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*sigh* I'm just so frustrated....


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So, DD9 had her appt with a new psych about testing.  I'm getting pretty frustrated with this stuff.  

 

She was receiving speech therapy until two weeks ago.  Thank goodness I had them checking into something and found out that they have basically stopped covering anything towards speech therapy for "developmental" issues.  So, unless she gets an autism diagnosis, no speech or occupational therapy will be covered until we hit our in-network deductible at a cost of $200 per session.  Bye-bye speech, bye-bye occupational therapy eval for dysgraphia.  DD has a brother with dyslexia/ADHD (his psych thinks possible autism) and 2 cousins with an autism dx, one of which is also ID.  

 

Saw psych.  Of course, it has to be difficult.  All psych is out of network with a $3k deductible.  Insurance won't even confirm if they'll pay anything towards services until the doc files charges with them.  Doc says if we do self pay we can get a 20% "discount" on services, but if we file on insurance to see what they'll pay we no longer apply for the discount even if insurance won't pay a penny.  

 

On to the appt....

 

We go through DD's history and issues.  Psych did all her doctoral work on psych issues of low birth weight babies.   DD just so happens to be a 28 weeker born between 2 - 3 lbs.  Psych has already stated autism dx isn't on the table.  Basically all her issues are related to effects of low birth weight and with a lot of them you see a lot of the same traits as autism but they aren't autism they are caused by different reasons.  She also said her previous testing (WISC 4 and WIAT) was worthless.  Other highlights include;  1) phonics is overrated, its only useful for new words (when told DD can't reliably decode past the basic consonants and a, e, i)  2) spelling is visual and trying to get her to be able to write down the letters that make the corresponding sounds does years of damage to spelling instruction and past 2nd grade spelling practically nothing is phonetic anyway (lets just ignore the fact that she can't spell very basic words, like blaze, with any confidence on her own, even though she's spelled it a lot she just needs to see it enough?  Is 30 times in the last month enough?) 3) suggested we use a math program that would give her 100 problems, timed, and if she didn't complete it she was supposed to repeat it until she did (DD is 3rd grade....she has a daily 45 minute minimum meltdown over being asked to do 5 addition within 20 problems because she "forgets" how to do problem 4 & 5 after doing 1 - 3 correct).  

 

She wants to do a Woodcock-Johnson.  

 

I'm just not sure what to think......but I'm for sure getting frustrated.

 

Stefanie

 

 

 

 

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Your psych is a joke and has no clue what they are talking about.  I am sooooo sorry you are going through this!  What a mess.  I don't have a good suggestion at the moment but I sure hope someone else does.  In the meantime I am sending you tons of hugs and support.   :grouphug:  :grouphug:  :grouphug:   That's awful.

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I would definitely leave a fair review anywhere I could find to leave a review.  I don't know how many people read reviews of doctors, and I've never used a psychologist so I don't even know if they have places to review online, but personally I always read doctor and doctor's office and hospital reviews before I choose a provider.  Your experience, as frustrating and useless as it was for you, could actually be really useful for someone else in the future.

 

That's pretty funny about the 100 problems suggestion.  Does this lady even know any real kids?  Mine are largely NT and gifted and just doing 100 math problems over and over would not have taught either of them anything; if it ever did, it would be by the most inefficient method possible.  This is like telling someone to just get in the car for the first time and drive to Wal-Mart, no instruction or demonstration or safe practice or working on one thing at a time needed.  If you don't make it to Wal-Mart, get another car and try again!

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This is who my pediatrician/insurance sent me to via referral.  I don't discount that her low birth weight is probably a factor in some of this.....but.....

 

OneStep....she's a professor of psych with the local state university.  

 

Story - I may let her do the Woodcock-Johnson and CTOPP if she'll run it and take the results elsewhere for a second opinon. I'm going to have to pay for them no matter where I go.  She wanted to see the speech therapist report, which I thought I had but didn't, before committing to the CTOPP or other language testing.  That is fair enough I suppose.  DD is very verbal, but her academic scores from the previous testing are all over the map. 

 

ananemonae - the math program is actually a well respected math tutor/enrichment "program" I just wanted to leave out specifics.  She suggested that it would help "train" attention.  I just feel like a psych should have a better suggestion for that than to do something that I'm telling her produces daily tears and power struggles on steroids.  DD has no problems with concepts....she has problems with mechanics.

 

There is one other resource I know to try....the local autism resource clinic.  I've already been having run ins with DH about 'diagnosis hunting'.  But even he is to the point that he agrees we shouldn't have to come unglued on DD to get through to her that she needs to respect boundaries and it isn't just a lax parenting thing on my part.

 

I told the psych about an incident from two weeks ago where DD was asked to be quiet so someone could hear something.  Every time she was asked she didn't stop making the noise, or get quieter, she just switched noises.  I took a complete meltdown hissy-fit from my husband to get her to go "okay, fine, I'll be quiet" and actually be quiet, after she spent 10 minutes begging for "one more chance" even when explained the "one more chance" was 8 requests to be quiet ago.  The pysch basically said because she "could" get quiet, or she could be still (after severe enough consequences/meltdowns from us) that it was willful not an inability and so not autism. 

 

Stefanie

 

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I think you need to find a different psych!

 

Ask around, find someone who is experienced with autism and co-morbid issues.  If you are paying for this, you want to be paying someone who really understands the things they're evaluating.

 

As for insurance, here is what I did.  I asked the psych's office what CPT codes they use to bill for the evaluation.  Then I called my insurance company to see if those codes were covered services (and you will want to ask specifically if they are covered when billed by out-of-network providers).  And I asked for the rep's name, and a reference number.

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This is who my pediatrician/insurance sent me to via referral.  I don't discount that her low birth weight is probably a factor in some of this.....but.....

 

OneStep....she's a professor of psych with the local state university.  

 

Story - I may let her do the Woodcock-Johnson and CTOPP if she'll run it and take the results elsewhere for a second opinon. I'm going to have to pay for them no matter where I go.  She wanted to see the speech therapist report, which I thought I had but didn't, before committing to the CTOPP or other language testing.  That is fair enough I suppose.  DD is very verbal, but her academic scores from the previous testing are all over the map. 

 

ananemonae - the math program is actually a well respected math tutor/enrichment "program" I just wanted to leave out specifics.  She suggested that it would help "train" attention.  I just feel like a psych should have a better suggestion for that than to do something that I'm telling her produces daily tears and power struggles on steroids.  DD has no problems with concepts....she has problems with mechanics.

 

There is one other resource I know to try....the local autism resource clinic.  I've already been having run ins with DH about 'diagnosis hunting'.  But even he is to the point that he agrees we shouldn't have to come unglued on DD to get through to her that she needs to respect boundaries and it isn't just a lax parenting thing on my part.

 

I told the psych about an incident from two weeks ago where DD was asked to be quiet so someone could hear something.  Every time she was asked she didn't stop making the noise, or get quieter, she just switched noises.  I took a complete meltdown hissy-fit from my husband to get her to go "okay, fine, I'll be quiet" and actually be quiet, after she spent 10 minutes begging for "one more chance" even when explained the "one more chance" was 8 requests to be quiet ago.  The pysch basically said because she "could" get quiet, or she could be still (after severe enough consequences/meltdowns from us) that it was willful not an inability and so not autism. 

 

Stefanie

I suspect I know what math program you are referring to.  It is only well respected among some circles and it only works for some kids.  Even if it isn't the same program, I would still find her idea to be a very poor plan.  Many kids would struggle with that type of approach.  Is the goal to ensure that children come to loathe math, maybe even develop PTSD with regards to math?  

 

I don't care what her title is or where she works, while maybe some of these issues are tied to low birth weight (I wasn't disagreeing with that as a possible factor) her statements regarding many things are not based on fact or scientific research or current experience/results.  She doesn't seem to have any flexibility in her thinking.  Her statements are not true across the board for all kids in any way, shape or form, especially regarding phonics.  She seems to have some pretty rigid, limited thinking and I am not at all impressed.

 

I really think you are better off finding someone else.  I know that means more time and more frustration and no guarantee that the next person will be better but there are so many red flags here.  Maybe the autism clinic would be a better option. I don't know.  But honestly I am not impressed at all with this woman.

 

(For what its worth, her title and position do not automatically mean she knows what she is doing. I have met too many professionals who felt they knew it all when in fact their data was flawed, outdated, or out and out wrong.  My kids were both misdiagnosed over the years because of professionals that did not keep up with current scientific research or available information regarding various learning challenges and were too inflexible to admit when they were wrong.  I no longer trust ANY professional completely until they have shown their worth.  She has not.  She has made several statements that are not based on fact.  Her practical knowledge and experience with regards to these things seems very narrow and limited.  You have now had multiple people post with concerns.  I really wish that were not the case.  It would make life easier.  But I would not trust anything she has to say.  I would look elsewhere.)

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I don't trust, that is why I posted.  Some things make sense...the educational stuff not so much, but the visual spelling method she suggested does actually work better with DD, at least temporarily.  I know several other people with autistic kids.  DD is already in a social skills class and the teacher does in-home behavior counseling.  Her teacher is autistic and has multiple autistic children and has offered to fill out a behavioral questionnaire for her if needed (this psych didn't even bring it up).  They all think DD shows enough traits to warrant a serious look at autism.  I just can't seem to find anyone who is willing to take a serious look.

 

I have few options.....

 

1) this local clinic which is at a place where I've had a bad run in before (blew off a sensory eval because they knew my insurance wouldn't pay for treatments before they even did the eval)

2) my aunt knows someone who runs an autism clinic in a city 4 hours from home (a long way) but because it's a big city the quality may be better and because they know my aunt, they may take more time to look

3) another local psych....very expensive and no guarantee they are any better than the other one.  

4) the university the current psych is affiliated with.....and to some extent being a "learning opportunity" for someone.......

 

Stefanie

 

 

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I think you need to find a different psych!

 

Ask around, find someone who is experienced with autism and co-morbid issues.  If you are paying for this, you want to be paying someone who really understands the things they're evaluating.

 

As for insurance, here is what I did.  I asked the psych's office what CPT codes they use to bill for the evaluation.  Then I called my insurance company to see if those codes were covered services (and you will want to ask specifically if they are covered when billed by out-of-network providers).  And I asked for the rep's name, and a reference number.

 

I don't think they'll cover it at all honestly.  They barely covered anything before ACA.  The office person at the psych office called them and asked that today and they wouldn't confirm or deny any coverage but that I had a $3k deductible to be met first and I'd still have to pay 50% after that......

 

Stefanie

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I don't trust, that is why I posted.  Some things make sense...the educational stuff not so much, but the visual spelling method she suggested does actually work better with DD, at least temporarily.  I know several other people with autistic kids.  DD is already in a social skills class and the teacher does in-home behavior counseling.  Her teacher is autistic and has multiple autistic children and has offered to fill out a behavioral questionnaire for her if needed (this psych didn't even bring it up).  They all think DD shows enough traits to warrant a serious look at autism.  I just can't seem to find anyone who is willing to take a serious look.

 

I have few options.....

 

1) this local clinic which is at a place where I've had a bad run in before (blew off a sensory eval because they knew my insurance wouldn't pay for treatments before they even did the eval)

2) my aunt knows someone who runs an autism clinic in a city 4 hours from home (a long way) but because it's a big city the quality may be better and because they know my aunt, they may take more time to look

3) another local psych....very expensive and no guarantee they are any better than the other one.  

4) the university the current psych is affiliated with.....and to some extent being a "learning opportunity" for someone.......

 

Stefanie

I'd be sorely tempted to go to the bigger city, but I know that can be very challenging.  I'm sorry you are so stuck right now.

 

As for spelling being very visual, for a lot of kids it absolutely can be a strength to spell visually.  Absolutely.  But for some that visual image only sticks temporarily.  And the rest of her statement is just flat out incorrect.

 

"1) phonics is overrated, its only useful for new words (when told DD can't reliably decode past the basic consonants and a, e, i)  2) spelling is visual and trying to get her to be able to write down the letters that make the corresponding sounds does years of damage to spelling instruction and past 2nd grade spelling practically nothing is phonetic anyway"

 

Do some kids do poorly with phonetic instruction?  Yes.  Is spelling only visual?  No.  Does phonetic spelling do years of damage?  Not even close.  And that statement, along with the garbage about spelling past 2nd grade is not phonetic, makes me mad.  She is so way off base it is baffling.  Those statements alone indicate she really has no clue what she is talking about.  That kind of ignorance would have me seriously shying away.

 

FWIW, my daughter tried "visual spelling" for years in school.  We wasted most of her elementary years trying that route, listening to this kind of garbage and I bought it.  I didn't know any better.  In 6th grade I started DD on a phonetically based program, going all the way back to the very basic building blocks of language.  She was highly articulate.  She just couldn't read well or spell much of anything correctly.  She went from barely spelling at a sort of Kinder level in 5th grade to passing 2 criterion referenced spelling tests with a 100 and a 99 without studying the lists at all just a year and a half later  The improvement occurred entirely from doing a phonics based reading and spelling program.  What I wouldn't give to have all those years back, to erase all the tears and the stress.  And she absolutely is learning and internalizing rules of spelling that apply to 9th grade and above level words, not 2nd grade words.  

 

As for the fact that this woman did her doctoral work on psych issues of low birth weight babies seems to me to indicate that her push that the issues you are seeing stem entirely from this one issue are really coming from her very limited view, not necessarily from any basis in fact.  This is her comfort zone, her area of expertise.  She is unwilling to look past it.  That is also a serious concern.  You need someone with a wider area of experience and a more flexible approach to evaluations and possibilities.  

 

Hugs, best wishes, and good luck.  

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Wow, she sounds terrible!

 

This is my personal opinion on autism.

 

I have an impression that a lot of homeschoolers don't get a fair eval because they are providing supports that aren't recognized/documented as supports, and they have their kids do things where they are successful.

 

So then it is like -- "well we would see more problems."

 

But that isn't fair, bc my son (public school since special needs pre-school) has got supports in place now so that he doesn't have certain problems either. But it is very known that he has those supports.

 

I would ask about it prior to your appointment bc there are probably going to be observation forms that are often filled out by a public school teacher. If you can imagine how she might be doing in a public school setting with no supports -- that is what needs to be reflected on your observation forms (at least a bit).

 

Or -- if she has supports -- document the supports.

 

I don't know the best way to go about this, but it is something to look into.

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I told the psych about an incident from two weeks ago where DD was asked to be quiet so someone could hear something. Every time she was asked she didn't stop making the noise, or get quieter, she just switched noises. I took a complete meltdown hissy-fit from my husband to get her to go "okay, fine, I'll be quiet" and actually be quiet, after she spent 10 minutes begging for "one more chance" even when explained the "one more chance" was 8 requests to be quiet ago. The pysch basically said because she "could" get quiet, or she could be still (after severe enough consequences/meltdowns from us) that it was willful not an inability and so not autism.

 

Stefanie

Bull. My 2 known spectrum kids can stop a noise, and even a stim with enough of a freak out from someone. My not diagnosed but clearly spectrum foster kid can also stop (though he's likely to escalate first). As can a spectrum friend of mine (who is huge on begging for chances well into the extremely beyond annoying range).

 

My daughter has a stim that grates on my sensory issues. She's able to change the stim around me to eliminate noises from it, but when alone, she goes back to her normal.

 

My son can be willful about a certain noise around my foster son. It's annoying, but an obvious mix of autism and "behavior." (He flaps and buzzes. Foster yells NO, my son will sometimes continue if he's in a this-is-my-house mood. Other times he buzzes once, foster yells to do it in his room {huge step of acceptance here!} and my son is in a good mood and doesn't continue poking the wasps. Lol)

 

To me, stopping a noise only after massive freak out sounds very much spectrum.

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What math program is being discussed here?

 

That type of attention training actually works quite well here.

 

Years ago my son could sit and complete 50 mixed math facts prior to our math lesson, and it carried over to other areas.

 

Right now he's down to *maybe* 2 problems before running off, and it shows everywhere that he's got nada for attention.

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What math program is being discussed here?

 

That type of attention training actually works quite well here.

 

Years ago my son could sit and complete 50 mixed math facts prior to our math lesson, and it carried over to other areas.

 

Right now he's down to *maybe* 2 problems before running off, and it shows everywhere that he's got nada for attention.

The issue is that the psych doesn't seem to have any flexibility in her approach. Programs of this nature CAN work well for some kids. They can be a nightmare for others. She doesn't seem to be listening to or respecting OP's feedback on her own daughter.

 

Timed anything would have utterly defeated my kids at that age. Especially when required to do 100 problems timed over and over until they got it within the time frame.

Edited by OneStepAtATime
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The issue is that the psych doesn't seem to have any flexibility in her approach. Programs of this nature CAN work well for some kids. They can be a nightmare for others. She doesn't seem to be listening to or respecting OP's feedback on her own daughter.

 

Timed anything would have utterly defeated my kids at that age. Especially when required to do 100 problems timed over and over until they got it within the time frame.

Oh I wasn't saying the psych was giving good info or anything. I'm truly curious about the program for my son. Lol

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The psyc not being willing to diagnosis autism in a child who was premature is not terribly unusual. I have been through that before and I was just a teacher working with the kid. Many people are hesitant to give the AU label if there is any other possible issue that could cause similar behavior. He was eventually diagnosed but we had to find a way to get him to a different team of experts which required a residential placement for a year.

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Amo - the program was Kumon math.  Lots of repetitive rote memorization drill worksheets.

 

City - I really feel like I was told, it looks like a duck, talks like a duck, and walks like a duck, but it's really a chicken in a duck costume.  Your kid has all the PROBLEMS of autism and needs the services of autism.....but because she was premature we just can't count it as autism so you'll have to do without the treatments for her problems (because no one will treat her without the autism dx).

 

She is not a mild case of problems.....none of her problems are what I would call severe individually....but she has a large range of symptoms where she shows some facet of presentation. 

 

Stefanie

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So, I talked with DD's speech therapist this morning. No further clarification from insurance so they are officially discharging her. I asked the therapist about the psych and her opinon was that she was very good, but she is more geared to adults and brain injuries. Maybe that is the direction this doc will go toward.....a brain injury.

 

And even more frustrating.....waiting to see if DH will have a job come tomorrow.

 

Stefanie

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Run away fast!!!

 

I would not have her do ANY testing because nearly all reputable psychs rely strongly on their interaction with the child during the testing to make other observations and notes and to interpret test results if there are subjective things that come up during the test that can give you a helpful perspective.

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So, I talked with DD's speech therapist this morning. No further clarification from insurance so they are officially discharging her. I asked the therapist about the psych and her opinon was that she was very good, but she is more geared to adults and brain injuries. Maybe that is the direction this doc will go toward.....a brain injury.

 

And even more frustrating.....waiting to see if DH will have a job come tomorrow.

 

Stefanie

Ugh! So sorry you have so much to deal with. Sending good thoughts your way and hoping for good things for you and your family. Hugs.

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To the op, I think your challenge is figuring out where your jump point is. If you've only had the intro appt, I would consider canceling the rest. If you've already signed a contract, you may be screwed. See what your options are.

 

I think your problem is two-fold. As Lecka says, you may not have enough people working with her to fill out the behavioral forms and get things completely diagnosed. Also, it sounds like this psych is a little screwball in the head on things. However it's ALSO true that we don't always like the answers we're given. It might actually be that everything is due to the prematurity. I don't know. And I agree it's not helpful to say well you're just diagnosis shopping, because you're NOT. What you're wanting are complete explanations that, in a reasonable way, explain what you're seeing. 

 

I would drive the 4 hours rather than paying $3-5K to a person who seems a little premature and presumptive in her approach. You're saying you're basically willing to throw away $3K rather than drive 4 hours. Please, throw that money to me, lol. I'd make you much happier than this psych will, lol. It's very possible you'll end up redoing the evals if you use this lady. Sure, she might be giving you answers you're not yet ready to hear, totally agree. But some of the things are odd. At the very least, you're clearly not working well together. You could simply *wait* a bit, call around, see if you can find someone you like better. If you're not locked in, that's what I would do. 

 

The issue is that the psych doesn't seem to have any flexibility in her approach. Programs of this nature CAN work well for some kids. They can be a nightmare for others. She doesn't seem to be listening to or respecting OP's feedback on her own daughter.

Timed anything would have utterly defeated my kids at that age. Especially when required to do 100 problems timed over and over until they got it within the time frame.

Ok, I almost never disagree with OneStep, but I'm going to clarify something here. Amo was saying they used the worksheets for compliance drills. My ds also has ASD, and I can tell you that's a real gig! We do some things that you'd be like oh gag don't do that to your super bright, 2E, blah blah kid. But we do them for the compliance drills. We do them because they have a clear beginning and ending. So you really have to look at the activity in context and see what it's doing to that particular dc. I totally, totally agree that long drills can be inappropriate for some kids. Like you don't see me having my ds do that, kwim? But maybe we could. Maybe if we got them super easy and found a way to eliminate the writing, it could actually be good! But we do like having things with clear beginnings and ends. We do need compliance drills with him, things where it's very easy to say yes you did what we asked and you did it with an appropriate attitude (without talking back or running away or...). 

 

What math program is being discussed here?

That type of attention training actually works quite well here.

Years ago my son could sit and complete 50 mixed math facts prior to our math lesson, and it carried over to other areas.

Right now he's down to *maybe* 2 problems before running off, and it shows everywhere that he's got nada for attention.

 

This is fascinating. Thanks for sharing.

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