executive dysfunction and lots of motherly guilt

Executive function/dysfunction was referenced in the report prepared by a pediatric neuropsychologist who worked with our son for several days at the beginning of third grade (he just finished third grade). From what I understand, executive dysfunction is the difficulty or inability to “make a plan” or “execute a plan” to accomplish tasks. This seems to have to do with the difficulty in breaking tasks down into the small steps that any task requires.

Here’s exactly how that part of the report read with regard to our then eight-year-old son:

Executive Function:
Functioning in this domain was also variable. Kevin demonstrated some relative weaknesses in the area of executive function, which refers to working memory and the mental organizational processes associated with generating, implementing, monitoring, and revising strategies and plans of action. As mentioned, his performance was relatively weaker on complex tasks that required independent planning and organization (DAS Pattern Construction, CVLT-C; ROCF). In contrast, parent report did not indicate any concerns in this area. Teacher report was similarly benign, although some difficulties with initiation of tasks were indicated.

We, his parents, are not overly worried about this. His two main diagnosis were expressive/receptive language disability and a fine motor coordination disorder. His gross motor skills are well-intact; in fact, he is a fine athlete who possesses what some may call a “physical intelligence”.

Kevin’s strengths and weaknesses are all over the map. In areas that should relate to his demonstrated weaknesses, he has strengths, and visa versa. I have seen the term “uneven development” and think it describes Kevin perfectly.

I, too, have felt enormous guilt from time to time since we started down this road: “Was is the drugs that prevented me from going into pre-term labor?” (Kevin and his twin were ultimately born at 35 weeks), “Was it the drugs they used to treat my pyelonephritis at 26 weeks gestation?”, “Was my diet optimal?”, “Did I provide enough stimulation in early infancy?”. I mean, as a mother, it just goes on and on. My husband is much more pragmatic about this issue. Giving birth at 22 weeks was no option, nor was losing a kidney (not to mention the babies) to untreated pyelonephritis. In the last year, I have learned a lot about perspective, and spilled milk, and trying one’s best, and how love fills in many (but not all) gaps.

May God Bless!
JAO[/u]

My son could not plan how to get himself ready in the morning unless I repeated each detail to him and left out every article of clothing.

After IM this problem was significantly improved. He can not only get himself ready but can plan all the steps to make pancakes and a few other recipes. He can now clean his room (not that he does this without prompting) before he seemed clueless about where to even begin.

He also had organizational issues that I thought were helped with vision therapy.

I went into his class yesterday and was poking around looking for his desk. I could usually figure this out by finding the most messy desk. It is usually the one with all the papers hanging out the slot.

He came in and showed me his. It was one of the neatest. Books were all stacked without a single paper out of place.

Just get at the underlying deficits. That is my mantra.

My youngest dd also has signficant organizational and planning issues….Also doesn’t know where to begin with something (especially her room)….Someone posted recently (was that you as well, Linda F?) that there is an IM provider out there in NJ that will do 2 for the price of 1. Can you share who that might be, as I have another who might benefit as well? (and thanks for the lead on the dev opt and audiologist in response to my other post).
thanks,
dab-nj

the tourette’s site has good info; so does one called, I think, school behavior.com

You could google it and come up with good articles.

Ross Greene, The Explosive Child, also has a good section on it (first thing I ever found for lay reader, not neurologist!).

Understanding XF, and specifically, dysfunction, has been one of the most important things, as I have always felt that it is the most debilitating of my 12 yr old NLD kid’s issues.

Good luck, sorry the links aren’t more clear. Doing from memory

Like so many of the issues our kids have, executive function always has me wondering if it IS ADD, or a piece of ADD, or just ADD-like. It seems like so many LD kids have issues with organization and I suppose it could come from a variety of root causes. My personal theory is that few of these disorders have firm boundaries around them - funky brain wiring is funky brain wiring and lots of our kids have similar issues regardless of DX. That’s a long winded way of agreeing with Linda - remediate the underlying deficit and don’t beat yourself up about the cause or label. (BTW, my son had neonatal chicken pox, and I’ve always thought this was the cause of his issues, but again it doesn’t really matter why….)

LindaF - I had to laugh at your description of your son’s desk. I too find DS’s desk by looking for the messiest one. I hope after VT he ‘ll be able to visualize a more organized approach to his work and his belongings.

My globally LD/gifted daughter also has “executive function” problems. It is also sometimes called dyspraxia. We did the sensory integration OT for approximately 2-1/2 years. Things are MUCH improved, but still probblematic.

Her OT explained it by saying for instance, when you are cooking, what do you have to do? I said, get the meat out, put it in the pan, etc., etc. She said, “No, First you have to open the cabinet door…”. Like “Duh”, but she WASN’t being ugly, she was just showing me how HARD things can be for my daughter. Step 1, Open cabinet door, Step 2, get pot out. Step 3, etc.

For another example, my daughter would pick up her backpack and lunchbox when we were getting out of the car and then say, “Mom, open the door my hands are FULL. I always thought she was being bossy, but her OT told me she HONESTLY didn’t think to put down the lunchbox, open the door, and then pick up the lunch box and get out.

Amazing to me, but it became a real “eye opener” on how I saw things. Her OT told me any novel situation she should be “walked through”. Like when she goes to MS I plan to take her over to the school during the Summer to walk her through her classes, where the rest rooms are, the cafeteria, etc. Her Assistive Technology Specialist believes this is imperative for her success as well as getting her combination lock ahead of time so she can “practice” opening it over the Summer.

It’s those little things at a new school that can really throw an LD kid.

JAO -I heard the same comments regardng organization and fine motor skills about my son (the one in question) when he was younger also. If I could do it all again, I’d listen much more closely to those warnings and act on them as diligently as I could financally afford. Thanks for the excellent info, and the empathy regarding my guilt :-) My guilt is extreme however, because I’ve spent the last 9 years advocating for dozens of kids, interpretting evals for clueless parents, helping the district find appropriate placement for their students, and here my own kid has gone neglected.

LindaF - Your description of finding your son’s desk is EXACTLY what my husband and I used to do at back-to-school night. Maybe I’m finally on the right track in figuring this poor kid out. What is IM?? (Instant messeging didn’t make sense) Funny thing about your mantra - it’s exactly the same as the one I use on my BP parents support list - don’t sweat the dx - treat the symptoms. Guess great minds DO think alike. Thanks for reminding me that this mantra can be applied to LD’s too.

BarbaraP - I found the articles on the Tourettes site (boy, do those parents have their act together or what. Some of the best info in on their site). Also, Ross Green’s book, as well as The Bipolar Child by the Papolos’s, sit on my desk at all times and are my “bibles” when dealing with mental illness issues on my other support list. Once again, I’ve overlooked the obvious. (Maybe I have some degree of executive dysfunction also. After all, our kids get their issues from somewhere, right?) I will look up EDF immediately.

Lastly, does anyone have any info regarding response to stims if ADHD is NOT indicated???

Thank you all.

Sorry - I haven’t been on LDOnline in a number of years and didn’t realize there could be multiple pages per post.

KarenN - OK - it’s sinking in now. You mean address each area of weakness and don’t worry about what we call it all, right? Hmmm - my son is 16 y/o, going to be a junior, and at this point he’s learned how to not care anymore. He’s not interested in getting a nueropsych to determine his learning style so he can remediate and/or accomodate - his response to my offer was “I do nothing at school right now and pass. Why would I want to change that.” He is being treated for chronic depression, and goes through life with a why bother attitude that escalates into complete shutdown when forced to deal with issues he’d rather ignore. He thinks he has ADHD, but has never fit the criteria. He’s currently on Wellbutrin, which does lighten his mood somewhat, but not to the extent that I’d like to see it (but maybe that’s just his personality). He has a wonderful pdoc (psychiatrist), and he loves his tdoc (therapist) who he sees every other week by his own choice. So, where do I go from here?? (I apologize if this reads negative or arguementative - that’s not how I’m feeling. Frustrated and confused maybe??)

Leah-FL Thank you for this description. It does help me to understand what these kids are going through, and sounds amazingly like my friend’s son (the one I was advocating for when I had my EUREKA moment about my own son) So my next question is - what can WE do to help them … patiently give them the step-by-step instructions? Will they eventually learn to self-talk themselves through?? PS - We did the MS visits with my middle boy, and got his locker combo et al, when he began public middle school. It was GREAT - he also (completely coincidentally) got to meet his resource room teacher and school counselor on one of his visits, and he started on day one with confidance.

To All - You know, 9 years ago when I was searching for answers for my middle boy, this site was my lifeline. Through the advice I received here, I was able to properly identify issues and advocate for appropriate services for not only my own kids, but many others also. My middle boy was dx’d with Early Onset Bipolar Disorder at a nueropsychological eval that I took him for at the insistance of a woman on this site named Rose. (and if you think I sound stubborn now, just ask Roase how many months she stayed on me to get that eval ;-) . Finally getting the correct dx for my son has not only saved his life (LITERALLY and figuratively), but my marriage and family as well. Another woman named Laura offered a wonderful online tutorial, which I worked through and thereby gained the knowledge and confidance I needed to advocate effectively. I have tried to “find” these people again, to thank them, but have not been successful. If any of you know them, please make sure they know that they’ve made a positive difference in many lives. Thanks!!

nt

Its great that these boards have done so much for you. Im sure you have done even more for others

Please dont forget that some things these kids go through are typical of the age. I see this on the gifted board all the time-parents convinced their 2 yr olds’ tantrums are because theyre gifted-no, its because they are two!!!!

Your oldest son sounds like my oldest now 18 yr old son. Let me throw in my best friends oldest son as a shining example too. “they” say the eldest is the most motivated but I sure havent seen it.

Mine sees no reason to work for As if he can do nothing and get Bs with an occassional C. And my middle hyper-motivated straight A son was a freshman this year-and guess, what-hes now spouting the exact same stuff-says he switched his schedule out of college prep at the end of the year-he BETTER be teasing me!!!!

Its my youngest I am on these boards for. The 15 and 18 yr old are plain ole typical teens-god help me!!!!!

I actually like this label because it means something and nothing all at the same time. “Pssst he is one of those funky brain wiring kids” “Oh one of those.”
See, it means nothing and something.

I guess it just makes sense to me because I have some funky brain wiring of my own.

IM= interactive metronome. I have a friend whose son is in middle school and adverse to any testing or treatment. She showed him the information on IM (given to her by the provider) along with all the info on it’s use by athletes and let him decide. He wanted to do it.

I didn’t mean to address the symptoms. I really think you have to get beyond the symptoms to the root cause of what his causing the symptoms. This isn’t easy.

Treating the symptoms is what the schools do. I see it as a mouse on a wheel solution. The child is forever going around and around trying to keep up because he still carries the burden of the underlying disability.

I see treating the symptoms also as the same as giving pain meds for a brain tumor. Sure, you feel better but what happens down the road……

I think one of the toughest things about a kid who has multiple, incongruous (non-overlapping from a therapy standpoint) issues is deciding (and having to decide) what issues you, the parent, are going to be able to address.

Our son has been diagnosed with expressive/receptive language disability, small motor coordination disorder (which leads to dysgraphia), and some weaknesses in executive function (see previous post). We are motoring him back and forth to private LMB tutoring, at significant cost, and my schoolteacher husband is working with him with the Phonographix program, as well, because we see the need for him to develop his language skills as an absolute must.

He gets therapy from an school SLP as well, and a school OT. The district only gives him 90 minutes of OT therapy a month, and the OT’s caseload is unbelievable. We applied for additional OT therapy through our local Mental Retardation and Developmental Disabilities foundation, but were turned down because Kevin “was not compromised enough”. I guess that means if a kid can button his shirt, he is good to go. Our insurance, so far, has not covered OT, so because of our resources being limited, in the scheme of things, we ask ourselves, “Is it more important that he read, write, and understand, or that he master the mechanics of writing?”

How frustrating to have choose one skill to develop over another, but that seems to be the reality for many parents. If anyone has any other ideas on how to address the issue of mutiple learning issues at once, pls post.

Thanks,
jao

Gadget’s mom- Don’t worry about sounding negative or anything like that - that’s what we are here for. Someplace to vent and fret.

I agree with you that when depression and the question of medication comes up a diagnosis might provide a clear picture of what to do. I have been grappling with my need to have a dx for the past year, and am only now making peace with the idea that there may not be one. And yet it does confuse questions like should we medicate him for anxiety and/or attentional issues? Our psychiatrist is one of the only people that doesn’t want to try a stimulant med. b/c of concerns that it might make my son psychotic and his belief that my son doesn’t meet the criteria for ADD. It would have been easier if he was clearly ADD b/c then I would be willing to try medication.

It sounds like you are in good hands with your doctors and therapists. I would suspect with a 16 year old you need to get his emotional issues stablized before he’ll be willing to do additional remediation.

IM by the way is Interactive Metronome. Many mom’s on this board have had good results with it, and your son may find it an interesting challenge. www.interactivemetronome.com

Jao — if you want my outlines on how you can work on handwriting skills yourself (personal experience — dysgraphic myself and also my daughter, plus tuitoring), please email me at [email protected]

KarenN — OK to vent and fret, do it myself. But what I like about this board is that it is NOT whine central, there are real answers out there. I try to give the answers I can and direct people to others who know other things.

Jao,
Its true, you do have to prioritize your therapy/remediations. There is only so much money and time to dedicate to all of this!

I’m frustrated sometimes (and concerned) that perhaps we haven’t attacked the issues in the most efficient manner. On the other hand, as a child develops some issues smooth out, and new ones emerge. When DS was 4 it was OT for motor planning. It was too soon to know he’d have a reading disability - but that did become our number one priority the last year and a half. We too did LMB, and hired a private OG tutor. He’s making progress and will attend an LD school that focuses almost entirely on reading/writing. His handwriting has stabilized at an OK place, probably b/c of the early OT. (my theory!)

I figure that next year when he’s finally in the right school environment, and I have this crackerjack faculty working on his reading and writing, some of the other stuff will become more clear. Like does he really have an attention problem … would OT be beneficial again… is his anxiety under control…etc. Then I’ll figure out what additional therapy is appropriate then.

JOA,

My son too has numerous issues. From your description, I would consider Interactive Metronome. It might be a fairly easy sell—it improves coordination for sports. One of the Catholic highschools here put their whole football team through it, and it improved their reading as well!!! I heard the Dolphins all went through it too. (HQ is in S. Florida).

My son did it with great success about a year ago. It helped his handwriting—he had major output issues, attention, coordination, and helped him break through a number of barriers we had reached with other therapy. It helps kids who have a definite motor component to their learning disabilities.

Beth

KarenN - I completely relate with the angst over the conundrum of which learning issues (if any) will “iron themselves out” as the child continues to develop and mature.

While our Kevin’s (LD child) handwriting makes the school OT shiver (she wants to just forget about handwriting and put him on an “assistive device”), it’s really no worse than his older brother’s was at the same age (my husband saves nearly all of the boys’ schoolwork - soon, we’re going to have to buy a separate storage facility :D - anyway, we were able to compare apples to apples in writing samples), who just finished sixth grade, having been on the honor roll for the last eight grading periods. The older son, Jack, has not really improved his handwriting that much from third or fourth grade, but now uses the computer for most assignments. I guess his handwriting must be good enough to get him by, because he passed all five parts of the Ohio sixth grade proficiency test, where he was unable to use a computer.

How does one know what is just “uneven development” (and as thus, can inherently be developed) or what is an all-out disability that won’t ever be ameliorated without intensive therapy, and which may ultimately define that child’s potential for success? That continues to be the dilemma…

jao

I have a friend who is pursuing therapy for her son’s auditory deficits through an audiologist.

She and I both really hit the therapy acclerator at the end of second grade. I don’t know if there is something to that particular age but I think up until that point I still believed he just needed to learn to read and all would be right with his world.

I think I have noticed that age being a time when parents seem to really see things one way or the other.

I think some kids really do just need effective reading methods. Others have more complex issues.

WOW - I missed a day on here and this thread’s expanded so. What great info - lots of food for thought.

IMHO - a parent should persue therapy when he/she sees that the issue is frustrating the child, or compromising the child’s quality of life.

My 16 y/o was ID’d as gifted in first grade, and always read at an amazingly high level, but his written expression was below grade level. Due to the philosophy of the principal of the school he was attending, he completely shut-down by 4th grade, so I switched his school (to another public school within our district). His new school gave him use of a computer at all times, but his composition skills still lagged. He was dx’d dysgraphic and entered special ed. From 7th through 9th he rec’d OT/PT, which did next to nothing but he enjoyed them. During the summer between 8th and 9th he was tutored by a wonderful TA from his high school - she used the Diana Hanbury King series at my request. In 9th grade he scored in the 98% for our states writing assessment - WITHOUT A COMPUTER.

I see what may be executive function weaknesses affecting his life in many ways - work, school, homelife, etc. I see it as a detriment. Now I just have to find out if he sees it that way too and is just too 16 to admit it, or if he truthfully has things under control.

I need to re-read all of your responses - really good stuff here guys. Thanks!!

PS - NT = Neuro-typical

Well, we’ve got the multiple issues thing going on. We started with reading and writing (b/c they SEEMED the most significant). The OT for the writing was a sensory integration OT, so she helped in all areas. We also received 30 min./wkly of OT through the school.

Assistive Technology (use of laptop, software for LDers) has also been very helpful while the handwriting was being addressed. With a keyboard and the right software, my daughter can write and she doesn’t have to worry about spelling, etc. Made quite a difference.

Sometimes what you can’t remediate you can find a way around. That’s what we’ve do so far.

Linda F
Guest

My daughter has a hard time getting her room to stay clean, but at school, her desk is really neat.

I had to do what you did with the step by step on laying everything out and still sorta doing it, but making her do it. On the cooking, that isn’t there yet. So I was wondering how you helped your son to achieve that goal. If you wouldn’t mind sharing with me? Thanks.
debbie

It was the interactive metronome that helped him. Improving his motor timing improved his attention and executive functioning also improved.

www.interactivemetronome.com

My son has motor and sequencing issues. I think children with these types of issues benefit the most from this program.