tag:blogger.com,1999:blog-33052404.post3493373623844269961..comments2024-02-13T21:31:57.980-04:00Comments on Facing Autism in New Brunswick: Conor's Hour In Hell - Autism Reality At The HospitalAnonymoushttp://www.blogger.com/profile/05838571980003579163noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-33052404.post-26165446460743022322009-03-12T13:26:00.000-03:002009-03-12T13:26:00.000-03:00Claire,Yes, disabilities of many types offer chall...Claire,<BR/><BR/>Yes, disabilities of many types offer challenges in having to always bend to the expectations of the medical system, and I sympathize with your situation too.<BR/><BR/>********************<BR/><BR/>This doesn't solve the problem, but here's a thought I've had which makes me chuckle a bit.<BR/><BR/>If my son is acting inappropriately in the waiting room like screaming, squealing, touching other people, etc. I make sure that I have TOLD THE RECEPTIONIST that he has autism and there's only so much I can do, and that it would be to EVERYONE'S BENEFIT for him to be seen quickly. I think this may not necessarily work that time, but you betcha s/he'll remember for the next time!!! <BR/><BR/>I plant today, I reap tomorrow.Marni Wachshttps://www.blogger.com/profile/02824153164609048742noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-60450920065362037042009-03-12T08:22:00.000-03:002009-03-12T08:22:00.000-03:00Marni, the medical system is unaware of anything r...Marni, the medical system is unaware of anything related to discomfort when it comes to disabled kids (or adults for that matter). When we used to visit the neuro clinic, wait times were ALWAYS three hours later than scheduled appointment. Try keeping a child in a wheelchair with minimal function and no place to lay down or change her happy for that long...then drive home for another hour after that. We stopped going. It's just awful...I can't imagine what it would be like for an autistic child.Clairehttps://www.blogger.com/profile/13070297384173508509noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-10030060134150854962009-03-11T21:14:00.000-03:002009-03-11T21:14:00.000-03:00Anxiety is a byproduct of resisitance to change an...Anxiety is a byproduct of resisitance to change and dealing with transitions.<BR/><BR/>Transitions to new environments may be made easier by visiting the new location (hospital) to establish familiarity with the physical space,routine,personnel and environment.<BR/><BR/><BR/>When permanent transitions to a new environment(hospital) have been made,allow time for Conor to adjust to the sights, sounds and smells of the hospital and then gradually increase demands.<BR/><BR/><BR/>What may help is a portable visual schedule for Conor to refer to in order to reassure himself of when transitions and events will occur.<BR/><BR/><BR/>I hope these tips may help relieve Conor's anxiety while staying at the hospital.<BR/><BR/>Good Luck!shakingsystemhttps://www.blogger.com/profile/12081590908657431618noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-69949948275644114482009-03-11T17:08:00.000-03:002009-03-11T17:08:00.000-03:00Waiting in a medical office is quite often "social...Waiting in a medical office is quite often "social hell" for a parent. The social norm of a child sitting quietly in a chair is only momentarily possible (for this Mom anyway), even with great effort, constant focus and attention and even using an ABA-style "wait" program.<BR/><BR/>You often get the quick look of displeasure, the loaded stare of parental judgment, and on a "great" day, you get to hear a judgmental comment. Thank goodness when I had this happen, there were several people who were understanding and offered me some help, and some candy for my son. There are good, understanding people out there too which is immensely helpful.<BR/><BR/>My point is that there is that added burden of handling the tension created by the constant disconnect of societal norms and expectations, and the reality of autistic behaviours in the waiting room / medical environment, and it adds a tremendous amount of pressure to the original problem, already rife with challenges in it and of itself, of getting medical treatment for your child.<BR/><BR/>I believe these factors are part of many parent's assessments of whether or not to pursue medical care on a given day, or a given issue. I don't doubt that the bar is much higher for the parent of a child with autism to seek care. It is what it is; it has to be so that this is true. I can say for sure it's true for one family. This seems like something the medical system should be aware of.Marni Wachshttps://www.blogger.com/profile/02824153164609048742noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-19974371108922101862009-03-11T12:11:00.000-03:002009-03-11T12:11:00.000-03:00I am so sorry Conor had a hard time at the hospita...I am so sorry Conor had a hard time at the hospital. <BR/><BR/>We had our first dental surgery with our son last weekend - after months and months of dread and worry, and two pre-op appointments. It wasn't an easy day, but our dentist & the hospital staff did everything they could to make it go better for William (and cheerfully accomodated our requests for alternatives to amalgam fillings & nitrous oxide). William wasn't nearly as scared as I thought he might be. He seems to finally be forgetting the many bad hospital experiences he had when little. <BR/><BR/>I don't think people understand how complicated and stressful it can be to access even basic health care for children with severe autism. I hope Conor's surgery goes smoothly. I really love the pictures you post of him - it's easy to see what a wonderful boy he is, and how much your family cherishes him.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33052404.post-62063178843892816412009-03-11T11:47:00.000-03:002009-03-11T11:47:00.000-03:00Sorry he had such a terrible time of it. We're luc...Sorry he had such a terrible time of it. We're lucky our little one can usually adjust to changes with minimal fuss especially if there's a good playroom of toys available. <BR/><BR/>Hoping your dental surgery goes well. We had our first one a year ago... after nearly a year wait ::eye-roll:: and it went better than I dreamed.... A lot better than some of those NT parents experienced - snickers :)<BR/><BR/>Part that got me was the "shouldn't we give him the tour" by the social worker. Yes, had it been my elder we would have had to or the anxiety would have been off the charts. Thankfully, he does very well at the dentists.<BR/><BR/>For the little one... wasn't worth the effort. He's a "do it and get it over with" kid. <BR/><BR/>Best wishes that surgery day goes well.farmwifetwohttps://www.blogger.com/profile/02680758336779501712noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-33735100097096660352009-03-11T08:56:00.000-03:002009-03-11T08:56:00.000-03:00My daughter also bites her hand when frustrated an...My daughter also bites her hand when frustrated and she has periods when she is frustrated several times a day.<BR/><BR/>I don't knw if you saw ASAN's selfish response to Lindt Chocolate's generosity. It's effort to stop the company from giving to Autism Speaks.<BR/><BR/>The problem again is the spectrum. The search for a cure may be something completely unneeded for some on the high end of the spectrum, but for low-functioning children it would be a godsend. <BR/><BR/>Many of the ND high-functioning types are more worried about being personally insulted by pursuit of a cure than they are of condemning low-functioning children to institutions.<BR/><BR/>This is not to say these institutions are bad in themselves. Indeed the loss of them in many areas is tragic. However, given the choice that my daughter live a life with friends in society or a life in an institution. I want her to have the ability to choose the latter.<BR/><BR/>There may be valid reasons why this cannot happen for her, but it shouldn't be because some high-functioning person had his pride wounded by the suggestion that a cure for Autism is needed.Anonymousnoreply@blogger.com