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.