I don't want my son to live
Moomingirl
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Joined: 19 Mar 2013
Age: 50
Gender: Female
Posts: 7,084
Location: away with the fairies
Please realise Movik, that this is where we come to share the troubles that most people don't understand. So sometimes you're going to see some sad things, because often it's the only place we feel we can talk about it.
But remember, everyone has troubles and sad times. I'm pretty sure not one human has made it through life without some kind of pain, Aspergers / Autistic or not. Try a website designed for people who have lost a loved one, suffered depression, been in a terrible accident, or suffer from chronic pain. Any of these could happen to your son, you can't protect him from everything.
Yes, sometimes life with Autism is hard. But if only people would try to understand, it would get easier. There is a famous quote out there (sorry, I can't remember at the moment who it was by) that said "I don't suffer from Aspergers, I suffer from other people". So true. We spend our whole lives trying to adapt to things that NT's don't even understand, if they could adapt just a little to us it would make all the difference.
Just because there are a lot of difficult subjects on here, it doesn't mean we don't have meaningful lives. You can give your child all the support in the world. Be glad that he is only very young, and awareness is getting better all of the time. Some of us grew up before a diagnosis was even available, and spent decades trying to fit in. With the right support he will live a great life, don't write him off before he has even started.
If AS is so bad then why do the majority of us say we would refuse a cure? My childhood was a mental mess at times however since the Dx came to be when I was 4(wait till about 11 for my Dx), I had to like meny in my age group go through the issue of being the mis-treated then being trailblazers, I was the 1st for a lot in life, now a days things appear better. I do lots of great things in life that meny NTs only dream of, I do have a few friends who we value each other very much.
Since you read the is AS a curse thered in the general page I hope you read my post as I tryed to put the dissabillity of asperger in perspective with people I know and have known, in reallity its FAR from the worst thing that can happen. Your so lucky you have a special child who can maybe amaze you in ways you never dreamed possible, just let him prove them and you wrong.
Last edited by rapidroy on 28 Mar 2013, 12:33 am, edited 1 time in total.
Yes, his life is going to be hard.
Life is hard. If life is not hard, you are very lucky, very psychopathic, or not living very much.
Harder?? Maybe. Hard in a different way?? Probably.
You can't protect him from that. I mean, you can, but you won't be doing him a favor if you try to protect him forever.
A three-year-old?? Needs a little risk and a lot of protection. A five-year-old?? Needs a little more risk, a little less protection. An eight-year-old?? They still need your love and support, and some protection, but they're getting big enough that you'd better let them fall, and hard, while they're still close to the ground. A twelve-year-old?? If they haven't burned their fanny good and had to lick their wounds a while, they're missing out. They still need love and guidance and support, and some protection.
Please remember that there's a lot of age variation even in NT kids. Add Aspies to the mix and the ages vary more. But the point is, as kids mature, they need less protection, different guidance, and more opportunity to fall. Within some form of reason. The as*hole that lets their sixteen-year-old daughter go to a house party with friends... well... don't get me started. That's another thread.
An eighteen- or nineteen- or twenty-two-year-old?? Honey, they don't have to move out, but that bird's gotta fly sometime. Absent major disability or heavy developmental delay, it's time to be fluffin' those feathers.
One thing my father did I do not any longer agree with, was pushing me out the door at 18. It wasn't, "I'm done with you." It was, "You can come home any time. Come home often. But-- get a dorm room, get an apartment, get a trailer. You're an adult."
I wasn't. The little bird was young and scared and terrified, terrified, terrified to be alone-- and lacking in the skills and volume of social support that would have protected her from doing stupid and dangerous things for companionship. I'm honestly lucky that I married a good boy with issues who grew into a good man with issues rather than a bloodsucker or a psychotic abusive son-of-a-bitch. I would, when I was 21 years old, have accepted either just to feel like I wasn't all alone in this mess called adulthood.
I flapped, I fell, I flapped some more. I hit the ground. I got up on a branch, jumped off, flapped some more, fell. Broke some bones and hoped a fox wouldn't eat me while I waited for them to mend. I lived. Got up on a branch, flapped, fell.
It was painful to live, and I'm sure it was painful to watch. It could have been less worse if I could have come home every few days to a safe place where I wasn't alone. But. Eventually, I flew.
I don't very often fall out of the sky any more, but I'm still not what I'd call a proficient flier. Damn those picture windows!! !
The upshot of this-- he is going to get hurt. It is going to be hard. There are going to be times that just absolutely deeply f*****g suck. If all goes well, he might grow up to be an adult that needs you-- or someone-- more than most adult children. Would it be a tragedy to have him be an independent adult who calls home often?? Would it be terrible to have him be grown up-- maybe even married with kids-- but still quite close??
Selfishly, I kind of hope at least one of my kids will come to that place. Independent, but still close. "I may be grown up, I may be a parent, but I still need my mommy. I could survive if I had to, but I still need my mommy."
I'm sorry I don't have better advice. I'm about where you are at, and an Aspie-bird to boot. We may be different birds, but we seem to be flapping toward the same nesting grounds. Maybe we can migrate together a while.
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"Alas, our dried voices when we whisper together are quiet and meaningless, as wind in dry grass, or rats' feet over broken glass in our dry cellar." --TS Eliot, "The Hollow Men"
Last edited by BuyerBeware on 27 Mar 2013, 11:08 am, edited 1 time in total.
Tell us some more about the kid. In lots of agonizing MommyDetail. Cry, brag, carry on about milestones and struggles, hell post pictures. Feed the Aspies data!! !! !! !!
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"Alas, our dried voices when we whisper together are quiet and meaningless, as wind in dry grass, or rats' feet over broken glass in our dry cellar." --TS Eliot, "The Hollow Men"
My son is very sociable and affectionate, and he doesn't look autistic at all. His behaviour is also "normal". No major tantrums or meltdowns, he likes to spend time outdoors, bushwalking or going to the swimming pool... The only give-away is his fixation on ceiling fans and doors. And, he is very cute.
Does it really feel like a bubble for a person with AS to live in this world?
the thing you must keep in mind is none of us have ever had the chance to live as NT so its hard to compare, I wouldn't go to far on the bubble thing though, at times maybe however its still the same world, same people etc. we all live in we just view and interact with it a little different.
Sounds like he is a wonderful child, you should feel lucky hes yours. Take care of him, nuture his affection and he will one day take care of you.
Moomingirl
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Joined: 19 Mar 2013
Age: 50
Gender: Female
Posts: 7,084
Location: away with the fairies
Well, if your son 'acts normal' then he has a good chance of making it ok in this world. It's the obviously different ones that have a harder time in this world - Aspergers, gay, different race, or whatever. I don't even understand how they can diagnose at his age. My nephew had a fixation on vacuum cleaners when he was three. He's NT, and grew out of that one
I wouldn't say it's like living in a bubble. When I explain it to people, I compare it to living in a foreign land (or planet - look at the name of the website here!). Some of us learn the language and customs almost well enough to pass for native (until we come out with some epic fail), some struggle more, but it doesn't ever feel 'natural' - it's as if you are always concentrating, trying to translate things in your head, trying to remember the 'rules', and what you are and aren't supposed to do or say. At the end of the day you go home exhausted from all the work, and often it just feels easier to stay at home where things are predictable and safe. I always say it's like I'm normal, and the rest of the world is crazy.
Love that!!
It seems to me you are not focusing on your son's potential pain, but on your own pain right now. Your pain will pass, it's up to you how quickly that happens. It may help you to focus on the fact that no one has any guarantees in life, no one can be sure how a child will function or learn or adapt. It may also help for you to talk to someone one on one regarding this reaction. Look around you at the world, there are many children who truly are facing only suffering in life, people of all ages who have much suffering. Try to count your blessings and focus on what can be, not all the negative things you are thinking about. Maybe read up on how many people have some sort of difference and lead great lives. Above all, please understand you are focusing on a very small part of the situation and your feelings will pass.
Movik, you may have not realised it and it may have gone unoticed however you have made one huge positive step in the right direction, its your getting/seeking your advice from those who actually have Asperger's Syndrome and have already been down this road before. Thats a good thing that I hope you continue doing becouse theres alot of garbage to be read online, poor doctors, teachers and special intrest groups who know nothing about actually living with AS yet are happy to steer you in the wrong direction out of pure ignorance anyway. Most of the real hard mental pain I have lived through as a child was becouse of this and not the symptoms AS itself, you have the power to help him avoid this becouse of your knowage and his age.
As far is AS being undetectable at age 3, i'm suprised they could pick it out that young and would be interested to know how they figured him out. As for myself I can recall showing most of the signs clearly at preschool including the hallmark object lineup and social interaction issues. So a really good doctor can pick up on it I think.
I had what I call an "unbonded relationship" with both of my parents. And, that was due to my autism. My autism was not discovered until long after both of my parents had passed on. So, the only thing they knew, was I was this odd, distant kid. And when I grew up, I was an odd, distant adult. My mother was extremely uncomfortable with me to the extent that she set up numerous situations that would've caused what would've appeared to be an accidental death. Twice, I almost died. And, I carry a long scar from one of those events. That said, I've had a good life and I've been very successful. I'm glad I didn't die. I busted my butt and got several degrees including a Bachelors and a Masters in Computer Science. I've got a lot of Fortune 100 companies on my resume and I've been fully productive. Interpersonal dynamics made things tough at times, but I've had a good life and I will be very glad to live longer. Challenges and facing those challenges, whether successful or otherwise, provides experience and perspective. For my experience, your son will probably suffer little in a direct way from his autism. The worst suffering and the greatest challenges will come from others. If you have further questions, I would be to chat with you.
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High-functioning borderline Asperger's
AQ: 30
Aspie score: 83 of 200
Neurotypical (non-autistic) score: 115 of 200
Both Aspie and neurotypical traits
Autistic characteristics: No communication by facial expression or tone of voice. Direct eye gaze.
autism is only autism with respect to the larger norm. which is to say it only means anything because most people don't have it. the misery doesn't come from the neurological wiring (a reality incapable of making statements exclusive of the gestalt). it comes from how that wiring is framed within the context of common society and whether difference - of any sort - is sanctioned, embraced or derided. i'm not predicting any grand paradigm shifts: if history be any kind of oracle human nature will always bear seeds of intolerance... but i do think children diagnosed now will fair easier than i did growing up, just by virtue of living in more informed and compassionate times. beyond that: the mass delusion that autistic kids grow up to be anything other than autistic adults - no matter what their capacity - isn't a delusion than can be maintained for much longer. its a lovely, little fairytale but many autistic children are coming of age. eventually people are going to wake up (and in short time, i might add) to the affront that is the utter absence of adult services and be thrown into a belated, but much needed action.
already, your son has more options than he may have had even a decade ago - and in another decade or two, he'll have many more than many of us have now. the path to his adulthood wont be toil free but he'll likely experience less resistance - most especially if he has you to advocate and support him along the way. but beyond that: regardless of what the outside world does in response to his autism, or neglects to do, he is a valuable human being. how difficult or easy ones life is predicted to be is not a measure of its worth - no more than it might be a determination of its absolute trajectory.
lastly, i'll say: don't let your fear for your boy, engulf the fortitude of your love.
Last edited by shortcircuit3 on 30 Mar 2013, 11:36 am, edited 1 time in total.
Yes, and doubtful we live in a bubble. Perspective is the key issue and why you might want to learn much more - you're missing the picture. Anyway, I did send you a PM, if that's OK, since there is other information that can help, I know.
Lots of WP posts are from Aspies (including yours truly) who've been hurt really badly but it's not the autism/AS, it's how we can be treated as a results. But the potentials far outweigh the risks, if you let it.
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The ones who say “You can’t” and “You won’t” are probably the ones scared that you will. - Unknown
That's a moot point. To clarify as an open-ended question to any given (neurotypical) individual: Can you say your life is happy due to who/what are you?
Quite meaningless. Instead, if one has talents or special qualities, use it. Will others be accepting of that? Maybe, or not. I cannot hinge my happiness/success onto another's contrived judgements. Really must move forward then, yes?
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The ones who say “You can’t” and “You won’t” are probably the ones scared that you will. - Unknown
With that said my life is fairly fulfiling, I do enjoy the majority of it and while meny NTs I have known have it better, meny do not, I can and do make efforts to improve. Above all I would not trade my AS for being NT if given the chance, overall I feel pretty good about who I am and my abillity to be happy in life and i'm thankful for the abillites AS has given me, meny do help make me happy. Meny days will be good, some really great and others horrible, thats life. I know I want to live and likely so does your son.
Last edited by rapidroy on 30 Mar 2013, 6:00 pm, edited 1 time in total.