Just recently my oldest son was injured playing soccer and required hospitalization. He injured himself playing on the Special Stars team for individuals with Autism. I only tell you this as it plays a key part in the story. Otherwise it wouldn’t matter what type of league it was. But for this story it does matter.
When the ambulance attendants came (after almost 2 hours – totally a different story) they asked about medications and medical conditions. I told them all his medications and that he has Autism, Intellectual disability and Bipolar disorder. He has more but these seemed key to the circumstances. Even as I said Intellectual disability I felt guilty – I hate the term, it used to be Developmental Disability which I liked a lot more. However, I digress.
So the ambulance took him to the hospital and I followed in my car. Once there we were asked again by the triage nurse and I told her all his medications and again his three diagnosis. After it was determined he had indeed fractured and dislocated his ankle the physician came in and while she knew what medications he was on she asked me again why he was taking such medications. By this time he had only had a small dose of pain pills and I wasn’t sure how much he was hearing but I began to feel self conscious and guilty. Was it my place to share his medical history, was it necessary to pull the “disability card” and continuously share his personal information? But I also told myself that it was important for the decision makers to know about his unique needs.
By the time we were jostled from the surgical floor to Pediatrics (even though he is 18 years old) I was tired of telling his information to each new person who entered the room. But I had to be his advocate as he kept getting forgotten for pain medication, mistakenly forced to have 2 blood draws before I put an end to it when they tried to do a third and looked over for surgery for 3 days. Each day he was placed on the wait list for surgery and he was denied anything by mouth all day because he could get pulled into surgery at any time. All day he laid there, in pain and a dry mouth (the medication he is on makes you very thirsty) and not able to eat or drink anything. The nurses kept coming to me and saying “It’s ok if he misses his medication, right?” and I would have to say “No, he needs his meds to stay on track” but he still missed them a couple of times because they were sure he was going to go to “surgery any minute now”. On day 3, in between morphine doses he became coherent enough to tell the nurse that if they didn’t do surgery he would get a gun and shoot everyone. Of course he didn’t mean it. It was in his unique way, however inappropriate, to tell them he had enough waiting around in pain. The nurse got very upset and lectured him that if he says such things she would have to report him to security. Again I pondered, do I remind her of his autism? I decided to do so – I reminded my son not to talk like that and then turned to the nurse and said “that is his Autism and his immense pain talking, he doesn’t mean anything other than to tell you he wants the pain to stop”. Her response “Oh I didn’t know he had Autism”.
We really need the people working with our children to read their files. If I hadn’t been with my son who knows how long it would have taken for the surgery, how many doses of medication he would have missed, how many vials of blood would have been taken from his difficult to get veins. Please just read the files. Stop asking me to tell my son’s story over and over. If you are not going to read the files why have them in the first place? As for sharing his information, I still don’t know how I feel about it. I have always taught my son to be proud of who he is including his Autism, BiPolar and Intellectual Disability. We speak about them openly and with pride. But he also has the right to keep that information to himself should he choose not to share. It’s his story to tell, not mine but he has reassured me that how I acted those 3 days was helpful to him and that I handled it all well. Let’s hope we never have to go through it again.