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Tearing my hair (long,sorry)

Submitted by an LD OnLine user on

I haven’t been here in a while (not since the board changed format— does this tell you?) I am really desperate for some help and know this is always a good source. Can anyone tell me what page we’re on, and where we should be looking for help?

My son has been diagnosed with ADD (inattentive and disorganized) LD (dysgraphia) and chronic depression. We have been piecing the diagnosis together since 5th grade when we picked up the depression. He was privately tested and had scores ranging from 12th grade to 2nd grade on various subparts. Based in part on that testing, he was found to be math-gifted, arithmetic-weak (aka astrophysics with a pocket calculator for the arithmetic!) The “absent-minded professor” is not funny around our house— this is him.

School has been downhill since his initial workup; he is now in 9th grade. He is at a small parochial school without a 504, but probably getting more support than he ever got in public school where they basically ignored the 504 he did have.

We have modified meds (increasing them to triple the dose he was taking last spring) with more apparent attentiveness but schoolwork is getting worse. He actually has less schoolwork and fewer demands than in 8th grade, except for trying to learn a language now.

The teachers report he does well participating in class but is failing almost all his classes because he doesn’t turn in the work, fails the tests, etc. We have been working very closely with him. He has close accountability so we have a better handle on the work assigned and we are in constant contact with the teachers who seem to think he is just blowing off school, lazy, unmotivated, etc. They don’t see the frustration and tears we have at home.

It is becoming apparent that he has EVEN LESS short-term memory than he had last year. He gets home and remembers NOTHING from class. The work is not that difficult for him, when we re-teach it, but there are simply not enough hours in the evenings and weekends to do it all with him plus getting the assigned homework done. If I could home-school him I would; he does much better one-on-one. But our instincts were right— he prefers the structure and discipline of the parochial school to his very chaotic public middle school. I shudder to think how far behind he’d be, lost in the tidal wave of a freshman class of 1200.

Tonight I looked at a spiral notebook he is keeping for one class. Not only did it have work from several classes (which I have come to expect, we are always pulling it out and re-sorting) but HE HAD DONE THE WORK FOR THIS CLASS RANDOMLY THROUGHOUT THE SPIRAL– wherever he happened to open the notebook. No wonder he can’t find the work to turn it in, or to show the teacher?!?!? When asked why he was doing it that way, he was really did not understand how this could be a problem.

We have implemented all types of organizational tools (planner, color-coded folders, hanging files, electronic rolodex, etc.) He seems interested and enthusiastic for the 10 minutes he remembers about them. The teachers are supposed to sign his planner and that sometimes happens. They are pretty good about responding to calls and there is a homework hotline, eliminating some of the communication problems we had last year. But things just keep getting worse.

The developmental pediatrician he sees says if there is no improvement in 3 months he will refer him for a neurological workup. This doctor is affiliated with the local university as part of an ADD clinic and research center.

HELLLPPPP!!! Are we on the wrong page? Should we be investigating some other type of problem? I have been thinking he needs the help of an occupational therapist since he seems to be “wired differently.” He is a bright kid who wants to do well but is unable to sustain the effort.

I will be very grateful for any input any of you have. Thanks in advance.

Lisa

Submitted by Anonymous on Tue, 10/23/2001 - 4:29 PM

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We can tell a difference in how he “presents” at home with and without meds. He has his meds at school, though (dexedrine CR right now, although we’ve worked through the spectrum) and he is clearly not “receiving” while at school. Thanks for your help, and any light you can shed on this!

Submitted by Anonymous on Tue, 10/23/2001 - 5:26 PM

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Has he been evaluated for CAPD—central auditory processing disorder? Some of what you said sounds like my son. Memory and receptive language issues can be part of it. Ritalin ect does nothing for CAPD. You can have ADHD and CAPD.

Submitted by Anonymous on Tue, 10/23/2001 - 7:48 PM

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I have mentioned this to the ADD ped who dismissed the idea, but I am going to ask our adored regular pediatrician for a referral. Am I asking for an audiologist or who does this eval? Thanks.

Submitted by Anonymous on Tue, 10/23/2001 - 8:16 PM

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Here’s a website that might help. An audiologist does the testing. The fact that he seems to participate in class seems somewhat incompatible but there are different types of CAPD, some of which deal with memory issues.

http://pages.cthome.net/cbristol/capd.html

Submitted by Anonymous on Wed, 10/24/2001 - 2:16 AM

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I would bet he is verbally awsome:-) I would look possibly towards aspergers too.It is characterized by a high verbal IQ and a lower performance IQ. The gap is significant 20 or more points.Of course any gifted ld kid would have a spread there too. It just depends on the kid. I have two gifted/lders. Both are severely dysgraphic. They also have ADHD. My youngest has CAPD,diagnosed by an audiologist. Information auditorily just doesn’t process the same for him like others. He has a hard time retrieving words. Language therapy,and or an FM hearing device is reccomended for this. Of course in class lots of visual cues,and visual tasks. Maybe a visual display of where stuff goes would help with organization? Don’t know. My kids both struggle with organization, it’s really part of the disability. In ADHD and LD.AND GIFTED,for that matter. Even their dear old dyslexic mom is disorganized,but I learned to be organized in an unorganized fashion.

You don’t mention how well he gets the stuff down? Can he read it? Is his writing so laborious that he is doing good to get all the info down? Without remembering which color notebook to use? Maybe a tape recordered diary? You can get them pretty cheap at radio shack.

For my kids,it definitely helps to be in a smaller classroom situation,especially for my kid who has trouble processing auditorily.

Both of my kids are currently in OT. They are involved in the IM program. Interactive Metronome. This is mainly ,because of their writing difficulties,motor planning,and the program states they have some success in attention span. If the “out of sync” child sounds like yours you might look into this. The program works on timing,and being in rhythm with themsleves. You might check this out.

In the long run the most helpful evaluation was the one that told me how they learn,and how they can’t learn.

Hope all this helped.

Submitted by Anonymous on Wed, 10/24/2001 - 5:20 AM

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getting him an Assistive listening device? This way he is tuned in to the teacher and can’t zone out. There have been studies done on kids who were ADD and when they used an Assistive listening device they were more attentive and did better at school.

I constantly have to monitor my daughter’s notebook and her schoolwork. She is ADD and has CAPD. She has used an assisistive listening device for 8 years now and because of the Assistive listening device she has great auditory memory. In regards to remembering things for tests we have to use lots of mnemonics with rhymes. She is inconsistent on her tests, she can get an A and the next test she gets an F. We too spend hours reteaching her subjects everyday. It is hard, she does go through periods where she is very organized and others where she is all over the map, missing assignments, forgetting her books etc..

I more or less act as an ADD coach for her…24/7. Also, does your son know how to take tests? Does he have the skills to weigh all the pro’s and con’s before he answers them? There is a real art to taking multiple choice tests and when kids are impulsive and inattentive they can really have problems with these type of tests.

Submitted by Anonymous on Thu, 10/25/2001 - 3:14 AM

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Sounds like ADD inattentive and disorganization to me. You could discuss medication changes with his doctor. Maybe a different medication would work better.

In the meantime, try a paper clip in that spiral notebook on the page where he should be at. Or folding down the edge of the next clean page (I like the paper clip better) Would his teachers e-mail his weekly homework assignments to you? Is there a school website that homework could be posted on? Could he have a “homework buddy” or is there a neighbor with a child in the school that you could call in the evenings to get the real scoop on the homework?

Why does the doctor want to wait three months? Did he just have his medication increased? While I’m not sure how much help a new doctor will really be, I don’t get the three months wait. Your son is having problems now.

Submitted by Anonymous on Sun, 11/04/2001 - 12:06 AM

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I think the assistive listening device is really worth a try. Many kids who are ADD without the hyperactivity also have CAPD. Some do well the listening device.

Regarding occupational therapy, by all means ask about it. My understanding, though, is that OT therapy or sensory integration therapy get much better results with very young children and that after fourth or fifth grade, the progress is much slower.

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