Just diagnosis'd; need advice on first steps

Rannveig

Member
I am returning to this site after many years during which I just dealt with my kids' problems a day at a time, but after finally getting a neuropsychologist exam for my middle child I think I need a grand strategy, so I'm back.

We don't have the written report yet, but the oral feedback this morning gave us a diagnosis of ADHD-not otherwise specified and Major Depressive Disorder, with the caveat that the "H" in "ADHD" isn't actually there at all in him, and the depression is episodic, not chronic (unlike my own). My son is very smart (as in high IQ) but has deficits in areas of executive functioning that make it difficult for him to complete tests and homework on deadline. His processing speed may be negatively affected by poor sleep hygiene, which may or may not be something over which he has control (we probably need to get a sleep study).

The psychologist recommended a 504 plan and accommodations like extra time for tests and assignments, or maybe shorter assignments (e.g., being allowed to show mastery of a skill by completing 15 problems instead of 30). My son goes to an ordinary U.S. public high school, and I have no idea how receptive the school will be to bending the rules, as it were, for this boy whom many perceive as simply lazy. Anything I do will be second-guessed by my ex-husband, who is very concerned about stigma and very anti-medication (though my son is himself open to seeing if a stimulant would help).

The school year has already started, so I'm now in a rush to get supports in place. I know there's a lot to read here, and the onus is on me to educate myself, but any initial tips/encouragement from those of you with greater experience would be very welcome. Thank you and best wishes to all!
 

InsaneCdn

Well-Known Member
If you are in the US, you need to be fighting for an IEP, not a 504. Only IEPs have "teeth".

ADHD minus the "H" = what used to be referred to as ADD. It is often missed, because the hyperactive kids are more noticeable (as in, more disruptive to the classroom).

A neurotypical evaluation is thorough, but there are areas that they do not specialize in. Is there a discrepancy between how he does in the classroom, and how he does when they work with him one-on-one in a quiet room? There was a huge gap here with my kid, and the problem wasn't entirely ADD. The next piece of the puzzle was Auditory Processing Disorder, in particular problems with auditory figure ground: his hearing was normal, but in the context of background noice, he heard everything equally and had a hard time figuring out where to put his focus. There are specific interventions for Auditory Processing Disorders (APD), but it usually requires the involvement of a Speech Language Pathologist (SLP) and usually advanced (post-doctoral) auditory specialists.
 

Rannveig

Member
The psychologist only mentioned a 504 for some reason. We don't have her written report yet (only got the oral feedback), so I'm not sure if there was a reason for that, but I'll keep your point in mind as we go forward.

And yes, for years I was asking the teachers if Odin might have ADD, but they always said no, and now I'm regretting listening to them and not getting him evaluated earlier. The reason they gave was that he couldn't do as well as he did on standardized academic tests if he had an attention problem...and then they went back to complaining about how he didn't bring what he was supposed to to class, didn't complete his homework, didn't finish in-class assignments, and just generally didn't perform up to expectations.

I don't think there's any discrepancy between how Odin does in the classroom and how he does one-on-one, although the testing did show that he has more difficulty with verbal instructions than with written instructions. I know that I myself have trouble understanding speech when there's background noise; is this something that's genetic? How did you get your kid's Auditory Processing Disorders (APD) diagnosed? And did the specialized interventions prove helpful?

I'm getting the grim impression from my initial reading that schools are quite resistant to offering accommodations. Will it help that I can present a complete neuropsychological exam report from a licensed psychologist, or will they insist on starting from scratch with their own study?
 

Copabanana

Well-Known Member
Will it help that I can present a complete neuropsychological exam report from a licensed psychologist, or will they insist on starting from scratch with their own study?
I would go to my Pediatrician and request that she or he write a letter. If he also prescribes medication, there is not a leg the School District and stand on.

Throughout my son's time in public schools he had an IEP. He was classified ADHD/Other Health Impaired.

I do not know if I would want to share the neuropsychologist report with the school. It is for you to advocate for him. I would see how far you can get without it. I really do not trust the schools, but that is me.

I do not think the school needs to know he is depressed. I would not want them to push that he is E D. That is what happened in my son's senior year in HS. Beyond my back (I was out of the country) the school called an IEP and changed my son's designation from ADHD/Other Health Impaired to E D, Emotionally Disabled.

I agree with Insane. A 504 is not binding. I worked in schools and in mental health with children. I would go for the IEP.

Good luck.
 

Rannveig

Member
Oh, wow, I'm really glad I asked about this, as I hadn't imagined that the neuropsychologist report could be anything but an asset. Thank you, Copa. If you wouldn't mind, could you tell me what kind of services your son got on the basis of the ADHD designation? I'm still not sure what it will be realistic to request. Of course, I'm also interested in what anyone else's ADHD kid was able to get, especially if the problem was more inattention than hyperactivity. This site is indeed a soft landing.
 

InsaneCdn

Well-Known Member
Some common accommodations for ADD/ADHD:
- outline of class materials at start of class, so student can follow along
- copies of notes - sometimes an aide takes notes for a number of students with various challenges, or the notes of a good note-taking student can be copied (if the student and parents agree)
- more time to complete work - especially for in-class work. If others have to finish within class time, the student with ADD may be able to take it home, or work on it in a study period.
- untimed exams taken in a separate environment (this is not the same as unlimited time... it means they do not have to be concerned about the clock; rarely, they may take a little more time, but usually just not having to worry about the clock cuts anxiety and increases performance)
- reduction of volume for practice work - math problems, for example, the student may only do half of them (chosen by teacher, not student :D )
- teacher specifically checking with student early in a project and at check-points, to make sure they understand the requirements, that their work is on target, and progress is being made
- allowances for non-neurotypical thinking - this one is huge, if you can get it. We didn't have it in a formal plan, but we had teachers that would read written work and think "what are you thinking"... if they know about and understand ADD, they can often figure out the twist in thinking, mark accordingly, and then work with the student to understand what was really expected.
- teacher to write all requests and requirements on the board, including outline of plan for this class

Note-taking and outline are also common accommodations for auditory processing disorders.
 

Feeling Sad

Well-Known Member
A 504 is just accommodations in the classroom, i.e. longer time on tests, preferential seating, typing instead of writing responses, etc. An I.E.P would legally dictate that your son receives services, what types of services (by what specialist SAI, OD, Speech therapist, etc.) and how many hours per week. It would also have goals that were very specific as to his current baseline, percentage correct expected, how many prompts, in what setting, the time duration allowed, and how the data was to be evaluated, i.e. observation, anecdotal notes, oral answers, written, etc.

I hold a Mild to Moderate Credential and I have written I.E.P.s. They are legally binding and cannot be amended by an addendum or updated at the yearly meeting without a parent present. It is against the law. The parent has a right to ask for more time to study it or may refuse outright to sign if they do not agree with all of its contents.

As teachers, we are told to never tell a parent that their child needs more testing. If we say that, the district must Po a for it. (As a teacher...I get around this). If the parent says that they are going to their doctor, we can say that would be fine. You are correct in stating that the district is hesitant to test your son or give him an I.E.P. They, sadly, want to save money. I have worked very hard to make sure that my students receive all testing and services that they require. Once a diagnosis is proven by tests, the district has to provide services in the least restrictive setting, by law.

Often, the district offers a 504 if they do not feel that it is serious enough to warrant an I.E.P. A 504 is free for them.

During the I.EP. the parent is to be actively involved in the process...few parents know their righrs. Were you given the brochure defining your rights? By law, you must be given one. They are to write down your input about things that you want changed. All of the notes taken during the meeting are recorded and officially filed. You must receive a copy. At the meeting, you will receive the rough drafted I.E.P. Then, in a few days, if you signed the forms in agreement, you will receive the official I.E.P. with all of the corrections and notes.

I would talk to the school psychologist about your concerns and the symptoms that you are seeing. This will be more conducive to future testing than demanding more tests. This way, he or she will be more apt to putting in an order for more testing. This has to be approved. Also, you have a legal right to have a copy of all tests and to have it explained to you in very clear language.

Have you been asked to fill out a long evaluation on your child that covers EVERY possible behavior or deficit? This needs to be done. When you tell them actual behaviors that you view as a parent, whether during his study time or free time at home, they will be more apt to listen. Yes, you can have the tests done yourself. But, they can be quite expensive.

The school psychologists are extremely over-worked, often going between schools. Often, they need to come in to observe. It takes at least 3 months to start the wheels turning. At my school there is always a large backlog of cases. Again, they have to see that it is serious enough for an I.E.P. Discuss behaviors that you have observed or any issues you feel they have cognitively.

You could also, if they refuse further testing, get an advocate for your child. This advocate would attend ALL meetings to make sure that your son's legal rights are satisfied.

Be the squeaky, all be it polite, wheel!
 

Rannveig

Member
Thanks so much, Insane and Feeling, this is hugely helpful. Just to clarify, I haven't approached the school at all yet. I did tell my son's guidance counselor that were we getting a neuropsychologist evaluation and that I would get back to him when I got the results. (Seemed like a good way to save time, if not money.) I just got the oral feedback yesterday and am expecting the written report by the end of the holiday weekend. And then, on Tuesday, I gather that while continuing to work full-time -- in an office 40 miles from Odin's school -- I will have to start to advocate full-time for my son. X will be no help, though he will expect to be kept fully informed of my efforts. I had looked forward to turning over the neuropsychologist report to the school and saying okay, now do something about this, but I gather it won't be that simple(!!!). I definitely can't afford an advocate. I haven't even paid for the neuropsychologist exam; it's just hanging out on my credit card.

I think that untimed exams and reduced volume for practice work are going to be the key accommodations for Odin. I'm interested in the idea of allowances for non-neurotypical thinking. I don't know if it's related to this, but Odin frequently gets in trouble with math teachers for not showing his work or not using conventional algorithms, even though he comes up with the right answers. So, for example, last year he got a final grade of C in his math class but the highest possible score on the state's standardized test (which was untimed, incidentally) in the same subject. The math teachers claim that they are justified in marking him down for not showing his work or not solving problems in the way they've shown the class because "in industry" you have to be able to show other people how you have come up with a solution and because "even if he can figure things out in his head now, he won't be able to do so as the math gets harder." I'm not sure how hard I'm justified in fighting back against this philosophy. It saddens me that his grades could keep my gifted son from being able to pursue the engineering career for which I know he has the aptitude as well as the desire. I do want to be polite and respectful at all times. I know teachers have a really hard job, and my son's deficits do tend to look a lot like laziness and a sense of entitlement, as might my advocacy for him.

Ugh, I am definitely feeling in over my head -- but, again, really glad to have everyone's observations and suggestions. Thanks so much for helping me through this long weekend as I adjust to the diagnosis and its ramifications.
 

Feeling Sad

Well-Known Member
No...you don't need an advocate. I was saying that if the school refuses to give him the accommodations or services that he needs, then a parent could seek an advocate.

I should have read your post better. You told the counselor about the testing. You should give the school psychologist a copy and schedule a conference. Share with her or him your wishes for a 504 or an IEP. A letter from the doctor with his recommendations would be very important. The doctor could be at the meeting. Copa is right in stating that you can decide what parts of the testing to divulge. Speak to the doctor about your game plan and what you would like for your son.

Often, in class, I make modifications private. Meaning, the student knows that homework is cut in half, tests are modified as well, and they are given more time. Other students are not aware and corrected work and tests are passed out privately. I work on students not feeling stigmatized. We all learn in different modalities, some are visual learners, some are auditory learners, while others are kinesthetic learners.

My son got in trouble as well for not writing his process of solving in math questions. He tested in the upper 2% on his IQ test, yet he received F's on his math work. He told me that it was so easy, why should I have to show my work?

Just relax and go see the counselor. They will work with you. If you want additional testing done, then speak to the school about your concerns. You are your son's advocate. Get informed about your rights and involve your doctor. The school has to meet his needs. InsaneChn's list of accommodations was spot on!

Good luck!
 

Rannveig

Member
Feeling Sad, you sound like a wonderful teacher; I hope there are many more like you (preferably where I live)! Seriously, it's very helpful to know, from your example, what a good response from faculty would look like -- so that I'll know if I'm not getting it. And yeah, Insane's list of accommodations was invaluable.

Sounds like your son and my son would totally relate. I hope your son is doing okay now.

Based on the advice here, I'm going to write to my son's neuropsychologist and ask her, if she hasn't finished her report yet, to keep separate the parts about the ADHD and the depression in such a way that I could present the ADHD part verbatim to the school without having to show them the depression part. Maybe that's not practical, but it seems to be worth a shot.

Also, I'm going to go online and try to identify the school psychologist, if any. I've only dealt with the guidance counselor up to now, and he's a nice guy, but clearly I need to move this to another level.

So glad I talked to you all. Thank you so much!!!
 

InsaneCdn

Well-Known Member
Copa is right in stating that you can decide what parts of the testing to divulge.
The last round of testing done for my kid, we were given two reports. One was the "medical" report, and only the family doctor and myself got that. The other was the "school" report, and we figured out together which parts the school needed to know.
 
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