I’ve been avoiding writing in my blog about the neuropsych feedback session earlier this week.  It was a bit unsettling, but mostly confusing.  The good news is that the testing did not show ADHD or Asperger’s.  C did great on all the tests and I’m sure I’ll elaborate more in the future after things have had some time to sink in and maybe I have the actual report to refer to.  The neuropsych thought that C’s issues stemmed from asynchrony and that he should repeat first grade so his behaviors don’t stand out so much and he can be with peers closer to his social/emotional level.  That being said, he also did not think C should repeat all the academic work from first grade, which had already been unchallenging to him last year.  This may make make you think about subject acceleration, but he didn’t want C removed from his age peers for a lot of pull out.  What he was describing seemed like a gifted school, and nothing like what our school district is willing to provide.

I wrote more about the confusing nature of the feedback session on the Davidson Gifted Forum.

I wanted to post tonight, though, because tomorrow my husband and I will have an intake interview with the neuropsychologist, prior to C’s testing next week.  We are both hoping that this doctor will have some answers for us so that we can help C.  I am not too optimistic about this upcoming school year if things remain as they are.  Later next week C also sees the neurologist.  I’m glad to get getting these appointments done prior to the start of school, even though we likely won’t have any results until after school starts.

C is busy enjoying camp this week.  That, at least, seems to be going well!

Check out this interesting study about ADHD misdiagnosis, courtesy of Raising a Sensory Smart Child.

This summer Z had the opportunity to go to camp for two weeks with other children his age.  It was held at a local daycare that my nieces attend.  I asked that the teacher fill out an EI questionnaire towards the end of his time there.  The questionnaire is quite simplistic, just asking “yes” or “no” to whether they have any concerns in different areas, such as communication.  I was a bit surprised that they checked off “yes” to having concerns in 4 out of the 5 areas of communication.  They only communication area that they didn’t have a concern about was following directions, which was the one receptive area.  The other 4 were all expressive, which is where he has his delay.  His teacher didn’t go on to elaborate about what her specific concerns were, however.  I’m glad I didn’t pass on having Z reevaluated and will be interested to see how he does next month both at his new preschool and at the EI evaluation.  Perhaps he will continue with services after all.  He does still have some unusual substitutions for some of his sounds (he used an “l” for a “d” the other day) and doesn’t speak as fluidly as one may expect.  Still, he has a large vocabulary and can say complex sentences.  Last night when we were going upstairs to get his brother, he said “C not reading, he waiting for us.”  Ok, I guess that’s really two sentences, but I still think it’s great.  He’s got pronouns, negatives, “ing” words, everything in the right order, etc.  All he’s missing is “is”.

Last October I took Z to an ENT an the advice of his speech pathologist and followed up with a pediatric audiologist.  Everything checked out OK, except that he may have enlarged adenoids.  I think that is fairly common for children and that they shrink as they get older.  The ENT recommended an x-ray, but I was not thrilled with the prospect of getting my 2 year old an x-ray and possible surgery if it wasn’t totally necessary.  I put off getting the x-ray, but was reminded about it again this summer when I took Z to C’s allergist to make sure that Z doesn’t have food allergies prior to starting preschool.  I didn’t want to take a chance with Z since we found out about C’s allergies when his daycare fed him peanut butter against our wishes.  The good news is that Z seems to be allergy-free.  The bad news is that they also wanted him to get his adenoids x-rayed, so I bit the bullet and got that done last month.  At that point we just know that the x-ray did show his adenoids are enlarged and we have to follow up with an ENT again.  This time I’m taking him to an ENT at CHOP, because if he does need surgery then I want it done there.

I couldn’t find any information online that suggested we could attribute any of Z’s speech problems with enlarged adenoids, though.  I’m uncertain how this fits into the picture and whether they are really necessary to remove merely due to the fact that they are enlarged.  His only symptoms seem to be some mouth breathing and loud breathing at night.  I guess I will find out more in October when Z has his appointment.

While this was excellent news, it did leave me with a bit of a dilemma. Should we go with the neuropsychologist or see if the district would agree to pay for the educational consultant that was highly recommended to me? While I had assumed the consultant was a psychologist, a closer look at her CV showed that her background is actually in special education. I think this has its pros and cons, so it didn’t affect my decision much. However, it seemed it would be best to stick with the neuropsychologist for a couple reasons. First, he’s local. The other woman is in our area only in the summers, and even then is still a two hour drive away. Second, I know the district will definitely agree to the neuropsych (he was on their list after all), whereas it may be a battle to have the other woman approved. I’m really tiring of battles. Hopefully I made the right decision!

C is scheduled for the neuropsychological evaluation at the end of August, with a school observation to follow in September (another thing the educational consultant wouldn’t have been able to do), and hopefully a report to us and the district a couple weeks following that. This is about the same time C sees the neurologist, so while I’m happy to be getting these things done before school starts, it may be a tough and confusing time for C. We don’t want him worrying that there is anything wrong with him and I’m sure taking him to doctor after doctor can’t help in that regard. However, I don’t think ignoring the issue and not seeking a diagnosis is appropriate either.  It’s really hard to know what’s best.

I forgot to mention in my last post that the developmental pediatrician declined to write a letter of medical necessity for CHOP. Her reasoning? She said that she didn’t feel the testing would be valid for a child prior to third grade. She felt that neuropsychological testing in particular was useless to diagnose learning disabilities before this age/grade. I tried to explain to her that if a child is discovered to be dyslexic in third grade, then that child was most certainly dyslexic in first and second grade also. Everything I know about LDs says that the earlier these issues are found and addressed, the better the prognosis. Brain plasticity is the highest in younger children, after all. By third grade patterns are set and it becomes increasingly difficult to reverse underachievement.  I felt the developmental pediatrician was totally off base in her response, but it’s hard to argue with a double-board certified MD. I think, though, her information about special education is a bit outdated.

I did meet with C’s pediatrician finally last week.  She confirmed we should go ahead with both the neurological and neuropsychological evaluations.  She felt we were on the right path, and so I hope that’s a good sign.

For ADHD she gave us a new scale and said to have his second grade teacher fill one out a couple months into the new school year.  Again, basing the diagnosis on the biased results of a single teacher and his parents.  We already know that our scale will show ADHD, as it did before when we did one for the school district.  So the deciding factor of whether or not he “has” ADHD will be his new teacher, whoever he or she may be.  Oh my!

We were referred once again to a neurologist and I had to explain our difficulty in getting an appointment.  The developmental pediatrician told us that we can’t mention the behavioral issues off the bat.  Instead we have to stick with what to us seems inconsequential, C’s large head and minor physical delays.  Well that worked and we now have an appointment.  It looks like he’ll likely get an MRI and I’m guessing if that’s normal then we’re back to square one.  The report from the developmental pediatrician mentioned something she didn’t bring up at the actual visit, that they may want to test C for fragile x syndrome.  In my brief research online, it looks like this is often associated with mental retardation to varying extents.  I have been unable to find any sources that mention it in reference to a gifted child.  At least it’s an easy enough thing to check, a simple blood test.  However, it would be a horrible diagnosis to receive.

I managed to keep it together and explained that the whole reason we’re seeking an appointment in the first place is to get a diagnosis and that neither C’s pediatrician nor psychologist felt competent to give one.    His pediatrician referred to a developmental pediatrician (as she should have) and his psychologist referred us to a neurologist.  The neurologist at CHOP still has yet to return my call or respond to the handwritten request from the psychologist.  The conversation with CHOP today was for a neuropsychologist, who doesn’t usually accept our insurance.  This whole thing is just plain crazy.  So I suppose that after an hour tomorrow with a developmental pediatrician that C will likely get slapped with a label of some sort and I’m wondering if I should even fight it, because it seems his only path to a real diagnosis (and therefore any help) is to have an arbitrary one to get him in the door somewhere.

Due to the headaches of trying to get a decent evaluation, I decided to approach our school district about paying for an independent educational evaluation.  Apparently they don’t have to respond over the summer, however.  So we will likely be dealing with this in the fall.  I realized a bit late how inadequate their special education evaluation really was. Where they would normally assess a student for specific learning disabilities and the like, they just plopped in the results from his scattered gifted testing.  Meanwhile more detailed testing is necessary to diagnose an LD.  Their whole evaluation seemed to be hinged on a few rating scales, which in the end were contradictory and therefore useless.  If I do manage to get them to pay for an independent evaluation, I found an excellent psychologist who has a lot of experience with twice exceptional children.  The problem is that she’s only in our area for the summer.  Nothing is ever easy…

One resource I would like to share is the NAGC’s ABCs of Gifted (scroll down for articles).  They even have articles on Gifted and ADD/ADHD and Gifted and Autism or Asperger Syndrome.  Another thing to note is that NAGC membership is quite affordable for graduate students.  With it you get a couple of NAGC’s quarterly publications and discounts on their webinars.