GAH - develpmental pedi frustration. long. now what.

[lmh2402]

My travels down the road of EI and wondering what, if anything, is atypical about DS’s behavior is fairly well documented on this board.

So without rehashing the various issues that I was (still am) concerned about… I will move on to the current issue/annoyance du jour.

Back in late Nov/early Dec I made an appt with a developmental pedi b/c there was some behavior problems that I just couldn’t quite work out on my own and EI wasn’t giving me many suggestions that were actually helping.

DS had a pretty significant language explosion some time in late Dec/early Jan and things actually seemed to improve. Even my mostly oblivious DH noticed.

However, as with everything in life…there are backslides and DS was really sick last week. And his behavior was appalling.

So it seemed timely that we had this dev pedi appt. I had almost cancelled it b/c I wasn’t sure if I should keep it. EI is going to be phasing us out soon. It seems like everyone I talk to thinks he is a pretty typical kid. And I have often been left thinking that I’m just nuts. That I just expect too much. That I am unrealistic in my behavioral expectations of a toddler.

Anyway, I kept the appt b/c I had waited so long. And last week had been so hard...i figured, "hey, i have this appt. i've waited this long. i'll just keep it."

And I fully expected that I would go in there. She would tell me that he seemed perfectly typical and that I should go on my merry way.

But she didn’t do that. She said….”huh. he’s an interesting case. I can see why EI is phasing him out. It makes sense. They don’t know what, if anything, to do with him.”

She then went on to tell me that he seems unusually bright. And he seems like “a great kid who just seems to have…some odd things.”

Literally. These were her words. “odd things.”

And that those “odd things” might resolve themselves. And be nothing. Or maybe they are something.

And that I should go for another speech eval. EVEN THOUGH she told me in the next breath that his speech seemed really good. He spoke clearly. Had a lot of words. Seemed to understand what we were saying.

And then she gave me the names/numbers of two places that might recommend doing ABA therapy in a group.

And then she said she wouldn’t put him on the autism spectrum.

And then she told me that maybe, MAYBE if he was older she would see signs leaning toward Asperger's. BUT that he was “way too young” to diagnose with this. And that she wanted to be clear that she “was NOT saying he has Asperger’s.”

And she wants to see him again in 6-8 months.

I left with my head spinning. I was so confused I didn’t even know where to start with the questions I had. So I didn’t ask any. I just left.

I went home and started trying to set up the appts she told me to make – for speech eval and the other two places for group aba.

And they all said, “what’s the diagnosis?”

And of course, I didn’t have one.

I called and left a message explaining that I had been told I need a diagnosis.

And I just got a message back saying, “start with the speech eval. Hold off on the aba. The diagnosis for now is speech delay – that his expressive speech is greater than his receptive speech.”

YET, she told me how good she thought his speech was. That he “seemed to understand everything we were saying.” And that he “spoke so clearly.”

WTH?!

Why is nothing. NOTHING! Easy. Or clear cut.

SOOO….

1. is this kind of waffling/unclear answer thing typical?
2. any experience with receptive speech delays? Particularly in kids that don’t seem to have a receptive speech delay? At least to me he doesn’t seem to have this problem…but maybe I’m not equipped to really understand what I’m looking for. Or what I’m missing.
3. is there any chance that I should just leave this all alone and adopt a wait and see approach? I really wonder if I’m just making this all so much worse than it needs to be. Subjecting myself to mental torture for months. MONTHS. And yet I don’t seem to be getting anywhere… the best improvement we saw was when DS, on his own, had a language burst. So maybe I just need to leave it be and let him do his thing and develop and maybe, like DH keeps telling me, it will all work itself out?

(of course, I should say that when DH happens to be home for one of the epic fits, THAN he is all too quick to rant and rave tell me that DS “needs help.” Yeah. Thanks.)

Sorry this is long. And rambling. And maybe without a clear point. But any feedback would be appreciated.

[daisymommy]

ARGH. I'm sorry she waffled so much and was unclear. It seems *to me* like she sees something going on, but cannot put her finger on it, or label it (which often happens with children--sometimes it's a wait and see approach)--or she is afraid to freak you out...so the next best thing is to work on the problems you can help.

I used to do ABA with children on the autism spectrum. Hopefully it will be just the thing he needs!
FYI: ABA= Applied Behavioral Analysis http://www.brighttots.com/aba_therapy

[sste]

I am sorry is ABA a therapy directed at kids on the spectrum or at risk of being on the spectrum? If this was my child and there was any question s/he could be on the spectrum, I would do ABA. My understanding is that the frontiers of ASD therapy are now turning to therapy in the baby months and that the general sentiment is strong that earlier is better.

I would also do speech. I think the opposite pattern of receptive greater than expressive is not such a problem. But, I think receptive language is supposed to be very strong by toddlerhood. I am not a speech therapist though. We did speech therapy with my ds for almost a year and I distinctly remember my therapists harping on receptive language as a key prognosticator.

I don't think no diagnosis is unusual, means the dev. pedi is incompetent, OR means you should do nothing. I think she is telling you very clearly that there are aspects of your son's development that are clearly atypical but do not fall into one neat diagnostic pattern. It is a very hard thing to hear. (hugs)

[egoldber]

I'm sorry. It is veryyyyyyyyyy frustrating, My older DD is like this: elements of many things, diagnosable as nothing and yet is clearly different vs. her peers. Some things she has grown out of, but other issues have cropped up as she has gotten older. In the end, we treat the symptoms and do what we need to do (including a diagnosis that is not necessarily "accurate") to get her services and accommodations in school.

There are some kids for whom a diagnosis is clear and evident. But there are many, many, many of these "quirky" kids for whom no label really fits. And it is hard.

My best advice is to do one thing at a time. "The" answer may or may not ever be clear. It's a marathon, not a sprint.

[niccig]

For some things they can't give a diagnosis until they are older, as it's too early to say. I think ADHD, aspergers etc are ones that you have to be school age. We have friends that were very frustrated but at the end of K, they did get a diagnosis, prior to that no one could say for sure.

I think with receptive it means he's not understanding what is being said -maybe something to do with not processing what's been said.

I can understand that this is very frustrating. I would do the speech evaluation and look into ABA as well.

[pinkmomagain]

This is all bringing back memories when my dd2 was around 3 and had dev delays and lots of odd issues. It was so frustrating to be told that a solid dx could not be made at such an early age, yet so many therapies were suggested. DD2 puzzled several therapists and diagnosticians...and everyone had different theories about what her issue was (ASD, ADHD, dyspraxia, auditory processing disorder, etc.).

I would pursue any and all therapies suggested. They can't hurt and can only help. Sometimes I look back and wonder how much therapies played a part in my daughter's progress and how much was just her natural development...but I do have the peace of mind of knowing I did all I could at the time. ((HUGS))

[sidmand]

In the end, we treat the symptoms and do what we need to do (including a diagnosis that is not necessarily "accurate") to get her services and accommodations in school.

There are some kids for whom a diagnosis is clear and evident. But there are many, many, many of these "quirky" kids for whom no label really fits. And it is hard.

My best advice is to do one thing at a time. "The" answer may or may not ever be clear. It's a marathon, not a sprint.

:yeahthat:

DS was diagnosed with PDD-NOS when he was a little over two. I wasn't sure then (and am really not sure now) that that is the correct diagnosis, that it was EVER the correct diagnosis, and that it isn't the correct diagnosis now. However, there was something, not sure what, but something and that diagnosis gave us ABA and speech therapy and OT and PT and he thrived with all of those things. Without that diagnosis he definitely wouldn't have received ABA at the very least and that was a huge help. So although I don't think that diagnosis was correct, it gave us what we needed--did that make sense?

And I had him reevaluated recently by a neuropsych who said based on what he saw today he definitely couldn't say PDD--maybe Asperger's, but even that wasn't clear and we left without a definitive diagnosis. We just left it as is for now.

[egoldber]

With the speech, did she talk about pragmatics at all? Pragmatics is more the structure of conversation and reciprocity. That can be very difficult to assess.

[AnnieW625]

I can't really help you out much, but my DD1 couldn't speak well at all until she was almost three years old. She started at speech therapy (group) at 2/1/2 that we qualified through our local regional center. At our center EI services were guaranteed until they were 3.

Have you contacted your county or state dept. of health services in regards to a "regional center" that might be able to help you out with the EI stuff (or is that the EI program you already referenced)? One nice thing about our regional center is that there are no income requirements.

:hug:

[crl]

I'm sorry. It is veryyyyyyyyyy frustrating, My older DD is like this: elements of many things, diagnosable as nothing and yet is clearly different vs. her peers. Some things she has grown out of, but other issues have cropped up as she has gotten older. In the end, we treat the symptoms and do what we need to do (including a diagnosis that is not necessarily "accurate") to get her services and accommodations in school.

There are some kids for whom a diagnosis is clear and evident. But there are many, many, many of these "quirky" kids for whom no label really fits. And it is hard.

My best advice is to do one thing at a time. "The" answer may or may not ever be clear. It's a marathon, not a sprint.

This is pretty much our story too. I remember desperately wanting a dx because I though that would tell me what to do. I never really got one. We did the best we could with various therapies along the way. DS has done super well and is a pretty typical kid in most ways now, but I feel sure he will always be a bit quirky in some respects.

I would go for the speech evals and see what they say.

Catherine

[cckwmh]

your post made me wonder where you were located because the same exact thing happened with my nephew, including the same language by the Dr. "odd things" etc. (it was deja-vu - like it could have been the same MD). he was evaluated at 3, and was not given a diagnosis, but we were told he would likely be diagnosed with asperger's as he gets older. It is VERY frustrating. Luckily the school system he is in picked him up and he is making great stides, even without a diagnosis.

[annex]

any experience with receptive speech delays? Particularly in kids that don’t seem to have a receptive speech delay? At least to me he doesn’t seem to have this problem…but maybe I’m not equipped to really understand what I’m looking for. Or what I’m missing.

My DS (b. Dec 07, so a bit older than yours) started out with EI for an expressive language delay around 1 1/2. After not much help from EI (occasional drop in visits with a disinterested speech therapist), his expressive language caught up to his age around 2 3/4 and we almost left EI. However, it became apparent to me that he was still not quite "normal" for his age so the EI therapist ran more tests. Sure enough, his receptive language scores were like 5th percentile for his age. We were so focused on getting him to talk that we glossed over that he only talked about what he was interested in. And a lot of the language he does use is borrowed phrases from books and/or tv shows, which is another red flag we missed. He struggles to carry on a conversation (or answer questions) about things that someone else is interested in. Some of it is receptive language issues -not understanding some simple ideas like in/out, etc. And the other is the "pragmatics" that was mentioned by Beth above in terms of how to socially interact using language. It's possible that your developmental ped sees some early signs of those issues, and hence the referral to start with speech eval.

Since this is DS' only "spectrum" type behavior though, we haven't pursued any other therapy beyond speech at this point. I wouldn't be shocked to get a diagnosis/label down the line. But I will take what we have, and continue to take him to the services he qualifies for, since I think our current speech therapist is helpful.

Anyways, long response to the receptive language aspect. If you have a gut instinct that he is not typical for his age, I think sticking it out, even with some tests that you think may not be applicable, is worth the effort.

[Gena]

Hugs. :hug:

I'm sorry you found the appointment so frustrating, but in my experience your developmental ped is taking the right approach. Your DS is very, very young - not even two yet, IIRC. That's a very difficult age to determine an accurate diagnosis, except in the most obvious cases. (There are doctors who will diagnosis Aspergers in a two-year old, which is completely ridiculous.)

Two year olds are going through a huge developmental stage. It's really hard to tell at that age who is on the autism spectrum, who is a little quirky, who has some delays but will catch up with extra help, and who is just going through a phase. That's why it is important to have evaluations done over several months and to see what kind of development takes place in between.

DS first saw his developmental ped when he was a little over two and a half. He was already getting services from EI. He had just started to talk. DH and I did not think he was on the spectrum, but like you we said, "Well we waited this long for the appointment, we might as well go." The DP thought DS was very bright, but had some red flags. She ordered blood work, a hearing test, speech eval, OT eval, an EEG, and an eval by the child psychologist. In the meantime, she gave DS a diagnosis of mixed expressive/receptive language delay and she gave a provisional diagnosis of PDD-NOS. (A provisional diagnosis is a diagnosis the doctor provides while more testing is being one. It allows the child to qualify for services during the diagnostic process.) Six months later, after all the tests had been done, we saw the DP again. At that time, DS was given an official diagnosis of PDD-NOS. It was a just after his third birthday. (His diagnosis was changed to Autistic Disorder when he was five.)

Getting a diagnosis is a process. It takes a long time because a good developmental ped will want to monitor development over time and rule out other possibilities. It's an emotional roller coaster, but this way if/when you eventually do get a diagnosis, you can feel more confident about it. It's better than a doctor who doesn't know your kid at all making a quick diagnosis after one brief encounter.

I know you wanted to hear that your child is fine. And you are disappointed and scared because that didn't happen. It's OK to feel that way. It's OK to be uncertain. Do not mentally torture yourself over it. Do the speech and see if you can get the ABA. Find out if there is a group in your area that does the PLAY project (AKA Floortime). Find a local autism support group and ask the parents there about their experiences in getting a diagnosis. Your EI case worker should be able to help you find these resources.

[lmh2402]

thank you, guys

i actually don't...(yet?) feel upset or sad...maybe b/c i'm more confused than anything else.

and honestly kind of shocked.

i mean, i know...knew...know...that i feel/felt like something might be "off," but i've grown so used to hearing that i was making more of things

then we qualified for EI...but even that seemed to almost immediately start heading toward phasing out. like almost immediately i started hearing that they weren't sure if he qualified for services. the original EI plan was mostly for anticipated sensory issues. and then he seems to not have sensory issues. and at this point, i actually do agree with that assessment - the things i was concerned about sensory-wise have pretty much 80% improved.

re: speech, she didn't use the word pragmatic...at least not that i recall

BUT she was definitely talking about social use of language. and i know she was saying something about the possible groups that she was suggesting i look into...that they might help with social use of language

and she asked about eye contact. and i said that i wasn't sure what to consider typical. i actually planned to poll about that tonight b/c i'm really wondering what is typical for a 2 year old.

i actually called EI when DS was just shy of one...and one of my concerns at the time was he didn't really look you in the face. he would look over your shoulder a lot

and the EI evaluators at the time said they didn't see what i was talking about. and that it was fairly typical for a child to not be able to handle such up-close eye contact at that age

and he definitely did improve a LOT since then

but he still doesn't do a whole lot of up close face-gazing.

i mean he will...like when he's getting dressed after bath on his changing table we do lots of nose to nose kisses and talking and he's fine with that.

but when he's up and about, moving around. if you ask for a hug, about 50% of the time he gives a nice big bear hug. the other 50%, he gives this sort of one arm half hearted/pushing away...not looking you in the face at all... kind of hug thing.

not sure if that makes sense. but i mostly notice it whenever anyone else asks for a hug

other than me...occasionally DH...and my mom.

no one else pretty much EVER gets a real hug. or a look in the face up close.

he pulls away if people try.

is that the norm for this age?

ugh. anyway, thanks again. and i'm going to call and follow-up to get the speech appt tomorrow now that i have a dx i can give them in order to make the appt.

[Melbel]

I am sorry that the process is so frustrating. Medicine is far from a precise science, IME, and often feels more like educated guesses. DS received EI for expressive speech delay (caught up by age 3). We will never know if it was the therapy, or if he would have caught up on his own. Even if you do not see immediate/any results, at least you know you are doing everything you can. Therapy can't hurt, but it very well may help. I also found that his therapy helped to teach me how to better help him. You need to trust your mom instinct and keep up the good work. :hug:

[Indianamom2]

I'm sorry. It is veryyyyyyyyyy frustrating, My older DD is like this: elements of many things, diagnosable as nothing and yet is clearly different vs. her peers. Some things she has grown out of, but other issues have cropped up as she has gotten older. In the end, we treat the symptoms and do what we need to do (including a diagnosis that is not necessarily "accurate") to get her services and accommodations in school.

There are some kids for whom a diagnosis is clear and evident. But there are many, many, many of these "quirky" kids for whom no label really fits. And it is hard.

My best advice is to do one thing at a time. "The" answer may or may not ever be clear. It's a marathon, not a sprint.

This is very similar to what we are experiencing with DD right now. She has an occupational therapy evaluation (for sensory issues) at the beginning of April and then another developmental pedi appt. in mid-April, with the hopes that we will, now that she is quite a bit older, be able to more accurately get anything that needs to be diagnosed, well....diagnosed. She clearly has some issues, but they are subtle and they seem to evolve over time.

I think the speech therapy is a good start. Having BTDT, it definitely will not hurt and can only help. I don't know anything about ABA, but I'm of the opinion that trying it can't hurt, especially if you're not completely certain of what the problem may be.

Many :hug:, because this is not an easy path to travel and not everyone will understand. In fact, most won't. But I firmly believe that if your momma radar senses that there are problems....then you have to keep working as his advocate to help him in whatever way you can.

[jse107]

Many :hug:, because this is not an easy path to travel and not everyone will understand. In fact, most won't. But I firmly believe that if your momma radar senses that there are problems....then you have to keep working as his advocate to help him in whatever way you can.

Yes to this!