Is there any place in the world for my beautiful daughter?

Im sorry it was handled so poorly-communication should have been better especially when you were doing your part(some parents purposefully DONT tell schools about med changes to see if they notice)

Are they really looking to move her NOW? Or is this the preliminary to moving her next fall. I just always feel these things move slowly and cant imagine they are talking right this minute

I would try to negotiate a time extension if you still feel this is the best place for her. See if they will agree to give it another 6 weeks with meds under control

Be pleasant but firm in your conviction that this need to be reviewed in light of the new med info(well, it shouldnt have been new)

Because I homeschooled my son for a year, he fell into the new racial/income evening program our area initiated

I was so worried. While the 6th grade is a nice mix with the new ruling affecting all that group, the 7th grade is still mostly low income kids from a VERY rough area. This schools test scores are the worst in our area

It has turned out to be a wonderful placement for him! Since it is not a popualr choice, classes are small(8-20 while the popular middle school is running in the 30s) The teachers here are tuned into short attention spans and hands on learners so my ADD, low verbal kiddo fits in just great.

It caught me totally by surprise-serendipity, perhaps? Who would have thought the worst performing school in the district could be the answer to my hopes???

So, worse case scenario-dont panic. What appears to be ‘right’ for our kids often isnt

How much medical evaluations have been done on her. Her alphabet soup dx suggests a systemic problem.

I hate to say it but today’s schools are a mess. Today’s teachers for the most part are an abomination so that probablky explains why she is OK at home and so distraught at school. There are probably things going on there that you are not aware of.

I am thinking that there may be an enviromental influence such as sick building syndrome, chemical allergies, food allergies ect..

When I was a kid I developed horrible hives. As it turned out it was from a chemical called choridane that was being used to treat lawns. No one else was sensitive to it but me.

She’s only seven so i doubt every avenue of causes has been explored.

If I were you I would put her on the elimination diet for a few weeks and see if her symptoms improve. I’d alos get every blood test under the sun performed on her as well as MRIs and PET scans. Leave no stone unturned.

I recently got quite an education from my doc a D.O. We were discussing cranial therapy and the validity of spinal manipulation for treating brain based disorders and he told me that that sort of treatment is very valuable and effective for some patients.

There are D.O.s and D.C.s who specailize in cranial therapy and something that would be akin to neurological manipulation where they have you do certain movements that some how effect your brain.

Check out everything and good luck.

Does the school understand that the meltdowns were made worse by the Ritalin, and are they willing to hang in and see what baseline looks like when the Ritalin is discontinued? Your doctor is right on about the gasoline on the fire. If the school can’t understand that and work with you, I am not so sure it’s such a great place, whatever the reputation. See what you can negotiate, making sure they know what your doctor said about the meltdowns being related to the stimulants. If it doesn’t work, I’d seriously consider a different setting, even homeschooling. If they are so wonderful, they ought to be better at communicating and be more flexible about adjusting to your child’s fluctuating needs, especially when the cause is known.

There is probably more going on here than meets the eye. Her dx is not so much of a dx but a labling of symptoms. The school may not be the cause but they seem to be making the situation worse. It sound to me like the child is terrified.

I think you have to think about what is more important a 7 yearold’s education or her emotional and psychlogical well being.

I’m with Steve the school. I think the schools stinks.

Thanks for all of that feedback on everything.

I also think the communication from the school was pretty awful. I think it’s probably uncharacteristically awful, but I don’t know for sure. If this happened all the time there would be no way they could keep their reputation—the LD parents community is just too small.

I still feel really disappointed about how poorly it was handled. It makes me wonder, as all you have wondered, just how wonderful the school is. I loved having her going there, and I think she’s loved it too. But something like this makes one doubt one’s judgement and perceptions.

Things are a bit better now b/c we met with the principal and we pointed out that they’d gone from no communication to suggesting we find a new school in 5 days time when no one was injured, nothing was broken, and she was never a danger to anyone—just upset. They (the school) seem to understand that this was not appropriate, though we are still scheduled to look at another school next week. We are trying to keep an open mind about new schools, as well as trying to keep an open mind about her present school, despite the very strange and inappropriate way this unfolded.

They are willing to see what happens when she’s been off the Ritalin for a while and when the Paxil dose is adjusted to help with her anxiety. That is only reasonable.

I think the hard part, as a parent, is feeling that my kid is being rejected without being given a fair chance, not that life is fair, as we all know so very well. And to have been so blindsided about the tantrums. If I’d known I would never have put her on Ritalin. I’m just amazed that something like this could happen. I’m a really engaged parent… I’m not checked out. And still I did not have critical info about how my kid’s days were going.

At one level I wish we could home school her—then we’d know what was going on—but it’s not really an option for us. We need to have others caring for her while we’re making a living. And I think I’d be a pretty awful teacher for her. I didn’t have any learning difficulties—instead I was precocious—so I find it all pretty baffling. How hard it is for her breaks my heart.

As for the DX problem, it’s an ongoing one. She has been evaluated and evaluated and evaluated and basically she gets called all of those different acronyms … At this point I’m willing to say that she’s probably very mildly autistic … but her sense of self-other is not impaired, only her use of language. So maybe it’s really a classic auditory processing problem. I really don’t know.

Anyway, thanks to all of you for your advice and concern. I will let you know how it all unfolds …

If anyone has a recommendation of someone they think could give us a better diagnosis, that would be great.

I still think a fresh start with some different doctors would be worth a try. Instead of going in with her dx start fresh like this is the first time.

Doctors are lazy and they will often take the word of another doc as gospel and the more docs you see the more the “proof” of the orignal dx get amplified. People get misdiagnosed all the time. My best frienf had chronic gallbladder disease but because one of the tests was wrong he spent to years going from doc to doc. They sent him to a shrink because they said his awful pain was psycho somatic inspite of the fact he looked like death warmed over. Finally I talked to my doc about him and got him in to see him. They repeated the gallbladder tests and found that his gallbladder was so bad that it was basically a dead organ inside him. 3 days later he had it removed.

This just illustrate something called diagnosto genesis. All the BSing around ended up getting him diagnosed as a mental case. It actually was the shrink that finally told him that he didn’t think the pain was in his head.

There are so many overlapping diagnoses with her that I think there is one hidden cause.

Honestly, I think that s a pretty typical package of dx’s

My son has trouble with language as well and we have been down all those paths except OCD

This stuff isnt clearcut-there is no genetic testing like there is for Downs. There is no blood test

I think EVERY professional will give you a different answer based on their experience and area of expertise.

We all want THE problem becase we all want THE answer

My son is 13 and I work in casemanagement for 0-3 yr olds with delays

I see very few answers out there for anyone; my 0-3 yr olds on waiting lists for therapy are progressing at about the same rate as my kids receiving therapy. Maturation is a wonderful thing!!!

I came to a point with my son where I stopped saying “we have to know what it is so we know how to fix it” and just focused on fixing it

What works for your dd? What doesnt work? Sure, read the literature for ideas on what typically works for kids with those various acronyms so you have a place to begin, but dont get caught up in it

The chance that this is a medical problem that can be fixed with medication or surgery is next to non-existent; it took me 11 yrs to figuere that out with my son

As an academic tutor, I have to back up what marycas says. Sooner or later you have to sit down and teach the child reading and math and all the rest. You can get caught in the test and retest trap for years; you never get THE final answer (well, not in most cases) and all that testing hasn’t taught the kid a darned thing — except maybe to make excuses. If it takes a lot of time and work for this child to learn certain skill, well, the sooner you start, the sooner the time and work will get done. You need to be flexible and find ways to reach the student of course, but the testing only gives guidelines anyway. Good luck and please feel free to ask for advice on methods of teaching.

One of the problems with the alphabet soup dx is that rarely a cause for any of the dxs is identified. A “cure” will never hapen without finding the causes.

I hope the day comes when an objective determination of causal relationships can be made. That is why it is important not to take a subjective diagnosis as gospel.

When brain abnormalities can be identified I would see that as a point from which to proceed in making the correct diagnosis. Until then don’t close your eyes to other possiblities and “non medical” remedies.

This is just a guess but I would bet that both children were either colicky or fussy babies and I would bet that they both had chronic ear and throat infections.

[quote:f6ee1d9b12=”marycas1”]Honestly, I think that s a pretty typical package of dx’s

My son has trouble with language as well and we have been down all those paths except OCD

This stuff isnt clearcut-there is no genetic testing like there is for Downs. There is no blood test[/quote]

I’m with you marycas1 and victoria. I actually don’t mind having the multiple dx’s that much. Basically they are descriptions. The OCD and ADHD diagnosis describe behaviors that could also be included in a PDD-NOS/autism diagnosis. The only thing is that the OCD/ADHD diagnosis leads to psychopharm solutions, while the autism diagnosis tends to lead to very intensive behavioral interventions (ABA or floortime, for example).

As far as I can tell from read the DSM-IV, ADHD and high-functioning autism share so many characteristics that they could practically be the same dx.

Sometimes when I look at my daughter (and my husband, who has an ADHD dx that he got at age 38) I think that had they lived in a time when being handy (tactilely skilled) rather than symbolically abstractly oriented (particularly in regard to language) that they’d be very very valuable members of society. I could picture them doing the fine craftwork that was needed in pre-industrial times… hand sewing, hand woodworking. Their kinds of intelligences would have been extremely valuable. Since we live in a literate and technological society, their skills aren’t really that valued any longer. The tactile-kinesthetic learners of the world are therefore disabled (LD) rather than just different in their abilities.

That’s one of the reasons that I wonder if there is any place in the world for my dear daughter. How can I help make a world that will embrace her and her differences even as she learns to accomodate herself to this world by learning to read and write and do math. (BTW, she’s great at math; so many language delayed kids are.)

Mothersvox,

Isn’t it kinda sad how a person’s value is judeged and evalutated by our societal norms? I think it shows that we are an incomplete society that prizes one type of individual’s intellectual functioning over another’s.

Were are in many ways a society that puts competition and goals ahead of cooperation and satisfaction.

I still would not run so confidently with a dx that is so nebulous from a scientific and objective point of view.

The DSM is unscientific at best. There may be some quasi valid statistical data init but overall it is based inconjecture and subjective conclusions. This is not to say that parts of it are not valid but relying on DSM diagnostic criterian for brain based disorders should allow quite a bit of room for skepticism.

There is testing for OCD, depression and other mental illnesses other than the typical shrink style evaluations. They are not always readily available but they are another piece in the diagnostic puzzle. For me this would not be a horse I would be comfortable riding.

The APA is a contrversial group with close ties to big pharma. So don’t think for a minute that the drug companies don’t have some influence as to what goes into the DSM. Personally I think the DSM contains some made up disorders and Ouji board style diagnostic criteria.

To further illustrate my point:

Perhaps the most significant conceptual shift (from DSM-III-R, 1987, to DSM-IV, 1994) was the elimination of the rubric organic mental disorders, which had suggested improperly that most psychiatric disorders…had no organic basis.” Notice that these authors have assumed, but not proven, that “most psychiatric disorders” have an organic basis, making it improper for anyone to suggest otherwise. They would shift the burden of proof to those who doubt and question, hardly in keeping up with science. What they and the American Psychiatric Association (APA), with it’s DSM-IV, have done, was to absolve psychiatry of every physician’s obligation to make a fundamental, patient-by-patient, “organic”/ “not organic,” “disease”/ “no disease” determination. They have absolved themselves, and anyone wishing to join them in such diagnosing, of having to demonstrate an abnormality—pathology, by way of proving that psychiatric “disorders”/ “diseases” are actual diseases.

Again, this is a horse I would not ride for very long if I were you.

I agree with all of the above! I did psych diagnosis for a year or so and I can tell you that it ain’t no science! Everyone has their favorites that they can make stick by looking at things a different way. My favorites were PTSD and Adjustment Disorder, because that got my “evaluees” a chance at real therapy rather than just medication. Others diagnosed people “Bipolar” or “Generalized Anxiety Disorder” for exactly the same symptoms. We used to argue about appropriate diagnoses like it was a political campaign or a court hearing!

I think Victoria got it right - the real question is what works. You have to decide what you want and pursue it, regardless of what anyone thinks. If one person won’t help, or one school doesn’t work, move on and don’t move back. Don’t apoplgoze for insisting on results. Diagnoses are only helpful to the degree that they help you decide what to do. If the diagnosis has people doing harmful things, ditch the diagnosis and go back to first principles - miserable children are not the goal of “mental health” treatment!

Do what you need to do and don’t worry what the “diagnosticians” think. It’s your child that is suffering and needs your help - they don’t have to live with the results of their insensitivity!

[quote:61f58ce09e=”Steve”]I agree with all of the above! I did psych diagnosis for a year or so and I can tell you that it ain’t no science! Everyone has their favorites that they can make stick by looking at things a different way. My favorites were PTSD and Adjustment Disorder, because that got my “evaluees” a chance at real therapy rather than just medication. Others diagnosed people “Bipolar” or “Generalized Anxiety Disorder” for exactly the same symptoms. We used to argue about appropriate diagnoses like it was a political campaign or a court hearing!

I think Victoria got it right - the real question is what works. You have to decide what you want and pursue it, regardless of what anyone thinks. If one person won’t help, or one school doesn’t work, move on and don’t move back. Don’t apoplgoze for insisting on results. Diagnoses are only helpful to the degree that they help you decide what to do. If the diagnosis has people doing harmful things, ditch the diagnosis and go back to first principles - miserable children are not the goal of “mental health” treatment!

Do what you need to do and don’t worry what the “diagnosticians” think. It’s your child that is suffering and needs your help - they don’t have to live with the results of their insensitivity![/quote]

Well said!

I was at a party once and a psychiatrist said to me, “one of the most dangerous things in the world is a psychiatrist with a precsription pad.”

Originally the DSM was OK but it has gotten totally unscientific and the commitee of educated chimpanzees who write it are tied to big pharma.

One problem is that people are going to psychiatrists for a diagnosis of LD. Folks, LD is not a mental illness. It is a neurological condition. If you want to understand what aspect of brain function is affected, go to a neurologist who specializes in diagnosing LD. These are the people who have knowledge of what parts of the brain control what function. If you want to understand why a child experiences certain difficulties and how maturity may change the picture, a neurologist can tell you about brain function and development. A neurologist will tell you that motor control and emotional control follow along the same circuits in the brain so that a child with motor skills issues may also be a child with poor frustration tolerance. A psychiatrist will tell you that the same kid is anxious or oppositional and may prescribe medication, without any discussion of how addressing motor issues may help emotional issues.

Wow! That’s what I am dealing with right now. I talked with the neuropsychologist that diagnosed my son with “mood disorder” a year ago. My husband and I didn’t buy into it then and still don’t. I called to ask why CAPD was not considered (especially since we are observing that disorder’s characteristics with our son). She said that she does not recognize that disorder. It can’t be measured. Who and what am I supposed to believe. Currently, the speech and language therapist at my son’s school is testing him. Help. All I want is for my son (8 1/2 years old) to be recognized as an individual, regardless of issues, WHO IS GOING TO BE A MEMBER OF SOCIETY!!!!! He is a great person.
We-five

CAPD can’t be measured, but a “mood disorder” can? Where does s/he get that from? Mood disorders are totally unmeasurable in any objective way - the “tests” (like the Beck’s Depression Inventory) rely entirely on subjective self-report. I would think you can be MORE objective about an auditory processing problem, because you can at least identify which tasks are difficult, even if you don’t know the reason.

Sounds like Guest’s advice is sound to me!

People really need to look at the big picture.

This thread began with dissatisfaction with school communication; my question is who picked this school and why, how/who funds it, and what steps can be taken to continue this placement if you are happy with your child’s progress? Regardless of your child’s dx, it must have been appropriate for a private placement…what has your child’s progress been like, and does she “fit in” with the school community?