Chapter 15

To begin, I will say that I anticipated commenting more on this book throughout our book study than I have thus far. I am absolutely enjoying reading about Schuyler’s journey but overall, it can feel strange to comment on personal, real-life events, despite the fact that her father chose to put Schuyler’s story out there. Although I am not a stranger to reading non-fiction, most of what I have discussed with other people in past high school and college English classes has largely been fiction. Has anyone else felt funny at times commenting on the true life events of Schuyler’s life?

 

I think a lot of my thoughts above come from the fact that our chapters from last week plus this chapter, Chapter 15, have made me really curious about Schuyler today in 2016. While I promise to not give anything away (no spoilers!), I will say that I spent some time this weekend reading more about Schuyler today. I am a fan of Instagram and found myself perusing her father’s public account (account name: rumhud). Although it felt a bit like skipping to the end of the book, I really enjoyed seeing pictures and video clips of Schuyler. I have more answers about Schuyler’s journey than I should at this point in the book and at this point in her life than her family did, however, I felt like I had to see that little girl we’ve been reading about and discussing.

 

Now, to summarize Chapter 15: Fighting Monsters with Rubber Swords. This chapter is about Schuyler’s visit to see Dr. Dobyns in Chicago. The family stayed with Erin, another friend met as a result of the father’s blog. I can only imagine how therapeutic his blog must have been at that time. At the appointment, they had to face Schuyler’s MRI scans again. Here, we learned that they were told that “sixty to seventy-five percent of Schuyler’s brain is profoundly malformed.” The doctor explained what this meant in terms of functioning and seemed to stress the importance of alternative means of communication. I like that it was finally mentioned that speech therapy should focus on “improving her comprehension and communicative understanding” versus verbalizing, however, I see that sign language continued to be discussed (as well as its limitations) with no mention still of pictures or a voice output device. When discussing Schuyler’s cognitive abilities, here they were told that they should “be ready for the possibility that she’s going to be under your care for the rest of her life” rather than the promise Yale supposedly gave them that Schuyler would one day “live independently.” All in all, this appointment/chapter absolutely brought more heartbreak (“One more string of medical terminology that, if translated, would just break our hearts a little more”), but I think it also did one of the things her father hoped for early in the chapter: “We wanted answers, not comfort”. After some thoughts on God and religion I thought this chapter ended beautifully. I love the imagery created by his descriptions of Schuyler and her mother in the airport. “That was it. She didn’t stumble, and she didn’t fall.” To me, this part seems foreshadowing of hope and a positive future.

 

I don’t know how public this blog is but if Schuyler and her father ever find their way here and read what we have been writing, I hope they realize the impact sharing their story has had. I appreciate my eyes being opened to a diagnosis I had never heard of prior to reading this book, one that can have such a profound impact on the reason we do what we do: communication.

 

-Candra Grether, SLP at The Phoenix School of Discovery and Jeffersontown High School

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Wordless Books

Seems like a contradiction, right? Books without words can be used in a multitude of ways. You can use them to have kiddos describe pictures, or as a visual prompt for a student to sequence a story. They are also great because they are easy to use with kiddos who cannot read. There are a vast array or wordless books available on Amazon.

Do you use wordless books in therapy? What type of activities do you use? Are there specific wordless books that you love?

Chapter 13 (Bug Fairy) and Chapter 14 (Note to Schuyler, Christmas 2004)

Chapter 13 starts out with “Halloween was always a strange day for Schuyler, or rather for me and my perception of her place in the world.” The author discusses how everyday was like Halloween for Schuyler because of her monster. This year, she dressed up a tiny little fairy (somewhat punkish J). He considered it the only night where Schuyler was disguised in a way, but wondered when it would finally come out that she’s not like all the other kids. Although Halloween night is supposed to be a fun and happy night, the dad was melancholy in a way because he started to see how she was beginning to realize that she’s not like all the other kids. I like how he mentioned “Schulyer was going to be a happy little girl regardless of how much I wept and fretted and tried to take all onto myself.” It seems to me that a lot of special needs children (like Schulyer, or children with Down Syndrome for example) are overall happy people. Although they have a disability, it’s not going to affect their attitude on life, they always are positive and bring joy to others in life. And I think the author is trying to make a point that it’s hard to accept that, but being reminded about the happiness his child holds give him a reminder. Any thoughts on that?

Chapter 14 is a letter that Dad wrote to Schulyer on Christmas of 2004. To me, it was a very emotional letter with lots of emotions-anger, hopefulness, and immense love. Two quotes stood out to me in this letter 1. “I only have one true wish in my life. Just one. I’d throw the rest away in an instant, I’d forgo any happiness in my own future if I could only have my one true wish, and that is for you to be happy.” 2. “I’d given anything for you, Schuyler, anything at all to make you happy and to fix what’s broken and to set you free in a world that you’re equipped to live in I’d burn down the whole world for you if it would change things.” These quotes show how much he loves his daughter and also how much he wishes thing were different. What do you think of the letter?

–Erin Ruppely, SLP at Kennedy Montessori/Central High School