As I struggled on my journey to help my children who are deafblind get the education they deserved, I finally realized that teaching them to advocate for themselves not only resulted in success at school, but in life as well.
As a mom to four boys, two who are deafblind, I have struggled over the years to advocate for my children’s needs with IEP teams. It was the main reason I went back to graduate school to focus on deafblindness, and family-school partnership specifically.
As part of my graduate studies, I was asked to write a paper on a topic of my choosing - as a culmination of what I had learned. During my studies, I had focused on deafblind specific research on family-school partnerships as well as self-determination and student led IEP’s. I knew all of these areas were important to me, and other families, but I hadn’t figured out how to piece all of these areas of interest together - more simply I wondered why these topics mattered so much to me. This is why I wrote the paper that I am sharing with you.
At the time I wrote this paper, I was struggling to get my son's needs met at school. He was having a hard time at school and needed more support but I was at a loss on how to help him. Everything I tried, failed, probably because I was trying to go at it alone.
His eyesight was still decent at that time, and if you saw him, you wouldn't have known he had a vision loss, but the vision loss, combined with the hearing loss, was causing him to miss out on a lot in the general education classroom. This was part of the problem, honestly, because his teachers would often not accommodate him, because he seemed to be engaged in class and never complained. But, he wasn’t complaining because he was afraid to. He couldn’t keep up and was getting farther and farther behind. I also suspected that he had other challenges in addition to the deafblindness and I was trying to get him assessed to find out more. Through all of this, I felt alone and unsupported by the IEP team. My heart was breaking because I knew our son needed help and I hated to see him so frustrated and hating school.
I persisted, however, because I knew that my mother's instinct wasn’t wrong. I knew deep down that the IEP team wanted the best for my son but they just didn’t understand his individual needs and I was the only one on the team with knowledge of deafblindness.
I was simply exhausted. As I stated in my previous blog, it was just easier for me to make all decisions for our children, instead of supporting them in making their decisions. I would go to IEP meetings alone, without my kids, and try to explain their needs. I know now that this wasn’t really easier but it was my coping mechanism. This approach seemed to take up less of my energy.
Then I came across the research on self-determination, one of the areas of the Expanded Core Curriculum. This led me to be interested in how students could be more involved in their educational planning.
I conducted a review of the research in these areas and decided to try a new advocacy approach for our family. Instead of continuing to place all the advocacy burden on myself alone, I decided to focus on promoting self-determination in my kids and to teach them to advocate for themselves. Instead of me advocating for them, I wanted to advocate aside them - to help our boys be strong self-advocates.
It has taken a long time for us to get there but we have succeeded - Conner and Dalton are more involved now and making their own choices, with our support and the support of IEP teams and others.
I wrote this paper, which is both a review of the literature on these topics, and a way to tie it all together, to help me, as a parent, process all of this, so that I could help my own children. But, as I went through my files I realized that sharing it might also help others. So, I hope it helps you in some way feel less alone in your advocacy. I hope it helps acknowledge that working toward self-determination and self-advocacy goals, and helping children be more involved in decision making, is worth the investment.
My journey will look different than your journey. The road towards self-advocacy is different for everyone. But the best thing I learned through all of this is to be open to looking at a situation in a different light to see if there is another way.
Read the full paper.
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Lanya (Lane) McKittrick is the Chair of the Board of the Usher Syndrome Coalition, founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness.