As a mother of a child with a rare disorder, I know first hand how challenging life can be. Endless doctors appointments, constantly feeling judged and the need to explain why my son is not meeting his milestones. Don’t we have enough to deal with? Of course not. Now we have to prove that our children deserve the right to an inclusive education that is full of positive experiences. An education where teachers help my child be the best he can be.
Since receiving Dante`s diagnosis of Prader-Willi Syndrome, my life has definitely changed! My journey started with a dreaded diagnosis that put me into a deep depression for months. Doctors told us that our son was always going to be hungry, that he would never have children and he would struggle in school with cognitive and behavioral challenges. After much reflection and many tears shed, I decided to take action. I was an elementary school teacher at the time with high hopes and expectations. I made a choice to believe that we could change Dante’s future. Since making that choice almost 10 years ago, we have raised over 3 million dollars for PWS research, founded FPWR Canada (www.fpwr.ca) and inspired a community of fighters all over the world. Dante also inspired me to follow a new direction in education and for the past 5 years, I have been a special education resource teacher. I teach and program for students with various abilities including Autism and Developmental Disabilities. Writing IEP’s, interacting with families of rare disorders and helping students reach their maximum potential has become my new passion. As a teacher, I understand how difficult it can be to manage 30 students in a class, especially those that have special needs and require extra attention and individualized programming.
As a mother and a teacher, I have a much clearer understanding of the importance of educational advocacy as my son moves through an inclusive public school system that is filled with challenges and lack of understanding. But I also see it as a huge opportunity to change the way a school community views people with special needs and rare disorders. I am committed to turning parents and school communities into IEP Champions.
I was honored to lead a deep dive session at the Global Genes Patient Summit where I discovered that all rare disorders are experiencing the same challenges within the school system. Empowering parents to advocate for their child and educating school teams to better understand rare disorders is crucial. I was inspired by the Global Genes community to get more involved and to eliminate the challenges of rare disorders, through educational advocacy.
This series will empower parents to advocate for their children through the school system, setting them up for continued success in their education. They will learn to understand the language of an IEP, set effective goals, track progress and work with their school team effectively and positively.
Tanya Johnson is a mother, special education resource teacher, advocate and Founder of IEP Champion and Co-Founder of FPWR Canada. You can contact Tanya at firstname.lastname@example.org. Collaborate and share your stories on her facebook group: Education and Advocacy – Maximize Learning Potential: (https://www.facebook.com/groups/459882400757033/) and learn more about her work at IEP Champion here: (https://www.facebook.com/IEPChampion)