A Voice For Ryan
Donation protected
A Message On Behalf Of Ryan:
My name is Ryan Petrie.
If we met, I would not be able to tell you this. I am 21 years old but I can't say my own name, write it, or communicate to you who I am.
My family must speak for me because I am incapable of speech as the world around me knows it.
I have a severe form of autism that makes every day a frustrating battle to understand and interpret the world around me - and while people like to focus on what handicapped people CAN do, in my case what I cannot do paints a much better picture of what a day in my life is like.
I CANNOT attend college like other young adults my age. I CANNOT work at any job, I CANNOT date, fall in love or start a family of my own. I CANNOT manage money, pay bills, cook or clean for myself. I CANNOT do the things other young adults do - like backpack through Europe, or drive a car and I don't have any friends my own age because without communication, I have never been able to socialize.
Diagnosed at 2 years old, my doctors initially did not know if I would ever develop speech. At 5 years old I was enrolled in intensive one on one therapy but by age 6 I was cut off from the program after only a dozen therapy sessions. Most parents with autistic children and medical experts will say that I started too late, and was not given enough therapy to truly help me in any meaningful way. My doctors then suggested a guide dog but at $12,000.00, with no financial assistance, our family was not able to pursue this therapy for me.
Today I take 3 different medications to control my autism. I require constant supervision. Now that I am finished with public school, my parents have been looking for help to care for me during the day while they work to earn a living. My family has only been able to find one care facility willing to help me, the others all say my case is "too severe" for their facilities. The one facility that will help, is too expensive for my family. My biggest problem is, that at 21, most kids would be looking at leaving the nest for school or work or travel – with such limited options and lack of support or funding, I cannot afford to leave and without round the clock supervision, my parents may be forced to quit working.
So what CAN I do you ask? I may not be able to solve this problem, but I love my father, he is my world, I have lived with him for 21 years and he has always been by my side caring for me, watching my every move, keeping me happy and safe - making it hurt less when my frustration overcomes me. I know that people don’t last forever, that it will hurt to lose him someday and I don't want to be alone when that day comes. I want to live and adjust to life somewhere where support workers can help me with my daily frustrations and my dad can visit and take me on our special outings to my favourite places for as many years as he and I have left (and I hope there are many, many more). I want structure and protection from harming myself (because I do harm myself quite often whenever my routine is disrupted, and sometimes harm others too) - but they tell my father there is no room for me in their hospitals and private facilities - where will I go if I lose my dad earlier than I should? I am living proof that there are no guarantees in life - if they cannot cure me, why can't they help me live a safe life with the supervision that I need?
What I CAN do is ask for your help.
I have asked the public for help to bring awareness to my situation. Now I ask to please help change the rules for care facilities so that they are more affordable and cannot choose to ignore difficult cases like mine. I ask the government to please help me find the right care and support, whether a full time facility or day facility, either would help to keep my family working and help to keep me safe. And I ask for even more support for young children early in their diagnosis, because without early, aggressive, therapy for autistic children, the likelihood of becoming functional autistic adults diminishes.
When an autistic child grows up, and remains non-verbal with virtually no ability to function alone, they cannot live or be alone, and for the more severe cases of autism like mine, there is often nowhere for them to go.
I am Ryan Petrie, I cannot speak, but I hope that you hear my message today.
A Message From Ryan's Mom:
"Eighteen months ago, with the help of a CLM Mississauga case worker, we started looking for a day program for Ryan - I was aware of the long waiting lists and I also knew that Ryan's final day of public school was fast approaching.
Our son finished public school this summer, at the end of June. We had called more than 20 day programs within the area. We investigated these places, thinking MAYBE there would be a good chance he would be accepted. Out of 20 day programs, only two would be willing to help us.
The first is in Palgrave and the second is in Etobicoke. The other 18 day program providers would not accept Ryan because of his extreme behaviours - even with the aid of a one-on-one support worker, they said no.
The facility in Palgrave, White Birch, is 45 minutes away from Ryan's home in Mississauga - they provide life skills, speech and language programs. One problem we have encountered is that there are no available support workers to transport him to the facility, spend the day with him, and then transport him home. If they do find a support worker who can manage this, it will be three days a week only, due to lack of funding.
The facility in Etobicoke, New Haven, provides a one-on-one support worker, life skills, speech and language programs - but the cost is $5,000.00 every month, or $60,000.00 per year and this does not include the cost of transporting Ryan there and back.
Without government intervention to mitigate the expense of this necessary care - the majority of parents facing this reality for their autistic child - would never be able to manage these costs - the average Canadian salary is only $49,000.00 a year - making $60,000.00 per year in costs for a single family member - simply unobtainable.
Our government needs to know that this is what is happening to young adults with autism and their families and work to find solutions to help us all.
Thank you for your support, please continue to share my son's story with other families and sign our petition to the premier and health minister of Ontario. "
#avoiceforryan
Sincerely,
Ryan's Mom
(Susan Hayes-Petrie)
We sincerely thank you for your generous donation.
The Petrie Family.
My name is Ryan Petrie.
If we met, I would not be able to tell you this. I am 21 years old but I can't say my own name, write it, or communicate to you who I am.
My family must speak for me because I am incapable of speech as the world around me knows it.
I have a severe form of autism that makes every day a frustrating battle to understand and interpret the world around me - and while people like to focus on what handicapped people CAN do, in my case what I cannot do paints a much better picture of what a day in my life is like.
I CANNOT attend college like other young adults my age. I CANNOT work at any job, I CANNOT date, fall in love or start a family of my own. I CANNOT manage money, pay bills, cook or clean for myself. I CANNOT do the things other young adults do - like backpack through Europe, or drive a car and I don't have any friends my own age because without communication, I have never been able to socialize.
Diagnosed at 2 years old, my doctors initially did not know if I would ever develop speech. At 5 years old I was enrolled in intensive one on one therapy but by age 6 I was cut off from the program after only a dozen therapy sessions. Most parents with autistic children and medical experts will say that I started too late, and was not given enough therapy to truly help me in any meaningful way. My doctors then suggested a guide dog but at $12,000.00, with no financial assistance, our family was not able to pursue this therapy for me.
Today I take 3 different medications to control my autism. I require constant supervision. Now that I am finished with public school, my parents have been looking for help to care for me during the day while they work to earn a living. My family has only been able to find one care facility willing to help me, the others all say my case is "too severe" for their facilities. The one facility that will help, is too expensive for my family. My biggest problem is, that at 21, most kids would be looking at leaving the nest for school or work or travel – with such limited options and lack of support or funding, I cannot afford to leave and without round the clock supervision, my parents may be forced to quit working.
So what CAN I do you ask? I may not be able to solve this problem, but I love my father, he is my world, I have lived with him for 21 years and he has always been by my side caring for me, watching my every move, keeping me happy and safe - making it hurt less when my frustration overcomes me. I know that people don’t last forever, that it will hurt to lose him someday and I don't want to be alone when that day comes. I want to live and adjust to life somewhere where support workers can help me with my daily frustrations and my dad can visit and take me on our special outings to my favourite places for as many years as he and I have left (and I hope there are many, many more). I want structure and protection from harming myself (because I do harm myself quite often whenever my routine is disrupted, and sometimes harm others too) - but they tell my father there is no room for me in their hospitals and private facilities - where will I go if I lose my dad earlier than I should? I am living proof that there are no guarantees in life - if they cannot cure me, why can't they help me live a safe life with the supervision that I need?
What I CAN do is ask for your help.
I have asked the public for help to bring awareness to my situation. Now I ask to please help change the rules for care facilities so that they are more affordable and cannot choose to ignore difficult cases like mine. I ask the government to please help me find the right care and support, whether a full time facility or day facility, either would help to keep my family working and help to keep me safe. And I ask for even more support for young children early in their diagnosis, because without early, aggressive, therapy for autistic children, the likelihood of becoming functional autistic adults diminishes.
When an autistic child grows up, and remains non-verbal with virtually no ability to function alone, they cannot live or be alone, and for the more severe cases of autism like mine, there is often nowhere for them to go.
I am Ryan Petrie, I cannot speak, but I hope that you hear my message today.
A Message From Ryan's Mom:
"Eighteen months ago, with the help of a CLM Mississauga case worker, we started looking for a day program for Ryan - I was aware of the long waiting lists and I also knew that Ryan's final day of public school was fast approaching.
Our son finished public school this summer, at the end of June. We had called more than 20 day programs within the area. We investigated these places, thinking MAYBE there would be a good chance he would be accepted. Out of 20 day programs, only two would be willing to help us.
The first is in Palgrave and the second is in Etobicoke. The other 18 day program providers would not accept Ryan because of his extreme behaviours - even with the aid of a one-on-one support worker, they said no.
The facility in Palgrave, White Birch, is 45 minutes away from Ryan's home in Mississauga - they provide life skills, speech and language programs. One problem we have encountered is that there are no available support workers to transport him to the facility, spend the day with him, and then transport him home. If they do find a support worker who can manage this, it will be three days a week only, due to lack of funding.
The facility in Etobicoke, New Haven, provides a one-on-one support worker, life skills, speech and language programs - but the cost is $5,000.00 every month, or $60,000.00 per year and this does not include the cost of transporting Ryan there and back.
Without government intervention to mitigate the expense of this necessary care - the majority of parents facing this reality for their autistic child - would never be able to manage these costs - the average Canadian salary is only $49,000.00 a year - making $60,000.00 per year in costs for a single family member - simply unobtainable.
Our government needs to know that this is what is happening to young adults with autism and their families and work to find solutions to help us all.
Thank you for your support, please continue to share my son's story with other families and sign our petition to the premier and health minister of Ontario. "
#avoiceforryan
Sincerely,
Ryan's Mom
(Susan Hayes-Petrie)
We sincerely thank you for your generous donation.
The Petrie Family.
Organizer
Ryan Petrie
Organizer
Orillia, ON