About Lanya McKittrick, PhD

When I first found out that our son, Conner, had Usher syndrome - a leading cause of genetic deafblindness - I was devastated. Conner was born deaf and received a cochlear implant at age one. Conner was preparing 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 I felt. 

 

Shortly after Conner’s diagnosis in 2004, my then 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 believed that we could make a difference in finding a cure for Usher syndrome in our children’s lifetime. We discovered many helpful and knowledgeable researchers who, to this day, are doing all they can to find a cure for Usher syndrome. Along the way, 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, too, was born with Usher syndrome. Today, all four of our boys are involved in the Usher syndrome community. 

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I am involved in the Deafblind community in many ways: as Chair of the Board of Directors of the Usher Syndrome Coalition, as an affiliate 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 founder of Lane of Inquiry - Deafblind Education Research and Family Support, and as a special education researcher focused on deafblindness, and through participation in various service opportunities in the field. 

 

When Conner and Dalton were young, I learned to advocate for their needs at school. Usher syndrome is rare and often misunderstood - it was frustrating for all of us. Conner moved schools several times in the search for a positive experience to allow him to 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 were often misunderstood as well. 

 

Twenty years after my oldest son’s diagnosis with Usher syndrome and a long struggle with the special education system, I received my Ph.D. in Special Education from the University of Northern Colorado. I am now a special education researcher focused on research specific to help families of children with low incidence disabilities. I am passionate about making the special education Individualized Education Program (IEP) process more collaborative. My research, advocacy, and family support work are rooted in my personal experience as a mom.

 

I enjoy helping families like mine by sharing my story and providing direct support. Reach out if I can support you in any way.

 

Lanya