I am an aunt to a 26 year old “special needs” man. My nephew was born when I was 10, and I cannot explain my excitement to what I viewed as something so monumental at the time. I was going to be an aunt, and as an aunt I had a LOT of work to do and so many things to teach this tiny creature!! The ways he’d eventually teach all of us and change everyone’s lives was something no one could have imagined.
Growing up I knew he was different, but he was just a kid and (let’s face it)… Kids Are Weird! He was always quick with a smile and a helping hand. He had a fair amount of trouble in school, but I never thought it was really that serious. I don’t know a single kid that didn’t talk back to a teacher here and there or get into some kind of trouble. He was smart and so bright – and he knew it. Eventually, though, he was having enough issues that his mom agreed to let him quit school as long as he got his GED.
As he grew, I watched him change. A LOT. The happy, always willing to help, up for an adventure kid I always known was withdrawing into himself more and more. He didn’t want to come over to visit as much, he didn’t want to run to the store with me… his comfort zone was shrinking. Fast. I couldn’t understand it. If I wanted to see him, I had to go to his house. We went from him coming over to watch my kiddo if I needed him to I had to bring the kiddo to him. I wondered if it was anything I’d done.
One day we ended up with a harsh blow. My nephew knew something was wrong, and it took so much courage for him to tell his mom that he *NEEDED* to go to the doctor. Saying he was scared is an understatement. After many tests, the removal of a testicle, and even more tests he was given a diagnosis the day after his 21st birthday. He had testicular cancer. (Just the thought of it still makes me sick to my stomach, but this isn’t about me so I digress.) They went after it aggressively. Lots of Chemo, which resulted in full on Alopecia, dramatic weight loss, and a host of other issues. My nephew almost made it to the one year cancer-free mark. Unfortunately, just weeks before Christmas, the doctors found that the cancer had spread to his lymph nodes. Yes another surgery just days before Christmas. Sparing the gory details, they removed his lymph nodes in his abdomen. It’s an incredibly ugly and an unbearably painful surgery. Nearly 5 years after this surgery, he is now just a couple of months away from being declared in full remission.
It was during this time that I’d begun to learn more about the issues that had plagued him before his cancer. It nearly shattered my heart and made me angry. I’ve also come to realize that no matter how “around” I could’ve/should’ve/would’ve been, chances are I wouldn’t have been able to stop it. Learning these things has given me a better understanding of why he is who he is today.
My sister decided it was time to get some answers and finally found a doctor that she believed could help figure out what was really going on with my nephew after years of searching, seeing many doctors, and not getting answers. It took a while, but my nephew finally started to trust this doctor and talk to her. The doctor decided to have some tests done, and most people would stay that the diagnoses were another harsh blow, but for our family, it answered so many things. We are thankful for the knowledge! At the age of 25, my nephew was diagnosed with Asperger’s, Dyslexia, Dysgraphia, Agoraphobia, Social Anxiety, Depression, Anxiety (general), ADHD, and PTSD.
Despite all those diagnoses, that is not WHO HE IS. WHO HE IS is a compassionate, joke making, teasing, amazing, smart, loving, funny, straight forward, sarcastic guy who would go to the ends of the earth for you – as long as the end of the earth is the end of his driveway! (I’m joking. He’d get it.) I have never seen him as anything that has to do with special needs. He’s always been… well… just HIM.
And this? This is not the end of his story. There’s still a long way to go!