When you imagine having a child, do you imagine still changing diapers at age 16? Do you imagine still packing up a to-go bag full of snacks, toys, and diapers for them when you are going somewhere for a few hours? Absolutely not! But at 16, my brother still needs this to-go bag. I mean, everyone has their purse or their things they want to bring on a road trip -- but most kids by 16 can collect all of their belongings by themselves. Sammy cannot at this time. What does his bag consist of? Diapers, wipes, extra clothes, apple sauce for medicine, medicine, toys, communication book. Not to mention, my mom has to get him completely dressed and ready to go before they even head out the door. Not that any of this is Sammy's fault, but who seriously thinks they're going to be packing a diaper bag when their child is 16 years old?
Yesterday, my family road tripped down to MD to see me and in walked my mom with precisely this -- Sammy's to go bag. Although more comfortable in my house, usually, my mom would be found stressing and following Sammy around to make sure he didn't get into anything or pee on something. As soon as hit feet the kitchen though, he was off. A kitchen full of unprotected and unlocked cupboards. His dream come true. At home, there are locks on the fridge and cabinets so Sammy cannot get into them and eat endless amounts of food, or worse -- drink who knows what. Within minutes, I found a way to lock up each cabinet because there was no way we were going to relax and enjoy the day if someone had to constantly be on him. Other than that though, he was such a sweetie! He was loving the TV and couch in the living room and hung out downstairs listening to music.
I know that this might not sound like much and I know that many of you give Sammy this respect, but these little things are what really matter to me. My roommate and close friend, Laura, paid no attention to Sammy's mischief acted like she has been around Sammy for years -- blocking him from the cabinets and redirecting him. But what I loved the most was that most people would be pulled on by Sammy and just ignore it and move on -- but when Sammy pulled on Laura, she followed him and tried to figure out what he needed and offered things to him. She's amazing! Another thing that I loved was that during our traditional Hi-Lo game at dinner time, our friend, Ben (who is 15), said that his high was, "spending time with Paige, Sammy, Jack, and Michele." Although, so simple -- it was so sweet! To include Sammy means so much to me and it made my heart melt. I don't know what I'd do without these great people in his life!
Today, I watched, "Best Kept Secret." It is a documentary about a young teacher (Janet Mino) in Newark, NJ working with students with Autism, who are also in poverty. This documentary was so inspiring in so many ways. I hope to be like Janet, or even have the chance to talk/work with her one day. She went to work everyday but instead of leaving her students' troubles at the door when the school bell rang, she went home and carried those problems with her like they were her own children.
I often wonder why I can be so happy in one job and then so unhappy in the next. All dealing with helping those with special needs and I always LOVE my clients -- but sometimes, I can dread going to work and I never understood why. Sometimes, I thought it was because of the atmosphere, I was tired, I was stressed, I was jealous those who could communicate (unlike my brother), etc. However, after watching Janet with her students and spending tons of hours outside of her job on them, I finally figured out my problem with some of my jobs.
When I go into some of my jobs, the co-workers, mentor, boss are there and obviously care for their clients. However, theres a different type of a "care" that I think some people have. There are people who come in, try to help their client as much as possible, and go home at the end of the day. There are people who go home every night and think about their clients. For instance, I have one friend that works for me who noticed one of our clients walks on his toes and ruined all of his shoes. My friend, had old shoes that helped "toe walkers" and brought it in for him to try/have. That's the true meaning of really caring. Janet would visit each opportunity that her students may have for after high school programs, and would not only tour the place, but insist on certain things being implemented for her unique student. Janet's view was that these young people should not be put in an assembly line to just do work all day to keep them busy -- they should be continuing their education, doing things they love, having a social life, and working. Some may argue that "no one helps us after we leave our 9-5 job" but these individuals are different! And not different because of their disabilities, but different because they need the extra helping hand. Not to focus on their disability, but to help them have a good quality of life.
I think this is the reason that even though when I dislike my job to the extreme, I stay, because I want the best for my clients. I can't bare to leave them and not be there to see them progress or get them the help they need. I wish I could take the majority of them home with me every night just so I know that they are safe, continuing to learn, and enjoying their life. I dislike jobs because things are done so differently when there is a different type of "caring" that exists in the work place from what I expect because of my own passion. Is this because I am a sister? No. I don't think so because there are plenty of people I know that go the extra mile every single day and have no relations to Autism or other special needs at all.
I give a lot of the credit to Mrs. Zink, my Life Skills internship mentor, for helping me become the person I am today. Other than my brother, she was the first person I learned from about disabilities, how they were to be treated, and how you could help them. She always went the extra mile for her students, continued to stay in touch with them after they graduated, and cared about their well-being after they left school at the end of the day. She's an amazing teacher and I wish there were more people like her in this world to help individuals like my brother.
Anyways, after coming to this realization... I decided that I not only wanted to continue my goal to create an adult program for people with Autism (since there are so few) but I want to mainly work with those who are not as fortunate. There is no reason an individual should "fall off the cliff" just because they aged out or don't have enough money for the treatment they need. Everyone deserves a good quality of life.
Please watch "Best Kept Secret" (TRAILER) >>>>>>
I know that I can often express what I am feeling or what it is like to be a sister of Autism. I know that I can often think about what it must be like, or even try to imagine it. But, I literally have no idea what it is like to be stuck in your head, voiceless, like my brother. I have no idea what its like to get stuck on a particular thing or get frustrated over something I take advantage of every day. I can appreciate the fact that I can use the bathroom and brush my teeth, but I will never know what it means to be dependent on someone else like my brother (or my clients) can be.
I've been doing a lot of writing and analyzing literature/poems/etc. and decided that maybe I could write something about what I've been wondering: what it feels to be Autistic, what it feels like to not have a voice, what its like to be stuck in your head. For some reason, when I've overloaded with my own thoughts, I feel like I am drowning inside of my mind. So, I thought, maybe thats how Sammy feels? I know that I will never "get" exactly what he or anyone else with Autism goes through. I tried to put what it might be like for someone with Autism to constantly be inside their head, unable to express what they're thinking, and for the world around them not to even know what to do for them or even understand what is happening. I feel like, in some cases, people with Autism may not even understand what is going on with them. Why can everyone else talk? Why can everyone else do things independently? Anyways, here it is!
Lost in that sea of thoughts
Always drowning, no surface in sight
Struggling to keep paddling
With everyone around you
In their boats and life jackets
They watch you gulp in the tons of water
But no one moves
You wonder why no one moves
No one knows what to do
You gasp for air and try to scream
Falling deeper and deeper to the bottom
Each face looks less intrigued
They are more helpless than you are
You scramble for the help you need
Your arms get heavier
Your heart pounds harder
No help is coming
It’s like you can’t do anything
Helpless and under heavy water
People try to help you up now
But not even the strongest could pull you up
You know only what you have to do
It’s all up to you, You have to do it
Spending the last two weeks with my family was absolutely amazing. It is very rare that I get this kind of time with them after moving to Maryland. It was especially important to me because I was able to spend so much time with Sammy, which I rarely get these days since he goes to and from school and his dad's.
Seeing Sammy always makes me happy. It always reminds me of what is important in the world. All of my petty minimal issues get thrown out the window, because he reminds me to be thankful. He goes through so much, yet wakes up with a smile on his face everyday. Even if he is mad, its obviously totally justified, but its not even as mad I could ever imagine being if I couldn't express my needs and wants. I would be livid if people were constantly speaking for me and I couldn't be independent. Sammy is 16. Think back to when you were 16, not only were you probably starting to drive, but you were fighting for your independence. Sammy requires someone to succeed. He needs someone's help 24/7. And not just with the difficult things, he needs it for the most simplest things. Like going to the bathroom or getting dressed. What happens to your dignity?
I am so thankful for Sammy being in my life because he has made me the person I am. But also, he has taught me a lot. He shows me there are so many things to be happy for and there are so many things we take advantage of.
One of my favorite moments while I was home was when Sammy and I were sitting in my room. We do this a lot, just lay on the bed, relax and listen to music. I usually shoot ideas at him because I know he's listening. But, of course, he peed... EVERYWHERE! So, I kicked him out of my room and an hour later, my mom let him in and he came in, laid next to me and gave me a kiss on the cheek. An obvious apology! The most thoughtful thing I have ever experienced. Even though he's a shit head, he's lovable.
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.