More on language developement

ijack

I'm not sure I've ever shared this, but it's something our ST is working on.

She's following a group of preemies during their time in EI (birth - 3). She is hoping to find out if there is a recognizable pattern to their development because it differs from f/t babies. Even adjusting for age, preemies don't seem to develop their speech in the same pattern, which makes it hard to say what is "normal" for a preemie. Like for example a f/t baby starts using words, gets 50 words, starts using 2 words together, gets x more words and then uses 3 words together... preemies don't develop like that usually. She's not sure why it is, which is why she's trying to study them more closely. She's following all different sorts of kids... ones like Emma who are just delayed for their actual age and then ones who have no delay or big delays... hoping to figure it out.

Anyway, I think it's interesting and I thought I'd share

TriciaJoy

I'll be interested to hear her findings.

 I play a little on a micropreemie blog mom preemie board and a lot of us talk about "micropreemie syndrome." It just seems like a lot of our kids do things in a similar fashion. A lot of them get labeled as autistic, but doesn't quite fit the mold.

The DSM IV doesn't list sensory integration disorder seperately from ASD, for example. Preemies often have SID (as dx by an OT or development therapist or pediatrician) and then get dx as autistic.  But maybe the to things aren't always comorbid.

A lot of our kids talk later. crawl later, walk later, really struggle with feeding issues (beyond "just" a swallow problem, they seem to struggle with understanding when enough food is really enough etc)

Labels don't really matter. If they eventually label Robbie as autistic, we'll accept it and go on.. but my feeling really is that he isn't.. but certainly some of his issues look a lot like it (delayed development, speech, feeding) but there are some key areas that just don't (he adjusts fine to changes in routine, his social development is right on track, etc)

Of course, the good news is that it seems like a lot of the therapies that are beneficial in ASD kids also seem to benefit the preemies. (Floor time, hippotherapy etc)

But I think what happens a lot is the kids get an ASD dx, then they get a bit older, say 7 or 8 and suddenly it doesn't quite work out. Then they decide they weren't really autistic after all.

I don't know. Like I said, in the end, labels don't matter- therapies that work do.. but I don't think a lot of our kids are really well understood.

 I know that I was reading something last week about some studies on preemies and while they did show a lot of delays (IQ impacting) early- say before 5 or so.. the great majority of them didn't show delays when retested at age 8.

So we see a lot of statistics about preemies being impacted.. (those charts that say "90% change of survival, but 85% chance of long term issues) but those are based on evaluations done earlier.. when most kids actually DO eventually catch up. Just not "by 2" as a lot of doctors want to say.

 

TriciaJoy

wow. can I ramble or what? Sheesh. Sorry. I'm in a mood today.

 

Here's the article I was referring to:

https://pediatrics.aappublications.org/cgi/content/full/118/1/429

 

Specifically this portion:

The frequency of impairment has been distinctly overestimatedby some of the research that has analyzed outcomes far too earlyin the infants' lives.¹⁰ Only half of infants who are thoughtto have developmental delay at 20 months are cognitively impairedat school age. These overestimates of poor outcome are presumablythe source of much of the information used by Kaempf et al inconstructing their outcome grid.¹ Furthermore, infants who wereextremely preterm and survive have a good quality of life andadapt well even when disabled.¹¹ This does not mean resuscitatingalways and at all costs, but it gives us the responsibilityof remaining vigilant to our own biases. Consensus is not alwaysa good thing.

And if you want to get super nerdy (*ahem* me) you can follow the cited source over to the actual study:

https://pediatrics.aappublications.org/cgi/content/abstract/116/2/333?ijkey=005f1a7e71e5bdfb70c4668e6af7d4478783ee14&keytype2=tf_ipsecsha

 

MrsJRT

It's all so interesting...my brother is doing his PhD research on low birth weight babies and their economic impact (earlier studies show that these kids do not go on to college, etc.- and of course he is trying to prove that wrong)    I always have interesting conversations with him...his concentration is Health Economics...

I think preemie development is very interesting...Robinson has not developed in the normal stages....he won't do something and then all of the sudden he just does it- without the 'baby steps'....he never army crawled, just crawled.  He never took one step at a time- 1 day he was just walking all over the place.  The pedi thinks that his speech is going to be the...that he'll start with an explosion in speech and may just start talking in kind of sentences.   I've noticed that he already kind of does that..he prefers to say "i got it" or "you get out"- he has an affinity for phrases rather than just copying words back to you...

I'm a science nerd (major is bio and chem) so all of this stuff is really interesting to me to see how each one of these little miracles is unique and all of them seem to have their own curve...it's fascinating, from a scientists' standpoint....and of course, frustrating/rewarding/scary as a mother

ijack

TriciaJoy:

But I think what happens a lot is the kids get an ASD dx, then they get a bit older, say 7 or 8 and suddenly it doesn't quite work out. Then they decide they weren't really autistic after all.

This is REALLY interesting. I think you hear a ton about what special diets or therapies can "cure" autistic kids and most of the time the kid wasn't autistic to begin with.

Also to the PP about preemies just "getting it". That is such a preemie thing! It look me a long time to understand why she doesn't "work up" to something but ever since she learned how to bottle feeds it's just like something clicks and she eats, something clicks and she walks. It's so wild.

That is why I love this board... so I know that my kid isn't weird

TriciaJoy

JRT- Robbie's done the same thing. With the slowness, then leaps. He didn't army crawl either. He went from nothing to crawling. He literally just started rolling willingly a couple of weeks before he crawled. Once he figured out his tummy wasn't the 9th circle of hell after all, he flipped over, then got up on all fours, then crawled. Within a couple of weeks.

I mean, at his evaluation in mid September, he couldn't move at all. Not rolling, not scooting, nothing. Since then he has rolled over, butt scooted, got up on all fours, learned to sit up, crawl, cruise & took his first steps on Christmas Eve.

Same with speech. He had zero words and then in a week he had 5. And we've seen not real improvement since then.

I don't really know how. Maybe the brain maps new pathways to make up for what was lost/damaged/never developed during their birth & shortly thereafter, and once something "reconnects" the magic happens? I don't know. But it does seem pretty common.

TriciaJoy

ijack:

TriciaJoy:

But I think what happens a lot is the kids get an ASD dx, then they get a bit older, say 7 or 8 and suddenly it doesn't quite work out. Then they decide they weren't really autistic after all.

This is REALLY interesting. I think you hear a ton about what special diets or therapies can "cure" autistic kids and most of the time the kid wasn't autistic to begin with.

Also to the PP about preemies just "getting it". That is such a preemie thing! It look me a long time to understand why she doesn't "work up" to something but ever since she learned how to bottle feeds it's just like something clicks and she eats, something clicks and she walks. It's so wild.

That is why I love this board... so I know that my kid isn't weird

Yeah, crazyass Jenny McCarthy comes to mind. Was her kid really autistic and "cured" or was he "just" developmentally delayed and caught up. I'm not saying the things like food allergies & weird reactions to things don't happen, I know they do. But you know, if a kid is just on his own path leading to the same place other kids are going, maybe it's just that he finally arrived there.

With the kids with therapies who later get undiagnosed with ASD, did they really have ASD and the therapies fixed it? Just do enough to keep them from fitting the diagnosis? They never had it to start with and the therapies treated the symptoms that SEEMED to indicate ASD and now they're okay?
I don't know the answers.

I find it all really fascinating, too.

I used to soak all of this stuff up looking for hope that Robbie was going to be okay. Fortunately as time has gone on, I've realized Robbie IS going to be okay. It's just that okay might be okay* and that he might get where he's going a lot later than every one else.

And the really, the doctors just don't know everything.

Even at Robbie's last NICU follow up, the neo said he thought Robbie would catch up eventually. But he couldn't tell me when, and he couldn't point to any study that said so. It was just his gestalt (that's the word he used) that Robbie was going to get there, but in his own time.

Does it sting when I see kids his age running around, asking for what they want in words, eating and drinking regular food, doing things he should be doing? Sure. Everyone wants the best for their kids. But you know.... I love him how he is, too.

Yesterday when he drank from that sippy cup, I cried. I mean, I'm all choked up thinking about it now. What parent truly celebrates things like those who have had to work so hard for them? I do feel like I enjoy Robbie's progresses  more because it is harder for him.

lemen99

very cool!

MrsJRT

 I do feel like I enjoy Robbie's progresses  more because it is harder for him.

 

My thoughts exactly!

 

And Ivory...I totally agree with you and Trish on the ASD conversation.  My other brother is planning on doing research in that field (he's a family medicine resident) b/c he thinks a lot of kids are misdiagnosed and create this 'stigma' when in reality there is something else going on or the majority of the time, the kids are just a little behind developmentally.  It does seem ironic and interesting that most of the parents who have said that their kids were 'cured' all seemed to be cured around the same age...maybe everything just started to click- like our preemies.  Anyway, I could go on and on about these topics b/c it's so interesting to me and both of my brothers are doing research in the field.  Children really are amazing!

lstaylor73

Great post you guys!  And Trish I couldn't have said it any better.  They just get it, and we are able to appreciate the little things to a greater degree because we know the struggle and the alternative.  When we are having a bad day, I just have to take a deep breath and remind myself that it will get better, they will get there where ever "there" is, and they will be happy no matter what.  Kids are just amazing. 

ijack

What parent truly celebrates things like those who have had to work so hard for them? I do feel like I enjoy Robbie's progresses  more because it is harder for him.

 

So, so true!!