sorry, he's not going anywhere!

I may have or never have mentioned this before BUT if I'm asked the one person I adore the most in my family, the answer would be my 11th years old brother, Aldy. In fact, he's definitely in the top list of a very few favorite people I can honestly say I love with every fiber of my being.

He's the baby in the family, naturally, since he's born the last. He's this little chubby kid you cant actually make fun of in elementary school because he's that lovable. Always smiling, wherever he goes it seems like he radiates happiness and charm people all over. If you see him from the other side of the room you may not be able to point out the differences between him and other kids.

But he's different, he's positively diagnosed for autism spectrum disorder ever since he's 2 years old. Mainly the autism part.

My parents see it as some kind of disease that has to be cured, I don't precisely know how much money they have spent to get him treated. They've tried everything from modern medicines and therapies to experimental alternative ones. I've grown to see it as a lifelong conditions that we just have to put up with. "He's different, deal with it and be there for him" is basically what I pointed out but they just shot that idea down and screamed at me. It has been happening for years. "He has to be normal someday" is something they would say every time. They just ignored the basic fact that while treatments will always be available, there's no exact cure of Autism Spectrum Disorder.

Funny, it's the only thing these days that they agree with. They basically don't speak to each other, too long and too private of a story to tell. My youngest brother is seen as a problem but he pretty much glues everyone together. Everyone in my family loves him.

Comparing to a lot of kids who have autism, he's not that bad. Sure, he has problems in communicating, focusing and concentrating. We have to get his attentions to make him listen. He keeps repeating words, has limited vocabularies. He's easily distracted and pretty much common to emotional havoc and sudden little tantrums. But he's not anti social like some of these kids at all. He can read, understands basic rules / what's good or bad, he can do simple things on his own, and has incredibly strong memories. One night when he was 3, he laid on my bed opening up his favorite Barney book and recited everything from page to page to me. He hadn't even been able to read yet, I just read it to him a couple of times before.

And that's why exactly my parents are deluded. We always have troubles in picking a school for him because although there are a lot of special schools that cater to his needs, my parents wont go for it. No special schools, they say he's not that bad. Let's not put him in a place with kids with worse conditions because kids make fast impressions and they don't want him to pick some new "habits". So far for his elementary school, which's spent so far in 3 different places, my parents picked normal private schools which accept two "special" kids in each class for a price. A ridiculously high price.

I used to think it's a bad idea ( Hey! I'm a first born and the only girl, I have tons of things to say! ) because there are always bullies in normal schools. How if he gets bullied for his autism, for not being normal then they alienate him? But my brother is special even more since every year, I haven't heard such thing. It's like the jungle rules don't work with him, the little dude is loved. Not only loved, he's popular. I even think he's nicer to people than I am.

So that's why I was really upset this evening and I need to vent here. He's 11, he has at least one more year in elementary school. Then normally he has to go junior high school / middle school, right? Well no regular / normal junior high schools here in the city that have minimum 2 special kids quota in each class. We've looked all over. The only chance for my brother to continue his education to a higher level in the city would be if my parents actually enroll him to a special school. Something they would never even consider in the first place.

So my dad just told me that they have succeeded making my brother avoid any special school for the past 8 years ( plus kindergarten ) so why would they have to change that? My brother has to be in a normal school and for his special conditions, we'll continue hiring around 2 or 3 private therapists for him.

I asked him whether he's crazy enough to think they can bribe regular middle schools too since all of them flat out said no, or he wants to give homeschooling a chance.

He said neither. Apparently there's a regular middle school open for my brother after all, in a different city. Not a city actually, it's a town. Small town. Approximately 5 hours from Jakarta. My dad thought it'd be a nice change for him, said the city can be overwhelming for my brother and not making it easier for him to grow up. He's already in the talk with some people to buy a house in this small town. It wont have a lot of impacts to his job because he's already a lawyer in the position that only needs to go to a formal meeting in offices once a week or less and paper works taken care of by his workers. He basically doesn't object leaving the hustle and bustle of Jakarta. Maybe he needs it too.

My responses? Not too good. Not too good is actually an understatement. Have you ever felt so upset, angry, frustated, hurt and sad so you scream at the top of your lungs while cry uncontrollably at the same time? I haven't felt this bad in a while. Sure, I cry from time to time but this? It's a helpless one. You can always do something in other situations.

Your boyfriend makes you cry? You can avoid him, talk to him or dump him. Your best friends make you cry? You can talk to them or stop being friends. Then the problems, although hurt, may eventually be gone.

But how can all these be gone? One thing for sure I'm not gonna let this happen. Call me stubborn, call me anything but he can't just drag my brother to the middle of nowhere over a problem he has other options to fix but too proud to even consider, as much as I love him.

Not while I'm here to do something about it.



42 comments:

  1. Miss Rosa said...:

    I love that you are a great big sis!

  1. Melissa said...:

    I have an Autistic cousin and I see it as somthing that can't be "fixed." I can't begin to fathom how it feels to watch your child struggle with something you are powerless to fix.

    Great post!

  1. Deutlich said...:

    I work in an industry that helps children such as your brother. It pains me to see that some people will never grasp that some things are just not "curable"

    And I'm so very sorry that you have to deal with it.

  1. Jessica said...:

    I'm sorry that you have to go through something like this. It really sucks that your parents just wont understand that that Autism isnt something you can cure. Your brother is really lucky to have you as a big sister. He needs someone in his life that will just except him.

  1. Cheddar said...:

    You're a great big sister! I live 2,000 miles away from my brother right now and I know how tough it can be. Way to stick up for your little bro. Good luck!

  1. Nic said...:

    Your poor brother, but at least he has a lovely big sister like you! I hope you win the fight to keep him at home.

  1. ScoMan said...:

    Firstly, I love your attitude. The whole "Let's not fix him let's just accept and love him" thing is wonderful.

    My boss has an autistic son and he is one of the happiest, friendliest people I know. He can light up a room.

    And then, right when this post was making me happy and I was thinking about how much you love your little brother, it turned bad.

    It sucks that they want to ship him off so he can go to a middle school in the middle of nowhere. Fight the good fight Andhari, and I hope you get your way. Because it's the right way.

  1. Brooke said...:

    Such a tough situation... I'm sorry to hear that this is going on :( Your brother is so lucky to have family that cares so deeply about him, and especially to have you. I'm not going to even pretend I have good advice here. But stay strong and continue to love your lil' bro as much as humanly possible!

  1. Sheri said...:

    You are such a great person and an awesome big sister. Your brother needs you in his life and your Dad just wanting to up and move him out of his stable environment is probably not a good thing to help his autism. I hope you can persuade him to stay and seek the other options. ::big hug!::

  1. floreta said...:

    aww andhari, this is a sweet post bcos it shows your sisterly love :) i agree there is no cure for autism (like you said it's a fact not really an opinion) and it's sad when people don't realize this bcos it's like they can't even accept their own kin :( i find autism fascinating. have you read Born on a Blue Day by Daniel Tammett (i think that's his name).. he's on the Autism spectrum with Aspergers Syndrome and is also a savant. really interesting stuff!

  1. freeteyme said...:

    Another side of you I have not read before. I was touched, as big sisters and being the eldest too, we tend to be very protective of our younger siblings. We take our roles seriously. I don't have the same situation you do so I do not know how it is. I have an aunt who specializes in Autism (Columbia University in NY) who tells us stories about her kids (that's what she calls them) and how proud she is of their developments. There may be no cure but they can function "normally" in society. I can give you her email if you want someone to talk to ;-). Good luck sweetie!

  1. joeygirl said...:

    i feel the same way about my baby brother. he may be 25, but he'll always be my little guy.

  1. Margarita said...:

    Oh Andhari, my heart broke a little as I read this. It's obvious that you love your brother so much, I really truly hope some kind of solution comes about. ((((HUGS))))

  1. Chase said...:

    your little brother sounds like an awesome fellow. He's lucky to have a big sister that's willing to put his needs over hers.

  1. Gracie said...:

    This is such a tough situation. Your so sweet and love your brother so very much and are trying so hard to figure out a solution. I truly hope it works out and your parents will be open to other suggestions. (Your brother will know that he is loved, especially by you).

  1. Moonjava said...:

    You're an awesome big sister! *HUGS*

  1. All kids with autism need a sissy like you! Good job!

  1. Larissa said...:

    aww, I'm sorry you're so sad. You know, autism is becoming a regular thing among children. I don't know a whole ton about it, but my younger half sister- same age as your brother- has it, and pretty bad. She's a couple grade levels behind all the other kids her age. But, shes incredibly clever. I love her so much. and she's adorable.

    I hope things work out and a better option comes along. i'm glad you can love and appreciate him for who he is and not what his disabilities are.

  1. tiff said...:

    Awww, I'm sorry to hear that. Had that happened to me, I'd be severely disspaointed and totally pissed off, so I can understand why you're feeling like that way.

    Also, it's also sad to hear that some people can think that Autism, be it Asperger or Spectrum, can be treatable. Wish it was, but it isn't, so people, such as your parents, really have to grasp the fact that ASD will always be part of your brother.

  1. Nashe^ said...:

    No offense, but that is really how affluent parents act. I know some rich folks here who refuse to accept the fact that their child has dyslexia. They can't accept that when everything else is somewhat perfect in their lives, their kid has to have some sort of problem. I say, stand your ground, Andhari. ASD made your brother the lovable person he is today, and he needs someone like you around to tell your parents that.

  1. Carissa said...:

    you are an amazing big sis. you can see in this post how much you care about your brother and his well-being. I know you are frustrated right now and you feel helpless but keep fighting for your brother. My brother doesn't have autism but I do understand the situation kind of. when you feel like your parents are not making good decisions, when you feel like you have to tell them how to be a good parent, but they don't listen. I get it, for my own (very different) reasons.

    I have a friend who has a sister with autism and luckily his parents seem like they get that it is not curable or "fixable." they have done the best they can to deal with the situation as it is, to provide as normal of a life as possible. I don't know the extent of her autism compared to others, but she is a great girl and, in a way, her "disabilities" are kind of inspiring.

    but, I understand too that it must be very difficult as a parent to accept that your child is not like other kids. still, your brother is 11 years old, so there comes a point where you have to face facts. I wish you all the best in this, I know it is hard and there are no easy answers. but the best thing you can do is to keep loving your brother.

    thanks for sharing this with us.

  1. Sebastian said...:

    Well, I hope you get what you're looking for -- but it sounds like your parents have looked after him quite well so far! I don't know any other autistic kids, so I have no idea on their quality of living, but... it certainly sounds like your brother has done well so far :)

    Just make sure it's in your brother's best interests I guess, and not just your dad's. But they are his parents...!

  1. drollgirl said...:

    you are such a great sister, and i love that you LOVE YOUR BROTHER JUST THE WAY HE IS. you accept him.

    i don't want to talk trash about your parents, as i imagine they want the best for your brother. but i think i am in much more agreement with your assessment of the situation and how your brother should be schooled vs. your parents' views.

    i wish there was something i could do.

    whatever the outcome, your brother is so lucky to have you in his corner, always. and you are lucky to have him, too.

  1. Bayjb said...:

    You are a great sister. I think it's so great that you two have a nice relationship. That's so important.

  1. I'm proud of you. My sisters do not have autism but I still sometimes find it hard to communicate with them and I feel like they are so distant most of the time. I guess that's "growing up". You can reach out to your brother and make him feel loved. Don't let him out of your sight.

  1. Chele said...:

    My cousin ha autism as well and finding schools for him has always been a problem.
    Thanks for sharing this, really great post and think you are a great sister.
    I understand this must be heartbreaking for you, for your brothers sake I hope he finds a place he can be happy! I dont like the fact that he is going to be taken away from all he knows and thinks he should be near family, but that is my opinion.

  1. jen - tsk said...:

    It's great that your brother has you!! I'm sure your parents are only doing what they believe is right, but I think, whatever culture you're from, generations of our parents' ages and above just can't comprehend some things and some do believe that everything is "curable". Things like ASD / ADD / ADHD weren't so widespread or understood when they were our age.

    We have several special schools around where I live and I work quite closely with a couple of them through my job. I really feel for those with ASD in their families because the condition can be difficult to grasp, but it's definitely rewarding in it's own way for those involved!!

    I'm really proud at the way you relate with your brother, you really are lucky to have each other.

    I'm sure it'll work out in the end, however stressful and upsetting it might be getting there! xx

  1. Lion-ess said...:

    Very emotional... I can tell how important and precious your brother is to you and your family. I hope your dad listens to you and maybe even to your little brother.

    Stay strong!

  1. katyhelena said...:

    I think it's great you love your brother so much! I will say a prayer that it all works out ok.

  1. OmegaRadium said...:

    My dad is a "Special Education" teacher here in the US. He is certified to deal with students with all types of learning disabilities and condition. Believe me when I tell you that children with special needs do much better when mixed in with regular students.

    To separate them into a special school and isolate them from the "regular" students undermines the very foundation of the education system. The point isn't for them to be isolated in school, only to be cast into the real world upon graduation. Their goal is to have them be a part of the real world from the beginning, so when they do graduate, they are better prepared to deal with life.

    I know you love your brother, but isolating him just isn't the way. Let him go, for his own good.

  1. miss rambles said...:

    my youngest brother was diagnosed with having dyslexia granted its no autism but my parents refused to acknowledge it and sent him to the same schools as my siblings and i and he suffered immensely because of it. it took him a long time to learn to talk and even then he would only talk to me and we became very close and i was/am very attuned to him without him having to say anything. it was only after the head master at our school said to my mother tht my brother was stupid and to save money my parents should just take him out of school now, that my parents finally sat up and did the right thing and got him the extra help he needed.sadly this meant he was now 2 years behind his peers but its been worth it because next year he will start uni studying accounting suck tht jnr sch headmaster!!

    you cannot ignore a problem and hope modern medicine will treat it to suit you and its unfair your brother has had to go through this cos he sounds like an awesome kid ( and you and even better sister for being there and accepting him as he is).

    maybe the new school will be good for him, its jst unfortunate its far away but i think they need to make sure he gets help while at the same time nourishing him as a person so when he is older he can look out for himself cos am sure he too wants an independent life.

    sorry for the long comment too many thoughts but i hope u ok **MASSIVE HUGE hugs**

  1. Anna said...:

    You're brother sounds amazing. Keep speaking up - someday it will pay off! In the meantime, I hope the new school is worth it (for your brother and your brother alone) to make such a giant move for your family. Good luck!

  1. amindinmotown said...:

    The bond you seem to have with your brother is something I'm envious of. You fight for him, you love him so much, it's amazing, and you clearly make for a great big sister.

    Hopefully your parents do what's in the best interest of not just your brother, but your whole family and keep him near. Families just aren't the same when spread apart.

  1. Passionista said...:

    How frustrating this must be for you. I know I've disagreed with my parents decisions over my younger siblings too, but I can't imagine what it would feel like for this to happen. It's sad your parents are being stubborn over this. Why don't they send him to a special school and then see if there are any openings after a year? Good luck!

  1. ceecee said...:

    I can't imagine what goes through a family when they find out one of their own has autism...Autism is definitely hard to deal with (regardless if you are the one who has it or if you are the one witnessing it on someone else).

    Here in the States, autism creates a stir of opinions...the health insurance companies don't think they should cover anything dealing with autism because they don't view it as a major disease (for the lack of better words). This upsets me very much.

    Not only are you an awesome person, but you are an awesome friend & an awesome sister. Keep being their for your brother, and continue to speak with your parents.

    I don't think putting your brother in "regular" classes will be a good idea. There are too many "normal" kids who will not understand what your brother is going through, and thus may joke around.

  1. amber said...:

    My little cousin has autism and although he probably will never be "normal" he has made great strides in the last year. I have watched his mom and how much time and energy she spends worrying about him, taking care of him, providing the best for him, etc. I wish you all the best. :)

  1. im so sorry. that is a tough situation and just know im praying for your family.

  1. Sarahahaha said...:

    aww, i'm so sorry your parents aren't more supportive. at least he has you in the fam to be there for him and accept him for who he is. you seem to be so caring and understanding!

  1. DocE said...:

    You are a very kind person Miss Lolita... I can appreciate the depth of your care and love for your brother. It actually moved me close to tears (I know! See what you do with all your loving kindness crap?!?!?!). No, really though - this is so touching, I wish we all had such a dedicated compassionate person advocating for us. The world would truly be a better place.
    Have a good Thursday evening Sweet Friend.

  1. nityamonto said...:

    Wow.. it makes me sad, too. My sister diagnosed with lupus no exaxct cure for that disease, too. the whole family try to keep up with this and stay positive. as long as you still have love for him then it won't be matter babe. he's gonna be alright. we're relate! :)

  1. Sam said...:

    Andhari, I've been meaning to comment on this for a while. Thank you for sharing this story. I think your brother sounds like an amazng person who has achieved a lot in his life so far. It's great how much you love him and stand up for him, especially disagreeing with your parents. My mom is a speech therapist and has worked in special education in public schools for a long time, so I know the issue of specialized classes vs. mainstream is a complicated one. I think the best thing you can do is continue to be there for your brother, and love him, no matter where your parents decide he should go to school. Beautiful post!

  1. you made me cry. i love you brother (even though i've never met him). you portrayed him as this one amazing brilliant kid, which he is. i'm going to give my doraemon bro a big hug tomorrow. he's sleeping on my bed right now :P