Working with a Blind Infant


In my last post, I recounted the early efforts of Donna and Juan Castillo to help their newborn son Johnny, who was born without eyes, to adjust to the world. My account is based on what Donna herself was telling the court in the first days of the trial, where I represented her and her family against DuPont, whose fungicide had, we believed, caused this serious birth defect in Johnny Castillo.

 

Here I continue my narrative of the difficulties a child born without eyes faces, and the Castillos’ efforts to help their son to grow.

 

A blind child has no reason to want to crawl. Sighted infants’ motivation is usually to move toward something they see. For a blind child to want to crawl, you must encourage that child with the sound of an object he likes to reach for, or with his mother’s voice, of course.

 

To get him to crawl, Donna also had to help Johnny strengthen his head, chin, and neck muscles. Because sight wasn’t what was guiding his movement, he had no reason to want to pick up his head. Instead, his inclination was to slide it along the carpeting in their home. It was up to Donna to teach him how to lift his head so he could actually move forward. While Donna had no special training in any of this, the Dade County Public School system did provide therapists who came to the Castillo home shortly after Johnny was born to give the family some tips on how to begin educating him. This was incredibly helpful, especially since the family was not financially able to pay for help on their own.

 

To help a blind child progress from crawling to walking requires a great deal of trust.

 

It is a scary-enough thing to balance oneself without holding on to anything or anyone, but it is especially scary for a blind child. He needs to be old enough to focus his mind and understand directions—left, right, up, down—which makes learning to walk a very big deal for a blind child.

 

At the time we were discussing his story in court, Johnny was learning to walk with the assistance of a cane, but he was struggling with it. While he was comfortable in his own environment at home, stairs, corners, and the kitchen counter were still obstacles he had to contend with on a daily basis because he would forget they were there. Walking with the aid of a guide dog was a possibility, but that couldn’t happen until he was at least 16 years old, according to a psychologist the Castillos spoke with shortly after John was born.

 

At the time, he could feed himself only finger food, was unable to bathe himself, and couldn’t go to the bathroom without assistance. He was completely dependent on his parents. He had also come to a place in his young life where he realized he was different, that he had no eyes, and that this was the reason he was always in the dark.

 

As a parent, Donna Castillo had struggled with guilt.

 

She didn’t ask for Johnny to have a life like this. She had a very difficult time dealing with her grief over the damage that was done to her son.

 

She was not the same person she once was, and couldn’t be the kind of parent to her daughter, Adrianna, she had hoped to be because of the demands placed on her by the family’s situation. Adrianna had been through a lot, too. She had two parents who were exhausted, sleep-deprived, depressed, and grieving as they tried to deal with her brother’s challenges the best they could.

 

Donna Castillo spent the bulk of her days and nights caring for her son, worrying about his every move. She was concerned about how she was going to take care of him. She worried, too, about who would assume that caregiving role after she died someday.

 

She was constantly focused on Johnny’s needs, placing them over her own, and above the rest of the family’s as well. The physical and emotional toll had been immeasurable on all of the Castillos, but Donna seemed to carry a greater burden of the sort of guilt only a mother could understand.

 

In my next post, I recount the cross-examination of Donna Castillo by opposing counsel.

 

I’d love to hear from you, and your experiences knowing or working with handicapped children. What were the particular burdens you observed or felt – as well as the rewards? Thank you for sharing.

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