Conor is still recovering from Rhabdomyolysis, an adverse reaction to anti-seizure medication, Lamotrogine and needs phsyiotherapy to rebuild his damaged muscles, balance and co-ordination. Just being home is a huge help for Conor, back home with Mom, Dad, his brother and his familiar routines. One of those routines has been to get out of bed every morning at 6 am. If he is awake at 5:30 he stays in bed until 6. That is his routine and Conor has a classic autism need for routine. When he gets up each morning his routine has also included turning on the (Read more…) . . . → Read More: Facing Autism in New Brunswick: Conor’s Physiotherapy With CBC’s Terry Seguin
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Shannon Rosa, with the Twitter help of Seth Mnookin and Dr. Jon Brock is at it again, misrepresenting autism disorders and the state of knowledge about autism causation and of course blaming autism parents fighting for their children for the latest report of a professional caregiver abusing an autistic child because they dare talk honestly about the negative aspects of autism DISORDERS : “At their worst, negative media-sown autism messages influence people like Greg Simard, who brutally beat a 12-year-old, non-speaking autistic boy in his care. Simard justified his actions by saying of the boy, …. Some autism parents never find (Read more…) . . . → Read More: Facing Autism in New Brunswick: Unthinking Autism Guide Shannon Rosa Attacks Autism Parents …. AGAIN. Above Conor, and Mom, in the bottom pic, on the way home. Conor’s Mom stayed at the hospital with him 24/7, for 2 weeks Dad spelled her off at times and the nursing students also sat with Conor and gave Mom some breaks once he was moved from the Intensive Care Unit to a room in Pediatrics. In the grainy pic below (taken in dark lighting) Conor rests at home on one of our living room cozy couches. Conor is home! After 2 weeks in the hospital, including 6 days in intensive care, it feels great to have our buddy (Read more…) . . . → Read More: Facing Autism in New Brunswick: Conor Is Home From the Hospital! In mid-April, pursuant to a neurologist’s advice, we started Conor on Lamotrogine, an anti-eleptic drug which is reputed to have benefited many people suffering from seizure activity. Hours after receiving his third dosage Conor suffered his second Grand Mal seizure, that we know of, since his first in November 2012. Last week he became extremely drowsy and last Friday April 26, 2013, our family doctor recommended we reduce the dosage (the neurologist is out of town until May 13, 2013). Later, early Friday evening Conor’s condition worsened noticeably and a rash had developed. Rash development is a known warning sign (Read more…) . . . → Read More: Facing Autism in New Brunswick: Conor Is Safe Now But We Almost Lost Our Buddy: THANK YOU To ALL Who Saved Him! Conor enjoys some Kermit Komfort this morning while sleeping and awaiting a trip to see our family physician. It has been a very difficult week for my Buddy as we work through his seizure and medication issues. Hoping things turn for the better today! Today is Earth Day! Conor celebrated yesterday with some Run, Jump, Fly fun on the North Riverfront Trail here in Fredericton, New Brunswick, Canada. We try to get outdoors and celebrate our natural environment with Conor every day, every chance we get. Since my son was diagnosed with Autistic Disorder in 1998 the rates of diagnosed autism have risen dramatically from 1 in 500 to the current estimated rate of 1 in 88. There is common acknowledgement that a substantial increase resulted from the DSM-IV changes which pushed acceptance of Aspergers as part of an autism spectrum. Social factors such as increased awareness and availability of services under an autism label have also been cited. Some purported autism experts though have concluded that the dramatic autism increases are entirely attributable to diagnostic changes, increased awareness and the desirability for service reasons (Read more…) The pictures above were initially posted on this site on May 26, 2012, several months before Conor’s 1st known Grand Mal Seizure in November. As I posted then, external conditions were perfect and Conor was enjoying a favorite activity in a favorite location when he suddenly began hitting himself in the head. I don’t know what caused it, Conor lacks the communication skills to explain, but it was definitely internal. Together with many similar circumstances including sudden closing of his eyes and looking blankly into the distance I reported them to his pediatrician as possible seizure activities. The pediatrician did (Read more…) . . . → Read More: Facing Autism in New Brunswick: Autism and Seizures: Conor’s Second Grand Mal Seizure (That We Know Of) Our entire family has had nothing but good experiences at the Doctor Everett Chalmers Hospital, the “DECH”, in Fredericton and that trend continued this morning when we took Conor for blood tests at 7 am. The tests were required by the consulting neurologist to establish some base lines before starting some new medications to address Conor’s seizure activities. We contacted the DECH yesterday to see if they could accommodate Conor with a direct entry to the blood works room without taking a number and waiting in line. We explained his autism, intellectual disability and tendency to have meltdowns when frustrated. . . . → Read More: Facing Autism in New Brunswick: Blood Tests and Autism: Conor and the DECH Both Did Very Well Today! Thank You Very Much! Photos by Harold L Doherty One of the more irrational features in some autism discussions is the claim that being non verbal is not a significant indicator of autism severity. Anyone who thinks that verbal communication is not a significant factor in daily functioning is fooling themselves. Communication is important for humans as it is for birds. Crows are often reputed to be the smartest bird species and YouTube abounds with clever activities of crows. Anyone who has walked in areas populated by these very smart birds has heard the loud oral communication that goes on between these marvelous, . . . → Read More: Facing Autism in New Brunswick: Autism Severity: Verbal Communication Doesn’t Count? Crows Say Otherwise! Intellectual Disability remains the Elephant in the Autism Living Room;no one wants to admit it’s there or to talk about it It is politically incorrect in today’s autism world to acknowledge the existence of the invisible autistics, the one’s unlike Ari Ne’eman, John Elder Robison, Alex Plank and Michelle Dawson all of who whom have enjoyed great success and demonstrate considerable intelligence and most of whom have never met a television camera or gathering of journalists that offends them. Some of the extremely high functioning superstars of autism “self” advocacy have literally built careers telling the world (Read more…) If past is prologue very little awareness of the harsher realities of autism symptoms will be generated on this WAAD, April 2, 2013. Next year, in 2014, and for years thereafter, the streamlined DSM5 autism will also eliminate many on the very high functioning and low functioning ends of the autism spectrum. It is unfortunate that in the DSM5 Autism Spectrum Disorder definition the American Psychiatric Association is revising the medical definition of autism spectrum disorder in ways that are expected to change its diagnostic characteristics. There is no good reason to wreck havoc on autism research and diagnosis . . . → Read More: Facing Autism Symptoms in New Brunswick: World Autism Awareness Day 2014 The primary front line autism service providers, regardless of where one lives, are parents. In Canada at least parents have also been the first and most effective advocates for services for autistic children from BC to Ontario to New Brunswick to Newfoundland and all points between. For most parents recognition of that fact is important only to prevent others with less understanding of the impacts of autism on our children from purporting to speak on their behalf when they do so contrary to our children’s best interests. The only award most of us really need though are the hugs and (Read more…) L: Education and Early Childhood Development Minister Jody Carr R: Autism Society New Brunswick Acting President Harold Doherty The Autism Society New Brunswick meeting last Saturday March 23, 2013 was scheduled to be a regular meeting with election of a new Board of Directors and routine business. That plan was changed, the election was adjourned, at my request, and after passage of a motion to that effect, and the routine business, for very good reason did not take place. Instead ASNB took full advantage of the presence at our meeting of Education and Early Childhood Development Minister Jody Carr. . . . → Read More: Facing Autism Symptoms in New Brunswick: Education and Early Childhood Development Minister Jody Carr Opens a Dialogue with the Autism Society New Brunswick Anyone with an interest in autism in NB is invited to tomorrow’s meeting at MacLaggan Hall, UNB Fredericton Campus, doors open at 12:00 noon, meeting starts at 12:30 pm. Special guests expected to attend include: Minister of Education and Early Development Jody Carr Bill Innes, Director of Child Welfare & Youth Services Annette Bourque, Clinical Director, Office of the Ombudsman & Youth Advocate Nick Duivenvoorden, Liberal Party, New Brunswick Look forward to seeing everyone tomorrow. Harold Doherty Acting President ASNB Parents and others affected by autism disorders in New Brunswick are invited, and asked, to attend the ASNB 2013 AGM this Saturday March 2013 at MacLaggan Hall UNB Fredericton formally beginning at 12:30, but open for discussion at 11:00 am. Autism families have been excluded from government autism decisions, we are no longer stakeholders in the eyes of the Alward-Carr-Porter administration in matters affecting persons with autism, and if we do not prepare, once again, to speak up and be heard our children and loved ones with autism will suffer the consequences. Come to the meeting this Saturday and prepare (Read more…) April 2, 2013 will feature another World Autism Awareness Day around the world. Many blue lights will shine, politicians will pose and take credit for helping advance the cause of autistic persons and their families, countless media reports will talk about the gifts of autism and television series and movies alike will feature gifted individuals and autism, once again, will be portrayed for public consumption as the domain of brilliant if socially quirky personalities. Little if anything will be said about the vast majority of those with autistic disorder who are limited by intellectual disability, or about those who suffer (Read more…) I am thrilled to be heading off shortly for Miramichi to attend the Annual General Meeting of Autism Resources Miramichi Inc. at 139 Duke St. Starting at 12:00 noon. ARM has been kind enough to offer me an opportunity to speak and provide an overview of the history of autism advocacy in New Brunswick over the past decade and to address our most pressing need …. adult autism care. Lila Barry of ARM is a former Autism Society New Brunswick president and was one of our most active and effective advocates for autism specific early intervention and school services . . . → Read More: Facing Autism Symptoms in New Brunswick: Off To The Autism Resources Miramichi AGM! Conor, 2nd Birthday, the day before he is diagnosed with PDD-NOS (subsequently changed to Autistic Disorder) Yesterday was Conor’s 17th birthday. Today is exactly 15 years since he was diagnosed with an autism disorder, PDD-NOS, the day after his second birthday shown in the pictures above. Shortly afterward he was re-diagnosed with Autistic Disorder, and he was also subsequently assessed with profound developmental delays. I can’t say that I am overly impressed with the research into autism causes, treatments or even our understanding of what constitutes autism that has taken place in the last 15 years. 15 years ago . . . → Read More: Facing Autism Symptoms in New Brunswick: Conor’s Autism Diagnosis 15 Years Ago Today Together with New Brunswick’s foremost autism expert, clinical psychologist and UNB Professor Emeritus (Psychology) Paul McDonnell, I enjoyed a visit to NB NDP headquarters on Prospect Street in Fredericton this afternoon for a direct, candid and open minded discussion about autism services in New Brunswick with NDP leader Dominic Cardy and NB NDP Executive Director Amanda Francis. We covered a lot of ground with Paul reviewing early intervention, school and adult care autism services along with the parent advocacy that led to those services being provided. (I chimed in on occasion). In fact everyone contributed to the discussion. It . . . → Read More: Facing Autism Symptoms in New Brunswick: Talking Autism In New Brunswick With NDP Leader Dominic Cardy Seizures and epilepsy are serious issues for persons with autism and their families as we learned first hand in our home on November 17, 2012 when Conor suffered a very serious seizure. Following is a publicity release issued in respect of Silently Seizing and author Caren Haines, RN (Haines also received input from Nancy Minshew MD) which I am pleased to publish on this site. I encourage everyone to read this release and consider using any media or social media you can to further its distribution and awareness of seizure issues for persons with autism disorders. The Damaging Impact Of . . . → Read More: Facing Autism Symptoms in New Brunswick: The Damaging Impact Of Seizures On Individuals With Autism Resigchouche Regional Hospital Centre As an Autism Society New Brunswick representative I attended a meeting held at the Restigouche Regional Hospital Centre a few years ago to participate in a meeting to review the operations of the RRHC and to vote on its future, specifically whether to continue to operate or to close. I voted to continue to operate the RRHC. There were autistic adults who had been living there for many years. No alternative in New . . . → Read More: Facing Autism Symptoms in New Brunswick: No Meaningful Inclusion, No Community Living for NB Youth and Adults With Severe Autism Challenges A study presented at the IMFAR 2012 conference this spring in Toronto, Underdiagnosis of Autism Spectrum Disorders in Individuals with Intellectual Disabilies, seems to provide evidence contradicting the widely propagated assertion that the DSM-IV era has seen autism incorrectly diagnosed as a substitute diagnosis in many cases of intellectual disability. Roeyrs and Thys actually conclude that autism is UNDER diagnosed in a large study of persons with intellectual disability. If the study results are confirmed it seems likely the harmful impact of the express, and intentional, targeting for exclusion of severe intellectually disabled from the DSM5 autism spectrum . . . → Read More: Facing Autism Symptoms in New Brunswick: UNDERdiagnosis of Autism Spectrum Disorders in Individuals with Intellectual Disabilities The video and clip below are from the Medicare for Autism Now web site and feature MFAN co-founder Jean Lewis, one of Canada’s foremost autism advocates, providing an articulate, personally informed summary of the struggle for autism treatment in Canada. Jean keeps the discussion on a non-partisan level and discusses the fight to end Canada’s inhumane and discriminatory exclusion of treatment for those with autism disorders in the context of other historic struggles for liberation from discrimination based on race and gender. A very important point to remember in Jean’s message is that such struggles are never overnight affairs. . . . → Read More: Facing Autism Symptoms in New Brunswick: Medicare’s Orphans: Jean Lewis On The Struggle for Autism Treatment In Canada February 7, 2013 Dear Honourable Premier Alward, Honourable Ministers, Respected Leaders of the Liberal, NDP and Green Parties of New Brunswick You are all respectfully invited to attend the 2013 annual meeting of the Autism Society New Brunswick scheduled for March 23, 2012 commencing at 12:30 at MacLaggan Hall, UNB Fredericton. The meeting will be open to anyone in New Brunswick affected by or with an interest in autism spectrum disorders. The Centers for Disease Control (CDC) in the United States currently estimates that 1 in 88 persons will be diagnosed with an autism spectrum disorder (ASD). The primary diagnostic . . . → Read More: Facing Autism Symptoms in New Brunswick: Autism Society New Brunswick Invitation to Premier Alward, Ministers, Opposition Leaders to Attend ASNB AGM |
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