For this past month, I have had the amazing opportunity of interning with our close friend, Jen Krom. While she was in college, she worked with Sammy and then went on to dedicate her career to helping individuals with Autism. She has created her own program where she focuses on the individuals and families affected by Autism. She offers behavioral assessments and plans, individual therapy, and swim lessons. Her program is going to change lives! This makes me so incredibly happy and appreciative for Sammy. He was lucky enough not only to have Jen in his life, but it amazes me that he made such an impact on her life. It is because of Jen and people like her that Sammy makes progress and is as great as he is.
I visited her in Connecticut and was able to shadow her, go to Autism support groups, work with clients on my own, and volunteer at the camp she works for. I was given so many opportunities and shown many eye opening experiences within the Autism field that I do not always have access to. I loved being able to be hands on and take behavioral data. I met incredible people, campers and counselors, at camp where I was able to create bonds with and share my PALS experience with them.
One of the most moving experiences I think I had was going to the support group with Jen. Although it was small and simple, I have never been to a support group as a sibling of Autism. I have always dreamed of creating and running my own for siblings. I have often even looked into going to them. I know that I really enjoy sharing experiences with other families, but I had never been in a support group setting. I loved being able to share my experiences with Sammy and see what other parents were facing as their child gets older. Having the opportunity to hear from other parents gave me another way to look at how my mom may be feeling.
Jen also gave me the opportunity to shadow a friend who works at a psych hospital. I was totally moved by the environment, I have always dreamed of working with less fortunate, mental health issues, or addiction problems - but being put right into the actual setting was eye opening. It really pushes me to get out there and help within these communities as well.
In addition to all of these amazing opportunities, Jen also showed me the other side of one on one contact with clients. She started her own business, which is a dream of mine, so it was great to see that side as well. My time in Connecticut was totally life changing. Jen is going to change the world of Autism and I am so honored to have had her work with my brother and to have learned from her. She is doing incredible things for many individuals and families, and what I loved about her vision was that she is not just trying to help the client, but also provides support for the family as well. I hope that I can one day follow in her foot steps and make as an incredible impact no the Autism community as she has. Please help her keep One Piece of the Puzzle going and to continue growing by donating here.
What's worse than being trapped in your own body and not being able to get what you want to say, think, feel out? I have observed my brother, my clients, etc. "get stuck" within themselves. I don't know if its stuck in their body or within their mind but it looks excruciating. Imagine not being able to control it.
I have a client that when told to turn off the computer, he will start to do it and right before he hits, "shut down," he will yell out "I'm sorry!" and keep playing the game. It's like he wants to listen and wants to follow through but something within him is not letting him finish that last step.
Can you imagine not being able to move on until a task was completed? Not because you are devoted to completing everything before you do something else, but because you literally cannot stop to take a break, answer the phone, go eat, etc. because your body physically won't let you.
Everyday before school, my brother has to close every door on the second floor of our house before he is able to move on, go downstairs, eat breakfast, and get on the bus. If he is forced to go down without closing the doors - MELTDOWN! Or, if he realizes he didn't close them, for whatever reason, he stops what he is doing and rushes upstairs to close them. One day when I was getting him ready, he stopped dead in his tracks on his way to the bus and refused to move until I allowed him to go back inside. He ran upstairs to close my door that was slightly cracked open. How did he even know? I thought he had closed it earlier that morning!
Everyday, we get in our cars and realize that we left our bedroom light on. The majority of us will probably just go about our drive (because I'm sure we're all running late) and forget about it. What if you couldn't? What if you HAD to turn your car around and go turn off the light? I'm not talking about something like an over or curling iron - which could be detrimental if you left it on, but a light! Something so little, that you didn't want to leave on but you did. Tough luck, you move on. But what if you got stuck on that? You couldn't move past it. You couldn't follow through or concentrate on anything else until you knew it was turned off.
Could you imagine a day being ruined by leaving a light on? Could you imagine feeling so uneasy within yourself because of a light? And what sucks, is that I doubt my brother or anyone else can even stand this feeling. They would probably love to just walk out that door and forget about that stupid door that they didn't close, but deep down they are driven to turn around and go close it because if not, they will be a mess inside for the remainder of the day. Even more stuck inside themselves than they were before.
For the past years, my family and I have not been going on vacation as a whole. My mom would go on small trips by ourselves sometimes, but not even really that recently. When going on my vacation with my mom and my brothers -- we have to take a lot into consideration that most families probably do not. Where will Sammy sleep? What will we do if he doesn't want to go to bed all night? What if he has a meltdown on the beach? What if he doesn't want the food at the restaurant we go to? What if he doesn't feel like walking on the boardwalk? What if he soaks the sheets in the middle of the night? Will he break anything in the room? And on and on...
This year, we planned a vacation and struggled with the decision on whether or not to take Sammy. It pained my mom, Jack, and I to make this decision because we hate excluding him. However, is it really a vacation if my mom is on duty 24/7? If she still has to spend her time cleaning sheets and changing diapers? Is it fair to Jack and me if we have to leave in the middle of the day at the beach or during mini golf because Sammy is "not feeling it?" I know this sounds so harsh, but we did make the decision to go on vacation without him. His absence was an incredible feeling we could not avoid.
Although we felt guilty all week, is this what the life of Autism eventually comes? You can no longer go on vacation together? You have to plan separate trips? You need a babysitter for him so your parents can focus on the important parts of the other siblings' lives - graduation, confirmation, etc? Is this torture to Sammy? Sammy is definitely not a fan of sitting still and being quiet for a long period of time - so is he "getting out" of an activity that the rest of us endure whether we like it or not? Or does he feel excluded?
I think its good for families of Autism to get a break of the life once and awhile. But does normal become a drug? Not saying they dislike their sibling or son for having Autism - but do they start to crave that sense of normalcy? What I think is sad is that we even have to take a break from it -- not sad on my family's part but sad on the rest of the population's part. We have to take a break because other people are not accepting or helpful when it comes to people like Sammy. We don't leave the beach because we want to, we leave the beach because Sammy might be bugging others. We don't leave him at home during graduation ceremonies because we don't want him there, we don't want him to be too loud for other families. We don't take him out of church when he gets loud because that's what he wants, we do it so other people can hear the priest. I am a huge believer in pushing Sammy to do things whether he likes them or not -- he is a clever guy and knows how to push the limits to get out of something he does not want to do. So, the only reason we "exit" certain situations is to be kind to the surrounding people. Why aren't they showing the same graces? Why aren't they stopping the stares and thinking, "well he deserves to be here just as much as we do?"
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.
Sammy had his 6 month follow up after his brain surgery! Today he was officially cleared! We are so happy that our boy is back to himself and no longer in pain. His neurologist mentioned that he is a completely different person today than he was before the surgery. I guess his behaviors caused by the pain had become our new "normal" because his misery is obvious to us now.
I am so happy that everything healed correctly. I hope everything continues to work out for him. He has enough going on, Sammy deserves this! To think of how many things have changed in the past 6 months, I cannot believe this is finally behind him. Thank you again to everyone who stuck by us during everything and continues to do so - we could not have done it without any of you. Congratulations Sammy!
Yesterday, I had the opportunity to attend the Honestly Autism conference. There, I was surrounded by parents, siblings, therapists, teachers, social workers, etc. -- all affected by and a part of the Autism community. During the few speeches I attended, I noticed a trend. When a story was being told about an individual with Autism - the crowd would react with the same response, "awwwwww." Even I was guilty of it.
It dawned on me -- I always talk about how we need to treat people with Autism with respect or treat them like there is no "normal." Help them, but don't pity them. Does anyone like to pitied? Felt sorrow for? No. Why do we do it to individuals with Autism? Now, of course, when I'm talking to my friends about something sweet someone else said or I see a couple's new baby, I do use the "aw" response. But do I do it when my friend gets a job interview? When my friend gets asked out on a date? When my mom makes me cookies? No. Those things are unexpected but yet expected of us. I have no problem understanding that my friend got the job interview or that my friend could get a date and end up married or that my mom would be able to use the oven. But, is that what we think for people with Autism?
I will agree that it is heart wrenching when people with Autism do things like this. When they get their first kiss or make you something special. It means everything to me. But it doesn't mean they were never capable. They are human first. All humans want to be loved, want to be successful, want to be there for people they care about. I agree it is a big difference between someone with Autism getting a diploma and when I get my diploma - because their struggle and their push was much more intense than mine. But it doesn't mean they are incapable. It isn't sweet. It isn't beating the odds. It's success. It's what they deserve!
I am thankful for the little moments with my brother that not many can understand. I think we all have connections with the other person in our friendships, families, relationships but ones with Sammy are so important that it brings a whole new meaning to it. Since we don't have the verbal communication, we have to rely on music, facial expressions, body language, laughs, etc. I'm so happy for the times he and I can share a smile with each other.
I want people to be aware of the fact that the majority of people with Autism aren't just socially awkward - there are a lot more cases where individuals cannot talk, need intense interventions, are not independent, will not get a job, will not live outside their parent's house, are not toilet trained, cannot get themselves dressed, will not go to a regular school, etc. If people do not realize this, then we cannot help those who are affected by Autism.
The removal of Asperger’s from the DSM-V has created a lot of controversial arguments among the Autism community. Many believe that this was a mistake and that is taking away a part of an identity that all of the individuals with Asperger’s feel they were a part of. While others believe that this was a very good idea because Autism is a spectrum disorder, and it should be diagnosed as so, not with a specific, separate diagnosis. The people that feel part of the Asperger’s community are very upset by the removal, but the entire Autism community has been greatly affected.
In a recent study done by Donna Kite, about half of the participants voted opposed to the removal of Asperger’s from the DSM-V (Kite, 2013). Although this is just one study, seeing that the opinion was split fifty-fifty just further proves how controversial this issue is. Asperger’s is a pervasive disorder of the Autism spectrum. Those diagnosed with Asperger’s are considered “high functioning” with deficits in social areas and cognitive delay. Those with “low functioning” Autism not only have these characteristics but also have communication difficulties and repetitive behaviors (Ghaziuddin, 2010). Although the two do have characteristics that overlap, the two diagnoses are very different.
Those with Asperger’s do not meet the full criteria of the Autism diagnosis (Ghaziuddin, 2010) Therefore; this was the original reason for the separation of Asperger’s and High Functioning Autism (Planche, 2012). However since the two are so similar, it is unclear when one diagnosis should be used versus the other (Kaland, 2011). This caused the drive for the removal of Asperger’s from the DSM-V. By removing this from the DSM-V, the goal is that it will be easier to provide clear and accurate specifics for each individual case (Kite, 2013).
However, those among the Asperger’s community are very resentful towards the removal. It has in some ways, taken away the voice of those with Asperger’s (Elliman, 2011). In addition, the removal has now caused for a reevaluation of everyone previously diagnosed with Asperger’s (Planche, 2012). This is not only inconvenient but insulting to many people. Those among the Asperger’s community have a strong connection to the identity and believe it is apart of them. These individuals feel their identity is being taken away from them (Kaland, 2011). Removing Asperger’s from the DSM-V is like saying that part of these individuals does not exist.
A spectrum is a scale made up a wide range of characteristics. Autism is a spectrum disorder so each person diagnosed is placed somewhere on the scale based on their development, needs, strengths, and weaknesses. By doing this, one with Asperger’s can still be put on the scale, but can still be classified as “Autistic” without the separate diagnosis of Asperger’s. Since an individual can be placed on the Autism spectrum without the addition of the Asperger’s label, then the removal from the DSM-V is reasonable.
Although I do agree with the removal of Asperger’s from the DSM-V, I do not think it should have been completely removed. I feel very passionately about this topic since I have a brother on the Autism spectrum and have worked with many individuals across the entire spectrum of all ages. My brother would be considered to be on the very low functioning end of the spectrum. Even though the criteria of a spectrum is a wide spread of characteristics from one end to the other, the differences between someone like my brother and someone with Asperger’s, or “high functioning Autism” are extremely different. Although there are some characteristics that overlap, there are some characteristics that overlap between most disorders. When you look at someone like my brother and then someone with Asperger’s, it would seem as if the individuals had two different diagnoses. I do not think that Asperger’s should be a part of the Autism spectrum, but I do believe it should be it’s own disorder all on its own.
I love my brother and admire him for everything he goes through everyday. However, I am very jealous for him of those diagnosed with Asperger’s. My brother, Sammy, is 16 years old and cannot speak. He can address his wants and needs using an iPad program, ProLoQuo2Go, but does not understand the concept of conversation. I have no idea what he thinks about a TV show, his thoughts about people, his favorite color, etc. He has to be taught each item he may request, which takes time. I always wonder what it would be like if I was thirsty and could not get any water. I would be able to request it at least! But Sammy, cannot do this if he does not know the name of such an item, “water.” Sammy also is not toilet-trained so he is still in diapers and often has accidents on our couches or his bed. Therefore, my mom is constantly chasing him around checking his diaper and washing sheets or cushions. In addition to this, he has no concept of safety and treats things like a toddler might; throwing items, spilling things all over the floor, etc. This is just a small glimpse of my brother and his day-to-day life. These are the reasons that I am often jealous of someone with Asperger’s. Those individuals are able to speak, go to school with few interventions, can use the bathroom, can feed themselves, can get themselves dressed, etc. Sammy cannot do any of these things, at least without an intense intervention. This is why I do not think that Asperger’s should not be a part of the Autism spectrum.
In addition to the wide gap between characteristics, I mentioned how those with Asperger’s have an extreme unity and consider it part of their identity. Although I respect this, I do not understand why one side of the spectrum is viewed as “apart of an individual” while the other side is viewed as a “disability” or a “lapse in development.” I do not think that there should be any separation among the individuals on the spectrum based on their needs. If these individuals are all a part of the Autism spectrum, then they should all be viewed as one community; not the “Aspy community” and the “lower functioning.” There is already enough separation among typically developing individuals for the wrong reasons, although this is in no way an intentional harmful separation, there is no need for a separation among the spectrum. One part of the spectrum should not be viewed as better than the other, which is how I often feel.
Many know that the individuals on the Autism spectrum are completely different. One person with Autism is completely different from the next one you may meet. However, the differences between Asperger’s and the other parts of the spectrum are so different, there is no reason for it to be one in the same. Although I agree that Asperger’s should have been removed from the Autism spectrum disorder, I do think it should be considered a completely different disorder instead of just considering those individuals on the “high functioning” side of the spectrum.
I am thankful for my voice, for my speech, for my communication. Having a brother who is non verbal has shown me how important something like this to a human being. We all may not even think of it as a blessing, but there are tons of people, not just ones with Autism, who cannot talk or communicate. I know that even I, take my communication for granted some times. Last week, my brother and mom came to visit me at work where they got to meet a lot of my clients. The two of them were blown away by how great each of them were at introducing themselves and carrying on conversation. And it is amazing! But when you're not in the presence of someone who does not talk every, single day -- you forget how grateful you should be.
I wish people could be more aware of the simple things like this that we all take for granted! Whether you write, draw, paint, talk, give speeches, use a device, etc. -- If you can talk and get your voice heard, you are lucky! Those with Autism, even the ones who can communicate, aren't that fortunate. They are not always able to voice their opinion, wants or needs. Sometimes they need help -- sometimes, it may not even be heard.
I am thankful for all the people who came to my work's auction. The place was overflowing with people. This is so remarkable to see because these are people trying to understand Autism, donate to the cause, and are accepting. I go to work and to my brother's schools and know that there are handful of people who really care about Autism. But to walk into an auction that is swarmed with people from wall to wall is an amazing thing to witness, especially as a sister. In addition, I am thankful for the amazing people who I have been working with for the past few months. Not only are they doing tremendous things for people like my brother, but they have become some of the closest friends I could ever ask for. I know that you should never take your work home with you, but when I live Autism, I want to take my coworkers and clients home with me every night.
I wish people were more aware of the impact Autism has on siblings. There are tons of support groups for parents and not to take away from their pain at all -- but it is rarely talked about for siblings. Not because they don't realize it isn't a big deal, but because the #1 priority is getting the interventions the sibling with Autism needs. Not everyone is like me where we decide that Autism is going to be our life and we are going to work in the field. Some people resent it, some hurt from it more than others, some are less accepting than you can ever imagine, some have terrible relationships with their siblings and parents because of it, some grow from it, some become great advocates. Just like ever person with Autism, every case with the siblings is different too.
I am thankful that Sammy does not have PICA, ruminate his food, or avoids certain foods due to texture. Including myself, everyone has weird foods they don't eat or are on specific diets -- but I am glad Sammy doesn't eat non-food items, refuse to eat, or puke up food. Mainly because it would cause such an inconvenience! I know that sounds horrible, but it's already hard enough for my mom to make sure he doesn't pee on the couch or prepare a typical family dinner while making sure Sammy doesn't stick his hand in a hot pan, could you imagine if she had to make sure she prepared a specific meal for him or had to make sure he wasn't eating hair off the floor?
I wish people were more aware of these types of things that are co-diagnosed with Autism sometimes. Autism isn't just want they portray on TVs or that one individual you met last year, each individual is completely different with unique behaviors, sensory issues, etc.
Today, one of my co workers had their last day. He has been there for over a year and we had a going away party for him. At one point in the party, we asked if any of the clients wanted to say anything. The "thank you's," compliments, and "I will miss you's" were overwhelming and heart wrenching. I guess you can never truly know how much you mean to someone. It gave me goosebumps and I wanted to cry -- not only because it was so sweet, but it made me wonder, what would Sammy say? I know that I am thankful for everyone in his life -- but what amazing things would he have to say? I know he cherishes each and every one of you -- but wouldn't we all kill to just hear what he thinks? His opinion would be my most respected opinion in my life. If only I could have it.
I am thankful for the kiss my brother gives me and the smile he puts on his face when he sees me. I know that it may not have anything to do with me but its his way of showing me that he cares. Its a small connection I can have with him, that I would have with everyone else in my family when I say goodbye or hello after a long time.
I wish more people were aware of how much we really don't know. Not about Autism in general - but what's going on in their heads. I don't know if Sammy likes the heat or the winter better, I don't know what he thinks about an episode of TV, I don't know what his favorite color is. Yes, we can assume or guess based on things he picks out of smiles at -- but its not like he can actually tell us. Oh, if only I could get inside his head for five minutes.
While I was home, I had an amazing time spending the weekend with my family. Sammy and I went to CostCo with our mom and he had me cracking up all day with his selections.
I am thankful for the dumb, silly things that crack me up about Sammy that we can't explain. I have no idea why he shovels his food in like a goat, I have no idea what he is laughing at when he cracks up at the most random times, I have no idea what he is thinking when he sticks his foot in someone's face, I have no idea why he gets so excited over something like a bag of peppers. These are such little and ridiculous things - but they crack me up and make Sammy who he is!
I wish people were more aware of things like tantrums that Sammy and others with Autism often go through. As grateful as we are for the days when Sammy is well behaved and content around our friends and family -- it is a very small number of you who had witnessed a "tantrum." Although there are cases where individuals will have them way more than Sammy does or way more aggressively, Sammy's are just as intense when he has his. For one, it makes the world stop. Nothing else is going to happen until the tantrum is through - it could last an hour, or a whole day. He had one on Saturday and it lasted a little over an hour. He bites, stomps, shovels through food, takes out the most ridiculous items, screams, etc. In some cases, he is needed to be restrained but someone like my mom can no longer do this on her own - sometimes I can do it on my own, but most often not. Although this could happen once a week, its still something that causes Sammy obvious discomfort/unhappiness, along with everyone surrounded by it.
I am thankful for all of the people that are in my brother's life. He has some incredible friends, family, therapists, doctors, teachers, etc. Without any of you, I don't know where Sammy would be. It is because of each of you that he makes progress and is as incredible as he is.
I wish people would be more aware of the fact that people with Autism are each different. Just because you meet someone with Autism, doesn't mean you understand every person with Autism. Every single individual is different, has different needs, and has different strengths. Just like everyone else, just people you met someone without Autism, doesn't mean that person is the same as the next.
Today is World Autism Awareness Day! So, a "Happy WAAD" to all of my clients and my brother -- you guys have changed my life and I am so happy to have had the opportunity to have known each of you. You all have brought something different and unique into my life that I will forever be thankful for.
I am thankful for the patience that I have been given by the every day Autism experience my brother has given to me -- I may lose my shit sometimes and I may not have the best patience of all -- but Sammy has really taught me to take a deep breath and wait for those who need an extra minute to complete something or comprehend what is being said.
I wish the world would be more aware of the patience that is needed for those with special needs! When I am with my brother or clients, we will get comments from strangers about "how patient" we are -- although it is important; everyone should have this skill! Just because people don't understand doesn't mean that they are allowed to be impatient with people with Autism!
April is Autism Awareness month! Happy Autism Awareness month to all of you affected by Autism. But a special "Happy AAM" to my little brother, Sammy! I am so thankful for everything you have taught me and for everything you have brought into my life and given me the experiences that I have had the honor of being a part of. You are an amazing young man and I love you so much!
I am thankful for Camp PALS - if it wasn't for my brother, I probably would never have became a part of this organization (or other ones like it) and would have never met some of the incredible people I meet and consider to be some of my closest friends - this has brought so much love and joy into my life and I don't know where I would be without it!
I wish the world would be more aware of how much Autism takes a toll on not only the individual, but the family - think about this the next time you stare at the family with the child who is tantrumming in the store - maybe there is something more to it, offer a hand instead of judging!
For spring break, I got to do one of the best things I could think of. Since I have moved to Baltimore and gotten my job, I have spent very little time at home - unlike when I was attending Bloomsburg. So, for a whole week, I was able to spend it with my family. We didn't go anywhere or do anything spectacular - but I was able to just be at home and hang out like old times. It was something I will always be thankful for.
As I'm sure some of you know, the last few months, for me personally, have been extremely hard. I've had constant battles with my housing and my landlord, spent tons of money on plumbing and towing, and would even go so far to say I've experienced a broken heart. Even though I usually like to approach life with a tough and strong, unbeatable attitude - I found myself drowning. Not only did being home do great things for my mood - because my family always cheers me up - but it made me look at things in a completely different way.
Sitting there with Sammy and reflecting upon my first few months of 2014, I realized - Will Sam experience getting his car towed - will he learn to drive? Will Sam ever experience housing issues - will he ever live independently? Will Sam ever experience a broken heart - will he ever meet someone who he loves and they love him in return? Those are questions that will be left unanswered - but will constantly haunt me.
So, even though I really do hate feeling sad over guy, spent hours arguing with a landlord and plumber, or spent money (I didn't have) on towed car -- I have to seriously take a step back and realize, some people will never experience these things. Not because their first crush is their lifelong partner, notbecause they have tons of money to pay for household fixes, not because they have a driver and don't have to worry about parking -- NOT even because they don't want to experience any of these negative things. Everyone wants to fall in love. Everyone has problems with their house. Everyone wastes money. But will Sammy?
Even these upsetting experiences are a blessing in disguise - because at least I could experience and learn from learn. Sure he'll learn life experiences in different ways - but will he get to feel the butterflies in his stomach when his crush texts him, will he have the joy of celebrating his driver's license, will he experience his first kiss, will he have a party with a bunch of his house mates? All of these are great, once in a lifetime experiences, but they also come with not so great experiences - being broken up with, getting a speeding ticket, etc.
With the Spread the Word to End the Word Official Pledge Day being tomorrow, March 5... I found it really interesting that the lecture we had in my American Studies class oddly related. We have been talking about the "Melting Pot" and how different races, religions, etc. were isolated, treated unequally, etc. when America was first settled in. We always talk about how America is made of immigrants -- then why is there all this prejudice? discrimination? Not just then, but ever.
Who is an American? Who is normal? When did we decide that Americans were superior than all others? I'm proud of my country, I'm proud of being an American, I support my troops -- but does that mean I don't respect those who are not from here? that I don't want to understand other cultures? No. Is that what America is about though? I don't have to agree or practice what everyone else believes in or participate in how they live their lives -- but who am I to try and take that away from them? Who am I to say that they are wrong? Just because I am American?
This goes hand in hand with the way we treat those "different" than us today. We call it the "minority." Why is that? Just because theres a few less of them than there are whites? How do we know that we aren't the minorities? Who came along and said we could make the rules? Now, please, don't get me wrong -- when I say these things, I am strictly referring the disrespecting people who are "different" from yourself. We call non citizens, "illegal aliens" -- isn't an alien from another world? Isn't that calling the person less than human? These are what these words mean. They make people feel less than human. Whether its the "n-word" or the "r-word," we are humans. Not labels.
Why do we need to make everyone the same? I know that we have all grown up with the lesson of "be yourself." So, why are we so pushy to make others like us? Why are we so judgmental of those who do not assimilate -- who do things differently? My brother wakes up every morning with a smile on his face and treats everyone equally. Some days I wake up with hate in my heart, feel worthless, or maybe I'm happy -- what makes me better than him? I'm not, in that case -- he's better than me! Maybe we should all try to be like those around us, that we consider "different or weird" -- would it be THAT bad if we tried to see their point of view? Sammy goes through a million more things that I do in the first hour that he's awake than I'll probably experience in an entire week. Yet, I still think that I have the right to not respect liars and cheaters -- or feel depressed or give in to despair. But then again am I contradicting myself? Sammy may struggle, but that's his life. Who am I to say that it is anything easier or harder than mine or anyone else's? That is his normal. What is normal though? There isn't one.
When sitting in class, meetings, interviews; I find myself becoming very judgmental and critical. As much as I consciously try to stop myself, try to sit back and listen -- I can't seem to break the habit. When people are teaching, lecturing, informing, etc... I find myself putting my brother in the position of the so called "client." If I find myself shaking my head or totally going against it, I completely shut down. Not because I am not open to ideas or to learning -- but if I wouldn't put my brother in that position, why would I put any client in that position?
They say not to get too close to your job, to your clients. But are the best practitioners the ones with first hand experience? Aren't they the ones who get too close to each case? Aren't they the ones who take their work home with them?
If I wouldn't do a certain technique or therapy for my brother, why do I have the right to do it for another person? That same person is someone else's son, someone else's brother. Now, don't get me wrong, I'm not saying that I would write off every technique just because I wouldn't put Sammy in that position. There are things are don't fit him because of who he is. Things that might work wonders for other individuals. What I am saying that if it causes me to shake my head, to think of it as treating them less than a human, mocking their Autism -- I wouldn't agree to it. Not that any therapies or techniques strictly try to treat the person unequally -- but some things really seem like that. For example, as much as ABA succeeds, isn't it what we do to train a dog? This is what I mean.
I know it sounds harsh, that I am being overly stubborn and ridiculous. But when I'm learning something new or in an interview, I think of it as a sibling. Would I be okay with this person teaching my brother this stuff? Would I be okay with this person coming to help him based on this interview? My most recent interview literally consisted of me checking yes or no to my experience. No further detail was needed. Although I know that I am there for the right reasons, if I knew some of the therapists that worked with Sammy were being interviewed this way -- would I be as trustworthy? Probably not. Someone could slip through the cracks -- and do incredible damage to my brother, or others with Autism.
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
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.