Archive for the ‘visually impaired’ Category

Mothers, Help Your Sons Grow Up to be Fathers…

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My oldest son, Francis, grew up amongst a caravan of foster brothers and sisters. Specializing in newborns and infants who had been affected by prenatal drug exposure and addiction, our family was usually comprised of my husband and myself, Francis, his sister, Dinora, who had been adopted from Guatemala, and one or two foster babies. Despite the fact that Francis is severely visually impaired, he played an active role in child care, frequently holding a little one, feeding a bottle and changing diapers. When going to the mall, he and his sister would proudly push the double stroller. (With the 2 of them, he could be a pusher without having to see where he was going…) Throughout his childhood, sixteen foster babies lived with us, and caring for them was just a fact of life.

Francis is now an adult with a Ph. D. from Cambridge, a well paying dream job, a wonderful wife and a cozy home complete with a grill for grilling steaks and a lawn to mow. And, as of three weeks ago, a newborn baby. My week spent with his little family renewed my faith in the power of what is learned in childhood. Without even knowing it, I had trained Francis how to be a good father! He bundles his little girl up in a baby blanket, like I had bundled up those babies who were going through withdrawal. Newborns like being in a tidy bundle because they arrive with strong startle reflexes and without much control of their arms and legs. By pulling her arms and legs in close and securely wrapping a blanket around her little body, baby India can feel safe and secure. When she is awake and alert, Francis rocks her and sings songs to her, songs that he heard me sing so many years ago: “Itsy Bitsy Spider”, “Hush Little Baby,” and “The Wheels on the Bus Go Round and Round”. Even though she couldn’t possibly know the songs, the sound of his voice quiets her, and these songs are easy to sing. When he is expertly changing her diaper, he plays “This Little Piggy” with her toes, gently pulling her feet to his mouth to kiss. He exaggerates the “wee wee wee home” by tracing his finger from her toes to her chin, tickling her slightly before kissing her forehead. And while she sits in his arms on the couch, ready for bed, he reads her books with very large print; “Goodnight Moon”, and “Five Little Monkeys Jumping on the Bed”.

On the evening before I left to fly home, he looked over at me and thanked me for giving him the opportunity to practice on all those babies years ago. All of his friends are having babies now, he said, and they are all in a tizzy. Because of the practice HE had, he is a confident parent and not at all nervous with India. I realized that by being a foster parent to infants, I was not only caring for little ones, but also nurturing parenting skills in my oldest sons, skills that will ensure he will be an awesome father!

I have repeated this post from last year. His adorable baby is now a year old, and his father’s day skills have continued to flourish!

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If you are interested in reading other stories about Francis, please purchase my book on Amazon.

A Fluffy, Cold Piece of Cotton

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I had a lovely school vacation adventure by taking 20 kiddos who are blind to New Hampshire. What a lot of work, you say???? The work doesn’t compare to the joy that fills my heart as I watch these young children socialize and help each other, several of whom were away from home for the first time, many of whom had never stayed in a hotel, and several of whom had never swum in an indoor swimming pool, (or swim anywhere at all for that fact.) I want to share some heartwarming moments to possibly warm your own hearts as well during this cold, cold winter.

* A six year old Cambodian girl who had never been away from home before and whose mom had not packed properly for her, was wearing a donated bathing suit so large it had to be tied onto her so as to cover the “important parts”. As she held onto the railing of the pool and took that first step into the water, her serious face started to smile. On the second step, the smile grew larger, and on the third step, even larger still. By the time she was in the pool, she had a grin from ear to ear, and was giggling excitedly. She bounced up and down in the water, hearing it splash all around her, laughing louder still! She giggled throughout her first swim, and that made my heart giggle.

* A fourteen year old girl took the initiative to help a seven year old girl, leading her to the activities, bathroom, dining table and so forth, with both of them using their white canes. In school, this teen is often seen as “helpless” or to be pitied. As she conscientiously stuck by the side of the younger girl, choosing to do the activities the younger girl wanted to do instead of more selfishly choosing teen activities, her demonstration of compassion and leadership made her a great role model, not to be pitied but to be admired. Her pride made my heart proud.

* Three young girls, bundled up and huddled together in a single, large Superman sled, coast down the snowy hill, twisting and twirling, their laughter piercing the air with screeches similar to those made when going on a roller coaster. Their request for “more, more, more” despite the frigid temperatures belies their joy in sledding, something none of them had done before. Their excitement filled my heart with excitement.

* A young boy, used to having his food cut up by his mom, practiced using a knife on his chicken parmesan, sawing the knife back and forth to release each savory piece, then stabbing it with a fork and bringing it to his mouth with a look of satisfaction. The young boy next to him, who is used to eating EVERYTHING with his fingers, (he’s BLIND, you know….he can’t possibly use utensils are his parent’s thoughts,) was taught to use a piece of bread to coax his food onto a fork by the teen sitting next to him. At first, much of the food didn’t reach his mouth, but he kept trying, urged on by his seat mate. By the end of the meal, he had independently filled his tummy, filling my own heart with his feeling of success.

* All of the kiddos were up on the dance floor, bopping and bouncing to songs such as YMCA, The Chicken Dance, Cotton-Eyed Joe, the Hokey Pokey, the Macarena, The Hustle, Stomp and the Cha Cha Slide. Line dances are perfect for them, and they teach each other the steps. No one is left out and everyone has great fun, wildly swinging their arms, kicking their legs, and sashaying their hair. Watching this group of kids dance, almost in unison, with smiles and giggles and laughter, fills my heart with beautiful music.

And one last little moment: it had started to snow, big, fat flakes of snow, some an inch around and as fluffy as cotton balls. One child started the movement by looking up into the sky with his arms wide and his mouth open, catching the flakes on his tongue. With excitement, the other children follow, arms out, mouths open, allowing the fluffy pieces to rest on their tongues and drop down onto their faces. They were amazed!! So THAT was what a snowflake looked like! At home, they usually rush through the snow, heads down, but on this date they were welcoming the experience. They didn’t need to see the snow to enjoy it, they could feel its beauty and how the warmth of their bodies melted the fragile snowflakes into little piles of water. How amazing! How joyful! What an eye opening experience!

How NOT to Raise a Child with a Disability

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When your child is a toddler, focus on all the things he can’t do. He’s not walking as soon as other children. He’s not talking as good as other children. It is embarrassing to take him out in public because everyone comments on his looks. Blame your spouse for his disability. Or, equally worse, blame God. Whey has He forsaken you? Why has He saddled you with this tremendous burden? Spend your child’s infant and toddler years lamenting the sadness, disappointment and loss.

As your child gets older and goes to school, always blame the teacher or the principal if he can’t do something. After all, it MUST be their fault. They are discriminating against your child if they try to make him behave or actually complete his school project. He has a disability! Doesn’t that come with the right not to have to do homework or obey the class rules?

Try to force the sports teams to let your son play, and they will. But your son cannot play soccer/baseball/basketball as well as the other children and he is humiliated by his poor skills and the disappointment from the other children when their team loses. Make sure to yell at your child for his poor performance. After all, if he didn’t have a disability, he would have made a great soccer/baseball/basketball player, and it is a horrible loss for you to admit that your son is a failure.

Argue with your partner/spouse over your son. You don’t both agree on the best style of parenting, so each do your own thing and teach your child that he is a constant source of distress between the two of you. Possibly get divorced. And blame your son. If he hadn’t been born, you would have had nothing to argue about.

You see your son as worthless…he can’t play sports, he gets in trouble all of the time in school, (as you have been his best advocate that he doesn’t have to follow the rules because he has a disability,) and he has minimal social skills. Do not be surprised when he turns to drugs.

He assumed that he was SUCH a disappointment that you would be better off without him. Do not be surprised when he takes his own life…

This rant follows a recent suicide of one of the students who is visually impaired with whom I worked. Like all adults who were a part of his life, I wonder where I was to blame. I tried in vain to impart my enthusiasm for a bright future for him. I tried in vain to make the parents realize that by setting their child apart they were denying their child an equal part in society. I tried in vain to tell the parents that their child may not be good at basketball, but he could swim spectacularly! Maybe he couldn’t play soccer, but give him a bowling ball, a bowling ramp and a lane of pins and he could get a strike two times out of four. He had such a way with younger children that I imagined him a teacher one day. But his parents did not see it. They only saw their own disappointment. Their own embarrassment at having a child who looked different. Their own anger at each other for the having “caused” this disability. They only saw their own feelings and never once stopped to think about how this was affecting their child. Their child who would never become the teacher I envisioned.

My suggestion to parents of children with disabilities is this: your child is a wonderful creation who, for whatever reason, was born with a disability. Rejoice in your child! Look for the things he CAN do, and incorporate them into your daily life. Plan for his education in a realistic, non-judgmental manner. Sure the teachers may screw up once in a while, but haven’t you also, at one time or another, misjudged your child? Try to keep the peace at school. You only meet with the teacher once in a while, your child has to go to school every day. If you and your spouse disagree over parenting, see a counselor who can help you work together. Most of all, find something in which your child excels and enjoys, and fly with it! Everyone wants to have success in life, and your child is no different. Whose to say one type of success if more important than another?

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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

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…

Is There a Cupboard for Cans of Food?

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Actual conversation overheard while I was driving children who are blind to activities during the summer program with which I have been working:

Her:   “What street do you live on?”

Him:  “Main Street”, (which is 5 miles long.)

Her:  “What color is your house?”

Him:  “Yellow”

Her:  “YELLOW?!?  I used to live on Main Street in a yellow house.”

Him:  “Wow!  Maybe it is the same one! Did it have two bedrooms upstairs and one bedroom downstairs right next to the bathroom?”

Her:  “YES!  That sounds just like the house I used to live in! Does it have a driveway on the side of the house with bushes by the front steps?”

Him:  “YES!  How about a dining room where it can fit a table that seats ten people?”

Her:  “Oh, my family used to get all together there on Thanksgiving.”

Him:  “MY family gets together there for Thanksgiving!  Did your bedroom have a closet door that got stuck?”

Her:  “YES!  That was my closet door!”

Him:  “And how about a creepy basement”?”

Her:  “YES! YES! I was always afraid to go into the basement.  How about…does it have a  cupboard in the kitchen where you could keep cans of food?”

Him:  “OH MY WORD!  YES!  That is too much of a coincidence!  I guess I really AM living in the same house you used to live in!”

Her:  That is sooooooo amazing!”

Him:  “Isn’t it!!!!!”

And while they were talking, I drove by at least another ten yellow houses on main street.  I wonder if they all have cupboards in the kitchen in which to keep canned foods???

But She was Just Talking to Her!!

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

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

On the last night of this program. Marie was seated in the booth at the restaurant with two of the girls and their staff.  One of the girls all of a sudden started waving her hands wildly in the air, not just once, but she kept going! Prone to seizures, the medic ran over and asked her if she was okay.  Of COURSE she was okay, she said, she was just TALKING to Marie!!  The laughter started at their table and  soon circled around the room as everyone realized what she had said…she was signing to her, of course!!!!

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To read more about our life, here is a link to my book:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

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

He Ain’t Heavy, He’s my Brother

I led a very untraditional lifestyle when I was growing up.  My father, whom I later realized was schizophrenic, had the wanderlust to travel, which our family did for about 6 months of the year. He would remove me out of school and we would take off for various areas of the country, living in our Volkswagen van. ( Although I am sure that today’s public education system would not allow it, somehow I think my father would have taken me out anyway.)

It was quite an adventure for a child like me.  I have a vivid memory of cracking eggs in a big, black, iron frying pan over a campfire in the Badlands in South Dakota.  The rocks the pan was on were not sturdy, and the pan fell sideways with the eggs slowly leaking out onto the pine needles on the ground.  (Clumsy then…still clumsy.) I remember traveling in southern Georgia, driving for miles watching red clay cover everything…the houses, the cars, and even the clothes hanging on the lines.  It was at the beginning of the civil rights movement, and I was uneducated in this area, (probably because I didn’t go to school!) The whole concept of a bathroom for “whites only” was a shock to me.  Did that mean that only people wearing white clothes could use it?  (I’m picturing nurses, dentists, pharmacists…)  I couldn’t use it because I had on my only pair of pants, jeans, and a multi-colored t-shirt. But I had to go to the bathroom baaaaad, where would I go?  Behind the bushes? How degrading!  My misunderstanding of this concept is now a slight reminder of what it felt like be African American in the 60’s. I also have the memory of  a bear at Yellowstone Park coming onto our campsite to eat our dinner as we all huddled in the car. My brother, Curtis, was upset because he had left a package of Cracker Jacks on the picnic table.  We had to restrain him from leaping out of the car to get it.  Afterwards, I was not so keen to sit by the campfire…

But most of all, I remember my constant companion; Curtis.  He was four years younger than I was, and he had been born with Rubella Syndrome; developmentally delayed, cleft palate, legally blind, and severely hearing impaired.  He was my buddy.  Because my dad was extremely frugal, (ie obsessive compulsive disorder frugal,) I did not have many toys to play with.  So, in addition to reading a lot, I played in our surroundings with my brother.  I have a memory of  sitting by a stream, sun shining down on the water through the leaves on the trees. Curtis was happily splashing about in the shallow water.  I was looking for rocks that somewhat resembled people.  (They were no Barbie dolls, but some kind of looked like Alfred Hitchcock and Potato Head.) All of a sudden I heard a whoooooosh!  Curtis had ventured too far into the water and the current started to carry him downstream!  Fortunately, I had long, slim legs (in those days,) and with a few strides, I picked him up by the back of his pants. He was laughing heartily.  To him it was a real adventure.  Like the poor person’s substitute for a ride at Disneyland!

We actually had a lovely childhood together. I had to carry him everywhere because he could not walk sturdily.  Carrying him was just a natural way of life for me.  I don’t know why, but I never thought to be embarrassed by him, (although his screeching and attempt at speech WAS pretty scary).  I never ever thought of him as a burden.  He was just my buddy, Curtis.

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My parents rarely took pictures.  (The money thing again…) But I do remember ONE picture.  It was a picture of me and Curtis, standing in front of Mount Rushmore.  I was characteristically giving him a piggy back ride.  The photo shows Curtis, looking over my shoulder, eyes squinted shut by the glare of the sun.  I was wearing a stupid, treasured, red velvet derby hat, (you know, like jockeys wear.) As the dead presidents loomed behind us, I gave my characteristically stupid, toothy grin, (like all children do when their parents ask them to smile.) And on that day, I first heard the song from Neil Diamond which fit my sentiments exactly: “He Ain’t Heavy, He’s My Brother”.  It was a powerful moment to think that someone had put into words what my life was like.

I was so very lucky to have been raised the way I was because it formed my personality, my temperament, and my compassion for others. I personally cannot take credit for the way I live now, fostering and adopting children. I am not selfless, nor amazing, nor wonderful, nor any of the other adjectives readers have used to describe me. I am simply living my life the way I was raised and it is a wonderful life!

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

 

He Ain’t Heavy, He’s My Brother Lyrics

The road is long

With many a winding turn

That leads us to who knows where

Who knows where

But I’m strong

Strong enough to carry him

He ain’t heavy,he’s my brother

So on we go

His welfare is of my concern

No burden is he to bear

We’ll get there

For I know

He would not encumber me

He ain’t heavy, he’s my brother

If I’m laden at all

I’m laden with sadness

That everyone’s heart

Isn’t filled with the gladness

Of love for one another

It’s a long, long road

From which there is no return

While we’re on the way to there

Why not share

And the load

Doesn’t weigh me down at all

He ain’t heavy he’s my brother

He’s my brother

He ain’t heavy, he’s my brother

He ain’t heavy, he’s my brother

written by Bobby Scott and Bob Russell

performed by Neil Diamond in 1970

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

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