I got the go ahead from dh to pursue a neuro-psych eval for ds9

[Soror]

Due to the winter storm we have to wait until the 19th now!

[SandyKC]

Sorry I've been gone.. Mom had surgery and will again tomorrow.   I'm catching up on reading threads and wanted to come back and see the results.. See it will be another week before you get them!

 

I thought I'd post and add our Neuropsych is very "focused" during the testing phase and not at all chatty.  He doesn't give a list either because it changes with each child as the testing progresses.  It would be extra work to provide a list at each testing session, so I guess I view her response as bluntly honest, business-efficient and not necessarily indicative of anything other than the fact that they don't do that. 

That said, She may be very wrapped up in the testing and have a lot on her mind as she figures out what the next step is and may not want to chat because she might lose what she's thinking.  I know I can't process more than one thing at a time and I hate it when I'm writing and someone asks me something because I'm GOING to forget what I have in my head unless I'm really SHORT.  So, I tend to be very short and it isn't anything personal to whoever is interrupting me, but rather a self-survival mechanism to not AGAIN forget what I was thinking!

 

Try not to worry.. Our Neuropsych is probably the least personable of the three people we tried, but he is BY FAR the most knowledgeable and most thorough. 

[Soror]

Thanks for your thoughts Sandy, I hope our experience is the same, hopefully we'll see next week at our results session.

[Soror]

Well, we had our feedback today, no learning disabilities, on the severe end of ADHD, fairly significant working memory issues. IQ wise he was high average but ranged from 91% (verbal comprehension- information) down to 5%(working memory- digit spans). Educationally I was well-pleased w/ his results. He did exceptionally well in math, about at the 90% but on the fluency section he was a fair amount lower. He was average w/ his writing but there were 2 different tests one he scored 20% and the other 90%. Anything that required attention to detail and a lot of working memory he did not do well on at all. On the timed tests checking speed and accuracy like the math fluency and spelling he didn't do good on, no surprise as anything timed stresses him out as testing shows he cannot make quick decisions and he sacrifices speed for accuracy. She said on the spelling he would make mistakes but then catch them, he frequently does this at home. They tested on hyperactivity, impulsivity, attention and timing (MOXO), he was he was extremely severe on everything but impulsivity, especially high so on hyperactivity. Impulsivity was good though, standard performance- silver linings and all that. 

 

He totally rocked it on story recall, 95%. I've realized that he does awesome w/ story formats, MCT and McHenry's has been great for him. I was shocked as to his general background info being in the 90+% because thus far we've doen almost entirely interest led on his own for content. The areas he did poorly on she said was related to the inattention and poor working memory. 

 

I'm a bit surprised that dyslexia and any physical writing issues were ruled out, although that is good. I've wondered how he compared to others but to see how severely he scored on inattention made me feel better as it evidently not just me! I was happy that he did so well on the education aspects, he scored as to what is expected for his IQ except Math in which he did better than expected. 

 

Her recommendations were:

- seeing a psch for medication for ADHD

- CogMed training for working memory

- evaluation for speech therapy

- work on exercises to improve letter tracking, word recognition and word discrimination- Sentence and Letter Tracking by Academic Therapy Publications

- Step up to Writing for detailed step by step instructions for writing

[FairProspects]

Doesn't it feel great to have answers? Even if it wasn't what you were expecting, at least you have a plan to move forward now. Were you thinking that ADHD might be in the mix?

[Soror]

I suspected some ADHD but I was shocked as to the severity. I've had people make comments itr  since he was little but I'm just so used to him that I guess I didn't realize how different it is and with him being my first as well it is hard to compare. She did say he would be a late bloomer and I should except him to be about 30% behind in his ability to pay attention, so we should expect about the same level of independence as a 6 yo now.  I felt good about that b/c that has been my experience, I have to be right there or he cannot focus. 

[FairProspects]

Interesting! We got that comment too, but no ADD/ADHD just a "diffuse pattern of attention". It is fascinating how kids who present with such similar issues can have such different things going on. It might help explain why the CAP writing is working for you though. I was wondering how in the heck a kid with language issues like dyslexia/dysgraphia/word retrieval, etc. could be successful with it since the sample seemed so contrary to how we were told to teach LA to ds.

[OneStepAtATime]

So glad you finally have some answers, and hopefully a successful path to follow!  

 

I don't know a lot about ADHD, by the way, so take this with a grain of salt, but I do have two close friends in other states who's children has that diagnosis.  One was able to help them without using meds, but the second one with a more severe situation decided to go ahead and try medication.  The first medication they tried did not work.  In fact, it caused severe weight loss among other health issues. The second one worked really, really well, and they were able to get it in patch form which she said  was much easier to use and regulate.  The medication, as I understand it, leaches out of the patch and into the body slowly throughout the day, then you can remove the patch about an hour or so from when the medication is no longer needed.  They had her take her patch off on the way home from school so there would be enough in her system to get through homework then still have time to play and get the wigglies out as the meds left her system, and finally be able to sleep by bedtime.  My friend's doctor said that all kids are different and was very willing to try different ones as long as they gave each med some time to work.

[Soror]

It is crazy b/c it is what I expected but then not. To have it all lumped into adhd is a surprise. I'm surprised that writing shows up fine. I had noticed a big leap in the last year though and I have struggled w/ figuring out how much to expect and what to increase w/out making it overwhelming. He did have some retrieval issues, due to memory but not as much as some.

 

We were previously opposed to meds but at this point I don't know. We are strongly considering it now. I thought before that I would only consider dietary interventions but implementing Feingold to the degree necessary and time necessary (ie this is not short term) I think I would be damaging to our relationship as parent/child. He already feels different enough w/ being gf. We eat pretty clean as it is but taking it to that level significantly impacts social life and interactions. I think he would highly resent it.  Also, seeing the great disparity between his scores makes me feel compelled to help him to figure out how to best even things out for him, meds or not.

[Soror]

There is a lot to process w/ it all. It does seem we are on track and although she recommended a writing program, that I will check out, but I'm not sure that it is necessary, he is scoring at his ability level and we've made tremendous strides  and he likes what he is doing. 

 

Anyway, there is a ton more but those were the highlights.

[FairProspects]

I have Step up to Writing and I think it is just meh. It seems hard to implement and overly complicated to me.

[Lots of boys]

I think ADHD can be so pervasive into all other aspects of their school work it is hard to tease everything out. It sounds like you got a lot of information that will take some time to digest. I made the decision to not think too much about it over the holidays and just wait until I get the written report before I really make any changes based on the eval.

 

It sounds like you have done a fantastic job getting him to where he is now, overall he is doing really well. My ds was just given an ADHD diagnosis too and I still am not sure how to proceed with that info (and all the other info we were given). I do know I am so glad to have gotten the information and I know eventually if I will better inform my teaching for him.

 

I would recommend taking a break for the holidays and letting it all sink in :)

[SandyKC]

I have Step up to Writing and I think it is just meh. It seems hard to implement and overly complicated to me.

 

I have to agree with this!! We had Step Up to Writing too and .. eh.. nothing I've recommended to anyone.  For step-by-step programs in writing, I MUCH prefer to recommend IEW (Institute for Excellence in Writing) or EIW (Essentials In Writing).

 

[SandyKC]

We didn't want to do meds for the longest time, but when my DS became an older teen he flat out told us he wanted to give it a try.  The very first day he said, "MOM! We should have done this a LONG time ago!"  The difference for him personally was dramatic enough that he wouldn't have it any other way now.  Because of all of the side effects and/or complications, he understands why we avoided it while he was little, but even so--I question at times whether it was the right decision or not.  In the end, it IS a difficult decision each parent has to make as best you can at this moment in time.  I can't say I regret not using meds through elementary or middle school, but I do wonder how things might have been different if we did.  DS is similarly very intelligent, but his ADHD gets in the way of his ability to demonstrate what he knows without the meds to help him stay focused on the task at hand.

 

I'm so glad you got some good answers and it's nothing as difficult to deal with as you might have imagined! Your doc's recommendations sound great... There are a variety of options for dealing with the memory/cognitive enhancement, so if CogMed doesn't end up suiting your needs, be sure to check out other possibilities.  No matter what you choose, as long as you're focusing on the training your DS needs, things will start going better over time.  Sounds like he's one smart guy and he'll probably surprise you with where he goes with his dynamo personality and smarts too! :-D

 

It is crazy b/c it is what I expected but then not. To have it all lumped into adhd is a surprise. I'm surprised that writing shows up fine. I had noticed a big leap in the last year though and I have struggled w/ figuring out how much to expect and what to increase w/out making it overwhelming. He did have some retrieval issues, due to memory but not as much as some.

 

We were previously opposed to meds but at this point I don't know. We are strongly considering it now. I thought before that I would only consider dietary interventions but implementing Feingold to the degree necessary and time necessary (ie this is not short term) I think I would be damaging to our relationship as parent/child. He already feels different enough w/ being gf. We eat pretty clean as it is but taking it to that level significantly impacts social life and interactions. I think he would highly resent it.  Also, seeing the great disparity between his scores makes me feel compelled to help him to figure out how to best even things out for him, meds or not.

 

[texasmama]

I think ADHD can be so pervasive into all other aspects of their school work it is hard to tease everything out. It sounds like you got a lot of information that will take some time to digest. I made the decision to not think too much about it over the holidays and just wait until I get the written report before I really make any changes based on the eval.

 

It sounds like you have done a fantastic job getting him to where he is now, overall he is doing really well. My ds was just given an ADHD diagnosis too and I still am not sure how to proceed with that info (and all the other info we were given). I do know I am so glad to have gotten the information and I know eventually if I will better inform my teaching for him.

 

I would recommend taking a break for the holidays and letting it all sink in :)

Like this so much I had to quote it!

 

I don't have kids with ADHD but have worked with many professionally.  Severe, untreated ADHD (IMO) is the equivalent of a learning disability because of the profound affect on working memory.

 

You are a good, thorough, caring mama, and you will puzzle this out.  I have full confidence of that.

[Soror]

Here's what I don't get she made specific recommendations about letter tracking and sentence tracking b/c it says he has trouble w/ good visual discrimination ie reversals, skips, left to right directionality, omissions and substitutions. Phonological memory was at a 2%,  those are all things to me that made me think dyslexia but evidently she attributes to working memory issues

 

Then there is the rec for the speech therapy eval.  To me the mistakes he makes are not speech though but perhaps I'm entirely ignorant here. On processing speed he was right at average but the coding subsection was 37%. 

 

Sandy thanks so much for the recs. I'll definitely be checking them out. I've been wondering what we could do to address the timing as that was on the MOXO test and he scored just as bad on timing as he did on attention. 

 

I guess I was ignorant on ADHD/ADD b/c I had no idea it could so profoundly affect memory. To see the scores off the charts on profoundly severe, is totally crazy to me. I've seen other kids that definitely seem more hyperactive. Am I delusional or do they have a whole other scale? I will say though that going gf was a profound difference as before it was not really manageable, so I wonder how it would be if we weren't on the diet. 

 

Dh and I were talking about meds and he was saying his main objections were that he thought people used them too much and w/out good reason and just to make their life easier. We could have likely went to the peds many years ago and got meds but we went through a thorough eval not even looking for a reason to med. And we are coping but I can see now looking at the scores and knowing what he struggles on now that if we find the right meds it might be a great help to him. 

 

I'm a bit bogled as to the fine motor skills. I know he was delayed here. I guess he was just a late bloomer. He has jumped in ability, so I guess this is normal now? I have been increasing his load here but I've not wanted to overload him. I guess he just needs more practice. 

 

On the spelling he didn't do as good as I expected but it is my understanding that he made many mistakes due to inattention and speed. He often does this at home, he spells the word wrong and then self corrects. I need to verify w/ her there as it seems that will only get better w/ working on the attention issues. He generally knows how to spell words though, naturally.

 

I was glad to see him do so well in Math. His scores help me to make sense of what I see teaching. He seems fairly bright and on some things he does awesomely well but there are other areas that he really struggles. 

 

I'm glad to here about the writing program she recommended. Dh thinks I should do it because we paid all this money for her recs. I have thought about IEW for the outline info but I think some aspects of the program would not fit him at all. 

 

Anyway, we are not making any decisions right now, it is kind of good it is the holidays b/c we will be busy and have time for everything to sink in.

 

I was glad to see Math skills and listening comprehension so high as that was my thoughts on his strengths. It is a bit daunting to think that it could be years b/f we have any independence due to the ADHD. 

 

[Soror]

Also, I'm sorry that my thoughts are so disorganized, there is just so much info and every time I reread it I think some more.  There are just so many different things and then trying to think of it all together. 

[wapiti]

- work on exercises to improve letter tracking, word recognition and word discrimination- Sentence and Letter Tracking by Academic Therapy Publications

 

hmm... this sounds like a possible vision thing - have you already ruled out vision issues?  just thinking out loud.

[Soror]

I went to a COVD dr a few years ago and she said he was fine. The NP said that she makes referrals to COVD dr's when needed as well and seemed to be well-versed in such issues and VT but that wasn't her rec. I wondered about that as well. I'm working on a list of q's for her though and that is on my list.

[Tiramisu]

It is crazy b/c it is what I expected but then not. To have it all lumped into adhd is a surprise. I'm surprised that writing shows up fine. I had noticed a big leap in the last year though and I have struggled w/ figuring out how much to expect and what to increase w/out making it overwhelming. He did have some retrieval issues, due to memory but not as much as some.

 

We were previously opposed to meds but at this point I don't know. We are strongly considering it now. I thought before that I would only consider dietary interventions but implementing Feingold to the degree necessary and time necessary (ie this is not short term) I think I would be damaging to our relationship as parent/child. He already feels different enough w/ being gf. We eat pretty clean as it is but taking it to that level significantly impacts social life and interactions. I think he would highly resent it.  Also, seeing the great disparity between his scores makes me feel compelled to help him to figure out how to best even things out for him, meds or not.

 

I'm glad you got your answers. :)

 

I felt we had huge writing issues at home but writing was her highest area of achievement and she scored well on writing on the SAT's. I could not have known that it was such a strength.

 

About the meds, I don't think it could hurt to try. You and he both may find them very helpful and your dh may be pleased with the effects, too. It seems like many people do regret not trying them sooner, as PP shared.

[Soror]

 

I don't have kids with ADHD but have worked with many professionally.  Severe, untreated ADHD (IMO) is the equivalent of a learning disability because of the profound affect on working memory.

 

 

I've been thinking over this post, thanks for this thought. The NP kept saying well he doesn't have any LDs but looking at his working memory and all the ways his inattention/hyperactivity affected his scores it sure seems that way to me. I asked her about letting him use his times table as an accomodation and she acted like I was just trying to baby him or something and that he could learn it. Well, it is not b/c he cannot learn it but when doing multi-step problems, as he does now, he cannot keep the numbers in his head.

 

I haven't cried yet. I'm thinking about it. My friend told me yesterday it was good news b/c he could just take a pill. hmph. Then there are all these stereotypes w/ ADHD and medication. I am not considering medication at all due to the hyperactivity. It is due to the effect on working memory and some of the processing speed issues which are evidently so pervasive.  I cannot accomodate him out of his lack of working memory. I know everyone thinks that well, he is at home, so no big deal you just let him stand while working, ya I do that, no big deal. That doesn't help him pay attention though, it doesn't help him remember. There is so much more to ADHD than the A and H part, seriously. I asked b/f about worst case scenario and not wanting to be surprised. I don't know how I could be so surprised by this diagnosis but I am b/c I just didn't know all the way it can affect kids. 

 

I don't want him on meds, certainly not for my sake. I'm a crunchy granola mom, w/ 4 unmedicated births the last 3 at home. We rarely go to the ped, I've worked hard on the diet and sourcing out good foods, even though in my rural community that has meant driving far distances and a lot of work. What a humbling experience. I want to do what is best for him though, my pride be damned.  I don't want him to think poorly of himself, he sees his struggles, he feels them.  What a blessing though he has in his persistence and generally good outlook.

 

I feel so proud though that academically it is where he should be or better. We've worked hard. He is so persistent and I've done all I could to help him succeed. 

[Tiramisu]

Everything you are feeling is very understandable. Remember many people with ADHD grow up to have normal lives. And they are more interesting and more fun. Not to make light of it. But it could be helpful for you to read some ADHD success stories.

 

Since you feel uncomfortable about meds, don't push it. Look into Cogmed. :)

 

:grouphug:  :grouphug:  :grouphug:

[Soror]

OH, I haven't looked into success stories, what a brilliant idea :)

 

I'm just working through my own thoughts, ignorance and misconceptions. 

 

I need to stay away from reading interent comments and talking to unsupportive people. I just read an article that had a comment along the lines of, "well, just let the kid climb some trees." Seriously. What poppycock. 

[OneStepAtATime]

OH, I haven't looked into success stories, what a brilliant idea :)

 

I'm just working through my own thoughts, ignorance and misconceptions. 

 

I need to stay away from reading interent comments and talking to unsupportive people. I just read an article that had a comment along the lines of, "well, just let the kid climb some trees." Seriously. What poppycock. 

Yes.  Ignore and get away from unsupportive people...

 

And good luck and best wishes!  Still trying to work through all of my thoughts, ignorance and misconceptions, too.   :)

[PeterPan]

nt 

 

[PeterPan]

nt

[OneStepAtATime]

I was at my son's karate class Christmas party last night and began a conversation with a woman that ended up lasting over 2 hours.  It was just one of those conversations that clicks.  Something she talked about was really fascinating to me and I thought might be of interest to you.  She spent a large part of her life having learning issues that stemmed from undiagnosed ADD.  I thought I would pass along her experience with starting medication since I have never had someone explain this in quite this way to me before.  This is not to say that medication is the way to go in your situation, but I thought of you and your child when she was talking with me.  

 

After evals, etc., a few years ago, this woman's psychiatrist asked her to read a book out loud.  She could do it, but after a few pages, she was really fighting to stay focused on the one task.  The psychiatrist asked her to then tell her moment to moment what she was thinking.  She insisted that would be impossible because she couldn't verbally keep up.   She did try, but it was difficult as more and more thoughts kept intruding simultaneously, all equally demanding of her attention no matter how small.  Finally, the psychiatrist asked her to take a really tiny, tiny dose of the med they were considering putting her on.  She told her that if she really was truly ADD then just this small dose would affect things in a fairly predictable and significant way.  She did not tell her what that would be.  She had her take the medication then wait 2 hours at the facility doing other things before returning to her office.  

 

While she was gone, a very frightening thing happened...her dozens of constantly demanding thoughts were lost and the few thoughts she still had seemed really, really slow.  She was terrified and started to cry.  When she returned to the office, the woman asked her how she felt and she told her how horrible and frightening it was and that she was certain this medication had broken her.  The psychiatrist asked her to read from the book again.  She read through an entire chapter, then realized that she had not been distracted at all while she was reading.  It was not a comfortable feeling to not have dozens of thoughts at once, but she was fascinated that reading was so much easier.  Then the psychiatrist asked her to verbalize her thoughts.  She was able to think of each thought without another thought intruding.  She was able to push aside thoughts that were not immediately important.   It was a whole new way of functioning.

 

That was several years ago.  She says it has changed her life....  I thought I would share this just in case it helped at all...

[MomatHWTK]

I watched Dr. Rostain's lectures on Coursera and learned a great deal about what ADHD is and isn't.  The course is not currently open but here are some of the recommendations from his school:

http://www.med.upenn.edu/add/websites.html

[PeterPan]

nt

 

[OneStepAtATime]

I'm not arguing that meds don't help or shouldn't be used on (honest), but this is in the vein of something said to people that, to my understanding isn't accurate, that idea that if you try the meds and they make a difference you needed them or are ADHD.  There is no such thing as a ritalin deficiency.  If a NT person takes a stimulant, they also get a boost. It's why there's a market reselling them on college campuses, etc.  

I don't think I'm explaining things very well.  Sorry.  The psychiatrist wasn't saying that only ADD patients (don't know what she would say about ADHD patients since this woman was ADD not ADHD) would react in some way.  She was saying (after she took the meds) that a NT person would typically get wired on this medication (not Ritalin but I don't remember the name), but a person with ADD that could be treated with this med would have the reaction that she did.  Thoughts slower and more manageable, not tons of them all jumping around in her head at once.  If she had not had that slowing down and ability to focus then they would not give her that drug.  They would try another avenue for treatment, either something without drugs or perhaps a different drug.  She did not want to put her on meds if those meds weren't going to help her....  Does that make sense?  In this case, it really did help, and apparently a lot, but she was told it does not help everyone.  

[PeterPan]

nt

[MomatHWTK]

I tried not to comment on this matter, but it would be unfair for me not to mention that the folks in this household who take medication have legitimate dianosis from physicians with whom they have an ongoing theraputic relationship of which the medication is one part and it does make a positive difference in our lives.  I honestly regret that I didn't seek help for DS much sooner.

 

 

I started taking medication last year, it makes a HUGE difference in my life.  It's not a stimulant medication so it's not a "stimulant" difference, it's an ADHD being treated difference.  I can tell within an hour if my DS has not yet taken his dose (he does morning and evening).  There is a difference between increased performance and actually being able to concentrate and organize thoughts.  But I understand that there is such bad press about "over prescription" and "abuse" of ADHD medications that anyone accepting the prescription is always going to be subject to negative opinions on the matter. 

 

The person who said the medication made a difference also had a consultation in which she described non-NT thought patterns.  She didn't borrow someone's medication to play with or just convince her GP to give her a prescription.  The therapist didn't give her the medication as a one and only test to determine ADHD.  As the lecture series I referenced indicated, there is no test to determine ADHD.  There are symptoms, analysis and responsiveness to treatment.  It seems to me that the person was being evaluated using those tools. 

 

Everyone sees what they want to see.  But in the end, it is the parent and ultimately the child who have to determine what they can live with as far as medication or not. 

 

 

ETA:  I'm sorry but I can't take any author who refers to medicines used to treat depression as "happy-pills" seriously. 

 

[geodob]

It might be helpful to understand a bit about attention?

The brain maintains multiple points of attention at the same time.

But in order to do this, it needs to manage them.

Where it needs to prioritize them, and allocate and maintain a level of attention to each one.

As well as inhibit intrusions that aren't relevant.

 

As an analogy, these different points of attention, could be thought of as instruments/sections in an orchestra.

Which need to be conducted.

So that with attention difficulties, it could be understand as a difficulty with conducting the orchestra of attention.

 

Though their ongoing research into using computer games, to further develop attention conducting skills.

The games basically involves carrying out a task on the screen.

But on the screen their is an element that can suddenly become active, which will effect our primary task.

So that while we keep our primary attention on the task.

We need to maintain a lower level of attention on this other 'element', for any movement.

So that one can react instantly to it.

 

This then expands to 2 elements, that require maintaining lower level attention.

Which can grow to 3 or 4 elements.

But another side of this, are some elements that are continually moving or flashing, but will have no effect on our task.

Where the flashing/ moving is drawing our attention.

But with these, they don't require any attention at all.

So attention to these needs to be inhibited.

 

But basically it involves using computer games to practice maintaining and prioritizing multiple points of attention, and inhibiting 'distractors'.

Where the research so far, has shown that as attentional control develops when playing the games.

That this carries over into general attentional control.

[OneStepAtATime]

 This idea though that you can identify adhd by how they respond to the meds is pretty common and is not currently considered correct.  Notice in the article the NT user does not feel wired.  He literally functions better, has clearer thoughts, etc.  

 

 

I really appreciate that you are trying to give the OP all the info you have available.  I am not certain I am understanding, though, what you are trying to say in relationship to my previous posts.  Are you saying you think the psychiatrist was being irresponsible?  Or she shouldn't have done that 2 hour comparison test before putting her on meds?  Or...?

 

If this woman had walked into the doctor's office and said "Doc, I can't concentrate, I think I have ADD."  and she had then given the woman meds, and asked if she could concentrate better, then if the woman had said "Yes, I can concentrate better" and the doctor had responded with "By golly you really do have ADD.  Let's write you a prescription."   I would agree that it was a junk diagnosis not based on any facts or observations.

 

However, that is not what happened, as MomatHWTK and geodob previously mentioned.  Again, maybe I am not making myself clear.  I talked with this woman for a long time and you are only getting the highlights.  I am sorry if I am not giving a clearer picture.  Her doctor put her through a battery of tests over weeks before she even considered meds or a diagnosis of ADD.  She found that there were several indicators of none NT thought processes throughout those tests.  She then had her do an apples to apples comparison of her brain as it normally functioned (which really didn't sound terribly NT to me) with how her brain functioned on the meds (which did sound a lot closer to NT to me).  I grant that I did not spend a lot of time describing how this woman described her normal thought processes without the meds and with the meds.  I didn't want the post to drag on too long.  The difference was extremely significant, though, to the point where she was frightened by the difference.  She had never had "slow" thoughts before, where she could focus on one thought, while being aware of other thoughts but able to push them to the side.

 

I appreciate that you do not want the OP to think that the only thing they have to do is give their child meds and see if performance increases to determine a diagnosis of ADD or ADHD.  I certainly didn't want her coming away with that impression either so if that was what my post seemed to be saying, I apologize.  I guess I should have emphasized even more that the doctor put her through a considerable number of tests before they even attempted a diagnosis of ADD and tried meds (And for what it is worth, that is not why she was there, she originally went in to see the psychiatrist for another issue and some of her results weren't making sense so they pursued other avenues to find out what else might be going on.)  

 

I also know that a lot of people now think that medicating for ADD/ADHD is  wrong.  I guess I kind of felt that way, too, honestly, because I have a friend with a child that has this diagnosis and functions without meds.  I also have a friend whose child uses meds, but I guess I always secretly wondered if they really needed them or if it was a junk diagnosis.  After talking with this woman and listening to her describe in detail how her thought processes normally work, I changed my mind.  Do I think every ADD/ADHD diagnosis is accurate?  No, I seriously doubt it.  Do I think all people who have this diagnosis need meds?  No, people have shown that not everyone does.  

 

However, at least in this instance (and in MomatHWTK's instance) medication made a significant, positive impact in the ability to function, to organize and structure thoughts, to be able to manage thought processes.  For the first time in her life this woman found every task is manageable without extreme effort to focus and get through her day.  She is very, very grateful.   I thought I should share her experience with the OP, just in case any of it had relevance for her, not because I think everyone who can concentrate better on speed is ADD or that she should rush out and test whether her child is ADD/ADHD by taking meds.  I hope this post makes sense and clarifies my previous posts.  Sorry for any confusion or false impressions....

[Soror]

UGH, I only have a minute to respond.

 

But wanted to say a few things. I'm well aware that there has been a thought that if there is a response to ADHD meds then that means there is cause for diagnosis. I've also read extensively that (most) everyone will have a positive response to the meds. I'm not ignorant about the side against meds. The abuse and overprescription of meds has no bearing on the real need and benefit of them for those who are adhd though. 

 

We are not certainly decided for or against meds for ds, but have opened ourselves up to the possibility that they could be helpful and needed. We are not trying to fix our son, we're trying to help him. We are looking into various treatments but we're going to go for those things that are most likely to work and scientifically proven. For me the most pressing issue is addressing the working memory as that seems to cause the most difficulties. Although not 100% decided  we are pretty darn certain we will be doing CogMed, the only con I've seen so far is the cost and I don't care if we have the money and it can likely help then it seems more than worth the investment to me.

 

As to the inattention and hyperactivity, well my thought has been that while they make things harder we can accommodate for them. However, this isn't just about what I think. I think we need to have that discussion w/ ds as well. I know he gets frustrated w/ himself often at his inability to keep focus. If there is something we can do to make life easier for him then I think I would be remiss to dismiss it offhand. I'm also thinking about the diet again. I looked into interactive metronome and have seen that there is a provider 1.5 hrs away. 

 

I'm actually pretty pleased w/ our curriculum for the most part. Ds is actually not strongly VSL his best scores were for listening comprehension, when I was reading the Eides' Dyslexic Advantage he most closely fit into the Narrative category. He loves hearing stories and his retention and understanding is excellent, which is why things like MCT and McHenry's are so great for him. I had recently tweaked some things around here after realizing we were not doing some things optimally for him.  I'm not exactly happy w/ Math right now but when looking around I've not found anything that I've thought would be better for him.  

[Tiramisu]

:grouphug:  :grouphug:  :grouphug:

 

Just more hugs as you think through these things.

 

I think it's good that you are clued into his frustration level. I agree with OhE that the messages we give them is vitally important, but there is also the reality that certain kids become very frustrated because of the issues themselves. I remember the great neurologist telling me that he thought a good part of dd feeling so bad was because of the CAPD. He said certain kids wouldn't care that they don't understand but that she does.

[OneStepAtATime]

What Tiramisu said...plus more. :grouphug:  :grouphug:  :grouphug:

 

And so glad that most of your curriculum seems to be working.  :thumbup:

[Soror]

His scores:

Working Memory- Overall- 21%

Subcategories ranging from 5%-35%

 

Processing Speed-Overall- 50%

Coding was only at 35% though

 

I cannot imagine how maddening it is to have your processing speed and memory lagging so far behind. I know there are others who have even more of a disparity. 

 

We haven't told ds yet but I believe that we will. We framed the visit as a way of finding out how his brain works. I think he will find it a relief that there is a reason for some of his difficulties. I've heard him make comments as of late especially that he is dumb and bad at somethings. He knows that he struggles, denying that is not helpful but I think we can frame it in a positive way for him, matter of factly.

 

Ds is actually not behind. I like knowing the 30% rule but I'm just going to play it by ear. I so wish I knew that when he was smaller, thankfully I've never been a big fan of extensive pre-k ed. According to the test he is on par or above his age mates and his achievement matched what is expected for his IQ, high average, with Math being higher than expected. As I said earlier I don't know what to think about writing, it certainly was a struggle when he was younger maybe that was just the 30% rule coming into play? I've read that ADHD kids can have difficulty w/ writing but I'm not seeing a reason. She just said he doesn't want to do it b/c it is boring. I don't know. I've been upping output but a lot of things we still do orally I don't see a reason to force written output just for the sake of it, he does very well w/ discussion. 

 

I've read some Freed and other similar books. I actually checked a few different ones on ADHD from the library this summer and read them as I was reading about VSL and such. I need to search past threads for more book recs. I did buy a book yesterday and it should be in this week but I cannot remember the title now. A lot of ADHD books seem to be aimed towards the VSL and that doesn't fit him the best. The testing just verified that, which is good I guess, my instincts were right there.  I find it interesting to read we will need to just repeatedly go over things. I've struggled w/ that in Math, finding the right amount of repetition is hard. 

 

I need to read more about working memory and coding and its effects. Behavior wise he is a pretty darn good kid, as I said he doesn't have issues w/ implusivity so that is good. Before we went GF behavior was a huge issue though. 

[MomatHWTK]

Re: Writing  With ADHD any repetitive mundane task is absolute torture.  It doesn't always manifest in the ADHD mind as "this is torture" (although my DS would use those words) but it manifests in behaviors that basically do anything to excuse  not doing the task, avoidance, irritability, etc. 

 

I also think handwriting in particular must involve processing in some way that other forms of communication do not.  I know my handwriting was always atrocious and DS hates to write. There is something about holding the symbols in word form in long term memory and moving them to the forebrain and then hand for translation into written form that is just difficult.  Writing a single letter is a different process altogether.  I would say it is because writing combines composition- choosing the word, spelling- choosing the letters, handwork- writing the letters, and coordination- writing the letters in the right place and right order.  It is physically challenging- taking motor control and mentally challenging.  One must do all of that without getting distracted after or during the formation of any letter or the whole spelling, word choice, etc. is lost. 

 

When I was handwriting I could never hold the thoughts that rushed through my head long enough to get them onto the paper. I would have to write one word reminders in the margin and often would lose whole thoughts anyway.  Before a big writing project I tend to rehearse and rewrite in my head  multiple times before actually putting pen to paper in order to better remember my thoughts. Now- when I type, not so much of a problem.  I finally in my 20's developed enough physical coordination to type (couldn't do it before) and now type around 80 wpm.  Usually I can "download" an entire paragraph or so into working or short term memory and then get it typed in before it is lost.  I don't have the processing speed issues like DS though- mine is just ADHD.  If someone interrupts me between the download and the typing I will lose the thought (and sometimes make very vile threats toward the person.)  :glare:

 

 What most people actually think ADHD looks like is just a tiny glimmer of what is going on inside the mind.  It's like seeing your computer screen flash and thinking "Oh, my computer screen has something wrong."  Well, yeah, you see the flash but the reality is there are all kinds of hardware and or software things going wrong on the inside that cause that flash. KWIM?   ADHD is like being an Air Traffic Controller at O'Hare and regularly having half your radar screen go dark or some loud commotion happen right behind you. Can you keep your eye on your planes?  :tongue_smilie:

 

ADHD itself can trigger frustration, self-loathing (why can't I do what everyone else can?), depression, etc.  I would say it is not identifying the brain as "defective" that causes the bad feelings.  The bad feelings are there- if you don't fit the mold I don't think it matters if you get a label or not.  My DS specifically mentions hating his condition now that he knows what it is, but he hated his feelings and behaviors before the condition had a name.  If anything he feels better when we can at least offer hope through therapy and treatment options. 

 

In the end, being different is HARD, being different during the hormonal teen years is REALLY HARD.  You do your best and don't blame yourself for the outcome because none of us can really control that. 

[PeterPan]

nt

[FairProspects]

The gap is our biggest problem too.

[Soror]

MomaHWTK- Thank you so much for sharing. It is so interesting reading about this from an adult's standpoint. I've often wondered about what is going on in his brain as he is always asking me these really great questions about such random things. I know when ds was 4 what finally prompted me to do testing on food was depression. He would go on and on about how he wanted to be a good boy. He just couldn't control himself. It was bad. Bad enough at 4 I cannot imagine when he is older and it is a high priority for me that we keep an eye on this.

 

Thank you as well for sharing about writing. I have started to have him type some but I need to have him work on this some more. I usually scribe for him. His ideation is great but if he has to write then it goes down considerably. I think writing will be a real strength for him once he is typing well enough. I'm hesitant to move to a super structured program at least entirely b/c he is so great w/ creativity and I don't want to squash that by trying to make him fit into some box. He does need help w/ organization though. I don't know WR1 is working great at any rate and I honestly believe I have a good handle on how he is doing and what he needs. 

 

Elizabeth- I find that very interesting about VSL and vision therapy. I'm certainly going to ask why she didn't make that rec. That part of the puzzle has never fit for me. I think we'll likely do CogMed first as we know that he needs that and I don't want to overload and do too many things at one time. Thank you for the info about the metronome. I'll have to do some searching on that. 

 

edited out scores

 

So, what do you do w/ that? I haven't held him back to wait for perfection as I knew he could understand more but how do I help him w/ his fluency? It seems that is just due to the inattention and lack of working memory. I don't know if drilling will help here. He makes as many mistakes w/ adding as he does w/ multiplying so it is not a matter of how well he knows it. 

 

 

 

 

[PeterPan]

nt

[PeterPan]

nt

[PeterPan]

nt

[PeterPan]

nt 

 

[Tiramisu]

I think it can be frustration, which may lead to a feeling of being defective, even if that message wasn't given to them from someone else. I'm coming from the perspective of our processing disorders, not ADHD, so it might not apply to everyone else. Here are some examples outside of academics. My dd loves movies and wants to go to the movies with her friends, but then may have to deal with feeling lousy because her sensory system gets overloaded, so that she'll have to escape to the bathroom and miss things. She likes to be with her friends at parties, but may not be able to hear them because of the competing noise. Also, my kids with the clothing sensitivities see things that they like and would want to wear but can't because those things drive them crazy. They have expressed how frustrated they are with this. I'm not picky and content if they're dressed so we can go out the door, but they wish it could be different.

 

[FairProspects]

Definitely that. ^^ Ds gets upset at himself that he can't go to flashlight tag night at church but every year it has sent his senses reeling and he has had to remove himself. He wishes it were different and he wasn't so sensitive.

[MomatHWTK]

DS is the oldest of 4, so the teaching has always been tailored to his needs and isn't an area where he feels he fails.  He is however, very aware that none of his siblings have a meltdown if they have to open a new container of soy milk.  He notices that other kids at church don't freak out if they get an answer wrong on a Bible game...  I kept him unaware for as long as possible.  He has Aspergers too so perhaps that is part of the issue.  The issue of degrees is probably important as well.

 

I always liked who I was, but I also always wished other people got me and wanted that inability to connect to change.  I still have a very hard time slowing down my thoughts well enough to make positive casual conversation.  I'm one of those folks who brings her knitting to church too. ;)

 

 

OhE I know you have written that you aren't anti-medication, but then everything else you write seems very anti-medication.  Perhaps you aren't being honest with yourself on that front?  A child who is happy and able to perform well in academics and life would not be a candidate for medication, so asking your child if she wanted to take medication is a little disingenuous.  Your latest post implies that we as teachers are making our children miserable to the point of self-loathing due to our cirriculum choices. I hope that was not your intent.  But you seem pretty insistent that if we just use the same therapy you chose and do all the things you did we will have stellar medication free results.  That seems a bit unfair.  Neurological conditions are very individual and the treatments thus must be very individualized. FTR: I was not the one who introduced the term "defective" I used it in response to a specific post.   

 

My child takes medication because he asked to get treatment.  He wanted to be happy and have better self-control like the other children he sees around him.  I take medication because I needed help. I want to be able to clean my house and take care of my children like "normal" people do.  Now I suppose I could remove those roadblocks and soar without medication, but I wouldn't be flying the "good wife and mother" jet. Instead I would be flying the "I can crank out a well research 20 page document in 12 hours or less" jet.  I had that life, I don't want it anymore.  So I make a choice. 

 

It is great that what you are doing works for you and your child.  I assume you are a strong advocate of that system because it worked.  But don't oversell the product.  Not every program is going to work for every child and no one needs to be made to feel worse because they couldn't make it work. 

 

OP, work with a team that you trust.  Do your own research, ask questions, evaluate the level of knowledge in the answers you receive and then make your choices.  (When we went through this same process with allergists, my rule was if I knew more on the topic than the doctor then he/she was not the physician for us!)

 

[PeterPan]

nt