Gifted Issues Discussion homepage Forums Twice Exceptional Recs - Assessment of LD and a really long post

Hi all,
Long time lurker, new poster. :Waves:

I'm wondering if anyone has any recommendations for a neuropsych or other learning disability assessor in Illinois or, alternatively, in Colorado?


Danger ahead - welcome to the longest post, ever.
Here's our really, really, super long story with lots of over-sharing for those interested. I'm writing this down, partly for my own vent, and also hoping someone will see their kid in some of this and share some helpful advice:

Background:
My daughter, 6, is one of those kids who just read as gifted from a very early age. She never shuts down, taught herself to read at 2 (decoding - but didn't make the jump into true comprehension until this year), crazy inferences, simple math at 2 etc. She is highly verbal, full of energy and ideas, creative, loving, affectionate, and just really, really SPARKLY.

However, she has also always been EXTREMELY difficult. She cried 10 hours a day for the first year of her life, she wants everything her way in an atypical way, she really struggles with executive function, impulse control and emotions. I remember getting her out of her crib at 15 months after an attempted "nap" time (naps really stopped at a year) and she said to me, "You the worsest mommy ever. I want a new one."

We've struggled in school and activities (even gifted schools) when the teacher changes the schedule, when my daughter is overwhelmed, in transitions, etc. She has yelled at teachers, pushed other kids, hidden under tables and refused to come out, etc. She doesn't understand physical boundaries.

At home, we never know if it is going to be a good day or a bad day. We often walk on eggshells to keep the peace. We have a son who is 2 who reads, so far, as very typical (both in terms of gifted ability and temperament). It is hard on all of us and I often find myself applying such different parenting techniques that I get confused.

I have read literally hundreds of books (the most effective has been nurtured heart) to try to help my daughter. She has been assessed with Sensory Integration issues, and we attended OT several times a week, which was really helpful - I saw a huge change in her, but only while we were going. She makes very little eye contact, needs constant praise and attention, craves consistency, and talks or sings or hums to herself constantly.

She has also displayed minor tics (both vocal and motor) on and off for the past year that her pediatrician said would likely be transient.

Our Move:
We are in a bit of a difficult position because we recently moved from Colorado (where my daughter was set to attend a school that really gets gifted kids AND all the other issues that she deals with) to Illinois (where we are in public K) for a job change. My husband also went from a high-paying private job to help save-the-world at the government so we have had to make some serious financial adjustments.

Assessments:
My daughter was assessed with the WPPSI at 3.5 for admission into a private school program. I believe it was an abbreviated version due to her age (3 verbal subtests, 2 performance subtests). Her her verbal scores were 18, 18, 16 and her performance were 16 and 13. She also received a Kauffmann achievement of some sort - score 153. The tester did not see any problems with attention and did not think that the scatter of scores was remarkable.

Recently, she has been assessed at school (I'm not sure with what tests, but for achievement/placement) with some interesting results. Her reading and math results both placed her somewhere in the 2nd grade level. The testers remarked that she could answer almost any of the problems asked, but that she took a really long time - no automation. She fell out of her chair. She kept asking irrelevant questions. She, alternatively, said things were too easy or too hard so she wouldn't attempt them. They said she is clearly a bright little girl, but that, essentially, there are other kids in her class who are achieving more. Our school system seems to be all about achievement.

She was also assessed for a weekend enrichment program here, with similar results (scores - 99th percentile math, but only 92nd reading). The tester said that the brief intelligence testing performed was "really amazing" but in reference to the achievement testing, my daughter moved too quickly through material without really listening to what was being asked.

Current Status:
School has actually gone well, in terms of structure. I believe she has learned a great deal about following rules and behavioral expectations. She hasn't had any major meltdowns in kindergarten (a major improvement from all levels of preschool). She complains frequently that school is boring. She has not made many friends, but it is only K.

My daughter's academic skill level has really remained stagnant for the past year. Her writing is really a frustrating spot. She will pull out truly remarkable things sometimes (after I explained to her what they were, she listed prime numbers to about 50 in the car for me - with only a few mistakes), but she still struggles with reading relatively simple words sometimes (for example, the word was illustration, she guessed illusion, island, before finally landing on the correct word.)

We don't do a ton of enrichment at home, mostly because she doesn't want to - she would rather play pretend kitty or another imaginary game.

We just had the last day of her weekend gifted enrichment program, and the teacher spoke to every set of parents about how well their child had done and provided them with some additional material to take home. Well, she spoke to every parent but my husband and I. When my husband finally asked how things had gone, the teacher's comments were that focus was sometimes a problem, and that my daughter asked lots of questions. We were not given any of the additional information or material. This is a teacher who has been teaching gifted kids in this program for a long time, so she "gets" gifted.

Why I'm looking for a neuropsych assessment:
The more I look at my daughter's behavior, the more I feel that she is really struggling with some sort of learning disability or with a place on the Autism spectrum, or ADHD, etc. I am also not sure where she lives on the gifted spectrum, and whether that matters.

I really want her to love school, and to feel accepted both at school and at home, but often she just struggles to "fit." I don't want her to be bored, but I don't want her to get in over her head, either. We have access to really great enrichment programs here, but she hasn't seemed to completely benefit from those (see aforementioned example). I want teachers to root for my daughter, rather than to see her as a problem.

Most of the gifted kids I encounter seem to be high achievers and seem inquisitive and well-adjusted. That is not my kid. I am hoping to find someone who will help us create a place of belonging for my daughter.

As a side note:
I was assessed PG (160+ when I was 6), and was recently diagnosed with ADHD, inattentive type, as an adult. Currently on meds which make a huge difference. I was grade-advanced in school and always achieved enough to get placed in gifted programs and honors classes in college, but I was never at the top of my class. I really struggled in graduate school and in my career with procrastination, scheduling etc. I know that ADHD is extremely heritable, so that might be a factor.

Boldlyguessing,

First welcome. You are dealing with such a huge number of things, on top of a major life change with the move, that you must just be gasping for a moment of peace.

I don't have any answers, but I would encourage you to pursue a full battery of tests to try to get a handle on the IQ and also on any LD's and other issues. Don't worry about how the school views her achievement right now - esp. if you think there are LD's involved. I am def. not an expert, but I don't think most of the school assessment instruments are in depth enough to get a handle on this sort of thing.

My instinct is that although the GT program person "gets" gifted, they may not get PG or 2E, so just wait until you can get a really deep assessment. Keep supporting her as best you can. I think others will suggest places for an assessment. You will see more response after the weekend I would guess. You might need to travel to find the right person, but at least you have a couple options in terms of location.

Good luck! Cat

Hi Boldly,

Is there a children's hospital anywhere near you? That's the route that gave us the best luck with diagnostic testing.

I think you're very right to pursue it-- a lot of the frustrating behaviors you describe would be consistent with autism spectrum disorders or ADHD, and you would need a very good professional to sort this out.

Because she's a girl, and that bright, if she has autism it's likely to be missed by a tester who hasn't seen lots and lots of girls on the spectrum. Girls present in subtle but important ways; schools often think they're well behaved and just a little disorganized even if much more is going on under the surface.

Because of that, were I in your shoes I'd probably seek a diagnostic center that specializes in autism spectrum disorders to rule that in or out; such a center is likely to also have lots of experience in teasing out attention issues from spectrum issues, because they deal with the borderlines between those diagnoses all the time. They would undoubtedly include IQ and achievement testing as part of the battery of diagnostic tests, so you'd get a pretty comprehensive picture.

Best,
DeeDee

Thank you, both, for your insights. Cat, this has been a really tough move, and I appreciate the thoughts.

DeeDee, I have a feeling you are right that we do need to investigate further. Thanks for the rec to find a hospital - we are close to Chicago, so that shouldn't be a problem. Our pediatrician in CO had discouraged us from going down the diagnosis route this early because of the life-long label that comes with diagnosis.
Our daughter seems so "normal" sometimes, that it is tough to see past that. But when her tics are acting up or in the middle of major meltdowns, I second-guess our decisions.

Thanks again, for your thoughts and ideas!

xxoo
Mandi

Boldly, if you don't mind my saying so, label shmabel. Your pediatrician was off base on this.

If your DD has meltdowns (and I sympathize, we have seriously BTDT) she has probably already observed that other children do not have this much trouble controlling themselves, and that she is different. Likewise, other children and their parents and all the teachers have undoubtedly also noticed the difference and discussed it among themselves.

I would much rather my child be labeled as having a developmental disorder that is NOT his fault, than labeled "badly behaved" or "a problem" or "odd" or whatever. A diagnostic label is much kinder than those bestowed by a community that's not been given tools to understand what's going on.

Telling our DS about his Asperger's was really helpful for his understanding of himself, and seeing his differences not as bad or odd behavior, but as part of his wiring. He knows he has to work on the parts he can control, but he also knows it's how he's made, not his "fault."

Aside from this, a diagnostic label is what gets the family the services they need to help a child with unusual needs thrive, and the information they need to make smart choices. With an undiagnosed disability, you're flying blind and without help.

I'm not saying everybody should run out and get diagnosed, but I'm saying that if you have real concerns, find the most appropriate and qualified specialist and have a serious look to see what's going on.

DeeDee

Boldlyguessing,

I agree with Dee. Getting a "label" is an essential first step to getting accommodations to help in school.

My son was labeled with an ASD at age 3 and prompted us to get LOTS of early intervention services. These have helped so that I knew how to explain the meltdowns, hiding under the table, etc to the teachers and to myself. He's not a bad kid, he has autism and because I know that (and my son knows that), we have strategies to cope with meltdown prevention, among other things.

And yes, now he is labeled PG, too, so I can definitely understand how confusing THAT combination can be with your daughter!

Your first priority should be getting an evaluation. You will be happy to have an answer, and the answer will help get the right accommodations if necessary, and your daughter will thrive!! Really Nan

Welcome - to the board and to the Chicago area. I'm a mostly lurker in the western suburbs.
First of all, if you think that something is "off" with your dd, believe yourself... there is. I have found over and over again that parents are really, truly, the best at diagnosing almost everything.
We have four kids, youngest is 8, oldest is 20. Dd20 is the one who kind of sounds like your dd. All are gifted, but she is the only one officially dx'd as PG. We had a full spectrum of tests done by an educational psychiatrist, but unfortunately, we waited until she was in middle school. We did it in response to a lot of anxiety issues. It was a long road - filled with outbursts, sadness, intensity, etc etc... the school RARELY saw the problem until high school, because she was a typical girl there: quiet, well-behaved, etc... They also didn't think she was all that brilliant when we first moved here - they didn't accept out-of-state testing, and I think they worried that her very young age (she started early and skipped) meant that she had kind of "tapped out." It took us a year for them to grasp she was really gifted. OTOH, her educational psychiatrist was so wowed by her IQ that he really dismissed any other psychiatric concerns.
I don't have a name, but I would also recommend calling one of the teaching hospitals and asking for a neuropsych rec. We get care for another dd (but rheumatology, so that wouldn't help) at Children's in Lincoln Park and we LOVE it - they are by far the best doctors we've seen.
If you got the CTD short eval, we had that done for my youngest in K. It was nice to get some validation but honestly, it didn't tell us anything new. Our dd's full evaluation was about 10 pages, both sides, small print, of extensive information. Although I don't think they really captured everything in terms of her psychological issues, it was still extremely helpful. It cost us, but it was worth it.
I think for 2E kids, there is no straight and easy path. Our dd has had ups and downs, teachers who get her and teachers who are clueless. And she's like your dd in that she likes being challenged, hates stupid or pointless stuff, but used to also meltdown when she thought something was too hard (she liked to be the top at everything, without effort... that obviously can't always happen).
For the record, our dd was diagnosed as a teen with bipolar II, generalized anxiety, and executive functioning deficits. Now, though, she is off all meds and doing pretty well - a senior in college majoring in science and on full academic scholarship (with a LOT of help, and a college very close to our house).
For our part, we've stopped trying to diagnose her. That might seem weird given that I've just said "get the diagnosis" but what I mean is continue to get as much information as you can. Continue to try and figure out what makes her tick. Work with teachers. Be open, don't worry about labels!! I had to get past that. Everyone is somewhere on the spectrum, right? She's just a little more off-center than some, and needs a little more support. She'll never be our easy one, but she's managed to find a good fit. So can your dd.
HAHA - now have I made you feel better about YOUR long post?
Anyway, good luck, I'll stop rambling, but you can feel free to email me if you want to chat more.
Theresa

Just wanted to post a thank you to all of you for your kind and thoughtful replies.

I have taken a few days and a step back. Our next progress is a conference with my daughter's K teacher. Then we will seek out an evaluation.

I believe that my husband's brother is on the spectrum (and 2E), but has never had a formal diagnosis, so I should have considered Asperger's as a real possibility. My hesitancy comes from reading the DSM criteria - my daughter doesn't fit those, but I know that girls can display differently.

Your experiences and devotion to your children are deeply respected and honored. Good job, parents

Theresa, thank you for your personal experiences. I am deeply afraid that my kids will suffer from depression and/or anxiety (runs in our families). How lucky your daughter is to have a family that supports her and continues to stand by her side and fight for her. We are in the W Suburbs, too!

xxoo
Mandi

Hello,

I am conscious that words on a screen can have a harsher affect and I really don't intend this to come across as cold

To me, what you describe is almost exactly like my exceptionally gifted Aspie son, and many g-Aspie kids we know.

I would strongly suggest getting an assessment for Aspergers/ASD through word of mouth recommendations and even get a second opinion if you can.

I must admit I get really annoyed when medical professionals do the "don't get a label" thing as it is negligent IMHO. A diagnosis gives you a starting point. I firmly believe "child first, diagnosis second" and far too many professionals in ASD for instance will treat a child based on their label. This bothers me big time as my Aspie son is unlike any other Aspie child I have ever met, just as those children are individuals too.

If you are having behavioural problems with your daughter, I strongly suggest Social Thinking (www.socialthinking.com) as this has been fantastic for our son. Check out that website and see when there are presentations in your area.

I think parents new to Aspergers/ASD often go with the first bit of advice they're given by a special ed/ASD/medical person. In our experience, nothing that was suggested to us impressed us, as we knew instinctively what would and wouldn't work for our son.

Two years later, we are taking a very outside the box approach to our Aspie kids, one which has professionals firmly entrenched inside the square shaking their heads at us, pffft... but the very, very small number of 2E people and other parents are the ones who praise what we're doing because they've walked this path too. The difference is that the people who praise us truly see each child as an individual and do not compare them to others. Far too many professionals think "oh he's an Aspie therefore he is like this, this and this".

Girls are often harder to diagnose but my daughter got her Aspergers diagnosis at age 2y10m. Because:
- family history (my husband's family are all Aspies);
- observations of her behaviour during the session with our ASD paediatrician, who is very well versed in ASD and early signs Aspergers vs HFA;
- listening to our descriptions of our daughter's behaviour in different environments and how she responds;

We were really, really lucky to find such a supportive paediatrician who happily gave us the diagnosis so we could secure early intervention funding. We knew our daughter was Aspie from a very young age, based on her brother.

If you believe there's a family link then yes, you will realise it more in your child


Also it is worth noting that there is a high incidence of depression and anxiety with Aspies. Every female Aspie I know has one or the other or both... however this doesn't really alarm me because I now know how to build defences in my children. In our case we are homeschooling which will certainly remove any school infliced damage (and my kids are the ones who stand out big time and are targets ). But love, guidance and builing positive skills now will help

About the academic side of things, my husband is also 2E and brilliant with maths, computers and science. With things like English lit or learning languages or anything arts related, he struggles and simply doesn't get it. This has not stopped him being very successful in his field and he has many friends and has done so well.

non-ASD gifted kids tend to do well across the board, but gifted-ASD/Asperger kids tend to do well in a particular area more so than others. With my son, teachers would say he is bright but they would not realise how gifted he is, due to how he would behave or be uncooperative with schoolwork. Same with my husband, he was by far the smartest kid at school but all his high school reports say how he doesn't apply himself, doesn't work hard, etc. In reality he was bored; very visual so written things were hard; etc.

Mandi, I dismissed the possibility of AS in my DD17 for the same reason until after I read the book "Aspergirls" by Rudy Simone, it was a real eye-opener and I highly recommend it.