Online support forums for parents of mentally ill kids?

December 8, 2015 11:11 PM

I have a 15 year old with Bipolar Disorder and perhaps other disorders. We are currently dealing with school and legal issues due to his behaviors. I am heartbroken and need a place to talk to others who understand what I'm going through. I am going to check out a NAMI support group, but I was wondering if there are any good online forums to participate in.

If you want to contact me privately, use [e-mail].

posted by anonymous to Computers & Internet (7 answers total)

BPSO.org has a mailing list that may be of some use to you. It skews more toward partners/spouses of people with BP but also has a contingent of parents.
posted by Stacey at 11:23 PM on December 8, 2015

I am so, so sorry for you and your son.

My brother was mentally ill. He was diagnosed with Bipolar at 24. I feel you and, now that I'm a mother myself, stand in solidarity with you as you face your fear and sadness.

I've recommended Thresholds here before. They're a Chicago-based organization that works with mentally ill people to lead independent lives, and the attached link should direct you to their high school program. Even if this program isn't a possibility for you because of where you live, I would bet that someone at Thresholds would be willing to talk with you about your options and direct you to additional on-line resources. It's a start, in addition to NAMI.

I wish you the best. I know how hard this is.
posted by TryTheTilapia at 6:09 AM on December 9, 2015

The online forums tended to be dominated by people for whom this became their hobbyhorse/turf in unpleasant ways, rather than helpful in my experience. Forums are helpful to lurk in and if you see someone thoughtful, private messaging them might lead to an offline connection but basically anyone past the initial shock phase won't be online talking to strangers about their teenage child's mental illness without a lot of trust (so it won't be strangers but a very locked-down private forum or list) and/or anonymity, and the anonymity means you have a very shallow connection and won't get the depth of understanding.

RL-support is harder to find initially but stronger and better, and your kid's therapist or medical team/school (hospitals often have medical social workers who do referrals for this) will be able to point you to a local or regional group, or other parents who are willing to talk.

Memoirs helped me, both memoirs of people with the same condition and of family members to people with the same condition. Not quite a conversation, but it was a sort of roadmap to see possibilities outside of the immediate crisis.
posted by dorothyisunderwood at 6:35 AM on December 9, 2015 [2 favorites]

The online forums tended to be dominated by people for whom this became their hobbyhorse/turf in unpleasant ways, rather than helpful in my experience.

My SO found this to be true as well (he has a 20 year old son with schizo-affective). Not to put you off the idea but it's like finding an AA group, you need to find something that is a good fit for you and make sure you stay away from the ones that are all just "war stories" if that is not what you want. My SO found a lot of support with just knowing people were going through similar things (legal, school, etc) and being able to talk in a supportive and even friendly environment was huge. Finding local people who have gone through the school system and getting accomodations was a big deal so looking for local parenting groups even if they're not specifically dealing with mental illness might be useful. NAMI was a godsend for him both with their family-to-family program and also some of the group stuff that went along with his son's therapy/treatment.
posted by jessamyn at 8:09 AM on December 9, 2015

I found the forums at www.conductdisorders.com helpful--despite the original focus of the site, there are participants with kids across a wide range of diagnoses that manifest in major parenting challenges. They have specific subforums for educational issues and that was really useful to me when I was initially storming the gates of the IEP castle many years ago.
posted by drlith at 9:25 AM on December 9, 2015

As noted above, "support" forums are sometimes more drama than support. But, I did successfully Grow My Own for a while.

My children are probably both ASD. My oldest is particularly challenged and challenging. I handpicked people to invite from a homeschooling list I was on. I called the list "Wired for Science" and the mission was to discuss brain wiring of kids like mine as it related to how they experienced life and the kinds of interests they had. I was the moderator and my oldest son was the first member. My other son later joined just to lurk because he got tired of us discussing the discussions on list without him having context.

I invited a parent-child combo. In some cases, we had three family members, like both parents and a kid or one parent and two kids. I would post links to articles about research on brain wiring and we would talk about the article and how it related to our experiences of either being a person with those issues or living with a person with those issues.

It was a really wonderful experience and it allowed my son to blossom socially in important ways. He has been so much more socially functional since then.

If you can't find a support group that is actually supportive, I highly recommend trying to found a group that would have a discussion mission more conducive to getting you good and meaningful conversation with people who can relate to what you are going through and less conducive to promoting drama. I had around 20 or 26 members and it was really an awesome experience. You don't need a lot of people to make such a group work.

Best of luck.
posted by Michele in California at 1:55 PM on December 9, 2015 [1 favorite]

I found online forums less than helpful. For one, the people who spend the most time on them (and thus become the board elders and authority figures) are those whose kids are really bad off, so there were all these continuing horror stories and serial dramas and bad outcomes with their kids, which prompted these elders to make dire predictions about the situations of others, and all that made having a kid with mental illness seem so much more hopeless and awful than it actually turned out to be.

While initially I felt I'd found my tribe, after awhile I got tired of all the continuing sagas of crappy hopelessness and I weaned myself away from the board, and wound up feeling much happier and less fearful as a result.

Also I suspect some of the kids' mental disorders were genetic because some of the parents were very hard to get along with for various reasons. One woman attacked me viciously when I tried to comfort her by saying not to be so hard on herself, as if I were being critical rather than trying to help.

The conduct disorders website listed above was one of the worst, to be honest. There is a ton of IEP info there but the war stories may leave you feeling less than optimistic and hopeful.
posted by Serene Empress Dork at 8:08 PM on December 9, 2015