Reminder about the purpose of the Kids with Special Needs Forum

[jsteele]

The Special Needs forum has historically been the most supportive and helpful forum on DCUM. But for some time now, many threads seem to repeat the same cycle in which posters ignore the request of the OP and, instead, engage in debates that have been repeated over and over again. The original post gets forgotten as posters argue with each other. So, I want to remind posters of the purpose of this forum:

1) The forum is aimed at providing support for and help to parents of kids with special needs.

2) The forum is not a place for posters to repeatedly engage in the same tired religious wars in defense of or opposition to particular diagnoses, conditions, or treatments.

3) Frankly, I don't understand most of the topics you folks argue about, but the unending debate about MERLD vs ASD has worn out my patience. This is going to have to stop. Posters can choose to refrain from this and similar arguments or I can intervene to block such posters from posting. Either way, I am not going to put up with it anymore.

4) Please remember to focus on the questions being asked with the goal of providing helpful responses to the OP. Don't dispute their diagnosis, don't insult the choices they have made, and don't hijack the thread to discuss your pet issue. Please use the "report" button to alert me to any posts doing these things to that I can deal with them.

[Anonymous]

I agree with you in theory, but sometimes it is important, especially for some of us with a background in the biomedical sciences, to point out that another evaluation might be in order because the current diagnosis does not appear to fit. Or whatever else the child appears to need.

This is in many ways a medical forum, and a lot of parents don't have the necessary knowledge to weigh what the school tells them, vs. what a developmental pediatrician or psychologist tells them, vs. what a therapist tells them.

My point is that occasionally it can be helpful to push, ask questions and suggest avenues the OP initially did not wish to implement. They must not be gratuitous or petty, I agree with that.

[Anonymous]

Thanks Jeff. I have loved this forum and it has been such a source of support to me. At bottom we all care about our individual kids and not “agendas” so I agree it has to stop. As a mom of a child with SN I think a HUGE part of the issue is that even more than in the NT world I have with my other kid, parents want their child to be more “normal” or have better options of becoming “typical”. It’s not a zero sum game. This has to stop.

[Anonymous]

Thank you.

[jsteele]

Anonymous wrote:
I agree with you in theory, but sometimes it is important, especially for some of us with a background in the biomedical sciences, to point out that another evaluation might be in order because the current diagnosis does not appear to fit. Or whatever else the child appears to need.

This is in many ways a medical forum, and a lot of parents don't have the necessary knowledge to weigh what the school tells them, vs. what a developmental pediatrician or psychologist tells them, vs. what a therapist tells them.

My point is that occasionally it can be helpful to push, ask questions and suggest avenues the OP initially did not wish to implement. They must not be gratuitous or petty, I agree with that.

Asking questions and suggesting additional avenues is fine. It is the constant "your diagnosis doesn't exist and you child actually has X" that is the problem.

[Anonymous]

Thank you for this. I agree. And I am so grateful for this forum.

[Anonymous]

Tone is very important here.

Posters need to build on past posts and not be divisive. It's fine to disagree. But this isn't off topic.

[Anonymous]

I am likely an offender- although I don’t care about MERLD vs. ASD. The perspective I bring is that if a special education teacher and SN mom. Sometimes I see the school blaming/teacher shaming as a defense mechanism that not only hurts the kid (I see this play out daily!!) and stops the parents from addressing core issues. It’s hard for me to remain objective.
For my part I do try to steer clear on reading others posts, although I do post new topics. There is just a lot of damage done by scared parents who refuse to accept the fact that their kids disability isn’t the schools fault. IMO

[Anonymous]

Anonymous wrote:I am likely an offender- although I don’t care about MERLD vs. ASD. The perspective I bring is that if a special education teacher and SN mom. Sometimes I see the school blaming/teacher shaming as a defense mechanism that not only hurts the kid (I see this play out daily!!) and stops the parents from addressing core issues. It’s hard for me to remain objective.
For my part I do try to steer clear on reading others posts, although I do post new topics. There is just a lot of damage done by scared parents who refuse to accept the fact that their kids disability isn’t the schools fault. IMO

I am also likely an offender as one of "the MERLD moms." But it is hard not to hit back when you are punched all the time.

I hope suggestioning a differential diagnosis to new parents on the board isn't going to be verboten.

There is a great post on the APD thread detailing how a child was misdiagnosed with autism when the child actually had a vision issue. Delving down and getting to the root of an issue, instead of just accepting what you are told without a thorough diagnosis and lots of research is crucial to helping children reach their potential.

[Anonymous]

I think there is a distinct difference between sharing your experience to give an OP another perspective and telling someone that you know what’s up with their kid because you know what your kid has. There’s been a lot of the latter on here recently.

[Anonymous]

The ‘it isn’t a diagnosis’ is thrown at people whose kids have been told they have sensory process issues / disorder.

[Anonymous]

Anonymous wrote:I think there is a distinct difference between sharing your experience to give an OP another perspective and telling someone that you know what’s up with their kid because you know what your kid has. There’s been a lot of the latter on here recently.

Yep. Too many instances of moms projecting their own experiences with their own kids and flattening everyone in their path. Your kid is your kid.

[Anonymous]

Some lines have to be drawn, like being anti-vax. It's also important to be able to provide evidence-based information on diagnoses that make people vulnerable to quacks or dangerous treatment (PANDAS, lyme). Likewise it's important to provide evidence-based information on treatments that are ineffective (eg play therapy for aggressive behavior in a young child).

And yes, there are sometimes parents that are evidently avoiding an autism diagnoses ("my child has language delays, social skills deficits, fine motor delays, rigidity, and anxiety, but is definitely not autistic!") I think it's fair to push them to describe how they arrived at whatever diagnosis they got. Because diagnosis shopping is actually a thing - I wouldn't have believed it if I hadn't seen it happen IRL.

But, I do agree that it all comes down to tone, and discerning when you are derailing a legitimate topic of conversation.

[Anonymous]

I just want to chime in and Thank Jeff and Maria for creating DCUM. My oldest child was born with a birth defect. We had it corrected incorrectly from a well regarded Dr in DC. Through DCUM we were able to find the right Drs and resources avoiding massive surgeries.

I have paid it forward - but always come back to the initial resources provided here to support families.

Thank you!

[Anonymous]

jsteele wrote:

Anonymous wrote:
I agree with you in theory, but sometimes it is important, especially for some of us with a background in the biomedical sciences, to point out that another evaluation might be in order because the current diagnosis does not appear to fit. Or whatever else the child appears to need.

This is in many ways a medical forum, and a lot of parents don't have the necessary knowledge to weigh what the school tells them, vs. what a developmental pediatrician or psychologist tells them, vs. what a therapist tells them.

My point is that occasionally it can be helpful to push, ask questions and suggest avenues the OP initially did not wish to implement. They must not be gratuitous or petty, I agree with that.

Asking questions and suggesting additional avenues is fine. It is the constant "your diagnosis doesn't exist and you child actually has X" that is the problem.

Totally get it. I just hope that someone doesn't take advantage of flagging and flag comments that they actually just disagree with. But I fully understand that your moderation may need to be more heavy handed to teach us all how to behave, lol.