MERLD / receptive expressive language disorder and friendships

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:P.p of 4yo, can I have a link to a merld group? Looking for support.

Natural Late Talkers on Facebook. It's a closed group and you have to ask to join, and it might take a day or two to get access, but it's a good, supportive forum and they have rules to keep things from veering off into special diets, supplements, and whatnot.

Yes, this group is terrific.

Such a relief after the DCUM, which is openly hostile to MERLD, as we see in every thread started by a MERLD parent.

Then stop posting here. The point of this facebook group referenced above is to avoid autism diagnoses. Many of the children have been diagnosed at one point with ASD and their parents shopped for a new diagnosis. They exclusively recommend the Camarats, who are fine, but Mary is literally a SLP - not a doctor or a psychologist. She is fine, and a good SLP, but there is nothing magic about her other than the fact that she diagnoses autism less often than others. The children she sees are not NT, and will likely never be, But their parents desperately want to avoid a "label" and believe that ABA is "damaging" - they also vaguely mention avoiding other types of therapy, even though the kids so often clearly need OT and behavioral help. They are hostile to recommendations that people get help or complete assessments even when children obviously have far more going on than language delays. Bottom line: its a bunch of quackery crap that reassures desperate parents. I wouldn't care except some of those parents are not getting help their children desperately need because of their own issues.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:P.p of 4yo, can I have a link to a merld group? Looking for support.

Natural Late Talkers on Facebook. It's a closed group and you have to ask to join, and it might take a day or two to get access, but it's a good, supportive forum and they have rules to keep things from veering off into special diets, supplements, and whatnot.

Yes, this group is terrific.

Such a relief after the DCUM, which is openly hostile to MERLD, as we see in every thread started by a MERLD parent.

+100000

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:P.p of 4yo, can I have a link to a merld group? Looking for support.

Natural Late Talkers on Facebook. It's a closed group and you have to ask to join, and it might take a day or two to get access, but it's a good, supportive forum and they have rules to keep things from veering off into special diets, supplements, and whatnot.

Yes, this group is terrific.

Such a relief after the DCUM, which is openly hostile to MERLD, as we see in every thread started by a MERLD parent.

Then stop posting here. The point of this facebook group referenced above is to avoid autism diagnoses. Many of the children have been diagnosed at one point with ASD and their parents shopped for a new diagnosis. They exclusively recommend the Camarats, who are fine, but Mary is literally a SLP - not a doctor or a psychologist. She is fine, and a good SLP, but there is nothing magic about her other than the fact that she diagnoses autism less often than others. The children she sees are not NT, and will likely never be, But their parents desperately want to avoid a "label" and believe that ABA is "damaging" - they also vaguely mention avoiding other types of therapy, even though the kids so often clearly need OT and behavioral help. They are hostile to recommendations that people get help or complete assessments even when children obviously have far more going on than language delays. Bottom line: its a bunch of quackery crap that reassures desperate parents. I wouldn't care except some of those parents are not getting help their children desperately need because of their own issues.

You are a perfect case in point about why the Facebook MERLD group is so needed.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:P.p of 4yo, can I have a link to a merld group? Looking for support.

Natural Late Talkers on Facebook. It's a closed group and you have to ask to join, and it might take a day or two to get access, but it's a good, supportive forum and they have rules to keep things from veering off into special diets, supplements, and whatnot.

Yes, this group is terrific.

Such a relief after the DCUM, which is openly hostile to MERLD, as we see in every thread started by a MERLD parent.

Then stop posting here. The point of this facebook group referenced above is to avoid autism diagnoses. Many of the children have been diagnosed at one point with ASD and their parents shopped for a new diagnosis. They exclusively recommend the Camarats, who are fine, but Mary is literally a SLP - not a doctor or a psychologist. She is fine, and a good SLP, but there is nothing magic about her other than the fact that she diagnoses autism less often than others. The children she sees are not NT, and will likely never be, But their parents desperately want to avoid a "label" and believe that ABA is "damaging" - they also vaguely mention avoiding other types of therapy, even though the kids so often clearly need OT and behavioral help. They are hostile to recommendations that people get help or complete assessments even when children obviously have far more going on than language delays. Bottom line: its a bunch of quackery crap that reassures desperate parents. I wouldn't care except some of those parents are not getting help their children desperately need because of their own issues.

You are a perfect case in point about why the Facebook MERLD group is so needed.

No, I am not. My kid does not have ASD. But he did have receptive language issues, which is why I was once a member of the facebook group and so I know of what I speak, and has a low average IQ. I was never concerned about ASD BUT it is ridiculous to have the kind of fear mongering re ASD that goes on by the posters like you, and on that forum. It is discriminatory, not grounded in reality, and unhelpful to your disabled children.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My DD with MERLD (undiagnosed till she was 14) had a small, tight group of 3 friends in elementary school, but had no other friends. And when they all dispersed in middle school, things got really rocky. She had a few acquaintances from school she'd hang out with occasionally, but none blossomed into a friendship.

For DD it's both having a hard time both getting the conversation, especially in a group, and then being able to coherently say what she's thinking about in response.

Interestingly, she has had two long-term boyfriends, one in high school and another now in college. She is better at communicating one-on-one and has a couple friends at college but hates going to parties.

Just curious- how/why was this diagnosed so late in life? Seems like it should have been flagged-it’s not a mild/not obvious thing when a child doesn’t understand spoken language.

She was not a late talker, and through preschool seemed to have OK language skills with several preschool friends. It wasn't till early elementary that it became clear (to me at least) she was having trouble following the teacher, as well as classmates when they spoke. Even then, quiet = well behaved, and teachers thought she was fine. In fact, even though she had a lot of issues that presented as short-term memory problems, in the two IEP meetings (elementary and middle school) I requested resulted in me basically being mocked as an over-involved mother who cared only about grades. That was clearly not true, but basically how special ed identification n MCPS works.

I finally sprang for neuro-psych testing on my own, and this was one of the diagnoses, in addition to a math disability and a couple other things. The psychologist identified her main LD as MERLD and I never knew it wasn't considered a "real" diagnosis by some until reading that on DCUM. She doesn't appear to be HFA to me at all as she gets social cues, emotions, etc. It's definitely a language issue for her. It took her years to understand the point of puns, for example.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:P.p of 4yo, can I have a link to a merld group? Looking for support.

Natural Late Talkers on Facebook. It's a closed group and you have to ask to join, and it might take a day or two to get access, but it's a good, supportive forum and they have rules to keep things from veering off into special diets, supplements, and whatnot.

Yes, this group is terrific.

Such a relief after the DCUM, which is openly hostile to MERLD, as we see in every thread started by a MERLD parent.

Then stop posting here. The point of this facebook group referenced above is to avoid autism diagnoses. Many of the children have been diagnosed at one point with ASD and their parents shopped for a new diagnosis. They exclusively recommend the Camarats, who are fine, but Mary is literally a SLP - not a doctor or a psychologist. She is fine, and a good SLP, but there is nothing magic about her other than the fact that she diagnoses autism less often than others. The children she sees are not NT, and will likely never be, But their parents desperately want to avoid a "label" and believe that ABA is "damaging" - they also vaguely mention avoiding other types of therapy, even though the kids so often clearly need OT and behavioral help. They are hostile to recommendations that people get help or complete assessments even when children obviously have far more going on than language delays. Bottom line: its a bunch of quackery crap that reassures desperate parents. I wouldn't care except some of those parents are not getting help their children desperately need because of their own issues.

You should stop giving MERLD parents a hard time. Your posts are not helpful to anyone. You don't know the diagnosis of children you've never met, you are not a health care professional, and you can't diagnose over the internet. If you have helpful recommendations, then make them and then shut up. It is up to parents to decide what is best for their children. End of story.
-an ASD parent.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:P.p of 4yo, can I have a link to a merld group? Looking for support.

Natural Late Talkers on Facebook. It's a closed group and you have to ask to join, and it might take a day or two to get access, but it's a good, supportive forum and they have rules to keep things from veering off into special diets, supplements, and whatnot.

Yes, this group is terrific.

Such a relief after the DCUM, which is openly hostile to MERLD, as we see in every thread started by a MERLD parent.

Then stop posting here. The point of this facebook group referenced above is to avoid autism diagnoses. Many of the children have been diagnosed at one point with ASD and their parents shopped for a new diagnosis. They exclusively recommend the Camarats, who are fine, but Mary is literally a SLP - not a doctor or a psychologist. She is fine, and a good SLP, but there is nothing magic about her other than the fact that she diagnoses autism less often than others. The children she sees are not NT, and will likely never be, But their parents desperately want to avoid a "label" and believe that ABA is "damaging" - they also vaguely mention avoiding other types of therapy, even though the kids so often clearly need OT and behavioral help. They are hostile to recommendations that people get help or complete assessments even when children obviously have far more going on than language delays. Bottom line: its a bunch of quackery crap that reassures desperate parents. I wouldn't care except some of those parents are not getting help their children desperately need because of their own issues.

You are a perfect case in point about why the Facebook MERLD group is so needed.

No, I am not. My kid does not have ASD. But he did have receptive language issues, which is why I was once a member of the facebook group and so I know of what I speak, and has a low average IQ. I was never concerned about ASD BUT it is ridiculous to have the kind of fear mongering re ASD that goes on by the posters like you, and on that forum. It is discriminatory, not grounded in reality, and unhelpful to your disabled children.

PP did not do any fearmongering. If you have a problem with posters in a Facebook group, I suggest you take it up with that group. We try to be supportive in this group, not confrontational.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:P.p of 4yo, can I have a link to a merld group? Looking for support.

Natural Late Talkers on Facebook. It's a closed group and you have to ask to join, and it might take a day or two to get access, but it's a good, supportive forum and they have rules to keep things from veering off into special diets, supplements, and whatnot.

Yes, this group is terrific.

Such a relief after the DCUM, which is openly hostile to MERLD, as we see in every thread started by a MERLD parent.

Then stop posting here. The point of this facebook group referenced above is to avoid autism diagnoses. Many of the children have been diagnosed at one point with ASD and their parents shopped for a new diagnosis. They exclusively recommend the Camarats, who are fine, but Mary is literally a SLP - not a doctor or a psychologist. She is fine, and a good SLP, but there is nothing magic about her other than the fact that she diagnoses autism less often than others. The children she sees are not NT, and will likely never be, But their parents desperately want to avoid a "label" and believe that ABA is "damaging" - they also vaguely mention avoiding other types of therapy, even though the kids so often clearly need OT and behavioral help. They are hostile to recommendations that people get help or complete assessments even when children obviously have far more going on than language delays. Bottom line: its a bunch of quackery crap that reassures desperate parents. I wouldn't care except some of those parents are not getting help their children desperately need because of their own issues.

You are a perfect case in point about why the Facebook MERLD group is so needed.

No, I am not. My kid does not have ASD. But he did have receptive language issues, which is why I was once a member of the facebook group and so I know of what I speak, and has a low average IQ. I was never concerned about ASD BUT it is ridiculous to have the kind of fear mongering re ASD that goes on by the posters like you, and on that forum. It is discriminatory, not grounded in reality, and unhelpful to your disabled children.

My guess is you are one of the hostile members who was booted from the group because you couldn't keep your nastiness and vitriol from spilling out to the rest of the group members. The group does NOT encourage avoiding a CORRECT Autism diagnosis. They simply try to provide some common sense in our current "anything outside of the norm must be ASD" environment. From the group guidelines, here are their statements in regard to ASD:

"This is not an Autism bashing group. This is a group for parents of kids who have delays that are NOT Autistic and for parents of children who have been incorrectly diagnosed with Autism."

"We support clinically reputable diagnostics - First and foremost, a medical evaluation should be completed in all cases in which a child is delayed in talking in order to rule out any medical factors contributing to the late onset of language. A number of clinical conditions include late talking as a symptom. And of course, there is also the possibility that a child is just a late bloomer."

The moderators in the group NEVER discourage a member from seeking out an evaluation. And in some cases, those evaluations come up with a very solid case for ASD. But most times, parents find the group because their child has received an ASD diagnosis (usually from a school SLP who should NOT be handing out those diagnoses) and the parent does not feel it's a fit.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:P.p of 4yo, can I have a link to a merld group? Looking for support.

Natural Late Talkers on Facebook. It's a closed group and you have to ask to join, and it might take a day or two to get access, but it's a good, supportive forum and they have rules to keep things from veering off into special diets, supplements, and whatnot.

Yes, this group is terrific.

Such a relief after the DCUM, which is openly hostile to MERLD, as we see in every thread started by a MERLD parent.

Then stop posting here. The point of this facebook group referenced above is to avoid autism diagnoses. Many of the children have been diagnosed at one point with ASD and their parents shopped for a new diagnosis. They exclusively recommend the Camarats, who are fine, but Mary is literally a SLP - not a doctor or a psychologist. She is fine, and a good SLP, but there is nothing magic about her other than the fact that she diagnoses autism less often than others. The children she sees are not NT, and will likely never be, But their parents desperately want to avoid a "label" and believe that ABA is "damaging" - they also vaguely mention avoiding other types of therapy, even though the kids so often clearly need OT and behavioral help. They are hostile to recommendations that people get help or complete assessments even when children obviously have far more going on than language delays. Bottom line: its a bunch of quackery crap that reassures desperate parents. I wouldn't care except some of those parents are not getting help their children desperately need because of their own issues.

I'm assuming your child has ASD and you feel the need to be the parent who has to claim all kids are ASD. MERLD is very different than ASD. You haven't met these kids and make grand assumptions about them.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I'm so sad that my friendly, bubbly 6yo with MERLD can't make friends. She is such a sweetheart and wants friends so badly, but she just can't talk to the other girls at their level. Most are nice to her or at least civil, but of course some of the more advanced kids treat her like a moron. She perceives their condescension and knows they're being mean, even if she can't articulate exactly why. It's so painful to see. She hasn't been asked to a birthday party or playdate all year at her new school. Parents of older MERLD kids - does it ever get better? Did anything help? The more nervous she gets around other kids the more she talks below her level, so it's sort of a vicious cycle. Though even at her best she's still well below her peers.

OP - if you haven't already I would suggest continuous, ongoing speech therapy for her, as well as enrolling her in social skills groups. MERLD in my experience is something you have to stay on top of constantly - it's a tricky disorder that impacts our kids in so many ways.

This is a terrific suggestion. We did not do speech therapy with our MERLD kiddo when he was young because it was ineffective and stressed him out. However, when he turned 13, we felt he needed some help to "round out the edges" on his speech delay as well as some social skills coaching. If you can find a good social skills group, it's worth its weight in gold!

[Anonymous]

There are multiple causes of language delays and disorders. They are not all autism-related. They are not all ID- or IQ-related. The crappiness of people pouncing on every MERLD thread with their own strident opinions and agenda is mind-boggling to me.

I would NEVER barge into an ID or autism thread and try to convince them all that their kids REALLY have what MY kid has because the world revolves around me. Like I know a damn thing about anonymous people's kids' problems. The arrogance and stupidity and insensitivity are gross.

[Anonymous]

Anonymous wrote:There are multiple causes of language delays and disorders. They are not all autism-related. They are not all ID- or IQ-related. The crappiness of people pouncing on every MERLD thread with their own strident opinions and agenda is mind-boggling to me.

I would NEVER barge into an ID or autism thread and try to convince them all that their kids REALLY have what MY kid has because the world revolves around me. Like I know a damn thing about anonymous people's kids' problems. The arrogance and stupidity and insensitivity are gross.

+1000

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:P.p of 4yo, can I have a link to a merld group? Looking for support.

Natural Late Talkers on Facebook. It's a closed group and you have to ask to join, and it might take a day or two to get access, but it's a good, supportive forum and they have rules to keep things from veering off into special diets, supplements, and whatnot.

Yes, this group is terrific.

Such a relief after the DCUM, which is openly hostile to MERLD, as we see in every thread started by a MERLD parent.

Then stop posting here. The point of this facebook group referenced above is to avoid autism diagnoses. Many of the children have been diagnosed at one point with ASD and their parents shopped for a new diagnosis. They exclusively recommend the Camarats, who are fine, but Mary is literally a SLP - not a doctor or a psychologist. She is fine, and a good SLP, but there is nothing magic about her other than the fact that she diagnoses autism less often than others. The children she sees are not NT, and will likely never be, But their parents desperately want to avoid a "label" and believe that ABA is "damaging" - they also vaguely mention avoiding other types of therapy, even though the kids so often clearly need OT and behavioral help. They are hostile to recommendations that people get help or complete assessments even when children obviously have far more going on than language delays. Bottom line: its a bunch of quackery crap that reassures desperate parents. I wouldn't care except some of those parents are not getting help their children desperately need because of their own issues.

You are a perfect case in point about why the Facebook MERLD group is so needed.

No, I am not. My kid does not have ASD. But he did have receptive language issues, which is why I was once a member of the facebook group and so I know of what I speak, and has a low average IQ. I was never concerned about ASD BUT it is ridiculous to have the kind of fear mongering re ASD that goes on by the posters like you, and on that forum. It is discriminatory, not grounded in reality, and unhelpful to your disabled children.

If you had gone to one of the Camarata's you would understand your child's needs better with receptive language and IQ. Low IQ and receptive language issues generally mean a child will struggle more and the outcome is different than a child with receptive issues and a normal to high IQ. One of the reasons to go is to get your child's IQ tested as few really can connect with kids and get a good non-verbal tests, including IQ. So, to slam another family assuming your child is like theres is absolutely not true. My child has a very good IQ so how he functions with receptive concerns and yours are going to be very different.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I'm so sad that my friendly, bubbly 6yo with MERLD can't make friends. She is such a sweetheart and wants friends so badly, but she just can't talk to the other girls at their level. Most are nice to her or at least civil, but of course some of the more advanced kids treat her like a moron. She perceives their condescension and knows they're being mean, even if she can't articulate exactly why. It's so painful to see. She hasn't been asked to a birthday party or playdate all year at her new school. Parents of older MERLD kids - does it ever get better? Did anything help? The more nervous she gets around other kids the more she talks below her level, so it's sort of a vicious cycle. Though even at her best she's still well below her peers.

OP - if you haven't already I would suggest continuous, ongoing speech therapy for her, as well as enrolling her in social skills groups. MERLD in my experience is something you have to stay on top of constantly - it's a tricky disorder that impacts our kids in so many ways.

This is a terrific suggestion. We did not do speech therapy with our MERLD kiddo when he was young because it was ineffective and stressed him out. However, when he turned 13, we felt he needed some help to "round out the edges" on his speech delay as well as some social skills coaching. If you can find a good social skills group, it's worth its weight in gold!

How did you address the MERLD without ST?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I'm so sad that my friendly, bubbly 6yo with MERLD can't make friends. She is such a sweetheart and wants friends so badly, but she just can't talk to the other girls at their level. Most are nice to her or at least civil, but of course some of the more advanced kids treat her like a moron. She perceives their condescension and knows they're being mean, even if she can't articulate exactly why. It's so painful to see. She hasn't been asked to a birthday party or playdate all year at her new school. Parents of older MERLD kids - does it ever get better? Did anything help? The more nervous she gets around other kids the more she talks below her level, so it's sort of a vicious cycle. Though even at her best she's still well below her peers.

OP - if you haven't already I would suggest continuous, ongoing speech therapy for her, as well as enrolling her in social skills groups. MERLD in my experience is something you have to stay on top of constantly - it's a tricky disorder that impacts our kids in so many ways.

This is a terrific suggestion. We did not do speech therapy with our MERLD kiddo when he was young because it was ineffective and stressed him out. However, when he turned 13, we felt he needed some help to "round out the edges" on his speech delay as well as some social skills coaching. If you can find a good social skills group, it's worth its weight in gold!

How did you address the MERLD without ST?

We worked with him at home doing modeling and recasting. We also homeschooled, which essentially allowed us to do some version of ST all day, every day. We also have seen the Camaratas (Dr. Camarata actually diagnosed our son's MERLD) for years. Mary provided a lot of guidance on how to work with him at home. The ST we started seeing with him when he was 13 diagnosed him with Social (Pragmatic) Communication Disorder, which we fully agreed with. (he's too old for a MERLD dx now anyway, even if it were still in the diagnostic manual) She's helped us come up with ways to support him with social skills. Addressing his anxiety has made a huge difference as well. Now that he's 14, we see how much his anxiety caused issues when he was younger and couldn't communicate with us. We are so glad we went with our instincts and pulled him out of Early Intervention and speech therapy. They did not help and in fact hindered his growth. That is NOT always how it happens. In fact, ST really, really, really helps many (probably most) kids. It just backfired badly for us. I don't want it to sound like I'm saying don't do ST with your kiddo. You should *always* try ST. But just stay in tune with your kiddo's signals.