In addition to being the mom to four boys, including Conner and Dalton who have Usher syndrome, I am pursuing my Ph.D. in Special Education at the University of Northern Colorado. My research interests are deafblindness and family-professional partnerships. I hope to use this blog to share updates on my family and my research. My goal is to provide information and support for families living with Usher syndrome. Research into a cure is vitally important, but I know from experience, family support in dealing with day-to-day issues is critical as well. Thanks for reading.
Helping my son overcome college challenges
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
I’m so grateful for our USH family
I just returned from a trip to New York and New Jersey with Hunter and Dalton, and I have been reflecting on where we are in our journey living with Usher Syndrome. Dalton has been really struggling this last year with acceptance of Usher syndrome. At age 10, he doesn’t want to be different. He doesn’t want to ask his teachers for help. That resulted in him experiencing a lot of anxiety and he started to get further behind in school. He has attended a private school but he is also dual-enrolled and has been served by an amazing IEP team at our local district. His orientation and mobility specialist has been working with him on self-determination and self-advocacy. I’ve also been teaching him how to actively participate in his IEP meetings. But, the last two years have been rough. Most days he’s so exhausted at the end of the day that he is in tears. Although his hearing is good with his cochlear implants, when he would start his homework, we would realize that he was missing a lot of information at school. He had no idea how to do his homework and it would really upset him. No one at school really knew how to help him.
At the end of the school year, for various reasons, we realized that we were going to need to find a different school for Dalton and his 11-year-old brother, Hunter. They both have such amazing friends at this school and so this makes us all sad. But, unfortunately, the system for student support at this school is not going in the direction that I think it needs to go in. So, we made the decision to move Dalton back to our neighborhood school. We had his first IEP meeting with the new team and I knew we were making the right decision, although change is scary. Dalton and I were surrounded by a room of caring team members who valued our opinions and really listened to our needs and concerns. I felt like a true equal member of the team.
We have had even more change in our lives. Conner is heading to college soon. He’s only going to be home for 2 more weeks this summer before he moves into his dorm. Dalton is sad that his big brother is moving away…his big brother who understands Usher, who understands what he is going through. I am also going through mixed emotions but mostly those emotions now are mostly the same as any parent would feel when their child goes to college. I know he is ready and I know he has the self-determination necessary to be successful.
All this said, it’s been stressful. We tried to figure out how to go to the Usher Syndrome conference in Germany but we just couldn’t make the trip. So, when I heard about the Usher Society’s fundraiser and partnership between Usher advocate Rebecca Alexander and the MLB, I reached out to Carly Fredricks with Ava’s Voice and asked if we could come visit her and ride to the game with her. She has kids the same age as ours and I thought it would be good for Dalton and Hunter to hang out with them.
We had an amazing trip. Not only did we have a great time visiting New York City and doing lots of fun things, being around our USH Family was exactly what we needed. For me, it gave me a renewed sense of purpose to keep helping families. I met so many families that I had only met on Facebook and it was so nice to be around people who understand what we are going through. For Dalton, he gained so much confidence in a short amount of time. He and Hunter both hit it off instantly with all the Fredrick kids.
This all came at the perfect time when we needed our USH family the most. I feel so blessed to be on this journey with so many families who help us when we need it the most. Thank you to our USH family.
Conner shares his journey to acceptance
Being Conner’s mom is such a joy for me. He has overcome huge obstacles and works so hard to achieve his goals. I can’t believe it’s almost time for him to head to college. He will start at the Honors College at Oregon State University in the fall. We are beyond proud, but we know it has not been easy. In an essay for a college-level English class, Conner wrote eloquently and candidly about his journey toward learning to accept and live with Usher and not let it define or limit him. I share some of it here with this permission.
“I can’t say when it was exactly when I stopped looking at my disability as a limitation. Now I choose to look at it as a way to gain a new perspective on the world and the good that I could do. My disability is the reason I want to become a geneticist, so I can help people who have genetic disorders like me, and possibly help alleviate the symptoms. I also want to be a geneticist to show my younger brother, who has the same disabilities that I do, that he can achieve his dreams if he wants to, and that his disability does not control him. I want him to be and do whatever it is that he desires. I want him to be able to run carefree without worry like I do now. I want him to be able to play sports with other kids, and I want him to live his life without worry about what he can’t do because he can’t see or hear. I want him to be able to choose his own path. I just hope he accepts it earlier than I did.”
You can read his powerful essay here. Thank you, Conner, for everything you do for our family and the example you set for all your brothers, especially Dalton.
Guest podcast with Portland State
As part of my efforts to help more families dealing with Usher syndrome, I was happy to be interviewed by Professor Amy Parker of Portland State University for her Orientation and Mobility On the Go Podcast. In this podcast, I share insights with Amy about the role of the Orientation and Mobility Specialist in supporting the development of self-determination skills from my perspective as a mother and from the perspective of a graduate researcher. I include practical advice for O&M students and practitioners for working with individuals, families and teams. You can listen to the podcast or read a transcript. Thanks, Professor Parker, for the opportunity.
IEP Experiences Podcast
I’m excited to share my podcast about raising two sons with Usher syndrome. In my first episode, I tell you a little about my family, and our experience working with IEP teams. It can be stressful trying to advocate for your child, and I have learned a lot along the way about working with schools to support my sons Conner and Dalton. One of the best things we did was allow our kids to have input into their their IEPs, so I talk about the benefits of student involvement. My hope is to provide support, guidance, and advocacy for other families.
Presenting research at the DbI Network of Americas conference
I had the privilege of attending and presenting at the first-ever Network of the Americas Conference sponsored by Deafblind International and Perkins School for the Blind April 16. Leaders in the field of deafblindness from 20 countries in North America, Central America, South America and the Caribbean attended this major conference.
I was part of a team that presented preliminary data from research on Parent-School Collaboration and Conflict: Experiences of Parents with Deafblindness During the IEP Process. This research involved interviewing many families who have been through this difficult journey with their children. I feel so blessed to have talked with so many amazing, strong, families. I remain hopeful that this research helps lead to positive changes regarding family engagement, collaboration, and partnership.
I was joined by my mentors and co-researchers, Dr. Silvia Correa Torres, Dr. Sandy Bowen, and Dr. Tracy Mueller (who could not attend the conference.) I’m so grateful for their knowledge and support, and I look forward to completing this research and making a difference for people who are working with school systems to support their kids.
I also had the opportunity to present my research on Teaching Self-Determination Skills to Elementary Students with Vision Loss at the same conference. This topic is important to me because of my experiences with Conner and Dalton. Conner attended his first IEP meeting at age 16, and until then, we had not thought about transition. I really wanted to understand what was possible for my younger son. Because of what I learned about self-determination, I was able to talk to Dalton’s O&M instructor, who is know working on self-determination skills with him. Last month Dalton attended his first IEP meeting, and at the age of 9, he was able to communicate his needs directly to his IEP team. This has resulted in a much more positive experience for him at school.
We were honored to receive the Foresight Award
Todd and I were so honored to receive the Foresight Award from the Usher Syndrome Coalition in 2017. We are gratified by the recognition, mostly because it helps draw attention to the many people like us who are focused on funding research and treatment.
Since we started Hear See Hope in 2004, it has been a journey of learning and growing relationships with others working toward the same goals. Hear See Hope was a founding member of the Coalition, whose mission is to raise awareness and accelerate research into the most common genetic cause of deafblindness. It’s so rewarding to work together with other committed and compassionate people, including families, physicians, researchers, organizations, and funders to find a cure.
Usher Syndrome Awareness Day
Gov. Jay Inslee declared Sept. 16, 2017 Usher Syndrome Awareness Day in Washington. We wrote to the governor and asked him to join other states in making the proclamation to draw attention to Usher and the many families it affects in our state and country. Conner was so proud to hold the proclamation. This is just one step in our advocacy efforts, but it’s an important one.
Many people don’t know about Usher – and that it’s the leading cause of deafblindness in the nation. We hope to make this an annual proclamation. Thanks to Gov. Inslee for his support of our cause.
Raising Awareness about Usher with our lawmakers
One of the ways Hear See Hope works to raise awareness of Usher syndrome is through our lawmakers. Todd and I met with Sen. Patty Murray in 2015 to educate her about the disease and the many families it affects. We appreciate her meeting with us and asking us about Usher and the work we’ve done through Hear See Hope to support not only Conner and Dalton, but other families who are living with Usher.