As Autism Awareness month ends, I realize how much time has passed since my last post. I started to tell myself that work had gotten too crazy, that I haven't had enough time, things with Sammy are going smoothly, etc. and that was the reason for my lack of writing. However, the more and more I thought about it and reviewed my last post. It became clear to me.
My last post was about the guardianship verdict. I cringe at the thought of that day. Even though it wasn't a terrible verdict, it wasn't the one I wanted. It wasn't the one any of us wanted, really. Something I had worked so hard for all of these years came down to one day and the outcome wasn't what I worked for. And what gets to me is that this wasn't something I resented or sweat over because the work needed to be done. It was something I truly wanted to do. It was something that came natural to me. It was something that I just knew deep down that I would do it. Being Sammy's guardian, caretaker, whatever you want to call it isn't work to me. It is an honor.
Which is why I think this issue is so bothersome to me. Others may think taking over Sammy is work. I'll agree, it is work. Definitely not work many other 24 year olds would voluntarily take on. My mom goes through a lot raising him all on her own and there are certainly harder days. However, being Sammy's guardian isn't work when it is something I wanted more than anything in the world.
I want to make sure he gets what he deserves if anything happens to my mom. I want to make sure I can give a professional opinion for him based on my own job experiences. I don't want my brother to ever get screwed. I don't want him to be neglected. Or end up in anything or with anyone that is less than the best.
It is times like these that I wonder, why do people work so hard? Why do they put their blood, sweat, and tears into something? Does it ever really work out? Do they ever really achieve their goal? When people are good people - do they ever really get rewarded for it? Don't get me wrong, I wasn't doing this for the pat on the back. I was doing this because he is my brother. Because I wanted to. But even though I have enjoyed all of my experiences - I could have done nothing and gotten the same verdict. Just like, my mom has done everything and now has to share the same title with someone who has done little to nothing in comparison to her.
So, I started to realize that maybe writing became something that didn't matter as much to me anymore. Maybe it wasn't worth it. Maybe I wasn't making the impact or awareness that I was hoping for. I'm still as involved as I was before the hearing. I still set all of my career goals around Sammy. I just don't write about any of it. It was the sole thing that was used in court to show my dedication to Sammy. And the verdict kind of showed the opposite of the dedication I have. I don't need someone to measure my efforts or rate them - all I want is to be a good sister.
Autism from a sibling's point of view...
My name is Paige and I am 24 years old. I graduated from Towson University with a Psychology Bachelors Degree. I am now working towards my Master's in Education of Autism and other Pervasive Disorders at Johns Hopkins. I am also a Behavior Data Specialist at the Kennedy Krieger Institute Neurobehavioral Inpatient Unit. My younger brother, Sammy, is 19 and has Autism. He is completely non-verbal, unaware of safety, is not toilet trained, cannot get himself dressed, and has difficulty with everyday activities that we all take advantage of. He works harder every single day of his life than anyone I know and he always does it with a smile on his face. He is my true hero and inspiration and because of him, I have dedicated my life to advocating and creating opportunities for individuals with Autism. I hope that I can make him proud and this blog is just a small part of the awareness I hope I can create about Autism and support other siblings impacted by Autism. I love you Sammy - thank you for everything.