Today, as I was blogging, my brother walked in. He didn't say anything, he just sat down and watched me type. He looked at me in a way that words can't describe. I was looking into his eyes at what was in his soul.
My brother is autistic. He doesn't talk. Autistic children don't usually make eye contact. So the very little communication that I do get from him is rare. It's hard, like standing on the edge of a cliff. You don't see anything ahead of you, and life at times seems grim. I have wondered, who will take care of him when my parents are gone? How will he understand? How can I reach out to him and explain? At this cliff, I can't move forward. I can only look back. I can only look back on how in the past 17 years of my life I have never had a normal brother. I don't know his favorite color. I don't know if he would have liked to play scrabble with me on friday nights. I don't know what its like to have a conversation with my brother. As I write this I am crying. I don't know why. I don't know why all feeling hasn't been numbed, I want the pain to numb, I just want my brother back. I want to know what he likes, I want to know if he prefers chocolate or vanilla, I want him to tease me, I want to see his heart and soul. Maybe I am asking for too much. I just want the 17 years that I have gotten used to him to overcome any hidden feelings that I have left of grief,sometimes anger, and simply "why?"
Today, as I was blogging, my brother walked in. He didn't say
anything, he just sat down and watched me type. He looked at me in a
way that words can't describe. I was looking into his eyes at what was
in his soul. I wondered, what is he thinking? He looked at me so intently like he was dying to say something. I thought, there really is a human in there, a being with a mind and a soul. I started thinking, maybe, just maybe he will say something. So far, he hasn't said it with words. Sometimes, if you look hard, you can read it in his eyes. We sat there in silence. He searching my eyes, and I searching his. What did he find? Understanding. We both found understanding. This is the way it is. That moment we shared I will always treasure. We both have different roles in life. In his eyes, it was like he accepted his. Like he had this far away look that was beyond my understanding. Does he know that he is autistic? He looks far off at times, and we sit in silence. The silence that created a gap between this complete stranger that I live with. This stranger who I know nothing about besides his name. The silence is deafening.
That was really good.I did a research paper on autism and its really sad because an autistic patients are just like us they just have problems socially interacting.So keep trying to connect with your brother because he does know when you make the effort and does understand.
http://www.progressiveu.org/blog/speakonitsista
You guys, I want to thank you so much for all the support. He is slowly beginning to speak, mainly because of his new social environment. I see a bright future ahead of him. For everyone else who is going through the same, don't give uP!
I had an autistic brother who used to make only sounds and gestures. But if you spoke to him he would understand everything that you said.
Now he speaks. Not very well though; its as if he has something heavy on his tongue, but he talks. We don't know how.... I guess its a miracle. But he knows everyones name and whats been going on around him for the past 13 years.
So your brother can understand you and can feel when your trying to connect with him, he just cannot respond.
Keep being there for him.
http://www.progressiveu.org/090204-dont-miss-this-chance
Thank you so much for your comment. It means a lot. I think that the fact that humans can connect beyond words shows we have souls and spirits. WE can connect through just feeling, through a glance, things like that which show the true inside of the person. And if their is a spirit, and a soul and something inside a person deeper than physical, there must be a God right?
DISCLAIMER: I am not being rude. I'm stating my opinion. No personal attacks are meant. Please give some leniency on how you take my words. imagine me saying them with a smile. ^__^
Sure, there is a gap between thought and manifestation of speech. I was in a coma when I was 8 for two weeks and when I came out of it I lost all motor function, including how to speak, eat and walk. I'm positive that he's got so much to say and it's wonderful that you've found those momentary connections, even if in a glance or touch of the hand. The real problem with our development is we've blocked off these senses of communication. Blind people see with their ears, like bats. It's just something that's been more developed. There are modes of communication that exist between people, between moluecules, between the quarks, electrons, etc that we're just too limited to understand and be aware of. We say much more than just words, messages that go deeper than whether he likes vanilla or chocolate.
I can understand how you're feeling because I've seen things like this on TV; also, one of my little cousins is autistic.
http://www.progressiveu.org/090204-dont-miss-this-chance
Not to sound rude, but I am not so sure that you do understand, even though I greatly appreciate your thougtful comment. What goes on in real life and what happens in the movies-you can't compare the two. When you watch a movie, it has an ending. Its over. You feel sad for a little bit, but thats it. Life is different. And cousins, yes it is hard too. But you don't actually live with your cousins. You can always drop your cousin off at your aunts house. You don't have to deal with the everyday frustrations and ups and downs. SO please don't compare the two.
Does the insane know he is insane? Or does he feel he is the only sane person out in the world?
Similarly, does the autistic child know he is autistic? Or does he "think" in a way that is different from our everyday world concept of such a term, and that, in his eyes, we are the ones who are vastly underdeveloped?
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"It is the final proof of God's omnipotence that he need not exist in order to save us."
-Peter DeVries
http://www.progressiveu.org/090204-dont-miss-this-chance
Yeah, I thought about that. I think that whether a person is insane or not they know what they are. Many insane people that have committed crimes and escaped form institutions have been on trial and know that they are insane. I guess the one on one counselor sessions would prove from what they say that they knew what they were doing at least somewhat. About autistic kids, I don't know because they aren't gifted will all the priveleges the brain has to offer us. Do autistic kids have a conscience? Well, they probably do because their soul isn't autistic, just their brain. I don't know if they see more than we do or think more. Maybe they just are ignorant of their surroundings and oblivious to the world out there.
No, the autistic are kind of clueless about everything that goes on in the world. But then again, there are various degrees.
And then there are the savants, who openly show us how much we can learn from the same people we deem ignorant, uncivilized, vile.
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"It is the final proof of God's omnipotence that he need not exist in order to save us."
-Peter DeVries
http://www.progressiveu.org/090204-dont-miss-this-chance
I am sorry, but I don't have a clue what you are saying. In english please? And what on earth is a savant?
I just took the autistic spectrum test but I may be autistic.
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http://www.progressiveu.org/blog/tiffany-southall
Tiffany Southall signing out by keeping you up-to-date.
http://www.progressiveu.org/090204-dont-miss-this-chance
Where do you take that test? If its online, I would hate to think that you would let yourself be labeled so easily. If its at a doctor's office, then all I have to say is this: doctor's often misdiagnose and mislabel "different" out of the norm people as autistic, ADD, ADHD, etc because they feel compelled to find some excuse for your being out of the norm. Well, you seem normal. JUst remember not to be who people tell you you are. Be yourself. People thought enistein was autistic and labeled him as a dum, and a "retard" but thats because people are afraid of what they don't know and the excuse helped them to place einstein in a little box-which is what humans like to do apparently.
My sister has serious learning disabilities, and while I know the two issues are different, I can understand wanting to know your brother. It took me a while to realize that we do know them, just because they can't talk or articulate what they feel, we KNOW them. My sister and I grew up together, and while it difficult for her to express herself, I probably know her better than anyone. I'm not sure if that makes any sense, but I would think that if anyone can understand, it would be you.
Yes, I understand what you are saying. Thanks. I appreciate it. It feels as if I and everyone else who has an autistic family member feel for each other. We don't make fun of autistic kids, we understand each other's feelings even when we can't put it into words. Thanks you guys.
one word: Amazing.
<3
yes, it is amazing to me too. Thanks for your comments you guys. You have no idea how encouraging this has been. I truly truly appreciate you taking the time to help me and comfort me and give me encouragement. Wow, progU feels like a team. We all gang up and help each other through our problems, and we have never even met! Wow.
He is a part of you. He is a part of your parents and your apart of your parents also. You both have a connection, all siblings do, that words could never begin to describe. You might not now anything about him, favourite colours or favourite games, but these are conditional things, trivial, they change and if you tried to keep up on everybody's favourites you wouldn't have time to stop and breathe.
I know some autistic kids, there is a lady in my hometown who has three autistic children and runs a program or company to work with kids who have disabilities. One of her son's is in my grade and the kid is a freakin' genius, smartest kid in the class...when it comes math, science, and music, but he has been officially diagnosed with autism.
I don't know if this will help, but there was an episode of House, called Lines in the Sand that dealt with an autistic kid and this is part of the dialog from it:
CAMERON: Is it so wrong for them to want to have a normal child? It's normal to want to be normal.
HOUSE: Spoken like a true circle queen.
[Cameron looks at House a bit querulously, although she doesn't seem to like the sound of that.]
HOUSE: See, skinny, socially-privileged white people get to draw this neat little circle and everyone inside this circle is normal. Anyone outside the circle should be beaten, broken and reset so they can be brought into the circle. Failing that, they should be institutionalized, or worse, pitied.
CAMERON: So, it's wrong to feel sorry for this little boy?
HOUSE: Why would you feel sorry for someone who gets to opt out of the inane, courteous formalities, which are utterly meaningless, insincere and therefore degrading. This kid doesn't have to pretend to be interested in your back pain or your excretions or your grandma's itchy place. Imagine how liberating it would be live a life free of all the mind-numbing social niceties. I don't pity this kid, I envy him.
I just thought it was an interesting way of looking at it.
Sarcasm is my body's natural response to stupidity.
Buying used books is wrong, it's like buying used underwear, it just shouldn't be done.-Me
Thanks. I appreciate that. It is so true about society drawing a white line around themselves. Thats why in the old days autistic kids were placed in institutions, its terrible. They lived their lives without siblings to love them. I truly think that autistic kids were meant to be geniuses, but something happened to all of them. We thing of them as slow, maybe they are socially. But their minds are brilliant. My brother is slow at a lot of things, as well as socially. But he can play piano easier than normal people. Many times, we were playing a computer game, it got broken and NO ONE could fix it. Until my brother got ahold of it and fixed it. I still don't know how he did it.
I don't know what else I can say besides hold on. I'm sure he can feel how much you love him, just the way I did when I read your blog. Don't give up hope, I believe that there is a soul in there, and even if it is a much simpler soul, it probably is much more beautiful.
Yeah, I will hold on. I have no choice. I have to for my parents, for my sister, for my friends who ask " what;s wrong with your brother", and I am trying to keep the sanity for myself. Its hard on my parents, and we pretend like everything is okay. I never talked to them about this. They can't bear thinking about the future and who will take care of him when they are gone. We talk about Mark as if he is perfectly normal. Well, I am holding on to my sanity at this point. That's why I said silence is deafening. THere's a silence in a family because no one talks about this. My parents don't discuss what a letdown it is to pray for a son your whole life and then have something bad happen to him, the miracle child. They don't talk about the fact that they always wanted a big family but didn't when MArk came along. They don't talk about the fact that my brother is an 11 year old baby that has to be taken care of all the time. They don't talk about their old age, because they are afraid of what lies ahead.
how many I read about disorders or how they are similar, each one is moving and this was too.
thanks for sharing this, it was really a look into your soul and your heart and that is not always easy to write about and let people who are strangers read
I hope somehow some-way things do and will get better--just keep your attitude hopeful and positive and i am sure that is not always something you can force yourself to do but you can try
"Pride is concerned with who is right. Humility is concerned with what is right."
Yes. This is one of the reasons why I have come to love prgressiveU. So often we are bottled up with our feelings, in our own little world. We can't share our feelings with others because they will judge you as weak, or unstable, or highly emotional. Some people just won't understand. But there is something comforting in the fact that I can share this and not have to worry about what people think about me. Its like the anonymous way of sharing your feelings. Otherwise, if you do tell anyone how you truly feel, they can't possibly understand what you are going through. They only feel pity, and thats not what I want. I want to connect with people, to know that I am not alone. I find it amazing that if I never joined progressiveU, I would have never met so many people out there from Michigan, florida, california, etc. in my entire life. The internet is truly powerful in reaching out and connecting lives from all over the globe. I learned so much here, so many new points of view, I just want to thank you all.
I have a twin sister and just the idea of everything we've shared vocally and silently, I'm not sure what I would do in your situation. I feel for you and this blog was moving. It's so cliche' to say that 'everything happens for a reason'....I hope that is true.
JM
You know, at this point I am hoping that everything DOES happen for reason. What other explanation do I have to hold on to? If saying it enough times makes me believe it, I am willing to say it because I want to believe that so bad. I want there to be something positive out of all of this. Thanks for your comments you guys. I appreciate you understanding.
just out of curiosity, how old is your brother?
--stacie
My brother is 11.
okay. well, a lot of people with autism develop language and communication skills later on in life, so maybe there's still hope! =)
just keep being the best sister you can be to him and i'm sure things will work out as well as they can.
--stacie
http://www.progressiveu.org/090204-dont-miss-this-chance
You were right! My brother is talking more and more now! I don't know how it happened really. He started going to a new school where kids don't make fun of him and that talk AT him, since he doesn't usually respond but now he is starting to slowly understand the meaning of words. Last night, he said "this tastes so good!" I could have cried. He probably heard it from other kids at school, and he has a strange way of pronouncing it but just the fact that he talked..wow.
DISCLAIMER: I am not being rude. I'm stating my opinion. No personal attacks are meant. Please give some leniency on how you take my words. imagine me saying them with a smile. ^__^
as of right now he is 29 going on thirty. and sometime i forget whether or not it is autism or down syndrome. i probably should double check. 8P
the post above. question not directed to me 8p
Wow. Do you ever have the same thoughts I have? Like who will take care of him when your parents die? Or how he will understand that they are not there anymore? Are you older than him? Cuz that would be tough to pass away, and leave him to no one. With no one to explain to him what happened.
well his brother is much older, i don't think the same experiences apply.
--stacie
Out of curiosity, what does the 8P stand for on your comment entry?
i basically means for me like du. or like silly when i mess up.
Oh! U get it now! ITs a face. Silly me.
just keep reaching out to him. im not an expert but i do have a disability of my own and have had tone of friends with other types to. i have aspergers, a kind of lower form of down syndrome. it affects the social and learning skills. what im trying to say is that there is always hope that he will grow to be more social. but for now you may have to do the talking.
obviously i don't mean to question you on your own health, but i was pretty sure that asperger's was a mild form of autism, not down's syndrome.
--stacie
Hmmm. I thought that autism and down's syndrome were the same. Is down's syndrome the more severe form? Cuz doctors use both words for my brother.
DS is SO different from Autism. That's kinda sad to group them. They're not the same at all. Autism is where they overload on senses. All of their sense are just so acute than everything overloads them (or is that asbergers?). Anywho, they're still not the same.
And this same progeny of evils comes from our debate, from our dissension; We are their parents and original. -- A Midsummer Night's Dream Act II, Scene I, Lines 115-117
what do you mean they overload their senses? Anyways, my brother isn't exactly autistic he has one of those severe forms of DS, and his behavior is autistic
means that... well... it's hard to explain. You have to experience it. I get it at times, but not like my brother. Though he never was diagnosed autistic. Imagine being strapped to a chair and someone reading a book, another flashing a light in your eyes, another placing strong smells under your nose, and another slapping a rubber band on your hand - all at the same time. That's an overload of sense. It's kinda like where all your senses are in a hyper sense and everything just kinda comes in all at once. It sucks really. The brain just kinda shuts down.
And this same progeny of evils comes from our debate, from our dissension; We are their parents and original. -- A Midsummer Night's Dream Act II, Scene I, Lines 115-117
Oh, okay. That is something totally different then
not at all.
down's syndrome is the presence of an extra chromosome, and it causes specific facial characteristics (you can google image search it and you'll see what i mean), whereas autism, while genetically determined, has no physical presence and can manifest itself in a variety of ways depending on where you are on the autism spectrum, from a very mild form such as asperger's to full-on autism where the person isn't even capable of functioning in society (as far as i know).
--stacie
My brother doesn't have any facial characteristics of autistic kids, but his behavior is. Thanks for explaining the difference. You know what's funny? There was this one doctor who doesn't know anything, he told us that Mark is autistic because of his facial characteristics. You know which facial characteristics? His ears. I couldn't help but wonder "where on earth am I and who is this quack?" His ears are normal, the same as mine. Does that mean that I am autistic too? Anyways, thanks for explaining the difference.
WOw. Thats all I can say. That gave me hope.
That is inspiring
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http://www.progressiveu.org/blog/tiffany-southall
Tiffany Southall signing out by keeping you up-to-date.
http://www.progressiveu.org/090204-dont-miss-this-chance
Thanks for commenting. It means a lot to me. Did you see the other comments I made to your responses?
Let me just say, I feel for you. My brother is not autistic, but he is bipolar and probably something else. My parents tell stories of how he never had a first word, he was late a speaking. But when he did speak, it was complete sentences and in two different languages (he basically grew up in Africa while our parents were missionaries).
But I can tell you, don't give up! I know it seems like a burden and a curse at times. "Why is he my brother?" But things happen for a reason, and you will grow from it. Maybe you will want to work with kids like him. Or find a cure. Who knows. Well maybe you do.
Anywho, just don't give up. Autistic kids are usually really sensitive too. So, let him know you're there.
And it's awesome he gave you eye contact. Really really good.
And this same progeny of evils comes from our debate, from our dissension; We are their parents and original. -- A Midsummer Night's Dream Act II, Scene I, Lines 115-117
Yes, I guess that in a perverted way there is a blessing in all of this. I am so much more sensitive when I see disabled people. I feel for them. I feel for the autistic kids at my school who are ignored every day and made fun of. And whenever it is in my hearing, I make it stop. So often we as humans mock and scoff that which we don't know, what we are afraid of. But this experience has caused me to reach out to others, and I have started working with autistic kids at school by teaching them to play piano using music therapy techniques.
I just want to say thank you again for your comment. It has meant so much to me. I have more research on this and on the vaccine damages, treatments and have basically become more well rounded and aware of this issue. Being in a beauty pageant I now realize that autism will be my main platform and I want to make change in our society concerning this particular area. I am passionate about it and just want to say that you were right: that I would want to find a cure and work with kids like him. Thanks. :)