Showing posts with label Conor Doherty. Show all posts

Conor Countdown Continues In Support of FLEXIBLE, EVIDENCE BASED Inclusion


The Conor Countdown continues, as Conor gets up each day at 6 am and changes the number reflecting the number of days until school resumes.

My son Conor, and his autism disorder disability,  have been well accommodated in schools here in Fredericton, New Brunswick, Canada.  He has benefited both from the assistance of education aides and resource teachers trained in the UNB-CEL Autism program and by placement, at our request, outside the regular classroom for his ABA based instruction.

 His placement is not segregation in the sense of the racial segregation which once prevailed in the American south.  His placement reflects the fact that Conor's autism based sensory sensitivities and need for predictable routine, coupled with his individualized learning style and instruction methods require a quieter learning environment. 

In the regular classroom, early in Conor's education,  he bit his hands every single day until he was removed to a quieter location where the self injurious biting ceased. Now in high school his individualized instruction continues but he has many, many opportunities for socialization at the Leo Hayes High School Resource Centre with other students with special needs, in common areas and activities like school outings, visits to the cafeteria and ... Conor's favorite by far ... in weekly visits to the Nashwaaksis Middle School swimming pool. 

Conor loves his flexible, evidence based schooling so much that the summer, with no school, is a difficult time for him.  We do our best to help him during this period and Conor does his best to help himself.  One of the activities that helps him get through the summer break is the "Countdown".  Each day, every day, at 6 am Conor gets up and changes the number on his board under the question "How Many Days Until School?"  He can see the number getting smaller each day, he can take steps each day to make the number smaller reducing his anxiety and frustration.

Conor's self injurious biting while placed in the regular classroom was a vote against the extreme, non evidence based "regular classroom for all students" philosophy. Now, during the school year Conor packs his lunch bag every night and puts it in front of the side door to the driveway and Dad's car. During the summer Conor does his "How many days until School" countdown.  Both activities are strong compelling statements from Conor in support of the flexible, evidence based, inclusive education he has received at school since being removed from the regular classroom.

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Run Jump Fly Boy Is Back - Thank You Again DECH ICU!


A few months ago, Conor was lying unconscious  in a bed at the Intensive Care Unit of the Chalmers' Hospital (the DECH) with tubes running out of his body and hooked up to 10+ year old monitoring equipment.  Notwithstanding the age of the monitoring equipment the fantastic DECH ICU team brought Conor back to us without any restrictions or impairments.  Conor's recovery has been constant since his release and we are happy. Today on the trail Conor hit the final recovery benchmark with the return of our Run, Jump, Fly boy!






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Why I Chose Autism REALITY As My Social Media Name


The picture above, for those visiting my blog for the first time, is my son Conor now 17+ years old.  I love him dearly and he brings great joy into my life every day.  He is also severely autistic with severe cognitive challenges (intellectual disability) and like many with those characteristics he also suffers from epileptic seizures.  As great a joy as he is he also engages in acts of self aggression and suffers from sensory challenges, meltdowns and obsessively repetitive behaviors that are very disruptive in themselves.  

For Conor his autism is not a joy, a blessing, a superior ability or a different way of thinking.  It is a serious disability, a disorder,  and his intellectual disability and epileptic seizures are not "co-incidences" or "co-morbidities". They are part  of his reality, a unified part of his reality, together they limit his life expectancy. Those are all facts that I have been determined to face throughout his life so that I do not do him a disservice.

I will never run from Conor's reality because to do so, as it would for an obvious, physical disability, could be harmful to him.  I have chosen long ago not to embrace the non evidence based belief that if I only pretend that autism is a blessing that somehow that belief will magically transform reality. 

I have helped Conor by being part of his life and enjoying his company every single day and will do so as long as I live. I have tried to help my son, and others in my province and country who suffer as he does, through determined advocacy, by  facing reality head on. And I will continue to do so as long as I live.  Others can choose political correctness and feel good cliches. I will continue to deal with autism ... reality ... and love my son as I do.

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Conor Debunks TWO Autism Myths Eh!

Yesterday was Canada Day and Conor sported his Team Canada shirt to celebrate.  He also debunked not one but TWO autism myths.  Conor has received ABA based intervention at school for 8 years.  Yet, contrary to the myth that ABA causes discomfort and harm to persons with autism disorders,  Conor shows his terrific smiles again ( see also side bar on this blog) debunking that nonsense yet again.  He also debunks the myth that people with autism disorders do not like hugs and his Mom was very happy to assist in the demonstration!




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Conor Goes For A Swim (and a Dive and a Slide) and Shows Terrific Progress In His Rhabdomyolysis Recovery


Conor home after a great swim adventure;
making terrific progress on his recovery

Conor's autism and profound developmental delay were supplemented by two grand mal seizures between November 2012 and April 2013.  The second seizure occurred two days after he began treatment with the anti seizure medication Lamotrogine.  During the second week of treatment when his dosage was increased from 1 to 2 25 mg tablets a day he began to sleep and medical advice was sought.  The specialists were not available quickly but our family doctor saw us early the next day and advised us to cut back on the dosage which we did.  Later that day though Conor still developed a rash and temperature and went to the emergency ward of the local hospital, the DECH.  He spent 6 days in the Intensive Care Unit and two weeks altogether in the hospital.  Conor's adverse reaction to his medication was diagnosed as Rhabdomyolysis a condition in which the muscles break down and release substances which pose great risk to the kidneys.  But Conor received excellent medical attention and was released to come home where he has continued to make made great progress.

We would like to take some credit for Conor's great recovery but the truth is he has led with his own initiative. Conor was jumping up off the couch even before he had his balance and we had to keep a close watch on him. This week Conor returned to school for part days.  His mobility and balance improved dramatically each day and this morning he went swimming at school for the first time since his hospital stay.  The plan was for Conor to go to the pool and sit in the hot tub.  Conor had none of that.  His aide informs us that instead  Conor walked down the accessibility ramp into the shallow end of the pool. He subsequently went to the  diving board where he jumped into the deep end and swam like a fish.  Conor also made for the giant slide where he climbed to the top and slid down.   

I couldn't have asked for a better present then to learn about Conor's swim adventure today.  6 days in the ICU with 5-6 tubes at a time sticking out of my buddy Conor seem  like a bad dream today.  Our Run Jump Fly Boy was flying today and we are happy, very happy.

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Conor's Physiotherapy With CBC's Terry Seguin


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 television and watching  "CBC Terry Seguin".   

Conor has been sleeping on a living room couch since his return so I could be nearby on our other couch to keep an eye on him in case he was in distress. This morning I was in the adjacent kitchen when I heard some loud walking noises in the living room and went in to find that Conor had walked from the living room to the television to turn on CBC Terry Seguin.  Conor has been very wobbly on his feet and he has a long way to go towards recovery so I was startled to see him at our big screen TV.  I was happy though that he had done so without falling and hurting himself. It was a sure sign of progress in his recovery.  His CBC Terry Seguin television walk demonstrated improvement physically and showed that Conor will not stay down, he will keep walking until he is fully recovered.  Two thumbs up for Conor ... and for Terry Seguin!

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Conor Is Home From the Hospital!




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 home with us. Yesterday I told Conor I would be back at 8 am this morning to take him home.  I arrived at 7:55 am and Conor Was waiting in the door way of his room ready to go home.

We really didn't know for the first few days if he would survive.  His negative reaction to the anti-seizure medication Lamotrogine resulted in a condition called Rhabdomyolysis which is as bad as it sounds.  Essentially, as I understand it the muscles break down and can cause renal (kidney) failure.

Conor is home now, safe and healthy. We all have lots of work ahead doing phsyio  with Conor as he recovers strength and coordination. Conor has shown substantial improvement each of the last several days and we are very optimistic that our Run, Jump, Fly boy will be back before too long. 

There are many, many people to thank for Conor's well being today. There are literally so many: all the hospital medical, nursing and support staff, our family doctor, people who know and work with Conor at school who visited with him in the hospital,  family friends and Conor's brother Brandon who was a big help at home and at the hospital on visits. 

We are happy, very, very happy to have our buddy home with us. Today is a great day in the Doherty home.

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Conor Is Safe Now But We Almost Lost Our Buddy: THANK YOU To ALL Who Saved Him!





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 of a negative Lamotrogine reaction and Conor was taken to the DECH (Doctor Everett Chalmers Hospital) emergency where he received immediate attention and transferred to the Intensive Care Unit, the ICU.  Conor's reactions have been very serious with risks in several key categories including risk to his kidneys and liver. Thanks to our family doctor and the excellent care and attention of the Emergency and ICU personnel our Buddy is still with us. Without their help he probably would not be.  Conor is still in the ICU but is expected to transfer to pediatrics in the next day or two. He has improved dramatically.  

To everyone involved with protecting and saving our buddy Conor his Mom and Dad say THANK YOU VERY MUCH, THANK YOU!

PS. We can hardly wait for the phsyio and other necessary recovery interventions to give us back our Run, Jump, Fly Boy:


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Autism and the Natural Environment: Conor Celebrates Earth Day Every Day


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. 





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New Brunswick's Extreme Inclusion Fantasy Harms Some Children With Severe Autism Challenges


Education and Early Childhood Development Minister Jody Carr 
 EECD/NBACL Event Focus on Inclusion: Walking in our shoes.

Minister Carr spoke for 40 minutes, repeating the word
 inclusion 30 - 40 times but never mentioning  evidence based 
accommodation of individual needs and challenges 

Premier David Alward's government has transferred control over New Brunswick education policies and practices to the NB Association for Community Living.  The NBACL is, beyond doubt, an organization of  people with good intentions committed to improving the lives of those with intellectual challenges.  I wish , as the father of a son with severe autism disorder and profound developmental delays I could support them.   Unfortunately the NBACL, and its federal counterpart the CACL, have subscribed for decades to a philosophical, non-evidence based, belief  that all children's best interests are served, protected and accommodated by placement in a regular classroom. Alternative learning arrangements are demonized as "segregation" when in fact such arrangements constitute evidence based accommodation of disabilities that some children, including my son with severe autistic disorder and profound developmental delays, need in order to gain access to a real education.  

In handing control over the education of children with disability challenges to NBACL the Alward government is acting in defiance of its obligation to ensure that education decision making represent the best interests of children founded on evidence.  It has placed many children with autism and other severe disability challenges at risk of being deprived of meaningful access to a real education, at risk of suffering mental and physical harm and at risk of being charged with criminal offences.  The Alward government has sacrificed some children with autism disorders and other disabilities to a fairy tale, one that is known to be untrue by many teachers, education assistants and parents.

In handing control over education of children with disability challenges to NBACL the Alward government  has abandoned democratic principles by surrendering one of government's most important responsibilities to an outside organization unaccountable to voters.  Equally concerning is the fact that the NBACL does not subscribe to modern, evidence based approaches to educating children with disabilities.

The NBACL adheres to one philosophical principle which it places above the best interests of individual students and which ignores the government's existing Inclusive Education Definition policy which requires education decision making based on the individual needs of the student and founded on evidence (not simplistic extreme inclusion philosophy) ... needs which in some cases, such as my severely autistic son, require education outside the regular classroom.  In any public discussion by NBACL reps of the Inclusive Education Definition no mention is made of the stipulation that inclusive education decision making is premised on  individual student needs  based on an a foundation of evidence requirement.  Nor is any mention made of the  fact that students with special challenges, autistic students in particular, in some instances very young, grade school students, are sent home from school when they can not function in NBACL inclusive classrooms. 

My son is severely autistic with profound developmental delays.  He has been well accommodated in Fredericton schools since he was removed from the regular classroom at our request. He was overwhelmed in the regular classroom and came home each day with bite marks on his hands until he was removed to an alternate, individualized instruction area where he worked with an autism trained Education Aide.  Some children for whom the regular classroom is not the answer are not as fortunate though; some are expelled from NB schools, sometimes under police escort, and some are charged with assault when their behavior, their inability to exist and function in the NBACL dominated school system results.  It is always the child who is blamed never the ridiculously simple, non evidence based, unthinking philosophy of the NBACL which is forced on parents, education assistants, teachers, resource teachers and education department officials who must fall in line and repeat the NBACL belief in extreme, everyone in the regular classroom fairy tale.

The children who are sent home and in some cases charged with criminal offences are powerful evidence that the simplistic everybody in the mainstream classroom philosophy is a failure that has hurt some children and impedes their access to a meaningful education contrary to the Education Act, the official Definition of Inclusive Education and contrary to principles enunciated in the Moore decision of the Supreme Court of Canada.

New Brunswick Inclusive Education Definition 

The New Brunswick government  Inclusive Education Definition  resulted from two inclusive education reviews: the MacKay and Ministerial Committee reviews. Both were initiated by the Lord government although the Ministerial Committee review continued under the Graham government during which time the Inclusive Education definition, after years of consultation with a wide range of stakeholders,  was concluded. I attended throughout both proceedings as an Autism Society New Brunswick representative,  and advocated, over the persistent opposition of NBACL representatives, for an evidence based approach to the individual education needs of students.  Those principles are set out throughout the Inclusive Education definition but particularly in the vision statement, the student centered principles and the accommodation sections (underlining added for emphasis):

"Inclusive Education

I. Vision

An evolving and systemic model of inclusive education where all children reach their full learning potential and decisions are based on the individual needs of the student and founded on evidence 

III. Overarching Principles

The provision of inclusive public education is based on three complementary principles:

(1) public education is universal - the provincial curriculum is provided equitably to all students and this is done in an inclusive, common learning environment shared among age-appropriate, neighbourhood peers;

(2) public education is individualized - the success of each student depends on the degree to which education is based on the student’s best interests and responds to his or her strengths and needs; and 

(3) public education is flexible and responsive to change.

Recognizing that every student can learn, the personnel of the New Brunswick public education system will provide a quality inclusive education to each student ensuring that: 

Student-centered 

1. all actions pertaining to a student are guided by the best interest of the student as determined through competent examination of the available evidence;

2. all students are respected as individuals. Their strengths, abilities and diverse learning needs are recognized as their foundation for learning and their learning challenges are identified, understood and accommodated; 

3. all students have the right to learn in a positive learning environment;


IV. Accommodation 

Accommodation means changing learning conditions to meet student needs rather than requiring students to fit system needs. Based on analysis, student needs may be met through individual accommodation or, in some cases, through universal responses that meet the individual student’s 
needs as well as those of other students.


The NBACL  now determines education policy and indoctrinates NB teachers and educators but it ignores the principles of evidence based accommodation of individual students and insists on regular classroom placement for all students regardless of needs.  Some may dispute these  points but they are  derived from repeated public statements:

2012 - David Alward's Admission That Community Living Association Sets Policy and Indoctrinates Senior Government Officials

New Brunswick Premier David Alward has publicly acknowledged the role of the New Brunswick Association for Community Living related organizations in setting inclusion and disability policy in New Brunswick as was made clear on the community living organizations' IRIS site. IRIS is the Institute for Research and Development and Inclusion in Society. It purports to be the "research" branch of Community Living Assocations across Canada. The IRIS board of directors consists of present and former Community Living Association officials from accross Canada including former NBACL official Lorraine Silliphant.  

In February 2012 IRIS spent a week indoctrinating high ranking New Brunswick education officials including Deputy Ministers and Assistant Deputy Ministers in the Community Living Association philosophy based policies of full mainstream classroom inclusion as was bragged about on the IRIS web site:

"
Premier Alward of New Brunswick acknowledges IRIS’ ‘Policy Making for Inclusion – Leadership Development Program’

New Brunswick Premier David Alward issued a letter Friday February 4th to all participants in the ‘Policy Making for Inclusion – Leadership Development Program’ that will be delivered in Fredericton by IRIS February 6-10 to senior officials with the Government of New Brunswick. The program is designed to assist policy makers achieve the government’s platform commitment to “enable New Brunswickers with disabilities to actively participate in all aspects of society and take their rightful place as full citizens.” With Deputy Ministers, Assistant Deputy Ministers, Human Resources Directors and Policy/Program Directors from across government participating in the week-long series of leadership development workshops, major strides will be taken towards creating a public service in New Brunswick ready and able to deliver on the government commitment to people with disabilities. In his letter, Premier Alward thanked The Institute “for developing this program to inform our public servants on the latest research on disability and inclusion…” A core resource for the program is the guide to Disability and Inclusion Based Policy Analysis just published by The Institute.

2013 - NBACL  Trains Principals and Teachers

"25 FEB 2013 11:00PM

SCHOOLS AND COMMUNITY LIVING ASSOCIATION PARTNER UP


SAINT JOHN – Schools in southern New Brunswick are seeking support from the New Brunswick Association for Community Living in training principals and teachers on inclusive education approaches.



Shana Soucy, manager of inclusive education for the association, said research has shown that without leaders who champion inclusive education, schools have a more difficult time implementing policies to make learning accessible to all students.
“I think we are doing a lot better with having the kids in the classroom, but are they really included in the lessons or are they just sitting there. We don’t want the segregation in the classroom, we want them to be included in the lesson,” she said."

NBACL Manager of Inclusive Education Shana Soucy identified problems, with inclusive education in New Brunswick, on the NBACL Blog site:


Even though Bill 85 was introduced in 1986 stating the full participation of all students in all aspects of school and community life, without regard to their disability or difficulty, we are still coming across many issues regarding exclusion:
  • Segregated classrooms and segregated programs across schools in New Brunswick
  • Modifications and accommodations are not being properly done to students’ lessons as noted in their Special Education Plans in order for them to have success in school
  • Some students are being excluded from school activities (ie: field trips)
  • Students are not only excluded from the regular classroom, they are not able to have lunch in the school cafeteria, instead, having their lunch with other students with a disability and Educational Assistants in the Resource room of the school
Some of what Ms Soucy describes as "segregated" classrooms  and "segregated" programs" are actually evidence based accommodations of the needs of some students with autism disorders like my son Conor who was overwhelmed in the regular classroom and who receives individualized ABA based instruction which is not assisted by being in a regular classroom with other students.  In other words the NBACL officials who now set education policies and train senior government officials, educators and teachers describe evidence based accommodation of the individual needs of some autistic students, including my son, as segregation, as inclusion "issues".   Ms Soucy insults and attacks accommodations specifically made to help children like my son with severe autism and intellectual disability challenges. 

NBACL Inclusve Education Manager Soucy's comments about the Resource room are an insult to students like my son who starts his day and has lunch in the resource room and enjoys tremendously his  time at the Resource Centre at Leo Hayes HS.  Ms. Soucy's issues with Resource Centres are not my son's issues.  Following is a picture of my son on St. Patrick's Day, March 17  2011 as he prepared to leave for school to start his day at the LHHS resource center.  He does not feel like he is being excluded or segregated at all.  He is fact being accommodated and enjoys his learning experience:



My happy, smiling son Conor can't wait to get to LHHS with a 
resource  center for some  purposes and individual environments 
for his  ABA based learning.  He also uses resources such as the
 gym, library, and swimming  pool in common with all students. 

For Conor these arrangements represent accommodation not segregation

Contrary to Ms Soucy's  non evidence, philosophy based, beliefs Conor loves his time at the resource centre and his so called "segregated" individualized, evidence based, ABA instruction.  Each evening he packs his lunch bag, places it in his school bag and when he gets up places it in front of the door to make sure it accompanies him to school.  These resources have been vital accommodations of his needs as a student with severe autistic disorder and profound developmental delays.  NBACL has clearly targeted for closure resource centers and individual areas of instruction in NB schools. I am very concerned that the fundamental ignorance of the NBACL adherents will deprive my son, and others whose needs are accommodated outside the regular classroom of these very valuable accommodations of their individual needs.
Imposition of NBACL Icon Gordon Porter's Simplistic, Extreme Inclusion Philosophy on Department of Education and Early Childhood Development 

Even without the indoctrination of high ranking government officials in a week long inclusion training/indoctrination session based on  Community Living policies, and even without government contracting out "disablity" training of teachers to the NBACL on an ongoing basis, NBACL has exercised a dominant role in the current NB government. Gordon Porter, an icon of the NBACL and federal CACL organizations, was a member of the Alward transition advisory team and subsequently conducted, together with NBCLA director Angela Aucoin,  yet another inclusion review which was not conducted objectively or transparently and simply reflects Mr. Porter's philosophy as stated by him during a Newfoundland appearance and reported in a Western Star article by Diane Crocker:

"Inclusion in the classroom ‘simple,’ says educator: 




CORNER BROOK — Gordon Porter believes inclusion is the most natural thing in the world. The educator and director of Inclusive Education Initiatives presented a session on inclusive education at the Greenwood Inn and Suites on Thursday. Porter, who is also the editor of the Inclusive Education Canada website inclusiveeducation.ca, spoke to parents, educators and agency professionals who deal with children with special needs at the pre-conference for the Newfoundland and Labrador Association for Community Living Conference taking place in the city today and Saturday. The session was sponsored by the Community Inclusion Initiative. 

 Porter’s session revolved around the theme of parents and teachers working together to make inclusion work.“It means kids go to their neighbourhood schools with kids their own age in regular classes,” said Porter.“If you’re seven years, old you go to the school just down the street. You go in a class with other seven-year-olds, and you’re supported if you have extra needs. “It’s so simple, it’s that simple,” said Porter."

Mr. Porter will forever cling to his belief that inclusion is simple if you just dump everyone in the regular classroom regardless of their needs.  There is nothing simple about autism though and I defy anyone to point to an informed source that would say there is. As the parent of a severely autistic child with profound developmental delays, sensory issues and, like many autistic children, capable of engaging in serious self-injury when overwhelmed I can not allow myself to wallow in such ignorance.  

The new DSM5 autism spectrum disorder criterion B expressly recognizes highly restricted, fixated interests, excessive resistance to change, abnormal in intensity or focus, hyper-or-hypo-reactivity to sensory aspects of environment, factors which, for some students with autism make the regular classroom an obstacle to learning and a risk to the child's safety:


Movie theater chains have recognized autism challenges and realities by trying to present sensory friendly showings of some movies.  Self-injurious behavior, (such as head banging and .. hand biting), and responsive (not planned) aggression to others, are recognized as a common problem for many with autism disorders.  The appropriate, evidence based approach to dealing with such issues is to provide a continuum of alternative learning arrangements, meaningful learning and functioning with the environment selected and individualized assessments of students skills and abilities to function within the setting selected,   as described on the web site of the University of North Carolina TEACCH program which has substantial influence in academic and professional autism circles:


  1. The TEACCH program recognizes the important value of preparing all persons with autism for successful functioning within society. Each person with autism should be taught with the goal of successful functioning with as few restrictions as is possible.
  2. Decisions about including children with autism into fully integrated settings must be made consistent with the principle of the "least restrictive environment" as a guiding principle. No person with autism should be unnecessarily or inappropriately denied access to meaningful educational activities. However, it should be noted that the concept of least restrictive environment requires that appropriate learning take place. Placement decisions also require that students be capable of meaningful learning and functioning within the setting selected.
  3. Activities which are inclusive for children with autism should be offered based on an individual assessment of the child's skills and abilities to function and participate in the setting. Inclusion activities are appropriate only when preceded by adequate assessment and pre-placement preparations including appropriate training. Inclusion activities typically need to be supported by professionals trained in autism who can provide assistance and objective evaluation of the appropriateness of the activity.
  4. Inclusion should never replace a full continuum of service delivery, with different students with autism falling across the full spectrum. Full inclusion should be offered to all persons with autism who are capable of success in fully integrated settings. Partial inclusion is expected to be appropriate for other clients with autism. And special classes and schools should be retained as an option for those students with autism for whom these settings are the most meaningful and appropriate.

Extreme inclusion is not simple, those who truly believe it is do not have actual first hand knowledge of an overwhelmed autistic child who bites his hand in one of Mr. Porter's inclusive classrooms, or one who reacts to the stresses of school and is sent home under police escort; in some instances to face criminal charges.  Inclusion may be simple for Mr. Porter but the simple truth is that he just ignores the evidence, all the evidence, any evidence which contradicts his cherished, fairy tale belief that the regular classroom solves all problems, even evidence of physical and mental harm that results from imposition of extreme inclusion policies on all students regardless of their needs.

At a Fredericton session during the Porter-Aucoin review discussion focused on integrating early autism intervention services into a smooth transition into the school system. ASNB was not invited to the Porter-Aucoin inclusion review session even though it was our advocacy that resulted in the establishment in NB of evidence based early autism intervention AND in the training of 4-500 education assistants and resource teachers at the UNB-CEL Autism Training program (also established in response to our ASNB parent advocacy) a program recognized by the Association for Science in Autism Treatment as a Canadian leader in provision of evidence based intervention for autistic children.

I became aware of the meeting and asked to be able to attend.  The discussion went around the table and when it came to me and I tried to speak for the first time I was told by the person conducting the session that they wanted someone else to be given a chance to speak.  I did not understand her statement since I had not addressed the group but I did not object.  The discussion went around the table again and when I tried again to speak I was again told that  they wanted others to be given a chance to speak. I had said nothing during the discussion.  I asked if they wished me to leave and was told no and given a chance to speak although nothing I said was reflected in the report that was issued by Porter-Aucoin.

As an ASNB rep I advocated persistently for evidence based accommodation of autistic students including those who required learning outside the regular classroom.  During the MacKay review Mr. Porter grew visibly annoyed with me and another ASNB rep Dawn Bowie because of our position.  Mr. Porter informed us that "you people should be thankful for what you have".  I have never doubted since that day that Mr. Porter's attitude toward educating children with disabilities, even children with autism, a subject with which I and Mrs. Bowie were much more learned and experienced, must conform to his everybody in the classroom beliefs.  Neither Mr. Porter, nor NBACL paid officers or representatives have ever deviated one iota from his fanatical obsession with the regular classroom.

NBACL Dominance in the Alward-Carr Government

NBACL domination of the Department of Education and Early Childhood Development is clear and indisputable.  Apart from Alward transition adviser Gordon Porter, NBACL Official Krista Carr is the wife of Early Education and Childhood Development Minister Jody Carr. Minister Carr's brother Jack Carr, also a member of the governing Alward Conservatives, is a former NBACL employee.   Danny Soucy is the Minister of Post-Secondary Education, Training and Labour and worked for both the New Brunswick Association for Community Living Inc. and the Canadian Association for Community Living from  1988 to his election in 2010.  Teachers who are most compliant with NBACL inclusion beliefs receive awards handed out by NBACL officials.

No one openly questions the philosophically based, non evidence based, policies of the NBACL which sets the Alward government's education policies.  Teachers, teacher aides/education assistants and other school personnel have told me off the record for many years, including during the MacKay and Ministerial Committee reviews that they sympathize with my concerns about accommodation of some children with autism, and other students who need an alternative place of learning, but they are unable to speak out.   The message is clear, those who conform to NBACL extreme inclusion doctrine will receive  awards handed out periodically by NBACL, those who don't ... well they have no choice but to conform.

Conclusion:

As a lawyer I have represented some students on the autism spectrum who have not been accommodated in the everybody in the classroom fantasy of the current Department of Education/NBACL administration. Some have suffered meltdowns for which they were blamed notwithstanding their known autism challenges.  Some   have been sent home under police escort and some have faced criminal charges.

The Autism Society of New Brunswick advocated during the MacKay and Ministerial Committee inclusion reviews for an evidence based approach to inclusive education which would see alternative learning arrangements for those who needed them.

In the current administration  philosophy trumps evidence based accommodation of individual needs.  Some students with autism disorders and other severe learning challenges are paying the price. 

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Conor's Autism Diagnosis 15 Years Ago Today




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 intensive early behavioral intervention was the only seriously evidence based intervention for autism as it remains today. 15 years  after Conor's initial diagnosis there are no substantial breakthroughs in understanding the biological basis of autism as the goal posts keep getting moved to allow the dominance of genetic autism research to continue and to continue with the lion's share of research dollars. Today, like 15 years ago, possible environmental contributors to autism are largely ignored and receive only a small fraction of the autism research dollars available. 

Even our understanding of autism diagnostic criteria are about to change again and for what reason?  The DSM5 does not hold out any serious hope of increasing our understanding of autism disorders, symptoms, causes or possible treatments.  The DSM5 will undoubtedly muddy the waters of autism research even further. Debates still rage over whether the astonishing increases in autism diagnoses of the last 15 years are real or whether they are caused by increased social awareness and ... the diagnostic definition changes of the 1994 DSM-IV.  NOW in Conor's 15th year post autism diagnosis yet another definition will be forced upon North Americans?  How can this possibly help autism research?  

Services have been obtained for autistic children in various parts of North America in the 15 Conor autism years.  Here in New Brunswick I joined with other parents fighting for early intervention, school and services for autistic adults.  We made significant gains in early intervention service delivery as recognized by Dr. David Celiberti of the Association for Science in Autism Treatment and in our schools.  In adult care nothing has changed as yet,  nothing at all. Here in New Brunswick, Canada, we still dump our severely autistic adults in hospitals, jails, hotels and foreign facilities rather than develop our own enhanced adult autism network.  Many others live in group homes with untrained staff. The gains we made in early ntervention and schools are being eroded and adult care has not been addressed at all.

If I sound gloomy I don't intend to be.  I will advocate for Conor as long as I am alive and I can only do so by  being honest.  His autism challenges are real and I will not betray him by pretending that his autism is a joy.  Conor himself is a tremendous joy and the proof is in the pictures you can find on this blog site and on my Facebook page which is open to public view.  See for yourself.  Conor's autism is no joy but he sure is. 

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Conor's Quiet Joy


Autism is a spectrum in many ways including the ways in which it is presented through various media. Everybody, particularly the main stream media,  loves the feel good stories of accomplishment.  We all suffer when we see images of self injurious behavior: common occurrences in severe autism although rarely reflected in the mainstream media or in autism research accounts.  The photos of my son Conor in the composite above show him during the recent holidays in a calm, happy mood that is seldom depicted in portrayals of autism. 

Despite the hustle and bustle that comes with the season Conor, who can become quite agitated by loud, strange noises and disrupted routines, was able to stay calm, enjoy the company of visitors and ...  be happy.  I had not viewed these images when they were taken and found them while saving some recent outdoor pictures.  

I can't explain to someone who does not have a severely autistic child with profound developmental delays how much moments like these mean to me. Conor's quiet joy is not the stuff of a CNN feature but capturing and revisiting it  makes this Dad very happy. 

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Conor's Fredericton 2012 - Part II

The Autism Society New Brunswick met on several occasions with senior civil servants during the administration of successive provincial governments to advocate for a modern residential care facility and system. The concept was to have a  facility located in Fredericton because of its central location and proximity to the autism expertise of  UNB, UNB-CEL and the Stan Cassidy Centre. The centre would provide an alternative to the general psychiatric hospital facilities at Centracare in Saint John and at the Regional Hospital in Campbellton.  The professional advisers at the centre could then provide services on as needed basis to group homes situated in local communities around the province for those with more moderate impairment levels.  

I have personally suggested that an additional reason for locating the central residential care and treatment facility in Fredericton  is Fredericton's outstanding natural environment.  So far, no luck. So far, immobility of thought and action have prevailed.  The ideological rigidity of the current Alward government  further preclude any development as described above and on the CBC web site by Clinical Psychologist and UNB Professor Emeritus (Psychology) Paul McDonnell.  The years long frustration though will not prevent me from continuing to advocate and do not prevent our family from enjoying the natural wonder of Fredericton.



































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