UCLA is unaware of the role they played in upsetting James. The only thing they know is that they can't deal with James when he is in pain and stressed beyond his limits.
UCLA kept sending James to the ER, knowing that testing for a urinary infection/painful crystals in the urine can take from four to six hours or longer, which is very stressful for an autistic person. Time and time again, the ERs have found infections that UCLA did not find. The danger of using ERs for primary care are that James will be given a sedative that he has serious bad reactions to. He cannot take Ativan. It causes him to have to wear diapers, to bleed in the urine and to cry non-stop in pain. It does NOT calm him down, it increases his pain.
In a recent ER visit that UCLA sent James to, the doctor believed James' reaction might be "ATIVAN SPECIFIC" and so he used VALIUM to help James cope with having to wait in the ER for hours until the test results came in. James had a horrific reaction to the VALIUM. He cannot take benzodiazepines without immediately losing control of his bladder, blood in urine and extreme agitation that seems related to the bladder pain getting worse. He has fainted many times after being given ATIVAN and has passed blood shortly after fainting.
UCLA has been aware that James has been bedridden a great deal since October 2015, often three weeks out of each month. Testing for what might be causing this has been unusually slow, to the extent that many people have asked why UCLA is moving so slow to rule out abdominal problems.
The more times UCLA sent James to the ERs to detect infections their labs for some reason never detected, the more the risk of James being given sedative that he cannot tolerate increased. When that finally happened, UCLA responded by completely abandoning James instead of acknowledging their role. James was howling in pain at the time UCLA decided not to see him anymore.
Earlier this year Dr. Bill Dorfman dropped James as a patient as we were on the freeway headed in for a scheduled cleaning. Suzie at his office was the only one who was able to clean James' teeth without sedatives. That loss was devastating. I am having trouble borrowing the $54,000 to repair James' teeth that were destroyed by medications given to James by doctors. Dr. Dorfman was keeping decay at bay while I struggled to get the loan. Unfortunately, OCWEN keeps destroying my credit score in spite of my six year perfect payment history and is being investigated by the CFPB and the Attorney General for this ongoing disruption and unjust financial crippling of our lives.
To have James' doctors turn on him at a time when he needed them most is unfortunate but perhaps will save his life. The doctors who abandoned him were not moving in a timely manner to find out why he was so often fatigued and in pain.
Sometimes upheaval is good. I have no plans to sue UCLA or anyone who thinks James belongs chained to the wall of a dungeon because of his response to benzodiazepines. My only motive in writing this is to educate and clear a path for healing for James. People who do not want to help James need to get out of the way and make room for people who can and will help. There are UCLA nurses and assistants who try to offer a coloring book to an autistic person experiencing a painful bad reaction to Valium. They refuse to recognize they are part of the problem. You would not offer a coloring book to a person who just experienced a car wreck or was having a heart attack. People who are having extreme bladder pain exacerbated by valium do not want to sit down and color in a coloring book. They are crawling out of their skin in pain.
Autistic people screaming in pain also do not want to answer questions they cannot and do not know how to answer. They do not want to engage in small talk. I told UCLA nurses that talking to James makes him scream. He can't handle it when he is trying to manage pain. I have had nurses tell me, "I don't mind...." and they continue to upset James. They think I am telling them I am worried that James' screaming will bother THEM. I am telling them to please stop upsetting James.
When a nurse tells me that she does not mind if she makes James scream louder, I try to politely tell her to leave the room. I try to tell the doctor on call that they are CREATING a problem.
The UCLA staff looked like deer in headlights, totally clueless that they were creating a situation. James knocked a jar of cotton balls off the counter and that was it. All his UCLA doctors canceled all his future appointments, his cancer screening for his bowel that they had managed not to do since October 2016 was canceled. That jar of cotton balls was the last straw.
I was able to get James a diaper prescription without UCLA's help. Dr. Curls did give James a painkiller, after the days of pain without help, but it was too late, her peers already condemned and banished James from all the UCLA offices.
Cotton ball jars at UCLA are safe now. James may have cancer of the bowel or another condition directly related to years of being given too much ATIVAN....but what matters is that the cotton ball jars in all the UCLA offices are safe now.
James has been resting comfortably at the hotel where we are staying while the insurance company removes the mold from our home. The hotel does not think James is the monster UCLA is making him out to be because of a cotton ball jar being knocked over after an idiot tried to get James to color in a coloring book while he was obviously in pain. She let me know she didn't mind if she made him scream louder.
UCLA doesn't get low functioning autism. They like high functioning autistics. Their response to a low functioning autistic is not acceptance. Their response is to try to make mom feel bad for not trying to turn a 32 year old autistic young man into something he will never be, the high functioning autistic UCLA prefers. It is exactly like being mean to a man who has lost a leg and telling him and his mom he ought to be able to grow a new leg, that they are just not trying hard enough.
It is unreasonable to ignore James' very real health problems and focus on changing what cannot be changed. It upsets me and it upsets James when doctors ignore a bladder infection and insist James should have yet another round of behaviour mod therapy. I paid UCLA $2,500 a month for about two years in the 1980's for intense behaviour modification. It got James out of diapers, which some said would never happen. This recent mismanagement of his health care has regressed James back in diapers with a painful bladder problem. UCLA could use some behaviour modification.
I have had young UCLA doctors say to my face that they wished James was higher functioning. It is probably a blessing in disguise that they no longer want to treat James. We will probably make progress now and James will flourish instead of languishing in a painful limbo.
I don't want to hear excuses or justifications from UCLA. I was there. I saw the bad choices and delays and over use of the ER.
Meanwhile, I do think UCLA should look into the fact that on many occasions their labs failed to detect infections that ER labs did detect. Maybe the long distance of the lab is ruining the samples? It has happened enough times to be a concern.
I have written this so I do not have to explain myself to various departments of UCLA that may ask me to tell my side of this unfortunate situation. I have to focus on moving forward and getting James to health and safety. I only have the energy to spare to tell UCLA once what they did wrong: They ADDED to James' stress then complained he was too stressed. They took too long to respond to his fatigue and pain that became serious in October 2015. UCLA allowed James to experience long periods of agonizing pain that they would not normally let a non-autistic person suffer. They exposed him to more stress by sending him to experience HOURS the ER for urine tests that they should have been able to do in a few minute in the office. The accuracy of their urine tests is suspect due to the number of times infection was found in the ERs but not via UCLA tests.
Bottom line, simple language: UCLA stressed the hell out of James and then dropped him because he was too stressed for them to deal with. While UCLA dumped James, just like Dr. Dorfman did, in this society where health care is becoming snooty like a posh restaurant, for the record, James deserved and deserves better care than UCLA was providing him.
Best wishes UCLA. I have to go about the business of getting James back to wellness. I refuse to take any unnecessary detours that could cost him his life or his quality of life.
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