This Saturday, many volunteers and those who care about Sammy will be building a fence for him. We were approached by the VFW in Boiling Springs recently about what Sammy needs right now in his life. At first, we thought of communication devices but since he already has an iPad, we came to the conclusion that the most beneficial thing for Sammy would be a fence. Sammy loves to go outside and walk around the yard, but because he has no recognition of danger -- he is totally unaware of the fact that it is not safe to wonder out of the yard, go into the street, approach dogs he doesn't know, etc. During the spring and summer, he often requests to go out back and walk around or swing, but without the proper supervision, he can't go out. Could you imagine wanting to just go sit outside but not being allowed because your mom was cooking dinner and you didn't know you weren't allowed to walk into the street? I couldn't. So, a fence is perfect -- Sammy can go outside and enjoy the sun without needing us to follow him around the yard. I can't wait for the fence.
This amazing gesture made me realize how thankful I am for those in Sammy's life who care about him. It also makes me thankful for volunteers and staff that work with individuals with special needs. I do what I do because I'm his sister. I have a personal connection to Autism but those who just volunteer their time or choose a career in this field amaze me. They take the time to get to know people like my brother so they can help him succeed. They want to make him happy and help him have more independence and a better life.
I am thankful for those of you who stop and say hi to Sammy when we arrive, and act like he deserves a simple greeting just like anyone else even if he doesn't make eye contact or respond. I am thankful for those of you apart of Camp PALS and Special Olympics and other organizations where you volunteer your time to have fun with people with special needs. I am thankful for therapists and teachers who help my brother and others. I am thankful for those of you who come to Sammy's birthdays and celebrations. I am thankful for those of you who give pep talks about what Sammy could achieve and will achieve. I am thankful for those of you who see a future for Sammy and support him no matter what. I am thankful for those of you who offer to watch him or get him a snack when we are at parties or events. There is an endless list of thank you's.
What I am most thankful for are those of you who treat him like a human being. The fact that you take the time to interact with him and care about him. Most people wouldn't give him a second look or bother because he might not respond or understand. But those of you who do take the time understand that Sammy is in there -- he is just like any of us and deserves human interaction.
I can't wait to see these amazing people build this fence for my baby brother. It is an heartwarming gift and gesture that I cannot put into words for how thankful and appreciative I am. Having a fence will let Sammy do something he loves just like any other 15 year old. If anyone is interested in coming to help or just wants to spend time with Sammy and our family, please contact me!
On Monday, Sammy had to have an MRI to just get an update on what was going on wtih him. He has to get these every so often (more often than most people, of course) so that doctors are able to stay up to date with any changes, complications, issues, etc.
Aside from having to have an MRI more often than the average person, Sammy doesn't understand that he has to remain still during the MRI. Therefore, we are forced to sedate him every time he goes through an MRI or a procedure like it. I wasn't able to be there on Monday, but I wish I could have. He has no idea what the doctors are doing to him or why it is being done. He just knows that he is in an unfamiliar place and being held down in an awkward position.
It may sound torturous, but what else are we suppose to do? We have to find out what's going on since he can't tell us. We have to do it right, and that can't be done because I have never.. ever.. seen this kid sit still. Sammy also gets blood work done every few months -- this is another insane and stressful event that we all endure. We need two staff members, myself or Jack, and my mom. One person holds his legs still, one person holds his arm, one person holds his upper body, and one person takes the blood. Could you imagine needing all of this just to get your blood drawn? Sammy resists and stresses and it is not a comfortable situation for him. If I were him, I'd think... what the hell guys?
Anyways, my mom hates to see Sammy sedated and it upsets her everytime. I talked to her after the MRI began and when it was over. She worries the entire time and I wish I could have been there for her and Sammy. I wouldn't have been able to change the fact that Sammy needs to be sedated but I'd like to think that both my mom and my presence would have comforted him a little. I also would hope that being there with my mom would have made it a little easier for her while she waited. She was alone with her thoughts in that waiting room while Sammy lay in the next room sedated. Could you imagine that little things like this can become all day events? You take off work or school, get sedated, have to wake up from anesthesia, etc. Nothing is simple with Autism.
On Monday, we watched a movie in my Autism class about two adults with Autism who were unable to communicate until they tried typing. Now as adults, they visit conferences and individuals with Autism all over the world to discuss their issues and advocacy. This is amazing. I would love to do this as a sister of Autism, but I would love it even more if Sammy was able to do something like this. Even if he didn't travel all over the world, as long as he could use something like a computer or iPad to communicate effectively. And I don't mean just to tell us when he wants to eat or drink; to tell us what he thinks about a certain issue or about his feelings. In this movie, these individuals carried on normal conversations. Granted, it took a little more time because they had to type it out, but it was so incredible.
One of the kids they adults visited mentioned that "Autism is lonely." This kills me. Is Sammy lonely? This kid was at least able to communicate. Sammy's communication is limited -- is he lonely? is he happy? is he bored? I'm a very outspoken person, I couldn't imagine having my communication restricted. How do people with Autism do it? Obviously, they have no choice -- but how can they stand it?
I can't even think about this, let alone finish the entry -- it hurts too much to think of how lonely the world of Autism might be -- how much pain is Sammy in? Why can't I do anything? I'm his older sister, I'm suppose to protect him from pain -- and I can't.
What do I want for this Awareness day? It's simple. I want people to stop staring, glaring, judging, and being so inconsiderate when they come in contact with my brother and others like him. We're all humans, he has feelings just like the rest of us. I want people to realize what Autism really is.
My brother is my sole inspiration for all of my goals and dreams. He is the reason I am who I am today. Without Sammy, I don't know where I would be or who I would be. I wonder if I would be judgmental? Would I be involved with the things that I am involved in? Sammy is a strong and amazing human being with such potential. I know, as his sister, that one day he will overcome the battle of Autism. I want others people to also see that. I want people to see in Sammy what I see in him.
I am thankful for my brother and for everything that he has taught me. I wouldn't change anything about our relationship as siblings. I love him and am so proud of everything he has and will accomplish. Autism isn't a disability, its just another hurdle someone has to jump to keep going. Sammy wakes up everyday and Autism hits him in the face and he is knocked down, but he continues to get up and keeps going. Sammy is the hardest worker I know.
1 in 88 are affected by Autism -- this number has grown so much in the past 15 years since my brother was first diagnosed. So many people are affected by Autism and I hope that World Autism Awareness Day will help people to be more understanding and compassionate. All around the world buildings and monuments are lit up in the color blue to spread awareness for Autism today. It's amazing what we can achieve to spread awareness, I wonder what we could achieve if everyone listened.
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.