Hope I don't get sued.
I just finished reading a memoir called Schuyler's Monster by Robert Rummel-Hudson. Here is his blog: http://www.schuylersmonsterblog.com/ . Anyway, I just happened upon this book at B&N. Essentially, it is his story about his daughter and her "monster" : failure to develop speech and their subsequent battles to help her. It has been a powerful book for me to read. Not because there are any grand insights or conclusions. Rather, I have been moved by his honesty and humanity. He is flawed, his wife is flawed, they make mistakes... and yet they come together and fight for her. As much as she has a "monster" (as he calls it) and she is "broken", in his eyes she is so beautiful and strong.
This is not necessarily a gentle, feel-good book to read. He is blunt and honest about his feelings. He pulls no punches, uses no "safe" words. And that is ok... even though I might disagree with his take on some things, I completely understand his need for stark honesty. Being forthright and genuine is not a quality that is always appreciated... especially not in the tender-hearted world of special needs children... but I liked it. It was refreshing and sincere. And male... a voice not often heard in this area of the world.
My difficulty with the book was more personal. His daughter Schuyler (pronounced Skylar), when young, showed soooo many of the same characteristics as Jonathan it gave me the heeby-geebies. As the book got closer and closer to her MRI and the revealing of her "monster", I found myself getting more and more anxious. With Jonathan's MRI in less than a week, it felt really spooky. And when it was revealed (I won't give it away), I found myself feeling much less confident about what the outcome of our MRI will show.
Parenting a special needs child is a challenge that few people are truly prepared for. The uncertainties, the changes, the battles that have to be fought. They are unending. They can wear on the soul. And I think that the main challenge is the isolation one feels. Parents of typically-developing children can't really understand, and often the people most close to you are unable to be as supportive as you need. It can feel like you are completely on your own. A book like this helps because there is an instant understanding. I get him. And I would guess that he would get me. And for some strange reason, it helps.