Rich has been working in Manhattan this week and returns late this evening. Thank God! My mom came up to stay for 2 days and we had so much fun. Then a very dear friend spent the day with Ethan and I while we drove 3 hours each way to sit in waiting rooms and doctors offices. That trip is always exhausting, but having a fun companion along makes a huge difference.
Mom got to witness the ineptitude that we deal with regularly living in a small town while trying to get Ethan’s needs met. It is getting beyond frustrating. The clinic where he attends weekly aural rehabilitation took him off the schedule for the remainder of the quarter, which ends Thanksgiving and doesn’t start again until January. I had told them we’d take the week of surgery off and see them the following week and that somehow translated into no therapy for the next 8 weeks. And this is a university. A place that should see Ethan’s case as an extraordinary opportunity, it is a teaching clinic after all. I have been uncharacteristically quiet about sharing my opinions about this place, but I’ve reached a new level of disbelief this week. It’s a rinky-dink dog and pony show over there masking itself as some sort of learning community. And do you think anyone took responsibility or apologized for the failure?
While we were at the hospital Wednesday I decided to have Ethan’s frames adjusted as they have been smashing his face and looking terribly uncomfortable. The technician took them into a back room and moments later came out and informed me in a very casual manner that they had broken. Oh well. It took several minutes of me asking questions to clarify what had just happened and what the next steps were. Just as it happened at the clinic the day before, I spent several minutes engaged in handholding people through doing their jobs. It’s surreal to be your child’s advocate while simultaneously being your own customer service rep. I had no choice but to buy a new pair for him since it takes our local shop 2-3 weeks to get the same frames delivered. He gave us a 50% discount, so I saved $100. There should be a sign on the door proclaiming “Frames adjusted at your own risk!”
I was reminded this week that I need to take care of myself once in awhile. I let all sorts of stress get to me and I tend to internalize. Maybe turning it into blog fodder will help a little, but I think some exercise and yoga are in order here.
Edited to add:
I want to give props to the students at the university clinic where Ethan has attended therapy for the past year. The students have been so open minded and easy to work with. Ethan has also had a phenomenal supervisor of students in the past, but she is currently on maternity leave.