Parents excusing developmental delays--mostly a vent

[SparklyUnicorn]

For some reason this thread reminds me of the time my friend asked of my slow-to-warm-up baby, "are you sure she isn't a mongoloid?"  Not a fond memory.  And no, my kid is not intellectually disabled.

 

wow...geesh

[Butter]

It is true that kids develop at different ages. This little girl wasn't walking at 20 months. She could walk if someone held both her hands, so I'd guess it was at least 2-3 months or more after that when she started walking. And now at almost 2.5 Mom says she doesn't talk. If the doctor is seeing signs that he thinks might be autism, I'd want to know. Maybe it is just her hearing. Maybe something else is going on that no one has thought of. I'd just want to know, one way or the other.

 

I have a friend with a daughter who didn't walk until she was 20 or so months.  She's 20 years old now, no issues whatsoever.

 

My oldest son didn't speak a single word - zero words, not even mama or dada - until he was 2 1/2 exactly when he said his first two complete sentences.  He does have dyslexia.

 

My sister had a friend who apparently didn't talk and barely moved for 3 1/2 years.  She could walk sometime between 1 and 2, but preferred not to.  She was born in the 60s I think so it was back when people weren't hyperaware of possible issues.  The family joked there was something wrong with the kid, but never really thought there truly was.  She was fine.  No one knows why she was late to talking.

 

There could be something wrong with this kid or she could be fine.  I wouldn't say European kids are actually different from American kids, but a lot of parents are.  Many European parents tend to be more laid back about development and letting "late" kids catch up without worry (my observation with my husband's cousins being British and my MIL living in Ireland now; some are of course not so laid back, but it's a general feel).  YOU would want to know one way or the other.  They apparently don't or are in denial.  Both are okay.  Don't worry about it.  IF there is a problem, they will find out in time.

[PrairieSong]

OK, I'm going to be the bad guy here.

 

OP, you're using a lot of capitals and exclamation points. You seem overly emotionally involved in a family with 2 different doctors involved. While our culture is hyper vigilant about these things and may not want to hear a different approach and point of view, it's not like the parents got a second opinion from a medium or astrologer. They have been given 2 different opinions about how to proceed by two qualified individuals. I'm guessing they're much more relaxed personality types who don't have an "anything that can be done will be done as soon as it can possibly be done" point of view and are more culturally inclined to go with Swedish doctor. It's time to stand down. They've got it under control. Just because you would want immediate intervention and you haven't hear of differences in European development doesn't mean you need to tell them what to do. Be careful not to convince yourself that there will be catastrophic results if someone else isn't doing it the way you would do it.

 

I want to point out that they sought out a second opinion from a medical professional with more knowledge about their particular people group and you're getting opinions from strangers on the internet about a medical condition you have little specific knowledge of. Again, it's time to stand down.

No, they did not get two medical opinions according to what she said. The Swedish doctor wasn't someone they were seeing medically, but someone they know who happens to also be a doctor. A friend who is a doctor, who said his kids were different. Guess I wasn't clear on that point.

 

I am not badgering this mom. We had a conversation this weekend in which she brought up the autism. I didn't know their doctor or his nurses had mentioned it or were pushing for further evaluation until she told me. I said if it were me, I'd probably do the hearing test and whatever evaluation the doctor recommended, because I'd want to know. And we have not spoken since, nor do we communicate daily or even weekly. Just because this thread has gone on, does not mean my conversation with her did.

[JanetC]

I have two kids who were not quite on the developmental fast lane -- their evals turned out to nicely dance on the border between "low end of normal" and "high end of special needs." I have mixed feelings about the therapies we did: At one point, one DD had a great OT who was very caring, but moved to a different city. Her replacement was so used to working with severely impaired kids that she said that it was my fault DD had poor motor skills "Stop letting her watch so much TV! Take her outside!" (This kid spent her time indoors with books and art supplies, and outdoors in pretend play and building fairy houses rather than climbing and running.) I do appreciate the interventions that got my kids over their "humps", but (a) not all interactions with the helping profession are truly helpful and (b) none of the interventions really changed my kids' underlying strengths and weaknesses. So, I have mixed feelings about this - I have seen early intervention be both empowering and belittling, and I'm not sure "trying to catch up" changed my kids in any lasting way.

 

I would definitely not jump from "slow progress towards milestones" to "autism." That being said, "Kids are just like me, and I am fine." Well - DH could have some disability that just wasn't diagnosed in his day and age. I have totally seen that. Especially when the kids' quirks come from DH's (rather than DW's), there is this male ego thing involved in producing healthy offspring that can lead to stubborn denial. Only time will tell, I suppose. But if the kids are well cared for and getting outings, being read to, played with, etc., I would not worry too much. Parents stimulate their young kids' development out of love, rather than a race to complete milestones, and that is fine. It may be a bit less inefficient than what an OT can do, but it is fine.

[HS Mom in NC]

No, they did not get two medical opinions according to what she said. The Swedish doctor wasn't someone they were seeing medically, but someone they know who happens to also be a doctor. A friend who is a doctor, who said his kids were different. Guess I wasn't clear on that point.

 

I am not badgering this mom. We had a conversation this weekend in which she brought up the autism. I didn't know their doctor or his nurses had mentioned it or were pushing for further evaluation until she told me. I said if it were me, I'd probably do the hearing test and whatever evaluation the doctor recommended, because I'd want to know. And we have not spoken since, nor do we communicate daily or even weekly. Just because this thread has gone on, does not mean my conversation with her did.

 

The friend is a medical doctor.  Whether they personally know him or her isn't actually relevant.  It's a medical doctor with knowledge of their specific people group.  That counts.  Don't dismiss it.

 

But you continued it by posting about it on the internet.  I think you should be content that they have talked to more than one medical professional about it and now you can drop it in your own mind. Are you looking for personal experiences from posters here to share with her later in hopes of persuading her to do it the way you would? Are you looking for someone to just agree with you?  I'm fuzzy on your motivation about posting about it on the internet.

 

[SparklyUnicorn]

I know people swear by early intervention and I'm sure many times it makes a difference.  However, I also imagine that many of these providers err on the side of unneeded intervention verses being wrong and not intervening.  So we might not be sure what was the intervention verses that the kid would have developed normally anyway.  One of mine did stuff very early.  The other did stuff on the late end.  This really didn't make any sort of overall difference years later.  Doctors were not concerned about my late bloomer. 

 

 

[SKL]

Yeah, that's the other thing - how do I really know whether my kid improved because of "interventions" vs. because thing were developmentally ready to click?  In some cases I'm pretty sure the intervention helped, in other cases I think it might have even hurt.

[PrairieSong]

The friend is a medical doctor. Whether they personally know him or her isn't actually relevant. It's a medical doctor with knowledge of their specific people group. That counts. Don't dismiss it.

 

But you continued it by posting about it on the internet. I think you should be content that they have talked to more than one medical professional about it and now you can drop it in your own mind. Are you looking for personal experiences from posters here to share with her later in hopes of persuading her to do it the way you would? Are you looking for someone to just agree with you? I'm fuzzy on your motivation about posting about it on the internet.

 

I usually do come back and comment on threads I've started. My post was mostly a vent, as I said. I didn't want to vent to anyone IRL so I came here. The doctor friend is Swedish. They aren't Swedish. I don't know what specific knowledge he has of British people.

 

I'm not looking for information on this thread in hopes of sharing it with her later, no. I'm not looking for someone to agree with me. I don't know what is going on with this little girl. I only know the doctor and nurses mentioned possible autism, and/or a possible hearing problem. I know what I've observed but I don't know exactly what it means. There are other issues going on with the mom that colors my perception of the situation and makes me more worried than I otherwise would be, but I don't want to post about that aspect. So...this is just my way of talking over the back fence.

[Lecka]

I have this kind of conversation sometimes. 

 

I have a child with a dev. delay so I am the person who is considered more "in the know."

 

To me, quite honestly, this is part of being part of a community. 

 

Sometimes we have concerns about other kids and wonder if there is a better way. 

 

I am on the other side, where I have heard after the fact that a couple of people wondered about sharing concerns with me, but decided not to share them. 

 

You know what?  I don't know if I would have accepted their concerns at the time, but I also wish they would have shared their concerns. 

 

But I am really on the side of what the OP has done ---- gently mentioning things as they come up.

 

But here is how it works sometimes:  maybe another person is perceived as someone who is a better person to bring something up, and another person is not perceived as a good person to bring it up. 

 

The person with the precocious child is NOT the person who ought to bring this up, or that is how it feels where I am. 

 

But maybe the person with the precocious child is the one who is around and is noticing things and wondering about mentioning them.

 

But at the end of the day ----- I think that mentioning something once *if it comes up pretty naturally* and then saying I do know about some local resources if anyone is interested, that is really about all that is going to be received.

 

But if that makes me sound like I go around gossiping all the time and looking around for children not perfect on some developmental checklist ------ please believe this is not the case. 

 

This is also just my reading, but I do not read it as the family has "consulted" the 2nd doctor.  It sounds like they had an informal conversation.  It could have been very informal, it is hard to say.  It could have been a limited description mentioning only a couple of issues. 

 

So I do not really understand why people are saying "they have consulted two doctors."  It just does not come across like that to me. 

 

 

[SKL]

I don't know about how many doctors have been consulted, but if I am reading the OP correctly, she last saw these folks a year ago, when the eldest child was 16mo and the youngest not even born.  The parents have friends who have presumably seen the children more recently who say the kids are fine.  The parents feel the kids are fine.

[Lecka]

Naturally for me I know a lot of kids who have dev delays, and I hear a lot about kids who have dev delays.

 

This is just natural for me as a parent of a child with a dev delay.

 

So I think it is natural for me to read it in another way, and be acquainted with people where waiting did not work out as hoped.

 

But I know it works out the opposite way, with no problem, much more of the time.

 

It is just not my sample set, and then, it would be quite rude for anyone to say that to me now. Who says that to a parent who has a child with a dev delay? Nobody.

 

So I don't even hear those anecdotes anymore like I used to.

 

Still -- I easily read it like there is denial or a lack of knowledge at play

With a new baby a lot of parents are not going out around other toddlers to keep from getting sick all the time, and are not having those other kids around to compare to. It is a real situation that happens sometimes.

[SparklyUnicorn]

I see nothing wrong with mentioning it.  I'd be ok with a friend telling me that.  I might not listen though.  But then, I might. 

 

If my friend told me they asked a doctor, I'm not going to argue with them about that though.  Not unless it was something that seemed dire to me. 

 

Years ago a coworker of my husband had a baby that was very big.  He was so large as a 6 month old he was about the height of my 1.5 year old.  He was so tall he had a tough time moving around.  I thought it was so unusual.  The family was Dutch though, and they themselves were extremely tall.  So what do I know?!  I come from a family of a lot of exceptionally short people.  They weren't concerned.  Their doctor wasn't concerned.  The kid is fine years later. 

 

I don't quite believe there is something inherently different about European babies like the OP's friend said, but I do believe that if they know of other family members who were similar at that age and were fine then they have some insight into the difference. 

 

 

I have this kind of conversation sometimes. 

 

I have a child with a dev. delay so I am the person who is considered more "in the know."

 

To me, quite honestly, this is part of being part of a community. 

 

Sometimes we have concerns about other kids and wonder if there is a better way. 

 

I am on the other side, where I have heard after the fact that a couple of people wondered about sharing concerns with me, but decided not to share them. 

 

You know what?  I don't know if I would have accepted their concerns at the time, but I also wish they would have shared their concerns. 

 

But I am really on the side of what the OP has done ---- gently mentioning things as they come up.

 

But here is how it works sometimes:  maybe another person is perceived as someone who is a better person to bring something up, and another person is not perceived as a good person to bring it up. 

 

The person with the precocious child is NOT the person who ought to bring this up, or that is how it feels where I am. 

 

But maybe the person with the precocious child is the one who is around and is noticing things and wondering about mentioning them.

 

But at the end of the day ----- I think that mentioning something once *if it comes up pretty naturally* and then saying I do know about some local resources if anyone is interested, that is really about all that is going to be received.

 

But if that makes me sound like I go around gossiping all the time and looking around for children not perfect on some developmental checklist ------ please believe this is not the case. 

 

This is also just my reading, but I do not read it as the family has "consulted" the 2nd doctor.  It sounds like they had an informal conversation.  It could have been very informal, it is hard to say.  It could have been a limited description mentioning only a couple of issues. 

 

So I do not really understand why people are saying "they have consulted two doctors."  It just does not come across like that to me. 

 

[Xahm]

I understand the vent. It's hard seeing people we care about make bad choices (or choices we think are bad), especially when those choices affect children. It's their right to make those choices, but that doesn't make it easier to watch. So you vent online instead of nagging the parent or gossiping in real life.

I usually do come back and comment on threads I've started. My post was mostly a vent, as I said. I didn't want to vent to anyone IRL so I came here. The doctor friend is Swedish. They aren't Swedish. I don't know what specific knowledge he has of British people.

I'm not looking for information on this thread in hopes of sharing it with her later, no. I'm not looking for someone to agree with me. I don't know what is going on with this little girl. I only know the doctor and nurses mentioned possible autism, and/or a possible hearing problem. I know what I've observed but I don't know exactly what it means. There are other issues going on with the mom that colors my perception of the situation and makes me more worried than I otherwise would be, but I don't want to post about that aspect. So...this is just my way of talking over the back fence.

 

[PrairieSong]

I have this kind of conversation sometimes.

 

I have a child with a dev. delay so I am the person who is considered more "in the know."

 

To me, quite honestly, this is part of being part of a community.

 

Sometimes we have concerns about other kids and wonder if there is a better way.

 

I am on the other side, where I have heard after the fact that a couple of people wondered about sharing concerns with me, but decided not to share them.

 

You know what? I don't know if I would have accepted their concerns at the time, but I also wish they would have shared their concerns.

 

But I am really on the side of what the OP has done ---- gently mentioning things as they come up.

 

But here is how it works sometimes: maybe another person is perceived as someone who is a better person to bring something up, and another person is not perceived as a good person to bring it up.

 

The person with the precocious child is NOT the person who ought to bring this up, or that is how it feels where I am.

 

But maybe the person with the precocious child is the one who is around and is noticing things and wondering about mentioning them.

 

But at the end of the day ----- I think that mentioning something once *if it comes up pretty naturally* and then saying I do know about some local resources if anyone is interested, that is really about all that is going to be received.

 

But if that makes me sound like I go around gossiping all the time and looking around for children not perfect on some developmental checklist ------ please believe this is not the case.

 

This is also just my reading, but I do not read it as the family has "consulted" the 2nd doctor. It sounds like they had an informal conversation. It could have been very informal, it is hard to say. It could have been a limited description mentioning only a couple of issues.

 

So I do not really understand why people are saying "they have consulted two doctors." It just does not come across like that to me.

You are right. From what the mom said, they have not consulted two doctors. One doctor happened to be someone they know who mentioned that his own kids are different.

 

Thank you for your perspective. I agree that the best way to mention something is if it comes up naturally in conversation.

[Ausmumof3]

I have seen similar issues twice now in different families, and it makes me sad. I've never been clear on where the harm is in further evaluation. Pretty sure I offended once by saying that to one of the moms, but I loved her girl and didn't understand why mom/dad weren't seeking ways to help her with her struggles.

 

Maybe it's a personality difference? I would have freaked if a medical professional had been "pushy about autism" with me and would have done whatever I could to sort out if there was a problem.

I don't know that evaluation itself is harmful but I have seen one family put a massive amount of time and effort into speech therapy only to be told after a year of no progress that in fact it was the wrong type and totally pointless. While it may seem like it did no harm it took several hours of mums time from her family that could have better been spent elsewhere.

[PrairieSong]

I don't know about how many doctors have been consulted, but if I am reading the OP correctly, she last saw these folks a year ago, when the eldest child was 16mo and the youngest not even born. The parents have friends who have presumably seen the children more recently who say the kids are fine. The parents feel the kids are fine.

Actually I've seen them three or four times in the past year. When the little girl was 16 months old, they were at our house for several hours. The mom mentioned at that time that the doctor was keeping an eye on her to see if anything was going on developmentally. I just listened and didn't say anything about it then.

[Crimson Wife]

My child with autism hit all her physical milestones on the later side of the typical range, as opposed to her siblings who were early (DD1) and exactly average (DS). Now at 7 she has good fine motor skills and motor coordination but sometimes struggles with more complicated motor tasks, especially ones that involve sequencing (like riding a bike without training wheels).

[Lecka]

This is a tangent, but we moved when my son in question was 11 months old and it took us a little time to find a church and meet new people. The people I knew who told me later they wondered about mentioning something, felt like they had not known me long enough or well enough.

 

So I think moving and being in a situation where maybe you didn't start meeting people from Day 1 and then maybe you have know people for 6 months or a year ------ it just strikes me as a reason that maybe newer local friends may not say as much.

 

Personally it was harder for me to go out and meet a lot of people after we moved, too, bc I had 3 young kids and I was mostly watching my kids and not sitting back and chatting, just bc of needing to be more hands-on. So it did take me a little while after moving.

 

Basically, *I* didn't meet anyone who, a year or 18 months after we moved here, felt comfortable mentioning anything even after they did notice and wonder. But I guess we were still more at the acquaintance stage or the "I don't know her that well" stage or something.

 

I don't even really know.

 

But I am identifying myself in some ways with some of the things mentioned, whether that means it is really similar or not!

 

Bc, I do think this would have been different if I hadn't moved then. I had a lot more of a social circle from when I only had once child, and it was very hard for me to come anywhere near getting that back, with 3 little kids, after I moved. I had a lot of feelings like I was too busy with my kids and couldn't even socialize much even when I was at a social, little-kid friendly thing, where, if we hadn't moved, I would have already known people.

Edited February 29, 2016 by Lecka

[Jean in Newcastle]

It sounds to me like you responded well to the mom. Now the ball is in their court to either pursue further evals now or to let it ride. It sounds like you are a good friend. It is hard sometimes to let it go once you've given advice.

 

 

Sent from my iPhone using Tapatalk

[Corraleno]

While its reassuring to hear stories about kids who seemed "behind" as babies or toddlers and who turned out just fine, there are also stories where the results were not so happy. Unfortunately, those people are far less likely to talk about them because there tends to be a lot of guilt about having waiting too long.  :sad:

 

I have a relative whose middle child showed signs that, to me, clearly indicated problems — passivity, lack of eye contact, repetitive behaviors, way behind in speech, limited attempts to communicate. I gently brought up the idea of getting an evaluation for ASD. At first they insisted that she was just a bit "behind" because the mom didn't spend enough time talking/playing/reading with her. After another family member mentioned something as well, they asked the ped, who assured them that she was not autistic, because "autistic kids sit in the corner and bang their heads, and C. doesn't do that."  :cursing:

 

It wasn't until the issues with the youngest child could no longer be passed off as "just a little behind because he's so big, doesn't get enough attention, etc.," that both kids were properly diagnosed and started intensive intervention. They are both significantly impaired and mostly nonverbal. Would it have changed the outcome if these kids had been properly diagnosed and had started therapy at 1 and 2.5 instead of at 3.5 and 5? We'll never know. But when another relative started seeing things that were a bit "off" in her daughter, she was very proactive. That child was in early intervention by the age of 2 and is now (13) doing great. She's Aspie but very bright and functions well in mainstream schools.

 

Also, just a note regarding the comments that European or UK pediatricians are more relaxed about these issues and less likely to recommend testing and intervention. I lived in the UK for 10 years; DS was born there and lived there until he was almost 7. One reason they are more "laid back" is because (1) the early intervention services are not nearly as widely available, so there's really no point in assessing kids early if there aren't any programs to refer them to, and (2) some peds do not "believe" in things like ADD, LDs, SPD, etc. Our UK ped told me flat out that there was no such thing as ADD, and he didn't believe in dyslexia either — that was just a way for parents to demand special treatment for less-bright kids. Until about 20 years ago, most schools didn't recognize dyslexia as a "thing" — it wasn't until a student sued a school for graduating him when he was functionally illiterate that a law was passed saying students with dyslexia needed to be accommodated and provided with an adequate education. When I explained to my son's 1st grade teacher than he had trouble sitting still in silence for 6 hrs straight because of his ADD, she said "Oh, we had one of those before — that boy became a criminal."  :blink:

 

So I wouldn't assume that European/UK doctors are more "laid back" about developmental issues because they're more enlightened than US doctors. They may just be reflecting a culture where these issues are less prevalent and there are fewer options for dealing with them.

 

 

 

 

[Incognito]

Prairie Song - if you know that the mom has issues with depression or other mental illness, then your observations and concerns may line up to the mom needing help.  Children of moms with depression can have that flat affect and can have problems when mom is not able to interact with them at a regular level.

[PrairieSong]

Prairie Song - if you know that the mom has issues with depression or other mental illness, then your observations and concerns may line up to the mom needing help. Children of moms with depression can have that flat affect and can have problems when mom is not able to interact with them at a regular level.

nm

Edited March 7, 2016 by PrairieSong

[MomatHWTK]

:iagree:

Not everyone is testing happy.  I lean more towards this approach.  I don't think they are doing anything terrible and reckless.  You have to just let other people parent their own kids.  The exception is stuff like abuse and serious neglect.  It doesn't sound like that to me at all.

 

[saw]

 

 

Also, just a note regarding the comments that European or UK pediatricians are more relaxed about these issues and less likely to recommend testing and intervention. I lived in the UK for 10 years; DS was born there and lived there until he was almost 7. One reason they are more "laid back" is because (1) the early intervention services are not nearly as widely available, so there's really no point in assessing kids early if there aren't any programs to refer them to, and (2) some peds do not "believe" in things like ADD, LDs, SPD, etc. 

 

This. Resources are limited so people have to be content with less help. My ds was recently diagnosed with a hearing loss. His UK school has no resources -- special ed teacher has no clue. He was referred to a government programme intended to provide support for such children, which was supposed to send in a specialist to the school to ensure that any necessary modifications will be made so ds won't miss out. I was sent a letter saying, oh, gee, sorry but we're understaffed so we're not sending anyone to the school even though three months ago we promised we would. To qualify for services, a child has to be seriously far behind the curve. A friend of mine has a dc with Down Syndrome. She told me that DC may not qualify for special education services because DC was too high-functioning. So she didn't do potty training with DC so that dc would get the in-school services she needed. 

[JFSinIL]

Ultimately, words about late bloomers turning out fine may only delay a parent getting a child assessed for a condition that may exist.   Time lost is lost forever, and IF the child has any condition that could be helped by intervention the sooner the therapy or treatment starts the better the potential outcome.  Those early years of language development are crucial. Severe auditory processing can mess up a kid's language development as much as being deaf.  In my kid's case, his hearing tests were always fine, so no one even thought to teach him any sign, much less look for or treat his severe auditory processing delay, until he was well over 5 years old.  5 years of no real language development  can not be recovered.  Even Helen Keller had 18 months of language development before she lost her hearing and sight. 

 

When another of my kids showed the same signs of auditory processing delay we knew from experience with the first child what we were dealing with., no time was lost, and she is now a freshman in college, on the Dean's list. 

 

Please folks, do not discourage folks from seeking help with tales of how fine your child turned out - odds are the child in question will be fine, BUT in case there is something amiss, the sooner it is caught and treated the better the outcome.  And if nothing proves to be wrong, then the parents can breathe a sigh of relief and not worry about it.  But why gamble on a child's future?

[DawnM]

Why is it such a big deal to be diagnosed now?  My son was diagnosed with Autism Spectrum Disorder at 14.  He is doing quite well and we allowed him to not have a label for as long as we felt we could.

[SporkUK]

Personally I'm on the side of more information when available, and like you OP I would have recommended getting the evaluations just to ensure I had all the information at that stage. From what you've written, what you said seems fine and hopefully she will take some of it on board. I can understand not wanting to do so though. I spent years in the eval-therapy cycle with my eldest, watched him regress repeatedly from bad therapy that was brushed aside by bad therapists and medical professionals.* Quitting that when he was 9 and focusing more on community connections with similar people was the best choice I made for him, but I still don't regret trying when he was a toddler. 

 

Whether early intervention helps depends on the child, the disability, the therapist(s), the type of therapy, and several other variables beyond early or not including how one defines help. There is currently a major issue with autistic and other developmentally disabled teens/adults and very poor mental health linked to some popular forms on early intervention (particularly ABA and other Lovaas/compliance type training and even more particularly the usage of it for hours at young ages. I've seen 3 year olds with over 40 hours a week therapy schedules with adults wondering why there is an increase in meltdowns and disconnection). Early access to alternative communication devices and sensory help devices have strong evidence of better emotional and social skills and better mental health but are harder to access for many reasons including cost and the strange idea still around that using a device [or signing] will make them "work for it less". 

 

* By bad in this case, I'm talking about therapists like a language therapist who ignored the head of the SALT department's and my plan for helping him understand, answer and ask questions to work for hours on identifying whether a cartoon character was male or female. He had to decide whether a boy or a girl would like something including a cassette walkman and a straight razor. She questioned him on whether a girl would like a computer. I still do not get how learning gender stereotypes was meant to help anyone, but her attitude towards O caused a lot of language regression. I also had a pediatrician who refused to think autism was real or that language issues could run in families, but my having an US accent could cause speech delays. 

[SparklyUnicorn]

 

 

* By bad in this case, I'm talking about therapists like a language therapist who ignored the head of the SALT department's and my plan for helping him understand, answer and ask questions to work for hours on identifying whether a cartoon character was male or female. He had to decide whether a boy or a girl would like something including a cassette walkman and a straight razor. She questioned him on whether a girl would like a computer. I still do not get how learning gender stereotypes was meant to help anyone, but her attitude towards O caused a lot of language regression. I also had a pediatrician who refused to think autism was real or that language issues could run in families, but my having an US accent could cause speech delays. 

 

That is so stupid....

[bettyandbob]

The OPs scenario isn't about whether her friend knows there might be a need for evaluation.

 

This isn't about having more information or knowing about early intervention. The friend has seen doctors.

 

The friend has verbally said she doesn't agree there's an issue. She appears aware of resources she could access.

 

Since the friend has already been made aware of OP's, OP should step away from pushing it. What OP doesn't know if friend is keeping her out of the loop about actually following up on evals and therapy. That process is exhausting. And even normally open people take a long time to share that pain.

 

Friend knows what OP thinks. OP has done the most she should do with the info she has at this point in time

[Innisfree]

Why is it a big deal to be diagnosed now?

 

Well, for some kids, I guess things can turn out fine without a diagnosis. Autism is a very wide spectrum, and I'm sure with other conditions there is also a wide variation in severity.

 

But for other kids, every month lost can be critical. As already stated, time lost to develop language skills is time which can't always be easily recovered. Effects of one relatively minor problem can start to cascade as language isn't learned, social skills don't develop, frustrations build, emotional coping skills can't handle frustrations, family dynamics are affected, and friendships can't happen.

 

I could write a book about the familial consequences of a child who can't handle her emotions, but I won't here.

 

The earlier a diagnosis is made, the faster treatment can begin. For the children who need it, the importance of that cannot be overstated. For the children who would have done fine anyway, no harm is done by identification and treatment.

 

In some states, including mine, state law does not require insurance companies to cover ABA therapy-- the gold standard, evidence-based therapy for autism-- if a child is diagnosed after they turn some legislated age: for us it was six. So if time passes and things get worse, and you finally decide you need help, it may be impossible to pay for it. ABA can easily cost tens of thousands of dollars each year.

 

A diagnosis does no harm. A label does no harm. Your child will be just as loved, just as capable, have just as many opportunities with a label as without one. You can choose the people with whom you entrust this information.

 

But a label will give you knowledge that you need to help your child. You can address problems early, before they cascade out of control. You can help your child reach his or her full potential.

 

DawnM, please understand I'm trying to answer what I think was a genuine question on your part, not directing any anger toward you. I still have a lot of anger over how things have played out in our household, because I have experienced the harm of a late diagnosis in the devastation it has caused in our family. I'm holding my breath and hoping we've gotten to a better, stable place right now, but it's been hard. So I'm afraid that particular question brings out a vehement response, but it isn't personal.

 

AFA the OP, it sounds like you're doing what you can. Provide support for the mom as she wrestles with this, be a sounding board and a kind friend, if possible offer to help her get to appointments, and be there when she's ready to accept help.

Edited March 1, 2016 by Innisfree

[Innisfree]

SporkUK, that's awful about the ABA you encountered. I agree not all therapy is good, and parents have to use judgement about what will be best for their kids. I just think knowledge is better than ignorance.

[Crimson Wife]

Why is it such a big deal to be diagnosed now?  My son was diagnosed with Autism Spectrum Disorder at 14.  He is doing quite well and we allowed him to not have a label for as long as we felt we could.

 

A formal diagnosis is typically required to get services funded through insurance, EI/the school district, the Regional Center/Dept. of Developmental Services, etc. No one quite knew exactly what was the issue with my SN child when she was a toddler so her initial diagnosis was "Global Developmental Delay". Later that got changed to autism and still later, she received additional diagnoses of ADHD and progressive hearing loss. But she needed a label, even a placeholder one of GDD, to be able to receive therapy and other services she needed.

 

[Crimson Wife]

 . There is currently a major issue with autistic and other developmentally disabled teens/adults and very poor mental health linked to some popular forms on early intervention (particularly ABA and other Lovaas/compliance type training and even more particularly the usage of it for hours at young ages. I've seen 3 year olds with over 40 hours a week therapy schedules with adults wondering why there is an increase in meltdowns and disconnection).

 

Modern ABA therapy is VERY different from the kind Dr. Lovaas was doing back 20 years ago. If you saw my daughter working with her ABA therapist, you'd probably just think she had an awesome nanny who really knew how to use play activities to teach language and social skills like turn-taking, following directions, etc. It's definitely not flashcard drills at a table.

[PrairieSong]

The OPs scenario isn't about whether her friend knows there might be a need for evaluation.

 

This isn't about having more information or knowing about early intervention. The friend has seen doctors.

 

The friend has verbally said she doesn't agree there's an issue. She appears aware of resources she could access.

 

Since the friend has already been made aware of OP's, OP should step away from pushing it. What OP doesn't know if friend is keeping her out of the loop about actually following up on evals and therapy. That process is exhausting. And even normally open people take a long time to share that pain.

 

Friend knows what OP thinks. OP has done the most she should do with the info she has at this point in time

FWIW, I am not pushing it. This one time is the only time I've ever mentioned it, and only because she brought it up to me. I've had concerns before but didn't voice them.

 

As far as I know, they have only seen their own doctor, and he and his nurses are recommending further evaluation for autism which so far the family has declined. The other doctor is someone they know who said his own kids were different. I don't know what, if anything, he even said about friend's kids. It sounded like a casual conversation the way it was said to me. Also, I don't know that my friend is aware of resources they could access..beyond the evaluation that hasn't been done yet. She never mentioned any resources to me. So..you have some facts wrong. I think you may be mixing up some things I've said with what others have said.

[Monica_in_Switzerland]

Based on the info in post 72, it may be the child is just inadequately simulated due to poor education on the mom's part.  She may not know what a baby needs in order to develop well.  She may be spending too much time in restrictive "toys" (bouncy chair, play pen, stroller, car saet).  She may be getting fed jarred food rather than graduating to more mouth-stimulating finger foods.  She may not be hearing a lot of words from mom during the day because mom doesn't know the importance of "narrating" her day to baby.  Etc.

 

I'm sorry there is nothing more you can do.  I understand how frustrating it might be in your situation, to know a child could possibly benefit from interventions (either medical or from parents) that she isn't receiving.  I think it's important to know that the child IS going to regular health checks, and the mom IS at least percolating this information in her mind, otherwise she would not be bringing it up form time to time with you.  

 

Hang in there.   Sometimes being a helpless observer is so hard!

[Jean in Newcastle]

Hang in there.   Sometimes being a helpless observer is so hard!

 

To me, this is the point of this thread.  If the OP's friend were specifically asking for advice from us most of us would not tell her not to pursue evaluations esp. when the child's own pediatrician is urging it.  But what is the OP to do?  She's said her piece.  She may be able to slip in some more advice if and when the friend asks for it.  But there is a limit to what she can do without it becoming a sort of bullying which might drive the friend away for good. 

 

My anecdotal "evidence" goes both ways.  My nephew was born with Down's syndrome.  My brother and wife obviously knew that but were not pursuing any kind of schooling for him at first.  I wrote them a letter as to why I thought that he would benefit.  On one level it was pushy - after all, they didn't ask me to write them a letter.  On the other hand it was not pushy.  I tried to be respectful of their feelings and point of view and once it was sent, did not pressure them in any way.  A few months after sending the letter, my brother responded with a letter of his own detailing the things they were now doing because of my letter.  Reaching out respectfully helped, I think. 

 

I did not pursue evaluations with my own son with ASD until he was 16.  I knew from when he was little that he was probably Aspie (I know the diagnosis isn't given anymore but it fits him best and I choose to use it as a describer).  I worked with him accordingly.  The neuropsych did not give us anything other than a very expensive label that we wanted for the purposes of college.  Everything he recommended doing with him were things that we were already purposefully doing.  I did have people (but not the doctor) urging evaluations earlier in his life.  They could give me no reason for why other than for the purpose of getting a label.  We considered it but made our own decision.  Those who were too pushy are not close to me anymore.  Those who were respectful, even if they might have done some things differently, are still friends. 

[Arcadia]

Why is it such a big deal to be diagnosed now? My son was diagnosed with Autism Spectrum Disorder at 14. He is doing quite well and we allowed him to not have a label for as long as we felt we could.

Schools my friends kids went to push for labels to give services. I can get certain services from my school district if my kids have a label.

EI needs labels even if they are placeholders.

 

Insurance need labels too. Depending on which LD we are screening for, they may or may not pick up the tab.

 

A friend son has autism and is in public schools from K and now In 9th grade. She needs the label for EI then IEP. A neighbor's twins have autism, diagnosed at 18 months to qualify for services.

 

ETA:

Our screening bills were >$500 each before insurance paid part of it. High COL and we didn't want to go through the district for evaluation.

Edited March 1, 2016 by Arcadia

[Tess in the Burbs]

My first was slow to reach milestones.  People had me freaking out.  My Dr was the one who wanted to wait it out.  And had an end goal in mind in regards to when to pursue testing.  He finally spoke and walked.  His teeth were much later than other kids his age.  He's young maturity wise even now.  That is my boy.  

 

However, I do remember a lady in a baby group way back whose boy wasn't standing like the others.  He ended up having low muscle tone.  She went to the Dr b/c our group said to go ask.  Couldn't hurt to ask.  

 

If the family is ignoring the Dr that is different.  I would just encourage her to do what they Dr thinks.  Or get a second opinion.  And remind her if two Drs are saying something is wrong, it's time to get testing done.  

[luuknam]

Going off on a tangent here...

 

 

Early access to alternative communication devices and sensory help devices have strong evidence of better emotional and social skills and better mental health but are harder to access for many reasons including cost and the strange idea still around that using a device [or signing] will make them "work for it less".

 

Around Celery's 3rd birthday his speech therapist was talking about using some sort of alternative communication (PECS). I looked through journal articles and at that time the evidence was that kids using PECS made greater advances in communication skills, but smaller advances in speech skills than the control group not using PECS. So, since Celery was talking somewhat (at least 18 months behind in speech, but still, talking somewhat), we opted to not try PECS at the time, and now he won't shut up and has an above-average vocabulary for his age. As a side note, I printed out the studies I found for the speech therapist, as she was not aware of them. If Celery hadn't improved in speech we would have ended up using alternative communication at some point, but at the time we felt it would be better to have more progress in speech if it meant less progress in communication, than more progress in communication and less progress in speech, since speech is the primary way most people communicate.

 

Obviously, that was 5.5 years ago, so newer studies may say something different... just that deciding whether to use alternative communication is a tricky decision that should probably be made on a child-by-child basis.

[heartlikealion]

Heartlikealion....evals almost everywhere for the 0-3 crowd are free through Early Intervention. Cost should not be a concern at this stage.

 

For thinga like hearing and vision and many developmental delays treating it earlier rather than later is better. With autism for sure.

My ds is 7 and this is around the age they would be able to test I think (ADHD, auditory processing, and/or other things).

[sbgrace]

I didn't read most replies OP.

But I'll say a couple of things.

First, it's ok to let parents come to realizations when they are emotionally ready to see things. It doesn't sentence a child to irreparable harm if interventions are delayed. Brains don't slam shut at certain ages and refuse to grow. This is assuming there really is an issue, and that doesn't seem certain.

 

Second, the conversations with people who initially mention delays to me are seared in my brain. Most of those, nearly all, are not good memories. She's confiding in you. You care about her. I wouldn't want to be a negative memory. Her doctor sounds like he is handling this side of things.

 

If she were my friend, I'd give her support and space.

Edited March 2, 2016 by sbgrace