This is a post that I have wanted to write about for a long time. It's something I've touched on slightly and hinted at in previous posts but its time I dedicate one post strictly to it. Siblings.
Over the years, I have met many siblings of people with disabilities. Each of us is a completely different person and looks at the life in front of us totally different. You would think we would all feel the same, regardless of the disability, but I have felt closer to some siblings of a disability completely opposite of Autism... and I have felt no closeness with some siblings who are in the very same boat as me.
I have recently been working on a paper - Parenting a Child with Autism - we were able to choose any topic, as long as it had something to do with midlife development. I see the struggles my mom goes through everyday as a parent of Sammy, so that's what I decided to write about. However, while researching, I noticed how much there is available to parents. What is available for siblings? It's a huge life change for all of us. I was in kindergarten and was an only child - having a brother was so intense, let alone one that required so much attention!
This is why I have always wanted to create a sibling support group - why I created the blog. But in addition, it makes me so appreciative for some of my closest friends who view their siblings with disabilities as a blessing. Although we all have our complaints, at the end of the day, we appreciate our brothers and sisters. What our siblings are going through is a million times more difficult than what we will go through as just family members of the disability, but are we forgotten in the process? That is what a lot of siblings feel. Not only because their new sibling is getting a ton of attention, but because there is little to no support. How are we suppose to achieve acceptance and move on? Other siblings are also a lot harder to find. Unless you engross yourself in Special Olympics or activities like it, you may never meet another sibling - or you may never meet another sibling who outwardly speaks about their experience with an individual with special needs. Venting is important for every human to move on, regardless of the issue, but it isn't successful to vent to someone who doesn't truly get it. Without another sibling in your life, you may never feel completely "free." Plus, just throw all this into the normal stressors and dramas of growing up, talk about overwhelming. Not to mention, it makes you less relatable to people your age, because you are most certainly more mature and have different looks no the world.
I think the problem with the lack of support for siblings is that we think we are terrible for resenting them, and its expected that they make something out of us. We must learn from them. I do learn from my brother, every day, but I also want a life without Autism sometimes. I know that is totally harsh, but it is what we all think. It's not that we wish the individual away - we wish the struggles and annoyances of Autism were gone. It's selfish, but not only for the individual, but for us too. Sometimes, we just want a "normal" life - if normal even exists.
In addition, I have recently met a family with a child with Down Syndrome and Autism, his younger sister is so inspirational. She reminds me of myself when I was her age and her dedication to her brother is so obvious in just the few meetings I have had with the family. I am so ecstatic to attend their Sibs Shop and continue working with her, her brother, and the family. This girl is obviously going to achieve great things in the world, especially for her brother.
Please read one of my closest friend's, Chris Rahill's, PALS blog post about his sister here. I would actually like to dedicate this TOO small of blog space to him - although he may think I'm a creepy friend, I totally appreciate him. He is probably one of the only siblings I have ever been able to 100% relate to without talking about being a sibling 24/7. I don't need to directly vent about my brother and the life of Autism to him to feel better, just talking to or joking with him makes me feel better because I know that he gets it. He is going to make such an amazing impact on the world, and his siblings are so lucky to have him... as am I.
Also, please help my friend Hannah Cunliffe make a difference in Kenya. She is another amazing sibling, I am so honored to have her in my life and to have the opportunity to relate to her. Chris and Hannah are amazing older siblings and incredible individuals.
Please continue to donate to PALS Poconos, the camp I will be directing this year! I am so psyched to be apart of this program and I am so fortunate to have met many of my closest friends be brought into my life through this camp.
This weekend, I was at my director retreat for PALS Programs. For those of you who do not know, PALS is incredibly important to me. It is an organization that provides opportunities for individuals with Down Syndrome to create long lasting friendships and independence skills. For 2015, I will be the director PALS Poconos with my friends Annie and Ryan! I am so excited!
At our retreat we had many discussions but one that really stuck out to me was "Cuteness Porn" which was an article about the usage of "That's so cute!" when looking at pictures of things involving individuals with Down Sydrome. Of course (which we even talked about in our discussion), this can be applied across all disabilities.
Just because someone looks happy in a photo - or even in person - does it mean they are truly happy? Regardless if they are neurotypical, Autistic, or have Down Syndrome... I know that I can put a smile on my face even if deep down I am feeling like crap. I know that one thing that makes me happy is going to be completely different from the next person. We even talked about how there are universal emotions in my psychology class. But how can you truly compare sadness and happiness for ALL people?
This got me thinking about Autism - "anti-social" is often a word used to describe individuals with Autism. What is anti-social? Being "social" to neurotypical people is giving hugs, being around people, engaging in conversation does not mean that is the meaning of the "social" universally. How do we know that neurotypicals didn't get it wrong and people with Autism got it right?
They often say that people with Autism cannot discriminate or even understand the differences between emotions... But can anyone? My friend may have a smile on his/her face and I may understand that as my friend is happy... but is he/she really? What is going on deep down?
Just because Sammy has a smile on his face doesn't mean he is happy. He is unable to communicate, how will we ever know if he is truly happy? What if a smile means something totally different to him? In addition, to outsiders looking in (who don't understand Autism or Down Syndrome completely), do they see Sammy (or others) as happy and don't realize the difficulties they go through everyday? Or do they acknowledge the difficulties, but are just recognizing the happiness? Are the recognizing the happiness to avoid the problem of limited help with their difficulties? We can't even put a secure definition on "happiness," for people with or without Autism, how can we judge others on whether or no they are judging correctly? Can we judge correctly - isn't that judging... and aren't we against judgement?
Bottum line... happiness, or any emotion, is different for every individual -- whether they have a disability or not. We cannot tell the difference between emotions on a neurotypical, so why should we have the right to distinguish the difference between emotions on someone with Autism or Down Syndrome?
In other news... please help Annie, Ryan, and I raise money for our camp and PALS Programs! We will be taking place at University of Scranton July 29th-August 4th. We plan to take our campers to the Pizza capital, Poconos, baseball game, hang out in the town of Scranton, and much more! -- please, PLEASE, PLEASEEEEEEE go here to donate!
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.