In lieu of an abstract, here is a brief excerpt of the content:Parenting Children With Autism Spectrum Disorders Through the Transition to AdulthoodAnonymous One, Anonymous Two, Lorri Centineo, Anonymous Three, Virginia Clapp, Catherine Cornell, Nancy Coughlin, David McDonald, Mark Osteen, Laura Shumaker, Julie Van der Poel, Anonymous FourMy Son's Life with Autistic Spectrum DisorderAnonymous OneThis is the story of how my son, David, has tried to become independent. David is now 25–years–old. His immediate family is his dad, a brother (age (...) 22) and myself (his mother). He was diagnosed with an autism spectrum disorder (ASD) when he was 13. We looked up all the information and decided not to make a big deal of it. Looking back, he displayed all the classic signs of a high functioning autistic disorder. Would he have been diagnosed with the new DSM 5 guidelines? He probably would have. His life would be much, much different if he had been diagnosed at an early age.I'll start with David at age 13 when he was able to harness his big interest in computer science into a career for himself. He was expelled from middle school for threatening some kid that had been picking on him all year. He had a meltdown and wasn't able to communicate his side of the story and that was it.During the summer of that year he took classes in computer engineering (Microsoft) and became an engineer when he was 13. At that time it was quite an accomplishment because he was the youngest person in the United States to do so at such a young age. (By the way, the administration of the school that expelled him sent him a congratulatory card when he was written up in the paper).His father and uncle are in business running a computer company so David had a ready–made job waiting for him when he graduated from high school and was able to keep it during difficult times. David finished high school (mainstreamed special education as emotionally disturbed) and he also received another engineering certification (Cisco).I have to mention here that I truly did not understand what it was like for my son until one day when he was in high school, as I was lecturing him again for some stupid reason, he said, "You don't know how hard it is for me to not sit in a corner and rock every day." Think about that. ASD individuals get up and keep going every day when they know they are going to be misunderstood and picked on. They all deserve a medal for bravery.David became really upset that he had never had a date and that girls were not even interested in talking to him. He started cutting himself and shaving his head. That got him some attention from the stoner group. He had someone to sit with at lunch anyhow. Parents, I think it's better to have no friends than the wrong friends. They introduced him to drugs.We did not mention any trouble David was having to any relatives. We had lived 800 miles from our families in a very unspoiled part of northern America. In hindsight this was not good either. [End Page 151]Another thing, and I think every parent will agree with this—teachers, school staff, health care industry staff, doctors and every one that comes into contact with an ASD individual—take the time to get to know them. It may be difficult and some may appear non–caring and rude. You must overlook this and look to the person underneath. They are great people. They have been through stuff and it means so much to them. Like I said—parents, you know this. Please remember it when times get tough.During David's senior year he started work release so he could start earning money to buy a car and move out as soon as he turned 18. Things were made easy for David since the company was owned by his father and his uncle and I worked there also. David enjoyed the work but had the occasional meltdown and had difficulties fitting in with other employees. He wasn't able to communicate... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Narrative SymposiumPersonal Narratives Experiences of Psychiatric HospitalizationV. Barnard, J. Carson, Eugene Doe, Robin Driben, Anonymous One, Anonymous Two, Charles Kelley, Michael Kerins, D. Millman, Anonymous Three, Viesia Novosielski, Ben Zion, and Anonymous Four• Dreaming: A Recovery Story• The Intervention of the Demon• Bent but Not Broken• Tortured Souls Do Not Rest• Homesick• A Professional Patient No More• My Spiritual Journey• Personal Account of Psychiatric Hospitalization• Psychiatric Hospitalization Story• As (...) Ice Is to Water• The Power Of Human-To-Human Contact• Dignity• HospitalizationCopyright © 2011 The Johns Hopkins University Press... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Narrative SymposiumPersonal Narratives Experiences of Psychiatric HospitalizationV. Barnard, J. Carson, Eugene Doe, Robin Driben, Anonymous One, Anonymous Two, Charles Kelley, Michael Kerins, D. Millman, Anonymous Three, Viesia Novosielski, Ben Zion, and Anonymous Four• Dreaming: A Recovery Story• The Intervention of the Demon• Bent but Not Broken• Tortured Souls Do Not Rest• Homesick• A Professional Patient No More• My Spiritual Journey• Personal Account of Psychiatric Hospitalization• Psychiatric Hospitalization Story• As (...) Ice Is to Water• The Power Of Human-To-Human Contact• Dignity• HospitalizationCopyright © 2011 The Johns Hopkins University Press... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Not the End We Planned ForAnonymous FourIn 1997, my four–year–old daughter was diagnosed with a high–risk medulablastoma. She underwent the current treatment program at that time. She suffered multiple complications from the treatment and developed seizures, which caused her to lose her sight and 80% of her hearing. These all contributed to her manifesting many behavioral issues, making her a danger to herself and others. Also during this time, (...) she developed large amounts of brain atrophy from the maximum radiation dose she had been given. In August of 2010, Emily was still deteriorating, her seizures were uncontrollable, and her quality of life was extremely poor. A meeting to discuss how to care for my child if an acute crisis presented was held. The meeting included her parents, oncologist, endocrinologist, pediatric neurologist, social worker and the head of medical ethics. We discussed what course of action would be best for her nothing could be done to reverse her condition or prevent further deterioration. A POLST is a physician order for life sustaining treatment and is appropriate if the doctor feel that the patient has a good chance of death in the next year. The purpose of this document is to have a plan in place in case the patient has a life threatening crises. We chose to put a POLST in place with specific instructions not to intubate. This was a hard decision to make for a parent, but we all felt it was the best choice for her.A few months after the POLST was entered, in November, 2010, I came home from the store and my daughter’s caregivers told me she had complained of a headache different from her usual headaches. They gave her Tylenol with codeine and she went to bed about 4 p.m. When I checked her later she seemed fi ne, merely sleeping her headache off. We [End Page 30] decided to let her sleep some more. Around 8 p.m the caregivers came and got me because they could not wake her up to go to the bathroom, which was her normal routine. I immediately went to try and wake her up but could not. I ran my thumb up the bottom of her foot and there was no reflex response. I yelled for her father that we needed to immediately go to the hospital.We took her to the ER at the local hospital that treated her close to the house. We told them we did know what was happening with her but that there was a POLST in place in her chart. They started lines, a nasogastric tube, and sent her for a CT, which showed massive amounts of blood in her brain. I repeated again to the ER staff and physician that there was a POLST in place but no one acknowledged my statement. I asked for a different physician, one that would respect the POLST, and was told there was no one else nor was there a neurosurgeon available. The attending physician insisted she be intubated in order to be transferred to a partner hospital (more than 20 minutes away) where there was a neurosurgeon on duty. I asked him to please call her oncologist at which point he yelled at me that, “he was not calling anyone else and that she needed to be intubated and transferred to the other hospital.” By this time, four hours had passed and I knew she had not gotten any medication for pain, so I told the physician to go ahead and transfer her since I knew the hospital we were at would not admit her for palliative care. She was then intubated, in violation of the POLST, and transferred to the other hospital where the neurosurgeon there told us what we already feared: That she had experienced a massive bleed in her brain. We requested she be extubated and be given palliative care to make her comfortable until she passed away.It is tragic that our daughter’s last hours involved aggressive medical treatment. As parents we hoped to avoid any additional suffering for our child, we did everything we knew to do to insure aggressive... (shrink)