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Downs Syndrome
Jytte Holst Bowers
I had slept through the night and not even wondered why
the nurses hadnt brought my baby in so I could be assured that
ten toes and fingers were in place. At 8:00 a.m. my doctor sat at
my bedside.
Do you know what a Mongoloid is? he asked.
Did I know?
Denmark, rocked little red haired Anne back and forth, stilling
her cries as I had wanted to still her future.
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But, let us look at it this way, said Dr. Swartz. You have
got a healthy baby. Usually children with Downs syndrome
have complications with their hearts and lungs, but this little boy
seems to be wellso let us take it from here.
He had said
he said.
We found the star for the tree, and our girls were delighted
with their new little brother. Christmas had to go on for our
family. Eric is our Christ Child, Jim said, the one to teach us
what love is all about.
We were visited by a physical therapist within the first
month after our homecoming, and we were all taught about the
importance of moving Erics legs and armsand also to babble.
Babble about anything to prepare him for speaking.
I was put in contact with another mother of a Down
syndrome through Social Services. She came to our house one
afternoon for a cup of coffee and showed me pictures of a small
boy. I think hell be able to help us with our dairy farm some
day, she said. Then she took another picture from her purse.
Here is our daughter. We had to put her in an institution. She
is not as healthy or as capable as her brother.
It was incredible as I looked at this woman, a mother of
two children who had Down syndrome. She was so positive,
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Hes
walking.
So now the little boy the doctor never thought would walk,
let alone talk, was on his way. The young teachers were so
enthusiastic. I remember Jim saying, When you see a light
kindled in a students eyes, you know he has understood, and it
has been worth all the effort. It is easy to understand the pride a
teacher of special education feels. When they have reached a
goal, they simply glow.
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They were a
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traffic, and Eric chose the center line for his new adventure. I
followed, screaming, and caught up after what had seemed an
eternity. Then the punishment, a couple of hard smacks on his
bottom. Gary, one of the rangers, had followed me. Now it was
my turn for punishment.
Why in the world did you do that? Eric doesnt know
better, Jytte. You shouldnt have hit him.
He could have been run over by a car, I snapped. The
only way he might learn is by giving him a punishment that
hurts. Then he might not do it again.
I bit my lips. Gary was the last person I should turn my
anger on. He was one of the kindest persons I had ever met,
although he had a handicap that seemed much harder to bear
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Crary
School
in
Marshall
into
Doris
Klaussen
Jim loved his job at Olivet College, where I also had a job
as college nurse, but in 1979 things began to unravel and we
decided to move west. It really wasnt our first choice. Jim had
been encouraged by a British professor at a Danish university to
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The teacher had been angry and pinched his cheek. He put his
small hand up to my cheek to show how it had been done. I
should not have laughed, but I was happy our little son had
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should
Gateway had not only opened for Eric but for all of us to an
exciting future which was about to unfold a year later after Jim
had found a permanent position again.
*
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three daughters. When Eric was born her greatest concern had
been how she could help me through the first difficult period.
Since Eric is born on a Sunday, he shall be able to see all
the small fairies of the woodland, she wrote in her first letter. It
must be an old Danish saying. Rola knew so many of them.
She was steeped in literature and the philosophy of the great
thinkers. I myself have often thought that children like Eric
could see the woodland, see the sunbeams dancing on the leaves.
They are the loving children of the world.
Unfortunately, his birth had not gone so well with Jims
parents. We received a very harsh letter from his mother after
Erics birth which in a few words told us that they considered
him a misfortune, one we had brought upon ourselves. I have
heard of other grandparents of handicapped children who had
difficulty in accepting such a fact. Later on I was asked by a
friend of ours if I would write a letter to his niece who had given
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So much
Those inside
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couple of years later I found out. One evening when Eric was
helping me with the dishes he suddenly said
I went to China
To see the china
Then they eat
Out of tin plates
Oh Eric, you have got it, I thought. You can juggle with
words like your grandfather and great grandfather. Wouldnt
they have been proud to have known you?
*
SOMEBODY SPECIAL
Zooms through the snow on his bike
Directs our band when we give a concert
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He taught
Eric for almost twelve years, a time during which he put his
mark on a number of handicapped children.
Charlie is a father figure, a brother figure, and even more.
He is the friend the children can lean upon. Many nice, loving
and capable teachers have come and gone in the Special Ed
classroom. The memory of their faces has become blurry, but
Charlies face stands distinct. His hair and beard, by now white,
gives you the feeling of a year around Santa I also believe that
is what the children see, even now, when they put their hand in
his with a great confidence.
As a result of Charlies efforts, a poem written by Eric won
the South Dakota Yes I Can award for handicapped students
who had excelled in the arts. Of course we were present at the
annual meeting of special education teachers where the award
was presented. At the proper time Eric rose and made his way to
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SOUTH DAKOTA IS
South Dakota is
Buffalo grazing on the plains
Mount Rushmore teaching us to love our country
Lakes for canoeing, fishing and swimming
Parks for hiking, picnics and camping
Gold, hiding in the creeks and hills
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Eric wore the tuxedo his sisters had made him for his high
school graduation. It was difficult to match his dress code,
even more
South Dakota.
Amongst the congratulations was a letter signed personally
by President Clinton.
* * * * *
In addition to Erics poetry I cherished a very special letter
written to Dear Abby. Two friends of mine had cut it from a
local newspaper; each thought that I should read it, and I think
many mothers of handicapped children will recognize the
feelings of Emily Pearl Kingsley, who wrote this very special
letter.
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WELCOME TO HOLLAND
I am often asked to describe the experience of raising a
child with a disabilityto try to help people who have not
shared the unique experience to understand it, to imagine how it
would feel. Its like this.
When you are going to have a baby, its like planning a
fabulous vacation tripto Italy. You buy a bunch of guidebooks
and make your wonderful plans. The Coliseum. Michelangelos
David. The gondolas in Venice. You may learn some handy
phrases in Italian. Its all very exciting. After months of eager
anticipation, the day finally arrives. You pack your bags and off
you go.
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The flight
Theyve
landed in Holland and there you must stay. The important thing
is that they havent taken you to a horrible, disgusting, filthy
place full of pestilence, famine and disease. Its just a different
place.
So you must go out and buy new guidebooks. You must
learn a whole new language. And you will meet a whole new
group of people you would never have met.
Its just a different place. Its slower-paced than Italy, less
flashy than Italy. But after you have been there for a while and
you catch your breath, you look around, and you begin to notice
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Eric was in his thirties when Jim and I tried, albeit not
successfully, to see if families of handicapped children were
interested in joining a parents group. Amongst other things Jim
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Lots of things happen every minute around the globe. Some are
very sad, but so many are very happy. We will have to get along
the best we know how.
Eric is now 30 years old, and tomorrow he is going to
Denmark to visit his sister, Michelle, who lives in Copenhagen.
He will travel by himself. If we had been told that when he was
born, we would not have believed it.
We have always tried to treat Eric as we treat our other
children. The people who did that as well became our friends.
You do need support, so try to find friends who take the situation
as a matter of fact, friends who accept that you have a different
child, but not a lesser child, a child who will give you and your
husband so much pleasure.
Our best wishes for you and your family,
Jytte and Jim Bowers
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The
As a
But in China
They are called
The liberals
Every year on my birthday
They gave me two cakes in a row
China is so good to me
I want to go back, someday.
Eric Bowers, 1988
*Dr. Sun Yat Sens grave in Nanjing
*
Jim Bowers
Handsome
Strong
helps around the house
retired from teaching
I am his son
and proud to bee.
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once or twice a week by one of the staff from the center who
looks after their needs.
We have been lucky to have Peggy Erskin as Erics service
coordinator for the past few years. Amongst other things she
helps him with his shopping and tells him when his bachelor pad
looks less than desirable.
As a
result the center has had close ties to the community for many
years. A number of clients have been given part-time jobs in the
town and are thereby not isolated; seen, not shoved off into a
corner and forgotten. NHTC is constantly being evaluated by
parents and state officials to ensure that the highest standards are
being met.
A yearly banquet is held for the clients and their families.
Every person under their care receives a certificate of
accomplishment, no matter how small as step it may seem to socalled normal people, and a round of applause.
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The
healthy baby, the doctor had told us when Eric was born, and
yes, he was, but was he also a happy one? In general children
who have Downs syndrome have a good disposition. There
have been times, however, when I have seen Eric unhappy. Let
us sit down and talk about it, I want to say, but I stand in No
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thought of, which certainly would have made her eyes sparkle.
Her big brother most likely had been her baby-sitter in the
lovely summer days when he would rather have played. Was it a
wonder that he had difficulty coming to terms with his anger?
I never have felt that our daughters had anything but love
for their little brother. They laughed with him. They coached
him. They teased him. It was obvious when Michelle came
home from school one day that she had been in a fight. A boy
had called her brother a retard. That was not to go unpunished.
Eric was part of their lives. He was the ring bearer at
Benediktes wedding, and some years later he gave Christine
away when she got married in Florida. Jim had not been able to
get away from his job in Lithuania. Their brother was a part of
their childhood. Later he became essential to their outlook upon
life.
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interest in him. He never seems lost for words nor for ideas
about his life.
The loss, however, will always be there when I call in No
Mans Land, and the only answer I get is an echo.
*
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little brother, whom they had helped so fully to achieve the good
life he was now living.
In memory of his graduation we gave him our dining room
table. Jim had made it for us while Eric was still a small boy.
The table we had moved from one self-built house to another
was made of long oak planks glued together and placed on top
of the stand of an old Singer sewing machine. It contained so
many memories, which now became Erics. In the center his
sisters had painted a little schoolhouse on the tabletop, and the
many who attended the party signed their names and good
wishes on it.
*
enjoy friendship, the capital and also the Capitol at the end of a
cherry blossom season.
As we settled in the plane toward Washington, the young
man next to us wanted to engage in conversation. He turned
toward Eric, And do you have a girlfriend?
Of all the questions, I thought, how silly. However, he
meant to be kind, so I couldnt be too angry at him.
No, Eric answered. When I get one, she has to be
normal.
It brought tears to my eyes. How many times had Eric said,
When I get married, and how many times had I replied, Eric,
not everyone gets married. I have a cousin in Copenhagen who
never married. She lives very happily by herself.
With three sisters married, however, it would be natural that
Erics thoughts should involve marriage. In later years the talk
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drove us into the city so Eric could see one of the greatest
presidents in floodlight.
The beautiful wall with the names of the dead from the war
in Vietnam was too abstract for Eric to understand. I
remembered our students struggle with that war.
I also
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Capitol.
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was riding her horse. When she saw Eric, she rode up to him to
greet him personally. He loved it.
*
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It is
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told me he stood so far back it was hard to see, but a man lifted
him up on his shoulder so he could wave with the crowd.
Jim and I often wondered how much Eric understood the
sermons given by his minister in Praise Fellowship. One day,
however, he called Jim on the phone.
Dad, from Friday to Saturday is one day.
Yes, Jim answered.
And from Saturday to Sunday is one day.
Yes.
Then why do we say Jesus rose from the dead on the third
day?
Jim explained to him that the Jews count a day from
sundown to sundown. Both he and I were left to wonder what
retardation really meant.
I am not sure it is
Spearfish is my town
Its people belong to me
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I belong to them
Haiku by Eric
Yes, it is as simple as Erics little Haiku. It is very difficult
if not impossible to raise a handicapped child without the
support of others in the community. We have been fortunate to
live in such a village, to live peoples kindness, to live them
taking time to stop and talk to Eric, to live in America at a time
when the true value of thoughtfulness and kindness is
demonstrated.
Before Eric had finished his high school he had a job at
Burger King; however, as time went on it proved to be too
stressful, so he had to stop. Fortunately, at that time the building
of our new city hall was finished, and a janitorial job opened up.
It was a two hours cleaning job Monday through Friday.
Northern Hills Training Center provides job coaches who stay
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with their clients for a month or so until they are familiar with
their jobs and they can do the work which is expected of them.
It is about a mile from Erics apartment to his job, and he
walks it every day in all kinds of weather. It is on his way home
he makes the little detours during which he meets people. At
Ace Hardware Store they tell me they can set their watches by
Eric. He leaves his job at four p.m. and gets to their store
around ten minutes later. Every day they give him a bag of
popcorn.
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