AGAINST ALL ODDS - Blending Research and Disability Parenting

It is my pleasure to host this guest post today from Queen's University doctoral candidate, Lorraine Hutton. I was amazed by Lorraine's story of perseverance and her research question about how we as parents of adult children with disabilities use social media for support. This is an international study, so all are welcome! Thank you, Lorraine, and good luck with your fascinating project! - Donna

Like all parent-caregivers, I never imagined that my life journey would entail the long-term provision of care to a disabled child.

I grew up in New Zealand and at 21 years of age, I married an American. Our second child was born after a lengthy labor and although I felt my son seemed to be developmentally “challenged”, Doctors insisted he was “normal”. With (possibly) a mother’s intuition, I worked through the initial grief process alone ---without a diagnosis. Making sense of an entirely different medical and educational system was difficult and my New Zealand family so far away. We lived in a small California town in USA and finding a suitable school placement for my son when he was about to turn five was nigh impossible. School evaluations were unpleasant, and one professional’s comment cruelly retorted that; “he sweats!”. I decided to home school my son and his three siblings. My main goal was to teach him to read because I felt that if nothing else, he could entertain himself with books and he would be able to read important labels and signs. He is now 28 years of age and reads very well, however, math is an alien concept.

I divorced in 2008, returned to school and went through some tough times with unsympathetic professors and young classmates, not to mention, the difficulty of taking my son to school with me. He would sit outside my lecture hall and I would check on him frequently. So many times, I longed for someone to understand my struggle---my mental and financial stress.

In 2016 I completed a master’s degree in Adult Education at Portland State University (Oregon, USA) and in 2017, I transferred to Queens University at Kingston, Ontario, Canada. Having endured the experience of lonely caregiving, I felt compelled to try to understand how long-term caregivers like myself, find “support” in their day to day challenges. Many caregivers I speak with have shared their experience and it is identical to mine. They feel misunderstood, rejected, blamed and alone. While there are limited programs and activities being created for disabled persons, there are virtually no “support” services for the parents who provide long-term, day to day care to disabled adults. With few options, some parents are turning to the internet---specifically Facebook to find understanding and information, but my question is, “do they really find meaningful connections there? What kind of value do caregivers visiting Facebook (FB) get from their participation in FB groups? Who uses FB, and why do caregivers not use FB for social and supportive connections? My PhD in Health Geography with an emphasis on caregivers has become the thing that consumes most of my thoughts and actions. If what I learn in this endeavour sheds light on new ways to provide support that encourages resilience in caregivers, I will feel that I have achieved a small measure of success ---finally.

Lorraine invites caregiving parents of intellectually disabled adults (over the age of 18 years) to participate in a short, anonymous online SURVEY. Please click the following link and please accept her thanks in advance.

https://queensu.qualtrics.com/jfe/form/SV_6o1iMDAhLuLRSdf