Archive for the ‘disability’ Category

‘Twas Once a Child

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My daughter, Marie, has reached adulthood, having graduated from a residential program that had services for both her deafness and her mental health issues. This is the age of worry for any parent, especially one with so many challenges.

When she came to live with us at the age of seven and we were told she was “just deaf”, we could not have properly prepared ourselves for the roller coaster ride of a life she, and we, would have. She was a wild child, blonde hair askew, eyes angry, mouth so hungry she would hoard food under her mattress. She was very angry she had been removed from her mother, (for doing unspeakable acts which shall remain unspoken.) Despite providing her with a healthy, well cared for childhood, Marie’s disposition had been preformed. She would lie, steal, beg strangers for money, and reject all of our efforts to parent her. A hug and a kiss would throw her into a fury. Discussing our parenting situation and our need to show her love, she reluctantly let us “fist bump” her. Years later she apologized and told us her birth mom made her promise not to hug or kiss us, and that we really wouldn’t be her parents. It took us many years of fist bumps before she would accept a hug, and many years more before she would let us kiss her. She is now a young adult, and freely hugs and kisses us if the mood suits her. She shows genuine affection and appreciation, the highest reward any parent could expect from an original wild child.

Although Marie can be very capable, she has been unable to live in a non-structured setting because of her unstable bouts with Post Traumatic Stress Disorder. For those unfamiliar with this life altering condition, it is experiencing horrific memories so acutely that one becomes “in the moment” of prior abuse, crazed eyes staring back as though at her accusers, ready to defend herself with flailing arms and legs and gnashing teeth. An ambulance ride to the hospital and sedation was the only thing that could bring her out of her experience. It has always been especially tear inducing, (for me,) when at the hospital, with her hand in restraints, she would wake from the sedation, look around, and finger spell (ASL) asking me where she was, having had no memory of the event. Next she would say her throat hurts, (from screaming, no doubt,) and ask for a Popsicle, which she would skillfully eat while still in restraints.

Marie is now formally an adult. A lot of planning has gone into finding an adult home for her, one that would be staffed 24 hours. My calling all possible supported living programs in our state began about a year and a half ago. With the dual diagnosis of deafness and mental illness, no program would accept her. Many of the programs who may have had prior experience in working with her, never even returned my calls.

After working closely with the Department of Developmental Disabilities, whose frustration and efforts equaled mine; they were able to establish a placement for her that has far surpassed our expectations through a program used to dealing with adults with more severe developmental disabilities. They had no prior experience with a young adult with both of Marie’s difficulties, but once they learned there was someone in such need, they stepped right up and took on the challenge.

Marie now lives in a cute, little house on a nice residential street. As described by those on the show “House Hunters”, this one would be described at “Retro”, with bright yellow tile, a front door carved with circles, and a front porch with wrought iron table and chairs. Neighbors bring over cookies and wave to each other on the street. There are three bedrooms in the house, and she is hoping that a housemate will join her soon. She insists that her house buddy like to watch scary movies, (VERY scary movies,) and, most of all, must not be allergic to pets. Marie has a guinea pig that is usually perched on her chest with both of her hands gently stroking the lucky animal, a calming activity that works for both her and Oreo, who is black with a white center, of course.

Marie is thrilled to be able to go shopping for food she likes, not necessarily the food I have cooked for her. She is no longer in school, so work activities will happily replace the classes with which she used to have such frustration. She has directly chosen the things that she would like to do during the day, throwing out suggestions I would have thought unobtainable.

Marie has always loved to ride horses but gets frustrated that when we go, her horse needs to be tethered to another due to her deafness. She recently began an activity at a horse farm that facilitates riding for children with disabilities. For such children, the riding is therapeutic, but the horse walks slowly. Marie’s job is going to be to trot the horses at the end of the day because the horses themselves get bored walking slowly. What better job than that for someone who loves to ride horses?

Marie’s penchant for all animals has earned her a spot working with “disenfranchised” cats and kittens, that is, homeless felines. She will clean the cages, feed them, and then “show them off” like Vanna White highlights the letters on “Wheel of Fortune”. Oreo will be jealous, I’m sure, so Marie will have to wash the cat scent off before she returns home.

At this point in her life, Marie is feeling very good about herself and her care for others. She has signed up for a Meals on Wheels route, and all of those hugs she didn’t give in her early years will undoubtedly be dispensed ten times over among her lunch recipients.

As a mom with a daughter for whom life experiences didn’t start out well, I am so thrilled that in her adult life she will be doing the things she enjoys with people who will support, encourage and appreciate her. What more could any parent ask for?

 

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To read our story raising Marie and her four siblings, please purchase my book, The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane. It is on sale on Amazon and Barnes and Noble. Thank you for your support!

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Try a Sip of Greasy Wine

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My usual low level of frustration has been tested this week. Anyone who has an adult child with disabilities can understand fully the parenting that goes beyond the age of eighteen. Steven, my wildly impulsive, curly haired son, who was born addicted to heroin and cocaine to a mom with severe mental health issues, has a brain that does not function quite right, especially in the responsibility and common sense areas. His highly valued license was suspended last year for failure to pay for a ticket. After many prompts, in January I led him to the Licensing Board to pay the fine. He then had to take this paper to the DMV to get his license reinstated. He went at least eight times, both when I took him and when he ventured into the crowds himself alone. The fact is, he does not have the ability to sit still or wait for more than 10 minutes before getting agitated, so he had been unable to get his license back. The DMV has wonderful accommodations for individuals with physical disabilities, but wouldn’t it be great if there were a quicker line for those with severe attention deficit hyperactivity disorder. The only incentive for Steven to delve back into the commotion of DMV came when a police officer pulled him over and dispensed a ticket for driving without a license. Off he went back there, late in the day, to get his license. (He was quite excited that he only had to wait 30 minutes, but because the facility was closing shortly, the workers were all working at warp speed to be able to get out of work on time.)   The most frustrating news came in the mail today; a notice that his license is suspended again because he did not pay the most recent ticket…

My son, Angel, seems to be a very good driver, although he is quite fussy about needing to have his car in perfect working and cosmetic shape. Two years ago, he had borrowed my car and, when stopped at a red light, was hit so hard from the back that he was accordianed right into the car in front of him. His injuries were mostly mental, with our insurance having to pay for the damage to the car in front of him, (is THAT fair?) along with the newly instilled fear that he could be killed at any time. My injury was that the insurance only paid for a fraction of what we had paid for this older car, certainly not enough to purchase a reliable car again. It was so frustrating trying to make the best purchase for a minimal amount of money!

About a year later, when he again borrowed my elderly car, the engine literally blew up on him. Again, not his fault. Again, insurance paid a fraction of what we had paid for the car. We searched and searched and found a very old, one owner who only drove it to the church, mint condition car with all of the bells and whistles. (Heated seats! Sunroof! Stereo surround sound!) It was a miracle to be able to purchase such an awesome car for the amount of money we had, and I had truly enjoyed driving it. I say “had enjoyed” because this car, also, has become one of Angel’s victims. This week, while turning with a green light, another car ran a red light and “T-boned” him. He does have some injuries, especially emotional due to this most recent brush with death. My injury is the loss of this “perfect for the money” dream car, the third one in three years. My driveway is again empty.

So last night, trying to squelch my frustration, hubby and I had wine with dinner. I’m not a big drinker, but somehow the occasion called for it. Sitting back sipping it daintily, the ice chips tinkled on my lips. Half of the glass was gone before I noticed an odd, greasy taste. Looking at the ice, what looked like blobs of butter clung to them. Butter? How could that have happened? Hubby’s eyes shot open wide and he ran to the freezer. Because we had corn on the cob the night before, he had put the butter in the freezer, a technique to keep the butter from melting while putting it on the cob. Unfortunately, he had left the butter in the ice tray where it sunk to the bottom of the ice and was ground up to make the greasy ice chips in my wine. I sighed; couldn’t make this stuff up!

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.

Literally, God Will Provide…

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In my years on earth, miracles have happened that have strengthened my belief in God. Whether it be my daughter, Dinora, gaining hearing after being deaf, or the provision of a wildly disputed passport showing up in our mailbox just in time for her travel to her birth country when she was a teen, I have been blessed. But I’ve never been more surprised about God’s ability to provide until today…

We have to share our cars now that Angel is driving, and today was my turn to take the big family van. Being short on money this week, I fished out a one dollar bill that still clung to life in the bottom of my purse. Victory! When stopping for gas, I could go into the convenience store to get a bi-i-i-i-i-ig drink of Diet Coke to last me the day! Once in the store, I put my la-a-a-a-a-a-a-arge cup under the spigot and filled it to the brim, excited at the prospect of getting such a delight for only 89 cents! Looking up, I suddenly noticed that this was not an all sizes pay same price kind of store, and that a large soda was $1.49! My heart skipped a little bit when I realized I was going to have to go out to the van to dig up some loose change in the carpeting or under the seats to pay for the soda. Just as I was putting the lid on the cup, the store owner struck up a conversation. “That’s a big van for you to drive,” he said. “I have five kiddos and our family all has to fit,” I answered. “Yeh,” he said, “But it must be really difficult to drive that thing.” I just laughed and shrugged. I was just about to tell him that I was going to have to leave my drink on the counter to run out to get more money (hoping to dig up another 3 quarters,) when he said suddenly, unaware of my financial situation, “God bless you! The drink is on me.” I smiled and said an enthusiastic “Thank you!” He could not have understood how much this gesture was seen as a blessing, (especially because when I got back to the car I could only find six pennies, two dimes and a nickel.) God provided a Diet Coke so large that I had enough to drink all day, and I still had a dollar left in my pocket! Maybe no big deal in the scheme of things, but, to me, it was a personal affirmation that God DOES provide!

Similarly, another provision surprised me today. Having recently saved up enough to buy a flat screen television to put on the wall, we have been remodeling our living room. I washed and hemmed some new curtains and shampooed the rug. Without the large, old television cabinet, the room looked much cleaner and brighter EXCEPT for our 25 year old couch that displeasingly hugged the wall, looking like an old walrus, slumpy and bedraggled. (The couch was so old that I could not count the number of stains, or the times the skirt had been super glued back on because one child or another had ripped it off in a PTSD or dissociative fit.) I would buy a few throw pillows to brighten it up, I thought to myself, just as my phone rang. It was a neighbor, one I always wave to but don’t talk to too often. They were getting new furniture, she said, did I want their leather, L shaped couch? It was still in good shape, she explained, and they paid $6,000 for it, but they were looking to redecorate. DID I WANT IT???? DOES POPCORN POP? DO FERRIS WHEELS TURN? Yes, yes YES! Of course I wanted it! What an unexpected surprise! How wonderful is God, who provides even when we don’t ask! That is truly a Being that sees inside our hearts.

As The Sun Set in the Warm September Sky

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It was 95 degrees today! On the 6th of September! My daughter, Marie, and I spent most of the day at the movies where it was cool and comfy, munching on buttered popcorn and drinking Diet Coke. Coming home at 5:30 to stifling heat, we decided to take a swim in the pond behind our house. I had not been swimming in the lake in years. (My children, now teenagers and young adults, had lost interest in beach activities, onto other teenage endeavors that don’t involve wet bathing suits, towels, and sand between their toes.) As I stepped into the water, it was refreshingly wonderful! With Marie in tow, we each sat in a tube and paddled out to the middle of the lake. The cool water was the perfect solution for the muggy hot weather. We chatted for a while, (in sign language,) and Marie told me of the importance of wearing socks with her sneakers or her feet stink and people don’t want to come near her. She told me she enjoyed woodworking class which she had just begun, and she planned to build a house with what she was learning. We talked about teachers and boys and what her hopes and dreams are for when she “was older.” (She wants to work petting dogs and cats.)
As the conversation wore down, we both relaxed in the water, just floating and enjoying the moment. Marie took my hand in hers, a move she would have never done all those years ago when she came to live with us and would have screamed if I even touched her. I felt we were bonding anew. She shared her dreams, and now she was sharing her love. We floated in silence, watching the seagulls swoop down to get fish, and the geese fighting with them for air space. It seemed they were playing a follow the leader game, flying side by side, and then swooping into the water, geese honks and seagull squawks. We watched as the turtles poked their heads above the water. When she was younger, Marie would have taken off to joyfully capture them. But today she just floated in silence with me. More mature. More content with herself.
The time seemed timeless; we could float there all day, water lapping at our legs. But the setting sun belied the late time of day. Above the trees beautiful colors arched; pinks, oranges, purples. It was peaceful. It was relaxing. It was joyful. As we sat there in the water on our tubes holding hands…

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If you are interested in learning more about my family, here is 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

“God Don’t Make Junk”

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This used to be my mom’s favorite saying. She believed it all of her life, but never as much as she did after the birth of my brother, Curtis. When she was pregnant with him, she was unknowingly exposed to German Measles, thus affecting him with Rubella Syndrome.

Curtis was unfortunate to acquire all of the accompanying diagnosis; he had a severe hearing impairment, congenital heart disease, an intellectual disability, an odd head shape (like a smooshed pear,) a cleft lip and palate, autism and was legally blind with crossed eyes that wiggled back and forth. (Additionally, when he was a teen, he developed schizophrenia, but that’s for another story…)

Because I was only 4 when he was born, I thought he was the cutest thing in the world! He was my BROTHER, after all. I delighted in feeding him formula through an eye dropper, trying to quell his kitten like hunger cries. I loved to rock him in the rocking chair, all bundled up and warm. He was a delight to me!

Curtis’s life in our family was as amazing as mine. Loving, adventurous, interesting, and accepting. Anywhere we went, I would explain to quizzical stares that he was born like that and he might look different, but inside he was the same as everyone else. In fact, he had an amazing sense of humor and would laugh at anything! He loved to eat peaches and watch Sesame Street. As I extoled my brother’s virtues, I could see their stares soften with understanding and acceptance.

The “gawking” role was reversed when I was a parent, and this moment is etched into my mind. Francis and I were at the zoo. He must have been about four years old because I remember pushing his sister, Dinora, in a stroller. Nearing a pen of vastly ugly pigs snorting mud, Francis exclaimed, “Look, mom! One of the animals got out of the cage.” I looked over and saw a horrified mother with a toddler in a stroller. A disfigured toddler, with a gaping mouth like Curtis used to have. And the child was snorting bubbles and drool. Taken aback and horrified by what Francis said, I took his hand and we walked over to the stroller. I smiled at the mom and told her what beautiful eyes her child had! I asked her if it would be okay if we touched him, and Francis and I leaned over and gently rubbed the child’s chubby little hands, which opened and closed in excitement. “He really seems to be enjoying the zoo!” I said, as we parted, smiling knowing little smiles at each other.

I then took Francis aside and explained that God makes all types of children, and “God don’t make junk!” His observational comment was an innocent one, (especially because he is legally blind,) but it provided an opportunity for a valuable lesson.

Every mother wants to be proud of her child, and to have others share in her positive feelings. Every child is a joy! Imagine yourself in the mother of a disabled child’s shoes. Have empathy for that mom. Join in her admiration of her child, and maybe you will also internalize the concept that “God don’t make junk!”

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For more stories about Curtis’ childhood and our adventurous 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

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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