I am a parent who has a congenital, permanent physical disability. I have found a lot of support in Facebook groups dedicated to my condition. Just a suggestion for others.

Anonymous wrote:

Anonymous wrote:I am a parent with some disabilities but I am not looking for a designated forum on DCUM to accommodate me. And the reason why is the general tone of DCUM is snarky and mean and I have had people say terrible, terrible things to me when I've mentioned my condition on relevant threads - in the health forum for example, where my actual condition has been the topic of the thread started by someone else.

I try to avoid it altogether now, mentioning it.

This is OP … I hear you. I have been reluctant to ask too many questions or post comments on this topic too (and for the same reasons you mention). But, then, if you take a look at the “Kids with Special Needs and Disabilities” Forum, you will find a lot of kind words, support and useful information. I could be wrong, but my feeling is that a separate forum for adults with special needs and disabilities would provide some small protection from mean and irrelevant comments. Of course, there is a question whether there are enough people interested to post and share information and, honestly, I don’t know that many people who are my age and who have to deal with similar issues. If we are truly unicorns, then having a separate forum makes no sense. But, if there is enough people who can contribute, we could have another kind and helpful space on DCUM, just like one for the kids.

+1

I regularly post in the Kids with SN forum and agree that it has a tone that is unique from the rest of DCUM. Regular posters and Jeff actively protect that. I've posted there in the past to ADHD parents with ADHD kids just to get support and there really was a lot more community and support than you'd typically find in DCUM. While I appreciate what Jeff is saying, I do agree that it would be hard to create a demand when the majority of the forum actively discourages genuine vulnerability.

Anonymous wrote:

Anonymous wrote:I am a parent with some disabilities but I am not looking for a designated forum on DCUM to accommodate me. And the reason why is the general tone of DCUM is snarky and mean and I have had people say terrible, terrible things to me when I've mentioned my condition on relevant threads - in the health forum for example, where my actual condition has been the topic of the thread started by someone else.

I try to avoid it altogether now, mentioning it.

This is OP … I hear you. I have been reluctant to ask too many questions or post comments on this topic too (and for the same reasons you mention). But, then, if you take a look at the “Kids with Special Needs and Disabilities” Forum, you will find a lot of kind words, support and useful information. I could be wrong, but my feeling is that a separate forum for adults with special needs and disabilities would provide some small protection from mean and irrelevant comments. Of course, there is a question whether there are enough people interested to post and share information and, honestly, I don’t know that many people who are my age and who have to deal with similar issues. If we are truly unicorns, then having a separate forum makes no sense. But, if there is enough people who can contribute, we could have another kind and helpful space on DCUM, just like one for the kids.

PP you're responding to - that does make sense and I've not been in that forum much at all, so didn't know it was like that.

Anonymous wrote:I am a parent with some disabilities but I am not looking for a designated forum on DCUM to accommodate me. And the reason why is the general tone of DCUM is snarky and mean and I have had people say terrible, terrible things to me when I've mentioned my condition on relevant threads - in the health forum for example, where my actual condition has been the topic of the thread started by someone else.

I try to avoid it altogether now, mentioning it.

This is OP … I hear you. I have been reluctant to ask too many questions or post comments on this topic too (and for the same reasons you mention). But, then, if you take a look at the “Kids with Special Needs and Disabilities” Forum, you will find a lot of kind words, support and useful information. I could be wrong, but my feeling is that a separate forum for adults with special needs and disabilities would provide some small protection from mean and irrelevant comments. Of course, there is a question whether there are enough people interested to post and share information and, honestly, I don’t know that many people who are my age and who have to deal with similar issues. If we are truly unicorns, then having a separate forum makes no sense. But, if there is enough people who can contribute, we could have another kind and helpful space on DCUM, just like one for the kids.

I am a parent with some disabilities but I am not looking for a designated forum on DCUM to accommodate me. And the reason why is the general tone of DCUM is snarky and mean and I have had people say terrible, terrible things to me when I've mentioned my condition on relevant threads - in the health forum for example, where my actual condition has been the topic of the thread started by someone else.

I try to avoid it altogether now, mentioning it.

jsteele wrote:

Anonymous wrote:
I would be happy to start multiple threads under several forums with a clear explanation of the end goal, but would appreciate your thoughts again.

Thanks!

Please don't do that because I expect that it would provoke a negative reaction, mostly by people complaining that you are starting so many threads. Just start — for lack of a better word — "real" threads. Threads about things about which you really want to talk, not to artificially generate discussion. If you think a thread is better for a different forum, go ahead and post in there instead of the Health forum.

Got it! Thank you!

Anonymous wrote:
I would be happy to start multiple threads under several forums with a clear explanation of the end goal, but would appreciate your thoughts again.

Thanks!

Please don't do that because I expect that it would provoke a negative reaction, mostly by people complaining that you are starting so many threads. Just start — for lack of a better word — "real" threads. Threads about things about which you really want to talk, not to artificially generate discussion. If you think a thread is better for a different forum, go ahead and post in there instead of the Health forum.

jsteele wrote:I've found the "build it and they will come" approach to forums really doesn't work. So, my preference is to create a new forum only when there is sufficient content already existing in other forums that can be moved in to a new forum. A such, I suggest that you create threads on this topic in the Health forum for now. If the threads prove interesting and get traction, it will justify a separate forum.

Thank you for your reply Jeff!
Since we first need to show that there is enough diverse interest from individuals with special needs and disabilities, maybe I should start several threads at the same time on different forums? While I don’t know how many DCUM members would be interested and would engage, I don’t think that posting questions in Health forum would give you a good enough idea about the potential level of engagement. As you are probably aware, having a disability affects every aspect of one’s life not just health. So, you would see different strategies and issues with parenting, relationships with spouses, family and friends, finding adequate nannies and housekeepers, employment, etc. Also, just like posting under general parenting vs. parenting for kids with disabilities is not the same and it attracts people with different personal experiences, parenting questions when parent is the one with chronic issues would attract different audience and traction.

I would be happy to start multiple threads under several forums with a clear explanation of the end goal, but would appreciate your thoughts again.

Thanks!

I've found the "build it and they will come" approach to forums really doesn't work. So, my preference is to create a new forum only when there is sufficient content already existing in other forums that can be moved in to a new forum. A such, I suggest that you create threads on this topic in the Health forum for now. If the threads prove interesting and get traction, it will justify a separate forum.

Great idea!

Anonymous wrote:

Anonymous wrote:Maybe adults with disabilities rather than just limiting it to parents?

Yes, great point!

From OP … the above.

Anonymous wrote:Maybe adults with disabilities rather than just limiting it to parents?

Yes, great point!

Maybe adults with disabilities rather than just limiting it to parents?

This is a great idea.

Hi Jeff,
As a parent with a chronic illness I face many unique parenting issues (compared to the people I know). Over the years, I have found it very difficult to find and connect with other parents in a similar situation. Your entire website is amazing and allows people discuss various topics, but I don’t see a forum that would be a natural place to go to post questions or look for discussion about issues that are most difficult for parents who are in a situation similar to mine. A separate forum for parents who themselves have special needs and disabilities might be very helpful and could allow parents to share ways to overcome issues that are due to their illness or disability.

Thank you so much!