Does anyone belong to other autism support groups?

Post Reply New Topic

I originally found a yahoo group from where I live and they were wonderful. Really helped me with where to go and what to do with my kiddo's diagnosis...HOWEVER, lately I've come to think that they are just overboard in trying to "fix" their children. It's not that I do not believe my child should learn to talk, and that I should not give him any therapies, but at some point, I say enough is enough...and I can't see myself putting him through hours and hours of therapy every week. Right now, we only do speech therapy, plus homeschooling...I created a "Life is Good" room for him with only music (Classical) and some mats on the floor a water fountain and some musical instruments. This is where we practice his speech therapy assignments and try to teach him to relax, to take turns, etc...

I wrote a post one time telling them to look at themselves (probably not very smart of me), that I had taken a look at myself and that my son wasn't much different than me...and told them what I went through and how it felt to be constantly changed from class to class, etc...and they just didn't seem to care...it's like they are just 100% focused on fixing their kids...even the ones who's kids are AS/HFA...

Anyway, just wondering...

I joined a support group recently and probably 1/3 of the Mum's have HFA/AS.

None of us are trying to 'fix' our children - just keep their stress/anxiety levels low so they can be happy and reach their potential.

The first thing that happens at our support group is one Mum pulls out a large packet of chocolate biscuits, and the next Mum pulls out a bottle of wine.

Maybe you need to find another support group!

Good luck.

Helen

Are you looking for an online or offline support group ? Offline, it depends on where you live. Haven't any personal experience with that.
Possibilities you could consider:
Online, I've heard of "parent to parent" groups in some of the U.S. states.
http://www.partoparvt.org/
is the one I've bookmarked (for state of Vt.), but perhaps from that link you can find out if your own state (dunno' if you live in USA) has their own local group ?
Another link someone IRL (a woman with an adult son dx'd w/AS) provided me with:
http://www.autismweb.com/forum/index.ph ... 21e31ad2cc
Also, in general for ASD, I recommend the forum created by Sophist (a member here at WP), called Gestalt. There are only 200 members, more women than men, & some have dx'd children.
http://asdgestalt.com/
It might be of interest to you, might not-but no harm in checking it out.

Join a support group? No, I can't say that I have. This is pretty much all I have, and I mostly use this tool to give input.

Of course, I'm somewhat anti-social, and I can't stand to hear someone complain day in an day out, but then never do anything to fix their problems. I really cannot handle the negativity. Also, I don't believe there is anything wrong with my son...he's just wired differently, and I guess my job as his mother is to help build his strengths and sort out his weaknesses.

Not a parent of anyone with AS, but if I were, the closest such group would be just across the state line in Lawton, OK.

The nearest adult Aspie group, as far as I know, is in Fort Worth.

Tim

Um, no, it looks like we need to move to Australia!

Support groups here in the States are often about crying and blaming the World. Doesn't matter what the support group is for. It's really hard to find people that just want to get together. It's like we need to start a club and not use the word "support".

We have an excellent support group here! They bring in speakers from time to time and we all talk with each other about what we have been going through lately and everyone gives out advice etc. Sometimes we have guest speakers or whatever. It has been a huge help to me, especially when my son was first diagnosed and I was still a little "shell-shocked"

Man, I'd like to join the wine and biscuit group! I don't get to our off-line group very often because of scheduling, but we have a fairly mixed group. There are those looking for "the big fix" and those just looking for an ear to bend. I've learned to filter the things I'm not interested in and pick up the tips I'm looking for. I definitely would not fit in with an entire group of nothing-but-whiners. Winos, sure, lol.

Being from Texas, we would have to change this to queso and Margaritas!! !! Ole!

Thanks for the links to other groups. I actually don't live in the US, but maybe I should just start my own at this point. I think it would be nice for my kiddo to have other kids to play with, etc...but I also grew tired of being told "NO, your kid should be in speech therapy 5 times a week, psychiatric treatment, occupational therapy, physical therapy...music therapy..." It's just a bit too much, at least from my viewpoint.

I'll check into some of those others sites.

Yeah, not only do I disagree with the therapy fervor, but it comes off as a competition to know as many brand names and acronyms, with the requisite name dropping thrown in for social anxiety. Your ignorance of any of these means you "just haven't done enough for your child!" [/headbang]
They even say that when you explain you don't believe in curing/therapy.
"Well, I'll do whatever I can for my child" As the if expensive/gov't funded/brand named/acronymed Thing is the Cure All.

The sad thing is that when and if we ever start talking about schools and IEPs, we all share a common ground and ideals. But we just don't seem to trust each other to maintain that or target education issues.

Yes, I agree 100%...Actually, our the neighbors behind our house have two kiddos. We actually built a fence between our yards and left a space open for a gate (we still don't have the gate), so that our kids can come and go between the two backyards and they often play. There's also a boy who is friends with our neighbor's kid who has come over and my son has also played with him. However, that boy (who lives across the street) has a brother with autism. I was really excited to meet the mother as they live so close in the hopes that our kiddos could play together...well, was I in for a HUGE surprise...She just went off on me for homeschooling my child, for only having him in speech therapy...she said she got lawyers involved and after a "couple of years fighting" the school district, her son goes to a private school for free. He is in therapy 40 HOURS A WEEK! She told me my son NEEDS to socialize and that I need to send him to school...needless to say, I asked her where her son was, since I have never seen him and told her that she was welcome to bring him over to play in our yard with the other kids, and mine...to which she replied, "thanks, but he doesn't leave the house...we just can't let him out of our sight and he stays home all the time"...WELL!! ! No wonder her son needs to go to school to socialize...Needless to say, that was about 2 months ago and I have yet to see her poor son, whom she has locked up in her house...

I mean, I understand that you sometimes don't go everywhere, because not everyone understands the condition and some people are very cruel and you attempt to protect your kids and/or at least, not take them places where people might make their life miserable, but knowing that our child is the same, she has no interest in him socializing with neighborhood kids, only therapy 40 hours a week...sad, very sad.

Yes, I agree 100%...Actually, our the neighbors behind our house have two kiddos. We actually built a fence between our yards and left a space open for a gate (we still don't have the gate), so that our kids can come and go between the two backyards and they often play. There's also a boy who is friends with our neighbor's kid who has come over and my son has also played with him. However, that boy (who lives across the street) has a brother with autism. I was really excited to meet the mother as they live so close in the hopes that our kiddos could play together...well, was I in for a HUGE surprise...She just went off on me for homeschooling my child, for only having him in speech therapy...she said she got lawyers involved and after a "couple of years fighting" the school district, her son goes to a private school for free. He is in therapy 40 HOURS A WEEK! She told me my son NEEDS to socialize and that I need to send him to school...needless to say, I asked her where her son was, since I have never seen him and told her that she was welcome to bring him over to play in our yard with the other kids, and mine...to which she replied, "thanks, but he doesn't leave the house...we just can't let him out of our sight and he stays home all the time"...WELL!! ! No wonder her son needs to go to school to socialize...Needless to say, that was about 2 months ago and I have yet to see her poor son, whom she has locked up in her house...

I mean, I understand that you sometimes don't go everywhere, because not everyone understands the condition and some people are very cruel and you attempt to protect your kids and/or at least, not take them places where people might make their life miserable, but knowing that our child is the same, she has no interest in him socializing with neighborhood kids, only therapy 40 hours a week...sad, very sad.

She blasts you for homeschooling and then turns down the invite?! whacked, I just don't get that mentality.

The neighbor seems to me to be embarrassed by her son's inadequacies. She is trying to fix him to be "normal." What a shame.

I can't say I've found our local support group very "supportive". Its suppose to be for families of autistics as well as autistic adults. They want adult autistics to join so they can USE them to do presentations where the group ends up making many thousands of dollars off the backs of Aspie adults. But they never do anything with that money to help the adult autistics like sponsoring some kind of occupational therapy or something as none of us have gotten any help.

Actually they do nothing with the money but buy books and to use it to send people to autism conferences. They look at me like I was alien for suggesting as a group we need to socialize, have picnics, etc with the money because autistics and their families tend to get socially isolated for various reasons. We don't even have summer picnics like the other state groups do. They are pathetic!

As for the usual meetings its always the same old thing -parents come in to whine how their life has been RUINED because their child is autistic. They come to complain about their children and about the school system. Occasionally the discussion does go towards the supplement happy curebie topics, but 60% of conversation is about IEP's and demanding free therapy for their children through the school system and 40% is complaining about how bad their children are. I find it all humorous as an adult with Aspergers because over half the moms and dads there appear to be on the spectrum themselves.