The idea for this research study came about because of my experience as a mom to two amazing boys who are deafblind. This article is based upon my dissertation. I included the following vignette in my dissertation and I wanted to re-share it to give some context behind “my why”. Still when I read this, it makes me emotional. I know I am not alone and that many other families feel emotional when thinking back to any struggles in advocating for their child’s needs.
Citation for Dissertation:
McKittrick, L. L. (2022). Parents of children who are deafblind face challenges in fostering collaboration within individualized education program teams. British Journal of Visual Impairment, 0(0). https://doi.org/10.1177/02646196221127103
Today, we are having a special Individualized Education Program meeting for my 10-year-old son. At home, I have seen him struggle this year, and I do not know why. I am upset because I do not have all the answers. Are his struggles because he is missing some of the information at school due to his dual sensory loss? Is it that he needs extra support in academics or perhaps that we are missing that he has other needs that are not related to deafblindness? I have been up all night trying to figure out how to get the IEP team to understand what is going on. The morning of the IEP meeting, I decided to bring my son to the meeting so that he can share how he is feeling. On the car ride, I explain to him that I am here to support him but that I need him to be honest with his team about what is going on in the classroom and at home.
I walk into the district office. I had hoped to have this meeting at our house so that it would be on “our turf,” but it wouldn’t work with schedules. I feel less comfortable in this environment because it feels impersonal. We continue into the stark conference room where the entire team is already seated. Have they had a pre-meeting without us? I feel the inequality of power.
The reason for this meeting is that I have asked the IEP team for a tutor to be added to his team - to pre-teach vocabulary and re-teach concepts that he may have missed due to his combined hearing and vision loss. I figured this was easier than asking for a Teacher of the Deaf to be added to his team. I was wrong.
His case manager informs me that he does not qualify for these services because he is making sufficient academic progress. Although I am not surprised by her response, I am hurt. Even though he has a supportive IEP team, they are not advocating for him. It's up to me now. My stomach is upset. I feel anxious. My son is watching my next move. I take a deep breath to calm myself. I am careful with my next words and actions.
I make a choice to advocate for my son by clearly and calmly explaining his need for a teacher of the deaf (TOD). The team looks shocked that I have been so brave to ask for this. The case manager addresses the rest of the team and asks their opinion. Everyone is silent. I look over at our district audiologist with a pleading look. He bravely tells the case manager that he agrees with me and that there is research to support what I am asking for. I am forever grateful to him for advocating for my son at that moment.
The case manager looks at my son, and says to him, "Don't worry. I do not yet have the knowledge about deafblindness and Usher syndrome to help you. I need to get some more information and background so that I can make things better for you. I promise I will do everything to help you. I am sorry that you have been struggling and that we do not currently have what you need."
The next day they received approval for the district to hire an itinerant TOD to work with my son. The case manager called to thank me for advocating for my sons needs and for helping her to better understand how to help him. She also acknowledged his bravery at being there to advocate for his needs.
When I wrote this, I was a parent of two children, ages 19 and 10, who are deafblind. The vignette I shared was of a recent Individualized Education Program (IEP) meeting for our youngest son. I used to believe there would be no conflict if the team worked well together. But, meetings can easily turn emotional, especially if a family sees their child struggling. Thankfully, the meeting I described ended well, and my son is now doing well, but that meeting was stressful. If I would have let it turn emotional, it may not have ended with the same positive result. I have been fortunate over the years to get my son’s needs met with IEP teams. Instead of looking for educators to create a positive, collaborative environment in IEP meetings, I assume mutual responsibility to ensure meetings are collaborative and that my son’s needs get met.
I have had mostly positive IEP meetings over the years, but there were many times when IEP teams did not understand my children’s needs, and it was up to me to advocate. I had to fight for what my kids needed, which usually involved educating the teams about deafblindness and the unique needs associated with this low-incidence disability. I gained knowledge about deafblindness by doing internet and other research and would share that knowledge with IEP team members because often I was the only one on the team with knowledge about deafblindness. I discovered advocacy strategies by talking with other parents who had similar experiences. Most of the time, the IEP process felt rushed and impersonal. However, I learned that a negative attitude or conflict approach did not get me anywhere. If I showed frustration and anger at a meeting, it usually made things worse.
I learned that I could better advocate for my children's needs by employing positive strategies to improve collaboration. I learned how to compose myself in meetings. I would always be prepared with research to support my position. I would bring my sons with me to meetings and have them tell the team directly how their year was going. I would take steps to ensure that the meeting was meaningful to me. I always tried to be considerate of the team and to understand their viewpoints. I always checked in with everyone before the meeting to thank them and to see if there was anything we needed to discuss.
Because of my personal experiences, I became interested in finding ways to improve collaboration in IEP meetings. I found that past research was focused on either the conflict and family dissatisfaction itself or on strategies that educators can employ to improve collaboration. I found no studies that documented family-initiated strategies used to improve collaboration and to get their children’s needs met. This study documents family-initiated strategies that lead to increased IEP team collaboration in hopes that these findings will lead to a more collaborative IEP team environment. To do this, it is necessary to first understand the challenges that parents face in IEP meetings. This most recent journal article published in the British Journal of Visual Impairments does just that.
This journal article outlines findings from interviews with fourteen moms of children who are deafblind. These moms shared their advocacy stories with me. I want to thank all the families who have supported my research and helped me develop new advocacy strategies that have helped my own children.
The research question was: What experiences lead parents of children who are deafblind to develop and use collaborative skills with their child’s IEP teams?
Read a summary of Lane's Findings
Read the Journal Article
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.