Does the social needs forum feel like it’s changed?

[Anonymous]

I have to sometimes abandon my posts because someone attracks me on my posts, like fake, troll, I need to seek therapies etc. Sometimes I post just to vent to release my frustration because I have no other sources of support. They are all real, and my children are all SNs. I'm glad that it is anynomous or else I would not have posted.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Yes! I posted twice recently about gestalt language and finding a therapist. Instead, I got pages of nasty replies saying it wasn't a thing, I was jumping on the trend, arguing about if it's a thing, etc. Take the arguments off this board - I am going by what our current, professional therapists are calling it and asking for help finding someone local. In the past, people were so kind even if they didn't have suggestions. Now I'm scared to post.

Not to prove you point (lol - arguing that what you say is true isn’t true)…. But I remember back in 2014-2015 when I had a 3 year old and was finding myself on this forum more and more, one thing this forum liked to shit all over was PANDAS. Not relevant to me, but I just remember reading threads about aggressive kids (I was reading because ds was an incredibly handsy hyper toddler - and quickly got a adhd asd diagnosis). Whenever someone posted about “what do you think is going on with my aggressive kid” there were twenty posts about “probably adhd” and one short post “I would look into pandas”. And then several people would shit on them “made up” “doesn’t exist”. I didn’t even know what pandas was but figured it was made up.

Fast forward to 2018 and my kid got pandas. It took two months and withdrawing from school to figure out what was going on. I spent those two months doing hours and hours of internet research, academic paper research etc - looking for anything that would explain it. I vaguely remember landing in threads and webpages about pandas. I paid no attention because I didn’t know what pandas was but I knew from here that it wasn’t real. Ultimately a reputable psych tested for pandas and others based on how we’d described his overnight change, and he was immediately diagnosed. So point is that eight years ago, this forum had jerks telling ppl them were kooks.

Also, back then, there was a LOT of the typical feedback of “lady get a grip, SPD isn’t real and eventually you’ll have a adhd diagnosis porbably with asd.” People were pretty cruel on those threads with regularity. Or maybe it just sucks to hear the truth when you’re hoping it’s something less. But I thought ppl on this forum were “mean but helpful”. Even back then.

So just adding some perspective to the folks who think it was all sunshine and lollipops back in the day.

+1 I agree with this and I still think all those "mean" posts are helpful. It's good to know pandas exists. Also good to know the attitude towards the condition so I'd be prepared for skepticism with providers and others. It's the same situation with SPD and never getting an ASD or ADHD diagnosis. I appreciate the debate.

I disagree with this. While I absolutely think we should be kind to each other, one of the benefits of DCUM’s demographic is that we are highly educated and evidence based. There are a LOT of snakeoil salesmen in the SN world as well as trendy narratives that are amplified by social media instead of evidence. PANDAS is a great example of that. It’s absolutely true that there are sudden neurological conditions that can cause severe behavioral changes, including infections. But there have been practitioners willing to take advantage of parents to diagnose everything as PANDAS and prescribe risky & expensive treatments. I 100% want DCUM to continue to be a place where this is called out.

Sure. But it wasn't a dialogue about the authenticity of PANDAS. It was 15 people saying "sounds like your kid has ADHD" and one person saying "you might want to look into pandas" and then without fail one or two people would respond to that and tersely respond "not real" or something else snide. Again, this was years before my kid had pandas, and I was just generally reading threads (not even posting) about kids with sensory/adhd/asd preschool behaviors. But the super snarky responses on PANDAS were frequent and standout, that it left an impression with me for years, such that my brain didn't go there even when my kid's symptoms were all pointing to it. In any event, I'm not here to debate PANDAS. I'm just pointing out that my experience is that this forum has always been well-populated by jerks and it's not a new thing. Anti-pandas, and anti-spd are just the two examples that really stand out from my own experience almost ten years ago.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Yes! I posted twice recently about gestalt language and finding a therapist. Instead, I got pages of nasty replies saying it wasn't a thing, I was jumping on the trend, arguing about if it's a thing, etc. Take the arguments off this board - I am going by what our current, professional therapists are calling it and asking for help finding someone local. In the past, people were so kind even if they didn't have suggestions. Now I'm scared to post.

Not to prove you point (lol - arguing that what you say is true isn’t true)…. But I remember back in 2014-2015 when I had a 3 year old and was finding myself on this forum more and more, one thing this forum liked to shit all over was PANDAS. Not relevant to me, but I just remember reading threads about aggressive kids (I was reading because ds was an incredibly handsy hyper toddler - and quickly got a adhd asd diagnosis). Whenever someone posted about “what do you think is going on with my aggressive kid” there were twenty posts about “probably adhd” and one short post “I would look into pandas”. And then several people would shit on them “made up” “doesn’t exist”. I didn’t even know what pandas was but figured it was made up.

Fast forward to 2018 and my kid got pandas. It took two months and withdrawing from school to figure out what was going on. I spent those two months doing hours and hours of internet research, academic paper research etc - looking for anything that would explain it. I vaguely remember landing in threads and webpages about pandas. I paid no attention because I didn’t know what pandas was but I knew from here that it wasn’t real. Ultimately a reputable psych tested for pandas and others based on how we’d described his overnight change, and he was immediately diagnosed. So point is that eight years ago, this forum had jerks telling ppl them were kooks.

Also, back then, there was a LOT of the typical feedback of “lady get a grip, SPD isn’t real and eventually you’ll have a adhd diagnosis porbably with asd.” People were pretty cruel on those threads with regularity. Or maybe it just sucks to hear the truth when you’re hoping it’s something less. But I thought ppl on this forum were “mean but helpful”. Even back then.

So just adding some perspective to the folks who think it was all sunshine and lollipops back in the day.

+1 I agree with this and I still think all those "mean" posts are helpful. It's good to know pandas exists. Also good to know the attitude towards the condition so I'd be prepared for skepticism with providers and others. It's the same situation with SPD and never getting an ASD or ADHD diagnosis. I appreciate the debate.

I disagree with this. While I absolutely think we should be kind to each other, one of the benefits of DCUM’s demographic is that we are highly educated and evidence based. There are a LOT of snakeoil salesmen in the SN world as well as trendy narratives that are amplified by social media instead of evidence. PANDAS is a great example of that. It’s absolutely true that there are sudden neurological conditions that can cause severe behavioral changes, including infections. But there have been practitioners willing to take advantage of parents to diagnose everything as PANDAS and prescribe risky & expensive treatments. I 100% want DCUM to continue to be a place where this is called out.

What exactly are you disagreeing with? This is what that post is saying, that it's helpful to have people expressing skepticism about Pandas as well as the posters who advise posters that that is a possibility.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Yes! I posted twice recently about gestalt language and finding a therapist. Instead, I got pages of nasty replies saying it wasn't a thing, I was jumping on the trend, arguing about if it's a thing, etc. Take the arguments off this board - I am going by what our current, professional therapists are calling it and asking for help finding someone local. In the past, people were so kind even if they didn't have suggestions. Now I'm scared to post.

Not to prove you point (lol - arguing that what you say is true isn’t true)…. But I remember back in 2014-2015 when I had a 3 year old and was finding myself on this forum more and more, one thing this forum liked to shit all over was PANDAS. Not relevant to me, but I just remember reading threads about aggressive kids (I was reading because ds was an incredibly handsy hyper toddler - and quickly got a adhd asd diagnosis). Whenever someone posted about “what do you think is going on with my aggressive kid” there were twenty posts about “probably adhd” and one short post “I would look into pandas”. And then several people would shit on them “made up” “doesn’t exist”. I didn’t even know what pandas was but figured it was made up.

Fast forward to 2018 and my kid got pandas. It took two months and withdrawing from school to figure out what was going on. I spent those two months doing hours and hours of internet research, academic paper research etc - looking for anything that would explain it. I vaguely remember landing in threads and webpages about pandas. I paid no attention because I didn’t know what pandas was but I knew from here that it wasn’t real. Ultimately a reputable psych tested for pandas and others based on how we’d described his overnight change, and he was immediately diagnosed. So point is that eight years ago, this forum had jerks telling ppl them were kooks.

Also, back then, there was a LOT of the typical feedback of “lady get a grip, SPD isn’t real and eventually you’ll have a adhd diagnosis porbably with asd.” People were pretty cruel on those threads with regularity. Or maybe it just sucks to hear the truth when you’re hoping it’s something less. But I thought ppl on this forum were “mean but helpful”. Even back then.

So just adding some perspective to the folks who think it was all sunshine and lollipops back in the day.

+1 I agree with this and I still think all those "mean" posts are helpful. It's good to know pandas exists. Also good to know the attitude towards the condition so I'd be prepared for skepticism with providers and others. It's the same situation with SPD and never getting an ASD or ADHD diagnosis. I appreciate the debate.

I disagree with this. While I absolutely think we should be kind to each other, one of the benefits of DCUM’s demographic is that we are highly educated and evidence based. There are a LOT of snakeoil salesmen in the SN world as well as trendy narratives that are amplified by social media instead of evidence. PANDAS is a great example of that. It’s absolutely true that there are sudden neurological conditions that can cause severe behavioral changes, including infections. But there have been practitioners willing to take advantage of parents to diagnose everything as PANDAS and prescribe risky & expensive treatments. I 100% want DCUM to continue to be a place where this is called out.

Sure. But it wasn't a dialogue about the authenticity of PANDAS. It was 15 people saying "sounds like your kid has ADHD" and one person saying "you might want to look into pandas" and then without fail one or two people would respond to that and tersely respond "not real" or something else snide. Again, this was years before my kid had pandas, and I was just generally reading threads (not even posting) about kids with sensory/adhd/asd preschool behaviors. But the super snarky responses on PANDAS were frequent and standout, that it left an impression with me for years, such that my brain didn't go there even when my kid's symptoms were all pointing to it. In any event, I'm not here to debate PANDAS. I'm just pointing out that my experience is that this forum has always been well-populated by jerks and it's not a new thing. Anti-pandas, and anti-spd are just the two examples that really stand out from my own experience almost ten years ago.

I read those same posts many years ago, and I did not react the way you did. I got the sense pandas was kind of a fringe idea at the time and chances were low my child's issues were due to an infection but I had no hesitation in asking our provider about it and I would have also not hesitated to get my child tested had the issues continued. As it was the issues mostly disappeared after a class change.

[Anonymous]

I'm probably one of the oldest/longest posters here. Was on DCUM while pregnant with my oldest in 2002 when it was a listserve. It's been SO incredibly helpful and is probably one of the most supportive forums on DCUM. Yet, I, too, have noticed a recent unwelcome 'edge' to many posts. Oh, I agree with the PPs about the vitriol spewed towards PANDAS and SPD. There's always been a vocal few who insist a kid has ASD and the parents are just in denial. Yet, what I've seen lately, particularly from the 'professionals' who seem to have started to post recently, is the unwillingness to understand how parents feel based on their experiences.

There is a notable lack of empathy that, I feel, used to be far more pervasive in this forum. There was far more sensitivity when you posted something that disagreed with the OP or a PP. There were more 'gently suggest' posts. There was more acknowlegement that experiences may differ. Instead, I feel this forum has become more polarized and less sympathetic to the struggles parents of kids with SN.

I do not report posts that offer different opinions. The norm of this forum is support and community. I report posts that are unkind or from the same poster who repeatedly voices the same opinion over and over on the same thread - as if doing so will make it true and everyone will belive it. Jeff can decide if those posts should be deleted or not.

[Anonymous]

There are one or more school based employees that assume everyone is lying about their experience or not knowledgeable. Maybe at that persons school, they follow the law and recognize children that need supports and services. However there are a vast number of schools/ systems that do not. I don't think anyone on the forum needs their experience to be minimized even more than they already face at schools. It makes this board less useful and negative.

[Anonymous]

Anonymous wrote:There are one or more school based employees that assume everyone is lying about their experience or not knowledgeable. Maybe at that persons school, they follow the law and recognize children that need supports and services. However there are a vast number of schools/ systems that do not. I don't think anyone on the forum needs their experience to be minimized even more than they already face at schools. It makes this board less useful and negative.

+1 It's the dismissing of my experience as a parent that sets me on edge.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I have been disappointed that there seems to be an influx of educational professionals (teachers, admin) who actually do not know special education law or common diagnoses. They give incorrect information to parents and discourage parents from getting help from school. It’s really quite shocking to me.

I don’t remember the SN Board having so many negative people actively steering parents in unhelpful directions.

Yes! Within the last month a very unhappy teacher has been coming here to vent about parents requesting meetings and using advocates, with a very nasty and aggressive tone. People just want the bare minimum that their kid is legally entitled to, and are getting harassed on here for it.

DP. I have seen an increase here and on the school forums of teachers trying to explain how bad it is, with teacher shortages and with dire sped shortages. And yet, posters here recommend hiring an advocate or attorney as the first course of action. It doesn't make any sense.

It makes perfect sense. When resources are scarce, it is rational for individuals with means to use those means to get those resources. They can't singlehandedly increase resources for special ed.

Yuck. You just proved PP’s point. Thanks for being Exhibit A.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:When you aren't lazy and do accurate data collection and write solid IEPs for your caseload, parents don't call advocates on you. I definitely had some questionable coworkers who met that criteria.

Posts like this are what is making the forum negative. This is not at all true and this belief is harmful for teachers and parents. Are we saying that advocates should always be a welcome part of the eligibility or IEP process, or that they should only be used when there are "lazy" teachers? Or that the only reason a parent could want an advocate is because a teacher is lazy and not a number of other issues?

NP. You need to read more carefully. The poster is saying that it's really rare for parents to seek to pay thousands of dollars to have someone help them if an IEP team is being helpful and careful. We have personally only called advocates for help when a team is being lazy or violating the law for other reasons and getting away with it and most parent we know only seek help when they are having a difficult time with an IEP team. I don't know if the parents are right or the IEP team is right but an advocate can help them come to a resolution.

No one said advocates are only used with lazy teachers.

I did read carefully. The post said "When you aren't lazy and do accurate data collection and write solid IEPs for your caseload, parents don't call advocates on you."

This isn’t the teacher’s job board. There is a jobs and careers section.

Stop deflecting.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:When you aren't lazy and do accurate data collection and write solid IEPs for your caseload, parents don't call advocates on you. I definitely had some questionable coworkers who met that criteria.

Posts like this are what is making the forum negative. This is not at all true and this belief is harmful for teachers and parents. Are we saying that advocates should always be a welcome part of the eligibility or IEP process, or that they should only be used when there are "lazy" teachers? Or that the only reason a parent could want an advocate is because a teacher is lazy and not a number of other issues?

NP. You need to read more carefully. The poster is saying that it's really rare for parents to seek to pay thousands of dollars to have someone help them if an IEP team is being helpful and careful. We have personally only called advocates for help when a team is being lazy or violating the law for other reasons and getting away with it and most parent we know only seek help when they are having a difficult time with an IEP team. I don't know if the parents are right or the IEP team is right but an advocate can help them come to a resolution.

No one said advocates are only used with lazy teachers.

I did read carefully. The post said "When you aren't lazy and do accurate data collection and write solid IEPs for your caseload, parents don't call advocates on you."

This isn’t the teacher’s job board. There is a jobs and careers section.

Stop deflecting.

DP. It's not deflection, it's fact. The appropriate place to complain about your job, employer or clients is the Jobs and Career section, not the Kids with SN forum.