang proudly in people’s homes, and carved a large variety of creative items.  His favorite, and my mom’s least favorite, was a statue of a Tiki god.  A squat, dark man with wild pointy hair, red eyes and a huge, pure white, toothy grin that was almost as big as the body itself.  My mother said it looked evil and it gave her the creeps.  My dad proudly sat it on the fireplace mantel “for good luck”, he said.

Shortly after he placed the statue there, he fell down the basement stairs and broke his leg badly in three places.  He recuperated slowly, but managed to get back to work.  Because he had just returned to work, he ignored stomach pains because he was trying to get caught up on a project.  He finally had to be rushed to the hospital and almost died because his appendix had burst and he had become septic. Whether he was going to live was up in the air for days.

He finally recuperated and returned home from the hospital, although he was still not entirely healed.  He had to get up every few hours to take pain pills.  Late one night when he got up to take medication, he found the kitchen of the house engulfed in flames!  He woke everyone up and managed to scoop my brother out of his bedroom next to the kitchen before the flames reached him.

The fire trucks arrived quickly and more than 1/2 of the house was damaged.  The house was burnt from the back bathroom, the laundry room, the kitchen, my brother’s bedroom, and all the way down the hallway up to the mantle of the fireplace in the living room where the fire damage had stopped.  After the firemen put the fire out and surveyed the severe smoke damage, they were struck by one oddity…the smile of the Tiki god was glowing bright white.  Everything around it was burnt or blackened by smoke, but the statue appeared to be untouched!

Our local newspaper did an article on this phenomenon and we were local celebrities for our 15 minutes of fame.   My mother insisted the Tiki statue was bad luck.  My father fell down the stairs and broke his leg.  His appendix had burst and he’d almost died.  And 1/2 the house burned down!  My father had another take on the situation.  The Tiki god was GOOD luck.  When he’d fallen down the stairs, he could have broken his neck instead of his leg.  When his appendix had burst, he could have gotten to the hospital too late and died.  And if his appendix had not burst, he would not have gotten up in the middle of the night to get medication and the whole house, including his family, could have burned!

The statue remained a fixture in my parent’s house as long as my father lived.  When he passed away ten years ago, my mom got rid of the statue, or so I thought…

Some of you may know that I have been dealing with the recent death of my mother. Cleaning out her house these past few weeks have been the saddest thing I’ve ever done in my entire life.  How does one begin to decide what to keep, what to give away and what to throw away?  Cleaning the kitchen I found the grinder she used to make bologna salad with.  Cleaning the bedrooms I  tenderly sorted through pictures, mementos, costume jewelry and I not so tenderly threw away her clothes that had become threadbare and worn.

I had managed to finish cleaning most of the house except for the basement.  I put that off until last.  In a family like ours without any wealth in “things”, I could only expect to find in the basement “memories” not worth keeping, but too sad to throw away.  All of the old Christmas decorations, the threadbare sheets, blankets, chenille bedspreads and curtains that my mother thought might “come in handy one day”, old televisions with rabbit ear antennas,  8 track tape recorders, posters from the 60s that had faded and crumbled with the moisture,  and a whole lot of other worthless “junk” that would cause me further sadness.  I was dreading cleaning it out!  As a working mother with kiddos who I have to drive back and forth to doctor appointments, soccer practice, friend’s houses and such, I did not really have the extra time I needed to devote to this depressing task.  Plus, I hated cleaning my OWN house and I resented the fact that this task lay ahead of me.

At work my husband called me frantic!  The water heater had burst in my mother’s basement and there was 2 inches of water everyplace!!!  I had no time to be bothered with yet another unpleasant task, I thought as I left work early to take care of the situation.  As I opened my mother’s basement door, I could hear the water gushing, and see items floating freely in the water.  “UGH!!!!”  I thought, as I started to cry, overwhelmed by the task ahead of me.  Now I not only had to clean, but I had to mop up the mess! When I got to the bottom of the stairs, I surveyed the damage…everything was dank, dripping wet and depressing.  Then, a familiar face smiled out at me through the dampness…the Tiki statue!  It was up on a shelf on a wall way across the room, but even through the darkness I could still see its smile!  I stopped crying in amazement.  It made me think.  I finally realized that this was NOT bad luck, as my mother would have said, but GOOD luck, as my father would have said.  With my mom’s basement flooded, her homeowner’s insurance company would pay to have it cleaned up!  I called them and they sent over a cleaning crew right away. With everything ruined, it would have to be thrown away, not by ME, but by the company which would haul it all away.  Suddenly the dismal vision of me standing in a foot of water and bagging after bag after bag of old, wet memories disappeared, replaced with a sense of giddiness! I don’t know why, but just the fact that this huge daunting task of cleaning her basement had been taken care of by this flood lightened my mood. Isn’t life strange?

Although some of our old stuff MAY have been salvageable, I knew it would just sit in my basement and become more junk for me, so I asked the clean up crew to clean it entirely because everything was “moldy from the water. They went in and scooped everything away and cleaned the basement spotlessly!  The thing I saved from the basement was the Tiki god.  Not that I “believe” in him, but I believe that sometimes luck is all in how incidents are perceived, and life is a whole lot less stressful if you can look at the lucky side of things!  I know my spirits were lifted that day…

The Joys of Parenting (?)

Parenthood can be a lot of work at times, especially with children with disabilities, but I always prefer to see the joyful side of parenthood for the following reasons:

1. The sight of a sleeping child, no matter what age, melts my heart.  We always take pictures of our children sleeping on Christmas Eve, so I have a collection of how their sweet sleeping faces look as they age.  It never ceases to affect me and I smile at each and every one.
2. When a child is in a school performance, from pre-school graduation, school plays, award ceremonies, right up to college graduation my pride soars.  Tears always come to my eyes as my well dressed for the occasion child “does his/her thing.”  Each child’s “thing” may be different…Steven, especially in the early years with his sensory integration deficit, would actually hide under the chair, (or the pew in church as was the case when he was supposed to make his first communion.)  Francis would walk slowly looking down due to his visual impairment, and he would be hesitant about who to go to until he got close enough to see them.  Dinora would “strut her stuff”, with us all excited at her accomplishment.  Angel would put on his best “game show host” face and wave to the audience as if the event was entire for him.  Marie would…well, I’ll save that for a later blog because that is a real interesting story!
3. Each time a child learns a new skill, I am overcome with joy at their accomplishment.  Not just the learning to walk or talk part, but the entire route to independence they take.  My 2 oldest live on their own, have jobs and pay their own bills.  Just the fact that they can pay their own bills causes me to leap in the air with happiness.
4. Sitting around the table eating dinner together usually, (depending on how the kids are getting along,) fills me with the peace.  I like sitting at the head of the table with my husband at the other end, and the kids in the middle.   Holidays and special occasions are always extra nice when all 5 children are there.
5. I feel a happiness only a mother could feel every time a child presents me with a gift they have made for me. Steven made me a wonderful 2 foot tall vase shaped like and alligator, (his favorite animal.)  What mother wouldn’t be thrilled to receive an alligator vase?  The color even matches the colors in my kitchen!  Angel’s, who is 15 years old, has a child-like “part” that makes me jewelry.  He presents it to me with great flourish,  It is always gaudy and  made of huge plastic “crystal” beads.  When I wear it, I feel like I am wearing a chandelier, but I wear it with pride, (until I can get in my car alone and take it off on my drive to work.)
6. Taking the children out for an activity like bowling, horseback riding, or go cart riding allows me to have an excuse and have fun like a kid myself.
7. The times the children prepare breakfast for me is especially joyful, (even though the eggs are tough, the toast is burnt, and the tea has no sugar.  Plus, the kitchen is a huge mess!) I always look on the bright side, and even if my eggs aren’t sunny side up, I am sunny inside!
8. The biggest joy I get out of parenthood is the fact that I do not have time to clean the house…taking care of all of the children’s special needs, all of the therapy, counseling, medical, extra-curricular activities does not leave me any time to clean!  We’ve long ago learned to settle for a “picked up house”, not a spotlessly clean house, (or even a “pretty clean” house.)  I feel no guilt at all.  I would much rather be spending time helping my children than washing the kitchen floor.  I will never lay  when I lay on my deathbed I wished I’d kept my house cleaner!  There are so many more important things to do with the kids, so, sorry, don’t expect my house to be real clean!  Ah, the joy of no housework!!!!

Parenting is a lot of fun and can be filled with joy.  I try to always focus on the positives and downplay the negatives.  It is the only way I remain sane!!!!

Different Children/Different Adoption Experience

I was in family court today  and while I waited my turn for my case to be called I sat there on a cold metal bench watching people around me.  In the far corner was a group of family members there to celebrate the adoption of the most adorable blonde haired, blue eyed girl, dressed in a red velvet dress with a white lace top and red bows in her hair.  There were at least 10 family members and a professional photographer.  They were called into the courtroom first, as usually happens with the adoptions.  They came out ten minutes later, the new mother crying, the new father proudly carrying his official new daughter.  The family members were joyously hugging and congratulating them, which was completely incongruous to the rest of the mopey general public, myself included, waiting to be heard in court.  (Not too many people smile or dress elegantly when waiting for court, and the judges and social workers all have their own private room so they don’t have to mingle with the rest of us!)  Anyway, it reminded me of the 4 very different adoption courtroom experiences I’ve had with my children.

The one that comes closest to the scene I’d witnessed was when we adopted Dinora from Guatemala.  Adopted at the age of 12 months, I did dress her is a frilly dress with a bow in her hair.  Our 3 year old son came along dressed in a little vest and tie, and my husband and I proudly carried our children into court for our little one to become an official member of the family.  We did not think to bring other family members around, (just as I did not want any other family members around when I giving birth, I guess!)  We did take a few pictures, and then we all went out to Chuck E Cheese’s for pizza to celebrate.   It was a lovely adoption!  What a great experience!

Our third child, Steven, we had had since birth.  I took him home from the hospital when he was one month old. They had trouble placing him because he had been born heroin and cocaine addicted to an alcoholic birth mother and anyone with any experience with these children know what serious difficulties they can have.  Due to his exposure to drugs and alcohol,  his brain appeared to be wired wrong, (my “formal” diagnosis.) He had excessive sensory integration deficit whereby he would scream if you touched him gently, or if there was a tag on his clothes, or it the tv was too loud, or if the room was too bright, and so forth.  Plus, by the age of 2 he was super active and never slept.  Joy!  Joy!  Nothing, however, could dim our love for him and we wanted to adopted him. (What held it up for several years was a reported birth father, in prison for life for murder, who would not release his custody.  The funny thing was, Steven’s birth mom was Caucasian, light colored hair, blue eyes.  His reported birth father was a red headed, blue eyed Irishman.  Steven was obviously bi-racial with his dark skin and gorgeous curly black hair.  Even though one might entertain the idea that it WAS theoretically  possible that these two people could produce a child with Steven’s characteristics, the fact that the reported birth father was in prison when Steven was conceived should have given a clue that he was grasping at straws to obtain custody. Finally, after a forced court ordered DNA test, it was determined he was not the father and Steven was free for adoption.  Our loving son could become a permanent family member!)   His adoption courtroom experience was very memorable, but all for the wrong reasons.  He was almost 4 and wild, wild, wild.  He was taking Ritalin, which just took the “edge” off.  He still had his sensory issues, and wearing clothes was a real challenge for him.  During the adoption proceedings, I sat Steven on my lap, but he wriggled and cried and tried to get free.  “Let him DOWN”, the judge said sweetly, and who can argue with a judge?  So I let him down.  He proceeded to run around in front of us and strip off his clothes piece by piece.  The judge started talking faster and faster, trying to hurry the adoption process along.  Steven finally was naked and he started to climb up the wood in front of the judge, just as the judge finalized the adoption.  “Good luck,” the judge said to us, “I think you are going to need it!”

The adoption of our son Angel was semi-sweet.  He loved to dress up, so he was wearing a suit and tie.  The court had combined his adoption with the adoption of his five brothers and sisters who were being adopted by their aunt.  The children were removed from their birth mother when Angel was born as he was also born to an alcoholic birth mother who was addicted to heroin and cocaine.  The aunt agreed to adopt his siblings because they already had a family relationship, but Angel was a stranger to them all.  His aunt, only twenty-eight years old herself, had five children of her own.  They lived in the poorest part of town in a small apartment that could not rationally hold eleven people. She did not have a car,so we picked them all up to take them to the courthouse for the adoption.  They were dressed in clean but tattered clothes.  It was obvious that this mother was going to struggle with these children as several of the older, teenage ones were already showing signs of delinquency.  The adoption process went smoothly in court, and we dropped them off at their home with a hope that things would work out.  Then we happily went home to celebrate with Angel.  Another family outing to Chuck E Cheese’s for pizza! (Angel has kept in touch with his siblings, whose adoption has since been rescinded by the adoptive mother.  Two of his brothers are in prison, one in the training school for boys, one sister had died and the other sister has lived with several different foster families.)

Marie’s adoption was our final adoption.  She had come to us as a foster child at the age of seven, having been picked up in the city streets at 4:00 am carrying her infant brother trying to find food for him.  At her tender age, she had been the caretaker of this infant because her birth mother was incompetent and spent her nights out doing drugs of hooking up with guys.  Marie was devastated when she and her brother were separated, and she worried and cried for months that he was going to die because she wasn’t there to take care of him.  At the adoption proceedings, as in Angel’s case, her brother was to be adopted at the same time she was.  By this time he was about four years old.  When she saw him in the courtroom lobby she joyfully ran up to him to pick him up.  He started to cry!  He didn’t know who she was!  His new adoptive mother held him and calmed down, but every time Marie came near him he’d start to cry again.  Marie was devastated and tearful the whole time. The joy of her adoption was overshadowed by her sadness that the infant she had raised did not know who she was.  (She managed to recover somewhat, however.  After the proceedings, they let us go up and take a picture of the judge. In every picture, Marie snuck in “bunny ears” fingers over the judge’s head.  So much for a memorable adoption picture!)

I would have to say that no two adoption courtroom proceedings are exactly alike. The only thing that is alike in all of them is a deep love of the adoptive parents for their new child/children.  For me, in each case, it matched the love I experienced during the birth of my first child.  That is a joyful thing!