Did you guys have to become experts???

iVillage Member
Registered: 07-24-2003
Did you guys have to become experts???
5
Fri, 09-01-2006 - 7:38pm

I'm so lost. I got my reports from one set of experts and they don't really tell me anything useful except what they told me at they time...no autism, random LDs, talk to the schools. They did have some break downs of proficient and deficient areas though. When I take my dauther to a speech therapist today (recommended by experts) the speech therapist comes up with an opposite picture of proficiencies and deficiencies. Neither group #1 of expert nor expert number 2 has done much but gloss over areas of major concern like #1(why does "make believe" tend to consist of the same 10 sentences over and over and over again? And why even when we move on to a new topic say pirates to orcas are the 10 sentences eerily similar?) and #2(why despite excessively charming behavior with adults is she always playing alone at school when I pick her up?) and #3(why does she score in the 98 and 99percentile for anxiety and stress behaviors despite living in an incredibly stable, loving, ideal 2 parent household that all the friggin "experts" are touting at the moment? We work our asses off to make things low stress and happy for her, so something is *&^%$ going on that I need a real, competent, trained "expert" to explain to me!!!!).

I'm starting to wonder if the problem is these experts are using different vocabulary? Are they not using the same definition for receptive and expressive language? That seems to be the big problem. When they each describe the behavior they witness it seems congruent. When they show me numbers they very different. Maybe I should just take some classes in this stuff and do some of the tests myself so I know what the *&&^ they're doing.

And this speech path didn't even notice, until I pointed it out (and then there was the big "oooooo...yeaaaaa you're riiiiiight") that Kiv has hypotonia in her face, some tongue placement issues, a hypernasal voice, always breathes through her mouth and has an open bite. Somehow she missed all the mechanical/structrual stuff.

OT eval next! Two weeks. If it goes as well as speech my head should explode.

Oh...And I'm just going to tack this on. Kivrin is completely over the top because we leave on a plane on Sunday to see her Granny and "her" dog (the one that can generally handle actually playing with her) woke up paralyzed in the hind legs on Tuesday and is in doggie hospital and we still don't know if she'll be coming home. No more long weeks. No more long weeks. lol. sort of lol. just not a very humorous one.

iVillage Member
Registered: 03-26-2003
Fri, 09-01-2006 - 9:14pm

LOL, I can answer the question without even reading the post, yup.

Now to read the rest.

Yup, assessments are a pain in the tush to read and understand and I am completely sick of professionals not reading each others stuff, taking a look at the whole picture of the child, and actually looking at ALL the scores and not just the averages.

Go to wrightslaw and check out the article on understanding tests and measures. If you need more info on interpretting I have a fair amount of practice at that and will look at them if you like. my email is attached to my profile.

Renee

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iVillage Member
Registered: 07-24-2003
Fri, 09-01-2006 - 10:01pm

Thanks Renee. You've been a lot of help already. I'll take a look at wrightslaw and print out what I can for the plan ride on Sunday. If I'm still hopelessly confused I'll see how good the new scanner is at text recognition and send you a copy of the stupid report. I have to send some to the doctors that formerly dx'd her with ASD and PDD-NOS anyway, because I want their opinions. Besides there's a big section that seems to describe behavior that one clinician witnessed that I had described on another clinician that no one actually explained the "why's" of. That makes no sense to me.

Mary

iVillage Member
Registered: 03-26-2003
Fri, 09-01-2006 - 10:24pm

You should also be able to call who ever wrote the report and ask them tons of questions. I am notorious for asking psychs to explain what they wrote or different parts of tests and what it all means. But if you have the types that want to poopoo concerns then that can be tough and I have had much luck with them.

Which tests were done?

Renee

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iVillage Member
Registered: 11-07-2004
Sat, 09-02-2006 - 8:43am
All of it seems very hard for me to understand as well. Most of our experts were on the same page but it is still difficult to comprehend as someone who is not educated in this field. Although, I am not sure how educated in the field the experts are sometimes too. One thing that is difficult for me is that everyone is ok to diagnose him but no one can tell me as a parent what in the heck I should be doing.
iVillage Member
Registered: 04-26-2006
Sat, 09-02-2006 - 10:32pm

Isn't it funny that all of these experts can tell you what there "expert" opinion is, but never really know what to tell you to do to work on what they think is wrong?

I am a HS teacher, and I try my hardest to communicate with parents (who aren't paying $$$ out-of-pocket) and let them know what I see and what we ALL can do on our ends to help improve whatever may be the trouble...However, every "expert" I've spoken to hasn't been very specific when I comes to what I should be doing to help my son's social skills. The most specific was "Keep having play dates, bring him to the park." Um, okay, is there anything specific I should be doing there, sweetie pie? (that is what I want to say, but haven't yet).

I am seriously thinking about taking some classes at a college in MN that recently started an autism program for their special ed. licences.
I think I might recommend it to the autism teacher (sorry, expert) that Tanner had this summer. ;)

Rachael