Gifted Issues Discussion homepage Forums Twice Exceptional Regrets or doubts on getting assessment/eval/dx?

How do you decide to even get an evaluation if you have a gifted kid who is quirky? Is it when the quirkiness just is weird, when other people notice, or when it is significantly interfering with life?

Or anyone get a diagnosis they disagree with? Doubt? Wish you hadn't bc it changed your perspective of your child?

Dd11 was dx with sensory processing disorder and dyspraxia when she was 7.5. I definitely disagree with the dyspraxia dx but it doesn't seem to have harmed dd in that no one else took it too seriously either. The odd thing to me was that the OT made the dyspraxia dx based upon scores that ranged from an age equivalent of 7 to 16 y/o on different measures. Since she wasn't below the expected output for her age in any area, I'm not sure where that dx came from honestly.

Cricket,

Just a guess here but in our district a dx of sensory processing disorder gets you nothing but a dx of dyspraxia entitles the student to services. Some therapists here will through in the dyspraxia to make sure the child receives services.

With PG and HG children it's easy to collect diagnosis that not only the parents disagree with, but professionals who are more used to HG and PG kids disagree with.

I regret spending my money on a 'local' psychologist, who, although very nice and caring, had no idea how to help us come to terms with the impact of being PG on my son's school life. He also diagnosed NVLD, which we were later told was 'just plain wrong' based on the wide intratest scatter. It was explained to us later that the higher the highs, the more scatter is possible.

I don't regret having the testing done, because it gave us the Davidson qualifing scores, which opened up a whole new world for my family.

I think it is good to clarify going in what the questions YOU want answered before you start, and I think that if you guestimate your child is Ruf level 3 or more, that it's best to get the testing done by someone who 'really, really' 'gets' HG and PG kids.

Love and More Love,
Grinity

We did it "backwards" with our DS. He was diagnosed with an autism spectrum disorder when he was 2 1/2 and not formally diagnosed as gifted until age 6 1/2. The ASD has helped us easily get him accommodations for the classroom, yet it has hindered his ability to get as much accleration and enrichment as he needs. His current school sees the disability first and the ability second. I am hoping (against hope???) that his new school for the gifted for next year will accommodate for his ability first!! I'm happy he had the years of therapy he needed due to the initial diagnosis...because now to outsiders he can sometimes "pass" as just a quirky gifted kid! Nan

through = throw I swear the older I get the more I do this...it is scary.

Thanks for responses so far!

Grinity, I get what you are saying about the Ruf level being indicative of how accurate the eval/assessment would be. Okay, so If I think he is 3-4 in most areas like reading, math, colors, academic concepts but not advanced at all in areas like verbal expression and walked a little late (16 mo) does that either not make him gifted but savant like in a way? splinter skills or something? I'm SO confused like he is in the middle all the time, swaying me back and forth. But SO advanced in areas like math, reading, spelling, writing, languages.

The latest concern is a possible facial tic?? Stim?? Experimenting with faces? Knows he's doing it but definitely weird looking and he says he can't help it. On and off for a few days (an open mouth kind of grimace or something). Ugh. Stress.

kcab -- good ideas and things to think about! love your advice about getting someone really knowledgeable in HG/PG kids. Is there a list somewhere?

Dd11 didn't walk until 15.5 months although she was speaking in sentences by then. She also didn't learn to ride a bike until 10 -- after she started 6th grade. She's probably a level 4 on Dr. Ruf's charts although I don't know how much stock I put in those levels. I would say that she is HG, though & her achievement scores definitely back that up. Her one IQ test, done at 7, had such wildly divergent scores that I don't know how much I'm counting on the accuracy of the total score, which put her at MG. I absolutely wouldn't say that your ds isn't gifted b/c he has wildly divergent strengths & weaknesses. That is very, very typical in gifted kids.

check Hoagies for a list...

or search the archives

or post to the regional forums

good luck!

Looking back at my childhood, what they focused on was my mother had a mental health dx of p schizophrenia, so they assumed junk like I was hearing voices instead of children picking on me and stuff like that.

I did get an ADHD diagnosis and tons of therapy and school interventions and everything under the sun because of that. But I'm a confusing person with an unclear label even today. About the only good thing a label is for is to get services... because tell someone you are bipolar for example and if they know lots about bipolar they will be thinking of all sorts of stereotypes about you.

Angix, that's what I was afraid of. Getting a label and nothing good coming out of it. His behavior isn't totally out of line especially at school so I always debate...

If he fits Ruf Level 3 to 4 even 50% then yes - travel for your assesment.
These kids are confusing, and that alone is a reason to 'get with' a professional. There aren't just there to spit out and answer such as:


"Need radical acceleration"
or
"must homeschool"
or
"is 2E with the following exceptionalities________"

although that might help you with the school questions...

they are there so that when the X hits the fan for you, you can get some reasonable guidance from someone who 'gets' your kid -

And if they can help you understand your child better, well now we are talking about something truely useful. (provided that they are correct - truly dangerous if they are incorrect, sad to say, but usually even the incorrect ones help move things forward provisionally.)

Here's a try for a link:
http://maps.google.com/maps/ms?ie=UTF8&a...f403bed&z=4

Best Wishes,
Grinity

Grinity,

Would you travel (a long distance) for an evaluation by one of the experts based on the Ruf Levels 3/4 if school IQ testing/screening does not show HG/PG numbers? My GD 5 yrs, 10 mos is going to be evaluated at school (they suspect Asperger's - we're skeptical) and as part of the evaluation will be giving her an IQ test. They would not say what test so I'm not sure if it will even be a "true IQ test" or just a "screener". If because of her age (just under 6) or her lack of cooperation due to being at school (bad experiences), or a possible 2E issue affecting the areas requiring concentration, she were to score as "only MG", would it be worth it to spend the $$ to get an opinion from an expert based on meeting almost all of Level 3 and some of Level 4? Sorry to butt in on the original post, but your answer made me wonder how to look at this. Of course, I'm just speculating about the results at this point.

My DS8 and I have just gone through this. He has been diagnosed with Tourette's Syndrome, which is more than just the outward tics, it has components of OCD and ADD. We are not medicating but are writing an IEP next week to accomadate his classroom needs. I will say that having this dx has made the teachers lighten up and give him some room. It also lets me know that he isn't just trying to drive me nuts. Before the dx it was suggested as aspergers, add, ocd, opp/def and everyother group of letters. We were fortunate to see Dr. Amend in Kentucky to review our records and he agreed with all this. I would have never thought of Tourette's due to my own preconcieved ideas but looking back it is now obvious, there I just put one more possibility in your basket sorry

It's my belief that it is even more important to travel in exactly this situation. It's so easy for the less experienced testers to say - 'Congratulations, you have an optimally gifted child' and break out the champagne, while you are stuck still wondering about overlooked 2E issues and PG issues.

That's what my life experience tells me.
Love and More Love,
Grinity

Grinity,

Thanks for the advise - my daughter is already considering getting a second opinion depending on the outcome of the school evaluation. If it seems warranted, I will try to convince her to at least do a phone interview with one of the best and if she likes what she hears, travel this summer for an evaluation. We desperately need to get the "real scoop" on GD and I don't know if there is anyone in Houston we can trust to be familiar enough with kids like GD.

vicam - I'm glad you got your son an accurate diagnosis and are seeing a change in attitude with the teachers at least. I guess I should look up Tourette's now - thanks I think. Seriously I appreciate the input and will do more research. I've been doing a lot of reading lately.

Any and all info on Tourettes needed - experiences and first observations? DS has been doing what we think are tics for a week now:
blinking a lot
mouth stretching
sniffing (but hard to tell if allergies bc allergies year round for him w/runny nose)

Stress!

Motor tics are very common in young boys especially. Usually they are benign and just go away without any intervention. You could see a pediatric neurologist to reassure yourself or ask your pediatrician, but the vast majority of these are transient and require no treatment.

Tics that persist over time, are multiple and include vocal tics, and/or interfere with the function of the kid, may warrant an neurologic exam to make sure they are not Tourette's or any other more complicated neurologic issue.

IIRC, it's been a while since a read about this, but I think about 8 is a very common time for tics. You can just google "transient motor tics" and find a lot more resources.

My DS went through a period of about a month with tics and rapid eye blinking. I talked to his pediatrician and she said give it a little time. It went away within about 3-4 weeks. Apparently it is something a lot of little boys do, no idea why.

Tics must persist for a minimum of a year and include physcial and vocal tics of some sort. IDing involves more of a process of elimination. I went to the tourette syndrome assocation site TSA. Yes most kids tic at some point especially boys. It is the duration of events that matter

GM5 -
Huston is a major metropolitan area - by the numbers there should be someone who would have enough experience. Post over on the regions part of the forum and let's see if anyone has any reccomendations, ok?

Grinity

Grinity - I'll try posting in regions - thanks. You would think there would be someone in a big city like Houston but finding that person is harder than it should be.

My DS 7 was dx with TS in Sept of last year. He has had vocal and motor tics since we can remember. He makes an eeee noise and grimaces, he shrugs his shoulders and clears his throat, he jumps and flaps when he gets excited, and he spins and spins and spins. Looks a lot like ADHD behaviors but they are all common TS tics. He does have ADHD and OCD and is highly gifted. The TSA website is a great source of information. I'm here if you have any questions.
Becky

Good Luck!

The thing with any assessment-- gifted, Asperger's, dyspraxia, crooked feet-- is that it's just a tool. Optimally, it's a tool to get little Isabella what she needs, and not a tool with which to beat her to death (though it could be either, IME). It doesn't define the kid it's affixed to, it doesn't even particularly explain much, because our kids are so much more than just a diagnosis or a test score (or even the sum of all the parts).
Right now, both the diagnosis and the gifted label are kind of on hold because we homeschool. My dd's being taught in a setting tailored to her, just like her neurotypical twin. She's not receiving services (for a lot of reasons, many better left unenumerated) and is just one of the pack ("the one who draws really cool cartoons") at our co-op. The only thing the labels are used for at this point are email lists. She'd be just as bright and just as goofy even if we'd never pursued the labels, so they're of limited value, IMO, though that may be subject to change in the future.

I didn't realize until yesterday how my son really felt about all of the recent doctor visits and assessments until yesterday at the base clinic where we went hoping to get treatment for what we think might be migraine headaches. After three heart rate and blood pressure readings were high, even though they kept telling him to relax, the military doctor finally asked him why he was so nervous. I could easily see why he might be nervous. The doctor looked intimidating even to me in her military uniform. She made no attempt to make my son feel at ease. She didn't take the time to tell him what she was going to do before she did it and when my son nervously asked what she was going to do next a few times, she seemed irritated with him and said she was the doctor and he needed to be quiet and do what she told him to do. He wasn't refusing to do anything, he just wanted to know. I am the same way and I have always told him he has the right to ask questions and he has the right to know what the doctor is going to do to his body.

He told her the reason he was nervous was that it seemed like every time he went to the doctor they wanted to diagnose him with something else. He said he didn't mind going to the dentist (she takes time to talk to him and put him at ease before she does anything) but he also said he thinks he might have a problem with anesthesia working on him as well as it does other people because when the dentist started working on his teeth the last time it still hurt a little. He joked that maybe the dentist had given him a placebo and then he said it ended up being a.... When he couldn't think of the word, he asked me what the opposite of placebo was and when I couldn't think of it, the doctor said there wasn't one and seemed irritated that he even brought it up. Of course we looked it up at home and the word he was thinking of was "nocebo" but the doctor didn't know what he was talking about so that felt awkward and it just added to the unpleasantness of the visit.

We now have to go to a neurologist to diagnose the headache problem and the doctor thinks he should see a psychologist or psychiatrist about the doctor anxiety. So he has to see another doctor because he has anxiety about seeing doctors.

I asked if she thought the anxiety might be understandable considering the last time he saw her she told him he had scoliosis and he ended up having to wear a painful brace that he will have to wear until he is at least 16 years old and then the orthopedic surgeon who has even less bedside manner than she does described the operation requiring steel rods inserted in his back if the bracing didn't work. She couldn't say, our time was up.

Just as an aside, I've worked as a nurse therapist for ages-- in hopsitals altogether since the mid-seventies-- and I don't recall hearing the word "nocebo" used either.

That having been said, I'll second Cricket. If there's any remotely decent alternative to Dr. Personality, I'd check it out. Your son shouldn't have to deal with that, and neither should you.

Thanks everyone for your input on this subject! If anyone else comes across this post, I'd love to hear more stories about how:
1. You were on the fence about gettng a dx and very glad you did
2. You were on the fence about getting a dx and wish you hadn't
3. You are on the fence and choose not to get evaluated bc quirkiness isn't affecting much.
4. You feel your kid got a wrong dx.

Thanks!

1.

Actually we weren't going to get one, since she didn't have any issues at all.

The teacher encouraged us to get one so we can understand our child better. So eventually we did. And we were totally shocked by the results. We really couldn't have guessed how well DC did. We just kept thinking DC was bright, that's all. Heheh...

1.
My husband resisted having DS12 tested at all, because he was afraid of the stigma that goes along with LDs and didn't want Son to have that "hanging over his head" forever.

Luckily, this problem was resolved when DS tested into the GT middle school program, because it suddenly didn't matter to Hubby if his GIFTED son had LDs (insert my eyeroll here).

Hubby and I still go round and round with each other and with the school about accommodations and Son's needs (Hubby doesn't think Son's work should be "reduced" because he's of the "he needs to do the same work as everyone else or he'll never learn any character or work ethic" school of thought), but I am so grateful that Son's needs have been identified, because now I can HELP him. I know what the problems are and I can research them and put a plan in place to keep him on track and keep all of us from getting so frustrated.

I'm just glad I am the one available when the school meetings are held.

I don't know if my daughter was misdiagnosed or not. I have days when I think she absolutely was, and other days are "oh, heck yeah she's on the spectrum!" Probably that means she really belongs there, and has developed significant coping skills. (Not to that mention asynchronous development isn't as glaring at 12 as it is at 3 or 4.) But again, the label isn't in use so much since we're not in a formal school setting.