At the beginning of this week, I skyped with one of my good friends, Erin Johnson. She is a teacher and has been teaching her 4th graders about disabilities and equality. More specifically, she has been talking to them about Autism. She had approached me a few months ago and asked if I would be interested in skyping with her students to answer some of their questions. Of course, I agreed and it was a great experience!
Not only was I astonished by how mature each question seemed to be, but how interested the students were about Sammy. Their questions ranged from asking me what Sammy does in his free time, how he communicates, what we do when he is teased, to why I created my blog. That question alone stopped my in my tracks. For as long as I have written my blog and for as many people read it, I have never been asked why I write it. Maybe it is because it is obvious... but is it?
I write my blog for many reasons. There is so much out there for parents, but very few for a sibling. There are so many blogs out there that give voice to the higher functioning side of the spectrum because those individuals are able to speak their mind and create a blog. There are not a lot of blogs out there for people like Sammy, because they are unable. So, not only do I want to spread Autism awareness, but I want to give a voice for people who are the side of the spectrum that Sammy is on, and to help other siblings out there.
Speaking with Erin's class was really eye opening and gave me a lot of great ideas. It is so amazing how much we can all make a difference if we just talk to people and explain. Her class is so accepting of and interested in Sammy. Hats off to Erin for being such an amazing person and teaching such a great lesson! It meant so much to me that her students were so interested and sweet regarding my brother.
Thank you to Erin's class for being so accepting and loving -- and for their wonderful questions and inspiration for future blog ideas!
Recently, I contacted our local newspaper to share the amazing deed that the BS VFW did for us, regarding the building of the fence. We also made the Sentinel aware of how many obstacles the township has put us all through - and continues to do so. The Sentinel wrote a story about it and Sammy made the front page! Please read the article here.
Please help us and support the VFW keep Sammy's fence! It was an amazing deed and something that I will forever appreciate -- it seems like something so simple, but it means the world to my brother, I don't understand why a few regulations need to ruin such a great thing.
It really rips me apart that something like this is overshadowed by the obstacles we have been facing. The spotlight should be on how amazing and thoughtful Bill Hartman and the VFW have been. That is all that matters!
My love for my brother is unconditional, but knowing that there are other people out there that feel the same way and want to go to great lengths and overcome such issues (like this one with the township) means the world to me. My brother is an amazing person and deserves every bit of that fence, and more. We take advantage of our independence every day. You can walk out and get the mail and knowing what street safety is isn't a second thought - you just know. Could you imagine being cooped up in the house because you didn't understand it was safe to stay in the yard and no one had time to come and follow you around outside? Sammy's intense needs restrict him from being a human being everyday, the fence gives him freedom - and for that, I thank the VFW and now the Sentinel.
As much as I fear for my brother's future, I also fear for my own. He is a huge part of my life, in fact he is the main push for most of the things I do in life. I am thankful for him and he is my inspiration - his future is my future. And that, is what I fear.
Not that I am not willing to do it. I would drop anything and everything for him. When it comes time, I will be his sole care giver. I will do so without even looking back. That won't even cross my mind. I know it may seem unrealistic, but taking care of my brother has been in my plans since I was a young girl. I've always had the idea to have him live with me for a year, so he can get out of the house, give my mom a break, and he can kind of live an "adult lifestyle." I have made my mind up about this matter and nothing and no one will stand in my way.
However, I wonder to myself as I get older, as my brother gets older, as this time together gets closer -- will I be able to do it? Yes, I grew up with Sammy and was a huge part of his care giving. But at the end of the day, it was my mom doing it all. She is the one who provides for him, dresses him, takes off for any appointments, picks him up from school early if he's sick, signs all of the legal documents, deals with the things he accidentally destroys, cleans up his messes, etc. Yes, I've helped -- but I'm still his sister and I get to go back to my house in Baltimore. My mom lives it.
Even though my mom would never force this plan on me, I want to do it. I have been planning my life around this. I want to develop a program that Sammy will be able to attend while I'm working and come home with me at night. This is what I'm working for. But I don't want to ever resent him. I don't want to feel like anything was taken from me. Will I be living like a normal young woman at whatever age this happens? Will this change things for me and my future family? Will anyone even be willing to take this on? A joke was made at a recent Sibling Panel that our brothers and sisters with Autism are our "boyfriend filter." Another girl made the point that it must be a pretty good filter because she's 33 and still single. I would never want to be with anyone who cannot accept my brother -- but it is a lot to ask, "Hey, I know we've only been hanging out a little while but for this to go anywhere at all, just FYI, my brother with Autism will be moving in with me permanently eventually."
As I'm writing this, I feel like this sounds like, "poor me" or that I don't want to take care of my brother. I hope it doesn't come across like that at all because there is no way that is how I feel. I'm afraid I won't be able to do it. Will I make Sammy happy like my mom can? Will I be able to provide for him appropriately as we both get older? Will I accomplish what I want to accomplish for him? This is the most exciting part of my life as I finish school, accomplish my goals, create my program, experience new people/ideas, and get closer to my main dream -- but what if it doesn't measure up to what I've built up in my head? Sammy deserves the best, and I want to give him that.
Also... on a completely different note, when my brother was first undergoing at-home treatments/therapies, my mom contacted Dickinson College in hopes that some of the Psychology students would want to help run his program by working with him. The wonderful, Jen Krom, not only volunteered but changed my brother's life. She has become an amazing inspiration and one of my top role models. I cannot thank her enough for what she has done for my brother and for what she is doing for individuals on the Autism spectrum. Please visit her website.
I have a wonderful video to show with you all! One of our very special friends, Alex Arp, made this amazing video for Sammy and his track race. Please check it out! A big thank you to the Arp family and St. Patrick track team for making this possible, it still brings tears to my eyes!
I don't think I can say it enough, but I am thankful for all of the people Autism has brought into my life. Not only have I met an amazing brother and learned endless lessons from him -- I have learned what it means to be truly there for someone and what total love and support means. Our friends and family show us this everyday.
I wish the world was more aware of Autism year round. I mean it's nice that there is a whole month dedicated to Autism Awareness, but why should it stop there? Just because it's May now, doesn't mean that Autism goes away. It's still here - it's still a big deal - it still affects tons of families/individuals.
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.