Archive for the ‘deaf/blind’ Category

Just Like a “Call the Midwife” episode

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For some odd reason, I love the show “Call the Midwife”. Every conceivable scenario for “birthing babies” (obscure reference to “Gone with the Wind”) is explored. For this reason, I will be sharing the birth of my brother.

I got swept into the drama of childbirth at the tender age of four, an early memory that was etched into my tender brain. Several months before my mom was supposed to go to the hospital to get her new baby, my dad ushered both of us into the car, handed me a very large bag of Hershey kisses and dropped me off at my grandparents. My grandparents were not your usual huggy kissy type, but the standoffish, can’t stand kids type. So I sat there alone in their oven of their Floridian sun porch, eating Hershey kisses and watching Captain Kangaroo and Howdy Doody on their tiny tv. As the chocolate melted, it was imperative to eat them right away, which, of course, I did! Covered in melted chocolate, I was able to enjoy the taste for quite a while afterwards, licking my fingers and scooping up melted spots from my dress.

When mom came home from the hospital, I jumped up and down in excitement to see my new sibling. Mom was not her cheerful self, but managed to open the blanket to show me my new brother. I had never seen a new baby before, so I thought this one just wasn’t done yet. He certainly was tiny! His baby blue eyes were tenderly open, but in the middle of his face was a gaping hole where his nose and mouth should be. Still had to grow in, I thought in my childlike innocence. He had these huge ears that stuck straight out. He was going to be able to hear everything with those ears! He was a fine looking baby!

In my childhood innocence, and before post-partum depression was a diagnosis, it seemed odd that my mother spent all of her time in bed, crying softly. She picked Curtis up to feed him with an eyedropper, but most of the milk dribbled down the side of his mouth spot. Her tears would continue to fall, and I could tell she was upset because he didn’t seem to want to drink the milk. When she laid him down for his long daily naps, he would make mewing noises like a cat. I thought it was cute until learning later that he was crying.

My childhood was turned upside down. My loving, sweet mom changed. There were no more of her tender kisses and words of encouragement. She didn’t want to play games with me, or go for one of our walks around the block. In her place was a stranger.

I was brave and tried to take care of myself, but my heart ached at the loss of my mom. She spent all of her time in bed, sleeping or quietly crying. She continued to try to feed Curtis, but most of the time the milk spilled out and she would put him down again for a nap, where his mewing was heard constantly. Sometimes, when she was asleep, I would pull a chair next to his cradle and unwrap Curtis, letting his tiny fingers hold onto one of mine. I would sing songs my mom sang to me, and sometimes he would stop mewing. Time would go by with me sitting there, stroking his bald head and telling him the story of The Three Little Pigs and Goldilocks and the Three Bears. I would be pleased with myself if he would go to sleep and not mew. He looked so peaceful and sweet!

A few weeks after Curtis was born I was sitting in the living room eating out of a cereal box and watching “Lamb Chop”. The sound of the rocking chair in my mom’s room indicated she was again fruitlessly trying to calm Curtis as he mewed. Her room suddenly brightened, as though she had turned on a million lamps. Streams of light spewed out the door of her bedroom into the living room. It was curious and strange, but I was just a kid and saw new things every day, it was no big deal. Returning to watching my favorite lamb puppet sing and dance, I was annoyed that the streams of light made it difficult to a see the tv.

From that time on, the sleeping/crying mom was replaced with my real mom. Carrying Curtis out of her room for the first time, she came over and gave me a kiss and told me she loved me. My own heart softened, and tears started to slide down my cheeks in relief. I had been brave and tried to take care of myself, but having someone else care for me was much preferred.

Mom and I went to the hospital so she could learn how to feed Curtis better. They showed her how to thicken the formula so it would not spill out of his mouth spot. She learned to squeeze little amounts in and wait for him to swallow it. Soon, both Curtis and mom got the hang of it, and he was happily gobbling down the formula. His mewing, which we had become accustomed to, stopped. As weeks went by, he gained weight and I was sure he smiled at me. Of course, it was hard to tell because he had such a strange mouth spot, but his eyes twinkled in such a way that I could tell he was smiling. What a lovely new baby brother!

Fact #1: My brother had been born with Rubella Syndrome, and was hearing impaired, legally blind, severely developmentally delayed and had several physical deformities. He was born this way because when my mother was pregnant, she came in contact with someone who had German Measles. Thankfully, a vaccine was invented to prevent this disease, which can harm more than the carrier.

Fact #2 It was years later that my mom explained what happened that day when the bright light filtered out of her room. She had been rocking mewing Curtis, herself crying and uncharacteristically cursing her life and the life of her deformed, newborn son. Unexpectedly, she was engulfed in an unbelievably bright light that emitted the feeling of unconditional love and encouragement. It washed the sadness out of her, and seemed to tell her everything was going to be all right. She knew it to be a Divine Being, and this experience changed her life, and mine, forever.

 

 

To read the life story of Linda’s sweet brother and Divinely amazing mother, along with her own passion for caring for children with disabilities, please purchase her book; The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane. It is available on Amazon and Barnes and Noble.

 

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How Do the Blind See a Tree?

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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

And The Paper Creeped out the Bottom of the Door

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A very large, very tall, very old 15 passenger van with a wheelchair lift with over 138,000 miles on it is my vehicle. Not my ideal choice, but “it is what it is” as all of our money is allocated elsewhere. (All those cute little kiddos with disabilities grow up to be cute little adults with disabilities who, unfortunately, find it impossible to be able to work. Not that that makes them any less wonderful, enjoyable or successful, it just puts a little extra strain on our family budget.)

In the van on Wednesday, I was enjoying a beautiful, crisp autumn day, with a slight wind moving the branches around for the trees to show off their few remaining colorful leaves just waiting to join their friends on the ground. Contentment filled the van as I hummed while I drove. I didn’t quite do the lovely singing I usually do because I was on a mission for work. (While driving to make home visits is not usually included in my job description, on this day I was helping out a colleague.) Because I am awful with directions, “mapquested” directions lay on the floor next to the driver’s seat.
As the van whisked along on the interstate highway, I noticed that the directions had moved towards the door. Keeping one eye on the road and one eye on the directions, I watched with panic as the papers moved closer to the door…down one of the steps…down the next step…and finally on the third step. It happened in the blink of my eye (the one that was watching the papers!) As I was in heavy traffic, it took a while to maneuver to the side of the road to stop, and the papers inched towards the bottom of the door. (The door gasket had long ago aged out and fallen away, leaving a space at least an inch wide at the bottom.) Panic set in as a piece of paper entered the crack and ever so slowly inched out…it was like seeing my life flash before my eyes, quarter inch by quarter inch, as the paper made its way free out of the opening. It was so surreal it reminded me of a cartoon…person chasing paper in the wind and the paper is always one step ahead, teasingly just a little bit out of reach! I would have laughed, but inside I was sick to my stomach. My directions were gone! The client I was going to be meeting would be sitting, forlorn, at her home, waiting patiently for the me that would never be able to find her house.
But WAIT! There was another paper there, clinging to the bottom step. Maybe I could salvage the final steps of the street directions. By this time, the van was safely stopped by the side of the road and I flung myself out of the driver’s seat onto the floor of the van to look down the stairwell. On my knees looking down, almost crying with happiness, I grabbed that one precious piece of paper…it included the final steps to get to the client’s home. I would be able to find her! I would make that visit! I was soooooo happy!

While in the scheme of things, losing mapquested directions would not be the end of the world, in retrospect it symbolizes the constant struggles one has when raising children with disabilities. There are often solutions to their problems, but they are flighty and hard to come by. Sometimes they flip through our fingers through no fault of our own and we are left in a slight panic, (sometimes a huge panic…) Fortunately for me, I have always found that last page to my mapquested directions, just enough to make life work out. Just enough to relieve my panic and restore the happiness in my heart. Such is the ups and downs in life…

For Sentimental, Sappy Souls

On Columbus Day, my husband and I spent a wonderful day just driving around and enjoying the autumn scenery. I don’t know about you, but I seem to have an unusual sensitivity to the beauty in nature, and was once again overwhelmed by the beauty of the bright white and yellow streaks of sun streaming down through the white puffy clouds. Such a sight always encourages me as if reinforcing the fact that yes, there are clouds, and yes there may be rain, but that sun is still up there in the sky, overseeing it all, just waiting to break through and make things better. As an added visual treat, the sun shone so brightly on the tapestry of peak autumn leaves: oranges, reds and yellows, that I felt a need to wear my sunglasses, but with them on I would not be able to fully appreciate the effect of the over-the-top, gasp inducing colors. No photo, piece of artwork or beautifully sung song could have replicated the intensity of happiness that brought tears to my eyes and joy to my heart.
My husband and I sat, holding hands as he drove. There was no need to say anything. We were at peace, pleased to have such a respite after a hectic week of raising children and dealing with problems. We were in our own beautiful bubble, cell phones turned off so as not to ruin the interlude. It was a wonderful day!
Upon pulling into the driveway of our home, I spotted the two small maple trees which Marie had planted a few years ago. She had excitedly dug them up when they were fragile saplings with broken branches, and planted one on each side of the driveway. She had added gravel at the base of each, and attached a tall, straight, thin stick to keep them growing upright. I don’t know why I hadn’t noticed them before. I had NOTICED them, of course, but I had never really SEEN them. They had grown to be about four feet tall, straight and strong. My breath stuck in my throat as the brilliant, bright yellow leaves danced happily in the gentle breeze. They were a growing metaphor for my daughter, blossoming and beautiful and holding the promise of a bright future in their little yellow leaves. Despite once being fragile and broken, they would grow tall and amazing and fit perfectly in this world, reassuring me that my daughter, who was also once fragile and broken, would grow tall and amazing and fit perfectly in this world.

“It Smells Like Flowers and Sunshine”

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

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

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

But She was Just Talking to Her!!

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My job includes coordinating both a summer and winter program for children who are blind and visually impaired.  Last winter our lovely little group of about 40 went to an indoor water park during February vacation. If you have never been to an indoor (or outdoor for that matter) water park, you are missing one of life’s most wonderful playgrounds with water slides for all ages and skills. My age may indicate I could manage the “black hole”, but my skill kept me in the kiddie area!  (Ohhhhh!  The KITTIE pool again!!!)   Lounging in the lazy river on a double tube was a great way for staff to keep an eye on their child without letting them float gleefully away amongst the throng of people enjoying the current. A huge water playground centered the park, with slides and little pools and tons of water play, including the huge bucket of water atop the structure.  Every so often, the bucket, filled with water, would tip over and the torrential water would come gushing down, soaking everyone as though…..well….as though a bucket of water was dropped on their heads. Because my daughter, Marie, was also on school vacation and she joined us, I chose this particular water park because it featured a surfing pool.  Marie LOVES to “surf”, and on every other occasion we have come to this facility she has spent the entire day doing so, waiting, nose pressed against the glass, at the door first thing in the morning to come in, and being the last one for the security guard to throw out at closing time.going to this water park.

My big surprise was that Marie wanted to help out a group of younger girls who are blind.  The girls had staff who amicably allowed Marie to join their group. 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 such a strong love for “surfing”, my expectation was she would help for a little while, but spend most of her time surfing. Surprise of surprises!!!!  My wonderful daughter did not choose her own activity, but spent all of her time with the little girls, helping them on the slides, doing the “sighted guide technique” to maneuver around the crowded park, showing them where the food was on their plates, (using the clock method,) and so forth.  Marie was having a grand time, and the girls all seemed to adore her.

On the last night of this program. Marie was seated in the booth at the restaurant with two of the girls and their staff.  One of the girls all of a sudden started waving her hands wildly in the air, not just once, but she kept going! Prone to seizures, the medic ran over and asked her if she was okay.  Of COURSE she was okay, she said, 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!!!!

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To read more about our life, here is a 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/

“Hard Pieces of Confetti”

I coordinate activities for students who are blind, and I always try to make sure that everything is accessible for them, that is, multi-sensory and in the proper large print or Braille format.  I got a little more than I bargained for last Saturday when we had a Happy New Year Party for them.  Because it was AFTER the new year, I gleefully shopped for party supplies that were 75% off.  (Gee…if I used the same theory and we celebrated Christmas AFTER Christmas, I would have saved a ton of money…but I digress…)

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Knowing that the children love novel items, I purchased a large supply of “crackers” or “poppers”, such as in the above photo.  During the party I thought they could pop them overhead, and feel the confetti rain down on them.  I was mortified when the first popper was popped. It had little toys in it; a little maze, a little top, a little yoyo, and other items that were waaaaaaayyyyyyy too small for these children to be able to see and play with.  I had purchased a huge quantity of them because they were so reasonably priced, (darn that frugal shopper in me!)  When I looked at the contents, I knew it would be impossible to use them because they were not accessible.

Or WERE they…

Seeing as none of the children had noticed that first popper and its contents, I told them there was a new strategy to our popper game.  They could hold them up over their heads, pop them open, and feel  the “hard pieces of confetti” that would rain down upon them.  Excitedly, they opened the poppers as the little toys bonked them on their heads and fell soundless to the carpeted floor. “I feel it!  I feel the hard confetti!” they giggled and said delightedly, asking for more! More! More!  They had a great time at the New Year Party, and the sound of their laughter still echoes in my mind making me smile.

Thinking about it, I realized that the poppers WERE accessible.  The regular confetti in them was so tiny and light that the children were not really able to feel it as it rained out.  But the “hard pieces of confetti”, now THAT they felt!

 

 

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

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

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