Thank you so much for having me, Miggy. My name is Jessica; I am a wife, mother to 2 boys, and a daughter of the King. My brother, Steven, has cerebral palsy, epilepsy, and severe brain damage as a result of trauma during a careless delivery. Steven has a child like mentality and needs help with all the basics: eating, bathing, dressing.  A basic way to describe his mental understanding is he can write, but he can’t spell or read.  He can just barely write his name, but most can’t read it. He can follow simple directions. Emotionally, he is generally mild mannered but has a violent temper, and has no real understanding of emotions or how to control them. Physically, Steven has tonic-clonic (formerly called grad mal) and absence seizures, even with medication. His limbs turn in, he drags his right leg, and he is bent forward. He can speak and has good grasp on language. While he has had his disabilities since birth, Steven has declined rapidly in the past few years compared to the first 40.  He currently resides in an assisted living facility but my mother, who is 70, is still his primary care
giver. She has recently started including/training me in the many, many areas of his care from managing his medications to reporting to the judge on how he spends his SSI money.

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Miggy:  Jessica, thank you so much for participating in my spotlight series. Today we’re talking about your brother who has cerebral palsy, epilepsy, and severe brain damage. I’m always glad to have a different perspective in our spotlight series, especially that of a sibling. You mentioned that your brother has cerebral palsy caused at birth by a careless delivery. Can you briefly share that story with us? What happened and how quickly did your parents realize your brother was going to have life long complications?  

Jessica:  My brother was born in 1968, and according to my mother–whom I consider the authority on the matter–the doctor was drunk. Steven was born with the aid of forceps, common then and not unheard of now, but his head was squished. He had large, red and purple bruises on his head. Yet he was breathing unassisted, eating and had a normal heart rate; the doctor told my mother not to worry.  He was diagnosed with cerebral palsy at about 6 months old. The pediatrician then told my parents Steven would never walk, talk, etc., and recommended he be “institutionalized.” That doctor did not know my mother! That was not happening. But it was literally years before they knew the full extent of his injuries and what the complications would be. There was no indication of any problems during the pregnancy, my parents received no explanation and were offered little support from the medical community.
 
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