The Christmas Tree is up well before Christmas. Peter LOVES Christmas. We told Peter that we wouldn’t start decorating for Christmas until after Halloween. On Halloween day Peter was asking when can we take down the Fall decorations. At first, I had no clue why. Then we remembered that Halloween was when we told him that we could start to put up Christmas decorations.
Sometimes life happens early, sometimes things aren’t quite in the right spot. My 9-year-old is losing his memory. He is experiencing some of the symptoms of childhood dementia that come with his Battens diagnosis. He also struggles with sensory and processing issues. On some things he is getting too much input and in other areas not enough.
Memory is a tricky thing when you love someone with dementia. Peter’s childhood dementia and sensory issues have been the things we have struggled with the most over the last few months. The struggles don’t always look the same, the behaviors aren’t always easily traced back to this one thing, but the struggle is real and often results in tears, frustration and even anger.
Sometimes it looks like being upset that we can’t do the thing he wants or finish something right now and we are able to get at the heart of the issue; a lot of time it is because he is afraid he is going to forget what he was doing or wants to do. Sometime it is tears or anger because he can’t remember a concept he knew or can’t finish a task because he doesn’t remember how or what his plan was. Other times it is digging in his heels and refusing to do anything other than what he wants at that moment. Other times he struggles to control his body or to deal with sensations or the way things feel or taste. He is on the move almost non-stop. Sometimes it is normal 9-year-old boy energy and other times it is clear that he is searching or needing something that we don’t know what it is or how to help.
After trying to handle things on our own for a bit we reached out to his Battens team at Nationwide to see about possible help and advice. From those conversations and our own research, we are going to be trying a few things to see if they will help. One is a new therapy type that other Battens families have found success with, ABA therapy. The other is working with Occupational Therapy to understand what his sensory needs are and how we can help to meet those in both the home and school setting. We are hopeful these new tools and therapies will help Peter to be more regulated. That will (hopefully) in turn, make for a happier and less emotional boy who can focus on playing with his brother or whatever project he wants to do instead trying to deal with big emotions. The hope is also that this will help the sleep issues that are ever present.
Thanksgiving is next week, and Advent starts right after. In this season of thankfulness and of waiting and preparing for the birth of the Christ child, we continue to hope and to be thankful. Even though the frustrations are many and at time overwhelming, there are still many moments of laughter, joy, happiness, and family memories. We are thankful for TEAM PETER and for everyone who joins us in helping Peter live his best life for as long as possible. We are thankful for our family and jobs/ministries. We are hopeful that these new therapies and interventions will be helpful. We continue to hope for a scientific breakthrough to help Peter and all those who have Battens. Ultimately, we have our hope in Christ, who allows us to walk this journey with grace, hope and even joy.
It you are still reading - Choose Joy no matter the circumstances.