Welcome To Hollandby Emily Pearl KingsleyI 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.
Whitebarkby T.R. Ritchie
This is the life I have been givenThese are the seasons of my timeAnd I am seeking out the lightAccording to designI've weathered storms I cannot countTo make this world my homeIn a place where small and twisted thingsCan split the hardest stoneIn one like me you might not seeHow I have managed to existA fragile crooked rack of limbsIn terrain as rough as thisBut for those who take their chances hereExperience has shownSometimes small and twisted thingsCan split the hardest stoneSo shed no tears of pity hereSpin no tales of tragic graceJust let it be enoughThat life is blooming in this rocky placeIt is the proof that seeds will growWherever they are sownAnd that sometimes small and twisted thingsCan 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 Childby 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.