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:The Difficult Road to Deciding on CircumcisionAnonymous TwoAnonymous TwoWhen I got my results back from my noninvasive prenatal testing, NIPT and found out I was going to have a little boy, one of my first thoughts was, "I don't want to circumcise him," which sounds silly because I just found out the gender of my baby and my first thought is about his genitalia. The idea of growing and (...) carrying this perfect little baby for nine months and then hurting him was unthinkable to me. I simply did not want to hurt him. The idea of it made me feel sick. Anytime the subject came up, I would protectively put my hand over my belly. And I do admit there were a lot of times I wished I was having a girl so I didn't have to deal with the circumcision debate.There was a lot of conversation between myself and my husband about it. My husband was adamant about getting it done. He referred to uncircumcised penises as "snake penises" and said our son will be made fun of for being different. He said it would be easier for him to clean and when he's old, he won't have to worry about infection. I would counter with, "well what if he falls in love with a girl from a culture that doesn't circumcise? She will think his penis is weird." The more we talked about it, the more ridiculous it felt thinking that far in advance and all these hypothetical situations he might get in over his penis. My parents wanted it done for religious reasons, but that wasn't a factor for me. My mom kept saying it's in the Bible and it needs to be done. My boss is Jewish and she joked that I could just convert to Judaism and the choice would be taken away from me so I didn't have to stress over it. Everything I read on my mommy groups and sites like Reddit called male circumcision child abuse and stated how barbaric it was. Terms like "genital mutilation" were thrown around a lot, and I didn't want to be part of a group that was seemingly looked down upon by so many.I spent my whole pregnancy saying how much I did not want to circumcise my baby. About a week after he was born and we were starting to get settled, my husband started to call around trying to get him an appointment for circumcision. It was unusual to do it this way, as typically it's done when babies are still in the hospital. But the hospital wasn't doing circumcisions because it was elective, and they weren't doing elective procedures because of COVID. At his first doctor's appointment, I talked to our pediatrician about it. She is Indian and told me she didn't circumcise her boys and said that it was very normal in many parts of the world to not do it. I would watch her pull back the skin to check it for fibers and think, "Is it really that bad to keep it? It's just skin." Our pediatrician didn't do it, as she doesn't perform procedures in the office, and she gave us some names of doctors that were supposed to be doing it. My husband called them all and none of them were doing circumcisions either. Finally, my husband found a doctor, but he was booked out for almost a month and a half. With no other option, we made the appointment. I was not thrilled about it, and made my husband do all the calls and arrange it because I did not agree with it.What made me change my mind about circumcising him was I didn't want him to be different. My husband assured me this was the best choice and he was very concerned our son would be bullied for being different. I have a good friend that is a nurse in a long term care facility currently. I called her and asked if it was really that bad for old men to care... (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:Advocates, Not Problem ParentsAnonymous TwoNothing could have prepared us for the shock of hearing that our son had a brain tumor.Rob* was 13½, an active, healthy eighth grader, when he developed a headache so bad he couldn’t get out of bed in the morning. We saw the pediatrician three times over the next ten days. On the third visit, after ruling out problems at home, stress at school, strep (...) throat and mono, he sent us for an MRI. When the radiology tech handed me the films and told us to drive back to the pediatrician’s office, I knew we were in trouble. Sure enough, after all the other patients had left, our long–time doctor called us into his tiny office, shut the door and fumbled with the films as he pointed to a white spot that he said was a brain tumor.So began the experience that would change the course of our lives. We remember the diagnosis in detail and relive it in slow motion. We recall packing suitcases, driving to the hospital, waiting to be seen in the emergency room, and walking through doors marked “Pediatric Hematology/Oncology” for the first time.We date everything “BC” (Before Cancer) or “AD” (After Diagnosis). We are grateful every day that [End Page 13] our son is alive, but we know he is forever changed. We are changed: Our nuclear family, our extended family, everyone who knew us and supported us at the time was affected. A pediatric cancer diagnosis is a bomb that shatters your world without warning. If you’re lucky, you can pick up a lot of the pieces, maybe even most of them, but the world you re–enter is never the one you inhabited before.Our doctor delivered the diagnosis to Rob and me at the same time. I’ve thought about this many times and perhaps one day will ask him: Why did he choose to do it that way? Was it a conscious decision or just happenstance? Was it kinder, in the long run—like pulling off a band–aid quickly—or terribly risky? What if I had collapsed at the news? I asked to step into the hall to use the phone. In a state of numbness, I called my husband. He knew we had had an MRI a few hours earlier. “Come quickly,” I said. “There’s a mass.”We chose to go to a top-ranked major medical center and were admitted that evening. A couple of days later, the discovery of tumor markers in Rob’s cerebrospinal fluid and blood confirmed a central nervous system mixed germ cell tumor. We were told he would require six cycles of chemotherapy, followed by six weeks of radiation, and possibly second–look surgery and high-dose chemo with stem cell rescue on top of that. We were given a consent form listing a catalogue of short–and long–term side effects, among them the likelihood of infertility. We were urged to start treatment as soon as possible.By sheer coincidence I had just completed a project for a small, nonprofit organization that existed to inform young adult cancer patients about their fertility rights and options. I knew that infertility concerns were usually pushed aside at diagnosis to make way for other priorities, namely the urgency of starting treatment. And that’s exactly the kind of pressure we were facing.But my husband and I were not ready to sign away our son’s fertility in what felt like a no–confidence vote, a capitulation. We needed to believe that he would survive and put this horror behind him, that he would look forward to marriage and starting a family. We were willing to cede nothing to the disease at this early stage of the game. Was this rational, naive or selfish on our part? I don’t know.The medical team seemed surprised when we asked for a delay in treatment in order to collect sperm samples. They warned that our son’s condition could decline suddenly—and that postponing treatment by even several days might be dangerous. However, at our insistence, they agreed to the delay... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Road to RedemptionAnonymous TwoI “am Dr X.* and I am a trained and board certified neonatologist with some years of experience in a high volume NICU with complex pathologies. I have been dismissed from the care of your baby by the fetal surgeon who is not trained in what he’s attempting to do,” that was how I felt when I left the operating room (OR), after performing initial (...) resuscitation on a newborn with congenital diaphragmatic hernia (CDH) with very poor prenatal prognostic indices. CDH is a diaphragm abnormality that allows abdominal organs to move into the chest and restrict lung development. The better part of me knew not to make such a statement and chose not to do so, as this was about the family and a very sick baby, not the professional wrangling of two medical teams or the expression of frustration by a neonatologist who was morally conflicted.I work in a level four Neonatal Intensive Care Unit (NICU) and a very large one by any standard. Staff turnover had been an almost nonexistent issue in previous years because of the very conducive work environment of the NICU. Every team member (physician, nurse, respiratory therapist, pharmacist, etc.) felt like a stakeholder in providing optimal outcomes for the vulnerable neonates in the NICU.As change is the only constant thing in life, the hospital management decided to explore new frontiers and open a center for fetal medicine, with the hope of being a referral center in the region. They brought in a surgeon who came highly recommended for clinical acumen, but not for interpersonal relationship skills (unbeknownst to me). This surgeon, Dr Y., was hired to oversee the fetal center and build it into a center of excellence. Since this had to be a collaborative effort, other specialties (and subspecialties) had to be involved to make this a success. A representative from each of these specialties, including bioethics, was assigned to the fetal center team.The first inkling of a major problem occurred with the very first patient. The team met for the weekly meeting, reviewed the patient’s history and made a tentative plan, which included multidisciplinary counseling. This would require either a joint meeting with the patient or individual consults with the patient at her convenience. The following week at the weekly meeting, Dr Y. informed the group that he had met with the patient and counseled her and she had agreed to an extraordinary procedure for an oral lesion. In my opinion (and that of others), this lesion was not obstructive and could be immediately dealt with at delivery by an Otolaryngologist (ENT) surgeon, without putting the mother at risk for complications arising from the procedure being offered. There was a long discussion about why this was inappropriate [End Page E1] and why further imaging, discussion between the subspecialties and counseling should have been done prior to making this delivery plan. All felt this delivery plan could be remedied prior to delivery. However the surgeon had made plans with the obstetric team (who were at his mercy for financial/ political reasons) to continue with this plan. On the day of delivery, the NICU resuscitation team was called to another operating room instead of the labor and delivery room. I was even more appalled when I realized that the oral lesion was the size of a peanut! I felt like I failed in my obligation of veracity by avoiding the mother’s questions regarding the necessity of the procedure. Every member of my team felt the same and on several occasions I had to reassure concerned nurses that this was an aberrant occurrence that would not repeat itself... so I thought.I informed my departmental chairperson, Dr Z., who had a conversation with the fetal surgeon, Dr. Y., to inform him of my concerns and the effect of Dr. Y.’s actions on my group (physician, nurse practitioner, nurses). This led to being labeled unsupportive of Dr Y.’s goals and caused a less than cordial relationship towards me and the entire NICU group. The next week a picture of Dr Y. and the parents with the baby was on the front page... (shrink)