S.Au.S Founder Audrey Burt leading the 2019 Autism Awareness RunBuilding a charitable organization for families living with autism Audrey Burt April 24, 2020 2226 My son’s life has value beyond measure Editor’s Note: April is Autism Awareness Month, and we are sharing an article by Audrey Burt, mother of a boy with severe autism. Audrey founded S.Au.S (Soutien Autism Support) on the South Shore to provide services for her son, other autistic children and ‘autism’ families like hers; where promised government support simply has not been provided. Audrey’s story is both heart-breaking and inspirational. During one conversation, Audrey told me that when asked if she could have a do-over without a child with an Autism Spectrum Disorder, her unequivocal response is: “I would 100% keep my life with my son with autism! Perhaps in an odd way, this has been a gift to me.” While 90% of marriages with an autistic child end in divorce, Audrey and her husband have stayed together. “We’re committed to our family and to each other.” My work as an autism activist spans over 10 years; but my advocacy started earlier, when my toddler Keyan was diagnosed with infantile autism. I didn’t know what the future held for my son but I knew as his mother I was determined to give him all the tools necessary for him to live his best life. During this process I had to fully learn the meaning of “action research” and apply it to the work I have already been doing. Manisha, Kunal, Keyan and Audrey at the conclusion of Audrey’s participation in the 2019 Albany Marathon Who am I? I am a woman, wife, mother, daughter, sister, friend, marathon runner, Boston Marathoner, An Ironman 70.3 Finisher, A Mama Bear blogger, activist and founder of a charitable organization, Soutien Autism Support (S.Au.S). Of all the titles assigned to me the one that is the most important and has the most influence over my life is the role of “mom”. Before having children, I vowed to myself that I would be the best mom I could be and that meant raising children who felt loved, protected, valued, heard and supported, throughout their lives. Becoming a mother naturally made me want to be a better person but becoming a mom to a boy with severe autism (level 3) forced me to best the human being I could be. It didn’t take long after Keyan’s diagnosis that I realized life for him and our family would be a steady uphill battle; against peers, family, friends, the government, the health care system, the educational system and even with self. Once I had a clear big picture of my son’s limitations and his future as a non-verbal individual I started to call myself “the voice for the voiceless”. I needed to be Keyan’s voice, advocate, protector, ears, and biggest cheerleader. And if I was going to be all those things for my son then I thought why not for others too? Through self-study I came to the conclusion that I had the power to “be the change I want to see in the world” (Arun Ghandi – 2014) and I could help families who were living the same reality. “Having a child like this has elevated every part of my being” What is autism? “Autism Spectrum Disorder is defined as a neurodevelopmental condition which is expressed as a deficit in social interactions, unusual developmental of social communications and a characteristic of limited and repetitive behaviors, interests and activities, patterns of thought and behavior”. (INSPQ – Institut National de Santé Publique du Québec – Autism SpectrumDisorder Surveillance in Québec – October 2017 – American Psychiatric Association, 2013) There is no cure for autism (Autism Spectrum Disorder Among children and Youth in Canada 2018) is a report of the national autism spectrum disorder surveillance system. It is a complex life-long condition that impacts not only the person with ASD, but their families, caregivers and communities. Each person with an Autism Spectrum Disorder (ASD) is unique and will have different symptoms, deficits and abilities. Because of the range of characteristics, this condition is named a “spectrum” disorder, where one’s abilities and deficits can fall anywhere along a spectrum, and thereby support needs may range from none to very substantial. According to the Ministre de la Santé et des Services sociaux du Québec, in 2015, 1 in every 76 children between the ages of 4 and 17 are on the Autism Spectrum Disorder scale, representing an 850% increase since the 2001-2002 census. The first few months following Keyan’s diagnosis (On June 27th, 2005 at age 18 months) were the hardest. We were put on a waiting list for him to receive services and told the average wait time was 1 year. As his mom I felt hopeless because I knew early intervention was key. Research shows that treatment is most effective before five years of age when a child’s brain is still forming, malleable and has the most plasticity; therefore giving treatments a better chance at being effective in the long term. Early interventions not only give children the best start possible, but also the best chance of developing to their full potential. Therefore, the sooner a child gets help, the greater the chance for learning and progress. (Eunice Kennedy Shriver National Institute of Child Health and Human Development Website). I refused to accept what was happening to my son. The fact that he was being denied his basic human rights (in this case access to therapy) by the Quebec government didn’t sit well with me and this is where my advocacy journey begins. As Keyan’s mom I wasn’t going to wait around for the Quebec Health Care system to care of my child. I took matters into my own hands. While waiting for the public system, to provide Keyan with services, we spent an estimated $30,000 in therapies the first year following his diagnosis. The list of therapies/specialists included: Psychologist, ABA therapy, Speech therapy, Occupational Therapy, Special food (GF-CF Diet), Vitamin(s) and DAN doctor consultations /testing. My husband and I were convinced we were going to “fix” our son – there is a mass of literature on the internet (poisonous rhetoric) that claims it can be done. Obviously, the $30 000 a year was not a sustainable plan; eventually it would put us in financial ruin. I set out to knock down every door and bully my way into getting my son the services the government owed him and I finally succeeded. It is a well known fact that the government may provide services but they are rarely adequate or enough. I told myself once my son was taken care of I would go about helping other families faced with the same horrible reality of waiting to have their child diagnosed or essential receive services. A few years after my son’s diagnosis; I got tired of the doctor, psychologist and therapist visits. As a family we were exhausted – instead of bringing our children to community activities our lives revolved around autism. We have a society that makes it so that when you have a child with special needs you are exempt from a normal life and the focus remains on therapies. There comes a point when you realize it is not a sustainable way to live. This notion hit me hard one day when I was bringing Manisha to her ballet class at the local community center. While my heart was full for her it equally broke for Keyan. The little boy with autism who was left behind, with nowhere to go. I thought all children, regardless of their life circumstance, should have access to sports/leisure/fun. All children should be granted the opportunity to play and be around their peers. It seemed so unfair. Not only was my son limited by the brain he was born with but he was also limited by what society dictated. This was the beginning of my life’s work – my life’s purpose. Frustrated that my son was being denied access to fundamental building blocks led me to question society and how anyone could morally cast aside another human being? I feared for what my son’s life would look like if I didn’t advocate for him. I knew if I didn’t stand up for my son; no one else would. I took baby steps in my advocacy. What started off as a mere idea – an awareness campaign, turned into an annual fundraiser (Autism Awareness run est. 2009) and then turned into a charitable organization (Soutien Autism Support – S.Au.S. est. 2011) which has helped hundreds of families living with children on the autism spectrum. With outpouring of local community (Candiac- South Shore of Montreal, Quebec) support and the encouragement of family and friends I gathered the courage to become the Founder of S.Au.S. I have to admit I did things backwards. Usually people start by sourcing funding before starting a project. Not me! When I decided to organize that Autism Awareness Run I was operating on a zero-dollar budget. We as a family spent every last dollar on our son’s therapy and we started to feel the financial stress. I hadn’t made a business plan and had no idea what I was doing but it was bigger than me – I had to do this. The 2010 edition of the Autism Awareness Run was the first time I attempted to raise money for the cause. I knew firsthand there wasn’t an organization on the South Shore worthy of the funds. I did what I thought was best and decided to hire staff and solicit participation in S.Au.S.’ very first leisure program for children on the autism spectrum. Our programs blossomed from there… For the first five years of S.Au.S.’ existence I was in charge of the day-to-day operations out of an office in the basement of my home. I had friends help organize the run but that accounted for 20% of the actual work it took to run the organization. For awhile I was high on the success, but as the number of programs increased I began to feel worn down. Kunal Saha, Bagou our Mira Dog and Keyan Saha I made the decision to hire someone to help me with the operations. It was the step that freed up some of my time so I could build upon and improve our programs. Eventually I would need to hire a programs coordinator to do that work so I could focus on growth. As the Founder and visionary of S.Au.S., I have to admit I have many ideas but I have learned to contain myself in order to ensure we provide the top quality services for our participants. After 10 years of running a successful organization and helping hundreds of families; many people were unaware of my silent struggles. I decided to change that and open up by demystifying my life as a mom to a boy living with severe autism. In Summer 2018 I created my website www.a-mama-bear.com. Here, I found an outlet for my loneliness as a mom, activist and leader. It has helped heal my wounded heart at times. With every passing year, S.Au.S. has proven successful in reaching more people, providing more programs and building a solid autism community. Knowing I was able to provide programs where previously there were none made me feel good. It is what kept me going. “having a general support network can benefit parents, receiving parenting support specific to the child and his or her needs is of utmost importance in helping families”. (Banach, Judice, Conway & Couse 2010 p.72) “I thought that the government would have a place for autistic youth who are aging out of high school…” Even though there are obstacles I remain driven to move forward. We have successfully created a life for my son who is almost 16 years old and I refuse to give up on him now. My promise to my son remains that I will create a space for him in this world. Often times you will hear me refer to S.Au.S. as my third child because I pour so much love, time and energy into it. I have had to do a lot of soul searching and ask myself can I continue this work? Because I won’t give up on my son I refuse to give up on this work. I know the Quebec government hasn’t been there for my son in the past and I don’t trust that they will be there for him in the future. The experience and knowledge I have gained as leader of S.Au.S. makes it so that I consider myself an emerging teacher outside of the classroom. I look toward the future and know my work is far from done. We have been able to provide services for families who have children and teens on the autism spectrum but look to help the adult community next. In Quebec those who have level 3 autism have schooling until the age of 21 and thereafter there are no services. Parents are left to figure things out for themselves. Parents automatically go from being parent to becoming a caregiver, taking care of their adult child 24/7. It is a desperate situation. The government is nowhere close to a solution. This when I start to talk about my “legacy project”; which is to build a day center for adults with severe autism. This center will be a brand new state of the art facility for individuals to continue to learn, grow and thrive in a safe environment created specifically with their needs in mind. It will also help to keep family units together, allowing both parents to continue working with peace of mind knowing that their adult child has a life created outside of the home. In conclusion, my hope is that I have been able to impart a new perspective about Autism, and it is that of someone who is relatively new in the arena. I have no fear of failure because it is guaranteed I will in fact fail at times. I merely hope you will help me on this journey to expanding the services we offer to autism families. Editor’s Notes: This article is adapted from a paper presented by Audrey to the Action Research Network of the Americas Conference in Montréal, Québec, Canada. June 2019. Due to the COVID-19 health crisis, the annual S.Au.S. Run/Walk fundraiser scheduled for April 26 has been cancelled. This is an important fundraising event for the organization. For more information and make a donation to S.Au.S. on their bi-lingual website: s-au-s.org Related
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