Tuesday, April 08, 2008

Schuyler's Monster

When I was in high school, I knew I wanted to work in some capacity with children and families. I volunteered every summer at New Orleans's Children's Hospital with the Child Life Department. I took children well enough to leave their beds to the group music/play therapy sessions in the playrooms and assisted the Child Life Specialist with the sessions. I also cuddled/rocked babies and visited with children too sick/incapacitated to leave their beds.

When I was studying Family, Child, and Consumer Sciences at Louisiana State University, I thought about earning a masters degree in social work. However, fate intervened with a part time job with the East Baton Rouge Parish Library, and instead of earning a MSW, I went for a MLIS. And here I am.

However, much of my nonfiction (adult) reading centers around issues involving families, children, human development, education, etc. Therefore, when I heard about Schuyler's Monster, I immediately knew it was something I wanted to read.

Although the onset of verbal communication varies from child to child, it is expected that an 18 month old will make attempts at communication, even though the words might not be clear. Schuyler, at 18 months, was making no attempt. A battery of tests, from hearing to cognitive, were administrated, but a vague diagnosis of PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified-this is a diagnosis commonly given to someone who doesn't meet the full criteria of an autism diagnosis, but exhibits enough symptoms as to not be NT, or neurotypical) was not satisfactory.

Finally, an MRI confirmed a diagnosis of bilateral perislyvian polymicrogyria, an extremely rare neurological condition that affects a person's speech, motor control, and can lead to grand mal seizures serious enough to cause permanent brain damage or even death. 60% of Schuyler's brain was affected. She would not be able to verbally communicate (although she was not silent).

Schuyler's Monster is the heartbreaking, inspirational, and at times, witty account of a family struggling to help Schuyler overcome her obstacles. Schuyler is a bright, determined, and amazing little girl; I know this will already be one of my top reads for 2008.

Robert Rummel-Hudson continues to write about Schuyler's progress on his blog. Click here for a post about an article that ran in the Dallas Morning News. The link to the article includes a video of Schuyler in action.

Did you know that books have trailers? Yes indeedy, and some of them are quite nice. This is a lovely one for Schuyler's Monster:

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