Cross post - need help thinking about testing (again!)

[SKL]

Hi guys.  This is a recurring issue for me as I never feel sure what's the right course of action.  Wish I had someone IRL who could help me decide.

My kid is 13, 8th grade.  She is a decent student - works hard, cares about her grades, has some real strengths to help shore up her weaknesses.  She's taken a variety of tests - the usual group tests that B&M students take, and a few short individual ones to test achievement vs. IQ.  I have tried for more comprehensive testing but get push-back from all sides.  PS she attends a non-public K-8 but will attend public high school.

Tests support my observation that she has siginificant trouble with reasoning / math concepts.  Her IQ is average per the tests.  She gets some tutoring at school, but it mainly just helps her get that day's homework done - it doesn't get to the root of the problem.

Other issues I'm seeing recently are possible OCD, anxiety, and maybe girl ASD.

My daughter has a life goal to be a veterinarian, thus she plans to attend college and needs to be successful at it.

This week after registering for the public high school, I spoke to the school psychologist, who is in favor of comprehensive testing, but can't do it until after school starts next year.  He said she is unlikely to get an IEP but might qualify for a tutor to work with her during math class (not clear on whether this would only apply to general math or also to algebra etc.).  He recommended Khan Academy and some other ideas (but my kid doesn't have time for more practice at home right now).  He was supportive of her college aspiration.  He also recommended that I talk to the elementary school psychologist to follow up on getting more testing done now.  I called around and spoke to the person who had worked with us in 6th-7th grade, and she had no idea why the ball was dropped on additional testing back then.  She gave me the contact info for the current psych assigned to our school, and said she would make a suggestion to give my daughter a more thorough math test.  I have not yet followed up with the current psych.  I don't know what, if anything, they will do for her even if the test has interesting results.  She really needs a tutor to take her back and shore up those weak areas.

I have asked my health care people about educational testing (in the past), but they say this is up to the schools.

This week my dd had a vision appointment - historically she has had significant issues with vision which made reading a lot of work.  I mentioned to the Dr. the idea of seeking a 504 plan for when she goes to high school - the public high school psych said if she has a diagnosis they would give her accommodations.  When I brought this up, the Dr. pushed back, saying it is not a good idea to give accommodations since the kids will not learn to work hard and accommodations will be harder to get in college.  He also indicated her vision is now fine, so I guess he isn't going to help, but the whole concept of "504 is not a good idea" requires me to think some more.

I spoke to my dd again about all of this.  She does not want any more extra help or accommodations in school.  (As far as the mental health issues, she is thinking about whether or not to go to a doctor.  I told her I will hold off for now and try some things at home, but I reserve the right to decide for her on this.  Though going to the doctor without her buy-in will not work, as she will deny everything like the last time I tried that.)

I think my kid will be an OK student in high school.  I don't know if she will have enough time / time management skills to do really well in college prep classes, but I think she will pass, keep sports eligibility, and get a diploma.  I want for her to be able to get into a decent college program though.  Not trying for fancy stuff, but something solid that will lead to a good job in her field of interest.  She is young ... I can't predict whether she will be independently studious or not.  I guess that is up to her ... but I just don't want today's choices to limit the future.

Can you guys help me think this through?  Should I just accept that it is on her to work her butt off if she wants to succeed in life?  Should I push for more testing even though her K-8 school recently told me it isn't available to her?  I don't want to limit her ability to take a college prep course of study.  I would rather she get a B- average in college prep than an A average in a non-college-prep program.  Maybe we just sign up for college prep 9th grade classes and see how it goes?  (By college prep I just mean algebra / biology etc., I'm not trying for honors except maybe in English.)

[freesia]

I would have her tested. I think it’s important information to have and she can chose not to use the accommodations if she wants, but if they are offered it is for a reason. It may also allow her the extra time on the SAT’s to get into a solid program. The accommodations just level the playing field—it’s important for her to know that. And your doctor is wrong. My dc with a LD is one of my hardest workers even though he gets the most support in my house.  You already see she works hard. But the stress she feels having to work so much harder may be part of what you see in the mental health area. Also, kids evaluated at this point are more likely to get accommodations at college. Some colleges are better than others at support and you’d keep that in mind. My friends with kids who need accommodations in college have been pleased. 

Have you considered going to counseling if she won’t?  The therapist can work with you on things to do with her to help. It worked amazingly in our family. And I know others who have done the same thing with good results. 

[Pen]

Speaking from perspective of a mom to a 17 almost 18 yo having troubles and having gone along with his refusal to get another round of testing as a tween, IMO have her get tested now.  She doesn’t need to use accommodations if she doesn’t want to, but having the option available is likely to be helpful. 

[PeterPan]

One, I don't get why the ps is screwing around. You have the FEDERAL RIGHT to have her disabilities identified, irrespective of where she is enrolled. Now it sounds like you made a request and they blew you off due to insufficient evidence. Now you have someone trying to help make it happen? If you can't make it happen, you can get private evals and then go back with information.

Your eye doctor does not tell you if she needs a 504. I've had $$$ neuropsychs give me incorrect info about IEP/504 eligibility. Certainly do NOT listen to an eye doc. That is out of his scope of practice.

Was that eye doc a developmental optometrist? Why have you not resolve the vision problems? My dd did VT and still has eyes that struggle to converge. We always take her to a developmental optometrist and they've kind of rotated through different kinds of scrips. I *think* she's currently in progressives. I know she's been in bifocals or progressives on and off for YEARS. Like since age 16. 

So that's thing one, get the vision therapy, integrate retained reflexes, and then do the rest with lenses and get that done. Whatever remains gets a 504, fine. But I don't see why she would need one. At this point, tech is so ubiquitous that nobody cares. Wanna use dictation, fine. Want text to speech, fine. But you don't know what she needs till you get things identified and treated.

4 hours ago, SKL said:

My daughter has a life goal to be a veterinarian

Did you already have a thread on that? I've been told that vet school is very competitive. The curious thing to me is whether the IQ score you got is accurate. Does she *function* like that score implies? 

4 hours ago, SKL said:

I spoke to my dd again about all of this.  She does not want any more extra help or accommodations in school. 

That's normal push back. Do you think there's also an anxiety element to it?

4 hours ago, SKL said:

As far as the mental health issues, she is thinking about whether or not to go to a doctor.

Uh yeah, that's really not up to her at this point. You have just a few years till she's 18 and can flat turn everything down. You would be EXCEPTIONALLY WISE to get her agreeing to go to evals. Or have her do them anyway. Every single eval. 

If you want the long term perspective, the things you REALLY should be concerned with are:

-anxiety

-social thinking

-employability

If ASD is on the table, employability is always a question, irrespective of IQ. Here's a document some teams will use to track skills for employability Indiana University › iidc › Webinars › Employability_skills_checklistEmployability/Life Skills Assessment  You can go through it yourself and see where she honestly is. That gives you sort of a road map on what to work on and what might hinder her long term. It doesn't sound like academics are necessarily her biggest worry.

4 hours ago, SKL said:

I would rather she get a B- average in college prep than an A average in a non-college-prep program. 

This doesn't always work out so well. Just saying. You want her learning and thriving. She might do better with the teacher or the group dynamic in one of the placements. I would just talk with the school officials and be flexible.

4 hours ago, SKL said:

Should I push for more testing even though her K-8 school recently told me it isn't available to her?

The ps is only compelled to eval if you can provide evidence (stories of what is happening, previous diagnoses, something) to indicate there is something happening that affects her ability to access her education. If she's getting Bs, chugging along, not complaining, not having issues socially, not melting down when she comes home, etc., I don't see where they care. That doesn't mean YOU shouldn't care, just that THEY don't have to care.

You should get private evals, sure. You have questions and they're best answered by an objective 3rd party that is trying to answer your questions. The school is only asking does she have something affecting her ability to access her education. You're asking what's going on, and those are different questions. Someone can have ASD and NOT qualify for an IEP or 504. Now technically, if there is ASD and you did enough testing, you'd find the areas, sure. But the odds of the school owning the testing? Ha, good luck.

So the better question is, what is your insurance, your funding, what can you make happen, how does this get done? If through the ps is the only way, then you have a long road. You need to provide evidence, fight for evals, and then file a dispute. If you have coverage or cash, then getting evals privately would be easier.

To help you prioritize a list for private evals, we would need a list of what's going on and what your funding options are. Sometimes there are creative ways to save money or stagger expenses.

[SKL]

10 minutes ago, PeterPan said:

 

So the better question is, what is your insurance, your funding, what can you make happen, how does this get done? If through the ps is the only way, then you have a long road. You need to provide evidence, fight for evals, and then file a dispute. If you have coverage or cash, then getting evals privately would be easier.

To help you prioritize a list for private evals, we would need a list of what's going on and what your funding options are. Sometimes there are creative ways to save money or stagger expenses.

Well, I could probably afford the private eval, but I don't want it to be a waste of money and emotional energy, and I don't know how to pick the right person.  I had a bad experience getting my other kid tested for something else.  Not only did it wrong, but made my kid feel like a turd.  So how do I not screw this up again?

List of what's going on -

• Math concept learning is slow.  She ends up memorizing repetitive steps to get the standard questions right & blows the word problems.  Then forgets much of what she learned.  But "computation" tests a bit above average.
• Reading speed is slow to average.  But reading comprehension is above average.
• Writing tests poorly.  Not sure if this is because she is slow or her school hasn't taught much.  She is fairly organized and articulate in general.
• Memory can be excellent or poor depending on ... something ... whether it's interest/attention or something else, I'm not sure.
• Homework regularly takes hours to complete & sleep often suffers.
• IQ has consistently tested right around 100.  I suspect it is a little higher.
• She has always been more of a planner than any other kid I know.  Wants/needs to know/predict/control what's going to happen.
• Kid has increasingly OCD type behaviors.  Repetitive stuff, taking forever (like an hour + per day) on her appearance, making rules that are not necessary.
• Kid doesn't like to be touched (except sometimes by me), has many sensory quirks, has inconsistent communication (often doesn't answer or walks away when spoken to), abhors change / surprises, still wants to believe her "bear" is real, has had difficulty sharing socially with certain adults.
• She has friends and is extremely aware of what other people are up to.  She is very loyal and caring.  But she needs lots of alone time too.
• She participates successfully in a variety of routine activities - school/church, sports, performing arts, scouts, family stuff.  She does have trouble with prioritizing.
• Generally not a fan of trying anything new.  Unless her role is mainly to sit and watch/experience.
• General attitude was sucky from age 9-12 but seems to be improving recently.

Based on past history, I think she will be "employable" despite certain inefficiencies.  Also, biology is one of her strengths, and she loves animals, so I think she can succeed if she sets her mind to it.  I just hope she doesn't give up because certain things will be hard for sure.  Knowing what can be done to address the specific issues would help.

[PeterPan]

The bummer about evals is some kids don't get very clear answers. She's probably on the spectrum, sure. But to get a girl diagnosed can still be iffy, even when it's glaringly obvious. 

And the trouble with the academics is you might not rise to an SLD. You might pay money for that and just get told she has a low processing speed, which she probably does.

So if you went with an SLP, could you get insurance funding? SLPs, unlike psychs, aren't typically arrogant or going to act like donkeys. If you got the right SLP (someone who actually owns the tests), they could run pragmatics, something for the writing, narrative language, the test of problem solving, and an EF=executive function test. Those things would probably all turn up useful data on her, things that are actionable, and in fact they would probably result in something the ps would actually DO something with. The ps will give you IEP goals for pragmatics, so low pragmatics scores will trigger that. Low writing scores on the SLP testing would trigger IEP goals. And so on. 

Unless you pay stinking boatloads of money (and even not then), the psych won't run all those and you'll just (if you're lucky) have the ASD diagnosed. And then the ps will say fine but she's functioning in school and can access her education therefore no IEP/504 and we don't care. Cuz that's how it rolls.

So getting some data that actually shows the deficits would help, and the SLP testing, if you found the right person, could do that. You may have to DRIVE for that SLP. That's not run of the mill. 

Also, just file this away for you info so you ask and don't let it happen, but the CELF (a test they commonly run) *significantly* under-identifies kids with disabilities. Huge, huge issue. So if the SLP is trying to run the CELF, please see what else they have in their arsenal. Now the CELF Metalinguistics test might show something, sure. That would be interesting. But the odds of her flagging on the CELF if she's performing at grade level and mainstreaming are just really low, just saying. My ds could "pass" it and he completely bombed when we got an expressive language test that wasn't MULTIPLE CHOICE. 

So that list is very tight:

-pragmatics

-a test of writing (there are several, probably any will do)

-test of narrative language

-test of problem solving

-test of executive function

-CELF Metalinguistics

They can throw in other things, but that's what I would be looking for. That's a fair number of hours, but the results will actually be actionable and tell you something. Clearly at some point she needs a psych eval to get the ASD diagnosed. That's your call when/how. I would suggest looking for someone with experience with girl ASD. I wouldn't necessarily expect to have ONE practitioner doing ALL the testing, unless you have a $$$$$. That testing, all done by a psych, would bill at $250+ an hour in many places. I mean, price it out, see what you can find. I've heard of a clinical psych who does more testing and bills for $180. But around here the SLP doing that testing would bill at $100-ish cash price. That's a huge savings. So then clinical psych who does ASD and an SLP could be an economical route for you.

[PeterPan]

But remember. If you have the EVIDENCE, you could push for all that testing through the ps. It's the stuff they SHOULD be doing and should own. They may not. Around here, the school district flat doesn't own the tests. Some of them they bought after we came in with our private testing. But if going through the ps is the plan, that's the list and what you're pushing for.