So much of our lives is flooded with what someone thinks of us. If its not the petty cool and uncool game we all played in high school, its what did that employer think of me in that interview? We are all that kid we were in high school, sitting at the lunch table looking around at everybody else laughing or glaring. Is he laughing at what I’m wearing? Did she tell him I like him? Does she really like me? Why aren’t they sitting with me today?
They say high school is the worst and best time of your life. But, we never leave high school… Literally, the only thing that changes is bills. I still find myself questioning if my co-worker really means they like my outfit? I still find myself questioning if my friends are keeping my secrets? I still find myself questioning if he’ll ever really like me, or is he just using me?
Unconsciously or not. Regardless if we think we don’t care what other people think. We all have to admit – out loud or just in our heads – we care to some degree. So, I start to wonder, what would it be like to be free of that thought? I sometimes think (and hope) Sammy is free of these thoughts. Could you imagine being so different and struggling every day and then having to feel like everyone is looking at you like you are wearing the most ridiculous outfit or everyone is snickering about what you just did? Enough people already make comments, but to forever be trapped in that endless questioning? On top of everything else he’s got going on.
I hope he’s free of that, and I’m envious if he is.
But then I start to think – isn’t that life? We may claim it’s only apart of high school but really its everyday life. A job interview, a potential mate, a new friend, a landlord, a loan agency, etc. Is it right to hope he is free of that thought? That’s a thought that we all go through, constantly. It’s what makes us humans. It’s what makes us think and feel. It’s what makes us change our behavior.
I’m not saying its right to change the way we act depending on who we are around. But we do. Unconsciously or consciously. I absolutely see this change in my brother, but not because (to my knowledge) he is worried about what they are thinking about him. It just seems to be what he thinks of you and his behavior shows it.
One thing Sammy, Jack, and I have in common is that if we don’t like you or value you – for whatever reason that may be – we don’t give you a second look. Which is something I love, because it shows one quality that all of us have in common as siblings. Regardless of female vs. male or Autism vs. not Autism, we all have that same trait. Which I love.
But is it because Sammy is free of that heart wrenching thought of what everyone thinks of him? Or is it because that’s how he feels and doesn’t know how to “fake it?” And should I be happy he is free of that thought or sad he doesn’t experience an everyday human feeling?
About two weeks ago, Sammy came for a visit. My mom was visiting her friend and we decided to see how he would do overnight somewhere other than his home. We didn't realize until half way through his stay that this was really the first time he had been away from home without my mom.
Typical Sammy wanted nothing to do with any of the cool things I had planned... I thought I'd take him swimming or to the aquarium or to dinner but every time I tried to guide him out of my house he would redirect me to continue his routine he had built within the first few minutes of being here.
He walked up my steps, all the way to my bed, turned around and turned on/off the light a few times, walked down stairs and would walk all the way to the back of my house and turn on/off those lights a few times. He did this over and over. And over. The entire night - he did not even sleep! But seriously, he did not sleep a single minute. I was constantly waking up throughout the night to a light being turned on and shined in my face or just because I was on edge and worried about what he could possibly get into.
Im sure he was like "what the hell?" He had only been to my house once and this was definitely out of his norm. He's used to chilling out in his room on his bed with all of his toys. Here, I had an air mattress for him which he didn't seem like he wanted anything to do with other than to stack all of the pillows and blankets I own on top of it.
On one hand, I was so proud of him for being super calm and adaptive to his new atmosphere for 14 hours but then I felt so bad as well. He had no way of telling me that he missed mom or wanted to go home. Even with his iPad, the most he can ask for is my car or his room - but he so rarely uses those items, does he even know that they're there? Or what they mean?
It was absolutely clear that he was somewhat nervous or stressed with the change considering the fact that he walked the same route for 14 hours straight. The kid never really sits still but when he is walking, there is something usually ritualistic about it. But then I get to thinking - was he just pacing? A "typical, normal" behavior that most of us do when we are lost in thought or stressed? Was this Autism or just a part of being human? The only thing different from him pacing and me pacing when I'm stressed is the fact that he did it for 14 hours straight without sleeping.
Things like this show me a tiny little window that I can peer into and see Sammy in the same world as me. We are doing something so little alike that everyone does. The bridge between me and Autism isn't that big and tough to cross. Why can't we just cross it? But at the same time, am I just looking for ANYTHING? Is he even pacing or is he just enjoying this activity? And even though he might be showing me he's stressed through his pacing, it kills me that he still can't communicate that he wants to go home - if that is even what he wanted.
As Autism Awareness month ends, I realize how much time has passed since my last post. I started to tell myself that work had gotten too crazy, that I haven't had enough time, things with Sammy are going smoothly, etc. and that was the reason for my lack of writing. However, the more and more I thought about it and reviewed my last post. It became clear to me.
My last post was about the guardianship verdict. I cringe at the thought of that day. Even though it wasn't a terrible verdict, it wasn't the one I wanted. It wasn't the one any of us wanted, really. Something I had worked so hard for all of these years came down to one day and the outcome wasn't what I worked for. And what gets to me is that this wasn't something I resented or sweat over because the work needed to be done. It was something I truly wanted to do. It was something that came natural to me. It was something that I just knew deep down that I would do it. Being Sammy's guardian, caretaker, whatever you want to call it isn't work to me. It is an honor.
Which is why I think this issue is so bothersome to me. Others may think taking over Sammy is work. I'll agree, it is work. Definitely not work many other 24 year olds would voluntarily take on. My mom goes through a lot raising him all on her own and there are certainly harder days. However, being Sammy's guardian isn't work when it is something I wanted more than anything in the world.
I want to make sure he gets what he deserves if anything happens to my mom. I want to make sure I can give a professional opinion for him based on my own job experiences. I don't want my brother to ever get screwed. I don't want him to be neglected. Or end up in anything or with anyone that is less than the best.
It is times like these that I wonder, why do people work so hard? Why do they put their blood, sweat, and tears into something? Does it ever really work out? Do they ever really achieve their goal? When people are good people - do they ever really get rewarded for it? Don't get me wrong, I wasn't doing this for the pat on the back. I was doing this because he is my brother. Because I wanted to. But even though I have enjoyed all of my experiences - I could have done nothing and gotten the same verdict. Just like, my mom has done everything and now has to share the same title with someone who has done little to nothing in comparison to her.
So, I started to realize that maybe writing became something that didn't matter as much to me anymore. Maybe it wasn't worth it. Maybe I wasn't making the impact or awareness that I was hoping for. I'm still as involved as I was before the hearing. I still set all of my career goals around Sammy. I just don't write about any of it. It was the sole thing that was used in court to show my dedication to Sammy. And the verdict kind of showed the opposite of the dedication I have. I don't need someone to measure my efforts or rate them - all I want is to be a good sister.
What is the biggest moment in your life? Was it your graduation? Was it your wedding? Your child being born? Even if it hasn't happened yet, I'm sure you already know what the biggest moment in your life is going to be. Or at least you have an idea.
I already had mine. In the future, I might get married, get a promotion, have babies, watch my child go to prom, etc. But, I know that none of those things compare to the day I already had.
Sammy's guardianship hearing was by far the most important day of my life. I have been planning for it since I was old enough to look into the future. My brother would eventually live with me. Not because it is my responsibility. Because I want him to. There is no way I would ever let him waste away in some sort of "home."
I have dedicated my entire life to my brother and I am happy I have. However, the process for guardianship was intense and emotionally draining. His court appointed lawyer questioned my intentions. Which, on one hand, I was so happy that this complete stranger was looking out for my brother. However, even though it was his job and I totally understood, I came away from the conversation questioning myself. Wait, do I do enough? Should I do more?
Giving testimony and "proving" my dedication to my brother was unbelievably hard but something I would do over as many times as I needed to. I would go to the ends of the earth for my brother.
My future is Sammy. And that will not change even though the judge ruled that I was only appointed guardian if my mom or his dad dies.
This means that I am second in line. I am devastated. Something I have been working towards my whole life and I just got "2nd place." I have dedicated my entire life to my brother, as well as my mom has, and I'm not considered an "equal" guardian as her. The way I see it, I'm considered less than his dad. How does that make sense? I take off work, miss classes, travel two hours, etc. to make it to as many appointments, IEPs, take Sammy out in the community, etc. as I can. I'm not his parent and I do these things. Being "2nd place," makes me feel like I am less than what I am to Sammy. Or less than what Sammy is to me.
I usually don't like to shine light on the media that dislike or disapprove of when it comes to Autism. Because by saying something, I'm giving them what they want. I'm giving the attention. However, after this week, my feelings have never been stronger and I just had to share.
I am not really a Facebook person other than to share my blog posts, but more recently I have been reading some of the articles others have posted or are advertised, especially if they have something to do with Autism. I started with Sesame Street's new "muppet" with Autism. Julia. I can't stand the thought of her.
Honestly, I really tried to go into it with a positive outlook. I wanted my response to be, "Wow this is great for awareness" However, the more I "got to know" Julia, the more I couldn't stand it. Props to Sesame Street for the good old college try, but you didn't do to well. For one, Julia is a girl. Autism affects 1 in 42 boys. They are 4 times more likely to have Autism than girls. So, sorry Sesame Street, but this isn't an accurate or relatable muppet which based on all the articles, "is what they're trying to achieve." On one hand, I saw people's comments about having a female Autistic is rare so it makes it extra special... however, I started to think if we are going to start throwing words like rare around with Autism, isn't that going to be misunderstand? Instead of knowing that 1 in 68 children are affected by Autism, you see rare. So untrue.
In addition to the story of Julia's Autism being told from only the point of view of Elmo, which infuriating me. The majority of people with Autism cannot speak so why not give her a voice? Let her speak for herself! Let her tell everyone what Autism is FROM AN AUTISM POINT OF VIEW. The more I learned about Julia, the more I realized she was just a media ploy. She isn't even a real muppet. She isn't a puppet. She is a story book, in animated form. Making her "not real." A lot of people with Autism are seen as "not a real person" and are pushed to the back of the crowds. So, by what they're doing with Julia is just like what they do in real life. So, Sesame Street - I guess it is a little relatable. Their whole goal was to help parents, individuals with Autism, and help others understand. However, on their website there is nothing on there for individuals with Autism! What is even the point? PLEASE read this individual's point of view on Julia, the real Autism point of view.
To top it all off, this article was posted on my Facebook feed. I have had it with the vaccine gossip so I won't even comment on that. What astonished me is the statement where it says Autism attacks the brains of those depending on their religious affiliation. Are you kidding me?????? The ignorance of this article and the people who believe it baffles me.
Things like these aren't helping people with Autism. They're hurting them.
On the day of Sammy's 18th birthday, I have decided to come out of my hole and finally post a long awaited post. The summer was busy with PALS and I have been writing a lot for magazines. I have a long list of blog post ideas but I just haven't had the time.
As I have begun my new job at Kennedy Krieger Institute, I realize more and more the constant struggle I battle between my selves inside my head. On one hand, I am a sibling, I am a family member. I see that side. I see the side of what the parents might be thinking. I want to interact with patients and other individuals with special needs like I would with my brother. That comes natural. I want to take care of them and make them feel safe. I want them to have fun and be happy.
However, I also see my "therapeutic" side come in where I am stern and push for results. I push my brother, or anyone I work with to do their best, to be independent. Because I know they can do it. I don't expect nothing, but I don't expect something unrealistic. I am constantly battling with the fact that I know they can put their shoes on all by themselves. I don't mind waiting on them to do it. But, I also want to be their caretaker and do it for them. Not to take away their sense of independence or minimize their skills, but because I want them to feel at home, I want them to be comfortable.
When I talk with other people in my career path, I constantly hear the words, "Well, if the mom would just listen to me in regards to treatment..." I get that. It's so frustrating to work with an individual in any setting, see them progress, and then go home and lose it or just not use it because they can get away with it. Not that any parent or family does it on purpose, but its because, that child is 110% the therapist's responsibility for "x" amount of hours and it is their #1 focus to treat them. But when they go home, their parents have bills, have meals to cook, have other children, have jobs, etc. Although their child's well-being is 110% or more their priority, there simply isn't enough time or resources for a parent to follow protocol 24/7. In every setting I've ever worked in, we are told, at the end of the day, these kids go home to their families. How is it possible to balance productive supports, lessons, treatments, etc. if they may not be able to be followed at home? Any family would do anything for their individual with Autism, but life gets in the way. Autism may be "our way of life." But it isn't the only part of our lives.
I am constantly battling when I am working, volunteering, or with Sammy. Should I do this because I am a sibling? Should I do this because this is my career? Am I "therapying" Sammy too much at home? Am I being too "family" at work? Don't take your work home. But, I do because this is my life. Where is the line drawn? I mean there is a line, but there is also a spot where I know my expectations for my brother... where does that place me in the workplace? At home?
During Camp PALS Princeton closing ceremonies, a fellow friend gave one of the most amazing speeches I have ever heard and I wanted to share it on my blog. Not only is this great human a PALS counselor, but he is also a sibling to an incredible older brother with Down Syndrome. I couldn't think of better words to describe the experience...
"I'd like to take a quick moment to thank all of the directors, counselors and campers for a truly unforgettable week. Moreover Id like to thank the parents for sharing their amazing children with us all for the week. Everyone involved with this camp is truly blessed beyond measure to share and spend life changing moments with your sons and daughters and family members. It is a true testament to your strength, perseverance and parenting the fact that Camp Pals is such an incredible organization.
There is a saying in the Down syndrome community that states "we are more alike than different". This camp is a perfect display of the ideology that validates such a statement. For a week we have all been lucky enough to connect, interact and grow with your beautiful children. We are all so alike in the sense that, as a collective camp we are simply 40 college age adults anxious and apprehensive for an experience away from home. By the same token, we are also individuals defining who we are as persons by fulfilling our lives with people who may look a little different than us, who made need different supports than us but who live and love in an equally genuine and compassionate manner.
I am forever indebted to the people seated around you. For I have been able to share this week with my brother, Owen. Together we make up a family that is blessed with an eldest brother, an individual with Down syndrome. To be surrounded by a community so inclusive, so overly welcoming, and so undeniably accepting of young adults with Down syndrome, is to be around a group of people that both refreshes and reminds me of the memory of the home I was raised in.
To enumerate, as I observed the scenes during a staple of camp festivities, karaoke night. I saw the proud and overjoyed expressions of the campers singing their hearts out to the song of their choosing. Such expressions were complemented by their coinciding counselors faces. Faces glowing with love, respect, and awe as the campers of camp pals brought a bit of the nirvana from their daily lives to the front of the stage we gathered around.
There is no place in the world like Camp Pals and with camp pals in it, the world is a better place. Thanks again and a big shoutout to my camper Alex who reminded me why this week is the best greatest of all 52 weeks of the year."
You have five minutes to leave if theres any possible way you are going to make it on time. You slip on your shoes, grab your jacket, your hands are full of bags and papers, Sammy's iPad under one arm, and you walk in to get him...
The once clean outfit that you had dressed him in an hour earlier to leave the house is soaked. There is a puddle on the floor. His entire bed is wet with urine and he smells like a port-a-potty. There's no getting out of the house on time.
Everything is put on hold. Sammy must be stripped - sometimes bathed - and redressed. The bed has to be unmade and washed. The floor needs to be mopped. The room needs to be aired out. And after all of this, you probably want another shower and a change of clothes.
And people wonder why my mom is always late. This is an every day occurrence - changing the sheets and redressing Sammy. Multiple times a day. But can you imagine how frustrating it can be if you get yourself and everyone else ready to go - and then everything falls apart in the last two minutes?
You were literally walking out the door and all of the efforts you have put into your departure during the past hour is now ruined. Go to jail, do not pass go, do not collect $200. Game over.
Today, when I was walking on campus, I suddenly started to hear someone singly...and not well. My first thought was "Are you kidding me?" When I looked up to see who it was, it only took a moment to realize he probably had Aspergers.
If someone like me is completely aware of Autism and still had negative thoughts, can you imagine what others were thinking? No one said anything, no one made fun of him... but I'm sure most people were thinking what I was before I realized. The difference is, once I saw him, I knew something was going on. Did he look different? No. Did he have a big Autism sticker on his head? No. So, just because I'm used to what its like and can see it in mannerisms and other things, that doesn't mean other people can.
Most people probably had no idea he had Aspergers. Most people were probably disgusted or embarrassed for him. Why? It's out of the ordinary - it's not what "socially acceptable" to sing along to your iPod loudly in the middle of a public place. That's the problem - no one understands what Autism is, or other disabilities. They expect things from everyone around them and anyone who doesn't abide by this social rules, is weird.
This guy could love singing. He could have been celebrating a good test grade. This could just be a way for him to recollect himself and decrease stress. We don't know! We all do things differently. Who are we to judge? And even if we don't judge, this is why we need awareness. For people to be able to hear this kind of singing, to look up, and realize. Not so much that it's okay for him to sing out loud and be out of the ordinary because he has a disability, but because everyone has a right to do so.
What's sad is that people are so unaware of Autism, they don't understand it, so things like this are "wrong" because of our social norms. He could've been made fun of - luckily he wasn't, but no one should sing their heart out and be scared to because they may get picked on. If everyone just had a little understanding, maybe we would be less likely to hurt others, or expect things from strangers that we consider "normal." There is no normal.
Can you measure passion? What is more important - passion or dedication? How can you measure either of those?
I'm not sure that there is an exact measurable amount that equals the ultimate passion or dedication. However, the push people have towards something is what speaks to the level of passion or dedication. Passion is the person who paces in their apartment for an hour over a decision that was made. Not so much a decision that directly impacts them - but a decision that impacts what they care about. Passion is the blood, sweat, and tears that go into planning an event. Not for the recognition, but for the cause. Passion isn't about your title or level of ownership over something - its the people who lay awake at night trying to find a solution or decide what if fair for everyone, not just what looks good.
I just got off the phone with a dear friend of mine, who has no direct link to Autism himself, just has dedicated the majority of his life to advocating, helping, and spreading awareness. He is probably one of the most passionate and dedicated person I have met within the Autism community - knowing him has been life changing for me, let alone for all of the individuals he helps. He is currently planning his own event for spreading awareness for Autism on his college campus. So, let's just stop - wow, you rock, Ryan. This kind of stuff gives me hope, knowing that there are people like Ryan out there for people like my brother. The fact that you took this upon yourself to just do it because you felt it needed to be done, not because it was a requirement for some class or club. Anyways, he is solely doing this to spread awareness and help people learn what Autism is - one of the most needed things in this community. However, he is getting pressure from other clubs for why their name isn't on the event.
Why is it about who gets their name on the event? Why is it all about the business and advertisements? Why isn't it just about the cause? Why isn't it about supporting each other toward a common goal? There is already enough negativity and ignorance out there - why are the people trying to help also participating in it? Why aren't we just moving forward and coming together to spread awareness for Autism? Why does it have to be about money or the credit - why can't we just do it because its the right thing to do?
How do we expect people to want to try and understand Autism when we act like this? I don't care how much money is donated to Autism Speaks or any other organization for Autism - I'd be happier knowing that every single person in the world knows what Autism is, knows these individuals can't help some of their actions, and is more understanding when they see such a person out at the store or restaurant.
What is the point of a cure? Of research? Yeah, it's great... but what does it really do for the people suffering from Autism right now? Great! You solved the puzzle - you found the cure for Autism - in 3016. What does that do for my brother now? That money could've helped open an after-21 program or give therapy to those who can't afford it.
It's not about the credit. It's not about the donations. It's not about the cure. It's about the person.
Open up a Google search. Type in Autism. Type in Down syndrome. Type in Cancer. Type in brain injury. Millions of results pop up. Type in a few more words next to the disorder or disease or syndrome and you'll find the exact answer you need.
Recently, I starting researching Landau Kleffner Syndrome. Another thing that my brother is diagnosed with - in fact, it is the first thing he was diagnosed with. What comes up? Barely anything.
Finding a local place to intern was impossible. Finding information about it much more than it is rare and incurable was impossible. After hours of researching - I can honestly say the only thing I know about this topic is what I've witnessed with my brother.
I want to learn more. I want to see what people are doing about it now - after the childhood has passed. I often struggle with how can there be one or two main ways to help people with Autism? Every single person is completely different within that diagnosis. So, what can they do for someone who is diagnosed with Autism and LKS? There so little known about LKS, what works and what doesn't.
Many people are wrongfully diagnosed with Autism when they have LKS. This has me wonder again - if so many are wrongfully diagnosed, are the ways that have been deemed "successful" within Autism really successful - or did they just get lucky? And vice versa - is there really little to no intervention for individuals with LKS - or have they just not put all the pieces together?
LKS is an epileptic disorder. Seeing what a seizure does to my brother - basically making him restart his brain in some ways. Sometimes, he loses entire ideas that he is learned. This is insanely scary. To think, a 30 second event within your body can ruin parts of your brain, set you back to square one. If this goes untreated, one seizure could ruin so much. Imagine if you are constantly having them - especially so shortly after being born? What does that do to development?
I know that there are so many great ways to help ease the symptoms of Autism. However, how can we help those with Autism that aren't gaining from the already known methods? And what if LKS was missed with these individuals? What if there was a better treatment for those who have Autism and LKS? Even though Autism is so closely related to LKS... What if the method to treating Autism (whether they have LKS and Autism or just LKS) is actually being counter productive? What if it's making it worse? Or sending individuals back to step one?
Over the weekend, I went to see "The Curious Incident of the Dog in the Nighttime" on Broadway. I was a little skeptical about how it would turn out, but I definitely wanted to see it for myself. I had heard amazing reviews and even a fellow friend recommended I go see it. So I did.
I read, I write, I watch a lot of movies, I go to plays and musicals and ballets. The movies, the TV shows, etc. are never as good as the book. But let me tell you, this play was definitely better than the book.
I read the book awhile ago so I remember the general idea of it and certain parts, but I do recall loving it. But not because of its writing, just because it was interesting and it hit home to me. I could understand the meaning of it because I have a brother with Autism. However, if anyone else read it from an outsider's point of view, I don't know if they could truly "get it."
Seeing the play was like living life through someone with Autism's eyes. That was extraordinary. Seeing the play that way made it really easy for people who may not know a lot about Autism to understand what they go through during different situations and sensations. It showed you little aspects of a person with Autism's life that many of us probably look right over or don't even consider a tremendous struggle.
As a sister, it is relieving to know that there are great things like this as entertainment that can also show and help people understand the world of Autism a little better. Without a doubt, the play was outstanding and one of my most cherished memories of all time.
Find out more about it and see it for yourself here.
I am super excited to announce that I had another article published! This one was printed in the Exceptional Parent (April 2015) magazine. My article was a part of the Autism Awareness month section. Please read my article below. And definitely check out The Next Step Programs shout out. ;)
Recently, I was interviewed for the Sibs Share section in the online magazine, Parenting Special Needs. I have screen shotted the article (pg. 21) for all of you to read. But, please view the entire magazine here. I am so honored that Sammy and I were able to make the cut!
In a sort of continued post from "Deal breaker or dream come true," I decided to talk to a bunch of siblings and what they think for the future of their brother or sister with special needs.
Not that I ever want to find that person, but there are definitely siblings out there that probably can't even imagine taking in their brother or sister when they get older. It isn't a thought that crosses their mind, or an idea that they even want to consider.
However, I am so curious about those who WOULD NOT take in their brother or sister if they got older and were unable to live with the parents or on their own? Not because I feel like I should change their minds but because I am so curious about their thoughts and feelings regarding the topic. Mainly because everyone I spoke to spoke so strongly about wanting their siblings to live with them.
I have realized that over the years I've spoken to other siblings about my plans to take Sammy in and they seemed sort of stand offish. Is this because it is something they will never consider or because it is a touchy subject? I recently spoke to a mother who stated that her daughter told her once she was ready to give her brother back -- not that I blame her, especially being young and not understanding the disability completely -- but when it came down to it, are there more siblings out there that wouldn't take in their brother or sister? Would they sacrifice a relationship with someone they considered marrying because he/she wasn't willing to potentially become a guardian to the sibling with special needs?
One sibling mentioned that she always planned for it in the back of her head but was optimistic that there will be way more options in the future for her siblings and that they wouldn't need to. She told me that.
Another sibling told me that, like me, had already spoken to her parents about it and put it into the process of transition for her sibling and that it would always be what she expected.
Finally, a sibling said that he would definitely take his siblings in but their goal is to have them living independently. And if that couldn't happen, they would live with their parents. He stated, "my parents would never make me take them in, but I would if I needed to." My mom says this too, that she will take care of Sammy until she can't. And even then, it isn't up to me to take him in. But I will. I want to.
For a lot of these siblings, their brothers or sisters will live independently and that makes me so happy, but at the same time, so sad. Will Sammy? And when most siblings could stay with their parents into their late ages, will Sammy be able to? He can be aggressive and he is much stronger (and unaware of the damage he can do) than my mom, Jack, or me.
I am thankful for all of these siblings and that they are willing to take in their brother or sister. I am thankful to them because I know that I will be able to go through it with them, whenever it does some time that Sammy and their siblings move in with all of us. Not that any of our parents EXPECT us to do this, isn't it funny that we all kind of expect and plan for it?
PALS has become an intricate part of my life. My friends from there are very important to me and it takes up a lot of my time. Over New Years, Jack and I spent our time with PALS as counselors. It was an amazing experience and I brought in the New Year just like I wanted to - with fun, friends, and lots of love.
Sammy was home with a babysitter. When I think about my fun time at PALS, I start to feel guilty. Without Autism, Sammy probably would have been joining Jack and me as counselors at PALS over the New Year. Not only that, a regular 17 year old isn't home with a babysitter - he probably isn't even home on New Years Eve! He's either getting in to trouble with his friends or doing some kind of cool activity he had been planning for the holiday.
PALS is an incredible organization and gave the opportunity for friends to hang out regardless of having Down Syndrome on New Years - in a very "typical" type of way! Not only do these opportunities not exist for Sammy, but does he really even get the point of New Years? Does he know what he's missing? Does he even care? Is New Years over done and played out - so Sammy just knows what we all don't?
I start thinking, should I have stayed home for NYE? I had a great time and loved every second of my holiday. But, would hanging out with me make it more "normal" for Sammy? Would it make it less obvious that he is not the typical 17 year old on New Years Eve? Would it have been fun for him - or would he be embarrassed to be sitting at home with his 23 year old sister on New Years Eve watching the ball drop on TV.
Although Jack and I cannot live our lives in fear of Sammy missing out. We can't stay inside forever just because Sammy might not be capable of going to events... but how can we be true to our beliefs of "inclusion" and Sammy deserves to be in the community, if we don't do it ourselves? Are we letting Sammy down? Not saying that Jack or I did anything malicious by enjoying our New Years - but I can't help feeling bad, I can't help wishing he was there at midnight, I can't help craving the start of something like PALS for people like Sammy. I want Sammy to be able to enjoy the ball drop, the new year, just like everyone else - younger or older. I want him to make resolutions, have a New Years kiss, toast with champagne!
Even if he didn't have all of this, I would kill for Sammy to get a "Happy New Years" text from someone other than a family member - or to even just have a phone.
I was recently with my friends Whitney and David. For those of you who don't know, these are two of my closest friends from PALS. David has a sibling with Down Syndrome and Whitney is just a dedicated PALS volunteer. Basically, their love story is the cutest. Anyways, we got to talking about the intimidation of having a child/sibling with a disability...
I thought about my mom and about how hard it must be - to be divorced and have a child with a disability. Not only is it hard to find a person once you are divorced (and all that baggage), but to find someone who is okay and on board with caring for a child with special needs for the rest of their lives makes it 10x harder. Although these people do exist, who is really willing to opt into this responsibility? Not saying that Sammy isn't a blessing - I always want him to be a part of my life- but if he wasn't Autistic, would I want to be with someone who had an Autistic brother? Please don't think thats harsh - even though it sounds like it - but seriously, Sammy made me the accepting person that I am, would I really be the same without him?
Whoever I end up with - they will have to be okay with Sammy. Not just for the reasons that he is my brother and a main part of my life. They need to be accepting and understanding. But also, because Sammy will be living with me one day - they have to be on board with that. Otherwise, game over. Deal breaker.
My friend Whitney said, "it isn't as intimidating as you guys think." This makes me love her a million times more than I already do - that she genuinely always wanted to be apart of the disability community. But not everyone is like her! Even though there are people like her, I've even met them through PALS, but how many are truly willing to dedicate their life to something like this? She is an extremely brave and inspirational person for feeling this way and dedicating her life in many ways to helping individuals with special needs. People my age are barely able to commit to one, and only one person. I don't blame them - that's a crazy thought. How can you be expected to decide on spending your life with one person or the rest of your life - let alone taking in their severely Autistic brother later on in life in addition to your own kids, house, job?
*Shoutout to those who are willing to- Tony, Whitney, Steve, Jessie, Lisa <3
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!
I was recently speaking with a mother of a child with Autism and we started discussing what its like the be a sibling. She told me how her daughter really looks up to the people who come in and out of the house for her brother. Then she told me something her daughter told me that really stuck to me... She said, one day she to me, "Everyone who rings the doorbell is for my brother, why not me?"
This got me thinking. I was the same way. I clung to people who worked with my brother. They were my older sisters/brothers. I looked up to them. I wanted to be them. They were my role models. I copied them, and tried to dress like them. I died for them to notice me. I looked forward to talking to them.
This also made me realize why I usually cling to friends I meet in the Autism community, co-workers or fellow volunteers. Most people would leave their work-friends at work, but I can never do that. My first friends were those therapists that worked with my brother, because they were the first people to show me something that I was going to love: therapy, helping people with Autism, making a difference for my brother. Who were your first friends? Probably people your age, who wanted to play house, video games, or ride bikes.
Being a sibling isn't just about loving your brother or sister no matter what their disability. It isn't even about dedicating your life to a career helping people with disability. But sometimes it is. It just happens, whether you plan it or not.
Sammy was a life changer. All of a sudden I had a baby brother who got 10x more the expected "new baby" attention. And as I was growing into the age of wanting to make friends, was when therapists were in and out of our house. Of course I wondered, why him? Why not me? Obviously I understand why now, but when you're little... you don't completely get it. Even if you know that these people are here to help your brother and you want your brother to get better.
I have always wanted to start a Sibling Support Group for siblings of Autism, but after talking to that mother - I know that I am ready to lead one and this has become my new #1 project in my life. I know that I am way better off with Sammy in my life and I know I should appreciate my life way more because of the difficulties he goes through everyday. However, when the whole process starts - its tough to see that. It's tough not to resent. Plus, isn't it nice to have people to vent to who actually 110% get it?
Do you ever hate a certain part of your life? As much as you try to be appreciative... or see the bright side... or be happy for the good parts... you still resent things?
I love Sammy. I love what he has done for my life. And as much as it pains me to put into print, I don't think I love Autism - I think I hate it. When I work with clients, or I see Sammy - I hate it. The things they miss out on. The things they struggle with everyday. Is it fair? No!
I don't hate Sammy. I don't hate what he has done to my life. In fact, I appreciate it. I don't hate my clients. That's not what I mean. What I mean, is that I hate what Autism has done to their lives.
I am resigning from my job. Sammy has no idea what that means. I just aced a quiz. Sammy has no idea what that feels like. My boyfriend broke up with me. Sammy hasn't ever had a girlfriend. Jack is dealing with the dramatics of high school. Sammy doesn't even go to high school. Jack just got his first job. Will Sammy ever get a job? I need a job with benefits. My clients are struggling to get volunteer jobs (will Sammy?). I want to pursue a further education. My clients (and Sammy) have barely mastered the basics. I live on my own. My clients still live with their parents at age 21 and older (what will Sammy be doing?)
And even if we go with the selfish side - I want to talk to my brother, Sammy, about my latest problems. I want to brag to him about my accomplishments. I want to fight with him about stupid stuff. I want to take him shopping and pick out "cool clothes." I want him to ask me for girl advice. I want him to visit me for a weekend in Baltimore like Jack does. As much as I try to make some of these things happen for Sammy and me - Autism always gets in the way some way or another.
As much as Autism brings into my life, I hate what it has taken away from my brother.
I hate what it has taken from me.
What I am about to write about may make me seem like I am a snob, a know-it-all, ungrateful, or even bratty. But please know, that is absolutely not it. I do not want to offend anyone and for it to come across that way because I do not think I know it all. I do not think I have nothing more to learn. It's just how I feel as a sibling and from my own experiences, so please do not take it the wrong way.
I've realized I need to put those kinds of things out there after many events, but especially one in particular that happened recently. I do have a strong feeling about the fact that I believe that since I lived Autism 24/7 for 17 years, I do have one up on even the most intelligent therapists and doctors. Don't get me wrong, these people would school me in the terminology, identifying anatomy, creating top notch behavior or medical plans. But at the end of the day, unless you have lived with Sammy Talhelm - you know nothing about Autism. And by that I mean, you may know about Autism from your textbooks or experiences. You may even know someone with Autism. But that is all you know. You may even know a lot about Sammy from your interactions! But, you don't know ALL... because every single person with Autism is completely different. Sammy's way of life or exact characteristics may change every single day. With that said, I don't even know absolutely everything.
Sammy was diagnosed when I was in 2nd grade. That means, I have been the therapies, doctor appointments, trainings, etc. for all 17 years of his life. I was included in the extensive ABA training we had to for our at-home therapists when I was just in 3rd grade. When I say I know ABA and other therapies back and forth, up and down; I'm not trying to sound like I can't learn anything from anyone else. I want to know more. I want to learn as much as I can. So I can help him. I'm just saying that with Autism, and having a sibling with Autism, my life is ABA 24/7.
I know there are always more things to learn. I know there are always new things up and coming. I know there are always going to be more ways to do one things. I am always going to welcome an outsider's point of view. I am always going to appreciate the things people do, plan, and create for my brother. I am always going to read that interview, news article, or section of the textbook that has something to do with Autism. Autism is my life. ABA is how I interact with Sammy in a lot of cases. I'm not being disrespectful when I may seem bored or think I know it all. I don't. But, I'm sure families who have individuals with Down Syndrome or Cancer are sick to death of hearing the same old basics over and over when they go to a training, class, conference, etc. Think of how you feel at the beginning of classes every semester - it doesn't matter if you're in grad school, you're going to spend the first week going over the basics you learned in every 101 class. Are you an expert - no! Are you bored - yes. We may not know everything, we may know a lot about the basics of a subject we see ourselves as experts on. But here's my thing - I know about it, I know it works. Why isn't Sammy talking, using the toilet, doing everyday 17 year old things? Where is the next theory? What is the next big idea or plan?
*ABA: Applied Behavior Analysis
Please watch this, it is one of the most amazing things I have ever seen:
Sammy will be starting another year of school at the Vista School this week. For the first time in quite a few years, he will be moving onto the high school and be with an entirely new staff. Sammy has been working with the same people for years and has resided in the middle school and it is finally time for him to transfer.
On one hand, I couldn't be more excited for him. New environment, new teachers, new therapists, new peers, etc. A whole new experience for him -- will it be life changing? But on the other hand, I'm scared. What if he doesn't feel comfortable? What if we lose time because new people are trying to get to know him? What if he's not ready?
Don't get me wrong -- it's not that I don't have faith in Sammy that he will succeed. It's not even that I don't have faith in his new team. Sammy has an amazing push and stubborn will. I know that he is ready, he will do great things. I'm afraid of "the fit."
All of us fear moving on or growing up because of missing home, meeting new people, trying to fit in, etc. Not only does Sammy have to deal with these new experiences, but he has to figure out how to do everything he needs to do everyday all over again. The routine is going to be completely different. His life will be temporarily flipped upside down.
Knowing Sammy is moving to the high school is also freaking me out because it means he is one step closer to becoming 21. One step closer to graduating high school. One step closer to not having somewhere to go during the day to learn and maintain skills. One step closer to possibly living with me. I just applied to a few grad schools, which is scary enough -- but knowing my acceptance to these schools could change what Sammy does at age 21 makes it 10x more intense. His progress marks my progress -- if I'm not making progress, I am failing my brother.
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.