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

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

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

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

 

If you would like to read more about my adventures in child rearing, please read the book ‘The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane”, available on Amazon, Barnes and Noble and I-Books.

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.

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 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…