Opinons needed about "outside testing" and/or neur

The district did some tests, but failed to test all areas of deficits. My daughter was found not eligible. I paid $1800 for private developmental pediatrician to test my daughter. She diagnoised Asperger’s syndrome for my child. I went back to the district, with test and with an advocate, and they would not accept the test—they accused me of just wanting services for my kid because this doctor said so… more private language testing-pragmatics.. (ps the school tester had heard of Asperger;s—but really didn’t know anything about it and did not consider anything like that when testing. I got another iep meeting 3 months later with assistance superintendent of district—they wanted to offer me a 504 plan. The super cancelled that idea and the team found her eligible. Three months later, final iep meeting where document was finished—never really got services that year.
I have continued with the developmental pediatrician—she monitors my daughter every 6 months. I learned everything from the private testing and it was well worth the money. My daughter is very unusual and the district still isn’t serving her properly—only one staff member I have met really understands her disability, but this fall we have started with a new inclusion teacher—who is wonderful!! My daughter is in honors classes 95% of the time and receives speech—I’m still waiting for an iep to write goals and behavior plan.

I am also glad I have those tests and support when I file compliance and due process complaints. I am about to start round two of that.

In our case, the school kept telling me nothing was wrong - she was just “developmentally delayed”. I decided not to go through the red tape and got my daughter evaluated privately to begin with. They accepted the evaluation with no problem and provided services beginning about 2 wks later even though she was making above average grades before the evaluation.

I am sure they evaluation would not have been as thorough (I saw a friends who had it done through the school and they did not even check letter/word identification (my daughter’s biggest weakness) and guess what, her daughter didn’t qualify for services.

I’m a strong proponent of outside evaluation if you can afford it.

Laura wrote:
>
> I’m seeking opinions and experiences here….for those of you
> who were not quite satisfied with school testing, and decided
> to get your child tested privately did you learn more through
> additional testing? Did results differ? Do you feel that
> outside testing is valuable?

Our older son was cored in Kindergarten by the school. A lot of the clues to his NLD were right there in the school eval, but we, as parents didn’t know how to read those clues, and the school people didn’t pick it up. He was put on an IEP for K-2nd grade, at which point they said he was doing fine and pulled his IEP. (of course I know now that I could ahve refused, but I didn’t know that then) During a horrible 3rd grade year, we asked for the school to test him again, and they told us he didn’t need it. (again, I didn’t realize that if I asked in writing, they had to do it)

Finally, I hired an advocate, who suggested a private neuropsych eval. We got a much more thorough report than we had from the school, and a clearer, more thorough interpretation of the results. The results were that he clearly had NLD.

With the report in hand, and both the advocate and the neuropsychologist with us, we went back to school, and they reinstated his IEP at the beginning of 4th grade. I won’t say it’s been a cake walk since then, but because _we_ have a clear understanding of what the issues are, rather than “just” a gut feeling that something isn’t right, we have been much more able to advocate for his needs. We have been able to make sure he has the help and support he needs to do well in school without intolerable stress levels.No

Now my younger one “hit the wall” in 3rd grade. We decided not to even mess around with a school eval, and went straight back to our neuropsychologist. We now have the answers we need for him, and have a team meeting set up for the end of the month.

> Also, if you had neuropsych testing was it worth it?

Absolutely. I was the best money we ever spent. To put it in perspective, we spent $5,000 on orthodontist work on my son’s mouth. $1,600 spent on his brain seems like a bargain.

> Did private testing help your child become eligible for
> services they would not otherwise have received?

Yes, I’m certain of it. The school fought hard to keep from reinstating my older son’s IEP. They told me last year, before we decided to go straight to the private testing that my younger son didn’t need testing either. Of course, I can’t tell you for sure that we will get an IEP for him, as the meeting hasn’t happened yet, but the neuropsychologist feels that he needs services, and the advocate agrees that the report presents a strong case supporting that conclusion.

Karen

Talk to other parents in your district to see how amenable the school is to outside testing; the district is not obligated to use the results at all, UNLESS they themselves referred the student for a eval. Also, make sure the school will actually do something constructive with the results, and that the services you seek actually exist in your school system. Schools will wear you down as you fight for what you see as appropriate services, and I don’t believe it’s possible to change the system. Also, if the outside eval.person is making a diagnosis, try to talk to them BEFORE they write the report to make sure the diagnosis is one on the federal list of disabilities(ie not NVLD.CAPD, etc)so that your child will qualify for spec. ed. if that’s what you’re seeking. Have someone else give you an opinion on whether to share private testing with the school(esp. in cases of mental health diagnoses, and when documenting a high IQ).

In our case, my sons both have issues that would qualify them for at least a 504 and probably an IEP on a number of different fronts, with or without the NLD label. We would have used one of those if the school had not been receptive to NLD. Fortunately, our school system is enlightened enough to realize that not servicing these kids is a big mistake. The older NLD kids I know in our school system, who were not ID’d younger just because the disorder was less well known, have severe emotional problems and have ended up in outside placements at much more cost to the school system than servicing them correctly would have cost.

As far as some school systems not accepting an outside neuropsych eval, I don’t think that’s a good reason not to have one done. I’d STILL want to have a better handle on my children’s cognitive strengths and weaknesses, whether the school wanted to hear it or not. These seem to be two separate problems. Keeping yourself in the dark just because the school system hasn’t come out of the dark ages isn’t going to help your child.

I’m glad we live in a school system that does a pretty good job as long as you know how to navigate the system, but I was fully prepared to take my son out and home school him if they hadn’t been willing to put him back on an appropriate IEP. And I still would have needed the information we got from the neuropsychologist to develop an appropriate education plan for him at home.

Karen

Thanks for sharing this information. It’s a shame to read about parents having to work so hard just to get their children educated. Good luck with getting your daughter the help she needs.

It’s nice to hear that the school accepted the results and is providing services to help your daughter. That’s encouraging!

Wow, your neuropsych evaluation was very inexpensive! If we decide to do one the cost will be much more expensive and unfortunately we will have to wait over 6 months for the next appointment. In the meantime I was going to get some outside testing from an educational specialist (psych).

How long did the neuropsych evaluation take?

What we paid is right in the ball-park for neuropsych evals in our area. A few people charge more, but include meeting with the school personnel to discuss the results. Our person charges separately for that. Our neuropsychologist is in private practice, and that may help her keep her costs down somewhat. The people I know who have paid substantially more have had their testing done through a “learning clinic” with a multidisciplinary team on staff. This can obviously be a real benefit if you’ve got a really complicated kid who needs to be evaluated for behavioral issues or other suspected problems outside the area of expertise f the neuropsychologist.

With our older son, the neuropsychologist referred us for OT, AT and speech fluency evals, all of which had to be done elsewhere. The bad part was that these had to be set up separately. The good part was that we were able to choose exactly who we wanted to do those evals too.

A 6 month wait is pretty standard for an eval with a good person around here too. You can cut the wait down to about 3-4 months by going with a university hospital testing site. The problem there is that you have no guarantee exactly who will evaluate your child, and the quality of the reports I’ve seen has been quite variable. Our neuropsychologist has a closed practice at this time, and is not taking on new clients. She did my younger son only because she had already worked with the family. We “only” waited 5 months this time, but that was because we were flexible, and willing to step into a cancellation spot during the summer.

As far as how long the actual testing takes, it’s somewhat kid-dependent. Our neuropsychologist plans two mornings for testing, (from about 8:30-12:00) a few days apart. My older son’s processing speed is so slow that she needed to extend that time quite a bit to finish with him. At the end of the first day, after going until 1:00, she thought she’d have to go to a third day. But we came in a little early the second day, and by noon she was close enough that we let him make the decision whether to keep going, or come back another day. He decided to keep going, and they were able to finish in a LONG second day.

My younger son’s testing went a little over, time-wise, because she wanted to do a little more testing in some areas. But we were still out of there by 1:00 each day. She lets the kids take breaks as needed, and has people bring snacks for their kids.

Karen