BRAVE Speech & Language Services
Andrea
Andrea
Parent of Adult on the Autism Spectrum
From Fear to Freedom: A Mother’s Journey Through Autism, Advocacy, and Unbreakable Bond.
—A BRAVE Parent’s Story
My daughter was diagnosed with autism at the age of 20 months. I was terrified for her future, and for our family’s. Her diagnosis was devastating. Could I handle this? Could she? Her younger brother was only four months old at the time; how were we, as a family, going to manage?
After getting over the shock, I began frantically researching therapies that could help her. ABA, or IBI, was the only therapy that the province would fund, and there was a massive waitlist.
As I dug deeper into my research, I came across play based therapies. I became convinced that a play and relationship-based therapy was best for my daughter. I wanted her to have as normal a childhood as possible while also learning to communicate, build social relationships, and most importantly, be happy.
Although I had determined that a play and relationship therapy was what we needed, there was nothing readily available in Toronto, in 2006. Then I came across a DIRFloortime® therapy study through the MEHRI Institute at York University. Over the following two years, we attended weekly sessions, with Narmilee being one of our SLPs. I was trained in the therapy and passed on what I knew to other people in my daughter’s life. We strove to do 40 hours/week of Floortime in the home to augment what we received through the study. Although this seemed very daunting, I felt this was the best therapy available.
My daughter didn’t attend school full time until the end of grade 4 because we were trying to fit as many therapy hours into her schedule as possible. That said, we also wanted her in school, with neurotypical peers. So over time we increased the time she spent at school. School was a major challenge. We were lucky that my daughter had a wonderful principal and great teachers who were willing to adapt to the type of therapy we were doing.
However, a less than accommodating teacher in grade 6 forced us to look at independent schools. We found a great match who was willing to work with us. She stayed at this school until Grade 12. I was involved with these schools as much as they would allow me to be. The relationships I built there helped my daughter get what she needed. I also had to listen to my daughter and respect her own wishes.
In high school I thought she might be better served at our local high school where she could meet more people her age who lived in our area. Although she was lonely at the school she was attending, she did not want to leave so I supported that decision.
My connection with my daughter has been forged through our emotional bonding borne from her early years of therapy. Connecting with her “in her world” through Floortime earned, I think, her trust. We spent countless hours constructively building our bond. I can usually tell what she’s feeling and have been able to help her identify the feeling and how to overcome it if, indeed, it needs to be overcome. More importantly, I have learned to recognize my own feelings and how they impact her.
I long feared my child’s future. As she neared the end of high school, those early feelings of “what will happen to her?” came flooding back. She had done well academically in high school—but with lots of help. Would she be able to handle College or University? I had no idea.
Hannah was accepted into a local college, and I hoped for the best. I wondered if she was prepared enough. I need not have worried. All those years of therapy and support-formal and otherwise-had prepared her. She thrived in college. She made real friends for the first time. And she did well academically. After she completed her two-year college diploma in ECE, she applied to University. Again, I feared. But again, I should not have. Her two-year diploma counted as the first two years of her university degree, so she was entering into 3rd year university. She made the Dean’s List and–more importantly to me—made more friends.
I have always worked at moving my daughter forward one step at a time. My long term, overriding goal was independence. Now, that little girl, whom I was told would never speak, never tie her shoes and never live independently, will enter 4th year University in the fall.
Hannah loves taking long road trips with her friends, and helps out neighbours by driving their children to sports activities. She is kind, empathetic, funny and immensely independent.
When my daughter was four, I met a 12-year old girl with autism who, through a similar therapy journey as ours, was excelling. It made me realize what was possible.
Although all children are different, I knew this was possible for my daughter, too. And it was the possibilities that kept me going when I didn’t think I could. The one thing I know for certain, my daughter would not be where she is today without the therapy and therapists along the way.
I know how scary a diagnosis of autism can be. I know the sleepless nights of wondering if my child will be ok. I know the exhaustion of advocating for my child. I also know that potential is limitless. If I could have known how much my child would be thriving at 20 years of age, I would have been less scared, had fewer sleepless nights, and found more ways to overcome the exhaustion.
Hannah is worth all of it. Through my story, I hope I can give some hope to the BRAVE community of families who feel like they have none.