As I continue to push my city and my state on reading reform for students with dyslexia, the voices attacking me will get louder. They will mock me. Threaten to shoot me (like Richard Allington did). They will accuse me of being a puppet or convert agent for the rich and private companies. That is okay. I will just keep doing my work. If you want to know my story, it is below.
I am a parent with dyslexia. All the work I do, I do for free. I don’t work for anyone. I never get paid. (But sometimes a parent I speak with buys me a coffee or a muffin. ☕️) I have no affilations to any billionaires or curriculum companies.
I volunteer for @DDTN13 to help parents who are struggling to navigate dyslexia like I did.
I volunteer on the @TNedu Dyslexia Advisory Council to represent parents.
I volunteer with my sweet public school because community and public ed matter deeply to me.
I mentor a boy I have known for years who struggles with trauma and disabilities.
I volunteer with @EERocks_MNPS to be in IEP meetings with homeless youth and children in foster care.
I write stories about grieving the death a child for @TheMightySite. https://themighty.com/2016/12/coping-with-grief-after-death/
My past work and background? Any shady connections there?
After attending Vanderbilt law school I went to work at a big law firm in Nashville. I worked for four years and I was really struggling. When I was 29, I finally was diagnosed with having dyslexia which explained so much about my failings in writing and reading lengthy mergers and acquisitions contracts. Once I was diagnosed, I quickly realized that I had picked a terrible profession for my skill set. I knew that I needed to get out of the law. When I got pregnant with my first daughter, I thought it was my ticket to exit gracefully. I was so excited for my life as a new mom. Then, tragedy struck when my first born, Madeline, died. I quit work and took time to grieve. I was also having significant medical issues at the time and knew that if I wanted to get pregnant, my window was short. Seventeen months later, Ava was born – typical and healthy. My life took another devastating turn another 16 months later when Clara was born. Right after birth, she crashed hard and was in the hospital for 3 months fighting for her life. It was absolute hell. Turned out, she shares a rare medical conditions with her oldest sister. B6 Dependent Epilepsy.
My life had suffered several huge blows and I was left unmoored in my own life for a couple of years. I suffered so much grief and was stricken with Post Traumatic Stress Syndrome from Madeline’s death and all the times in the hospital when Clara would code and have to be resuscitated and times she would have seizures and we would race her to the hospital in the back of an ambulance.
Life was stressful for those years. I had two toddlers at home, one of whom was very medically fragile and prone to seizures. What helped me the most was connecting with other moms who had suffered like me. In those dark days of my life, I came painfully and vividly aware of what it means to be a mother and how hard it is. The loss. The pain. The heartbreak. I knew I needed help and I need connection to other women who had been through what I had been through.
When I was emotionally able, when Clara was about 2 years old, I began to dip my toe into advocacy. I was invited to be on the Family Advisory Council at Vanderbilt Children’s Hospital. We helped change policies to make the hospital to improve families’ experiences. It was hard working in the place that held so many of my PTSD triggers, but I did it somehow. Once my 3-year term there ended, I searched for a new cause to take up.
A natural fit for me seemed to be the Epilepsy Foundation of Middle Tennessee. I worked there for a year as an Education Coordinator getting out into the community talking to schools, students and organizations about Epilepsy. I really enjoyed the work, but for several reasons, I knew I needed to move on. By this point, both my girls had started Elementary School and I naturally was drawn to that community. I gave up my work at the Epilepsy Foundation and jumped all-in to our school PTO. I served there as Fundraiser and eventually PTO-President for two years. I loved supporting teachers and students and building community to help get families engaged in our schools.
During my time serving our school as PTO president, Clara was diagnosed with dyslexia. Although I love our school dearly, our journey to get the school and the district to recognize her diagnosis was not an easy one. In fact, it was contentious and hard. Eventually, with a lot of advocacy, a lot of emails to legislators and one fated phone call to the Office of Special Education Programs in Washington, D.C., Clara got what she needed.
Through that process, I began to learn just how many students suffer from dyslexia and just how prevalent it is. I knew personally the shame of growing up undiagnosed. I began to spend most of my time advocating and connecting with parents to get the message out. Through an effort of many, things have improved for students with dyslexia in Tennessee. The stakes simply could not be higher for our society and there is still so much work to do so that all children can be taught to read by a method of how brains learn (known as the Science of Reading.)
My favorite part of advocacy is sitting and listening to stories. I love giving people hope one on one. I love connecting with other mothers who are in pain and telling them “I have been there. I hear you. You are not invisible to me.” I love connecting with kids who are having a hard time and telling them “I believe in you. I see you.”
I guess, looking back on it, I learned all the tools I need to be an effective advocate from my daughters, living and dead. The greatest gift that my daughter, Madeline, taught me when she died is that by sharing your story, you can heal yourself and help others who are hurting too. We are often so alone in grief and fear, we cannot pull ourselves out. We feel invisible and powerless. I learned that there is a beauty and a power to sharing your pain and connecting on a human level with others. I learned that we simply cannot make the journey of life alone. At times, we need others to be our voice to help us. And, in our turn, we need to be the voice for others. We need to look deeply at those around us who are struggling and tell them: “You are not invisible to me.”
My Clara taught me how to advocate under fire. Her medical situation was so precarious that I sat a bedside vigil for 3 horrific months. I was constantly on high alert. I was advocating for her 24 hours a day. If I had not been there – she would have been dead 100 times over. In those dark days and hours, I learned that advocating can, quite literally, save a life. Today Clara is fierce. Artistic. She teaches me the power of hope and how to keep going against the odds. She has aT Shirt she wears that says “Not fragile like a flower. Fragile like a bomb.” Power in fragility. Yes.
My Ava has taught me how to humbly show my vast skills while also finding my power through introspection. Ava had a mother who was terrified, trauma filled and viligent waiting for the next horrible thing to happen. She was left with grandparents at 17 months old while I lived in the hospital with Clara. She learned to care for herself. I deeply regret I could not be there for her more. I still apologize. Ava is highly gifted and creative but thoughtful. A deep ocean who I admire greatly and try to emulate.
The last two years have mostly been about my husband and I coming to terms with the huge traumas in our married life and in our childhoods. We have done EMDR Therapy for our PTSD. We are working through childhood trauma and attachment issues. In that time we have also dealt with the death of a parent and I have had 16 surgeries. We are healing in so many ways.
Today, it is my honor and my privilege to spend my days advocating. I don’t charge a dime. I do it because I can. I do it because I have one daughter who never had a voice. I do it because all those mothers are not invisible to me. I do it because I have been there. I have a voice and I have learned, through strife, how to use it to help others. I am proud to do so.
That to say that what I do & say on social media and in my advocacy is just me trying to do what I think is best. I try to educate myself on issues as much as I can. I am imperfect but trying. I still have a lot to learn.
I have no billionaires. No secret backing. I have no plotting secret agenda. It is just me. Working hard because my life has taught me that parents hurt and need to be seen.
What else do I do outside of what you see of me on social media?
– I garden.
– I read.
– I have a crap ton of surgeries.
– I work to heal my brokeness from childhood sexual trauma, death of a child and medical complexities.
Brene Brown says we each have a story that can bring others to their knees. It’s true. Our stories have the power to connect us- to help us heal our own pain.
I know much of this work is me battling my demons to prove I am worthy of love, but that is me and it is ok. We all do what we can to try to heal.
So. Listen to me if you will. It is just me. Thank you. 🌱
(I was grateful to get the opportunity to share my story in the @ProEdTN publication TRENDS in 2016. view.joomag.com/mag/0225219001… .You can also find my story here: https://dyslexia-untied.com/anna-thorsen-dyslexia-and-educ…/)