How Our Lives Have Been Changed Forever by Love, Fear and Hope
by Robert Brown
Ottawa, Ontario
The Story of Robert and Christopher Brown
When I was asked if I would consider contributing to a collection of stories about autism, I was reluctant to contribute at first. In all honesty, things have not always been easy for our family and there have been times where I have tried to forget the anxious, fearful, angry and hopeless moments that autism has bestowed upon our family.
I am now ready to tell our story in the hope of it helping other families on their journey. I often wonder what might have happened to Christopher had we not persevered. I want no other family to feel isolated or alone on their path. I want to help others from losing hope and giving up. With permission from my good wife Sheila, I will explain to you how our family has been touched by autism and explore some of my personal hopes and fears about the future for our son and others on the spectrum.
I guess to tell our story properly, I need to start at the beginning.
Our son Christopher was born in 2000. As an infant and toddler it became apparent that Christopher was atypical. Christopher had no verbal language. Well-meaning grandparents suggested that “boys develop later than girls”. Later became much later. My wife and I made two trips to First Words before a referral service at CHEO (Children’s Hospital of Eastern Ontario) was made. Christopher made visits to the Speech Pathologist, the Audiologist, and lastly, when all the possibilities regarding his speech and hearing were explored, a referral was made to a Psychologist.
There were many delays. Months and months went by as we waited for Christopher to have a formal assessment done by a Psychologist. My wife and I agonized through this time period and Christopher was still not talking.
Finally, after months of worry and anxiety, an appointment and an assessment by Dr Heinz-Grove gave us our answer.
Christopher was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified or PDD/NOS. Our son was on the autism spectrum. My wife cried. It felt like we had been hit with something. Dazed, we were ushered into another room quickly to meet with a well-meaning social worker who was part of “the trauma team”. She helped us to fill out paperwork for 5 or 6 programs of which we had little knowledge of. She explained that all of the presented programs had waiting lists of several months to several years and this was only if Christopher qualified. With desperate hope, I applied for everything and subsequently received nothing. We found ourselves in the most vulnerable of positions, completely abandoned by the system.
In spite of feeling desperate and abandoned, I began to comb through the literature, looking at best practice. I decided that Intensive Behaviour Intervention or IBI was the best hope for our son Christopher. With optimism restored, we began to look into formalizing a program for our son. However, our expectations were quickly dashed when we realized it would be impossible to apply for funding without a formal report. We prayed a lot but I lost my faith. I was angry. Our marriage suffered. We almost divorced.
Five long and arduous months later the report finally arrived and I found myself standing outside of the Preschool Autism Program Office on Montreal Road in Ottawa. I was there an hour before the office opened and I was late for work. My tardiness didn’t matter, I was committed to Christopher. There on the doorstep we found ourselves waiting again.
We waited and waited and waited.
Though our research and in speaking with the professionals, we had been told that it was important for Christopher to play with other children. To give Christopher this critical opportunity we tried to enroll him with the Beacon Hill Nursery School. However, to our dismay, Jackie the manager said they were full. Broken-hearted, we returned home with what felt like another lost opportunity. Later that night there was a phone call from Jackie who said that she had been bothered all night by our situation. Jackie’s son was on the spectrum too. She told us that she would create a space for Christopher because she couldn’t turn him away. Jackie was Christopher’s first angel and our first connection to another parent who understood the challenges of raising a child on the spectrum.
Time marched on for all of us. Christopher turned 4 then 4 and-a-half. He still was not talking.
With Christopher close to school-age I began to prepare for his transition into the elementary school system and so I visited the elementary school in our neighbourhood armed with questions. After hearing about Christopher, they suggested a special education class that was home to 6 students and 1 teacher. It sounded like the range of developmental ability in the group was vast and where Christopher could possibly get lost in the shuffle of different learning styles. To help facilitate Christopher’s communication, the classroom was equipped with a communication board and the possibility of learning American Sign Language (ASL). I was devastated. None of these sounded like appropriate methods of communication for Christopher. I declined. My heart was set on trying IBI.
Finally, after an excruciating wait, we secured an appointment at CHEO. Christopher had a formal assessment and was accepted in the program formally known as the Pre-school Autism Program of Eastern Ontario. At 4 and-a-half years old, we were told that it was quite late to start an IBI program for Christopher, but we persevered and turned our basement into a classroom, becoming active participants in our son’s IBI program. Our first Therapist was Melissa. Working with Melissa caused Christopher to absolutely blossom. In time, he came out of his inner world and started to communicate with others. My wife and I found ourselves overjoyed as Christopher started to talk. We got our miracle. I regained my faith. Melissa was our second angel.
Christopher stayed in his IBI program for about a year. His days were split between IBI and Kindergarten half time.
After that year of intensive behavioural intervention, Christopher began to attend regular classes. He flourished and in Grade 6 he received the Spirit Award at Brother Andre Catholic School. It was the proudest day of his life. Currently he is in Grade 7 in a regular class at Lester B Pearson High School.
If I look back on how our lives have been changed by Christopher, it seems so simple, yet so profound. Christopher has helped me become a better father and a better person. I have become more patient and kinder. I find myself less judgmental and more accepting of people, generally.
On top of the gifts Christopher has brought into my life, our journey has also inspired me to advocate on behalf of other families touched by autism. In the process of finding supports for Christopher, I learned how fractured and limited accesses to services are for those families with loved ones on the spectrum. Waiting lists are too long which can put extreme and undue stress financially and emotionally on families who are at their most vulnerable. Unable to sit back and watch other families suffer as they fought for services for their children, I lobbied on both a provincial and federal level; picketing the Premier’s Office and on Parliament Hill. I wrote letters advocating for increased access to IBI services, the first of many I’ve included below.
May 3, 2005
Premier Dalton MCGuinty
Queens Park
Toronto,Ontario
Dear Sir / Madam:
Anger….despair…..and heartbreaking hopelessness……
Late at night in the quiet of my home after I put my autistic son Christopher to sleep this is how I feel. It often overwhelms me….sometimes I cry.
Perhaps I should just suffer in silence and be quietly forgotten by politicians but the time has come to tilt against windmills and shout into the wind.
A recent Ontario Supreme Court ruling by Justice Frances Kiteley said that the Ontario government “denied….(autistic) children their constitutional rights and dignity when it refused them treatment”
In a nutshell, the government was discriminating against handicapped children.
So what does the government do? It criticizes the court and the judge for telling the truth. Dalton McGuilty said that the courts may be “overstepping their (authority) in mandating….health services”
So our Premier admits that these are medically necessary treatments…”therapy”.
When a child has cancer we do not deny them medical care…….so why do we discriminate against children with cognitive disorders?
What is even more heartbreaking is that many of these children could be saved. And in the long run saving them is more cost effective.
Imagine an average treatment cost of 30,000 per child per year x 4-5 years. Cost of program ~ 150,000/ person.
With IBI therapy 50% of these children will be saved and live productive lives. Have a job, be a taxpayer, live independently, contribute to society…….verses almost 100% dependency without treatment.
Disability cheque (18-65~47 years x 12 months x 1,000 month). Cost of doing nothing~ 562,000/ person.
Additionally, 1 in 10 of these children are savants. So if we have 3,000 autistic children, and treat them 1,500 recover, and of these 150 are geniuses. Imagine the future contributions that 150 geniuses would make to our society.
Above all else we must remember that we have a moral/ethical responsibility to do the right thing.
Perhaps even sadder still is the fact that the public overwhelmingly supports this initiative and would not object to this medically necessary service.
Shame on the government for turning its back on these children. Its decision is incredibly shortsighted.
So in the quiet of your own home before you go to bed please say a prayer for my son Christopher and all the other autistic children who could have said their own prayers if given half a chance.
Sincerely,
Robert J Brown BA. MRR(T)
PS. Is it not an irony that the Ontario government trots out a 6.2 billion dollar program for education...
...but doesn't seem to care if autistic children learn anything at all.
After seeing how Christopher had benefited from IBI, I desperately wanted every child to have the same opportunity to develop to their fullest potential. I’ve been advocating directly for nine years now, and equitable access to services are still not available to families with children affected by ASD. It is tragic that children age-out on the wait lists waiting for important early intervention programs. The accountability of the government in this respect is disappointing. It has been a debacle of epic proportions. Yet I never give up hope that things will improve.
I joined Autism Ontario in (when) and or several years I sat on the Leadership Council of the Ottawa Chapter of Autism Ontario. I lobbied for and watched the Potential Programme grow. It was because of this program we were able to, for the first times ever, see a movie together as a family. We connected with other parents, we felt less isolated; we realized we were not alone. Connecting with the program helped to alleviate some of the stress from our lives. It was an affordable and meaningful service that really targeted the needs of our family.
My job as an advocate took on a life of its own. I was dedicated to providing information to other families and service providers. I helped to organize two conferences co-sponsored by CHEO/Autism Ontario/and the Francophone Autism Association that highlighted successful elementary evidence-based education programs. The first conference featured Dr. Tristram Smith’s ABA programs and the second conference explored Dr. Douglas Greer’s CABAS method.
In 2007, I was asked to sit on the Benchmark Experts Panel as a parent representative to help create Benchmark guidelines for clinical psychologists. I helped review 3000 studies and demanded an appeal process be put in place for parents. The government did not approve the guidelines’ but did implement an appeal process.
After years of dedicated volunteerism, my wife asked me to retire. In 2009, I stepped away from my advocacy role and took a much-needed break.
Feeling rejuvenated, I was invited to apply as a candidate for the Board of Directors of Autism Ontario in 2011. I accepted.
After a two year break, the call to return to an advocacy role with Autism Ontario was simple to answer. Autism Ontario advocates best practice models. Autism Ontario is forward thinking. Autism Ontario partners with academics and clinicians to do research and host conferences. Autism Ontario hosts workshops. Autism Ontario advocates for expanded IBI services. Autism Ontario lobbies for respite funding. Autism Ontario supported the work of Dr. Jonathan Weiss before it was de rigor. Autism Ontario has supported the work of Dr. Kevin Stoddart. Autism Ontario provides funding for camps designed to give children with ASD a supportive and recreational experience. Autism Ontario works cooperatively with other professional agencies and has the respect of government ministries. Autism Ontario is on the forefront of advocating for vocational needs, housing needs, and mental health services for adults on the spectrum. The Potential Programme has reached into communities all across this province and helped provide support to families in need. Our family was one of them.
From very small and humble beginnings the organization has grown to be the single largest advocate for families and individuals on the spectrum in Ontario. Simply put, Autism Ontario is a measured but reasoned voice for families and individuals on the spectrum.
Let’s think about this in context and think about the next 40 Years. There are so many Autism Ontario Chapters, both large and small, across this province supporting individuals on the spectrum. For several years I worked with a local chapter. We fundraised, held social events, ran summer camps, parent support groups, adult support groups, and hosted educational conferences. Each Chapter supports hundreds of volunteers working together to support thousands of individuals in their communities. This is the real spirit of Autism Ontario and its true strength: the Chapters and their volunteers.
Autism Ontario is community-centred, forward thinking and visionary. This is why I volunteer my time to work with them. It has been a wonderful experience working alongside so many dedicated and professional people focused on creating a better tomorrow.
I still have a lot of fears for Christopher as he gets older. The supports as he grows into adulthood are not in place. Is going to take a lot more work to build communities where our children can get the adequate supports they need and have meaningful work and adequate housing. I have always believed that the mark of any great civilization is not its monuments or buildings but how it provides dignity and support to those least able to care for themselves.
As an optimist I am ever hopeful that this day will arrive.
When I was asked if I would consider contributing to a collection of stories about autism, I was reluctant to contribute at first. In all honesty, things have not always been easy for our family and there have been times where I have tried to forget the anxious, fearful, angry and hopeless moments that autism has bestowed upon our family.
I am now ready to tell our story in the hope of it helping other families on their journey. I often wonder what might have happened to Christopher had we not persevered. I want no other family to feel isolated or alone on their path. I want to help others from losing hope and giving up. With permission from my good wife Sheila, I will explain to you how our family has been touched by autism and explore some of my personal hopes and fears about the future for our son and others on the spectrum.
I guess to tell our story properly, I need to start at the beginning.
Our son Christopher was born in 2000. As an infant and toddler it became apparent that Christopher was atypical. Christopher had no verbal language. Well-meaning grandparents suggested that “boys develop later than girls”. Later became much later. My wife and I made two trips to First Words before a referral service at CHEO (Children’s Hospital of Eastern Ontario) was made. Christopher made visits to the Speech Pathologist, the Audiologist, and lastly, when all the possibilities regarding his speech and hearing were explored, a referral was made to a Psychologist.
There were many delays. Months and months went by as we waited for Christopher to have a formal assessment done by a Psychologist. My wife and I agonized through this time period and Christopher was still not talking.
Finally, after months of worry and anxiety, an appointment and an assessment by Dr Heinz-Grove gave us our answer.
Christopher was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified or PDD/NOS. Our son was on the autism spectrum. My wife cried. It felt like we had been hit with something. Dazed, we were ushered into another room quickly to meet with a well-meaning social worker who was part of “the trauma team”. She helped us to fill out paperwork for 5 or 6 programs of which we had little knowledge of. She explained that all of the presented programs had waiting lists of several months to several years and this was only if Christopher qualified. With desperate hope, I applied for everything and subsequently received nothing. We found ourselves in the most vulnerable of positions, completely abandoned by the system.
In spite of feeling desperate and abandoned, I began to comb through the literature, looking at best practice. I decided that Intensive Behaviour Intervention or IBI was the best hope for our son Christopher. With optimism restored, we began to look into formalizing a program for our son. However, our expectations were quickly dashed when we realized it would be impossible to apply for funding without a formal report. We prayed a lot but I lost my faith. I was angry. Our marriage suffered. We almost divorced.
Five long and arduous months later the report finally arrived and I found myself standing outside of the Preschool Autism Program Office on Montreal Road in Ottawa. I was there an hour before the office opened and I was late for work. My tardiness didn’t matter, I was committed to Christopher. There on the doorstep we found ourselves waiting again.
We waited and waited and waited.
Though our research and in speaking with the professionals, we had been told that it was important for Christopher to play with other children. To give Christopher this critical opportunity we tried to enroll him with the Beacon Hill Nursery School. However, to our dismay, Jackie the manager said they were full. Broken-hearted, we returned home with what felt like another lost opportunity. Later that night there was a phone call from Jackie who said that she had been bothered all night by our situation. Jackie’s son was on the spectrum too. She told us that she would create a space for Christopher because she couldn’t turn him away. Jackie was Christopher’s first angel and our first connection to another parent who understood the challenges of raising a child on the spectrum.
Time marched on for all of us. Christopher turned 4 then 4 and-a-half. He still was not talking.
With Christopher close to school-age I began to prepare for his transition into the elementary school system and so I visited the elementary school in our neighbourhood armed with questions. After hearing about Christopher, they suggested a special education class that was home to 6 students and 1 teacher. It sounded like the range of developmental ability in the group was vast and where Christopher could possibly get lost in the shuffle of different learning styles. To help facilitate Christopher’s communication, the classroom was equipped with a communication board and the possibility of learning American Sign Language (ASL). I was devastated. None of these sounded like appropriate methods of communication for Christopher. I declined. My heart was set on trying IBI.
Finally, after an excruciating wait, we secured an appointment at CHEO. Christopher had a formal assessment and was accepted in the program formally known as the Pre-school Autism Program of Eastern Ontario. At 4 and-a-half years old, we were told that it was quite late to start an IBI program for Christopher, but we persevered and turned our basement into a classroom, becoming active participants in our son’s IBI program. Our first Therapist was Melissa. Working with Melissa caused Christopher to absolutely blossom. In time, he came out of his inner world and started to communicate with others. My wife and I found ourselves overjoyed as Christopher started to talk. We got our miracle. I regained my faith. Melissa was our second angel.
Christopher stayed in his IBI program for about a year. His days were split between IBI and Kindergarten half time.
After that year of intensive behavioural intervention, Christopher began to attend regular classes. He flourished and in Grade 6 he received the Spirit Award at Brother Andre Catholic School. It was the proudest day of his life. Currently he is in Grade 7 in a regular class at Lester B Pearson High School.
If I look back on how our lives have been changed by Christopher, it seems so simple, yet so profound. Christopher has helped me become a better father and a better person. I have become more patient and kinder. I find myself less judgmental and more accepting of people, generally.
On top of the gifts Christopher has brought into my life, our journey has also inspired me to advocate on behalf of other families touched by autism. In the process of finding supports for Christopher, I learned how fractured and limited accesses to services are for those families with loved ones on the spectrum. Waiting lists are too long which can put extreme and undue stress financially and emotionally on families who are at their most vulnerable. Unable to sit back and watch other families suffer as they fought for services for their children, I lobbied on both a provincial and federal level; picketing the Premier’s Office and on Parliament Hill. I wrote letters advocating for increased access to IBI services, the first of many I’ve included below.
May 3, 2005
Premier Dalton MCGuinty
Queens Park
Toronto,Ontario
Dear Sir / Madam:
Anger….despair…..and heartbreaking hopelessness……
Late at night in the quiet of my home after I put my autistic son Christopher to sleep this is how I feel. It often overwhelms me….sometimes I cry.
Perhaps I should just suffer in silence and be quietly forgotten by politicians but the time has come to tilt against windmills and shout into the wind.
A recent Ontario Supreme Court ruling by Justice Frances Kiteley said that the Ontario government “denied….(autistic) children their constitutional rights and dignity when it refused them treatment”
In a nutshell, the government was discriminating against handicapped children.
So what does the government do? It criticizes the court and the judge for telling the truth. Dalton McGuilty said that the courts may be “overstepping their (authority) in mandating….health services”
So our Premier admits that these are medically necessary treatments…”therapy”.
When a child has cancer we do not deny them medical care…….so why do we discriminate against children with cognitive disorders?
What is even more heartbreaking is that many of these children could be saved. And in the long run saving them is more cost effective.
Imagine an average treatment cost of 30,000 per child per year x 4-5 years. Cost of program ~ 150,000/ person.
With IBI therapy 50% of these children will be saved and live productive lives. Have a job, be a taxpayer, live independently, contribute to society…….verses almost 100% dependency without treatment.
Disability cheque (18-65~47 years x 12 months x 1,000 month). Cost of doing nothing~ 562,000/ person.
Additionally, 1 in 10 of these children are savants. So if we have 3,000 autistic children, and treat them 1,500 recover, and of these 150 are geniuses. Imagine the future contributions that 150 geniuses would make to our society.
Above all else we must remember that we have a moral/ethical responsibility to do the right thing.
Perhaps even sadder still is the fact that the public overwhelmingly supports this initiative and would not object to this medically necessary service.
Shame on the government for turning its back on these children. Its decision is incredibly shortsighted.
So in the quiet of your own home before you go to bed please say a prayer for my son Christopher and all the other autistic children who could have said their own prayers if given half a chance.
Sincerely,
Robert J Brown BA. MRR(T)
PS. Is it not an irony that the Ontario government trots out a 6.2 billion dollar program for education...
...but doesn't seem to care if autistic children learn anything at all.
After seeing how Christopher had benefited from IBI, I desperately wanted every child to have the same opportunity to develop to their fullest potential. I’ve been advocating directly for nine years now, and equitable access to services are still not available to families with children affected by ASD. It is tragic that children age-out on the wait lists waiting for important early intervention programs. The accountability of the government in this respect is disappointing. It has been a debacle of epic proportions. Yet I never give up hope that things will improve.
I joined Autism Ontario in (when) and or several years I sat on the Leadership Council of the Ottawa Chapter of Autism Ontario. I lobbied for and watched the Potential Programme grow. It was because of this program we were able to, for the first times ever, see a movie together as a family. We connected with other parents, we felt less isolated; we realized we were not alone. Connecting with the program helped to alleviate some of the stress from our lives. It was an affordable and meaningful service that really targeted the needs of our family.
My job as an advocate took on a life of its own. I was dedicated to providing information to other families and service providers. I helped to organize two conferences co-sponsored by CHEO/Autism Ontario/and the Francophone Autism Association that highlighted successful elementary evidence-based education programs. The first conference featured Dr. Tristram Smith’s ABA programs and the second conference explored Dr. Douglas Greer’s CABAS method.
In 2007, I was asked to sit on the Benchmark Experts Panel as a parent representative to help create Benchmark guidelines for clinical psychologists. I helped review 3000 studies and demanded an appeal process be put in place for parents. The government did not approve the guidelines’ but did implement an appeal process.
After years of dedicated volunteerism, my wife asked me to retire. In 2009, I stepped away from my advocacy role and took a much-needed break.
Feeling rejuvenated, I was invited to apply as a candidate for the Board of Directors of Autism Ontario in 2011. I accepted.
After a two year break, the call to return to an advocacy role with Autism Ontario was simple to answer. Autism Ontario advocates best practice models. Autism Ontario is forward thinking. Autism Ontario partners with academics and clinicians to do research and host conferences. Autism Ontario hosts workshops. Autism Ontario advocates for expanded IBI services. Autism Ontario lobbies for respite funding. Autism Ontario supported the work of Dr. Jonathan Weiss before it was de rigor. Autism Ontario has supported the work of Dr. Kevin Stoddart. Autism Ontario provides funding for camps designed to give children with ASD a supportive and recreational experience. Autism Ontario works cooperatively with other professional agencies and has the respect of government ministries. Autism Ontario is on the forefront of advocating for vocational needs, housing needs, and mental health services for adults on the spectrum. The Potential Programme has reached into communities all across this province and helped provide support to families in need. Our family was one of them.
From very small and humble beginnings the organization has grown to be the single largest advocate for families and individuals on the spectrum in Ontario. Simply put, Autism Ontario is a measured but reasoned voice for families and individuals on the spectrum.
Let’s think about this in context and think about the next 40 Years. There are so many Autism Ontario Chapters, both large and small, across this province supporting individuals on the spectrum. For several years I worked with a local chapter. We fundraised, held social events, ran summer camps, parent support groups, adult support groups, and hosted educational conferences. Each Chapter supports hundreds of volunteers working together to support thousands of individuals in their communities. This is the real spirit of Autism Ontario and its true strength: the Chapters and their volunteers.
Autism Ontario is community-centred, forward thinking and visionary. This is why I volunteer my time to work with them. It has been a wonderful experience working alongside so many dedicated and professional people focused on creating a better tomorrow.
I still have a lot of fears for Christopher as he gets older. The supports as he grows into adulthood are not in place. Is going to take a lot more work to build communities where our children can get the adequate supports they need and have meaningful work and adequate housing. I have always believed that the mark of any great civilization is not its monuments or buildings but how it provides dignity and support to those least able to care for themselves.
As an optimist I am ever hopeful that this day will arrive.
