05/18/2023
It’s okay to try new providers until you find someone who wants to help your child live his or her best life! Hang in there, moms and dads!
Tatty: When we have a hospital appointment the stress grows in the lead up. I can no longer go without Mark because I cannot support George on my own. And the success of the appointment itself depends on the consultant and staff who deal with George. We have seen the very worst and the very best. A few years ago, at audiology, I sadly witnessed the worst, where George was seen as uncooperative and impossible to test. The audiologist literally told us she couldn’t do anything, couldn’t perform her standard tests and that we could go home. She made me feel like George had failed somehow. Like he was too different. I cried when we got back in the car. But I also got a little stronger. Lucky that I have always known George can hear perfectly well. But we have also seen the very best. Many times. I remember once seeing his consultant at Kingston Hospital, who happened to be bald. George inadvertently scratched the top of his head while feeling it, managed to break his blind while playing with it and empty an entire packet of pom bears on the sofa and floor, crushing them in the process. All this in one appointment. That was a real mama-fail, but how do you have a serious conversation while running around chasing your son in a consulting room?? He was such a lovely man and carried on as if it was the best appointment ever. And when I left and was standing at reception to make a follow-up appointment, I saw him rushing about with a dustpan and brush to clear up before the next patient. He’ll never know what a difference he made that day. And there was another stand out appointment - a wonderful woman at his ophthalmology appointment who carried out half the test on the floor under her desk and the other half on the window ledge, because that’s where George needed to sit. She was calm and let George lead. She adjusted the tests when they didn’t work, never passed judgment and I loved her for it!
And actually George wasn’t being uncooperative at audiology he was communicating his stress, anxiety and confusion. I wish all professionals understood that. Our kids don’t always fit the common mould the success of the standard tests are dependent on. I also wish I had understood that better at the time and had said something meaningful! Instead I was pretty traumatised as was my boy. We never returned to audiology. But that’s because he can hear the quietest crinkle of a biscuit wrapper at 50 paces!!!! 😜🍫🍬
