As The Sun Set in the Warm September Sky

It was 95 degrees today! On the 6th of September! My daughter, Marie, and I spent most of the day at the movies where it was cool and comfy, munching on buttered popcorn and drinking Diet Coke. Coming home at 5:30 to stifling heat, we decided to take a swim in the pond behind our house. I had not been swimming in the lake in years. (My children, now teenagers and young adults, had lost interest in beach activities, onto other teenage endeavors that don’t involve wet bathing suits, towels, and sand between their toes.) As I stepped into the water, it was refreshingly wonderful! With Marie in tow, we each sat in a tube and paddled out to the middle of the lake. The cool water was the perfect solution for the muggy hot weather. We chatted for a while, (in sign language,) and Marie told me of the importance of wearing socks with her sneakers or her feet stink and people don’t want to come near her. She told me she enjoyed woodworking class which she had just begun, and she planned to build a house with what she was learning. We talked about teachers and boys and what her hopes and dreams are for when she “was older.” (She wants to work petting dogs and cats.)
As the conversation wore down, we both relaxed in the water, just floating and enjoying the moment. Marie took my hand in hers, a move she would have never done all those years ago when she came to live with us and would have screamed if I even touched her. I felt we were bonding anew. She shared her dreams, and now she was sharing her love. We floated in silence, watching the seagulls swoop down to get fish, and the geese fighting with them for air space. It seemed they were playing a follow the leader game, flying side by side, and then swooping into the water, geese honks and seagull squawks. We watched as the turtles poked their heads above the water. When she was younger, Marie would have taken off to joyfully capture them. But today she just floated in silence with me. More mature. More content with herself.
The time seemed timeless; we could float there all day, water lapping at our legs. But the setting sun belied the late time of day. Above the trees beautiful colors arched; pinks, oranges, purples. It was peaceful. It was relaxing. It was joyful. As we sat there in the water on our tubes holding hands…

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If you are interested in learning more about my family, here is 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

How Do the Blind See a Tree?

Most people can look up and see a tree.  To a child who is blind or visually impaired, their concept of a tree is the bark they can feel. Their concept of a tree is that it is” rough”.  If they have some vision, they can tell that a tree is brown at its trunk, but “a blob of green” above the trunk.  They could grow up and their whole lives not know what a tree “looks” like.  Expanding such basic knowledge of their world is called expanding the core curriculum. It consists of concepts that are not taught in school, but are still important lessons for that child to learn in order to grow up as an educated adult who is blind.

One topic covered by the nine students, ages six through thirteen, at an April vacation program, was the concept of trees and their differences.  During a nature walk, students found that some trees were so small they could fit their hand around the trunk.  Some trees were so large that it took all nine students holding hands to encircle the trunk. Some trunks were very rough, with deep groves, and some were smooth, with little lines barely traceable by their little fingers.

They learned that evergreen trees stay green all year, and they giggled as they carefully touched the sharp needles. They never knew that trees could be so prickly!  Under the tree, they found the pinecones from which a new tree may grow.

They learned that oak trees, in the spring, have no leaves.  They closely examined the branches of an oak with a few dead leaves still attached, carefully feeling them and making the connection with the leaves they see on the ground in the autumn. Acorns which were still attached to the tree branch were felt with much enthusiasm.  They had collected acorns from the ground underneath the tree, but to actually see it attached seemed to be a surprise. They felt the new buds on the ends of the small branches, buds which would soon bloom into leaves.

Students learned about flowering trees, in full bloom during their springtime visit.  Most students were amazed that a tree could have flowers.  In their minds, trees and flowers were two entirely different things.  But there they were; pink blossoms on the end of a cherry blossom tree branch, gentle, sweet smelling little flowers.

As they were feeling and looking at the trees up close, students were in awe.  So many different types of trees!  And they would not describe a single one of them as “rough” because they were finally able to look beyond the bark.

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(I apologize, it has been a busy summer and this is a repost from 2 years ago.) For more stories about children who are blind, please, read my book. Here is a link: https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11 The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

I KNOW there is a heaven.

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

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

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

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

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

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

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

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

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

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

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

The Joy of a Successful Life

Link

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

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

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

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

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

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

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

Therapy Dog…Miracle?

Nine years ago, when we adopted our daughter who is deaf, a friend who is blind donated to us his newly retired Seeing Eye Dog.  The dog, age 6, was getting to be a little bit too old to guide this gentleman on his hectic daily routine, but was still vibrant enough to be a wonderful family pet.  Thus she began her non-working life with us.

Brandy was a gorgeous German Shepherd with the colorful mixed color coat most German Shepherds have.  The most fascinating this about her as a pet was that she was so well trained.  She had been trained not to bark at cats or other dogs, although she was known to bark to announce the arrival of our son, Steven for some odd reason.  He liked to work with snakes and reptiles, so maybe in the guide school in which she had been trained such species had not been included in her training.  (After all, how many people who are blind run into snakes or tarantulas in their daily walks?)

In addition to having a mellow, friendly, and incredibly devoted personality, Brandy had been trained to run right outside to “do her business” (so to speak,) so there was none of the usual waiting, walking, coaching or exasperation  which could be associated with a normal dog’s method of, well, “doing their business”.  Rain, snow, mud, cement….Brandy voided upon command!  She would walk with Marie down the street with Marie closet to the side of our road. Because Marie was deaf, Brandy would keep her safe for oncoming cars.

Although she had a great relationship with Marie, Brandy tended to gravitate towards our son, Angel, whose dark moods and multiple personalities tended to keep his mind in constant turmoil.  Brandy sensed that in him, and quickly choose Angel’s bed on which to sleep.  Because Angel would frequently take to his bed if the dark demons in his brain became overwhelming, Brandy became the perfect therapy pet.  She calmed him and centered him, allowing him to tame the “World War 3” going on in his head and basically live a “normal” life.  Angel’s ability to continue on and be successful in school amazed me, and he credited Brandy with survival.

Brandy was an exceptional dog!  Not only did she sense Angel’s moods and guide Marie down the street, but her personality set her apart from other dogs.  Her job was devotion to others, and she was like a quiet Saint…always loving, accepting, forgiving and tender.

My mother passed away several years ago, and Brandy was thirteen years old at the time.  Angel took my mother’s passing especially hard, and was unable to attend school for several weeks.  Brandy was there to help him through the devastating time for this a child with such attachment issues.  His grandmother had been the one to give him gum drops when he’d been especially depressed.  And she made him custard pie on a regular basis. In is mind, he lost the only person he felt truly understood him. (She definitely knew that the way to his contentment lay somewhere in his stomach, which is not so different than many of us.)

Angel’s life changed when my mother died, and a lot of his confidence and hard won happiness had waned. He was a freshman in high school, having great difficulties adjusting to his disability in the especially raw world of teens and classes of Algebra and Forensics.  Brandy was there every day when he came home from school, and they would spend time at the end of each day unwinding, in his bed.  I began to fear that Brandy, being thirteen at the time, would not live to see Angel graduate from high school, another three years away. With the loss of his grandmother, I knew that he would not be able to adjust to the lost of his comfort pet and that any potential of a successful high school graduation would be out of the question. I sincerely prayed for a miracle..for Brandy to remain alive long to help Angel through these transitional years.

I am proud to say that Angel graduated in June.  He did so proudly, and, except for the fact that his graduation cap was too small for his very large head, he made it through the rigors of being a senior, completing senior projects and getting good grades so that he could walk across that stage with pride.  It was a wonderful day for all of is, and I said a silent prayer of thanks that Brandy was able stay around long for him to finish so successfully.

Right after graduation, Brand’s physical condition worsened dramatically to the point that she could no longer walk without falling over.  Angel himself made the decision to have Brandy euthanized.  He said he had been so selfish wanting to keep her alive for his own sake, but that he knew she was suffering and that is was her time to “join his beloved grandmother in heaven.”

So, yesterday, I made an appointment with the vet to have  Brandy euthanized.  For breakfast, I searched in the freezer and gave her a whole frozen pot roast to gnaw on, which she seemed to greatly enjoy. She had been to the groomers only a week before, and she still wore the yellow bandana around her neck.  Her coat was shiny and soft, and her cute toenails were short.  Eating that pot roast, she was happy, and Angel and I stayed with her for hours, petting her soft coat and murmuring words of love.

Her euthanization went as well as could be expected for such a traumatic event.  Angel and I were both sad and teary as the vet prepared her, but we tried not to let her know it, talking in loving and soothing tones throughout the process.  To me, she actually seemed happy and content, with no idea what was happening.

The vet was extremely sensitive to her needs, and the process went very smoothly.  The vet indicated Brandy was obviously a well-cared for dog…and did we realize that our Germain Shepherd had lived to be sixteen and a half years old?  This was a statement she repeated at least five times during the whole process.  DID WE REALIZE THAT OUR GERMAN SHEPHERD WAS SIXTEEN AND A HALF YEARS OLD????  She indicated that that was almost a miracle.

MIRACLE?  I have been blessed with several miracles in my life but somehow, in the scheme of every day life, I had forgotten that day, more than 3 years earlier, when I prayed for Brandy to live long enough to allow Angel to graduate from high school.  She had done that for him, for me, for US!  Our home life, and Angel’s future, would have been completely different had she not been there to sensitiviely calm the chaos in his mind..

Angel and I, (and the whole family of course,) have spent our days crying and mourning the loss of our beloved Brandy.  The one thing that keeps me grounded is the fact that her long life and her lovingly therapeutic affect on Angel HAD been a miracle.  We were so blessed to have had her…

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!

Twenty Ways to Get Your Child to Leave a Waterpark…

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

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

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

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

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

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

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

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

The Deaf Leading the Blind: “But I was just TALKING to her…”

My job is a social worker for children who are blind includes coordinating both a summer and winter program for the children with whom we work.  Last winter we went to an indoor water park during February vacation with about twenty-five children who are blind and “legally blind”.  The children had a wonderful time playing in the water park, on the slides, in the wave runner surfing area, and in the pool, as well as participate in the regular activities that we plan, such as playing bingo and dancing.  Getting together is a huge big deal for these children who are mainstreamed into regular classrooms in their neighborhood public schools where they might not ever see another student with a vision impairment.  I began this program twenty two years ago when my oldest son, who is legally blind, was six years old.

The winter program was a huge success!  Most notably for me, it was the first time my fourteen year old daughter who is profoundly deaf wanted to help out a group of younger girls who are blind.  Each girl had their own staff person who amicably allowed Marie to join their group to help with the little girls. Despite the fact that she normally communicates in American Sign Language, she somehow managed to be very sociable and get along well with everyone. Having normally been obsessed with surfing at the wave runner attraction, and being a somewhat selfish young lady, I had expected she would help for a little while, but spend most of her time surfing. However, I was pleasantly amazed that she did not choose her own activity, but spent all of her time in the water park playing with the little girls, helping them on the slides, holding their hands to guide them around the park, showing them where the food was on their plates, and so forth.  She was having a grand time, and the girls all seemed to adore her.

On the last night of this program. Marie was seated at a booth with two of the girls and their staff.  One of the girls all of a sudden started waving her hands wildly in the air. Prone to seizures, her staff person asked her if she was okay.  She said of COURSE she was okay, she was just TALKING to Marie!!  The laughter started at their table and  soon circled around the room as everyone realized what she had said…she was signing to her, of course!!!!

The Baptism from HELL

I don’t mean to be blasphemes, but I am sure that all you parents out there with “difficult” children can understand what kind of hell we live with from time to time.  Most of the time raising children is heavenly, or at least like purgatory. However,sometimes there are those moments when it is just plain hell!

Our son, Steven, was adopted at the age of 3 after living with us since birth.  He was born addicted to heroin and cocaine, to a mom who was an alcoholic and, (GASP) cigarette smoker.  Although we loved his cute little face very much, the rest of him left much to be desired.  He was hypersensitive to sound, touch, smell, noise and any little thing that altered the peace in his little world.  Even as a 6 month old he would bang his head on the highchair if he was “stressed”.  He needed a strictly consistent schedule with no tags in his shirts and no loud noise from the tv.  We altered our life to fit his needs and things were fine, for the most part.

Then came his Baptism day.  First off, it was a change in his schedule, something his 3 year old body did NOT appreciate.  THEN, he had to get dressed up.  I remember thinking he’d never wear a suit and tie, or even a tie for that matter, so I managed to buy a nice pants/sweater outfit.  Unaccustomed to wearing sweaters, his body squirmed in this outfit.  Our church had arranged for a private ceremony, understanding Steven would not be able to be baptized during a regular church service.  We used the little chapel so as to cut down on the anxiety he would feel in the huge church.  His dad carried him to the altar with Steven’s head buried in his chest.  My husband, myself, our older son Francis and daughter Dinora stood by with Pastor Lorraine to begin the baptism.  Steven looked up and saw the baptismal water.  “OOOOOOOH NO!!!!!!”  he screeched.  “You’re not going to put that water on ME!!!!!!”  (He also had a fear of water I’d forgotten to mention…)  He jumped down from my husband’s arms, crawled on the ground, and crawled into the first dark, quiet place he could find…under Pastor Lorraine’s vestments!  There he was, under her vestments which were over her dress…I was MORTIFIED, (thus the “HELL” part!)  She, however, as the parent of three rambunctious kids, thought it was funny.  (God bless her!!)  She felt down for where his head was and she calmly proceeded with the baptism.  (Fortunately, you could see his head clearly outlined in her vestments.)  She did the whole ceremony with him completely covered.  I had a camera to document this momentous occasion, but was at loss of what to take a picture of!  When is it over, his dad gently dragged him out and home we went.  For any other child, a celebration would have been in order, but for Steven, it was home to his usual routine.  Same day as any other day.

PS.  I obviously didn’t learn from this experience as we attempted first communion for him.  At the age of 12, he met with our pastor for one-on-one communion classes as he was unable to participate in the standard classes.   He was then to join the other children on “First Communion Day”.  When the pastor called out his name, he promptly crawled underneath the pew, and curled into a tight little ball, where he stayed for the rest of the service…