Chapter 12

In chapter 12, the family is now living in Austin.  Robert describes the kids in Austin as “different” and accepting of Schuyler and her monster.

Robert and Julie began preparing for the start of school, which means an upcoming IEP.  Two things Robert pointed out were that the teachers and support staff cared greatly for Schuyler.  Second, that he and Julie felt that they needed to take the lead and guide the staff on Schuyler’s particular needs.  The two main focuses for the upcoming school year were communication and toileting. The SLP servicing Schuyler had concerns recommending more sign language, particularly the Sign Exact English that Schuyler uses. The SLP is unfamiliar with sign language but the district offered to provide her training in the method that Schuyler was successful in.  I had many questions while Robert was discussing the IEP: “Has Schuyler been introduced to pictures?” “Have they presented any form of an AAC device?” While signing is a great way for an individual to have his or her needs met, not everyone understands sign, especially if a student uses sign approximations.  I have had success with many students who are nonverbal that use sign along with pictures or even a low or high tech device to communicate.

At the end of the chapter, Robert stated that despite all the challenges, the good days and the bad days, that “hope” might be enough for Schuyler to speak. Robert emailed Dr. Williams Dobyns regarding Schuyler’s condition and in hopes for any direction in her care. Dr. Dobyns responded, stating that he would need to see Schuyler in his office… in Chicago. This would be nearly impossible for the family due to the high cost. Robert blogged about his exchanges with Dr. Dobyns.  The next day Robert checked his email and found nearly 900 hundred dollars had been donated on Schuyler’s behalf. He then realized how important Schuyler is, not only to himself and Julie but to many people around the world.  They called the next morning and planned to travel to Chicago in January.

–Kim Campbell, SLP at Stonestreet,

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9 thoughts on “Chapter 12

  1. Darcy Lanham says:

    I have been wondering also why pictures or a AAC device hasn’t been tried. From what I know, it seems like Schuyler has the cognitive ability to be successful with some kind of AAC. I also wonder about her receptive skills. Robert hasn’t given us much information about her ability to understand what is said to her.

  2. Melanie says:

    It is refreshing to read that the staff at Schuyler’s school is pushing for her to succeed and learn to communicate even though no one really knows the best plan.

    I feel like it is going to be a lot of trial and error to find the best means of communication for Schuyler, just as it is always can be with kids, especially when the children are nonverbal.

    It is also exciting to read how Robert’s followers on the blog initiated a paypal account to help fund a trip to see the specialist in Chicago. It is reaffirming to know there are many people in the world who care about others.

    Robert continues to demonstrate he is a great father and I think he continues to surprise himself and the strength and love he possesses as Schuyler’s father.

  3. Jane Stosberg says:

    I wish I could have been a fly on the wall at this IEP meeting to witness how the discussion about modes of communication actually went. Did the SLP explain her reluctance to use sign with the reasons Kim shared (limited fine motor skills and difficulty generalizing use of sign with the hearing public) or was it truly that she just didn’t want to learn sign herself?
    This chapter confirms what so many SLPs experience daily in our jobs- we are expected to do and know so many different skills. Communication is such a vast world after all. And this is what makes our profession both exciting and overwhelming.

    • Sarah Coty says:

      Yes! I agree. I felt disappointed but then also wondered about the other side of the story. I feel like there are always 2 sides for sure.

  4. Kim Raho says:

    I have been thinking the same thing for CHAPTERS (years)…no one has brought up pictures for a mode of functional communication?!?!? She seems to be a prime candidate for it with average intelligence and good receptive language skills. The thing I always tell people about sign language (unless in the deaf community)….no one else understands it. Here is my usual SBARC story for parents of nonverbal students….”If she went to McDonalds and signed chicken nuggets, fries, and a coke….would the counter person understand? Would they if they had a picture board with these pictures and she pointed to them?”

  5. Karen says:

    Yes, yes, yes, and yes to all of your comments above. It makes me wonder if this SLP was not really sure what to do. How basic is it to create a simple picture board to assist with choice making. What was being worked on in speech therapy?????? Verbal skills for a non-verbal student. I am sad to say that I have received verbal goals for a non-verbal, trached kiddo. Sometimes I have to ask myself what are people/SLPs thinking?

  6. Rachel Lacap says:

    This chapter had me wondering even more at Schuyler’s receptive language skills. I think the author has really only hinted at some receptive language delays….and he mainly attributed them to “Schuyler not being interested” in the topic or activity. I just wonder if her receptive language skills were good, why they had not thought to use AAC before…..

  7. Candra Grether says:

    I cringed reading the part about the speech portion of Schuyler’s IEP meeting. I quickly had to remind myself that I wasn’t there and that we are only hearing one person’s point of view. I wonder if Schuyler’s previous SLPs have read this book and if so, what do they think? Like everyone else, I also wonder if AAC was discussed at this point. I also wonder the duration/frequency of Schuyler’s speech services at this time.

  8. Lindsey Nicklies (Noonan) says:

    This chapter brought tears to my eyes. It was so incredible seeing how so many strangers can be caring an compassionate. This restored by faith in people after the crazy grocery store lady!

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