Blog post--an ADHD medication success story

[kbutton]

http://beautifulinhistime.com/2015/12/10/our-adhd-medication-success-story/

 

Thought this might interest some of you.

[maize]

Wow, thanks for sharing that!

[Guest]

It's good to hear positive stories, but I think what makes a story a success story is the long term results. The results of one month on meds doesn't necessarily make it a success story in the long run. Just saying!

 

http://www.nytimes.com/2012/01/29/opinion/sunday/childrens-add-drugs-dont-work-long-term.html?_r=0

[kbutton]

It's good to hear positive stories, but I think what makes a story a success story is the long term results. The results of one month on meds doesn't necessarily make it a success story in the long run. Just saying!

 

http://www.nytimes.com/2012/01/29/opinion/sunday/childrens-add-drugs-dont-work-long-term.html?_r=0

 

I am going to assume good motives on your part in trying to present another side, but this is really an editorial kind of article. The blog post is mom-to-mom, and isn't intended to be authoritative. It's means to encourage people to consider the benefits that could come from trying ADHD meds. Putting the two articles head-to-head is kind of an apples and oranges comparison. The author of the blog article is just speaking from her own experience. We all know not everyone finds meds to be a life-saver, but for many of us, they are life-changing. The author of the article you linked seems to want to undermine options for families dealing with ADHD while simultaneously saying the family is the reason the children have ADHD in the first place. Gee, that's great.

 

That is one of the most inflammatory articles I've read in quite some time about ADHD. First, he seems to think that parents and doctors are trying to cure ADHD, which I think is a load of hooey. I don't think the vast majority of people who educate themselves about and live with ADHD are looking for a cure. He talks about brain anomalies and different neurotransmitters, but then says that drugs won't cure that. Well, I wouldn't guess it would. A lot of things are managed rather than cured. If someone stops taking insulin, their blood sugar will rise. If someone stops taking Lipitor, their cholesterol goes up. If someone stops taking meds for depression, they sometimes get depressed again. If I eat crap, I get fatter. If I exercise, I put on muscle mass...

 

Then there are paragraphs like these little "gems" of horse puckey:

"Behavior problems in children have many possible sources. Among them are family stresses like domestic violence, lack of social support from friends or relatives, chaotic living situations, including frequent moves, and, especially, patterns of parental intrusiveness that involve stimulation for which the baby is not prepared. For example, a 6-month-old baby is playing, and the parent picks it up quickly from behind and plunges it in the bath. Or a 3-year-old is becoming frustrated in solving a problem, and a parent taunts or ridicules. Such practices excessively stimulate and also compromise the child’s developing capacity for self-regulation.

 

Putting children on drugs does nothing to change the conditions that derail their development in the first place. "

 

That's right up there with telling people that kids become autistic because their moms are frigid. I mean, really, my kid has ADHD because I overstimulated him? I worked my rear end off trying to keep him from being overstimulated. I became an expert at knowing when my child was overstimulated, understimulated, etc. I planned my life around trying to keep the child from perpetual meltdowns, which was a fruitless effort if there ever was one. This is the child that absolutely refused to eat when he was "alert and ready," but thirty seconds later was a total mess because you hadn't already fed him--an inconsolable, flipped out, impossible to sooth, soggy mess. The lactation consultant called him the most disorganized baby she'd ever seen! The bath example? I HATED bathing my baby because it worked him up so much that he wouldn't sleep, even when he enjoyed it. I can't say that all parenting is equal, but parents do not cause ADHD, except for the likely genetic component.  

 

I don't know if your kids have ADHD in addition to their ASD traits, but this article bears no resemblance to my reality in any way. I didn't make him have ADHD, and I am not trying to cure it. Meds keep us all moving forward, and when he doesn't have them...he still has ADHD. Surprise. Meds are a tool, and that is how we use them.

[Guest]

Yes, the intentions were good and no, my boys do not have ADHD. I think you may have misread certain parts of the article though! The point for posting it was for others to consider the long term effects of meds as well. I am not trying to imply anything about you or anyone else, and neither is the professor that wrote the article. Many things have to be weighed before making such decisions as to medicate a young child. I was just trying to show that there are many varying opinions and studies on the matter. It was just an FYI for those that wish to read it.

[Lecka]

I liked the blog post, kbutton.

 

Thanks for sharing :)

[maize]

Yes, the intentions were good and no, my boys do not have ADHD. I think you may have misread certain parts of the article though! The point for posting it was for others to consider the long term effects of meds as well. I am not trying to imply anything about you or anyone else, and neither is the professor that wrote the article. Many things have to be weighed before making such decisions as to medicate a young child. I was just trying to show that there are many varying opinions and studies on the matter. It was just an FYI for those that wish to read it.

I read the article with interest and appreciate you posting it. In the same vein of exploring options, opinions and research, here is an interesting response to that article:

 

 

http://psychcentral.com/blog/archives/2012/02/06/ritalin-gone-right-children-medications-and-adhd/

[Guest]

nm

Edited February 11, 2016 by Guest

[Guest]

nm

Edited February 11, 2016 by Guest

[Heathermomster]

Kbutton, I really enjoyed that link, but wowser. I sometimes wish that WTM came with a "EEEW" button.

Edited January 2, 2016 by Heathermomster

[MomatHWTK]

As someone with actual experience, yes, the right medication can make all the difference.  We use non-stimulant medications, btw.  

[PeterPan]

I read the article with interest and appreciate you posting it. In the same vein of exploring options, opinions and research, here is an interesting response to that article:

 

 

http://psychcentral.com/blog/archives/2012/02/06/ritalin-gone-right-children-medications-and-adhd/

That was an excellent article!

 

I'll just point out that the *extreme* executive function and self-regulation problems Kbutton is describing are connected to the ASD.  The meds help and the diagnosis is ADHD + ASD, yes.  I'm just saying there is a RANGE, a spread in severity.  In fact, I read a study suggesting that extremely poor scores on the BRIEF (an EF survey common around here) were more strongly correlated with ASD diagnosis than pragmatics scores.  Or put another way, most people with *just* ADHD are *not* dealing with that extreme a situation.  And the stories I hear of ASD + ADHD are so extreme, I don't think most sane people who actually get what's going on in those extreme situations would begrudge the meds to those kids.  It's a matter of SAFETY, literal safety.  You get these milder, ADHD-only cases, and sure people can quibble.  This is not a homogenous group with a single best answer.

 

As for professors, they live so in their university worlds, I really wonder.  You know how the saying goes: PhD=Pile it Higher and Deeper.  ;)

[Guest]

nm

Edited February 11, 2016 by Guest

[Tiramisu]

That was an excellent article!

 

I'll just point out that the *extreme* executive function and self-regulation problems Kbutton is describing are connected to the ASD.  The meds help and the diagnosis is ADHD + ASD, yes.  I'm just saying there is a RANGE, a spread in severity.  In fact, I read a study suggesting that extremely poor scores on the BRIEF (an EF survey common around here) were more strongly correlated with ASD diagnosis than pragmatics scores.  Or put another way, most people with *just* ADHD are *not* dealing with that extreme a situation.  And the stories I hear of ASD + ADHD are so extreme, I don't think most sane people who actually get what's going on in those extreme situations would begrudge the meds to those kids.  It's a matter of SAFETY, literal safety.  You get these milder, ADHD-only cases, and sure people can quibble.  This is not a homogenous group with a single best answer.

 

As for professors, they live so in their university worlds, I really wonder.  You know how the saying goes: PhD=Pile it Higher and Deeper.   ;)

 

Right. Safety is the thing that you can't really appreciate unless you've been there. It's genuinely not a just let's-take-the-easy-road kind of thing in some cases.

 

And sometimes for the therapy to work as an alternative to medication, initially you need a med for that to be successful or even happen at all. We could physically not get one of my kids in the car for therapy for years. The specialists I've related this to have told me that this is rather common. If she hadn't come around through a change in her own perception of her difficulty, we might still be in the same spot.  

 

I know quite a few moms who made the decision with eyes wide open to the risks because the risk of not doing anything was greater, and that includes someone who does suspects her child suffered a growth issue. 

 

Two other good friends dealt with hospitalizations of their children in the last year. They both were in therapy but not on meds until after the crisis. ADHD and ASD is in both families, either confirmed or highly suspected. I spent a day with one of the kids over the holidays and what a wonderful change I saw. An undeniable blessing for child and the family.

 

It's definitely not homogenous.

 

I think some make the choice because the pressure in public schools is so great now, at least where I live. I had a teacher try to push us in that direction with my oldest, who, for the record, doesn't even have ADHD according to a neuropsych.

 

Then, my youngest dd has two friends who have asked their parents to be able to get counselling for depression and the parents have refused. This is not ADHD related, but it shows me there are people out there, who, for whatever reason, choose not to follow a therapy route. Both families mentioned money as the reason for not pursuing therapy. One of the families said their co-pay is too high. They have a six-figure priced car in their driveway. The other says her dd just wants to be in therapy because my dd is in therapy, so not worth spending the co-pay. Notice these people have insurance. These excuses been a little hard for me to deal with since we recently lost one dd's friend to suicide.

Edited January 2, 2016 by Tiramisu

[kbutton]

This is in response to the safety idea. I attended a lecture on 2e kids in general, and ADHD was discussed. I was shocked to learn that there is a very, very high correlation between untreated ADHD in adults and car accidents (I would think that is anecdotal vs. verifiable, but I guess not). That discussion also pointed out that Russell Barkley's brother died in a car accident that was probably ADHD related, and here is Barkley's own take on this: http://www.additudemag.com/adhd/article/9673.html.

[PeterPan]

I spent a number of emails back and forth with a fool who wrote a whole book on how ADHD was all made up, christians shouldn't use meds, christians shouldn't buy into an ADHD diagnosis, all behavior problems are sin problems, all behavior problems should be approached with Scripture and ONLY Scripture.  Then when we got into it, turned out the guy had NO clinical experience with ADHD and NO, as in NO, understanding of ASD AT ALL.  And when I pressed him, this dude is like oh, well sure because that's this total other thing, pity them, whatever, blah blah.  ADHD slides right into ASD in the range of expression and yet people are willing to write articles like there's no connection, like these are utterly separate things, and not acknowledge that there's a huge RANGE of severity of symptoms.  

 

I think I'm weary of articles that equate the the ADHD label of kids in school who wiggle and have teachers wanting them on meds with the kids with severe ADHD who are extremely and obviously ADHD even WITH meds and just want to imply it's all "ADHD"and homogenous.  I also get tired of practitioners that tell us we're HARMING our kids with ADHD if we choose not to give them stimulant medications.  I've been fed this line too.  What really disturbs me as a parent is when I research and find the large (or seemingly large, maybe just vocal) numbers of ADHD people who are trying to get OFF their meds, who felt their meds were addictive or otherwise left them in a state they didn't want to be in.  These same people talk about the meds being springboards for addictive behaviors.  This bothers me, because I can't just read medical articles and doctor spiels about how supposedly safe these meds are and then reconcile that with adults talking about abusing the meds and addiction and addiction mindsets.  And yet I also cannot say it's a wrong choice or an unwise or unethical choice to take a child who is in danger (danger of not learning, physical danger, whatever) and give them meds.  To me that makes sense.  But I don't think the meds are as innocuous as a low dose aspirin regimen either.   

[PeterPan]

This is in response to the safety idea. I attended a lecture on 2e kids in general, and ADHD was discussed. I was shocked to learn that there is a very, very high correlation between untreated ADHD in adults and car accidents (I would think that is anecdotal vs. verifiable, but I guess not). That discussion also pointed out that Russell Barkley's brother died in a car accident that was probably ADHD related, and here is Barkley's own take on this: http://www.additudemag.com/adhd/article/9673.html.

Absolutely!!  Someone on the boards here posted that stat a few years ago.  Something like 3X the number of accidents.  Think about it, you have low processing speed, coordination and timing deficits, anxiety, impulsivity.  It can be a real issue!  And I think if the person is not going to be on meds, there needs to be a lot of *honesty* about the challenges and how to avoid situations that are going to make it taxing.  My dd *does* drive, and she's actually a pretty good driver.  But she's religious about no distractions.  Phone in purse on the back set, no music, etc.  It takes a LOT of focus to drive.  But we had a lot of honest talks about these are your challenges, how will it show up in driving, what do you want to do to compensate...

[Heathermomster]

I must be living in a bubble because I have always understood that meds for ADHD alone work in conjunction with deliberate EF/organizational strategies.  

 

Back when DD was late Kindie and working with an OT, I had a major freak out about her ambidexterity and motor planning issues.  I came across a published paper that examined motor issues and mental illness.  I lost the link when my last laptop died.   :svengo: Anyhoo..The study correlated a higher incidence of mental illness with those with motor issues like DCD.  50% of people with diagnosed motor issues are also diagnosed with ADHD.  It stands to reason that some people with ADHD may be more likely to struggle with addiction and mental illness.  

 

Son takes non-stim meds for ADHD inattentive.  After having his DNA tested to ascertain his ability to metabolize about 6 meds, the ped psych recommend a non-stim med.  Mental illness does run in DH's family and the Dr. did not want to run the risk of triggering bi-polar.   The psych did mention that ADHD can actually cover up existing mental illness and that once the ADHD is under control, other issues rise to the front.  I don't know what to make of that.

 

Liz, it might be interesting to analyze the progression of meds and ADHD treatment.  Perhaps the adults that you read about online never had the opportunity to try a non-stim med?  

 

 

Edited January 3, 2016 by Heathermomster

[PeterPan]

That's an interesting point.  I think stim meds are still the more dominant type.  

 

The overlap between psychiatric labels and ASD/ADHD, that's a much more involved topic.  I have lots of data points in my mind, but I really don't think just taking ritalin is going, shizam, make somebody become bipolar.  Even bipolar is a kind of, not sure the right adjective here, diagnosis.  I have two family members diagnosed, and frankly the whole process is screwy.  My personal opinion is you have genes and you have exposures, and the one snaps the other.  And to me, if ritalin pushes someone over, so would have vaccines, crap food, potato chips, pesticides, everything else.  Severe stress, vitamin deficiencies.  

 

I just have a hard time reconciling how different the people are whom I know are diagnosed with it.  I think sometimes it's almost flippant, sort of the quick way of not acknowledging the depth of problems.  But there's interesting stuff too.  Like one person I know who snapped and got the label has a family history of these blackouts, which apparently are a form of brain seizure.  So they give the person a seizure med (Depakote) and say it's for the bipolar.  But meanwhile, you've got this family history going back GENERATIONS with these same blackouts and it *not* expressing as bipolar.  So to me, that's not bipolar.  Unstable, yes, bipolar, no.  Then you've got this strong connection between ASD and bipolar and volatility.  You've got an ASD org marketing a supplement, sort of a good for what ails you general supplement if you have ASD kind of thing, that has lithium in it.  So fine, then we finally admit there's a connection.  But since they don't have a flip flying CLUE what causes any of this and are STILL barbarically just looking at SYMPTOMS, then they don't really know why there's the overlap.

 

I haven't looked at stats, but I'm just saying I wouldn't be freaky about a nice happy ADHD kid turning bipolar on you.  Just me.  Cuz there are lots of nice happy ADHD kids who just aren't bipolar.  I don't really think we have to worry that our kids are secretly bipolar and that meds will bring it out.  If you've lived with it, it's not pretty and it's not mistakable.  But I'm just enough deep in the psychiatric community with my family that I'm utterly skeptical of the tidy way they divide and divvy out labels.  The problems exist, absolutely, but they just aren't tidy.  I mean, if it's all just genetics, then your labels should be your labels.  But what I've seen is these shifts.  

 

But I can say one thing definitively.  If you have a family history of problems, don't go doing something idiotic like getting under extreme stress and wracking your body to the end.  It won't end well.  Whatever propensities your body has are definitely going to come out at that point.

 

Wow, THAT was a rabbit trail, lol.  I think sometimes things are common here that aren't really common across the population.  See the stats (I haven't looked), but I'm guessing stimulant meds are still the norm.  In fact, I'll go one step further and say that as I've looked into them I can't figure out why I'd prefer a non-stimulant over a stimulant med.  They work better, work more quickly, and are the standard.  To me with some of these non-stimulant meds, they're so not this, not that, that at a certain point I can't figure out what they ARE, kwim?  They just seem, annecdotally, as I look around the web, not to have as a good a track record.  But are you saying you've seen stats and the tide has shifted?  I haven't looked.  It's certainly an interesting discussion to ponder.  But it's sort of like thyroid meds.  Among people who know, natural thyroid (Armour, whatever) is all the rage, but the populace is still largely using Synthroid due to marketing.  Just depends on who you hang with as to what normal is.

 

And no, frankly, I think most people get a scrip for meds from the ped and walk away thinking they got a cure, or at least a patch.  Getting EF help, an EF coach, etc. is NOT the norm.

Edited January 3, 2016 by OhElizabeth

[kbutton]

I think EF training is like potty training on steroids. It's not easy. I hate being that consistent, frankly. And that's not fancy EF training--that's just fairly typical, let's be consistent, parenting/partnering. Things like saying, "We do this task the same way every time so that it becomes something we do without thinking about it." kind of parenting. It's find to be consistent for me when I want to be, but it's hard to be consistent because i have to be or life falls apart. I don't like that.

 

I can totally buy that a lot of people don't understand or realize that EF training would be helpful or even possible because they wore out on level 1, be consistent like potty training parenting, lol! My parents generation was so much better about consistency, or at least i perceive them to be. I drove my own parents nuts always "improving" things around the house. I was always asking why they did something a certain way because my way would be more efficient (it usually was). But for them, it's about habits and routines. They just ooze habit, routine, etc. in a really natural and likeable way. I just really do not (and I have pretty good EF skills). 

[PeterPan]

EF work can also be therapeutic and done in spurts.  A lot of VT stuff, especially when it's bringing in metronome, pacing, working memory, etc., is tapping that EF portion of the brain.  I think that's why we see carry over to cleaner rooms, chores being done, etc. when kids do VT, because you're working on that portion of the brain.  In that sense ANYTHING you do specifically to target EF for 10-20 minutes a day can add up and be beneficial.

[Tiramisu]

I think the more recent psychs we consulted were pretty clear in saying that a stimulant or an antidepressant won't cause bipolar but it might cause it to become more obvious by causing a manic episode, for example. That was a different story from what I had heard in the past.

 

And I totally agree about potato chips and stress throwing people over the edge. Chocolate doesn't count, though. I've been eating mounds of chocolate since Xmas and I've been feeling very calm and content, unless I change into my pajamas in front of a mirror. That sort of spoils the joy. :)

[PeterPan]

Oh Misu, you always crack me up.   :lol:  :lol:  :lol:

[Tiramisu]

Oh Misu, you always crack me up.   :lol:  :lol:  :lol:

 

I'm being totally honest that before the chocolate gorging started, I had one or two of those days when I try to figure out how many hours it would take me to drive to Ohio. Like a face-to-face with you would solve all my problems. :)

[PeterPan]

Misu, Skype would work too, you know.  :D  Not that I'm some kind of oracle, but you could stick your hand in and see what happens...

 

 

 

 

 

Edited January 3, 2016 by OhElizabeth

[Heathermomster]

That's an interesting point.  I think stim meds are still the more dominant type.  

 

The overlap between psychiatric labels and ASD/ADHD, that's a much more involved topic.  I have lots of data points in my mind, but I really don't think just taking ritalin is going, shizam, make somebody become bipolar.  Even bipolar is a kind of, not sure the right adjective here, diagnosis.  I have two family members diagnosed, and frankly the whole process is screwy.  My personal opinion is you have genes and you have exposures, and the one snaps the other.  And to me, if ritalin pushes someone over, so would have vaccines, crap food, potato chips, pesticides, everything else.  Severe stress, vitamin deficiencies.  

 

I just have a hard time reconciling how different the people are whom I know are diagnosed with it.  I think sometimes it's almost flippant, sort of the quick way of not acknowledging the depth of problems.  But there's interesting stuff too.  Like one person I know who snapped and got the label has a family history of these blackouts, which apparently are a form of brain seizure.  So they give the person a seizure med (Depakote) and say it's for the bipolar.  But meanwhile, you've got this family history going back GENERATIONS with these same blackouts and it *not* expressing as bipolar.  So to me, that's not bipolar.  Unstable, yes, bipolar, no.  Then you've got this strong connection between ASD and bipolar and volatility.  You've got an ASD org marketing a supplement, sort of a good for what ails you general supplement if you have ASD kind of thing, that has lithium in it.  So fine, then we finally admit there's a connection.  But since they don't have a flip flying CLUE what causes any of this and are STILL barbarically just looking at SYMPTOMS, then they don't really know why there's the overlap.

 

I haven't looked at stats, but I'm just saying I wouldn't be freaky about a nice happy ADHD kid turning bipolar on you.  Just me.  Cuz there are lots of nice happy ADHD kids who just aren't bipolar.  I don't really think we have to worry that our kids are secretly bipolar and that meds will bring it out.  If you've lived with it, it's not pretty and it's not mistakable.  But I'm just enough deep in the psychiatric community with my family that I'm utterly skeptical of the tidy way they divide and divvy out labels.  The problems exist, absolutely, but they just aren't tidy.  I mean, if it's all just genetics, then your labels should be your labels.  But what I've seen is these shifts.  

 

But I can say one thing definitively.  If you have a family history of problems, don't go doing something idiotic like getting under extreme stress and wracking your body to the end.  It won't end well.  Whatever propensities your body has are definitely going to come out at that point.

 

Wow, THAT was a rabbit trail, lol.  I think sometimes things are common here that aren't really common across the population.  See the stats (I haven't looked), but I'm guessing stimulant meds are still the norm.  In fact, I'll go one step further and say that as I've looked into them I can't figure out why I'd prefer a non-stimulant over a stimulant med.  They work better, work more quickly, and are the standard.  To me with some of these non-stimulant meds, they're so not this, not that, that at a certain point I can't figure out what they ARE, kwim?  They just seem, annecdotally, as I look around the web, not to have as a good a track record.  But are you saying you've seen stats and the tide has shifted?  I haven't looked.  It's certainly an interesting discussion to ponder.  But it's sort of like thyroid meds.  Among people who know, natural thyroid (Armour, whatever) is all the rage, but the populace is still largely using Synthroid due to marketing.  Just depends on who you hang with as to what normal is.

 

And no, frankly, I think most people get a scrip for meds from the ped and walk away thinking they got a cure, or at least a patch.  Getting EF help, an EF coach, etc. is NOT the norm.

DH and I went out later last night and I missed all this good stuff.

 

MIL becomes extremely frustrated about the people around her saying they have bi-polar. I have seen it up close and it is not pretty, and that is why I freak out about my kids having it.

 

DS is primarily inattentive and his behaviors are nothing like what was described in the original link. I have read where low dose ritalin has been used to treat primarily inattentive. DS can drink tons of caffeinated drinks and then go to sleep, so I don't see how low dose ritalin would work.

 

You mentioned IM. When DS did that therapy, he scored the highest on the computer that the OT had ever seen in her office.  Son's only vision issues were related to developmental motor and that was covered with OT/PT. There are no other therapies that I know of other than working consistently on organization.  As Kbutton mentioned down thread, EF requires a ton of consistency. It is just hard and I am not that good.  It is hard to know when to dive in and help or let the teenager manage and watch them goof up.

Edited January 3, 2016 by Heathermomster

[Tiramisu]

You mentioned IM. When DS did that therapy, he scored the highest on the computer that the OT had ever seen in her office.  Son's only vision issues were related to developmental motor and that was covered with OT/VT. There are no other therapies that I know of other than working consistently on organization.  As Kbutton mentioned down thread, EF requires a ton of consistency. It is just hard and I am not that good.  It hard to know when to dive in and help or let the teenager manage and watch them goof up.

 

Hijacking here. AGAIN. Sorry. But this is very relevant for me.

 

About IM, dd scored in the severely deficient range in IM testing with the OT when it came to bilateral coordination and the attention test.

 

The np did a very similar computer-based attention test, and dd scored in the normal range. But she came out of the test crying, and she is NOT someone who cries easily. Rant and rave, yes. Cry, it's got to be bad. I know she put a lot of effort in.

 

Because of this she did not get an ADHD dx (but she got something else), but she seems VERY ADHD IRL and her EF is the pits. All check marks were in the most severe column. I haven't known what to think about this. The np had very specific ideas about why this happened.

 

We got authorization for OT and dd will be doing IM there, but she will also have time to do other stuff. I haven't shared dd's np testing results with the OT yest, but I will and also ask for specific help for EF. Any specific ideas on what I should ask for?

 

I've tried to be consistent but this is real life. The best thing is me standing and giving brief instructions one by one, but everything has to stop for me to be able to do that all the time and that won't happen. So I'm just focusing on one or two things at a time these days.

[Heathermomster]

I don't know who to use for ef therapy. It is a pain and I feel you.

 

DS did very well with IM. Bilateral coordination was addressed last winter with a pt. DS has never cried after any testing. That part about him has always been odd. He does get upset but not like other kids. He is really laid back and I think that is due to under arousal associated with inattention.

[Heathermomster]

Dp...sorry.

Edited January 3, 2016 by Heathermomster

[PeterPan]

DH and I went out later last night and I missed all this good stuff.

 

MIL becomes extremely frustrated about the people around her saying they have bi-polar. I have seen it up close and it is not pretty, and that is why I freak out about my kids having it.

 

DS is primarily inattentive and his behaviors are nothing like what was described in the original link. I have read where low dose ritalin has been used to treat primarily inattentive. DS can drink tons of caffeinated drinks and then go to sleep, so I don't see how low dose ritalin would work.

 

You mentioned IM. When DS did that therapy, he scored the highest on the computer that the OT had ever seen in her office.  Son's only vision issues were related to developmental motor and that was covered with OT/VT. There are no other therapies that I know of other than working consistently on organization.  As Kbutton mentioned down thread, EF requires a ton of consistency. It is just hard and I am not that good.  It hard to know when to dive in and help or let the teenager manage and watch them goof up.

I think what you're seeing there *is* the caffeine/stimulant flip.  It's why stimulant meds work.  Yes, when dd has caffeine, she becomes groggy, sleepy.  It's one reason I've been scared of the meds, because I figured we'd spend a ton of time trying to get it right, zonking her, etc.  I really don't know.  

 

EF is considered a portion of the brain, so the general theory is that any time you're working that portion of the brain you're going to see improvement.  I mean working it *therapeutically*, which means with intensity to get an effect.  So, for instance, if a VT doc has the dc working intensely for 10-15 min a day doing activities that just *happen* to include rhythm, working memory, etc, etc. (anything EF), then the parents will go WOW, look at how awesome VT is, my kid got VT and now he cleans his room and packs his backpack and...  And really it's the EF bump from targeting that part of the brain.  The VT doc, in that scenario, was trying to take vision skills and get them functional, which is why they would do vision (or visualization, a strong learning technique) with working memory, etc. etc.  So it's very common to get some lifestyle carryover with VT that wasn't really so much from the vision as that they were targeting that EF portion of the brain.

 

So yes, you can target EF therapeutically, absolutely.  The Linguisystems workbooks have TONS of exercises and things you can do for EF, all done in brief, intense spurts to be therapeutic.  I think your thing about supports and structure are good too.  They're just different aspects of a total approach.  The neurodevelopmentalists and some of the orgs that work in that vein really focus on things that can be done *therapeutically* to improve EF.  Absolutely those options are there.  Remember Storygirl looking at a school that offered a program like that?  This stuff is out there.  I'll try to find that Linguisystems stuff.  I got both workbooks and did some with dd.  Ds isn't even close to ready for them, mercy.  They were good though, partly just for cluing me in to all the areas affected by EF.  Once you get the jist, then you realize how to target it.  

 

Executive Function Materials - LinguiSystems

 

This link has the workbooks and also the EF Source book.  That latter book is a really good read.  Our SLP got it and I spent a couple hours going through it.  Took my approach to EF to a whole new level.  Most of your EF stuff focuses on how it affects behavior, school work, that kind of thing.  That Source book is targeted at SLPs, so it's just a whole different direction.  Blew my mind.

[maize]

He is really laid back and I think that is due to under arousal associated with inattention.

Well now this is an intriguing theory. I tend to be very laid back--as in, almost nothing bothers me. Kids screaming, messy house, whatever...

 

Never thought of it as under arousal, but that would fit. Huh.

Edited January 3, 2016 by maize

[PeterPan]

Hijacking here. AGAIN. Sorry. But this is very relevant for me.

 

About IM, dd scored in the severely deficient range in IM testing with the OT when it came to bilateral coordination and the attention test.

 

The np did a very similar computer-based attention test, and dd scored in the normal range. But she came out of the test crying, and she is NOT someone who cries easily. Rant and rave, yes. Cry, it's got to be bad. I know she put a lot of effort in.

 

Because of this she did not get an ADHD dx (but she got something else), but she seems VERY ADHD IRL and her EF is the pits. All check marks were in the most severe column. I haven't known what to think about this. The np had very specific ideas about why this happened.

 

We got authorization for OT and dd will be doing IM there, but she will also have time to do other stuff. I haven't shared dd's np testing results with the OT yest, but I will and also ask for specific help for EF. Any specific ideas on what I should ask for?

 

I've tried to be consistent but this is real life. The best thing is me standing and giving brief instructions one by one, but everything has to stop for me to be able to do that all the time and that won't happen. So I'm just focusing on one or two things at a time these days.

Ok, hopefully I'm going to think through this correctly, because I always get your children mixed up.  My ds did that same thing, doing one computer attention test and looking clearly inattentive and another where he distinctly did NOT.  The third psych we saw pointed out that when you add ASD to the mix, you get the added challenge that they might just really *like* something and perseverate or get stuck on it, kwim?  So maybe that 2nd test just really fascinated my ds, kwim?  I think when you have conflicting info like that, the np should have used their head.  But since the profession seems to be dominated by four-footed barn animals, it's no wonder he/she didn't.

 

So yes, assume she's ADHD, work with her like it's there, because probably the next psych WILL see it.  This whole thing is an unfolding process.  If it doesn't end up getting called ADHD later, the fact still remains that she's having severe EF problems.

 

You're asking what you can do for EF.  It's not really the OT's problem or their gig to fix.  There might be a stray OT here or there who knows how to help, but I'm just saying I wouldn't expect much.  But it sounds like you're having serious, serious EF problems.  Can you tell us more about them so we can help you?  Are you having issues with sequencing (knowing the steps to a task)?  Working memory (ability to hold multiple instructions)?  Even self-regulation is technically part of EF.  EF is a huge, wide umbrella!  Sometimes you'll find an OT trained in Zones of Regulation, and that is creating supports because of course self-regulation is EF.  

 

Honestly, the easiest way to tackle a lot of this is GAMES.  I kid you not.  With games you can shake it up and target the same skill multiple ways.  So you might work on following instructions and do it with a kinesthetic game (mother may I, Simon Says), then do it again a different way with playmobil toys or the Magnatab or a graph art coloring page.  And then you might do it even a third way with a game like A Fist Full of Coins.  So then you go ok, my goal is to work on following one step directions, and when she can do that we'll try two step directions.  And you do it 3 or 4 times a day using lots of ways, lots of modalities, lots of real life.  

 

Now, I've gone on this rabbit trail about what you can do, but I'll just toss this out (because I can't remember the labels of this dc we're talking) that our behaviorist is going to be bringing a LOT of those goals, goals for adaptive behavior, for language, you name it, into time that our providers work with us.  So these are lower-priced workers, more like $15 an hour instead of the $75-110 you pay for an SLP or whatever, and they'll spend several hours a day working on goals like that.  So there are more ways to get there, more options on who's doing the getting there.  When (Lord willing!) we get our scholarship changed, that will be the plan.  

 

In general, to get that therapeutic effect, you're trying to do something with intentionality and intensity for 5-15 minutes, several times a day.  It's that drip drip.  It's never like WOW I just solved the problems of the world with this marvelous EF exercise I read in a book...  It's more like oh we worked on it 3-4 times a day for a few minutes at a jaunt and over the course of a month we got some progress.  And you can blend that kind of intentional therapy work with some *supports* to make things happen.  We've talked about alarms, but really visual schedules are AMAZING for some kids.  If there are sequencing and working memory issues, maybe visual schedules would help.  Sometimes they don't even need them long, just long enough to get the whole picture in their mind of the steps.  Some of these kids are *very* visual, and a visual approach to communication and scheduling can help even where there's so much speech you don't think you need it.

Edited January 3, 2016 by OhElizabeth

[Tiramisu]

Ok, hopefully I'm going to think through this correctly, because I always get your children mixed up.  My ds did that same thing, doing one computer attention test and looking clearly inattentive and another where he distinctly did NOT.  The third psych we saw pointed out that when you add ASD to the mix, you get the added challenge that they might just really *like* something and perseverate or get stuck on it, kwim?  So maybe that 2nd test just really fascinated my ds, kwim?  I think when you have conflicting info like that, the np should have used their head.  But since the profession seems to be dominated by four-footed barn animals, it's no wonder he/she didn't.

 

So yes, assume she's ADHD, work with her like it's there, because probably the next psych WILL see it.  This whole thing is an unfolding process.  If it doesn't end up getting called ADHD later, the fact still remains that she's having severe EF problems.

 

You're asking what you can do for EF.  It's not really the OT's problem or their gig to fix.  There might be a stray OT here or there who knows how to help, but I'm just saying I wouldn't expect much.  But it sounds like you're having serious, serious EF problems.  Can you tell us more about them so we can help you?  Are you having issues with sequencing (knowing the steps to a task)?  Working memory (ability to hold multiple instructions)?  Even self-regulation is technically part of EF.  EF is a huge, wide umbrella!  Sometimes you'll find an OT trained in Zones of Regulation, and that is creating supports because of course self-regulation is EF.  

 

Honestly, the easiest way to tackle a lot of this is GAMES.  I kid you not.  With games you can shake it up and target the same skill multiple ways.  So you might work on following instructions and do it with a kinesthetic game (mother may I, Simon Says), then do it again a different way with playmobil toys or the Magnatab or a graph art coloring page.  And then you might do it even a third way with a game like A Fist Full of Coins.  So then you go ok, my goal is to work on following one step directions, and when she can do that we'll try two step directions.  And you do it 3 or 4 times a day using lots of ways, lots of modalities, lots of real life.  

 

Now, I've gone on this rabbit trail about what you can do, but I'll just toss this out (because I can't remember the labels of this dc we're talking) that our behaviorist is going to be bringing a LOT of those goals, goals for adaptive behavior, for language, you name it, into time that our providers work with us.  So these are lower-priced workers, more like $15 an hour instead of the $75-110 you pay for an SLP or whatever, and they'll spend several hours a day working on goals like that.  So there are more ways to get there, more options on who's doing the getting there.  When (Lord willing!) we get our scholarship changed, that will be the plan.  

 

In general, to get that therapeutic effect, you're trying to do something with intentionality and intensity for 5-15 minutes, several times a day.  It's that drip drip.  It's never like WOW I just solved the problems of the world with this marvelous EF exercise I read in a book...  It's more like oh we worked on it 3-4 times a day for a few minutes at a jaunt and over the course of a month we got some progress.  And you can blend that kind of intentional therapy work with some *supports* to make things happen.  We've talked about alarms, but really visual schedules are AMAZING for some kids.  If there are sequencing and working memory issues, maybe visual schedules would help.  Sometimes they don't even need them long, just long enough to get the whole picture in their mind of the steps.  Some of these kids are *very* visual, and a visual approach to communication and scheduling can help even where there's so much speech you don't think you need it.

 

Yes, this is my dd with the new dx. And the np had the EXACT explanation you did regarding the attention tests. ;)

 

She can't break things down to start and complete a task. Everything is that way. 

 

Her academics are good overall, but her visual processing is poor. I think that affects things in real life in a big way. Bad figure ground. Doesn't know that the shampoo has tipped over and is spilling out down the drain. Doesn't notice things all over the floor. She can do laundry but she can't clean up after herself, if say, she has a bowl of cereal and spills it as she's pouring it and splashes milk all over.  So I notice it, bring her back, and go through the whole process step by step, because if I just say clean it up, she doesn't seem to know how to start or how to finish. She thanks me and is visibly grateful when I take her through the steps.

[PeterPan]

Well now this is an intriguing theory. I tend to be very laid back--as in, almost nothing bothers me. Kids screaming, messy house, whatever...

 

Never thought of it as under arousal, but that would fit. Huh.

Just to split hairs, but there's arousal level and responsiveness (both sensory and to requests and situations).  Someone can be hypo for sensory (not noticing pain, cold, kid behavior, etc.) but be high stim (high arousal) for their brain waves and how they're functioning.  Someone can be low stim (low arousal) and be hyper-sensitive for sensory.  

 

It's just helpful to split the hairs on these things, so we can understand ourselves.  When she's saying low arousal, that directly corresponds to brain wave patterns.  You take someone like my dd, and she wakes very slowly.  She's low arousal anyway, and when she goes to bed her brain waves on the wakey waves go really low and the sleepy waves are just deep, deep.  She takes a LONG time to wake up in the morning.  She improved with neurofeedback, which is software that attempts to help the brain balance out with more wakey waves and less sleepy waves.  This should, supposedly, improve inattention, but it definitely improves sleep/wake cycles.  Then you get someone like my ds, who would wake up ZING alert!  That's very high arousal.  His brain waves are totally the opposite, and the point of the neurofeedback at that point is to calm some of that down and let his brain have some more normal up/down to it, rather than just high arousal all the time.  And, what you find with significant neurofeedback, is that he now wakes a bit more slowly and might want to lie on the couch or let you rock him for a few minutes, something he never did before.  

 

To me, what you're describing is more like a hypo-responsiveness to stimuli, and it would fit with what you mentioned in the other thread about not looking over a few inches to see the clock when you wanted to know the time.  But I don't know you obviously, just tossing that out.  It's fun to think about ourselves and piece things together.  I'm just saying don't stop with one term, because it's actually more complex.  :)

[PeterPan]

Yes, this is my dd with the new dx. And the np had the EXACT explanation you did regarding the attention tests. ;)

 

She can't break things down to start and complete a task. Everything is that way. 

 

Her academics are good overall, but her visual processing is poor. I think that affects things in real life in a big way. Bad figure ground. Doesn't know that the shampoo has tipped over and is spilling out down the drain. Doesn't notice things all over the floor. She can do laundry but she can't clean up after herself, if say, she has a bowl of cereal and spills it as she's pouring it and splashes milk all over.  So I notice it, bring her back, and go through the whole process step by step, because if I just say clean it up, she doesn't seem to know how to start or how to finish. She thanks me and is visibly grateful when I take her through the steps.

Yes, yes, that's how ds is, requiring help with sequencing and the steps!  And honestly, your OT is going to do jack for that.  You can work on sequencing with sequencing materials.  Super Duper has some stuff.  I was reading some nifty ideas lately, but I haven't tried them yet.  Like really, even stuff that we do on say narrations (print a story onto strips and reassemble in the right order) is sequencing, so we can weave it into things.  We can work on sequencing when we talk about our favorite movies.  

 

I think the challenge is that we don't want to do for them but need to PROMPT for them to do it themselves, kwim?  Then, when we have taught them the steps, we can fade the prompts.  But we don't want to do for them anything they can do for themselves when given the steps.  And yes, it takes a lot of time.  But I figure, if it takes me longer to teach the steps, it saves me time in the long run where he can do it for himself.  And if it's a routine, something they do every day, you can give them a visual support for the steps.  

[Tiramisu]

Yes, yes, that's how ds is, requiring help with sequencing and the steps!  And honestly, your OT is going to do jack for that.  You can work on sequencing with sequencing materials.  Super Duper has some stuff.  I was reading some nifty ideas lately, but I haven't tried them yet.  Like really, even stuff that we do on say narrations (print a story onto strips and reassemble in the right order) is sequencing, so we can weave it into things.  We can work on sequencing when we talk about our favorite movies.  

 

I think the challenge is that we don't want to do for them but need to PROMPT for them to do it themselves, kwim?  Then, when we have taught them the steps, we can fade the prompts.  But we don't want to do for them anything they can do for themselves when given the steps.  And yes, it takes a lot of time.  But I figure, if it takes me longer to teach the steps, it saves me time in the long run where he can do it for himself.  And if it's a routine, something they do every day, you can give them a visual support for the steps.  

 

Yeah, and my dd is a teen. When you know that you realize that things aren't quite NT.

[PeterPan]

Oh Misu,  :grouphug: 

[Tiramisu]

You know there seems to be this generational thing going on. Like my mom has this big job, but you can barely sit in her car there's so much stuff. Her room looks crazy. I teach these coop classes and parents applaud my organized schedules, but I struggle to keep things organized at home. And then there's dd, very decent academic achievement, most of her teachers think everything is fine besides missing deadlines and not handing in assignments, but her daily life is really affected. In her locker in school, there was just a big pile of stuff, including a lot of empty water bottles, sitting at the bottom. It's these extremes and the people who see only the good part of that can't believe that everything isn't perfect. It's like we only have so much mental space for organization and we set our priorities and everything else just sort of falls where it will. In hsing, I am hyper-organized and hyper-rigid about getting our work done, because that's the only way I know I can make it work.

[maize]

You know there seems to be this generational thing going on. Like my mom has this big job, but you can barely sit in her car there's so much stuff. Her room looks crazy. I teach these coop classes and parents applaud my organized schedules, but I struggle to keep things organized at home. And then there's dd, very decent academic achievement, most of her teachers think everything is fine besides missing deadlines and not handing in assignments, but her daily life is really affected. In her locker in school, there was just a big pile of stuff, including a lot of empty water bottles, sitting at the bottom. It's these extremes and the people who see only the good part of that can't believe that everything isn't perfect. It's like we only have so much mental space for organization and we set our priorities and everything else just sort of falls where it will. In hsing, I am hyper-organized and hyper-rigid about getting our work done, because that's the only way I know I can make it work.

My locker used to be full of moldy sandwiches. Empty water bottles aren't so bad ;)

 

When you've got a bright kid it can be hard for people to see just how much executive function deficits are affecting them unless they are intimately familiar with all the details.

[PeterPan]

Misu, it sounds like you have a lot of compensating going on.  Hyper-organize one thing because you can't be just can't just be kinda normal messy, normal organized across the board, kwim?  And yes, it's possible for someone to hold it together for one preferred thing and then have a wreck in everything else.

[Heathermomster]

Well now this is an intriguing theory. I tend to be very laid back--as in, almost nothing bothers me. Kids screaming, messy house, whatever...

 

Never thought of it as under arousal, but that would fit. Huh.

Son's 2nd grade teacher (who later became my BFF) flat out ask me at our first parent-teacher meeting whether DS ever got mad. Teachers overlooked A  LOT of his learning problems because he was so chill.  Until he was diagnosed ADHD inattentive, I just assumed he was just super chill and then I started reading.  DH and his brothers are super chill too and they are not ADHD.  IDK, his attitude seems neat until he drives and then I wish he were more alert.  Little kids love him, and he is very tolerant.  While in school, I felt some of his same aged friends used him, but as a teenager he speaks up and pushes back.  Son's room, locker, and bedroom have always been a hot mess.

[Heathermomster]

I think what you're seeing there *is* the caffeine/stimulant flip.  It's why stimulant meds work.  Yes, when dd has caffeine, she becomes groggy, sleepy.  It's one reason I've been scared of the meds, because I figured we'd spend a ton of time trying to get it right, zonking her, etc.  I really don't know.  

 

EF is considered a portion of the brain, so the general theory is that any time you're working that portion of the brain you're going to see improvement.  I mean working it *therapeutically*, which means with intensity to get an effect.  So, for instance, if a VT doc has the dc working intensely for 10-15 min a day doing activities that just *happen* to include rhythm, working memory, etc, etc. (anything EF), then the parents will go WOW, look at how awesome VT is, my kid got VT and now he cleans his room and packs his backpack and...  And really it's the EF bump from targeting that part of the brain.  The VT doc, in that scenario, was trying to take vision skills and get them functional, which is why they would do vision (or visualization, a strong learning technique) with working memory, etc. etc.  So it's very common to get some lifestyle carryover with VT that wasn't really so much from the vision as that they were targeting that EF portion of the brain.

 

So yes, you can target EF therapeutically, absolutely.  The Linguisystems workbooks have TONS of exercises and things you can do for EF, all done in brief, intense spurts to be therapeutic.  I think your thing about supports and structure are good too.  They're just different aspects of a total approach.  The neurodevelopmentalists and some of the orgs that work in that vein really focus on things that can be done *therapeutically* to improve EF.  Absolutely those options are there.  Remember Storygirl looking at a school that offered a program like that?  This stuff is out there.  I'll try to find that Linguisystems stuff.  I got both workbooks and did some with dd.  Ds isn't even close to ready for them, mercy.  They were good though, partly just for cluing me in to all the areas affected by EF.  Once you get the jist, then you realize how to target it.  

 

Executive Function Materials - LinguiSystems

 

This link has the workbooks and also the EF Source book.  That latter book is a really good read.  Our SLP got it and I spent a couple hours going through it.  Took my approach to EF to a whole new level.  Most of your EF stuff focuses on how it affects behavior, school work, that kind of thing.  That Source book is targeted at SLPs, so it's just a whole different direction.  Blew my mind.

:blushing: I own the Adolescent Executive Functions Training book. I purchased it about 4 years ago maybe.  So, I need to do that with DS and count that as health. Should I purchase or attempt to locate the latter two books on the page you linked? Is one book better than the other?

 

DS tests gifted in both VCI and PRI. Visualization is not an issue for him.  The kid can see in 3 space very well.  How would VT benefit him?  

 

 

[kbutton]

Yes, yes, that's how ds is, requiring help with sequencing and the steps!  And honestly, your OT is going to do jack for that.  

 

Our OT actually worked on sequencing steps with younger DS, but I can't say that it carried over. Still too many things going on at a time for him. Breaking things into steps...insert hopeless, maniacal laughter.

 

OTOH, DS 11 with ASD can do multi-step stuff a lot of the time. It depends on the situation. He struggles to break things into steps, but can often do it if primed (not so flexibly though).

 

Our middle school coop class may be working on taking tasks and breaking them down. I am not sure whether that sounds cool or daunting since I am the teacher, but it does make me feel better to see that there is a range of abilities in this regard. Makes me feel better about where we are. 

 

I heard an ADHD lecture that really hit home how deeply even NT kids struggle with EF and how often they are just doing what they are told, not setting up EF strategies for themselves.

[PeterPan]

Heather, do you think that super chill is partly the crazy low processing speed?  And, just to play devil's advocate, wouldn't a stimulant med be *better* for that because it would up processing speed?  I really don't know, just thinking out loud here...

[Heathermomster]

Heather, do you think that super chill is partly the crazy low processing speed?  And, just to play devil's advocate, wouldn't a stimulant med be *better* for that because it would up processing speed?  I really don't know, just thinking out loud here...

We will be seeing the Dr. soon, so I will ask her. Caffeine has no effect on him. I want DS to be re-evaluated with a NEPSY II on meds to see if his baseline shifts at all.

 

Oh, and I found this pro-med website yesterday.  I am not looking to debate and am just throwing the link out there.

[Heathermomster]

Our OT actually worked on sequencing steps with younger DS, but I can't say that it carried over. Still too many things going on at a time for him. Breaking things into steps...insert hopeless, maniacal laughter.

 

 

Son's Wilson tutor and I were sitting in a 5 person pre-5th grade year meeting when someone mentioned DS's spelling. The staff Wilson tutor and I looked at each other and burst out laughing. The adults around us just looked at us very confused until she explained that DS struggled with spelling.

Edited January 4, 2016 by Heathermomster

[nature girl]

I started following the blog after reading the linked post in the OP last week, and she recently posted an update about setbacks they've had. So...there are no perfect answers. That's the thing about neurological disorders, it's so up and down, there are good days and bad days, good weeks and bad weeks, you breathe a sigh of relief and then get slapped in the face with reality. She also talks about cultivating love for difficult children...a very brave post.

 

http://beautifulinhistime.com/2016/01/05/maybe-your-special-needs-child-just-needs-you/

[Lecka]

That is a nice blog post. 

[kbutton]

If anyone is interested, you can subscribe to her SN blog posts without subscribing to the whole blog. She's also posting to her Facebook page's feed more than she used to.