Chapter 18, The Village

There is so much in Chapter 18!!

The author begins by talking about his and Julie’s parents, and the way that Schuyler helped them reconcile.  Both his mother and Julie’s parents were crazy about Schuyler and their love for her was “simple and huge.”  (And I would like to say this to him.  Once YOU have a grandchild, you will understand that the love that you have for that little person, transcends all.  It is not logical, and I don’t think it is something that can be explained adequately.)

Julie and Robert felt that they were “taking on” the school system to get the best services for Schuyler. They wanted the more advanced communication device options for her, and Margaret, the technology advisor, wanted to start with a simpler model.  The couple talked with the sales representative from Prentke-Romich, who allowed Robert to speak about some of his thoughts about Schuyler, specifically her cognitive ability.  She wanted to know if Robert thought there was a degree of “retardation.”   Robert’s careful response was that he thought she was capable of much more than the school gave her credit for.  He continues to think he and others have failed Schuyler.

When Robert told the school technology advisor about the meeting with the rep, she was rather offended that she had not been included.  Robert felt he was being “talked down to” during their conversation, and he tried hard to be diplomatic.

After speaking with a friend regarding the high prices for these devices, he was encouraged to enlist the help of his blog readers.  His friend was willing to help with the site, and “Schuyler’s Fund” was born!

Next, Margaret, along with Julie and Robert, met Holly, the sales rep from DynaVox.  Robert really felt that though the DynaVox seemed easy to use, the PRC device had a “much more robust language system, one that required the user to learn how to construct sentences and organize thoughts, not build pages.”  Margaret, who turned out to be an occupational therapist and NOT a speech therapist, continued her stance of recommending a simpler system, and even told them she would be submitting a request for the DynaVox MiniMo.  Margaret let the family know that it is the school’s legal responsibility to provide the device for Schuyler and that it would be a mistake to make that kind of investment without the support of the school.  Julie asked her if that meant that the school would not support the use of a more advanced device.  Margaret said the school would do what the parents wished, as long as it was within the guideline of the most recent IEP.

After a lot of “back and forth” about another evaluation, about the devices, the school system found an older, “loaner” device that was similar to the one the family wanted to order.  Getting that to explore took a backseat to some joyous news.  First of all, toilet training had all of a sudden become successful!!  And thanks to many, many wonderful readers over just 5 weeks, the fund raising page could be shut down!  The money had been received for the new device.

Pam Schmit@Wheatley

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6 thoughts on “Chapter 18, The Village

  1. Sarah Coty says:

    I read this chapter more as a school therapist than anything else. I could see both sides, frustration from the parents and the school system not being able to give them everything they wanted. At a therapist, we have so many budget constraints and it’s not possible to give everything to everyone. As a therapist, I was also a little mortified to think maybe some of my families don’t feel I do enough. I worry a lot, especially for my non verbal students that I am not doing enough. I think there was a lot of miscommunication and that just increased the parent’s frustration.

  2. Chelsea says:

    It’s difficult to be a school therapist when there are 50 IMPORTANT issues to address. As a parent, my child’s important issue is the only one I care about – and I know that is the case for most parents. I need to keep that in mind as a therapist.

  3. I worked in Seguin, TX from 2000 to 2005 and Austin was my regional center. I went to a lot of workshops there and I kind of assumed that the closer you were to Austin, the more advantages you had in terms of materials you could check out from the regional center, devices that could be borrowed, and the more access you had for consultation with low incidence cases, particularly autism. Schuyler’s situation so far is not what I would have expected.
    One consideration is that Texas is made up of “ISD”s or Independent school districts. It is not that unusual for there to be only one or two SLPs in a small ISD. In Seguin we had 6. I worked in San Antonio for one year and we had about 18, but San Antonio is made up of 7 ISDs. In both Seguin and San Antonio, we met regularly to discuss issues and we were free to discuss challenging cases. My point is, that maybe if there was only 1 SLP or even a few in this small district, maybe they didn’t have the resources or experience to deal with this low incidence case.
    My personal reflection is that even though I feel overwhelmed at times, my caseload is mine and I need to do my best for every student, even when it means going over the top to help them (which means TIME).

  4. Holly says:

    This chapter was encouraging. It was certainly interesting to read thinking as both a parent and a school based SLP. These are tough issues. I am looking forward to reading the next chapter to find out how Schuyler does with the higher level device. I love that he took a night to just “be” with his daughter enjoying her company. The fact that complete strangers chose to donate so that Schuyler could have a voice was amazing. And in 5 short weeks, the money was available for her parents to purchase a device that they believe is the key to communication for their child. I can feel the hope in the words of Robert. I, too, hope this will be a turning point for Schuyler and her family.

  5. Erin Ruppelt says:

    In this chapter I could feel the father’s frustration with funding and finding an AAC device that works with Schuyler. I thought it was wonderful that so many people pitched in to fund Schuyler’s device. All of this going on must have been a stressful time for the therapist as well as the parents/family.

  6. Marie Fisher says:

    This chapter made me reflect about the way I present information regarding AAC to parents in IEP meetings. I know that I am the specialist for communication but the parent is ultimately the specialist of their child and knows them better than anyone. I can totally see where the SLP and the parents are coming from so I am sure this case was a stressful one for everyone involved…

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