Archive for the ‘children with disabilities’ Category

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

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…

I Wonder How My Name is Pronounced in Chinese

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I am thrilled to announce that my book,The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane, has been produced by e-Book Dynasty into Chinese!  I am hoping to inspire Chinese parents to accept their children born with disabilities with love and enthusiasm, enabling the family to live a productive and happy life.  If you know anyone who reads Chinese, please pass this information along.  Likewise, if you know anyone who reads English, please pass along information on the English Version.

Gee!  I wonder what my name sounds like in Chinese???????

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