Today I started the day in tears in my car, a reminder of the long emotional few weeks our family has been through.
A few months ago, our two middle schoolers, Hunter and Dalton, started to struggle in school. The reasons were different but the family impact was the same. The reality is that we needed to move both of them to a new school that could better serve their needs, preferably a place where we could keep both boys together. Finding a “right fit” school for our son, Hunter, was not easy at all but Todd and i ultimately found a good fit. He started last week and it’s been a fairly smooth transition. Dalton starts at that same school in a few weeks.
The situation for Dalton is more complex. Dalton has Usher syndrome, a leading genetic cause of deafblindness. Because Usher is a low incidence disability, there is often a lack of IEP knowledge of the syndrome. To make things more complex, Usher syndrome presents differently for each individual and therefore, classroom impacts can vary.
As many of you know, I have done a lot of work in the area of family support related to deafblindness. Even though I have knowledge about deafblindness and what supports and services can help kids like mine, things still break down. Things are still hard. I often do not have the answers. Neither does anyone else on the IEP team.
Because I work with many families and often wear a ‘special education researcher’ hat, I try to remain positive. But there are days like today that it’s hard to do that. It’s not easy. It breaks my heart that our 11 year old son has to make difficult choices. Dalton loved his school. He was just elected as 6th grade student representative, has many friends, and was doing ok academically. However, for many structural and systemic reasons, things weren’t working.
All the emotional impact of the last several weeks finally hit me today. This morning, I did a healthy thing. I allowed myself to feel sad – because he had to make the difficult decision to leave his 6th grade representative seat and his friends and teachers he loved. I was also frustrated that he has had to know so much about special education for an 11 year old.
But most of all I’m proud of all of my kids. They are strong, They are resilient and they are my everything. When I walked into the house this morning, Dalton told me, “It’s OK mom. I’m going to be OK. Please don’t stress. I know you will help me and I ‘got this’” I am also reminded of the importance of family-to-family support. I picked up my phone and texted a few fellow Usher syndrome mom friends. That simple text exchange was all I needed to get through the day. I knew that I was not alone and that there is an entire community of support. I am also thankful for my husband that listened as I cried and Conner who agreed to FaceTime his mama.
Tomorrow will be another day. I will continue my work: advocating for my boys, trying to improve educational experiences for children with disabilities, providing family support, and trying to remove systemic and structural barriers related to special education. And, I will continue to practice self-care, something I’m not great at!
If you are going through something similar, know you are not alone. If you ever go through sometime similar, reach out anytime. It takes a village.
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.