James' Story

Age: 30-years-old

State or Country: United States

Date of Diagnosis: 2020

What is the hardest part of your day? There is no handbook on what you need to know to raise these special individuals. James needs help with all daily living skills, and redirection with behavior. His mobility has decreased  as of his twenties, and has presented a greater challenge with his care that is more physically demanding.  

What does your child struggle with? James is a 30-year-old man with a 3-year-old mind. He exhibits frustrations and emotions similar to a toddler, but has the body of an adult. His neuropathy has caused a decrease in his mobility, requiring him to wear AFO's, and making it difficult for him to steadily walk anymore. He tends to perseverate on daily events, especially if he is looking forward to it. Because his language is limited, he will repeat questions over and over in order to engage in conversation. 

What brings your child joy? James is loving and very social, he loves watching sporting events like basketball, hockey, and football. He attends many local high school games and is their biggest fan! His smile allows him to make many friends and connections wherever he goes. 

What do you hope for your child? We hope that James continues to gather with friends and family in the community and feels safe, secure and useful in his day program. When the time comes that he needs to move from our home to a different residence, we hope that he will be cared for with kindness, compassion, and dignity and that his caregivers continue to nourish his need for friends and activities.  We have seen a slow decline in his ability and confidence getting around independently - from what we can only assume is the progression of peripheral neuropathy. We hope that he will continue to do so without pain and discomfort.