The Dad Story Project
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Being the father of a handicapped daughter
By Ken Blackmer, February 1998
Stephen was a happy and healthy little boy who wanted nothing to do with being away from his daddy. It was hero-worship. I could do nothing wrong. I always knew exactly what to do and how to do it. I found fatherhood to be a very rewarding and ego-boosting experience.
Then Stephen started school. It didn’t take him long to realize that Daddy didn’t have all the answers. It came gradually, but by the time he went away to college, Dad really didn’t know much at all. Steve is an electrical engineer now, and he can say in one breath enough technical jargon to utterly confuse his once all-knowing Daddy. The only saving grace to the whole situation is that I may not have all the knowledge he possess in the electrical field, but I can still amaze him when it comes to woodworking, and I still have the upper hand in common sense. Well, at least he lets me think so.
When I realized I was the father of a Down Syndrome daughter, I hate to admit it, but I was embarrassed. I wanted to believe she would outgrow the condition. Of course she didn’t. My denial went deep. I wanted to blame my wife. I wanted to blame the environment. To be blunt, I wanted to place the blame just about everywhere as long as it wasn’t me. This reaction, I am told, is quite typical in new fathers of the handicapped. When the moment of truth finally is realized, some men can’t face up to the fact and divorce their wives just to get out of the situation. I am fortunate in the fact that I never considered leaving. This was my family and I had the right to stay. I figured my wife would take the brunt of the training and embarrassment—my way of coping with a child who, because of her facial features, could be immediately identified as “retarded.”
I was stationed with the First Army Band at Fort Meade, Maryland, from the time of Sherrill’s birth to just after her fourth birthday. One of the things an Army band does is put on performances at local schools. I panicked the day I discovered we were scheduled to play at Sherrill’s school. I could just see all these young soldier/musicians and combat-hardened soldiers making fun of the “retards”, one of which happened to be my daughter. I was so sure it would happen that I went to my commander and told him of my concerns. He told me that he wasn’t so sure the band members would react the way I was sure they would. He told me to have a little faith in the maturity of my peers and asked if I would like him to talk to the band and explain I had a daughter attending the school. I told him no. To me that would be advertising something that I didn’t want advertised. He said nothing to the band and we got on the bus and left for the concert.
I had my ears wide open on the way to the concert to see if I could hear any comments. Nothing. My fellow band members acted just like it was another job. For me it was not just another job; it was probably the most important job of my life. It turned out to be the turning point in the relationship I had with my daughter.
We got to the school about 45 minutes before the concert was to start. This was a normal arrival time to give us a chance to set up, warm up, and tune up. To my amazement the job didn’t start on time, not because we weren’t ready, but because the majority of the guys were too busy playing with the kids and showing them how to play their horns. Combat-hardened soldiers were on their knees playing with the little ones. Guys famous for their four-letter-word vocabularies were talking in baby talk and kissing the cheeks of kids I had always found repulsive. I was the only one not actively involved in showing love and compassion to these children. I was saving mine for my daughter.
When Sherrill’s class arrived at the gymnasium to hear the band, I rushed over to her as she rushed over to me. I was actually hoping I would be noticed by my fellow soldiers. I was bragging. The concert went exceeding well as the band performed with a passion I have not seen before or since. My commander looked at me from the podium and winked. He felt what I felt. He felt pride. He knew his musicians would fall in love with these kids. He knew I was the only person there with prejudices about the handicapped. I was the one with a chip on my shoulder.
From the very beginning I was Sherrill’s hero. Her first words were her attempt at saying Daddy. It is a very heady feeling to be a hero to someone. Daddy was and continues to always be there for her. She is now 23 years old and even though I may make the wrong decisions some of the time, even though I may not have the answers all of the time, and even though I may not deserve it, I am her knight in shining armor. I am the best man she knows. She compares all other men to me. She tells me at least twice a week, every week, that “Daddy’s a good man.”
There are times I don’t feel I am such a good man. I quit my job of seven years over my principles, leaving us without the needed income. I didn’t have another job waiting in the wings. I continue to look for other work, but after two months nothing has developed. To me and my way of thinking I am not such a good man. To Sherrill I am still her hero. To her delight I am home most of the time. What more can she ask for? When she gets home from school, Daddy meets her school bus. Imagine for a moment what it would be like for your hero to meet you every day when you get home.
Being the recipient of such attention makes me feel I have not just some, but a great deal of worth in this world. Even though I am going through a very tough time in my life, Sherrill makes it better. Nothing matters with her around except having her around. Her hero-worship makes me a better person—makes me want to be a better person, because I don’t want to let her down.
Sure, people may stare at her and us when we walk down the street, but if my sweet Sherrill were Miss America, the same people would stare at her. She will never wear the crown, but to me she is Miss America. She exemplifies the wholesome goodness we have come to expect of the young lady who holds that title. I am her hero and she is mine.
Mine is the story of a proud father. I am no more proud of my son than I am of my daughter. They each have their niche in life and they are very good at what they do. I believe being a good father to a handicapped daughter is simply letting your heart overrule your prejudices.
Let go and let God. If God didn’t know I could do it, He would have given her to somebody else, and my life and my world would be diminished.
Well-meaning experts
EDITOR’S NOTE: This is the first story ever submitted to The Dad Story Project, and the first of two stories written by Ken Blackmer. When I started this ministry to fathers, this is exactly the kind of story I hoped to see. Tender, encouraging, challenging, hopeful, helpful. Thank you, Ken! I hope this story is the first of many—hey, let’s be bold and say hundreds (and no, Ken, you don’t have to write all of them 😉 ). And I hope this story encourages you readers out there to write your own stories and let me share them with the world. You can write as a dad or mom, a child or sibling, a grandparent, neighbor, or friend—any perspective is welcome as long as it honors fatherhood and celebrates growing up. Please go to the submissions page to see the guidelines, and then send me your story!
—Peter Lewis
By Ken Blackmer, February 1998
My wife Connie was born in Montana where her father was stationed in the Air Force. Her parents moved back to Vassar, a small town in Michigan, while Connie was still an infant. Within a couple of months my parents moved to Vassar from a farm a few miles away, where I was born. Connie and I met and fell madly in “like” in the third grade. So much so, in fact, that at recess I once pushed her on the swing so long I got a blister. God had predestined us to be a team from just about the beginning of our lives.
I joined the army in 1972 and we were married seven months later. One year and a month after that Connie gave birth to our first child, Stephen, while we were stationed in Indiana. Three months later I was transferred to Korea and had to leave my young family behind. When I left for Korea, Stephen did what all three-month olds do. He slept, cried, drank from a bottle, and smelled sweet after a bath; although at other times he didn’t smell so sweet. Twelve months later I walked off the plane and a little boy walked up to me and said “Hi Daddy.” Many milestones occur in the first fifteen months of life. I had missed his first steps, his first solid food, and his first words. Stephen grew up filling in as the man of the family whenever I was away on assignment. He is now a successful electrical engineer and a great source of pride to his parents. In 1976 Connie gave birth to our second child, Sherrill, in Washington, DC. The four of us, born in four different states, brought together by God.
When we were preparing to depart Walter Reed Army Hospital with Sherrill, the doctor told us that he would like to have us come back so he could run a blood test on Sherrill. “What on Earth for?” we asked. He told us that from her facial features it appeared to him that she may have Down Syndrome. We had no idea what that meant, so after researching it we prayed the doctor was wrong. He was not. What went wrong? We followed all the prenatal procedures. Connie ate healthy food. We didn’t drink, smoke, or use drugs. There was no history of retardation in either of our families. Connie and I both graduated at the top of our high school class. We both went to college. How then could we be the parents of a retarded child? Who was to blame? After extensive research, the experts at Johns Hopkins Hospital explained it as an “Act of God.”
“Why God, did you do this to us?”
All parents know raising children is a challenge. If only there was an owner’s manual. Parents of handicapped children can attest to the fact that raising a “Special” child is even more challenging. There are so many experts out there who know exactly the right things to do for your handicapped child. Most of these experts not only don’t have any handicapped children of their own, but all their expertise on handicapped children comes from the pages of books written by other experts who don’t have handicapped children either.
The first of many experts we talked to was the doctor who first spotted Sherrill’s almond-shaped eyes and her small nose without a bridge. His advice to us was that we basically had two choices. We could put her into a home or we could take her home and love her. She would never talk, walk, dress or feed herself, read or write. The first option never entered our minds. Sherrill was our baby, and was going home with us.
Due to our ignorance, or maybe divine guidance, we treated her as we would have treated any other baby. She never cried, and from the very beginning slept through the night. We even had to wake her to feed her. We dressed her in the cute frilly clothes that parents dress their little girls in. We talked to her just like we talked to Stephen when he was a baby. We rocked her to sleep and spent a lot of time singing to her and hugging her and loving her.
When Sherrill was one year old she started a program called Infant Stimulation. Loving therapists and nurses worked with her and other handicapped kids to improve their muscle tone and other motor skills. The parents got together weekly and discussed the challenges they had faced that week and shared information about programs available for our kids. I will never forget the day I went in to pick up Sherrill from school and the therapist looked up at me and said, “You must be Dadadadadah.” Sherrill could talk and was trying to tell the therapist about me.
We set up parallel bars in our hallway and she struggled daily to move her feet. It took almost three years before Sherrill could walk. Tentative step by tentative step, she spent most of her time getting back up again after her weak muscles let her down. She taught us all about determination and perseverance.
Sherrill learns best from repetition. Connie spent countless hours at meals putting the spoon back in Sherrill’s uncoordinated hands and guiding it back to her mouth. The first time Sherrill actually fed herself she picked up a morsel pinched between her first two fingers and gently guided it to her mouth. Eventually, Sherrill gained the coordination to use utensils and usually has better table manners than her father.
In 1980 I was transferred to Virginia and Connie, Stephen, and Sherrill moved back to Michigan, staying with her parents while I went on to the new assignment and awaited housing. During this four-month period Sherrill attended a little school for the handicapped in Caro, a town about twenty miles from home. Both Connie and I figured the separation would only last about four months and Sherrill wouldn’t lose too much in that short period.
This little school had long-reaching effects on us that we didn’t realize until my family joined me and she started going to a big school for the handicapped in Virginia Beach, Virginia. We talked to her new teacher about a class Sherrill had taken in Michigan called Total Communication. The procedure is to use sign language at the same time as speaking; eliminating communication frustration. If your mouth can’t say it, maybe your hands can. Her new teacher told us she had read an article about this new way of instructing the mentally handicapped and she was interested in trying it. Connie, Stephen, and I learned sign language so we could better communicate with Sherrill. There were a dozen or so kids in the class. Their parents also learned sign language. Needless to say the Total Communication Class was a complete success, helping both the child and the parent communicate with, and better understand, each other. It ended a lot of confusion and frustration on both parts.
It wasn’t until I retired from the Army and we moved back to Vassar that Sherrill learned to read and write. Again she attends the little school in Caro. She will read us stories from time to time. The books she reads are of the “Dick and Jane” variety, but she reads. She knows her alphabet and regularly writes short notes to her Aunt as well as a yearly letter to Santa. She can even sign her name in cursive.
All of the experiences I missed in Stephen’s first fifteen months of life have been given back to me a hundred-fold with Sherrill. Both Connie and I would love to find the doctor who told us to just take her home and love her and show him what a fine and educated woman Sherrill has become. She is now twenty-three years old and still attends school. She plays in a chime choir, loves to sing, takes piano lessons, is a cheerleader at her school, performs in school programs and regularly wins trophies in basketball.
If we would have listened to the experts I truly wonder how much Sherrill would have accomplished. God didn’t let us listen to the experts. He made us listen to our hearts.
“Why God, did you do this for us?”
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