During my more than 24 years as Program Director of Social Services and as Training Coordinator for Resources for Children with Special Needs, and now as a private consultant and trainer, I have had the great pleasure of asking thousands of parents of children with disabilities to tell me about their children’s talents, skills, abilities and passions.
Very often, that question has been met with astonishment: Someone is actually asking me to accentuate the positive—as the old song says, what a concept!
My heart has always been warmed and my soul and spirit uplifted by the myriad responses gleefully uttered from the lips of these proud parents: “Susan is a gifted musician—she hears a song once then sits down and figures it out on the piano.” “My son swims like a fish.” “Thomas has memorized the entire subway system—he is passionate about trains.” “Hector always greets me with a hug and seems to know when I am feeling down—he brightens up my life.”
My response is to have everyone in the room praise and applaud these positive stories of hope, joy and delight. We, of course, also move on to discussing their needs, wants, wishes and dreams.
I often tell the story of an angel named Matthew, who once blessed this world. When Matthew was born, the doctor who had obviously not been through any sensitivity training, felt compelled to tell the new parents the bad news that, after conducting genetic testing, Matthew was determined to have a very rare condition called I-Cell Disease. The doctor proceeded to elucidate that Matthew should not be brought home but instead be institutionalized. He then felt compelled to share that Matthew’s immune system would, over the course of 5 or 6 years, destroy all the organs in Matthews tiny body.
“Why put yourselves through such misery—he will never grow or develop.”
Needless to say, these loving parents took Matthew home and received assistance under the Medicaid Waiver program to meet many of his complex needs. He was enrolled in Early Intervention, where his occupational therapist Ilaine, only saw his potential skills, talents and strengths. Matthew learned to happily feed himself, walk with a walker, sing, dance and love. Oh, how this child gave and received love.
He was pure love. This beautiful child positively affected ever human being who was fortunate enough to know him. I made him pancakes during one visit and he stopped eating for a moment, turned his steroid filled, barely moving body, to face me, so he could tell me, “Hey, Gary, these are delicious!”
Matthew by the way had a photographic memory and could tell you the name of every player in the Yankee dugout, give you directions to Grandma’s house, and recite where every food item in the supermarket was located.
There is no miraculous ending here—Matthew died after six glorious years on earth. Six years of love and joy. Six years of enhancing the lives of everyone who was fortunate enough to have known this miraculous child.
His funeral was attended by all the friends, neighbors, family members and admirers whose lives had been touched by this angel. The doctor who had diagnosed Matthew was not present, of course.
Matthew’s memory lives on in every workshop I conduct. His parents graced me with a gift that I will always cherish. Knowing that Matthew would soon be leaving this world, they had him record anything that he wanted to say to those people in his life for whom he cared. Sitting on my dresser is a small photo book with Matthew’s picture in it. There is a button in that photo-book. When you press that button, Matthew’s sweet voice can be heard saying, “Hello Gary, I love you.”
His spirit helps to motivate all parents of children with disabilities who have been told by “professionals” all the things their children would never be able to do. Just as the Bumblebee should not be able to fly, according to scientists—but does (because nobody has ever told the bumblebee), so, too, will all children with disabilities continue to fly, as long as we continue to recognize that behind every label of disability there is a human being with abilities, talents, skills, passions and love to give and receive. We must never take the hope away!
Behind every child with a label of disability there’s a child with ability to be cherished, praised and supported.