Question or Thought Regarding Professionals

[quote:0bd32e6954=”we-five”]Just have a thought or maybe its a question. I have read some on ADD, ADHD, Asperger’s, CAPD and read often about these disorders being misdiagnosed. Why is this happening. My husband says that each professional focuses on their “thing”. Are these professionals missing things or discounting things that won’t let them attach their label to the person they are evaluating? I wonder this because of my conversation with an audiologist, who indicated she thought there might be some type of learning disability given certain test scores. The other professionals infact indicated no learning disability. If this is confusing I am sorry. I am still trying to process everything. I believe I need to start questioning and not stop until someone gives me an answer that makes sense or truely fits what is going on at school and with homework.

We-five[/quote]

If someone is learning imaired they are LD. LD is a catch-all term with not much meaning.

The so called experts are not. They rely on psycho-metric tests that are often flawed. Its about as scientific as going to a psychic.

The so called experts are not real up on all the neurological componet involved in cognition.

You are not the only one who is confused. Basically they have a lot of terms that have no real defintitions. They throw out some clever sounding psycho babble and then explain their misdiagnosis in broad terms. They will make some reccomendations that either won’t be followed by the school or won’t work in the real world but do work to bolster their errant profession.

I have a background in children and adult mental health care and education, and I can tell you that there is tremendous controversy over what even constitutes a diagnosis, let alone how to tell one from another. Your observations reflect the confusion in the field, not a particular lack in the practitioners you are seeing. Although there are some wonderful practitioners out there, they aren’t wonderful because of their diagnostic skills, they are wonderful based on the results they get.

That’s why I always recommend that people don’t spend too much energy on “diagnosis” and spend a lot more on finding out what works. A diagnosis is only as good as it is able to predict a successful intervention. Focusing on successful interventions saves a lot of wasted time. In fact, my new mantra is this: “If something works - keep doing it. If something doesn’t work - do something else!” If we all followed this dictum, a lot of time and money that is spent on evaluations and testing could be saved. Do what works, and don’t expect the professionals to tell you what it is that will work. They don’t necessarily know!

[quote:45af9ba34a=”Steve”] “If something works - keep doing it. If something doesn’t work - do something else!” If we all followed this dictum, a lot of time and money that is spent on evaluations and testing could be saved![/quote]

Or, lots of time and money, not to speak of chances to help a child, could be painfully wasted while parents try to diagnose their child because they distrust professional help. You might get lucky and stumble on the solution or you might keep floundering when a little information from a knowledgeable source would have pointed you in the right direction. The wise parent will seek professional help and use it as a guide but will also educate him or herself about conflicting opinions and alternative approaches. Then that parent will be sure to ask lots of questions, read lots of literature on the topic and educate those who work with the child about the nature of the child’s difficulty and what approaches seem to work best.

I understand what you are saying. Maybe, you can help me with understanding the school’s speech and language therapist before I scream out loud. Today, I spoke with her in the hall regarding testing that she is currenlty doing with my son. To begin, the school has previous evaluation diagnosing my son with Asperger’s. I have not agreed with this and am increasing with my disagreement because of more information and observation. She knows this. She told me today that my son did not have any difficulty at all with the sub-test (figurative language stuff) he did. It is my understanding that a child who has Asperger’s would have difficulty with this type of sub-test. When I asked if there might be too much distraction (currently my son is on Concerta) in the classroom and this might explain things, her comment was “well you know kids with autism are not distracted it is just that there is just too much sensory overload”. I wanted to pull my hair out. Please help.

Thanks,
We-five

You bite your tongue, smile and say “so what can we about the sensory overload?”

I suspect what fixes the sensory overload may fix the distraction. Try to think of it as just a difference of words and focus on coming up with strategies

Theyve made up THEIR minds and you are unlikely to change them

Diagnosis is an art as well as a science, and human beings have far too many variables to be easily pigeonholed. I have nothinbg against a search for a good diagnosis, but meanwhile time is passing, often years. I am with Steve; while you wait and search for the firm diagnosis, you have to treat the urgent symptoms right now.
Good teaching requires trial and error and research for new methods anyway.
Look at Orton-Gillingham, the granddaddy of all effective LD interventions. Professor Orton was a professor of psychology and did all sorts of testing and research and wrote the formal papers. Meanwhile, he had the rare common sense to work with and the even rarer honesty to treat with respect an experienced teacher who had practical rather than academic credentials; Miss Gillingham made up practical day-to-day lessons and teaching materials and actually helped the kids with their problems in reading. The diagnosis without the teaching would have been yet another footnote and those people would probably never have learned to read. The teaching was improved by the research and efforts to diagnose effectively, but in the end it was basic good teaching that mattered.

I agree. How do I find a tutor that will truely help. My husband and I are concerned about money. I have looked into tutoring from centers. Too much. We have two other children and a morgage. I believe that there are people who truely want to help kids learn, but I don’t know how to weed out the individuals that look at just the bottom line. I could write more, but it is making me sad.

We-five

I have seen very little real good from profit-making tutoring centers. Basically what I saw (for all kids, not just LD) was assembly-line paper-passing, very little real teaching.

Independent tutors are going to be somewhat eccentric individuals, people who are not happy fitting into pigeonholes and following the standard schoolteaching career, but sometimes that eccentricity takes the form of really caring about teaching and about kids.

As far as the money, well, I frequently get people asking me for cut rates. Funny thing is, all of the ones I’ve seen have nicer houses, cars, and clothes than I do. I keep my rates as low as possible (maybe too low, you can ask my creditors) and when people try to play games with the prices I remind them that I am fighting with a mortgage and a backlogged electric/heating bill (in Montreal winter) just as much as they are and more so, and on a single income.
It’s going to be a sacrifice, but you can think whether you can give up prepackaged snack foods or restaurant meals or a holiday trip or a newer car or other options in life, in order to pay for for a long-term investment in education.

You’ll have to search for a tutor who really cares and also knows her stuff, but keep looking.

Sounds like your testing professional is not focused on your child, but on their tests. Saying things like “kids with Aspergers don’t get distracted, they just get sensory overwhelm”, just shows that she is thinking in terms of labels, not of children. Why wouldn’t some kids with an Asperger’s label also get distracted? What’s the difference between being distracted and overloaded when it means the situation isn’t working? What ideas does she have to reduce the “overload” if that’s what she thinks is going on?

I agree that professionals who really care about kids can be helpful, and their help should not be denigrated or dismissed, as it can be incredibly valuable, but I have no time to waste on people who put their personal need to feel “right” over the needs of the child. That’s exactly what I was talking about - the “diagnosis” does nothing to help you know what to do, it just creates a pointless argument.

Perhaps the correct thing to do is to say this: “OK - you think he has Aspergers. Great. So what are you suggesting the teacher do differently to see if your theory is correct? If he has Aspergers, I assume there are certain things one DOES to help a kid who has Aspergers - what are they, and when are you starting?” But don’t be surprised if she has no answer to your question. And if she doesn’t - don’t waste your time talking to her any further. Find someone who knows less about TESTS and more about KIDS. Just my two cents worth!

Steve,

We have parent-teacher conferences (this conference is either requested by teacher or parent if there are concerns, my son’s teacher requested) next Thursday evening. I don’t know if other staff (resource room teacher and speech/language therapist) will be there. I am assuming that this is just a parent-teacher conference and not an IEP, since the not that came home was parent-teacher conference note. I am planning on bringing papers that my son’s homeroom teacher and science teacher have written on indicating amount of time it took my son to complete the assignment or not complete it; a list of questions and suggestions. Any advice would be great. My husband is also attending. Any advice for him would be great too.

Thanks, We-five

If you are in doubt you may want to ask who will be there. You should be able to request other staff to be there if you feel it would be helpful. For example, if it would be helpful to have somebody like the school social worker who SHOULD be fairly knowledgeable and impartial then you should be able to request their presence and/or input. I recently requested a parent/teacher conference for my daughter and the school turned it into a huge 504 review type thing. They did tell me ahead of time they were doing it so I brought one of my daughter’s doctors with us. When they found out our doctor was coming they brought in the district supervisor for 504 plans. It really ended up benefiting my daughter in that there was no questioning what could and couldn’t be done.

I think you are right in bringing work samples and written questions. I do that as well as take notes in the meeting. It seems that if I don’t take notes I won’t remember everything that was said!

Good luck! Let us know how it goes!

JenM,

How did you get your daughter’s doctor to attend a meeting? I currently don’t trust any professional from my son’s school, since I saw a document that stated that I requested a meeting last year (I didn’t request one). I am not sure if the school is making things up to make it look like they were helping all along or what. At this point, I don’t want to focus on it. It will only make me frustrated and won’t help my son.

We-five

I think you are on the right track. I would just make sure not to get side tracked into conversations about diagnosis and keep the focus on what actions need to be taken. Keep the responsibility on the school to provide the appropriate education for your child, and don’t accept any excuses. Be friendly but keep the conversation always on what are we going to DO, not what is wrong with my kid. It’s all about how to modify the environment so that your son will be more successful. Anything that doesn’t help toward that goal should be disregarded.

I just asked the doctors if they could attend and the school was able to set up the meeting around their schedules. The one doctor could not make it because she had the flu but the psychologist was there. Generally speaking our meeting was very much about how to help my child but then again nobody is questioning her adhd diagnoses. The only discussion regarding diagnoses was to let the school know that between this year and last my daughter has also been diagnosed with anxiety disorder. I agree with everybody here that a diagnoses is important only to the extent that it allows you to get the help you need. Different doctors do diagnose differently. We had a vision specialist tell us that our daughter was severely perceptually impaired. After being treated for adhd she was retested by the same doctor who found that she was no longer having the same difficulties. Of course, the vision specialist cannot diagnose adhd. Anyway, I found that the doctors charged the same as an office visit for attending the meetings. This meant I just had to pay my usual co-pay! Well worth the expense to make sure that the school does what it needs to do to help my daughter. I also have come to distrust the schools which is sad because I am also an employee of the district!

Thanks for your good advice. I hope I remember everything. I am just so drained. This next week is going to go so slow. I need to stay focused.

We-five

I’ve been there and I know what you are saying. Most of us have at one time or another. After a year and a half of being constantly in that state I have come to appreciate how important it is that we take care of ourselves. It’s only been in the past month that I’ve finally started to relax. Trust me, we are still fighting and maybe always will be. The difference is that I’ve finally relaxed about it and figure that’s just the way it is. I understand now why all the books say parenting our children is more stressful. What I have been researching recently is the effects of constant stress on brain chemistry. Let me just say it makes a tremendous difference in our day to day functioning. With that said make sure you take time out for yourself. Exercise, take a walk, go out with friends, whatever it takes to give yourself a healthy break. Sometimes I find it’s actually good to NOT think about the school issues for a day or two and just enjoy your kid for who he/she is! You will be so much better to deal with what you need to with the schools!

Good luck and hang in there!

JenM,

You were right to suggest taking a break from thinking about things. My husband and I took the kids this weekend to see “Robots”. I don’t know what I enjoyed more the movie or watching the kids laugh. The kids laugh! The kids and I played a board game tonight. It was just pure fun. I probably will start worrying Wednesday evening (conference is Thursday). Not going to think anymore.

We-five

we-five, I’m so glad to hear you did that! I know it helps me to refocus on my kid as my kid but not her issues. I don’t know if that makes sense or not. I just know that if I am not careful I can end up very stressed out and more worried than what is helpful to anybody! Sometimes a day at the beach (in any season) works miracles for me!

A day at the beach in any season — hmm, they’re still ice-fishing on the river up here … just dress properly for it!

While I essentially agree with all the good advice you’ve recieved , I do think sometimes its important to keep digging - not to get the right label just to have a label, but because it sometimes matters when choosing an appropriate solution.

For example, say you have a child like mine who is inattentive. Could be anxiety, ADD, sensory overload. And a very smart psychologist told us that the inattention you see with an NLD (nonverbal learning disabled) child doesn’t respond to medication like the inattention you may see in an ADD child. And you don’t want to put an anxious child on stimulants. So in this case trying to get to the root cause may determine what you try first.

On the other hand, my son who looks very NLD on paper couldn’t read. Never mind that NLD kids are supposed to be great decoders. And as it turns out the tried and true remediation techniques for dyslexia (Orton Gillingham) work for him .

I do agree with your husband that there are few cross disciplinary professionals out there. Speech therapists diagnose what they know, as do OT’s, psychologists and optometrists. And they aren’t wrong, but they usually aren’t looking at the whole child. I have met a few people in my travels who are very well read and can look outside their box, but for the most part I’ve had to take that role. As the parents we have to decide that OG teaching isn’t enough and maybe vision therapy is also appropriate.

I’ve also had the experience that as we remediate one issue it clarifies what is going on in other areas.

You are doing the right things and need to just keep hanging in there.

KarenN,

I believe you are right about not giving up. I am not. I have made an appointment with a neurologist (appointment not until May) and have talked to an audiologist. The audiologist wanted to wait and review testing that is currently being done by the school’s speech and language therapist before we make an appointment with her. I am concerned about the adhd medication. I notice a small change at home, but I get the impression from incomplete assignments and teacher notes that it is not made a difference at school. I realize that these are two totally different environments with different expectations.

I did find out today that the parent-teacher conference will be 20-25 minutes and the school’s resource room teacher (not sure what her sp. ed. degree is in) will be there. That concerns me. I need to focus on some of the advice my sister gave me. “Really listen, breath and then respond in one or two sentences”. I want my words to be heard as valid words and not “blah blah”.

I need to focus on specific behavior in the classroom so that I can better understand what the issues or concerns are that the teacher has. I know that my son’s desk was moved to the front of the class, but I don’t know if it has helped in any way. I have asked him if he has any suggestions about how his teacher and I can help make school easier. I just need to get him to be specific without over welming him. It took me until college to figure out how I learn best.

Thursday evening is coming and I just need to breath and think. Thanks for all the advice.

I think that at the end of the day, no one knows really what the real issue(s) are.

We-five

I just wanted to say that over time you do learn what the issues are. You may have to be the case manager for your child. I know I am. He just turned 12 and I don’t have much trouble sorting things out any more. But it has taken years of testing, work with him, and therapy. I have a younger son who is 8 who I am still figuring out. Some of his behavior is textbook ADHD. He has always been active, impulsive, and hard to deal with. I have taken him to the therapist who has worked with my older son and she thinks he is very bright and LD. His teacher says he doesn’t sit still, gets up and down, is not engaged in class, and is impulsive but almost always knows the answer if she asks.

Just hang in there, take it one step at a time, and remember you don’t have to figure it all out in one conference. Some kids are very complicated and it can take years to separate out what is what. Karen’s example of anxiety versus ADD is a perfect illustration and in my older son’s case it has been APD verus ADD.

I would def. take him to a neurologist concerning asbergers. A neurologist ruled that out for us. OTOH, a firm diagnosis would be helpful in knowing what to do.

Beth

As a public school teacher, (MEd in LD) coursework in ASDs and a RN, I have worked with many children who have either accurate or innaccurate labels. A few with no labels, such as an 8 year old girl with UNDIAGNOSED Down’s Syndrome (all the classic signs!), a 7 year old boy with Autism (again, classic signs, but undiagnosed until age 9!), several who I suspect have Fragile X Syndrome, but have not been tested.

I agree that the interventions we put in place are more important than the diagnosis, however the diagnosis is important too. For one thing, a label (right or wrong) may add “legitimacy” to the issue, therefore increasing understanding and willingness to accomodate the sensory, emotional, behavioral, and developmental differences in the child.

Often, a label will help parents of the child’s peers to be more sensitive and understanding. Knowledge of ‘typical’ differences (related to the label), such as difficulty forming positive relationships, may be helped a bit.
And then there are the associated disorders, such as cardiac value disfunction with Fragile X Syndrome, and cardiac or blood disorders in Down Syndrome.

That’s my 2 cents.