I regularly spend time treading water, both literally and figuratively. While my son is in school I try to exercise in the SpoFit (http://www.spofit.org) pool. It is my opportunity to workout while relaxing; kind of like golf but without the desire to throw my clubs before the 19th hole. Often my pool time also includes a conversation. My fellow SpoFitters are some of the most interesting people I've had the privilege of meeting. Each of them, including staffers, has their own amazing story.
As I tread water, I also enjoy observing those around me. One of the SpoFit lifeguards is deaf. While it challenging for us to engage in deep conversations when I'm in the water (I can't get close enough to properly understand her pronunciations), I've learned much watching her do her job. Until I met her, it never occured to me that seeing, not hearing (drowning is a silent killer) is most important to a lifeguard. She sees everything and pays attention to even the slightest movements. She knows where everyone in her aquatics area is at all times and exactly what they are doing each moment. In many ways, I think (her boss agrees) we're safest when she is on duty. I always make sure we make eye contact before I enter the pool because she can't hear the locker room door. When I exit the building on my way to the parking lot I look for her on the other side of the fence and make sure I smile and wave big so she knows how much her work means to me and, because, she is my friend. While these accommodations are very minor for me, they make it easier for her to do her job.
The past 5 months we've spent too much time at the hospital and in doctors' offices. My son the medical zebra is a riddle wrapped in a mystery inside an enigma. Since his birth when we returned him to the hospital 24 hours after his discharge, he has been a challenge for doctors to treat. Unfortunately, during the past decade too many doctors blamed his pain on "autism" and dismissed his pain rather than making reasonable accommodations for him so they could give him much needed proper diagnosis and treatment. His intense head pain was dismissed for 9 years because he can't say, "My head hurts." He threw up for the past 4 months at least 3 times a week (for a month it was every day even while on Zofran) yet he wasn't given the GI consult we requested (not even when he was inpatient twice). A few weeks ago I filed a complaint with several Federal and State agencies asking them to investigate that the hospital discriminated against my son because he has autism and because the hospital would only make reasonable accommodations for him based upon staff convenience and immediate availability rather than pre-arranging reasonable accommodations based upon his needs. We're hoping that will change especially since I cold called the hospital risk management department (yes, sadly I still needed to make the call after I filed my complaint). My son had an outpatient procedure done and thanks to the intervention of risk management, reasonable accommodations were pre-arranged. He did amazing! Funny how that works.
Unfortunately it looks like this is just the beginning. My son has been diagnosed with a few conditions that can't be blamed on "autism" (although they don't yet know the underlying cause) and he requires follow up medical care in several of the hospital outpatient clinics. Reasonable accommodations aren't rocket science. They just require that people imagine someone else's point of view. I have the risk management department number in my cell phone because I realize that some of us have better imaginations than others. I also understand that some medical providers are better than others at working together to provide their patients with comprehensive, coordinated care. However, they now have no choice. Trust me, things will change and my son will get the comprehensive, coordinated high quality care promised by the hospital marketing materials. I promise that I am either going to be their best friend or their worst nightmare.
