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.