Welcome To Holland
by Emily Pearl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who
have not shared that unique experience to understand it, to imagine how it would feel.
It's like this . . . When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You
buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the
gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of
eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the
plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say. "What do you
mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence,
famine and disease. It's just a different place. So you go out and buy new guidebooks. And you must learn
a whole new language. And you will meet a whole new group of people you would never have met. It's just
a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while
and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland
has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy,
and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will
say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never go
away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact
that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.
Whitebark
by T.R. Ritchie
This is the life I have been given
These are the seasons of my time
And I am seeking out the light
According to design
I've weathered storms I cannot count
To make this world my home
In a place where small and twisted things
Can split the hardest stone
In one like me you might not see
How I have managed to exist
A fragile crooked rack of limbs
In terrain as rough as this
But for those who take their chances here
Experience has shown
Sometimes small and twisted things
Can split the hardest stone
So shed no tears of pity here
Spin no tales of tragic grace
Just let it be enough
That life is blooming in this rocky place
It is the proof that seeds will grow
Wherever they are sown
And that sometimes small and twisted things
Can split the hardest stone
Chush
by Rabbi Paysach Krohn
In Brooklyn, New York, Chush is a school that caters to learning disabled children. Some
children remain in Chush for their entire school career, while others can be mainstreamed
into conventional schools. At a Chush fundraising dinner, the father of a Chush child
delivered a speech that would never be forgotten by all who attended. After extolling the
school and its dedicated staff, he cried out, "Where is the perfection in my son Shaya?
Everything God does is done with perfection. But my child cannot understand things as
other children do. My child cannot remember facts and figures as other children do. Where
is God's perfection?"
The audience was shocked by the question, pained by the father's anguish and stilled by
the piercing query.
"I believe," the father answered, "that when God brings a child like this into the world, the
perfection is in the way people react to this child."
He then told the following story about his son Shaya:
One afternoon Shaya and his father walked past a park where some boys Shaya knew
were playing baseball. Shaya asked, "Do you think they will let me play?" Shaya's father
knew that his son was not at all athletic and that most boys would not want him on their
team. But Shaya's father understood that if his son was chosen to play it would give him a
comfortable sense of belonging.
Shaya's father approached one of the boys in the field and asked if Shaya could play. The
boy looked around for guidance from his teammates. Getting none, he took matters into his
own hands and said, "We are losing by six runs and the game is in the eighth inning. I
guess he can be on our team and we'll try to put him up to bat in the ninth inning."
Shaya's father was ecstatic as Shaya smiled broadly. Shaya was told to put on a glove and
go out to play short center field. In the bottom of the eighth inning, Shaya's team scored a
few runs but was still behind by three. In the bottom of the ninth inning, Shaya's team
scored again and now with two outs and the bases loaded with the potential winning run on
base, Shaya was scheduled to be up.
Would the team actually let Shaya bat at this juncture and give away their chance to win
the game?
Surprisingly, Shaya was given the bat. Everyone knew that it was all but impossible
because Shaya didn't even know how to hold the bat properly, let alone hit with it. However
as Shaya stepped up to the plate, the pitcher moved a few steps to lob the ball in softly so
Shaya should at least be able to make contact.
The first pitch came in and Shaya swung clumsily and missed. One of Shaya's teammates
came up to Shaya and together they held the bat and faced the pitcher waiting for the next
pitch. The pitcher again took a few steps forward to toss the ball softly toward Shaya. As
the pitch came in, Shaya and his teammate swung at the bat and together they hit a slow
ground ball to the pitcher. The pitcher picked up the soft grounder and could easily have
thrown the ball to the first baseman. Shaya would have been out and that would have
ended the game. Instead, the pitcher took the ball and threw it on a high arc to right field,
far beyond reach of the first baseman.
Everyone started yelling, "Shaya, run to first. Run to first." Never in his life had Shaya run
to first. He scampered down the baseline wide-eyed and startled. By the time he reached
first base, the right fielder had the ball. He could have thrown the ball to the second
baseman who would tag out Shaya, who was still running.
But the right fielder understood what the pitcher's intentions were, so he threw the ball high
and far over the third baseman's head. Everyone yelled, "Run to second, run to second."
Shaya ran towards second base as the runners ahead of him deliriously circled the bases
towards home.
As Shaya reached second base, the opposing short stop ran to him, turned him in the
direction of third base and shouted, "Run to third." As Shaya rounded third, the boys from
both teams ran behind him screaming, "Shaya run home." Shaya ran home, stepped on
home plate and all 18 boys lifted him on their shoulders and made him the hero, as he had
just hit a "grand slam" and won the game for his team.
"That day," said the father softly with tears now rolling down his face, "those 18 boys
reached their level of God's perfection."
The Special Mother
Most women become mothers by accident, some by choice, a few by social pressures, and a couple
by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever
wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for propagation with great
care and deliberation. As He observes, He instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron saint, Matthew."
"Forest, Marjorie, daughter. Patron saint, Cecilia."
"Rutledge, Carrie, twins. Patron saint . . . give her Gerard. He's used to profanity."
Finally, He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly. Could I give a handicapped child a mother who doesn't know laughter? That would be cruel."
"But does she have patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the
shock and resentment wear off, she'll handle it."
"I watched her today. She has that sense of self and independence so rare and so necessary in a
mother. You see, the child I'm going to give her has his own world. She has to make it live in her world,
and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps. "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a
woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be
envied."
"She will never take for granted a spoken word. She will never consider a step ordinary. When her
child says 'Momma' for the first time, she will be witness to a miracle and know it. When she describes
a tree or a sunset to her blind child, she will see it as few people ever see my creations."
"I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise
above them. She will never be alone. I will be at her side every minute of every day of her life because
she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in mid-air.
God smiles. "A mirror will suffice."
Dedication by the Author:
Someone I love relies on me in ways you will never understand.
Someone I love endures pain and challenges that break my heart and
renew my spirit at the same time.
Someone I love is unable to advocate for themselves for things that
most of us take for granted.
Someone I love will never have the opportunities that every child
should have.
Someone I love will need unconditional love and support after I am
gone - this frightens me to the core.
Someone I love encounters pity, stereotyping responses, and
prejudice at every turn, because they look, act, and/or learn differently
than others.
Someone I love has needs that require me to allow "outsiders" to have
power and input in areas that should be mine alone to meet.
Someone I love will continue to look to me for everything in life long
after other children are able to assume a place as part of the world.
Someone I love has needs that require more time and energy than I
have to give.
Someone I love has needs that mean I am not able to meet basic
needs of my own.
Someone I love has needs that have become the driving force behind
major decisions my family makes.
Someone I love has changed me in ways I will never be able to
describe.
Someone I love has taught me about love and about the really
important things in life. . . .
Living in My Skin: The Insider's View of Life With a Special Needs
Child offers you a unique opportunity - a "day in the life" view of what
families of children with special needs experience. From diagnosis to
adulthood, you will see how children and parents can overcome
challenges and preconceptions to create their own successes and
triumphs.
But there is something else happening within these pages. Living in
My Skin affords parents of children with special needs something vital
to us all: the chance to reach out to others. Although the stereotype is
that these parents are the ones who need support, one parent
reminds us, "they also need to have the opportunity to give to others
besides their child...there is something very healthy and balancing in
the giving...it does make a difference to all of us." With this book,
author Lori Hickman provides one such opportunity.
Whether you are looking for a useful resource for your practice or
simply want to increase your understanding of the families with
children with special needs, Living in My Skin will give you what you
came for and much, much more.
Living In My Skin: The Insiders View
of Life With a Special Need Child
by Lori Hickman
Chicken Soup for the Soul: Children with Special Needs: Stories of Love and Understanding for
Those Who Care for Children with Disabilities by Jack Canfield - Amazon.com.
These stories provide insight, comfort, and connection with others who have walked this powerful
and transformational journey. The authors of these candid stories relate their own experiences of
adjusting, reaching out, and flourishing and share their universal worries, their tears, and the
laughter that come with this extraordinary relationship. Most important, through these stories, you
will be guided with the wisdom of fellow parents, caregivers, and those with special needs to help
you be the very best parent or caregiver you can be.