Usher syndrome has taught me so much. We have good days and days that challenge us. This week has been filled with challenges.
We are so excited to have Conner come home for Christmas break during his first year at college. It is a blessing to have all our kids in our house for the holidays. We’ve missed him so much. Once he returned last week, however, I just had a mom’s intuition that something was wrong. We had been down to visit him a few times, and all seemed ok, but something was slightly off. Upon talking with him this week, we found out that he had received an academic warning for his first quarter at OSU. After the initial shock that our strong academic student was getting bad grades, I knew this wasn’t an academic issue.
There had to be something more.
After more conversation with him, it was evident that he was depressed and unhappy at college. Although he was receiving amazing disability support services, it wasn’t enough. He said that he thought that everyone just looked at him like “the blind kid.” This breaks my heart. We’ve taught him that he can do anything he wants to do. He’s a motivated student and a strong self-advocate. But, because he didn’t feel like part of the community, the support services aren’t enough. He is now faced with some difficult decisions about the next year.
I have mixed emotions about all of this. My heart breaks because Conner is hurting. I push away the feelings of “Why does it have to be this way? Why does he have to have Usher syndrome?”. I remind myself that Usher syndrome has made our family closer. It has taught us lessons that we would have never learned. It has made all of us stronger. We have met people and experienced life in ways we would never have.
I get asked all the time why I went back to school. This is why.
You see, until I started in my Ph.D. program, I had no idea that Conner needed a transition plan. I didn’t understand the importance of teaching him to be self-determined. He was 17 when I started my Ph.D. program and I realized this. No one who understood deafblindness was on his IEP team. His IEP had always been focused on academics and not on other areas of the expanded core curriculum, like self-determination. He had never even seen his IEP until that time. He had attended only one IEP meeting, at the age of 16, because it was required.
In that meeting, no one acknowledged him being there other than to turn to him to ask him what they should write about his future career goals. It didn’t feel right to me, but I didn’t understand why. I now know that this wasn’t active participation. This wasn’t an adequate transition plan. His IEP goals did not align with his post-secondary goals. In the last two years, I’ve tried to make up lost time so that he would be prepared for college and could achieve his dreams of being a geneticist. We involved him in his meetings. We tried to think of all the things he would need to learn to do to live independently and to be successful in college. The system failed him. We failed him. I wish we had more time to prepare him to be on his own, for a world in which some people may see him for his disability before his strengths.
Like we have done many times, we will pick ourselves up and learn from these experiences. We have some tough decisions ahead. He wants to leave college and have a gap year. We’ve never thought about what this might look like, and we need to research options. We need to reassess what skills he needs to be successful in college and beyond.
He wants to be around people who are “like him,” where he doesn’t feel like the “blind kid.” So, we will travel to the Rochester Institute of Technology to find out about their Deaf and Hard of Hearing program, to see if that is a better fit for him. Most importantly, we will love him, support him, and help him to figure out how to reassess his plans and goals. We will learn from the past, but we will look forward. We will be thankful for all the blessings we have in life.
I am even more passionate about improving transition for students with disabilities, to prepare them for their post-secondary goals. I want to help provide equal opportunities for all students. Although we’ve come a long way, more work needs to be done to make inclusion successful. Conner shouldn’t have been given a dorm room in a dark hallway with no roommate and a private bathroom. Although our teenage son thought the room was cool, this is not inclusion. Tomorrow is another day. We will help Conner adjust his plans. We will make sure Dalton learns from this experience as well. I will do what I can to improve outcomes for students who are deafblind. Our family will be stronger because of it. #USHThis
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.