Dear SEPTA

Dear SEPTA,

I wanted to take the opportunity to thank you for again leaving my brother without a ride to his job. It was so thoughtful of you to not let us know that he wouldn’t be picked up today and instead stay home alone all day with nothing to do. As a result, his job counts his absence as a “no show” and could put him in jeopardy of losing his job. I can only hope you are this considerate of all your clients whom you charge an arm and a leg for to ride your crappy van.

Thanks bunches,

Kristen

As you can tell, I’m not too happy with SEPTA today. As I was beginning to think about my brother being left at home today, I had an epiphany. I can’t imagine not being able to get somewhere that I wanted or needed to go. If you know anything about my brother, it would be that going to work for him is like breathing. He loves going to work everyday and actually gets upset if he can’t go. It is not the first time SEPTA has not picked my brother up and probably won’t be the last time. My brother is so dependent on others for so many things. I can’t even think about it. While he does have his friends, it isn’t like he is going out during the weekends to hang out with them. He is unable to drive and requires one of us to take him to his events and activities–which we don’t mind. Sometimes I wonder though if he minds–like if he even notices. It makes me question whether he is ever bothered by being dependent. I guess he doesn’t really notice because he doesn’t know any differently. I know he gets very upset when he wants to go somewhere and can’t get there because of a lack of transportation.

I want there to be a way for him to be independent. I can’t imagine getting older and not being able to get somewhere. It makes me angry that someone could just strand my brother without transportation and it makes me frustrated because I can’t always help. Independence is so much a part of our culture that to not have that sense of freedom makes me feel limited just thinking about it…can you imagine living it?

PS. I’m sorry that I have been so MIA lately with my blog–I’ve had a lot going on with a new job and some not so happy moments with a person I care about very very much…I’m hoping to get back into the habit of blogging here

Can anyone predict the future…?

I recently ran into an ex-neighbor at the gym when I was with my brother working out. Like me, she is the younger sibling of a man with a mental disability. They are closer in age than my brother and I are but have a completely different relationship. Their mother died and their father remarried very quickly after the death. As a result, the young man, who is now my age suffered from this life transition. His mother was always the one who wanted him to get the care and attention he needed. He was a fully functioning down syndrome person who was in special education classes and working on any other issues he had. After the unexpected death of his mother, K was put on many different medications and lost the support system he needed to survive. After running into his sister, J, she told me how well he was doing working at a place called Ryan’s House–which is basically a workshop for low functioning handicapped people. This is not the place that K was meant to end up. He now spends his days doing odds and ends type jobs when he could be at least holding down some sort of full time work perhaps stocking shelves at a local grocery store. I still see K at bowling when my brother goes and the deterioration of his mental state is astounding! You can barely understand what he says when he speaks to you.

It is this interaction that really got me scared about my own brother and what the future has in store for him. Ideally my brother should be able to live in a group home setting with perhaps a house parent but with group homes in such high demand it is nearly impossible to get him in to one let alone a good one. It’s scary to think how one occurrence in a life can change the whole course of someone else’s life. It’s weird to think that one day my parents will not be around to take care of my brother and I and his needs will be left to me. I will be the one who is left to fight for his SSI money and the septa workings about getting his van to pick him up and drop him off. I will need to make sure that he has activities to go to and that he gets there. I am responsible for making sure that my brother has the best life he could possibly have and for as long as he can possibly have it for.

In the end–this will probably be the scariest thing I will ever face in my life. I don’t know if I’m ready for it.

Growing Up..?

I have noticed recently that my brother is changing. For those who don’t really read my blog often, I am 23 years old and my brother is 28 now. My brother has always been the person who will help anyone in need, didn’t now how to tell a lie, and never really had those “not nice” words in his vocabulary. Now any “normal” 28 year old man might be willing to help anyone in need, most likely know how to tell a lie, and definitely at least know those “not nice” words. Over the recent year or two, I’ve noticed my brother’s willingness to help has decreased, he lies all the time about things that would not be deemed worth lying about, and using “not nice” words even in random settings.

The underlying comment here would be that I think he has matured. I was speaking to my dad about it and we were talking about how my brother has changed so much. The idea is that he is maturing into that stage of “preteen” when children are usually defiant and learning how to grow into their own. My brother has these fits of anger-not scary anger-but frustration anger where words are not enough to fully express how mad he feels. I remember feelings like that when I was young. Learning nasty words from work have been a big issue as well. Four letter words really don’t have any meaning for my brother other than he knows they are bad and he isn’t supposed to use them. But he hears everyone else using them so why can’t he? If it is another word that could help him express whatever emotion he feels, then why can’t he use it? We all grow up and experiment with our boundaries with parents, friends, other family members, etc so why should my brother be different? Well he is now a 28 year old man experimenting with boundaries and as a member of the “mentally challenged” community, he is held to different standards than “normal” growing people are held to. My brother is very strong and a fit of anger could end with disastrous consequences-not that he would hurt someone or mean to hurt someone but he COULD hurt someone. The worst part of it all is the lying. He lies about everything. He never used to know how to lie and suddenly it’s about everything aka nothing even important! He lies about whether he emptied the dishwasher or threw his laundry down the shoot to the basement. Instead of saying, “oh no, not yet” he just says whatever he thinks will appease whoever he happens to be talking to. While I don’t remember flat out lying as a preteen, I remember little fibs about things I didn’t want to do.

I wonder if this change in behavior shows how my brother is not yet finished maturing. He is delayed mentally obviously so why would it not be any different psychologically? There are times when I definitely feel like the older sibling because honestly I mentally am the older sibling–which I think is sometimes challenging/frustrating to my brother. He can only watch as my friends and I might go out for a drink or a night on the town because the reality is, he isn’t going to go and grab a beer. I can only wait and see how my brother continues to change and mature as he and I grow up together.

Clarification of Embarrassment

My friend who follows my blog told me last night that he thought my previous post came across too harsh so I’m writing again to clarify my meaning.

What my post was meant to convey was the idea that it’s hard to be so embarrassed by someone in your life who cannot control all of their actions. My example of my brother throwing a fit about Christmas dinner was meant to show how he cannot express himself emotionally and therefore acts out–in most cases concerning food. My brother was exhausted and up way past when he usually goes to bed. Instead of saying he was tired and ready to leave to go home, he lashed out and started yelling about taking food home. This whole scene is really hard for me to describe to someone who hasn’t witnessed it before. Now obviously my aunt and uncle know my brother and love him and know why he was doing what he was doing but it would’ve been hard to explain to someone else.

I guess I just feel like I’m not any different than anyone else–I get embarrassed by my brother because of the things he does. After having yet another fight about something as simple as a banana I can say that not everyone really understands my brother. I guess all I really meant is that  no one can really be comfortable around my brother and I understand why. But there are times when I’m not comfortable or I’m embarrassed by my brother–I’m not any different than anyone else. There are times when it feels as though society tells me that I am supposed to be different though. I’m not supposed to be embarrassed or uncomfortable. I want to know where I got this magical ability to not be embarrassed? Why can others feel strange around the mentally challenged but I can’t? Because he’s my brother that’s why.

We all face challenges that we have to overcome. It is not often that my brother embarrasses me but it does happen. Sometimes it’s easy to just shrug it off and tell myself I have to get over it and I do. It gets easier and I can only hope that this little excerpt makes more sense in the wake of the last.

Embarrassed

No one really wants to admit the fact that their special needs sibling embarrasses the heck out of them sometimes. They don’t want to admit that because we’re “supposed” to be better than that. There is a constant pressure to be better than “outsiders”. When were we assigned that role?! I don’t feel as though I was raised any differently than anyone else, so how is it that I magically don’t feel that twinge of shame when my brother is singing happy birthday to me in the gym six months after my birthday or making a fuss over food…?

That is what we always fight over–food. It is the common enemy in my family. My mom thinks it stems from my brother’s childhood when his body was deprived and could not get enough nutrients to itself. So now we have at least two battles daily about my brother eating too much. It’s embarrassing to tell my friends why when I leave my brother alone, we have to literally lock the refrigerator and not have that much food in the pantry or the garage fridge. It’s embarrassing when we went to my extended family’s house for Christmas dinner and my brother insisted on taking food home. Am I NOT supposed to feel this humiliation because I’m used to it? Does anyone ever get used to feeling embarrassed? I can’t control the actions of my brother or the reactions of others around us. I can only control myself and how I am. But I can’t be feel that angry welt in my stomach when my brother starts to act up. Why does he have to be that way sometimes?! I’m tired of just pretending like it doesn’t matter or that I’m not bothered by it. Sometimes, I feel like I’d rather just sit down and cry.

I’m supposed to not be bothered and I’m supposed to not care about it because I’m his sister and I should be used to it. At least, that’s what it seems like the world wants from me.

What about what I want?

I’m not my Brother’s Mother

Let me just preface this post by saying I love my brother very much and do not blame him in any way for the way my life is.

That being said there are days when I get so frustrated with the way my life is set up. Sometimes I feel more like my brother’s parent than his sister! What would my parents do sometimes if I weren’t around? I drive him places, I get him stuff he needs, I come home if there needs to be someone with him. I feel so stuck sometimes! I will never have a life independent of my brother’s life because someone has to constantly be there in case he needs something.

Yesterday my parents couldn’t get home to take my brother somewhere which happens sometimes-no big deal. But yesterday really bothered me for some reason! I wasn’t supposed to be home because I had a staff party to go to but ended up having some time to come home to sit for like a second before I had to take him. I guess I just feel so jealous of other siblings sometimes. They don’t have to take care of their brother or sister the way I do. They don’t worry about medicines, food, doing laundry, getting their sibling somewhere because they can’t drive, helping with hearing aids and tying shoe laces. It gets to the point sometimes where I just want to sit down and cry. There is this feeling of responsibility as though my parents shouldn’t have to face this whole thing alone but I have to say there are those selfish days when I just want to be away from it all.

Some days I wish I could know what it’s like to just be someone’s sister. I want to know how it feels to have an older brother who protects me instead of me protecting him. I want to know how it feels to see my brother move on int life and go to college before me, get married before me, have kids before me. I know this is selfish but I can’t help that some days this is exactly how I feel…frustrated and stuck.

Is that totally awful of me…? Probably..I can only hope that I am not alone is this selfish moment…

Thanks are in Order

I feel like everyone I read gives a piece of themselves to all of us, so today I’d like to re-point y’all toward Kristen over at Special Siblings Speak. She’s just getting started, but what she says is definitely heartfelt and really important. I love reading her and her genuineness (is that a word?) It’s also a perspective I don’t see often in the blogosphere. Go on over to check her out and let her know you’ve been there, to encourage her to write more.

*From stayingafloat

I just found this on stayingafloat’s blogspot and I have to say I’m totally touched. I started this blog as a project from my graduate class and in the process have found that blogging is actually pretty therapeutic. I didn’t realize anyone was even reading what I had to say. So, in short, I have to say thank you stayingafloat for all the support. It’s nice to know that my ramblings are being read and understood. I’m really excited to continue this blog even after the class is over and turn this website into something more. Somewhere where many siblings can come and share their thoughts and worries. We all need a support group.

The Age Old Question, Why me?

The holiday season has me thinking about the many people and things that I am so lucky to have in my life. There are so many in the world that are hurting or suffering or are in need of something. This is the time of year when we are all supposed to look at our lives and realize what we are thankful for and what we appreciate in our lives. The biggest question I always have is why me? Why do I have a special needs brother?

I don’t mean this question is the way of “woe is me, my life is so hard”. I mean it more as a real question-why was I chosen to have this challenge in my life? I think we all get different challenges and different obstacles in our lives. Some people have medical problems of their owns, or parents with medical problems, or learning problems, etc. I always wonder why I was given a special brother. It makes me wonder what life would be life if I didn’t have my brother in my life. Would I still care about others? Would I still have the same drive to make a difference in the lives of those who are in need?

Are we given these challenges and obstacles as a way to show us how our lives are supposed to go or the path we are supposed to follow? I always think that there must be a reason that my brother has special needs and that I specifically was chosen as his sister. There is a reason for everything that happens in this world and everyday brings another piece of the puzzle to figure out. I just wonder why I was given this specific challenge in my life.

Relationships

It is no secret that most people search for that “special someone” in their lives. Whether it be a guy or girl or neither, we all want that certain “other half”. There are criteria we all search for and traits that we find in others that we see as lacking within ourselves.

Most people worry whether the person they decide to be with will get along with their family especially mom or dad but not many have to worry about what will happen with their significant other and their family for the future. I wrote in my original post that part of me worries constantly about find a guy who will love my brother as much as I do–I still have that fear. Every time I start a new relationship with someone, I can never decide when is the right time to tell them that I have a disabled brother. Is it something that you just let come up at some point? Do you wait until a few months into it and spring it on them? My brother is such a part of my life, it’s hard to imagine not talking about him for the first few months.

Then what do you do to their reaction? There is that guy who says, “aw, I’m sorry” and give you that face (you know the face I’m talking about) or the guy who tries to relate by telling you about the one handicapped person he has in his life and how he/she has been so great or that person who doesn’t know what to say and things just get awkward. No one I’ve ever dated has really even known how to react to my brother let alone relate to him (with the exception of one). This one exception is what makes me even write this post. My ex-boyfriend/still best friend is the best around my brother. I wonder if that is how it’s supposed to be. I want that person who will be around my brother and be comfortable–the person I don’t have to be with when they are with my brother. But I don’t know if that’s enough. Do you only get one of those types of people in your life?

My brother is important to me but I’d love to have a relationship too. I hope to have my brother in a group home but what if he does end up living with me/my family? I guess I wonder where to find these special people to date? haha I’ve found one that didn’t exactly work out. I’m not entirely sure what to think.

Relationships are so hard but to add the factor of them having to love your sibling too? Is that asking too much of someone?

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