A 10 year old with severe TBI as a result of Shaken Baby Syndrome
Hi, my name is David Ritterbeck. I am 53 years old and I live in Caldwell, Ohio. I am raising my grandson, my oldest son's child, Coleman, who is 10 years old. Coleman sustained a severe TBI at 11 weeks of age as a result of being shaken by his father. Coleman came to live with me when he was released from Nationwide Children's hospital at 13 weeks.
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I was told originally that Coleman would be blind because of the retinal hemorrhaging. I was also told that he would never eat, walk, talk, know anything, or be able to do anything for himself.
Nobody can prepare you for all the changes that come with caring for someone with a severe TBI. Those changes become more apparent as an infant matures into a toddler, a then a child as Coleman is now. Almost everything has changed in my life. However, my faith in God has grown.
I was married to my second wife when Coleman came to live with me, but my wife and I have since divorced. I quit my job at Detroit Diesel after 16 years to care for Coleman, but I am not alone. People are in and out of my house daily. This includes aides that help care for him, nurses, therapists, and case managers. Coleman is 100% dependent. He needs help dressing, eating, bathing, and with all other personal care tasks. As a result, I have very little privacy unless I leave my own home.
Coleman also has special equipment needs. He requires a wheelchair, lifts, ramps in the home and in the van. In addition, he has a gait trainer, which is like a walker, a standing frame, and an augmentative communication device.
Coleman attends our local public school, Caldwell Elementary and is in a multi-handicapped classroom. The school and I are growing with Coleman's needs and we discuss his needs at his IEP meetings. He has his own aide and I am thankful for all that school personnel have done.
Coleman is a miracle child! He can see, talk some, he drinks from a special cup with assistance, and he can eat pureed food with assistance. He also has some use of his right hand which allows him to use an augmentative communication device (the ECO-14) which gives him a voice. He shows many emotions and he loves to interact with people.
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Coleman loves to be out in the community. He loves to go to church, school, shopping, out to eat, square dancing, and 4-wheeler riding. Walmart is one of his favorite places and sometimes we go there just for an outing. He makes it very clear which aisles he wants to go down to check out the merchandise!
Although his functioning is limited, Coleman loves to interact with people. In addition we volunteer at our area Food Bank, he goes to Kid Church each week . He has friends there who help with his feeding when we have meals. I get to hang out in the kitchen and let him be on his own with his friends. I am pleased that Coleman has been embraced at school and at church and in our community.
In December Coleman participated in the Christmas program at school. There was a gym full of people. At the end of the program, the music teacher said, "Coleman has something to share." As he was pushed to the front of the stage in his wheelchair, you could have heard a pin drop. With his communication device programmed so that when Coleman pushed a button, he was able to close the program.
"Merry Christmas to all and to all and good night." As everyone clapped, Coleman was bowing in his wheelchair and I was sitting proudly in the audience feeling good that Coleman has a place in our community.
I do not know all that lies ahead. Coleman's needs are intensive, both at school and at home. Every other weekend Coleman goes to a local nursing home for respite. This gives me 48 hours in my home to myself and I have the chance to do whatever I choose. I think this alone time is very important for caregivers to have. It gives me a chance to enjoy life as a 53 year old grandpa. Caregivers need some time to enjoy their own life.
Someday I hope to be able to share Coleman's story to help prevent Shaken Baby Syndrome. I am also interested in helping people understand all the changes that occur in your life when you care for someone with a severe TBIâ€”no matter what causes the TBI. I've learned a lot about coping, about supports, and about taking care of yourself on a day to day basis.
I would also like to say that I don't think my son is some kind of a monster for what he has done, nor do I believe what he did was premeditated. I believe he was frustrated, he was impulsive, and did not think. He spent five years in prison for his actionsâ€”the maximum amount of time allowed.
Was that enough? I can't say. I think about prevention instead of punishment. I'd like see more education about Shaken Baby Syndrome. I would target two groups: high school students to inform them about the risks of impulsive actions. And I â€˜d like to talk to new parents in the hospital to help prepare them for that time after they've taken the baby home when they might be overtired and frustrated and do something impulsive with irreversible consequences.
If you would like to contact me, I have shared my home address and phone number with Donna Owens at OCALI (email@example.com) and given her permission to share it. I am interested and open to talk to anyone who wants to learn more about coping with severe TBI and about preventing Shaken Baby Syndrome.
Shaken Baby Syndrome - What's the Problem?
Shaken Baby Syndrome (SBS) is a severe form of physical child abuse. SBS may be caused from vigorously shaking an infant by the shoulders, arms, or legs. The "whiplash" effect can cause intracranial (within the brain) or intraocular (within the eyes) bleeding. Often there is no obvious external head trauma. Still, children with SBS may display some outward signs:
- Change in sleeping pattern or inability to be awakened
- Confused, restless, or agitated state
- Convulsions or seizures
- Loss of energy or motivation
- Slurred speech
- Uncontrollable crying
- Inability to be consoled
- Inability to nurse or eat
SBS can result in death, mental retardation or developmental delays, paralysis, severe motor dysfunction, spasticity, blindness, and seizures.
Children under one year of age are at highest risk, but Shaken Baby Syndrome has been reported in children up to five years of age. Shaking often occurs in response to a baby crying or having a toilet-training accident. The perpetrator tends to be male and is primarily the biological father or the mother's boyfriend or partner. Care-givers are responsible for about 9%-21% of cases.
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