For this past month, I have had the amazing opportunity of interning with our close friend, Jen Krom. While she was in college, she worked with Sammy and then went on to dedicate her career to helping individuals with Autism. She has created her own program where she focuses on the individuals and families affected by Autism. She offers behavioral assessments and plans, individual therapy, and swim lessons. Her program is going to change lives! This makes me so incredibly happy and appreciative for Sammy. He was lucky enough not only to have Jen in his life, but it amazes me that he made such an impact on her life. It is because of Jen and people like her that Sammy makes progress and is as great as he is.
I visited her in Connecticut and was able to shadow her, go to Autism support groups, work with clients on my own, and volunteer at the camp she works for. I was given so many opportunities and shown many eye opening experiences within the Autism field that I do not always have access to. I loved being able to be hands on and take behavioral data. I met incredible people, campers and counselors, at camp where I was able to create bonds with and share my PALS experience with them.
One of the most moving experiences I think I had was going to the support group with Jen. Although it was small and simple, I have never been to a support group as a sibling of Autism. I have always dreamed of creating and running my own for siblings. I have often even looked into going to them. I know that I really enjoy sharing experiences with other families, but I had never been in a support group setting. I loved being able to share my experiences with Sammy and see what other parents were facing as their child gets older. Having the opportunity to hear from other parents gave me another way to look at how my mom may be feeling.
Jen also gave me the opportunity to shadow a friend who works at a psych hospital. I was totally moved by the environment, I have always dreamed of working with less fortunate, mental health issues, or addiction problems - but being put right into the actual setting was eye opening. It really pushes me to get out there and help within these communities as well.
In addition to all of these amazing opportunities, Jen also showed me the other side of one on one contact with clients. She started her own business, which is a dream of mine, so it was great to see that side as well. My time in Connecticut was totally life changing. Jen is going to change the world of Autism and I am so honored to have had her work with my brother and to have learned from her. She is doing incredible things for many individuals and families, and what I loved about her vision was that she is not just trying to help the client, but also provides support for the family as well. I hope that I can one day follow in her foot steps and make as an incredible impact no the Autism community as she has. Please help her keep One Piece of the Puzzle going and to continue growing by donating here.
What's worse than being trapped in your own body and not being able to get what you want to say, think, feel out? I have observed my brother, my clients, etc. "get stuck" within themselves. I don't know if its stuck in their body or within their mind but it looks excruciating. Imagine not being able to control it.
I have a client that when told to turn off the computer, he will start to do it and right before he hits, "shut down," he will yell out "I'm sorry!" and keep playing the game. It's like he wants to listen and wants to follow through but something within him is not letting him finish that last step.
Can you imagine not being able to move on until a task was completed? Not because you are devoted to completing everything before you do something else, but because you literally cannot stop to take a break, answer the phone, go eat, etc. because your body physically won't let you.
Everyday before school, my brother has to close every door on the second floor of our house before he is able to move on, go downstairs, eat breakfast, and get on the bus. If he is forced to go down without closing the doors - MELTDOWN! Or, if he realizes he didn't close them, for whatever reason, he stops what he is doing and rushes upstairs to close them. One day when I was getting him ready, he stopped dead in his tracks on his way to the bus and refused to move until I allowed him to go back inside. He ran upstairs to close my door that was slightly cracked open. How did he even know? I thought he had closed it earlier that morning!
Everyday, we get in our cars and realize that we left our bedroom light on. The majority of us will probably just go about our drive (because I'm sure we're all running late) and forget about it. What if you couldn't? What if you HAD to turn your car around and go turn off the light? I'm not talking about something like an over or curling iron - which could be detrimental if you left it on, but a light! Something so little, that you didn't want to leave on but you did. Tough luck, you move on. But what if you got stuck on that? You couldn't move past it. You couldn't follow through or concentrate on anything else until you knew it was turned off.
Could you imagine a day being ruined by leaving a light on? Could you imagine feeling so uneasy within yourself because of a light? And what sucks, is that I doubt my brother or anyone else can even stand this feeling. They would probably love to just walk out that door and forget about that stupid door that they didn't close, but deep down they are driven to turn around and go close it because if not, they will be a mess inside for the remainder of the day. Even more stuck inside themselves than they were before.
Autism from a sibling's point of view...
My name is Paige and I am 26 years old. I graduated from Towson University with a Psychology Bachelors Degree and from Johns Hopkins with a Post-Bacc Certificate in Education of Autism and other Pervasive Disorders at . I recently left my job at Kennedy Krieger Institute and began my Master's Degree in Applied Behavior Analysis at University of South Florida. My younger brother, Sammy, is 20 and has Autism. He is non-vocal, 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.