About Me: Dyslexia and Education Advocate

About Me:

I am a parent, attorney and advocate in Nashville, Tennessee. I and my middle school daughter both have dyslexia. During the 2015 legislative session I was an advocate to help pass the much needed Dyslexia Legislation and was proud to participate in the 2016 Bill Signing. I was recently named as the Massey-Sexton Dyslexia Advocate of 2018 by the TNIDA. I now serve on the Decoding Dyslexia TN Leadership Team and serve on the TN Department of Education’s Dyslexia Advisory Council. I have been a presenter for the past two years at the Tennessee Association for Assistive Technology annual conferences. I also do frequent speaking engagements around Middle Tennessee on the topic of dyslexia and spend lots of time in one-on-one meetings with families negotiating dyslexia in public schools. My family’s dyslexia story has been featured in several articles, including Mindshift’s October 15, 2015 article “Why Recognizing Dyslexia at School Can be Difficult.”

Outside of my dyslexia work, I champion public schools. I served for two years as President of the PTO of Eakin Elementary School and now do Tours and Social Media work for the PTSO of my daughters’ beloved middle school, West End Middle. My favorite part of my work in public schools is mentoring students.  I have been mentoring a 6th grade boy since he was in 2nd grade and have advocated for him to get an individualized education plan for his dyslexia and other disabilities. I also have mentored a 5th grade girl since she was in 3rd grade and have followed her through the foster care system to several different schools to spend time reading with her each week. I dedicates time to these students each week and deeply enjoy the bond I have developed with both of these wonderful children.

In addition to my advocacy work, I am also is a contributor to The Mighty Site, where I have several stories published on topics including being a bereaved parent.

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To Learn more about my journey, please read the following excerpt from TN Trend magazine, Fall 2016 Issue:

“Meet the Advocate:  Anna Thorsen

Anna Thorsen is known as a champion for children, and a champion for public schools.  Last year, during the legislative session, she became a tireless advocate to help pass the much needed Dyslexia Legislation.  She was recently appointed to serve on the Dyslexia Council for the state of Tennessee by Education Commissioner Candice McQueen.

The Journey from Diagnosis to Advocacy

I began my work career as a Corporate Attorney at a big Nashville Law firm. Very soon after I began work, I began to really struggle.

I had grown up never being a good speller and being teased about it. In college and law school I was graded down for my poor spelling on the essays and exams I wrote. (I honestly do not know how I passed the Bar Exam.) Early on in my life, I developed a sharp wit and keen sense of humor to cover my shame, but it never went away.

As an attorney, I spent my days reading, writing and revising documents that were 50 or more pages long and legally binding. It was really hard. I got things wrong.  I mixed things up. It was not until the attorney in the office next to be gave me some tough-love that I realized that I have a learning disability.

I will never forget it. I was 27 years old and I been practicing for about 3 years. I was under a huge deadline on a big merger deal and I got stuck on the word “with.” I think I was spelling it “w-h-i-t-h-e”.  Spell check couldn’t recognize it and I was panicked under my looming deadline.  I ran to the next office over and in a rushed voice asked “how do you spell ‘with’”? She looked up at me and said “you do know your dyslexic, right?” I thought she was just being mean, but as I got home that night, I began thinking about it. The next day I called to get tested. Turns out, she was right, I had dyslexia.

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. (Today, we still love our school and Clara is thriving with fantastic services and accommodations under an Individualized Education Plan).

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, the new Say Dyslexia law is passed and I am proud to keep working to fight for all kids to learn to read. The stakes simply could not be higher for our society.

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 love you. I believe in you. I see you.  You are not invisible to me.”

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, 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.

What Public Schools are Doing Right

Our school are doing so much right. Our tireless teachers. Our dedicated principals. Our PTOs, parents and community members who are engaging for our children. I am awed at their charge and all that they are able to every single day to serve our diverse children with so few resources.

But if I had to pick the biggest thing our schools do right, I would use the words of my daughters middle school, West End Middle Prep.  “Better Together.” It sounds too simple, but I think that is the heart of what I believe schools do right. Our public schools bring us together.

In our daily lives, we are separate. We stay insulated with our own kind, in our comfort zone. Our thinking cannot help but become one-sided. Diverse public schools break us from that and open our eyes to the beauty, the power and the challenges of our society, all in one small microcosm.

My daughters’ elementary school is the 6th most diverse elementary school in Tennessee. It has children from 40 countries, it speaks 17 languages, has 40% of its students from high poverty neighborhoods, has 120 gifted students, and it hosts all the deaf elementary students in Metro Nashville.  At this school, we are all so different, but we have a vibrant community. We work together. We learn together. We improve the lives of all our children – together. I get so emotional about this, but being part of a community like this gives me hope for the future.

We need to highlight the power of the diversity. We need to highlight the power of community.  We need to highlight that our neighborhood schools – the one right down the street from all of us, is the place that WE ALL can invest and volunteer and engage in to make our neighborhoods better.

What Public Schools Can Do Better

For me, that is a simple answer. We need to invest in our schools and our children as if our future depends on it. Not just we, the parents.  Not just we, the school district. I am talking about the big “we.” Our society. Our leaders. Our whole culture. And by “invest” I don’t mean just with money.  Yes, we need that. Lots and lots of that. But we need to invest ourselves. Our time. Our talents. Us.  Everyday Americans.

We are excellent as a nation, of criticizing the public education. We are excellent at picking schools apart data point by data point. We are excellent at measuring the success of “those kids” versus “those other kids.” We are excellent at talking out of both sides of our faces, at one time saying our schools are terrible while at the same time saying we are upset at the racial divide, the growing prison population, mental health, and economic strife. It drives me crazy.

Its like a gardener planting seeds a pot of rocks and then criticizing the rocks for the failure of the seeds to thrive. Then performing detailed analysis over and over and over again of which seed is doing better in the rocky soil and spending money and time reorganizing the seeds and thentransplanting them to other pots of rocky soil. It seems absurd, and it is. What do those seeds need to thrive? Nice rich soil. If you don’t invest in that one, simply thing, no plant ever stands a chance.

But somehow, we, as a nation, can’t think that realistically. We somehow are so entrenched in the political machine that we have forgotten how to use our brains and see that we have the power to fix many of our problems. How? Investing in our public schools and our children. Lets pay teachers a living wage. Lets give principals workable budgets, staff and schedules to empower them to do all the things they are tasked with doing. Lets invest in school buildings for the next generation. Lets give schools resources, teaching and support staff to teach and serve all kinds of children to truly differentiate so that ALL learners can get an excellent education tailored for them in their neighborhood. Lets feed kids healthy food.  Lets give kids exercise. Lets teach kids music and art and languages. Lets make neighborhood public schools hubs of our community where all families can access services and build communities together. Lets value parents as partners, engage them and care for them.

Yes, perhaps I am an idealist. But even if we can’t, as a nation, get our head around the simple fact that our schools need money and funding, then we, neighbors, can make changes in our own schools. Each of us, every single one of us, have power to make change for public education. There is a school in your neighborhood. Find it. Reach out to that school and find out how to do your small part. Go read to a child. Bring the teachers bagels or Target gift cards or just a card that says “thank you.”  Pull weeds on the play ground. Buy some books for the library. Anything.

Facilitating a Collaborative Spirit

By far the hardest part of the journey of being a parent of a child with a special need is collaborating with schools when negotiating accommodations for a child. As a parent advocate, you have to be fierce and tireless.  You have to be deeply educated in your child’s disability and your rights under the Federal, State and District laws and regulations.  Many parents of children with special needs say they feel so much stress because they are their child’s mom, IEP case manager, tutor, advocate and lawyer, all wrapped into one piled on top of all of the other demands of work and family life. It is overwhelming and many parents don’t have the luxury of time at the end of a busy work week to dedicate themselves to being the all-around expert on their child’s education.  After years of playing all these roles, parents get worn out and really must struggle to work to build collaborative relationships with schools.

To make matter worse, oftentimes, schools don’t see the human side of these parents. They don’t look deeply at parents to see that, ultimately, they are stressed out, alone and exhausted. Especially by the time middle and high schools come around, schools don’t realize that some parents have been having this same fight, making these same arguments for 10+ years. It can really lead to strained relationships.

Building a collaborative relationship takes a lot of work, and it is not easy. At all. I certainly do not always do a good job at it myself. Especially when I am tired, angry and stressed out as a mom. But, what I always tell parents is that you are stuck, for better or for worse, working with your school, your teachers and your school administration for a year or years.  You need them to not write you off as a crazy parent.

Next Steps

I have asked the Dyslexia Advisory Council to create an email account for some other means to seek input from teachers and parents. We must hear from across our counties to know if our law is having the needed affect for our struggling children.

What I hope that Tennesseans will soon come to see is that Dyslexia is an issue that matters to all Americans.  Its the leading reason why 1 in 5 of Americans cannot read. The National Institute of Health (NIH) has declared the lack of ability to read as a public health issue. According to Dr. Reid Lyon of the NIH, poor readers are more likely to be on welfare, be teen mothers, be in our prisons and have mental health problems.  A 2006 study found that students with dyslexia are 3 times more likely to attempt suicide. A study in Texas prisons found that 80% of prisoners have dyslexia.

Personally, I would love to see the Council focus on educating our public about what dyslexia is and what the signs are. Many people think that reversing letters is the most common sign of dyslexia. Its not. Many students  have severe dyslexia but never reverse letters.  Some students have a mild case while other students are profoundly affected. Many students even have above average IQs but still struggle significantly are known as twice exceptional, or “2E.”

The United States Senate recently estimated that it significantly impacts over 8.5 million children across our country, yet most schools, teachers and parents do not even realize the signs. There is a fantastic quote that I love: “Dyslexia. It would be difficult, if not impossible, to find any other disability affecting so many millions of children in the United States today, on which so much research has been done, so many thousands of articles written and yet which so very little information concerning has reached the average teacher or physician to say nothing of parents and the public. These children are as handicapped by the ignorance surrounding their problem as they are by the problem itself. The shocking part to me is that it was written in 1963. Over 50 years ago and so little has changed.

I am so proud that Tennessee has joined the growing list of states tackling dyslexia. Our new Say Dyslexia Law requires schools to screen all students for dyslexia and to provide students with characteristics of dyslexia to get much-needed Structured Literacy interventions within the general education setting through the Tiers of RTI. I am proud of this investment in our children and look forward to working with the state of Tennessee to keep improving our schools so that all students can learn to read!

# SayDyslexia

5 Tips for Parents Negotiating IEPs

  1. Don’t be One Dimensional.  If you are that parent that always and only talks about one topic, teachers and administrators will begin to avoid you.  They will see you coming and know that you are going to harass them about something they did wrong with your child again.  If communication ends – it is terrible for your child.  You must, at all costs, keep communication flowing.  I advise parents to do this is by only talking about a child’s issues periodically in causal encounters.  For example, if you run into the teacher in the hall – DO NOT accost her with “I saw my child’s grade on math – did you give her the accommodation she needs?” No.  Instead, say hello to the teacher, tell a funny story unrelated to your child, ask about how she felt about a recent field trip – anything – to show that you are not one dimensional.
  2. Make yourself Invaluable.  Show that you are a team player for your school.  Show up as a chaperone.  Offer to mentor another child. Volunteer for the school dance.  Anything to show teachers and administration that you are dedicated to the school and want to be a part of the team. If they see you donating your time, they will be more willing to help you.
  3. Show your soft side. Don’t be a bull in a china shop.  Try to connect with teachers and administrators on an emotional level. They are humans, too. Many of them have kids. Many of them have been through very hard things in life. Use emotion words like “I am scared for my child” or “I have been losing sleep worrying.” Those are things people can connect with on a human level. It makes people want to help you more than when you walk in demanding certain things be done.
  4. Bring conversations back to your child. Remind people in meetings that you are talking about a real, live child, and not a data point. Bring a picture of your child. Bring a video of your child. Ask for your child to come by the meeting to tell the school group things are are going well and things that are hard. Tell school about your child’s dreams and abilities outside of school. Once the team connects with you and your child, you will be more successful. We, as humans, help people we know and have a harder time denying someone what we have a connection to.
  5.  When all else fails, don’t be afraid to be a bull in a china shop. If nothing above works, you have to be willing to take it to the next level until you get what your child needs. There are just some schools, very few, that only respond when forced.  It is a shame, but it is true. It is a very hard position to be in, but I always advise to first try to assume the school will do the right thing, and only elevate it when you have no other options.”