I am sharing my story as a mother and professional researcher of two sons who have Usher Syndrome and are deafblind.
When we first found out that our son, Conner, had Usher syndrome, we were devastated. Conner was born deaf and received a cochlear implant at the age of one. Conner was getting ready to attend a mainstream kindergarten class with his hearing peers when we found out that he had Usher syndrome. I still remember that day vividly, over 20 years later - the intense grief my husband and I felt.
Shortly after Conner’s diagnosis in 2004, my husband and I started the Hear See Hope Foundation to raise money for a cure. Our hope was to turn all of our confusing emotions into something positive. We gained great hope that we could make a difference and that there would be a cure for Usher syndrome in our children’s lifetime. We discovered many helpful and knowledgeable researchers who are doing all they can to find a cure for Usher syndrome. We found a supportive community of families who are also impacted by Usher syndrome.
With the birth of our fourth and youngest son Dalton in April of 2008, we became more devoted to finding a cure but also to building awareness, because Dalton was also born with Usher syndrome. Today, all four of our boys are actively involved in the Usher syndrome community.
I am involved in the Deafblind community in many ways - as Chair of the Board of Directors of the Usher Syndrome Coalition, through continued efforts to find a cure through Hear See Hope, as a member of the National Family Association for Deaf-Blindness, as part of the Council for Exceptional Children (CEC) DVIDB (Division on Visual Impairments and Deafblindness), as a special education researcher focused on deafblindness, and through participation in various service opportunities in the field.
Starting when Conner and Dalton were young, my husband and I had to advocate for their needs at school. Usher syndrome is often misunderstood and it was frustrating for all of us. Conner moved schools several times, in the search for a positive experience for him so he could meet his full potential. I was tired, confused, and frustrated. I constantly felt like I was alone - that no one understood what our kids needed and that my voice was not being heard. Dalton’s experience has been similar to Conner’s. He’s moved schools several times and his needs are often misunderstood as well.
It was for this reason that I decided to take a risk and change careers. I knew it was my purpose to learn all I could about special education and deafblindness so I could help my kids, and others. I applied to the University of Northern Colorado’s doctoral program in special education and was accepted.
A few years later I earned my doctorate at University of Northern Colorado. My dissertation, “Strategies that Parents of Children who are Deafblind Employ to Foster Collaboration within IEP Teams,” earned UNC’s 2019 Graduate School Outstanding Dissertation Award.
I am actively involved in the deafblind community in various ways: as Chair of the Board of the Usher Syndrome Coalition, as founder of the Hear See Hope Foundation, as a special education researcher, and through other service opportunities in the field.
My desire is to help improve outcomes for children who are deafblind; to give back to the deafblind community.
My special education expertise is on finding ways for families and schools to collaborate to meet the needs of children who are deafblind. All IEP team members need to share knowledge, work together, and acknowledge what each team member brings to the table.
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.