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Families after SCI - a Child’s ViewThis article is from the Pushin' On Newsletter, Vol 16[2], Summer, 1998.
by Linda Lindsey, MEd How will my children react to my spinal cord injury and my using a wheelchair? This is a real concern of any parent after their injury. In talking with several young people whose parent has a spinal cord injury, their outlook was very positive. Adam Sartain - now 19, 3 when his dad, Scott was injured (C-5/6 tetraplegia). For those children who were old enough to remember when their parent was injured it was a time of change and feeling frightened . . . But those feelings did not last long. "My mom was 8 months pregnant at the time of dad's accident. I remember having to go from house to house, place to place for about 3 months after dad was hurt. Then he came home with a halo and it blew my mind. I knew I had a new sister and a dad in a wheelchair. It was a big change for a 3 year old." A.S. "Everyone was crying at first. I was just scared. I remember going to the hospital and asking mom if dad could still spank us when we were bad! Mom tells me I asked her if it meant we could now park close to the store!" L.T. "When it first happened I thought life would never be the same, but it is. A couple years after the accident nobody even thought about it anymore." H.T. "I remember crying but I don't think I really understood at the time. It was confusing because I was kept by a variety of relatives and did not get to see dad at first. I just wanted my dad to be all right and come home." M.L. TIP:If possible, keep the child's routine as normal as possible. Explain what is happening in simple terms. Reassure them and let them know that you (the adult) also are sad or scared, but that things will be OK. There are many changes that the family goes through, yet for all of the young people, what was initially different quickly became the routine. For several families it meant some role reversals. Scott Sartain and Jimmy Leonard assumed the roles of "Mr. Mom" as their wives went to work outside the home. Mike Drummond, now divorced, stays home and cares for his daughter after school and during the summer while her mom works. "It is adventurous. It is not different for us. It is what we know. We go with the flow. He's just papa!" E.S. "We all have to do handy work in the house. But really mom does most of the work around here and dad is our supervisor! Our mom goes nonstop from 5am to 11 at night. We don't appreciate her enough." B.S. "People come over and say, "Oh your dad is in a wheelchair, and I say, Oh, I didn't tell you, cause I forget." L.T. "Dad still gets in the yard and throws with us. He just can't show us how to do some things. At softball practice, as our coach, he would have to try to talk us through something, like how to stand. We wouldn't understand and he would have to get someone to show us. He gets aggravated at that." H.T. "It is something that you live with and get used to." M.H. TIP: Explain the need for changes in the family routines . . . then treat this as normal for your family. While the youngsters may dislike some limitations their parents have, they all accept the disability. They continue to see their parents as very capable and very adaptable. "When we go to Six Flags I want dad to go on all the rides with me, but he can't. But he has a lot of fun winning hats and prizes. I'm glad I have him because we go on a lot of field trips for school and I want him to go. He makes a way to go and will drive us." M.H. "Other parents can do more but dad has more time for me. He goes to my ballgames, takes me swimming, fishing, and hunting and to Braves games. He is also a City Council member. He helps me with homework and school projects." M.D. "There was the time when the lift on the van broke. Dad wanted to get to my ball game. We borrowed a friend's pick-up truck with a lift on the back. I'm warming up in the outfield and see my dad riding down the street in the back of the truck. Emily and Beth, riding in front, kept ducking down so friends wouldn't see them. Dad is waving to everyone. He wasn't embarrassed!" A.S. "I am learning to drive now. Dad tells me to slow down. At least he can't act like he is hitting the brakes like mom does. He just turns up the radio and sits and dances!" H.T. TIP:Continue to enjoy doing as much as you can as a family! Stay active and involved in your children's lives. The parent's spinal cord injury does not have to interfere with the youngster's social life. These young people see their parent in a very positive way! "Our friends love him. They say 'Your dad is so cool!' If we are at a ballpark my friends come up and go straight to my dad, not because he is in a wheelchair, but because of his personality. My boyfriend and dad went fishing and they "bonded". He was amazed how dad can get in the boat and catch more fish than anybody." H.T. "Dad's got the best attitude. Everyone thinks he is funny. My friends all like to talk to him. No one likes to talk about him being in a wheelchair but then he says, 'I stayed up walking the floors last night' and everyone starts laughing." Sartains "Dad lives alone. He takes care of everything. Dad does everything he can with me." M.D. "My dad is terrific. He is so upbeat and loves to have fun and play games. He is a great man with a great faith in God. He is there when I need a friend!" M.L. "Dad substitute teaches at my school. The kids got used to him real fast. Everybody loves him." M.H. "Dad jokes around about using a wheelchair, he'll say, 'I'm so old I can't walk!' He gets others to laugh. The only difference about our dad is he is sitting down . . the only thing." Thomas' TIP: Keep a positive attitude. Your child sees you, not your chair. Learning to make adjustments and adapt becomes a part of everyday life. These young people have developed responsibility and awareness . "When we go on trips it takes planning and is a lot more work. But where there is a will there is a way. Sometimes it can be a hassle but we've been to a lot of places, like Six Flags and Gatlinburg. Sometimes dad has to sit and watch us, but we've even gotten dad out on the beach!" Sartains "Getting dad a seat for ceremonies at school takes planning. For my high school graduation I had to ask the teacher if I could save seats in front." B.S "Dad can do a lot of things, like drive. On a field trip to Atlanta my friend's mom was going to ride in my dad's van. She was nervous to get in the van because she did not know how he drove. But once we got on the road she was OK." M.H. "I find myself helping other persons who might need help when in public places. Since dad's accident I will go up to people who are in a wheelchair and say "Hi". Before I used to stare or look away." Thomas' "Through dad's organizing Wheelin' Sportsmen, I have met some neat people with all types of disabilities and we have become good friends. I've met people who have been in the Paralympics, it's cool." H.T. "I used to get mad when people would stare. But I've learned that they are curious. I've gotten very good at explaining and putting people at ease." E.S. "I wrote a story in English class about dad. My teacher has a nephew in a chair, now she has gotten him involved in Wheelin' Sportsmen." H.T. A major "Pet Peeve" for all the youngsters is people misusing the handicap parking places! TIP: Turn your problems with accessibility and accepting your SCI into learning experiences for your children and their friends. Awareness helps break down barriers. There can be a fine balance between the child being a caretaker and a helper. All of these families gave their children suitable responsibilities that kept the roles of parent and child separate. "I will do things to save him trouble. If dad is in bed and asks me to carry something to the kitchen for him, I do it. It's easier for me. But if he is getting up anyway, he does it!" L.T. "I help my dad out in the yard; feed the birds, feed the cat, empty the garbage, and sometimes I help with the laundry. When we are shopping, I have to move things out of dad's way in the stores." M.D. "When we were little, dad had an electric chair and we would want to drive it. We would clean it for him and argue over whose turn it was to go for a spin around the kitchen." Sartains "Dad doesn't let the chair slow him down. He likes to do things for himself but he's not afraid to ask for help." M.L. TIP: Give the children typical responsibilities i.e., helping with household chores. Ask for their assistance when you need it, but do not make your care their main responsibility. From their years of experience, here is some excellent advice to the children of parents with an SCI . . . and to those parents who have an SCI. To children whose parent has a spinal cord injury . . . . Reminders for Parents: What is clear from these interviews is that each child first saw a loving parent, not a person with a spinal cord injury. The wheelchair did not interfere with building a strong relationship between the parent and the child. There was a mutual love and respect between these parents and their children. |