Archive for the ‘children with disabilities’ 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.

 

I Know Why My Family Had To Travel

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I had always hated driving, which may have something to do with the fact that I traveled cross-country for most of my childhood years. My life lately includes a lot of it, with a granddaughter in Northern Massachusetts and a daughter attending school in Hartford. Surprisingly, I have learned to enjoy it! I find myself bopping away to music, using my right arm as a conductor’s baton, (one, two, three, four; the movements from music class carefully ingrained into me.) Worse yet, one can find me huskily singing along with great enthusiasm.

Taking non-highway routes as my father always did, the variations of scenery are fascinating. Children play on swings, grandmother sitting nearby, and clothes swing on a clothesline; do they use an old wood stove for cooking? Do they have an “icebox” instead of a refrigerator? Have I crossed over into the Twilight Zone? I remember driving through the same scenes as a child.

Many of the houses are memorable. One with natural wood and white shutters has a toddler standing in the window, waving, green curtains framing her. It is only after a few trips that I realize that that same child is always in the same position, waving, but wearing different clothing. It is not a child at all, but a doll that is lovingly cared for and placed in a prominent spot for all to see. Another red shuttered house has a flag waving on the front porch, a decoration to herald in the seasons and special occasions. With St. Patrick’s Day done and over, a Welcome Spring now blows in the wind. Driving, I take stock of such silly things as how much wood is piled in front of the lumber factory. (During the winter, the pile has diminished.) I was excited to drive by the nursery this spring.  During the winter after the holidays, it had withering Christmas Trees and wreaths, and was a  stark and unwelcome place. (The owners were probably enjoying sunny Florida.) Now, it is abloom with colors, flowers blazing in the sunlight, sunflowers winking at me, mums in pots and rose bushes awaiting planting.  Such a joyful place to drive by.

It was only as an adult that I realized that my dad and our family traveled so much because of his severe posttraumatic stress from the war. We criss-crossed the country, driving on the back roads. Driving hypnotized him into peace, keeping the awful memories at bay while experiencing the delightful ones of finding new places and exploring the many geographical areas of the country.

Driving the back roads has become more important to me now. No flash of highway exits and speeding cars, but leisurely driving through the countryside, relaxing my thoughts. Often, when observing the bright blue sky and puffy white clouds, the bright yellow sun will make its way down as a brilliant stream of light, and tears will inexplicably sting my eyes. Pure peace and joy. I have finally been able to fully understand the importance of traveling.

 

 

Please consider purchasing my book, The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane.

Thank you for the support!

 

 

 

What to Learn from Baby Birds

 

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I drive slowly down my street to get home, which includes an area of trees, wild grasses and the occasional soda can or lost piece of paper. It is usually a non-committal drive, with my head swirling with ideas and concerns, not paying attention to the road at all. Yesterday was different. In between the trees was a mother bird, brown breast with brown-flecked wings. 6 inches in front of her was her tiny twin, obviously her offspring. The little one was walking away from her, turning to look back every second or so. Her beak seemed to say, “Go on, little one,” as the tiny bird inched farther along from her mom. It was such a sweet situation to observe!

Of course, all parents have gone through the same thing, pushing our little ones out of the nest. It is an 18, (or 19 or 20) year push. Lessons start early. An infant learns that he can depend on us to meet his needs, and trust that we are there for him. As a toddler develops, he tries to stretch the boundaries, asserting his own will, sometimes throwing a tantrum. As parents, we teach him how to handle his frustration differently, diverting tantrums into learning experiences. We give him lots of choices so that he feels in control, and lots of activities that he can do independently, giving him that sense of self he so desperately needs to develop. When it is time for school, we send them off like mother birds, nudging them along towards independence. We smile, wave, and hide the tears as he goes off to school for the first time, making it a great independent experiment!

By our own modeling, we teach him to be considerate of others, to share, to accept and to encourage. It is by demonstrating the “do unto others” concept that he learns not only his own value, but the value of all human life.

My oldest son, Francis, a manager for a large tech company, goes out of his way to hire individuals with disabilities. He often remarks it is easy to overlook their capabilities when presented with their physical impairments. As a teen, he used to build houses for Habitat for Humanity and teach Sunday School. As a teen, my daughter, Dinora, raised money for the development of a soup kitchen in her native Guatemala, even visiting and working there herself when she graduated from college. Even now, as a successful make-up artist, she regularly sends them money. When younger, Steven, with the weight of all of his own problems, looked kindly upon others, volunteering to help people carry groceries or donating his precious change to someone in need. (I will never forget traveling the subway in Boston and he kept asking me for change to give to all of the musicians and beggars down in the tunnels. He was devastated when I ran out of money.) Angel, who currently works 2 jobs to pay for his car, continues to make time to work at a camp for children who are blind where he has volunteered since he was 14. And Marie, who has so many issues herself, takes pride in leading a young schoolmate with Down Syndrom to get his daily medication from the nurse. She is gentle and kind and considerate of his special needs.

As that mother bird nudged her birdling towards independence, we need to nudge our own children to care about others. The future of Peace depends upon it.

 

Termites Aren’t so Bad

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My oldest son, Francis, was born “legally blind”. His visual acuity stabilized at 20/400. (In layman’s terms, what a fully sighted person could see 400 feet away, Francis could only see blurrily at 20 feet.) He used his hearing so well that it was easy to forget that he had impaired vision, but every now and then something humorous would happen to remind us!

One Friday night when he was about three years old, he entered the living room as my friend and I quietly sat amongst the pillows on the couch, munching away on buttered popcorn, and watching “Dallas” on television, (our ridiculously favorite TV show at the time.) He toddled toward where we sat and without hesitation climbed onto my friend’s lap.

“Why, HELLO there!” she exclaimed excitedly, since Francis had previously been very shy with her. He looked startled and then began to cry hysterically. He thought that he had crawled onto my lap! He could see well enough to distinguish that there were 2 figures on the couch, but was unable to focus on the differences of our faces. From that moment on, when he entered a room, he would say “Hi, mom!” and I would respond, “Hi, sweetie!” so he could tell from afar which figure I was. At the age of three he had already learned to make accommodations for his vision loss.

He made similar accommodations when he started. He loved going and had many playmates but seemed to develop a deep friendship with a little boy named Eddy, whom I had not yet met because his mom dropped him off at a later time. Francis would come home and tell me that he and Eddy played with blocks or outside in the playground or cleaned the hamster cage together. I was not only excited that he was actually telling me about his day at “school” but relieved that he was able to socialize and make friends.

One morning my lazy body did not want to get out of the comfy bed on time, so he was driven to school much later than usual. I accompanied him into the building and saw the entire class sitting on the floor listening to their teacher read a book. At first glance, the sea of toddlers looked like a blur of Caucasian, light haired children. Francis scanned the room with his limited vision, spotted Eddy, and walked over to sit down next to the only African-American child in the class. Francis was one smart kid…for his best friend he chose the classmate who was easiest to pick out!

Francis had a wonderful, normal nursery school experience, with one notable exception. The school invited an exterminator as a guest speaker who regaled the class about the abundance and peril of termites munching on the wood of houses. Francis came home terrified at the possibility of having them in our basement. I had never seen him so anxiety ridden and he developed problems falling asleep and nightmares. After about a week of this, I finally asked, “WHY are you so afraid of such tiny bugs?” He burst into fearful, explosive tears. “TINY????” he replied. “THEY ARE HUGE!”

Driving through Providence, RI, Francis had previously seen the only termite of his young life, the famous “Big Blue Bug” atop a building on Route 95, which is 928 times the size of a regular termite. No wonder he was so petrified! His understanding was that termites that large roamed throughout his basement and were eating his house! After I stopped laughing, it was explained to him that the Big Blue Bug by the side of the road was a joke and that termites are tiny. Then his dad and I took him downstairs, searched and confirmed that our house was, in fact, termite free. Happy dreams were his again.

 

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If you want to read about Francis’ hugely successful life, including skiing, captaining a sailboat, obtaining a Ph.D. from Cambridge University, and eventual career as a high level manager at a famous Silicon Valley computer company, please purchase my book, The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane through Barnes and Noble or Amazon.

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

Let Them See You in Me

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My youngest son, Angel, has not been the topic of much of my writing. For some reason, I shelter him and his Dissociative Identity Disorder. It is an insidious mental illness which developed because of severe, continued, horrific early childhood abuse. It has taken him many years of counseling to adjust to the fact that he has twelve personalities that don’t always work together or even know what each other is doing. Even though the special education system in our town has given Angel a first rate, accepting and supportive education, his teenage years have been a real challenge. Angel has a very angry part that spews hatred and vile threats which are too X rated to explain here. Friends who don’t know of his illness have called him to their defense in the middle of the night because Angel’s angry part would willingly and effectively threaten the bullies bothering them. His friends had also taken advantage of his innate kindness and willingness to help, and he found himself driving them everywhere until his gas tank (and our bank account) was empty. Friendships held little advantage for Angel.

And then he found a wonderful young man named Christopher! He and Christopher had been in elementary school together and just happened to reconnect. Christopher provided a friendship that asked for nothing in return, a new feeling for Angel. Christopher encouraged Angel to join the youth group at church. Pastor Joe, whom I had called to alert to Angel’s eccentricities, took a personal interest in befriending Angel. What a huge difference this has made in my youngest son! With a newfound feeling of acceptance for himself and his parts, Angel is beginning to make real friendships without having to hide his disability. Little by little he has discussed his condition with these two accepting individuals. And they still like him!

This morning I was driving home from church and a sense of great appreciation for Pastor Joe and Christopher filled my heart. While driving, I changed the radio station to K-LOVE, my favorite station, which, unfortunately, does not come in very well in my area. Through the static I could make out the songs, which were only background noise anyway because I was deep in thought. It dawned on me that Christopher and Pastor Joe were gifts from God, and that, through them, I could feel God’s deep caring for Angel. Such a thought warmed my heart with happiness and joy. And at that EXACT MINUTE, the radio station became perfectly clear and the song “Let Them See You In Me’ played. My jaw dropped at the timing. Coincidence that this radio station should suddenly come through loud and clear and play the exact song to match my thoughts????? For me, it was just one more confirmation that God is alive and well and lives through some wonderful people!

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To read all about Angel’s early years and diagnosis, 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 had “THE” Talk with My Teenage Daughter

If you have been following my blog for a long time, you may know of my daughter, Marie’s, early trauma and severe abuse. When she came to live with us at the age of 7, she insisted that she was a boy, not a girl. She wore boy clothes and had a boy’s haircut. She even begged the pediatrician to sew a penis on her! Bless him for not being shocked, but for telling her that decision would have to wait until she was an adult.

Because she is deaf, she didn’t hear when I’ve called her my daughter and when I’ve used the pronoun “she”. It also didn’t seem to faze her that her name was a girl’s name. After the abuse she lived through, my goal as a mom has been to make her feel as comfortable with herself as possible. If having a crew cut and wearing boys’ underwear suited her, so be it.

Marie insisted she was male right up until she got her first period. At that point she conceded to me that she WAS really a girl, (no denying that fact,) but that she wanted to appear to be a boy so that no man would “hurt her”. This was understandably a clever accommodation on her part!

Enter Marie the teenager…and “THE” talk about sex… She brought the subject up as we were watching a teen movie on television where the heroine and hero kissed. Marie did most of the talking, (in American Sign Language of course,) asking me who was better for her to “like”, boys or girls. She said she has had childhood boyfriends and girlfriends, but that she didn’t know which she should “like” for a real mate whom she would someday marry. She looked at me with questioning, soulful eyes as I put on a brave face, pretending to be wise. The answer was simple, of course. I told her that she would end up finding a mate with whom she would feel comfortable having sex. SEX????? She signed, aghast. She wasn’t talking about SEX…..in fact, she was NEVER going to have sex….she just wanted to know whom she should marry! And just like that she dismissed my answer with a wave of her hand and went back to watching the movie….

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To read more about our life as a family, 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

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