‘Twas Once a Child

 

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!

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.

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/

I Used to Think People Who Celebrated Their 25 Wedding Anniversary were Old…I was wrong!

When I was young, I thought couple who celebrated their 25th wedding anniversaries were old.  I learned when I celebrated mine, that they were really quite  young.  I was astonished I ever thought differently.  How could I EVER have thought that?  I must have needed glasses at the time.

Being married more than 25 years to my “first love” has been a blessing.  He was the cook and I was the waitress at a restaurant I worked in while in college.  Here is some advice for anyone reading who is not yet married:  LOOK FOR SOMEONE WHO LIKES TO COOK.  I have been so fortunate because HE does all of the grocery shopping and cooking.  Really.  I come home almost every day to a delightfully cooked meal, complete with salad, meat, veggies, and an tall iced glass of Diet Coke.  He used to make desserts, too, until we both started to expand our waists…

For Thanksgiving, we have a great family tradition.  I and ten others in my immediate family, (children, their significant others, and a grandchild) go to the movies. Yes, the movies!  We saw “The Life of Pi” because several of my children are fascinated with animals. It was about an Indian boy shipwrecked with some animals from his family zoo. Everyone seemed to enjoy it because it had something for everyone.  Brooding, spiritual, philosophical content along with a cheetah jumping on animals and killing them for food.  The food chain.  Done tastefully with no blood or other sites where one has to turn their head, shut their eyes and go “EWWWWWWW”.  We enjoyed buckets of drenched in fake butter popcorn and ICEEs.  Great day at the movies for us. Great day in the kitchen for my husband, who loves to cook but likes to have a quiet kitchen, something which is rarely available to him.

We came home from the movies and VOILA!  Turkey and trimmings are on the neatly set table with the obligatory child made Turkey centerpiece.  All 12 of us sat down and had an extremely delicious dinner. My husband basked in the glory.  There is nothing better than doing something you love and getting praise for it.

I was proud of my children who “signed” (American Sign Language) for Marie, who is deaf. We signed the simple Thanksgiving prayer,and the conversations began. As a mother, there is no sweeter sight than all of my family members being happy and sharing conversation with Marie, who smiled and laughed and participated.  I think I have raised them right. I remember that every Thanksgiving and I my little heart smiles inside me.

 

 

 

In case readers may not know, my book was reviewed by Readers Digest:

Nov 02, 2012 11:04 AM EDT

What to Read After a Hurricane

by Dawn Raffel

Shortly before Hurricane Sandy came to my town, flooding my house and knocking out the power (which is still out), I had the good fortune to download The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane by Linda Petersen.

Her story begins not with her children but with her own childhood spent traveling the country in the backseat of her parents’ car (her perpetually restless dad had post-traumatic stress disorder from  WWII), often with very little money and few provisions. Where someone else might have seen deprivation and isolation, Petersen viewed her unusual childhood with a sense of wonder and gratitude. After marrying young and giving birth to a son who was legally blind (and who went on to earn a PhD on full scholarship), Petersen and her husband adopted four more special needs children and fostered many others.

Her honesty, wit, and terrific storytelling make this a book you want to read rather than one you feel you should read. So there I was, swiping pages on an iPad in the dark in a blackout… I couldn’t have picked a better book for putting it all in perspective.

http://www.rd.com/recommends/what-to-read-after-a-hurricane/

An Active Life with Limited Vision

Francis, who is severely visually impaired enough to be considered legally blind, was skilled enough that he was able to attend a mainstream kindergarten.  He needed some modifications, including large print materials.  He adjusted well to the class, but one week came home and told me that they had a guest speaker come to their classroom.  An exterminator came to the classroom to tell them about termites and such.  He was clearly shaken by the presentation, and for the next several nights he had nightmares, couldn’t sleep, and kept the light on in his room.

He was petrified of termites!  Trying to calm him down, I said “Why are you afraid of teeny tiny termites?”  “TINY???” he cried, ‘They’re HUGE!”  Only people who have driven through Providence, Rhode Island and have seen the 30 foot long, 10 foot tall “Big Blue Bug” as an advertisement for an exterminator which sits proudly right next to Route 95 would understand why he thought termites were huge.  After all, he was too visually impaired to see a real termite, and thought that all termites were that big! No wonder he was so frightened!  We’ve had a good laugh over that story for years!

Another interesting story was how he chose his friends.  With limited vision, he could only make out vague details of the other children.   Yet, he had one good friend named Eddie.  He and Eddie always hung out together.  One day I brought him to school late, and as I looked over the sea of Caucasian, blonde haired little five year olds, I heard Francis say “There’s Eddie” as he happily jumped through the crowd to sit next to the only African American boy in the class.  Real easy to spot!

As Francis got older, he wanted to participate in sports.  He took up wrestling through the Police Athletic League where his vision would not impair his performance.  I, however, had never been to a wrestling match before.  At his first match, he was wrestling with another boy his size and he reached over while the other boy supposedly made an “illegal move”.  Francis’ arm cracked the boy in the nose, and soon there was blood everywhere.  I’m screaming.  The kid with an obviously broken nose is screaming.  And Francis was screaming because he had won the match!  That was his one and only wrestling match. Okay, so blame me for being an overprotective mom, but the sight of blood tends to sour me on a sport.

After that, Francis took up swimming, a sport he excelled at, and one in which he could not get hurt or hurt anyone else.  He remained in this sport for many years, and won several honors for his fast swimming.  It gave him a chance to be a member of team and compete with other people where vision was not an issue.

Francis also became an excellent skier, skiing by following closely in the tracks of a lead skier. He went to winter camps in Colorado run by the Christian Braille Foundation from the age of 14 years old, flying alone across the country to join other skiers with vision impairments.  By the time he was a young adult, he was easily skiing black diamond slopes in Maine and New Hampshire. much to my chagrin.  I was petrified he was going to ski into a tree!  (This was around the time one of the Kennedy’s died by running into a tree.) In his early twenties, while Francis was attending college in Cambridge, England, he made several forays skiing in the Alps.  He sent me a gorgeous picture of him at the top of the mountain, the sunshine on his back, his dark glasses gleaming in the sun with a big smile on his face.  He signed the picture “Look, Ma!  No trees!”  because skiing in the Alps is done above the tree line.  I felt much relieved.  What a great place to ski!  Until I learned from someone that there are not TREES on the Alps, but there are plenty of AVALANCHES!

While in Cambridge, Francis joined a punting team. His team was very successful because he was the lead “punter”.  (I don’t know what it is called…) He would stand at the front of the long, flat boat with a long pole.  Because of the fact he was 6 foot 4 inches, his pole would go deeply into the water and propel the boat forward.  He was also very agile and could do this very fast. His team members would direct him on which way to steer, and they became a champion team!

Despite all of my fears and worries as a parent, Francis has successfully made it to adulthood and continues to try new sports, surfing in Hawaii, wind surfing in California,  and, , jogging in marathons.  He even obtained a license to captain his own sailboat crew.  It just demonstrates that being legally blind does not have to hamper your activities, they just are done in different ways!

A Week At Camp, the Blind Leading the Blind

I have just unpacked upteen boxes and suitcases from a week of running a summer camp for children who are blind.  Lest you think this past week was a chore, it was not. It was a week of pure joy.  A week of watching months of work come to fruition. A week of watching young souls meet new friends, try new things, and, in some cases, mature beyond belief. Children whose parents thought they would be homesick and crying to come home at night, instead spent the night playing games with other children.  Sure, the children are blind and severely visually impaired, but they are still children.  The lure of learning how to play blackjack on Braille cards, or chess on an adapted chessboard, or Connect Four, Braille Uno, or Monopoly in large print and Braille, won out over going home to their lonesome bedrooms at home.  Who can argue with fun?

This was my 23rd year doing the camp. I started it when my son, Francis, was five years old.  In our state, as in most others, children who are blind or visually impaired go to their neighborhood public schools with accommodations made so they can be educated with their fully sighted peers.  It is a wonderful concept, except for the fact that the child may often feel alone.  I started this camp so the children who are blind can get together with other children with the same disability and learn that they are not alone.  There are many other children just like them!

We have been fortunate to rent a wheelchair accessible retreat center. (Some children who are blind are also mobility impaired.)  Although I call it “camp”, it has bedrooms with 4 beds, (linens and all,) each with its own bathroom (with hot water!)  There is air conditioning, carpeted floors, and a great room where all meals are cooked by a full kitchen staff.  There is also plenty of room for camp activities.  I know it does not sound like your typical “camp”, but it is as close to nature as this little old social worker cares to get.

The children range in age from six to eighteen, although theoretically the campers top age is 13.  Any camper who has shown active participation in the camp, we hire as a junior counselor when they reach the age of 14. I learned this “technique” to deal with the teenagers years ago when we found ourselves with a large group of teen campers who rebelled against the camp activities and wanted to just hang out.  They would sit back and not want to participate in the dance, the games, the swimming and so forth, effectively using the time just to socialize.  I am not saying that socializing is a bad thing; in fact it is a much needed activity for these teens, but just not the purpose of our camp. So, we hire them to work with the younger children.  Our state Department of Vocational Rehabilitation actually pays us to use this experience as a job training opportunity.  For those counselors who are totally blind, we provide a sighted guide for them, but they are expected to do the actual work.  Is there anything more valuable than seeing a fifteen year old girl, totally blind from birth, working with a six year old girl who is also totally blind? The campers learn that despite their disability, they have valuable skills, and they learn these skills from the junior counselors.  We have had many junior counselors go on to be head counselors, and also onto college into teaching and human service positions based on their initial experience at camp.  (We also have one young man who has become a certified EMT after working at our camp as our Medic for 8 years.) Because these young people are working at camp, they are learning valuable work skills and building a resume, and I have been asked to write many recommendations for these hard working, eager to learn, teenagers.

The activities at the camp itself are modified for children with vision impairments.  Besides the games mentioned previously, we have many group activities.  My favorites are our “Olympic” events.  The groups generally include one head counselor, one junior counselor and four campers, make up the “Olympic teams”.  We have many activities over the week that enhance the group dynamic, but also teach the children that winning isn’t everything.  While the teams make up the audience, one team performs the event while the others cheer them on.  It isn’t winning or losing that is the goal; it is the camaraderie, good sportsmanship, and support of others that counts.  Events this year included the ball in the basket toss.  A beeper is put in a laundry basket, and teams are asked to throw the balls in.  The team that gets the most balls in wins.  Easy enough one would think.  But to make it a little bit harder, and because some of the children have some limited vision, we blindfold everyone. Not quite so easy.  We also had a shooting event.  Water guns.  Turkey roaster pan hanging from a tree. Me banging on the pan so they can tell where the pan is located.  Lots of fun, but the most fun was seeing where on my body they would shoot me when they missed the turkey pan! Unfortunately, they did not get any extra points for shooting the camp director!  Another very humorous event was a twist on the old standby game…the dressing game.  In a laundry basket there are a pair of pants, a man’s long sleeve dress shirt, a tie and a hot.  The “athlete” is supposed to put the clothes on and race down to the person at the other end of the line, who is wildly calling their name so they can find them.  Getting to the person is the easy part, putting the clothes on, blindfolded, is the hard part, especially when the person before you has left one of the sleeves in the shirt inside out.  Or trying to put the tie on after the hat was on their head.  Or holding up the ill fitting pants while they ran. In this game, none of the audience could cheer the athlete on because they were laughing so hard.  We also had a pizza box challenge.  For this Olympic event, I put up a yellow plastic rope tied to a chair where the event started.  Using a talking caution cone which would sound an alarm when you came near it, the athletes could find their way along the rope and turn at the caution cone, heading back to the start.  Carrying a pizza box.  Then 2 pizza boxes, then 3, then 4, then 5.  The team that completed it in the shortest amount of time won the event.  There were several other events to the Olympics with the purpose of having fun and fostering a team spirit.  Of course, when the awards ceremony came, each of the teams had won at least one event, so everyone won a medal for their efforts, (a Brailled, bright, changing color medal with the name of the Olympics in large print.)

Another activity we do at camp, of course, is arts and crafts.  Everyone painted frames.  EVERYONE painted frames.  You do not have to be sighted to paint.  After they were painted, we had a wide variety of doo dads with which they could decorate their frames.  Tactile, three-dimensional stickers which were easy for everyone to use.  My favorite was the young camper who painted her frame like a flower and then stuck bees all around it.  Although the children may be blind, they still like to show off the group picture that will be placed in their frames.  A picture of all of their friends.  Lots of friends.  All who have vision problems similar to theirs.

We have also always done a group art project, one that hangs in our office at work and two that we give away to important state administrators who support us in this camp endeavor.  This year, we did rainbows.  The colors of the rainbow were outlined in puffy paint so that the campers could tell where one color ended and another began.  Then, everyone put their fingerprints to fill in the colors.  Hundreds of big and little fingerprints.  After the fingerprints had dried, we then had them glue on tactile items of the same color.  For example, for the red color I had real little birds, (well, not REAL little birds, but little birds about 1/3 inch high,) apples, hearts, gemstones, (fake, of course) and so forth.  For the orange color we had plastic oranges, flowers cut from a branch of artificial flowers, glitter orange stars, and so forth. This activity not only creates a beautiful 3 dimensional rainbow, but it also helps the campers with color identification.  Many of them did not know that a heart was red or that apples could be red, green or yellow.  (I had a variety of colors of apples just to demonstrate the point.) Someone glued clouds from pillow material, and someone put down a tissue sun.  It came out incredibly awesome!

I feel very strongly that children, ALL children, should volunteer and give back to their community.  When you have a disability, often you get used to others doing things for YOU.  I need these children, as I’ve taught my own children, to know that anyone is capable of giving back, of volunteering, of doing something good for others.  As our special project this year, we used Ziploc bags.  On one side, the children decorated them with tactile stickers, ribbons, lettering and glitter. The fronts of all of their bags say “Thank You”, in print and in Braille.  On the back of their bags, they could choose the stickers of their choice…monster trucks, flowers, spiders, ice cream items, a soldier, and so forth.  Then we took the children to the local dollar store and gave them each $7 so they could buy 6 items themselves to fill the bag with toiletry items for soldiers in Iraq. From this lesson, we learned about the brave men and women who are fighting for their country.  How it is hot and sandy there and there are no Walmarts or drug stores where they can buy the basic necessities such as soap and toothpaste.  The children each made their own thoughtful list of items they wanted to buy.  They learned the $7 bought only 6 items because there is a tax we all have to pay.  One by one, the children went into the store, shopped, and spent their money.  5 toiletry items and 1 “fun” item.  The fun items included such things lollypops, playing cards, gum, yo yos, hard candy, perfume and hair gel, (for one boy who insisted the soldier who got his bag would want to spike his hair into a mow-hawk.)  The children then came back to camp and joyously filled their bags. It was a wonderful learning experience for them, they had great fun doing it, and they learned that anyone can do something for someone else.  Once completed, we had 50 bags stuffed to the brim to donate to Give2TheTroops, Inc., which sends such bags to Iraq, Not too shabby of a day!

Many other wonderful experiences happened at camp this year, and I will write more at another time.  Right now, I am pooped from all of the unpacking, and my bed is calling. I did not see much of my bed during camp for some reason…