Schuyler's Monster--A Father Shares His Parenting Journey

Bilateral perislvian polymicropgyria.

That's the diagnosis that Robert Rummel-Hudson and his wife, Julie, received after two years of trying to figure out why their three-year-old daughter couldn't talk.  They learned that this rare, neurological disorder, caused by a malformation in the brain, was the reason why their daughter Schuyler (pronounced sky-ler) wasn't chattering away like other kids her age.

Robert, an online author since 1995, created a blog, Fighting Monsters with Rubber Swords, where he shares a snapshot of life with his daughter.  In some of his posts, he refers to his daughter as "broken," and the term has sparked fiesty comments.  I had a very hard time with this term when I came across it on his blog, and it sparked anger in me--how dare you describe a child as "broken?"

I remember back when my oldest child was about six, he was describing his hearing loss and said, "my ears are broken."  Ok, I could agree with that, especially since he was born with hearing in the normal range that suddenly disappeared one day. I can understand referrering to Schuyler's brain as being broken, but to call a child a "broken child" is something I can't wrap myself around.

Robert is a staunch advocate for his daughter and he's a very involved father.  He sat down to write what he calls "a love letter to my daughter" and turned it into a book, Schuyler's Monster, which has gotten many nice reviews. 

I recently finished the book and I have to say, it is a very engaging read.  Robert writes in a style that pulls the reader right in and you can't help but fall in love with his impish daughter as well.  As a parent who has dealt with the special education system three times over, I could relate to the process of having to fight for communication needs.  Robert and his wife, Julie went through a fight with their district to get an augmentive communication device for Schuyler.  Robert has a post with advice on advocating for your child: Schuyler's Monster, Advocacy.

This whole parenting a child with a disability thing is a journey, and Robert certainly doesn't sugar-coat the journey in his blog or his book-- he shares the hard feelings as well as the triumphs.