Fudgie

We've all been through having a close loved one with autism (in jig's case, her son; in my case, both of my siblings). We are in the same boat. It is not meant to be hurtful, I think we just have different ways of seeing the same situation.

I wish people would accept it too. But the reality is that even if people accept it more than they do now, it's a struggle. All the acceptance in the world won't make my sister's speech better, or my brother's social skills better, etc. There are many hurdles and that's why my family has pushed both of my siblings into therapy/medication and both will need to stay on for life for cognitive betterment but that is the nature of the disorder. I could never wish autism upon another family or person. It is very hard for everyone, including my siblings. All I can do is love and support them, which I do.

It's made my siblings' lives very difficult on many levels. I don't see it as a good thing because of the struggle and pain they have endured, esp my sister with just learning how to communicate. If that makes me a horrible person, well, I can accept that. I think my sister having a child, with or without autism, would be a catastrophe. How can she take care of a child and raise a child when she can't live independently?

I feel the same, jigs. I felt from a young age that I shouldn't have kids because my mom had 2/3 kids with autism so the odds didn't look good for me at all. Not to say that it won't be a rewarding life, but it's a hard life. I think we can all agree to that. The best thing I can do is spend time with my family and be there for my sister.

I wish I could remember the name of the article but years ago, scientists came out and said that autism is very likely to have an epigenetic basis. Epigenetics is the word for how things that the mother is exposed to, both WELL before and possibly during her pregnancy, may affect the genetic expression and development of the fetus. Usually with broad-reaching implications. I think I first read about it in regards to stress/famine versus abundance and how mothers were exposed to such conditions during x periods of their life were more likely to have children with x conditions. They accounted for other variables too. I believe there are environmental factors at play that we don't completely understand. Not to say that the "organic, non-GMO, chemical-free-drug-free everything" crowd is right. I don't think they are. I think there is a lot that we don't understand and maybe will not for a long time. I am fairly certain my sister will never have children (she is 23 now and is like an 10/11 y/o, no sexual/romantic desire or development whatsoever) and I think that's a good thing because of her dependency in general, because she wouldn't be able to care for the child. She can't live independently and will never be able to. But that's neither here or there, she can't stand the idea of kissing and things like that. I will take her in when my parents are older/gone. I think I would be okay with her having a relationship but I would have to screen the guy and I would make sure she's on effective birth control. I know my parents would do the same. I have no idea about my brother. He's really stunted sexually, he's like maybe 13 in that regard. I don't really know what will happen with him. I think if he gets lucky, maybe he can find a woman who will bear the majority of child rearing work because while he's very good at what he does in academia, he struggles with things at home. That's only if he gets out of his current asexual stage. Which could go for many more years. Who knows. As long as they are happy and not putting themselves into bad situations (ie children when unable to live independently whatsoever) that leave them vulnerable. I worry about my sister a lot. Maybe a little about my brother but not as much. He's a smart guy and very cautious.

"set it on fire" LOL!!!!!

I didn't pay for OKC but if you want to get an idea of who has "liked" you, turn off anonymous browsing, keep visitors on. That way, you can have an idea of who has liked you: if you get a like around the time someone has visited your profile, there's a decent chance they "liked" you.

I think OKC is geared more towards a younger crowd. Not a bad thing, IMO, but I would think that anyone over the age of 35 is going to have some trouble on there. When I was on there a few months ago, I did put my acceptable age range as 25-45. I meant it, I've dated a bit older so I was okay with doing it again. However, nearly all of the search results yielded people up to age 30, maybe early 30s, and that was it. I modified my search a few times to include only older (35+) and very, very few men remained. So there really weren't that many older guys on there. I think I got a few messages from 19/20 year olds. I didn't answer, made me smirk. I'm sorry, maybe it's mean but all I could think was "wow, you can't even drink yet". Not that I'm much of a drinker, I don't really go to bars, but I'm 25, I'm over the days of having underage friends and being like "Oh we can't go to x, y, z because they are all 21+ places". No, not my thing,

The college that I went to, in the 70s and 80s, used to teach that autism was caused by "refrigerator moms". That was a question on a test back then! One of my profs was older and he remembers teaching it. That's what was believed in the scientific community at the time. Of course, he knows it's completely false now but when we talked about autism, he always brought that up as an example of how you can get things really wrong.

I don't understand how an adult, or anyone really, could do that. I've gotten my skin stuck in zippers, particularly my loose post-surgery belly skin and it HURTS, it hurts so much. Your son must have been positively freaking out. How can anyone do that to a child. That just breaks my heart. I had no idea he went throug hthat Vic.

Oh that just boils my blood!

Just makes me really sad. I would have to suppress the urge to pummel the person who tried to take advantage of my siblings. Sort of why I'm the one who volunteered (and am in the will) to oversee my sister's finances after my parents are unable. I don't want some snake to come in and steal her money or abuse her. I'd sooner go to jail for murder than let that happen.

I've often wondered if autistic individuals end to suffer from this. Again, just a thought, I haven't read anything about it but I've observed it.

Proprioception is how your brain "knows" where your limbs are at all times (like, what position they are in, etc), even if your eyes are closed and/or you can't see your limbs. I notice that my sister struggles with this with physical activities. She's kind of clumsy at times as a result. This was my own personal observation. I don't know if this is common with those with autism but I've seen it in her.

Does your son have impaired proprioception?

Yeah I hate talking to my brother on the phone, he's pretty awful at phone conversation. My sister has gotten better only thanks to that guy.

Over a year ago, my sister became friends with a guy. He's a bit older (30s) and he has mental retardation. They went to the same job skills program together. They are still friends and talk via telephone almost everyday for a long time, just about different topics. I'm not a fan of him (he's always wanted to date my sister but she doesn't want to date him or anyone, so I worry) but her verbal skills have improved 10fold, I just can't be against the friendship! He calls her on her cell phone and talks to her about a variety of different things, share stories, etc. So I'm actually really glad now that they are friends even if it annoys me that he tends to call at bad times.

That's so awesome! Progress! I had a talk with my sister recently about OJ Simpson and Casey Anthony (her: "She moved to Mexico!" me: "What?! I didn't know that!") and how people get away with murder when the court doesn't find them guilty. This was over 4th July weekend and I'm still stoked, still talking about it, told my parents and others. "I talked to my autistic sister about court cases! I can't do that with many 'normal' people!"

That's awesome Vic! What did you guys talk about?

Oh yes, both of them really. I wish everyday that they didn't have autism so their lives could be easier, they could have other relationships, and they wouldn't be limited like they are now. Breaks my heart still and I have trouble talking about it without tearing up.

To us, stimming = something wrong with medication. If she's on the right dosage, she won't get anxiety and she won't stim, which is good because she's calmer and doesn't feel the need to stim and will fill her time with other things, things she likes or things that need to get done, like all of her animal chores. I don't think stimming is "weird" but I think it can be indicative of an issue, as it was for my sister. She doesn't stim anymore though, not with meds. Everyone in my family, including my siblings, sees autism as a disorder, something that's not their fault but it's not something great either, so it's not harsh for us to say that. No one takes offence, heck even my sister says it to me when I'm doing something that she perceives as autistic. But hey, different strokes for different folks. My brother finished college and with some help, should be fairly independent and my sister can hold down a full time minimum wage job after she finished her job training program for autistic/MR folks. Both are properly medicated, engaged, and happy. It's even better than what we thought was possible many years ago. Had my parents followed these organizations that reject treatment, my sister wouldn't be able to talk and she'd be stuck in the autistic home that the district wanted to put her into, I know that to be true.

I was reading more earlier, about opponents against ABA therapy. I love ABA therapy. My family credits it with bringing my sister "out of the fog" and getting her much more functional and able to talk, instead of sitting there in silence stimming herself by clanking things around. She has been in ABA since she was 3-4. We didn't know she had autism at the time but things weren't right so she got thrown into therapy and medication. My brother followed afterward. We had therapists in and out of the house around the clock. When she wasn't in school, they were there. I still remember that. My parents enlisted my help from an early age, to watch her and see if there were changes in her behavior as her meds were fiddled with. She was put on some drug and welp, there we go back to stimming again. Just sitting there stim stim stiming. I was about 6. I remember going to my parents and saying "she's tapping again, this medicine isn't working" and she got her dosage fixed and the tapping ceased. I don't know where she would be without it, I truly don't. My family is so odd. We do this thing, if someone is freaking out over details or being repetitive, we say "stop being autistic". My sister tells me to "stop being autistic" if I repeat myself often. I think the autistic rights groups would hate us, truly. The local medical community considers my sister to be a success story, a testament to the power of therapy and medication. She will be on meds for life and will always need some guidance but it's okay. My sister did get to talk to Temple Grandin though and she thinks she's a cool lady, so that's good I guess.

Sorry to rant/crap all over your journal, Vic. I read that article and my blood went hot.

I think happiness is a good thing. My sibs are happy...now at least, they didn't used to be all the time. It was a long road. My brother will be mostly independent (with some help) and my sister will need help. Truthfully, if she were more dependent, I wouldn't be able to watch over her after my parents are gone. I am happy being near her/living with her, seeing her everyday, overseeing her finances as she makes purchases, reminding her of things, and helping her plan long term, but she does the day-to-day and I am very happy about that.