Posts tagged ‘disability’

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.

Here a Friend, There a Happiness

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My daughter, Marie, was severely abused as a toddler and young child. She came to live with us at the age of 7 after being found wandering the streets barefoot at 2 am carrying her infant brother looking for formula for him. The effects of the abuse were immediately apparent. She couldn’t stand to be touched, and would cower under the table if she felt threatened. She was angry all of the time and refused all attempts at affection. (When she was with us for a few years, she finally allowed me to give her a “fist bump” as a way of showing my love for her, a love she certainly did not reciprocate because she didn’t know what love was.)

Posttraumatic stress episodes were explosive and frequent, and required restraints and hospitalization. She had superhuman strength while in the throws of PTSD, as I am sure the EMTs and firemen who came to transport her to the hospital can attest. She turned into a super kicking, screaming, biting and hitting machine, and it was amazingly frightening to see.   If put in clothe restraints, she would eat through the cloth like a ravenous wolf. The adult restraints were too large and a smaller hole would have to be cut to fit her slim wrists and ankles. She learned to bite the inside of her mouth to spit blood and they tried to put a mask on her, which she immediately sucked into her mouth and gagged on. At the hospital, she would get a shot of Haldol, go into a trance, and wake up questioning what happened. With her hands still restrained and unable to sign regularly, her little fingers would finger spell “Where am I? Why?”

The number of PTSD episodes have subsided to once every 6 months or so. She has learned to love and be loved by her family, and, fortunately, she is making tremendous progress. Marie is going to be 20 years old this month and still attending a specialized school where she can remain until she is 21.

Marie, citing her age that she is an adult, has come more into her own. On her own, she got a tattoo of a dolphin on the inside of her wrist. She loves dolphins since swimming with them at Discovery Cove on her 12th birthday. By choosing that particular tattoo, she reasoned she could look at the dolphin every time she gets upset and it would remind her of a happy time instead of the times she was abused. Like other young adults, she has colored her hair a mixture of blue and blonde, has a lip ring and likes to pick out her own clothes. Her newest adult adventure is finding a girlfriend; recently reconnecting with an amazing girl a few years older than her with whom she attended school many years ago. They have started hanging out and Marie is giddy with excitement. (Marie has never had a real friend of any kind before.)

Yesterday the 3 of us went to Dave and Buster’s at the mall. While Marie LOVES to play the games, sometimes the crowds overwhelm her and she gets anxious, moody and socially unresponsive. Her sweet friend, who does not know the extent of Marie’s early childhood abuse, kept asking her why she was mad at her, which eventually turned into a full blown argument in the car. By the time we got home, her friend was no longer talking to her and said she was never coming to see Marie again. Marie went down and sat on the wall overlooking the lake, her head drooping down. She texted me on her phone, “Help Me”. Joining her on the wall, I noticed she was crying, something I have never seen Marie do. The tears spilled out of her eyes and were running down her cheeks like an ever-flowing fountain. Her mouth was quivering and her sad eyes said it all. I hugged her and the tears turned more torrential. After a while she signed to me “She thinks I’m mad at her and that I have an attitude. I don’t know how to tell her.” Meaning she didn’t know how to tell her about her abuse and that sometimes it still affects the way she acts. She didn’t know how to tell her how much she loved her as a friend, her FIRST friend, and she didn’t want to hurt her, but sometimes she couldn’t control her emotions. She asked me to come with her to talk to her friend to help her explain.

Her friend was annoyed. Marie began about her family history and her friend said that SHE, too, had a mother addicted to drugs and that SHE, too, had been adopted. She said she learned to just “get over it” and why couldn’t Marie? With this criticism, Marie ran from the room and back to the wall by the lake. I explained that Marie had an extremely traumatic childhood, far and above just her mom doing drugs. I explained the hurt, the hospitalizations, and the challenging life she has endured. Her friend’s angry face softened with understanding. As I was talking, a tear slipped down her cheek and she got up and went down to the wall by the lake. When I looked out the window, they were both hugging and laughing.

I pray that Marie’s friend will continue to be her friend and accept her with all of her emotional baggage. It would take an amazing friend to do that, and I have a feeling she IS that amazing!

Dad and Daughter shared Ice Cream

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My heart has been very heavy lately, which is a feeling that I am very unused to. The fact is, as my children age, some into young adulthood, their problems are more real life problems, not just a tantrum in the grocery store. 2 of my younger children, with as many good traits and skills that they do have, do not having the capacity to be fully self-sufficient as adults, including incapacity to maintain a paying job. Yes, SSI is a possibility when they are adults, but even that provides only poverty level income. They are my family and my financial responsibility, which necessitates looking at the ability of our extremely diminishing finances to care for them during their lifetimes.

Although hubby and I both work, often 6 days a week, and are considered solidly middle class, our bank account does not reflect this. Every time Marie has a PTSD episode, (every 6 weeks to 2 months,) the ambulance bill exceeds $1000, money that is not reimbursable. (She requires additional emergency personnel because restraining her safely requires at least six, strong professional emergency adults.) We have funded one college tuition, and are currently funding another at expensive colleges to best meet the special needs of my children, (for which they received no financial assistance because we are, after all, “middle class”…) In order to attempt to give them the best education to be able to succeed despite their disabilities, we subsequently have taken a large second mortgage on our home. And then a third… Hubby and I live “paycheck to paycheck”, as I am sure many parents of children with disabilities live.

But I digress…what I was saddest about is that Steven now has partial custody of a beautiful, vivacious daughter who is one year old. (Note to parents: make sure you talk OFTEN about birth control to your teenagers, especially your teenagers with disabilities…) He, and we, do not have any extra money to support her in the manner to which we are accustomed to supporting our children. With his Asperger’s (and extremely capable skills in caring for animals,) Steven is a doting dad. Not working, he has tons of time to spend with her and can generally be seen sitting on the floor of the living room playing with her interactively, rocking her for a nap, singing her nursery rhymes, or taking her in the large, fenced in back yard to swing and explore and play to her heart’s content. What he does not have is money to pay for her needs, and this breaks my heart. This morning, he asked if I have any “change” and if he can go look in the car if there are any quarters that have fallen behind the seat. At last count, he’d managed to scrape up $2.19.

Driving home today, I was stopped by the light near our house. On the corner is an ice cream stand where our family often used to take a walk for ice cream. The kiddos would giggle over whether they would get the chocolate jimmies or colored ones, (the sprinkles were free!) Today, I noticed the young man sitting on the picnic bench. Across from him was a stroller with a young girl in it. Both had tan skin and wild, curly black hair. Holding a small container of ice cream in his hand, he was using a spoon to feed her, laughing and playing the “airplane” game to put the ice cream in her mouth. She was giggling also, throwing her arms in the air as if to say “wheeeeeee!” after every spoonful. Steven exhibited pure happiness, that special kind of happiness a parent has for their child. They were joyful and the fact that she wore cheap diapers and wore hand me downs that didn’t always fit did not matter at all. Suddenly I felt a little bit better about not have any money, because Steven taught me today that money does not makes life purposeful, but it is love, which is free. Life is good!

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The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen
The link to the book:
https://www.createspace.com/5321986?ref=1147694&utm_id=6026

That Disability Line Looked Awfully Tempting!

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Needing to get a picture ID, Marie and I went into the black hole named the Registry of Motor Vehicles. Despite many years of revamping, that place can still take 4 hours to navigate. It was with this background that I bring up the option of the line for people with disabilities. Actually, there WAS no line. Tempting. MMMMMMMM. Marie has a disability. Teaching her to be more independent, I was actually only accompanying her while showing her that SHE can maneuver through the system. Without parental assistance, she really DID have a disability. But I have raised my children not to see their disabilities but their abilities. She may not talk or hear, but, armed with all of the appropriate paperwork filled out and the certificates of existence she needed, (birth certificate and social security card,) she has the capabilities of writing what she wants to say and reading back what the other person writes to get her ID herself. She can function as fully as a non-deaf teenager in the registry. And that meant she was fully capable of waiting in line like everyone else.
There have been many times in life that a disability line looked tempting, especially handicapped parking. What parent of a child with a disability hasn’t dreamed of getting that front row spot. Granted, many parents of children with disabilities DESERVE that front row spot, but not us. My kiddos can walk fine. No need to park there, even if the only other spot was a half mile away. But it certainly was tempting…
Just like that line at the registry. After about an hour of snaking through the regular line, the disability line looked awfully lonely. Marie could just zip in there and be done with it. But Marie isn’t disabled. She can communicate fine, just differently than others. She does not need a special line.
And such is our life. To let the children think they can use a disability line to get through life would be unfair to them. They have been raised to know they can do everything anyone else can do, they just may have to do things differently. No disabilities here!

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The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen
The link to the book:
https://www.createspace.com/5321986?ref=1147694&utm_id=6026

We Had a Rockin’ New Years Eve with the Three Stooges!

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Celebrating New Year’s Eve with the children has always been a challenge. They have different tastes and interests. It is especially difficult with Marie because she is deaf. Movies are okay for her with closed captioning, but she only has a first grade reading level, so most of the words are beyond her understanding.

On Christmas day hubby hit the jackpot. Our oldest son, Francis, bought him the entire collection of the Three Stooges! We took advantage of this thoughtful gift on New Year’s Eve. The whole family sat around the television, gourmet pizza in hand, and apple juice as our simulated alcoholic drink. And we watched the Three Stooges. For HOURS. From 2014 to 2015. Their slapstick humor, so completely socially inappropriate now, was so funny that we doubled over with laughter and tears ran down our cheeks. THE WHOLE FAMILY! ESPECIALLY MARIE!!!!! Near the end of the evening, Marie, who had been sitting on the couch next to her dad, leaned over and put her head on his shoulder and her arms around his robust body. Almost afraid to move lest he scare her away, he gently put his arm around her, and looked at me and smiled. This child, who has a serious attachment disorder and from whom affection has been doled out in minuscule doses, was cuddling with her dad!

Afterwards, when we were all laughed out and the morning was near, one by one we reluctantly sauntered off to bed. While hubby and I were cuddling before allowing sleep to take over, hubby began to cry. “Did you see how Marie cuddled with me?” he asked. “It was the best night of my life.”

Yes. Yes it was!

All It Took was a Few Daisies

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Things have not been going so well lately. Marie has been in the hospital for trying to swallow a box of staples during a PTSD episode. (The pain of the memories was just too much.) The staples, thankfully, passed through and did no damage, but her recovery from the incident has not passed so easily. She is sad and shaky as she works through her most recent memory, that of a “john” pulling a gun on her mother. She remembers hiding under the bed and watching in terror as his footsteps thumped by, sure he would find her and kill her at any minute.

Steven has had a similar fate. As a young adult, he chose not to take his medication anymore. He didn’t like it because it made him feel “sleepy”…instead he is hyper, agitated, argumentative, obsessed and out of control. When you have a mental illness when you are a child, you are hospitalized and given great care. When the same thing happens when you are an adult, you are arrested for domestic violence and thrown in jail. Not the best situation, and extremely difficult for a parent to handle. (Yes, I am being selfish thinking of how this affects me.) Maybe when he is released he will agree to take his medication again, medication which has enabled him to live a full and relatively happy life. Medication which has calmed his OCD and aggression. Medication which has smoothed out the wrinkles in his brain created by in utero exposure to cocaine, heroine and alcohol. Medication which has made our family life “normal”.

Yesterday, (Thanksgiving) was a solemn day for our family, missing two of our beloved children. In preparation for the day, I had cleaned the house as my husband had shopped and prepared the food. I had hoped to get to the store for a floral centerpiece to add some happiness to our table, but time just didn’t allow. Setting the table, I felt sad, abandoned, and empty inside, unfamiliar feelings for me. Just as I was allowing the despair to set in, there was a knock at my front door. There stood a middle aged woman dressed in a neat, black coat. I didn’t recognize her at first, but as soon as she introduced herself, I remembered that she had a child in the same class as Steven ten years ago. I forced a smile and asked her how she was. She had been thinking of me, she said. She remembered me from all those years ago and she remembered the challenges our children faced. She had made me a beautiful floral centerpiece for our Thanksgiving table! She said she knows how hard it is for her to raise one child with mental illness, and that she has admiration for me raising several. I thanked her and held back tears as I hugged her tight.

This amazing centerpiece is filled with bright orange mums, cheery yellow daisies, and red roses, whimsically arranged with a big Thanksgiving Day bow. Looking at it, I can’t help but smile. It is beautiful! It is hopeful! It is joyful! It was just what I needed to get me out of my despair and realize that this, too, shall pass. And the reminder came from a woman who was almost a stranger to me. I am so thankful for the timing of her thoughts of me.

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

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