Not a cure, just appropriate support

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That is soooo funny

I want James bond gagets and austin powers mojo

Bond is cool... I really hate Austin Powers though.. I really don't get the funny...... I saw the first one, and left it alone after that.

I liked Mcgyver but some of them were too far fetched, like the time he arc welded a con rod back together with a battery and a nickel

I get exhausted reading parents who say things prefaced by "the school...." and "the teachers..." and "the bus drivers..." and "the institution where I sent my son or daughter to do x, y or z". I really do. I home educate my child. It's a giant sacrifice. I realise everyone has their "reasons" why they use "the school...." and why they can't do what I do, etc, etc., but it's worth a thought. There are a multitude of people who home educate autistic kids. You could be one of them. Of course then you're the one who fails your own child, which is a super huge responsibility that even I would often rather blame on "the school...." and "the teachers..."

I'm also anti-cure camp. I'm pro-advocacy and damn committed to making sure my son has the best chance at life by any means necessary. I cannot imagine what or how I would feel if my son was non-verbal. I don't think I would want a cure, but I would bust my arse looking for and doing whatever the hell I could to help him to be the best person he could be. Like this mother did. http://www.halo-soma.org/main.php?sess_ ... bc3efc67cf

I hope you don't hold me under this blanket. I fall through cracks. I would love to home school

I don't think so, neurotypicality is not a disorder, Autism by definition is. That's the way I understand it.
When my son was 2.5yrs old he had about 50 words, he imitated (pretend to make sandwiches, dance to wIggles and copy their actions etc) and he pointed to things. I have it on video. All gone. He now functions at the level of a new born baby in some areas. I have not heard him speak in over a year, although I have dreams where he talks to me. Yes I would like those things back if it was possible.
You tell me? Is putting him back to the way he already was changing him of who he is? It might be changing him of who he has become, but It's certainly not changing him of who he was is it?!
Yes I'd be scared of changing him even that much because I love him the way he is, but I want him to be able to live in the world and look after himself one day. I'd do it.

What are you doing to help him learn to reconnect and communicate?

PECS and ABA to throw out some acronyms. The PECS is great it has given him a way to make requests, which almost exclusively is food and drink at the moment. The ABA has taught him purpose to things like the word look for getting his attention to something, and been a way to get him to do things like bring an item, get in a car seat etc.
He spends a lot of his time just looking at objects, often two or more of the same or making triangle shapes. He loves Lego for example, but just for the shapes, not to build, although he used to.
Socially he seemingly has no interest in children, but he loves cuddles and tickles and rough housing, he seeks this out.
But it does feel like holding onto sand slipping through our fingers.

Did you check out the link I posted above re SOMA? I'm not a big fan of ABA. I think if someone put me through ABA I would probably regress a few years. I know there are folks who have a "gentle" approach to ABA, some of the things I have heard regarding "gentle ABA" I did with my own son, but the whole ideology of a Freudian-based, Pavlovian style "therapy" sort of makes me nauseated to be honest. Children aren't puppies, etc.

My son loves Lego but just for the collection thing. I am trying to get him into the idea of collecting precious metals for the same cost of Lego kits. Gold nuggets for $100-$170 take up a lot less space.

Children with DS are more normal than abnormal; they're delayed in development both mentally and physically, but they don't learn to speak and then suddenly lose that ability. They may even pick up a stim or two, but they don't develop so many stims that it becomes the central part of their daily activity. All of the characteristics that my son displays are attributes of autism, not Down Syndrome. Even his DS peers are beginning to wonder what's wrong with Eric.







You are entitled to you opinion, but it doesn't negate the reality that my child DOES have it worse. There is a marked difference in the functioning of an Aspie and that of a person with full-blown autism.




I don't care about the stims. I don't care if my kid vibrates with energy all day long, I just want him to speak, I want to be able to communicate with him on a meaningful level. You can't really say that Autism gets better, because for some people, it doesn't, for some people it gets worse.

I see a lot of parents attributing their children's gifts and achievements to autism. How do you know that he wouldn't still have these gifts and strengths if he was NT? Plenty of NTs have made huge contributions to science and technology and human advancement as a whole. Gifts and intellectual strengths are not exclusive to autism. I think we do a disservice to our children to give all the glory to the autism.

A cure should only be used for those children who's parents feel that it is in their child's best interest. But it feels as though some people are trying to make parental choices for children that don't belong to them. And what about those with autism who are grown adults who can make choices for themselves? Are we to say that because there are some who embrace their autism, there will be no cure for those who don't?? Who has that right??

In all honesty. I think this debate is pretty pointless, because I believe autism to be a genetic disorder that cannot be remedied in a lab. I too think that if science and the state has it's way, we will see the development of prenatal screenings as our "cure", and I'm not on board with that at all.

But hypothetically, if there was a chance for a cure, I would want that for my child.

I don't feel that autism is part of my sons identity, I feel as though autism has extinguished many of the things that made my son who he was BEFORE the autism set in. Autism has stolen fullness of life from my son. Autism has made my son's world very small. There are so many things in this world that my son cannot enjoy or utilize for the expansion of himself, and one of the main tools for human expansion is speech. The ability to express your desires, and wants and needs, to convey your ideas to others is vital to the expansion of your being.
It's as if someone went into our son's minds and began closing doors and turning off lights.

Curing our neurotypicality would only serve to exacerbate the problem. Removing our ability to communicate isn't going to facilitate higher understanding between us and our children. You will just have two people who have no communication skills.

I don't think any of us should fault parents in certain difficult situatins for wanting a cure.

It must be hard enough living on a moon that spins the wrong planet.

I think that aspies have a lot to offer the parents of kids that cannot communicate, and I want those parents here for that reason.

But we can't expect them to stop dreaming of something different for their kids.

I think it was Caitlin who expressed well early on why we're anti-cure, the science side of it. I think sharing that information is appropriate, and then it should be done.

I read the stories of our moon marooned parents and all I could wish was that I had some way to offer a giant hug, some way to tell you that inside your child's head its all OK, to let you know his life will be fine. But I can't promise anything, despite all that I've advocated on this forum.

That's because the definitions are written by neurotypicals. If they were written by auties, it would likely be the other way around.

Back on the original topic, your comment got me thinking. Why do organizations like Autism Speaks focus on cure rather than on accomodation, understanding, and respect?

Unfortunately, I don't think it's just chance. If you think about it, the parents who still have faith in their child and believe in that child's potential are likely to be spending their extra money on that child. That leaves the ones who have given up on their child to give to the organizations. They're angry at the universe for not giving them the child they wanted, and they are trying to help other potential parents avoid being in their situation.

And looking at it from that standpoint, it makes perfect sense to try to develop a simple genetic test that could help parents avoid having an autistic kid, because that's what those parents wish they had had.

So what makes sense for parents who like their aspie/autie children and don't view them as a burden? I think it would be organizations that could directly help their own children.

One thing I think could help a lot would be a school designed specifically for aspies and similar auties, without just sticking them in with people who have random learning disabilities. The social and communication difficulties are mostly difficulties with neurotypicals, not with other aspies. Having a school where most of the people thought the way these children think could help a lot.

Perhaps with the current school choice movement, some such schools will start to appear.

Good god.. I wish this could happen... so much.