Finding Neverland
Sunday Funday

I just received an email from another woman by the name of Alison.  She arrived at our story because she knows my parents, but I only know her from a phone call a couple of weeks ago. She had answered the request for people to sign up to sit with Vernon during Dialysis, and had inquired whether it was alright to bring along a friend of hers, who happened to be a Speech Therapist. They sat with him last Friday, and here is her feedback letter (to which was attached a very thorough and helpful Speech and Language Summary Report.)

Dear Allison,

I promised some more feedback, and here it is.  After adorning our lovely yellow gowns last Saturday morning – which really weren’t so bad – we took a seat and commenced to visit with Vernon, first by introducing ourselves, as you might imagine.  He was receptive and polite and did not seem one bit concerned that he didn’t know who we were or how we got there.  Meaning, who we were connected to that he MIGHT know, for example.  No matter. He’s got to be way used to this by now.  All good, except that after asking him a couple of questions both Lynne and I realized that we were having some trouble understanding him.  He knew it, too, so he began to pull himself toward us using the side of the chair and make precisely the same vocal response, only louder this time, as if we were hard of hearing.  This was a very reasonable assumption on his part, except that in reality our problem was related to our unfamiliarity with his speech pattern and enunciation, combined with his marvelous British accent!  I mean, I admit that as much as I adore Vernon’s and his countrypersons’ version of the English language, I’m not always sure I’m getting ANY Brit’s entire message because of our differences in word usage and pronunciation.  This was especially the case when Lynne and I had played and sang and appreciated a variety of music on my iPad, and then Vernon suddenly said he would like to hear a song by one of his favorite bands, told us the name a few times, and for the life of us we could not decipher what he was trying to say.  (In retrospect, one of the reasons for this was because we had never heard of them…)  After a series of attempts to get it, we didn’t, and we busied ourselves trying to come up with something either equally compelling to offer, or at least distracting.  Pretty soon Vernon asked for a paper and pencil.  I happened to have one and he eagerly seized it and began to write.  The name of the band?, I wondered.  Some random scribbling that would also be problematic to translate?  As challenging as it was to read what he had written, it was not impossible, and as he again uttered the name of the band it clicked:  Mott the Hoople.  Of course!  And the “of course” is not because we knew about them, but because that is what he had been saying all along!

Sometimes Vernon seemed physically uncomfortable, the way he was slumped down in the chair,  the continuous movement of his lower limbs at intervals – especially at first – the look on his face.  He never verified discomfort, however, when one or the other of us asked him if he was alreight.  He did not ask when he was being picked up, there was no concern expressed about going home, he did not require any sort of staff intervention for any reason, and if it could seem like a long two hours at moments, when it was all done it might as well have continued.  Except that Vernon was undoubtedly ready to get out of there.

Lynne was genuinely moved by Vernon’s personhood and his predicament.  She was also grateful to have been included in the opportunity to visit and she decided to contribute something by writing an informal Speech and Language report (attached).  She wondered aloud about a lot of things that I couldn’t answer, and she asked that I send her the link so she can donate.  I’m not sure where she stands regarding making additional visits, but I know for sure that she and I will be touching base about Vernon for the foreseeable future.

I’ll stop for now.  After I mention that the Sunday Funday blog entry was delightful.  Your comment about Vernon becoming tearful at times during the event helps me believe that he knows he is loved.

Gratefully,

Alison

I’m so thankful for this kind of feedback because each person that visits him sees something new, from a new set of eyes. Though I used to try to write with him, its been a long time, and I had forgotten that of course, he probably can write better now! I’ll be bringing a notepad for him next time I see him (though I do understand everything he says!) And Mott the Hoople!  Where did that come from?

I am still needing help with Vernon’s Dialysis times. We are hoping to get him to fewer days per week again, but for now, he is still doing five two-our sessions per week. At the moment, we have dates up through October. The last two weeks of October, we will be in special need of help, as my parents (who help me out a lot with babysitting as well as dialysis sessions) will be out of town. If you want to help, please sign up HERE.  Thank you so much!

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Finding Neverland
Sunday Funday