Conor Loves Working Hard Washing Windows and Has Benefited Greatly from Doing So

Conor's old school lunch bag below. He was accommodated outside the mainstream classroom at our request and he loved school and would often put his lunch bag on the kitchen counter to tell us he wanted to be ready for school. Today he put it up there again because he loves his activity with Jobs Unlimited especially in the mornings at the Willie O'Ree where he washes windows. He was letting me know he wanted to go to the WillieO'Ree.

When he found out there was no JU and no Willie O'Ree tomorrow because of Thanksgiving he was quite agitated at times.

Conor requires an attendant from JU with him at all times for his safety. He LOVES washing the windows at the Willie O'Ree where his physical AND mental health have prospered and the anxiety he felt in his last year of High School when he knew he was finishing school has been beaten back.

People who don't know my son's realities would expect a full pay employment relationship but that is not real with an aide required at all times and staff to maintain the organization. Conor has benefited greatly by providing the service he does as many volunteers do for charities and churches. If the extremists I heard recently at an otherwise very informative and positive disability meeting attempt to impose their will to prohibit his volunteer service he loves I WILL FIGHT THEM.

Q & A from  Facebook:

Q:  Was this the meeting Friday evening? What’s this about?

A:Yes this was the Friday evening. There was a discussion about advocating for laws to prohibit situations like my son's. There was no room for exceptions and one person got very loud and insulting and would not listen to the information I presented that Conor could not do this without a full time aide who requires payment, that my son has greatly benefited physically and mentally from being able to do this work. I left the meeting because there was no real dialogue and I am not going to sit and be told by a stranger what is best for the son I have cared for his entire life and do so every day. .The general discussion on mental health and lack of MH services was very informative and moving. But the person who was insulting could not understand that my son's mental health has benefited greatly from what is essentially volunteer work. In fact he is very happy as you can see in these pictures.

UNBCEL Atlantic Provinces Autism Conference Continues Exclusion of the Voices of Adults with Autism and Intellectual Disability

I received another advertisement message from the Atlantic Provinces Autism Conference which is hosted by UNBCEL this year and is continuing the APAC policy of excluding parents of adults with autism and intellectual disability and I responded again:

Unfortunately "autism" as used by the APAC does not include those with autism and intellectual disability. The APAC is continuing its exclusion of NB parents of adults with autism and Intellectual disability from their speakers list. We speak for our autistic adults with ID who can not speak for themselves. We do so with the knowledge gained from raising and providing 24/7 care for them throughout their lives. We do not draw a salary for our efforts and do not seek financial gain for doing so. We fight for the services they need as we did for the early autism services which resulted in the establishment of the UNBCEL autism program which is hosting this APAC conference (how soon they forget). We fought for autism trained aides and hundreds were trained. We fought successfully for the reversal of the decision to close the Stan Cassidy Centre autism team which now provides services to age 19. NB adults with autism and Intellectual disability have been warehoused at the Restigouche Hospital, where patient abuse is well documented (Ombud Report, CBC ) far from families and contrary to the United Nations Convention on the Rights of Persons with Disabilities.

NOTE: The UNBCEL Atlantic Provinces ""Autism"" Conference. more accurately described as the Atlantic Provinces Autism Without Intellectual Disability Conference appears to be an accurate reflection of the autism research bias which according to a recent meta analysis excludes subjects with autism AND intellectual disability in 94% of studies assessed. 

See Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis.

Current global estimates suggest the proportion of the population with autism spectrum disorder (ASD) who have intellectual disability (ID) is approximately 50%. ..... Meta-analysis estimated 94% of all participants identified as being on the autism spectrum in the studies reviewed did not have ID (95% CI 0.91-0.97).

CONCLUSIONS:

We found selection bias against ID throughout all fields of autism research. We recommend transparent reporting about ID and strategies for inclusion for this much marginalised group.

YOU Are Invited - It Takes a Village to Support Adults with Autism Spectrum Disorder August 18 1:00 - 3:30 the VILLE Cooperative - 241 Canada Street, Fredericton

“It Takes a Village to Support Adults with Autism Spectrum Disorder.”

Autism Advocacy New Brunswick is pleased to announce we will be hosting a meeting concerning the lack of Autism Adult Care Services in the Province of New Brunswick. 

This will be held on Saturday, August 18  from 1:00-3:30 pm at the VILLE Cooperative, 241 Canada St., Fredericton. 

We are extending an invitation to parents, self-advocates, and families, as well as persons who have a strong interest in supporting adults with Autism Spectrum Disorder. 

We have three guest speakers and they will be speaking on the following topics:

1. Harold Doherty, is a father of an adult son with Autism, a long- time Autism advocate and recipient of the Queen Elizabeth II Diamond Jubilee Medal (Autism advocacy) who is currently practicing law in Fredericton. He will speak on the history of Autism services in the Province of New Brunswick, and will illustrate the advancements that have been made in the past 15 years. Harold will also speak about the current lack of services for adults who have Autism Spectrum Disorder. His talk will address issues in regards to adults who have high needs, with limited to zero communications, who are intellectually challenged, and may have an existing co-morbid condition such as a seizure disorder. He will talk about the challenges that he and his family face with his own son on a daily basis. He will also emphasize the importance of being a unified voice if changes are to be made in this province. Parents, self-advocates and the community must be united, and become the voice for the adult population.

2. Lila Barry is a mother of an adult son who has Autism Spectrum Disorder. Lila is a former president of Autism Society New Brunswick, and a retired Executive Director of Autism Resources Miramichi. The scope of her career covers a span of 42 years, working in the field with persons with special needs. Currently, she volunteers at Autism Resources Miramichi, and her volunteer work encompasses advocacy within the Province of New Brunswick. A typical example is preparing for today’s event. She is a behind the scene girl, and is passionate in supporting persons with ASD. Lila will speak on her experiences raising, and working with children and adults who live with Asperger’s Syndrome or HFA.

3. Dr. Paul MacDonnell is a retired psychologist who specializes in Autism Spectrum Disorder. As a Professor Emeritus in Psychology at the University of New Brunswick, he has distinguished himself in his career. He has received international recognition for his research, and has been viewed as a model for others in the field. In 2004 the government of the day funded a province–wide Autism Intervention Training program, for preschool-aged children. The lead consultant was Dr. Paul MacDonnell. Years later, he was also the lead consultant when funding was made available to train Educational Assistants and Methods and Resource Teachers within the Department of Education. In 2015 Dr. Paul MacDonnell submitted a proposal on Adult Autism Care Services to the Province of New Brunswick. This proposal is called, “It Takes a Village to Support Adults with Autism Spectrum Disorder.” In simple terms, it is a comprehensive document that addresses all the needs of the adult population. Dr. Paul MacDonnell will be giving an overview of the proposal. It encompasses the needs of the full spectrum, including the needs of severely affected adults living with Autism, all the way to the adults who are living with Asperger’s Syndrome or High-Functioning Autism. The needs vary on the spectrum so it’s important to recognize that not all persons have the same needs and challenges.

Please note, as of today’s date Dr. Paul MacDonnell’s submission paper remains in the hands of the Province of New Brunswick. There has been no response or action, nor do we anticipate any in the near future without everyone's involvement. It is only through efforts and dedication of parents, self-advocates and community that changes will be made. Please be the voices these adults need you to be. The announcements of the Preschool Autism Intervention Training Program and the training for Educational Assistants, Method and Resources Teachers, Autism Clinical Supervisors for School-Aged Children were announced a few weeks prior to 2 elections. This is why we must give voice now, otherwise there is a high likelihood the inaction will continue.

We encourage all parents to attend (who have sons or daughters, who are preschool age, a teen or adolescent, caregivers,  a young adult or middle-age adult or senior who are living with Autism Spectrum Disorder.)

“A child with Autism, grows into an adult with Autism.”

My Son Conor Is Why I Speak Out For an Adult Autism Residential Care Network

My son Conor is why I fight for an autism network with a centre in Fredericton, the location of NB's autism expertise, that has won international recognition over the last 20 years. I will be speaking tomorrow June 16 at 1 pm at the NBCC Miramichi campus on this topic along with fellow autism parent advocate Lila Barry and NB autism expert Paul McDonnell. The centre would provide permanent residential care, treatment and continuing education and interaction with the community for the most severely challenged. Facilities in other areas of the province would provide similar services depending on the needs of the individuals. These specific pictures show Conor on Fredericton's North Riverfront Trail 3 years ago. Conor's autism, intellectual disability and epilepsy bring many challenges but he brings his Dad great joy every day, every single day.