SWOT - It's something I've wondered about also, especially in terms of the general parenting forum. I mean, my gosh.... the last post was on Thursday in there. It's now the wee hours of Monday morning. That would have been unheard of 8 years ago.
I can only give you my opinion. I'm a little hesitant to do so because we're not as soft a place as we once were, but... here goes.
I was referred here by T's 2nd grade teacher in 02/1999. I'd had some experience with listservs because of Boo (who has severe CP for any newbies), but a forum was a new thing for me. I was member #358 or 359, and I think ?MommaBear? handed the reins over to Abby right around the time I got here.
We'd already had a couple of hospitalizations with T. We'd been seeing tdocs/and psychiatrists for 4 years by then. He was a total wild child - completely uncontrollable rages, behaviors that were embarrassing to admit to because they were so utterly outrageous, violence that was over the top, crawling around classroom floors while growling like an animal, and pretty much not a darn thing good old Dr. Spock ever imagined. And I came to the forum and literally cried as I started reading posts. Tears of relief and possibly a little bit of joy. Because here was my tribe - parents who were most obviously *not* monsters who had caused their kids' problems (because we've all heard that from some so-called professional: "It's your parenting skills"), parents who were probably a little nuts because they were dealing with G F Gs, but parents who got it, who welcomed me with open arms, who didn't judge me because my kid was breaking windows out of my home and kicking policemen and telling the principal to f*** off at the ripe old age of 6. And there was *practical* advice, most of which I cannot remember due to my perimenopausal fog, but I do remember Pico listing out the natural consequences for behaviors she had in her home. Natural consequences. Practical advice on how to survive/contain/deescalate a kid who had turned into a whirling dervish because I'd had the *nerve* to tell him to wash his hands after peeing. Nuts and bolts stuff.
I rarely go into general anymore unless there's a topic that I might be able to intelligently address, like RTCs. It seems like the standard answer to any post nowadays is to get an evaluation. It frustrates me immensely because, in our experience, evaluations were not worth the paper they were written on. It'd be easier to tell you what T wasn't diagnosed with at one time or another than what he was. He had it all, depending on which psychiatrist evaluated him. And the rotten kid (said with much love) still giggles gleefully about the time he convinced psychiatrist #3 during hospitalization #6 that he was schizophrenic, complete with red and white angels as his "hallucinations." I think he was 8. There was not a single solitary *practical* piece of advice on how to help T, much less survive him, that came out of an evaluation. And there wasn't any sped setting that ever made an accommodation based on the gazillion evaluations he had.
I think back on the support and practical advice I was blessed enough to have received during those awful years, and then I think about what would've happened if I'd simply been advised to have him evaluated, or reevaluated, or re-reevaluated.... this would have been a very different place and I probably wouldn't have come back.
And yes, maybe I should try to step up and offer the advice I was given, but I swear.... I can't remember it. In addition to the aforementioned fog currently short circuiting my brain, at that time I was going from one crisis to another, trying to survive the days without losing what was left of my mind, with a husband who was gone more often than home and Boo deciding to add epilepsy to the mix and T wigging out, always wigging out... I simply couldn't tell you what Pico or Blondie or Fran or any of the other marvelous folks offered. I wish I could. The only thing I do remember about that time period is that during the seemingly perpetual ER visits/hospitalizations with the 2 oldest kids, having a Gameboy for Weeburt and a coloring book for Diva was essential to at least keep them chilled out while we put out whatever fire was raging on any given day.
Safety plans for the non G F Gs. Call 911 for violent behavior because we have the right to be safe in our own homes. Hospitalizations are not for treatment or cure or even accurate diagnosis sometimes - they're for stabilization and then you get to keep on keeping on once he's discharged.
I will admit that my opinion of evaluations, and psychiatrists/tdocs in general, is definitely colored by the road we traveled. T spent a full half of his childhood in RTCs. He was not "treated." He was not "cured." He was contained, restrained, medicated, and in one case mistreated. My other kids were kept safe from further damage by him, and that's about the best I can say. We saved what was left, and to be honest, the jury is still out on whether the younger 2 will ever be "okay." The best assessment of T came from his therapist at age 8 - "T will change when it becomes too expensive for him to stay the way he is." What none of us realized was that his capacity for enduring misery is near limitless. It took 2 years of living on the streets of Chicago for him to finally decide maybe jumping through a hoop once in a blue moon would be a good idea. Two years of us waiting to get a call from the police or, more likely, the coroner. He's doing phenomenally well now, truly, but his okay-ness has little to nothing to do with the parade of professionals in his childhood, whose skills varied from occasionally competent to more commonly completely clueless, and everything to do with him deciding that he was tired of being cold and hungry and dirty. Not to say he's the picture of mental health - the kid has his quirks - but he is a law abiding, employed, responsible adult, and that was always the goal.
We had Jerry (Jerri?) and then Martie who were whiz bangs at sped issues. And we all had sped issues. I thought I had a handle on sped because of Boo, but sped for a kid with multiple physical (i.e. obvious) disabilities is a completely different planet from sped for a mentally ill (i.e. not so obvious and more often regarded as a product of bad parenting) kid. Genius practical advice that absolutely made a huge difference in my ability to advocate for T. The Parent Report saved me a boatload of time. I do look in on the rare new post in sped to offer support and suggestions, but those posts don't happen often.
When I first came here, there were occasional board wars (I think 2 or 3 biggies) and flaming. Nasty stuff. We even had a small group splinter off and create a .org site (which is no longer in existence). Abby, and Fran after her, got a really good handle on it. We were reminded that this is a *soft* place to land, that we should take what we could use and leave the rest, that we were parents living in pressure cookers and were under stress ourselves so while being occasionally prickly could be forgiven, being a habitual PITA could not. We seemed to be able to remember to be kind to each other. The board was a safe place. It was my haven, my port in Typhoon T.
About 5 years ago, the tenor seemed to change. Much more harsh, judgmental, and unfortunately again occasionally downright nasty. Unlike in the early years, no one really called anyone on it; rather, it seemed more often that there was a pack mentality. This is no longer a safe haven for me. I've had some challenges with Diva and Weeburt that I would have shared with the old board in a heartbeat (because, after all, besides cr@ppy genetics, they also have to deal with the fallout of having 2 older brothers who consumed the family with their issues, and who better to seek advice and support from than parents who have been there done that or are doing it now), but the vibe of the board made it not an option for me anymore. Knowing what the board used to be certainly colors my perception, but I've often wondered what the newbie frazzled parent might be seeing when they pop in, hoping for support. I will say that things do seem to be improving, but aside from this post where I'm just laying it all out there, any time I *do* respond it is done with the utmost caution. And I've unfortunately employed the "ignore" button in a couple of cases.
I'm also not a fan of the FOO thing. I mean, I get it - spending 16 years in family therapy with T, and with a variety of tdocs, I know there are folks who completely buy into the "you are your FOO", but I think it's more a topic for a board geared toward adults with issues, not one for parents of kids with issues. Yes, the argument can be made that your FOO affects how you parent your difficult child, but .... it's just off-putting to me. I really didn't give a rat's behind about the effect my mother's eternal disapproval had on my parenting/coping skills as T was ripping my eyeglasses off my face and bending them into modern art, while I was driving. I was just trying to get through the day without him killing us all.
And now for the petty junk, LOL. I abhor the auto abbreviation expander thingy. I always referred to my son by his name, which now autocorrects to "thank you." Makes me *nuts*!!! And I do not like the term Difficult Child. Having spent my first year or so here going to sleep/waking up with my last/first thought being "I hate him, but I love him, but I hate him", the term G F G was a constant reminder (because I was constantly here) that my son truly *is* a gift from God, regardless of his latest antic. The term is part of our family vocabulary. But I'm getting old, I'm darn tired of making accommodations, and quite frankly, I am not dealing with change well. Like I said, petty - and probably completely unimportant to potential newbies.
Things change. People move on - hopefully because things are better. Maybe social media does have something to do with it. I have no idea what's out there. I don't do social media (change - yuck, LOL) and I certainly haven't searched for a support group in years (probably since 1999, LOL). Maybe there's a lifespan of support forums. We've got to be getting close to 20 years here. I don't know. It's a whole new generation of parents now and maybe facebook or twitter or whatever is more their cup of tea.
I write this with love and eternal gratitude for the folks who walked the path before me and beside me, and because this board was my lifeline for so many years, and because I hope that it can continue to be a lifeline for the next generation of parents who find themselves faced with the challenges of raising a difficult child.
Take what you can use...