Yllek (or anyone else)--Let's talk executive function!

[PeterPan]

In another thread you mentioned your dyslexic dh does even better than the average bear with EF issues because he has learned coping measures. Can you talk about some of them? It seems to me a doctor would have to be pretty neat, lol. I've been in survival (read burial avoidance) mode so long with dd, it never occurred to me I might be able actually to teach her a skill that would make a difference.

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[PeterPan]

Well that sort of mirrors what I would have guessed. The external stuff is propensity (to distraction, to...) and the internal stuff can be affected by their character. Probably not as absolute as all that. It's just funny to me how incredibly good my dd is at certain things (like packing for camp: she began a month ahead of time!), and how incapable she is in others (like remembering to put a lid on something). And no, I have no sense of time. I tried measuring it recently, and my internal chronometer is off by 2, meaning one minute to me is 2 minutes to the rest of the world. Not sure what to do about that or if there is a help, lol. My dd seems utterly unaffected. She's developing in the self-regulation and character issues you mentioned, and they'll probably have to cover for the rest. I'm hoping OT and eventually IM will work some kind of miracle. Her future family will appreciate it.

 

I just looked up that Dweck book, and one of our local library books has it. :)

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[PeterPan]

Oh yllek, these therapies can totally affect it. Oh my lands. You just don't know what we've gone through. I went for YEARS with my dh thinking it was all my fault. Ok, so I'm not exactly the most pristine, mainly because I'm de-energized a lot. (When I feel well, the house magically gets clean!) But dd's issues are BEYOND character. I mean it's just unbelievable. It's beyond character, beyond habit, beyond... I suppose we could have chosen to have her live in a constant state of terror over her room or this or that and used that to get her there. But about 4 months into the VT I started noticing that she had begun taking her vitamins, all three doses (breakfast, lunch, and supper), all by herself! And she had started remembering to feed the dog. You just don't know how huge this is. Mentioned it to the VT, and she said that indeed some of the things they were working on WOULD carry over and affect executive function stuff.

 

Even dh now says this is beyond the pale, beyond normal. I agree I could have tried harder and kept up better, but that just wasn't my reality. And with the therapy, things have turned to a degree on their own, almost invisibly. It makes me think the OT is right, that as we get into executive function aspects of the brain, we'll be able to get improvement.

 

What I was really hoping was that your dh had found something he could say to himself to help himself through this process. For instance I'm extremely perfectionist, so I raised my dd saying "It doesn't have to be perfect." She is now delightfully laidback. I've begun working with her on "handle things once" (an organizer tip!), because her brain doesn't work logically enough to come to that point on its own. Everything she does she does inefficiently.

 

I think the room thing has to do with vision (wanting things out) and working memory (dropping the ball, not following through). I've chosen to be pretty low key about it. I go in and help her clean it occasionally, which she has come to accept.

 

I'll definitely look for the Dwek book.

[Tiramisu]

I just want to say that I hope you continue this conversation.:)

[Leonor]

I found it interesting that yllek says that her husband was a competitor swimmer.

This is one of the best exercises one could do for any type of issue especially executive function because of the crossover and integration of both sides of the brain.

 

Another great book to help disorganized teens and preteens that was mentioned on the High School Board is That Crumpled Paper Was Due Last Week by Ana Homayoun.

 

This is a great thread. Thanks for sharing ladies. I'm off to finding the Dweck book!

[PeterPan]

Thanks Leonor, you just reminded me! I had been meaning to look up Brain Gym. Turns out there's a new 2010 revised edition. Another thing to add to our school day. Anyone have any experience with this? Everything looks good, till you buy it, lol.

Edited December 28, 2010 by OhElizabeth

[Leonor]

The book Smart Moves by Carla Hannaford, Ph.D. talks about Brain Gym. I've owned Smart Moves for a long time. If you have not read it, I highly recommend it.

The audiologist that just recently evaluated my son for auditory processing recommended it as well.

[PeterPan]

Leonor, have you read the Brain Gym book to compare them? Would we want both or just Smart Moves?

[Guest]

Smart Moves is a great book. Another interesting one is The Body Has A Mind of Its Own. This is a harder read, not immediately applicable perhaps to our kids, but nevertheless absolutely fascinating in the larger picture it draws about mind-body links.

 

Dd and dh, both Aspies, have different aspects of their executive function out of whack. Dh really has trouble with procrastination; if he sees a deadline, he'll file whatever has to be done UNDER THAT DATE, so he never sees it again until the date it's due. He never, ever does anything until the last minute, from grocery shopping to leaving to catch a plane to taxes.

 

Dd, on the other hand, has much heightened anxiety compared to dh, and she overcompensates in the other direction. She'll begin things months ahead of time, make elaborate calendars for herself of what has to be finished each day as part of a longer project, etc. -- just the sort of thing teachers would love their kids to know how to do. But she is horribly anxious over it all, to the point that she can spend the night before tossing and turning because she's worried she won't finish two hours of work the next day. She worries all the time that we'll be late for appointments or meetings, to the point that I have deliberately been late so she can see that the world doesn't fall apart.

 

Both live in visual/material chaos. They never return things to the place they got them, every flat surface along their path gets stacked with things in layers, they spend hours searching for things, and will even not know where everyday objects like scissors or toilet paper are kept despite the fact that they've been in that spot for TWELVE YEARS.

 

Dh's mother, also an Aspie, left a mess when she died. There was a path to her favorite chair in her living room, stacked along its edges with papers and books four feet high. Down at the bottom was mail from thirty years previously. She'd just set it down and then stacked the next day's mail on top, and when the pile got wobbly she started another pile. There was literally not one square inch of available counter surface in her kitchen.

 

I live in fear of dd growing up to live like this. I think it creates a lot of anxiety for dd and dh when they have to spend so much time searching for things repeatedly, and sometimes, it matters -- as when someone misplaces or loses track of a passport before a trip, for instance. But so far, nothing has worked to help them not do this. I can clean, organize, mark boxes and cabinets, buy containers meant for holding things like toothbrushes or hair ties or socks... the order I impose lasts about two days max.

 

Dd, fourteen, doesn't want to ever carry a purse, phone, keys, money. She can lose dollar bills out of deep pockets, even when the money is PINNED in there. They can both walk out of the house into the back yard and lock themselves out; they can then leave the house to go somewhere else and NOT lock the door (fortunately I either always double-check -- I'm now compulsive about this -- or I'm home). Things that are absolutely routine and no-brainers for me just seem beyond their grasp somehow.

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[Guest]

And then BrainGym. I have both Smart Moves and Hands On. I will be so interested in chatting with you folks about BG, because I do. not. get. it. I wish someone would fill me in. Our experiences with the Brain Gym exercises have been a big... eh. No notable changes. Even our OT work, while good exercise and skills practice, has not produced any dramatic change in emotional regulation, organization, sensory issues, etc. The only thing OT seems to have done is affect muscle tone and tolerance for vestibular instability.

 

From what I have read about Brain Gym, the effects -- whatever they are for your particular child -- are contingent upon always keeping up the exercises. If you stop, so does whatever benefit or difference they have brought. At any rate, this is the gist of what studies have found overall; I suspect that as always there are kids for whom it makes a huge difference, others for whom it does nothing, and everything in between. But the impermanence of changes seems like a bigger issue. I think if Brain Gym exercises are part of a larger, varied repertoire, that would be where they might be useful, in the same way that varied vestibular exercises in OT are used to make a child's muscles and system adapt and adjust in multiple ways.

 

OT did marvels for dd's vestibular system, balance, and general tone, as you say. Other aspects bombed for us too. VT did so much for dd in other ways, but nothing in the organizational realm seems a readily apparent effect. I went through the Crumpled Paper book, another on the Disorganized Student, and did all the color coding, folder making, file launching, etc. both suggested. Big time flop. Dd is entropy personified.

[Guest]

But what about after therapy? I've known lots of resource and special ed teachers talk about the absolute necessity of routine for kids with limited EF. The activities that engrained as part of habit and routine produce less of a load on working memory. So in addition to the therapies, don't we need to make the sequence of our kids' days and the categories in our kids' space as obvious and explicit as possible?

 

 

Maybe I'm working with a whole different set of issues than you and OhElizabeth, despite some overlaps; but with an Aspie, I have to balance habit and routine with a need to keep her from becoming stuck in those and incapable of variation. This is true in every single aspect of her life. Aspies can cling to the familiar to the extent that they ignore the aspects of routine or habit that are not working for them and they can downright sabotage themselves in this way. I struggle with finding a balance, all the time.

[PeterPan]

Our OT said any effect on working memory would be as a side effect of working on the sensory, sort of a putting out of the 4 alarm fire ringing in her ears, if that makes sense, not a direct change. I've heard stories of people regressing after various therapies (IM, what have you) and people not, which to me means some people had a neurological foundation for the therapy to take and stick and others didn't. Our OT espouses that, and it seems reasonable to me. Some of the people with those examples did xyz therapy themselves, buying the equipment and implementing it. So I'm not sure in those cases whether the therapy is ineffective or whether the dc just wasn't ready neurologically for it to stick.

 

But no yllek, I don't see OT changing a blooming thing with EF. It has been very eye-opening, given us lots of comping measures, and put us on a path to changing the tone and sensory issues. I don't know, can IM even move working memory? Seems so Cure-All, Wonder Magic, I had lost track of what it could legitimately do. I looked at CogMed, and I'm less than impressed. I think you're right, that there are LOTS of things we can be doing in this way to help.

 

So your dh did IM? Nifty! Swimming would go over like a lead balloon here. Actually, she flunked the 2nd level, the one where they have to move both sides of their body. She has skated for years, but her lack of ability to weightshift finally caught up with her. I don't know if that will improve with OT and let her go farther or not. She couldn't hold her spins in tightly enough to pass to the next level, because her body doesn't neurologically use the arms for balance while skating. The OT figured that out, and we haven't had enough time to do anything about it. At this point we're just doing the stuff the OT says. I think there are some further things we could do to help, but it wouldn't be fun.

 

Well I'm on a tangent again. Yes, with ds I want to find something like karate or something, ANYTHING, just to fight against that low tone, low sensory awareness issue.

 

BTW, part of the reason I DON'T work harder on a clean room with dd is because she's very artistic. Her clutter is beautiful things like tea cups and pictures of American Girl dolls and clothes she has sewn and little figurines and things. Clutter to me is decorating to her. But then I guess you'd have to see the way I decorate, or rather don't decorate. Everything with me is spartan, formulaic, on a grid. So I try to give her some leeway and only remove messes, dirt, dirty dishes, that type thing, as there really can be personal tolerance differences. I mean the Victorians weren't exactly modern aescetics, lol.

 

Karen, I've been trying to think about your issue with routine vs. unmoveable rock of a habit. I don't know what to say. I think your method of picking only the most vital things to create as habit and then allowing her to experience changes in that within the security of your watch is probably a good one. Reminds me of xyz curriculum/methodology for which I've already forgotten the name.

 

So that was all to say I don't think we can take structure and routine to the point where we squash their personality or have unintended psychological consequences. With my dd, I'm looking for what *her* version of clean is going to look like, not trying to impose on her mine. But putting lids back and basic things, oh those are good for everyone, lol.

 

Well I'm kind of disgusted that people are saying Brain Gym and whatnot doesn't stick! But truly, I wonder if it's a neurological readiness thing.

[Guest]

Swimming would go over like a lead balloon here. Actually, she flunked the 2nd level, the one where they have to move both sides of their body. She has skated for years, but her lack of ability to weightshift finally caught up with her. I don't know if that will improve with OT and let her go farther or not. She couldn't hold her spins in tightly enough to pass to the next level, because her body doesn't neurologically use the arms for balance while skating. The OT figured that out, and we haven't had enough time to do anything about it.

 

This is so unbelievable -- my dd was EXACTLY THE SAME WAY with spins in skating. She got roadblocked at that level too. I tried and tried to tell them that they could work on spins until the cows came home and it wasn't going to change, for Pete's sake let the kid go on to something else, and we finally quit in disgust.

 

Interesting about your dd and swimming. Aspies often do well in swimming -- my dh and I met doing master's swimming, and my dd swam for years. She just wasn't interested in being on a team or in competition, and there was nothing else structured or social for kids. Did your dd have a teacher trained in sensory issues and the like? Ours was a special ed teacher during the day, swim teacher at night, and she was fantastic with my daughter.

 

Dh was on a competitive trampoline team and even worked with blind kids on the trampoline, which must have been fascinating. Dd, on the other hand, is scared stiff of even fenced in backyard trampolines and is terrified of falling on her head or neck. As you know already, Elizabeth, riding horses is what clicked for her.

 

Moving away from executive function; sorry -- but it was just so fascinating about the spinning!

[PeterPan]

Yup, the OT said it has to do with "weightshifting" and is neurological. Dd tried to show her, on the mats of course, how to do it. You start with your arms out, and it's as you bring them in that dd falls. Every time. OT watched and immediately said it was weightshifting. I'm not up on all this, but it gets mentioned in one of the Out of Sync books I was reading. That gravitational issue is sensory too.

 

I'm not sure how much it takes to improve the weightshifting. I know she has us doing this thing where you walk backwards down a door. Not explaining that very well. You put your back to a door or wall, about 1-1 1/2 feet away. Put your hands in front of you and watch them intently as you slowly raise them up, over your head, and put them on the wall/door. Now "walk" down the wall/door, still following with your eyes. Yes, you're bent over really funny at this point. I thought for sure I would fall when I first saw her do it! I finally worked up my bravery and tried. It has gotten much easier with practice. When you reach your limit, slowly walk back up, still following your hands with your eyes.

 

This works the core and puts the body off-balance to work on weight shifting. I don't know if this alone will do it or if there are more exercises to help. Oh, she has us doing push-ups where your body goes slightly forward as you move down, shifting your weight. We haven't been back on the ice in a while to see if there has been a change. Just too busy.

 

Our YMCA swim program was priced affordably but staffed by high schoolers. A special ed teacher (or anyone with any experience teaching or maturity or even just continuity of teachers from one session to the next) would have been a luxury.

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[PeterPan]

Yllek, your ds is or is not low-tone? I've been uncertain of how she'd do with things (like the aikido you mentioned), because some of the things we've tried wore her out, making it hard to do her school work the next day.

 

I suggest you do the IM and tell us what benefits you get. Then we'll decide. :)

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[PeterPan]

I've been thinking about this IM thing some more, and I think you should ask your dh WHY he disliked it so much. Was it the temperment of the practitioner making it drill seargent and unpleasant? Did he not have a proper neurological foundation or readiness and it was thus just too HARD?

 

That's some low tone! I had never made a connection between my dd's propensity to lie down to read (which she does a lot, haha) and tone. I do regret that I haven't been able successfully to intersect her into physical activity more. Some of the things I suggested got vetoed. (basketball, soccer) Just gotta work with what I have now. At this point the OT even suggested passive activity is good, things like being on a moving platform swing and trying to compensate and hang on. I did check into the aikido you mentioned. Just need to find the right kind of place. The one I found that looked nice was too far and in an inconvenient part of another town. Does the aikido do cross-body motions (crossing the midline) or is it more just for general work? She could use anything that would work her overall body awareness and strength. But really, I pity the instructor, hehe. She's not likely to catch onto the instruction quickly, unless it's someone who can put the movements into words. If they just show her, she won't necessarily be able to replicate.

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[PeterPan]

Yllek, have you done horseriding yet? It did more for my dd's core than anything we've done before. AMAZING. She gained 10+ pounds that summer (muscle) and actually shrank in her waist. We rode twice a week, had 1 1/2 hour sessions, where the lady let her curry the horse, put on her saddle, etc. It's hard to find a place that will do that, because there is danger of the horses kicking. You wear a helmet, by all means, and I got one specifically for horseriding. There are also hippotherapy (horse therapy) places that might take him. What they would do would be even more customized. Instead of just riding, they could work on specific skills while on the horse. But truly, just being on the horse and balancing with that motion does wonders for them. Our lady was incredibly generous, so we could afford to do it.

 

Oh, and dd had sort of this bond with the horse. Very few people understand what's inside another person, but the horse sort of quietly does. She would kiss it and talk to it and empathize with it. KarenAnne has also talked about the wonders of horses for her dd.

 

I have a therapy ball, but we never got it inflated. We're moving back to the basement, so I could put it at the table there for her to sit on while she works. Hehe, we are so devilish! :)

[Leonor]

OhElizabeth,

I own Smart Moves but was thinking of purchasing Brain Gym. I think Smart Moves is a great book to help understand so much more than the exercises. I would strongly recommend checking it out of the library if possible. Smart Moves is all about "Why learning is not all in your head".

 

I will be in and out checking the forums because I'm trying to take advantage of my husband not traveling to get some things in order before the 1st of the year.

 

I'll write some more later.

 

BTW, what is IM?

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[Guest]

 

Thinking about EF, it seems to me almost any long-term goal-oriented activity is helpful for developing EF. Of course, for our kids, there may be more to it than that. But I think that's why I've been thinking so much about activities other than therapy. Therapy sucks up so much of our time. I wish ds would have experiences that were... oh, I don't know... well-rounded? normal? Not sure where I'm going here... Feeling wistful about all the time and resources that we've spent. I don't regret the VT and language therapy at all, of course, but I'm feeling a little burned by the other things we're doing.

 

Oh, how I agree. The years when dd did VT, OT, social skills group, and was being evaluated were so draining, in every way: time, money, energy. It is very difficult indeed, not to speak of the fact that you must go through their exercises or homework every day, and eventually they get the idea that this really isn't a game, but hard work.

 

I was lucky to have a family friend, a psychologist, who urged me to find "regular" alternatives that accomplished the same ends as therapy. That's what got us into riding. Dd never went to therapeutic riding; she just started regular lessons at a place that insisted the kids fetch and groom the horses before and after riding. At first she was so weak that she couldn't work on a horse for more than five minutes at a time. Three years later: she has a part-time job in which she grooms horses, lunges them on a line, is learning to clip their coats with a huge, heavy shaver, hauls sawdust and food buckets, sweeps and shovels. (No, this does not yet transfer over into behavior at home.)

 

The continual need to readjust one's body position in response to the horse's movements is very like what OT tries to do. Eventually you need to learn how to plan ahead to execute a certain pattern or maneuver, keeping a number of different aspects in mind, like where your hands are on the reins, where your elbows are, where your calves are, where your weight is centered, where you're looking... I watch the kids and I'm amazed at all they have to remember and keep in mind -- of course they don't, always, but they're working at it.

 

For social skills therapy, we substituted drama classes. For continuing practice in skills that will (I hope desperately) lead to dd some day being able to drive, we have the stables people teaching her to drive a golf cart around the property. For further visual development, we have done art classes. I have even gone multiple times to roller coasters that came around with local fairs -- she was going through a phase where she was accepting being rotated in space and turned upside down, and this was a wildly fun and "normal" way to get more time doing that. Eventually she was able to go on roller coasters that did loops and such, and actually enjoy it.

 

Your child is still young, but there will be things like this in the near future and you will leave the intensive therapy stage. Feels like forever when you're in it, though. :grouphug::grouphug:

[PeterPan]

Where we rode they put small dc on the large horses. They just had an adult walk beside them the whole time. I don't think 6 would be too young.

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[PeterPan]

What irks me about OT is they inherently don't follow a homework model. They want us just to keep paying and paying. If they would teach us what to do and assign us homework for a month, I think we'd be a lot happier, kwim? I have room to install a swing in my basement, and many people might. Most of us would be willing to, considering the cost of OT is $5K+ a year (and that's at just one session a week!). It's the kind of talk I think I'm going to have to have with our OT. We like her, but it's just not reasonable to keep plunking out.

 

I don't think you have a problem with the ACTIVITIES so much as the negativity (therapy, therapy, therapy, droning it into their heads that they're messed up) and the expense without change. I think if they taught us what to do, let us do it, and we did it with FREQUENCY, we might see the changes. Then we wouldn't be so disgruntled. At least that's what I'm thinking.

 

I'm also seeing something different with OT though, which is the chance for my dd, who's 11, to figure out for herself what it takes for her to feel good and what kinds of habits she will need. So I don't look at this as some miracle the OT will do to her but rather as a process of her finding a regimen of things she can do as self-maintenance to keep herself feeling well and toned and healthy. I used to have a daily stretching and exercise routine (sit-ups, stretches, etc.) that I did in high school, college, and early marriage, and I never even knew how valuable it was to me. Now I see that for dd, and I feel like we're giving it to her. But no, if it's totally driven by the OT, we lose that. It has to be her learning what she can do for herself. But oh, that wouldn't make the OT as much money.

 

They have no financial incentive to teach us to do this for ourselves. I'm really challenged by your story of lack of progress to be more forthright with her (the OT) on this issue. I'm even concerned about IM. Say we do IM. That's supposed to be multiple times a week, isn't it? How in the WORLD could we afford that????? Nope, they are totally wanting to do for us (at great expense) things we can do for ourselves, to ourselves, if they would just show us how. But I forgot, they're the PROFESSIONALS...

 

Well I'll get over my rant.

 

I've been reading about the iTouch and ipad and whatnot tonight. I didn't realize there's student planner software for the itouch/ipad. There are also calendar functions, etc. So we could set alarms, input lessons, etc. (all theoretically here, not sure exactly how) and let the device do our "get your butts moving" for us! I love this idea! So I'm trying to figure out how all this might work and whether it might be a great help or not. Certainly is nifty even to have the option.

[Guest]

It's a downer, partly because therapy is so isolating, while the "normal" activities that may have therapeutic benefit, are not. I'd love for ds to be with other kids more. And, I find this again and again, "real" activities are more motivating, more challenging and seem to have more payback. Not just in terms of the therapeutic benefit, like core muscle tone or visual processing. I'm thinking about all the richness of experience that goes just regular ol' activities.

 

And this is what I so love about the riding: every time dd goes for a half hour lesson, we're there much longer, and it encompasses quite naturally: core strengthening (grooming, sweeping, carrying tack); fine motor practice (buckling bridles, adjusting stirrups, holding reins at varying pressures); balance; social skills (group lessons, talking with other riders, being asked and/or offering to help others, getting to help make videos about grooming the horses, playing with other kids at barbecues and other events); responsibility and feelings of competence (here, take these horses and exercise them, give them a bath, walk them dry, come back in two hours; teaching little kids in summer camp). On top of that, almost the best thing, in my mind, is her bond with the animals themselves. She not only receives and gives love and confidence, but she's also learning to communicate in nonverbal ways, and she relaxes fully as she rarely does in other situations. I just feel that we have hit the motherlode here.

 

This is what schools, however wonderful, can never accomplish for kids like ours, because all these skills are separated into compartments and little pull-out sessions. It's also what therapies alone cannot do, because they, too, come in separate packages depending on what is being targeted -- wonderful as they can be, in their own way, I hasten to say -- we got a lot from both OT and VT. But it didn't all come together until the riding.

 

Keep your eye on the end of the therapy tunnel -- it is there.

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[Guest]

Several months of OT did very little in terms of motor planning, coordination, bilaterality, etc. Just tone and vestibular stuff. Then we did just a few weeks of vision therapy and language therapy, and suddenly ds is making big strides in fine motor coordination, motor planning, etc.

 

Dh and I are talking about ditching OT altogether and using that therapy money to build a playstructure and buy a bunch of old-fashioned toys — a tetherball set, a skip rope, a basketball hoop — and using the time to go biking with the kids, meet friends at a playground, or do riding lessons. :)

 

 

Your thoughts and observations seem very to the point to me.

 

What about taking an "OT vacation" for a few months and see if the gains you associate with the other therapies continue or hold? If they do, then it would seem pretty apparent that OT is not contributing enough to your son at the moment to justify the time and expense (and frustration).

[PeterPan]

Yllek--I hadn't thought about looking for a timer on my computer, hmmm!

 

Now on the therapy, I'm not sure you're being realistic. (Maybe your 8 week VT progression has spoiled you? Hehe) Our OT never even suggested this was a short haul kind of thing. She said it's something people do for YEARS, and that over time you see the changes. Not saying I like that or want to do that, but just that that is the general assumption. Are there specific vestibular symptoms she's trying to improve so you can guage the progress? For instance, my dd gets carsick on hills and things (not to mention avoiding roller coasters or almost anything vestibular). So every week the OT asks about that and is looking for change. Not huge changes, but small, subtle changes none-the-less.

 

Also, while I'm TOTALLY of the viewpoint that life is where these things happen and get reinforced, I'm not sure that's always quite as effective as the isolated work they can do in OT. You've got a young child, so you're still in the hopeful land that if he plays and does these things, maybe it will all happen. We played and they DIDN'T. Play and life activities will work on some of these areas (and can be therapeutic in sufficient doses), but that doesn't mean they won't leave holes. It doesn't mean the child is learning why his body does these things or how to use it correctly. Nuts, it doesn't even mean the child is learning to do the activity correctly! My dd was doing all sorts of things with her hands but shifting how she held her thumb and fingers to compensate for her weakness. It took the OT to isolate that for us, show her a new (normal) way to hold them, and NOW we can carry that over into life and work those muscles to build them. I didn't even know what I was looking for before, kwim?

 

Now I'm curious about your homework routine, hehe. Wanna tell us about it? I have a little laundry list of things she has shown us over the weeks, and I've been trying to get dd to do them. I really didn't have a perspective for this (or time to enforce it!), so I'm trying to be more diligent here. Our OT usually hits a good number of areas, just rotating up how she works on them. So for our at home stuff I'm repeating those categories. In other words, I feel like my time and what I do at home is reinforcing and as useful as the actual session. Right now we're doing:

 

-tone exercises with theraband

-strength in shoulders/arms with free weights

-wall walking (follow hands up and over your head, then walk backwards down the wall, works on weightshifting and core strength)

-push-ups (works shoulders and weight-shifting)

-dragon legs (I call them this, you stand on one leg and do things, actually works proprioception)

-dog legs (to strengthen the lower back)

-prissy popping and doing things with our fingers (unifix cubes, moose poppers, etc.) to build thumb and two finger strength

-vestibular--I want to get the Sky Chair she has and start working on this too. I just haven't done it yet. This is a case to me where the expensive therapy is keeping us from doing more at home. Cancel one session and I have the swing, kwim? I think I can make a weighted collar to use with it.

 

So those are the categories of things our OT does every session. Oh she'll spice it up and vary, but that's what we're doing. But dd never would have understood the need for all those before. Now, not only does she know she needs them, but she sees that she can develop a lifelong habit to keep herself strong. Yes, she wanted us to do the brushing. It wears me out (I'm low tone too), and I apparently brush too hard, so we basically gave up. The OT wanted us to do it before bed as a way to help her calm down and transition to sleep. I get massage weekly, and if I had the money I'd just do that for her. Massage stimulates organ function and my guess is helps the sensory as a side effect. Dd is pretty sensitive and jumpy with touch. I'm sort of the opposite, craving deep touch. I get my massage so hard I get bruises sometimes. But that's totally an aside! So yeah, put two people who are opposites together for sensory and you get a mess. I don't try to brush her anymore. However the OT did clue us into using music to help her transition, and that has been MARVELOUS. Dd is learning how to help herself with this, kwim? So maybe you're not having the same experience because your ds isn't at quite the age to engage in the process? Well actually, part of it is that our OT is pretty nutty sensory herself (low tone, ADD, the whole nine yards). So when the two of them get together, it's like twins speaking Martian. They just *get* each other. I had a lot of symptoms growing up and just learned to deal with it. Dd wasn't able to deal with her stuff. OT is coming in for us at a point where she recognized how much she needed help, could verbalize her struggles, and could appreciate and implement the changes. I'm not sure we would have seen that when she was 6, kwim?

 

So I LIKE everything we're doing but don't think it's something I need to pay somebody to enforce and repeat every single week, kwim? Yes, we've done some listening therapy, just at her place. She has said we might bring some cd's home, but we haven't done that yet. She (the OT) let me listen along one one of the cd's, and it got rid of my headache I had gone in with. Weird, eh? So just that small experience told me it can do *something* when the need is there, when the time is right. We've realized that I have an auditory sensitivity, and the OT has hinted she'd do things for me along the way too. So basically we're BOTH doing the homework. :)

 

I hate the change therapy brings and the way we constantly feel like we're working on defects. It's just an inherent negative thought process, right at an age and time where you want to be NORMAL. But for us at least I'm comfortable we're accomplishing things she needs. It's not like it's nebulous. My dd's hand hurt SO MUCH with her school work that it was getting in the way of getting our work done. At that point I didn't need something general but something SPECIFIC, kwim? General toning via a sport wasn't going to cut it, because I needed to find the exact cause and get to work on it. If I could wrangle my dd to do the physical work with horses Karen's dd has done, I'm sure that would help too! Just haven't gotten her there yet. But we didn't even know what was wrong, why she was hurting, or how to help her, kwim? So for us the OT process has been as much about discovery and learning as anything.

Edited December 30, 2010 by OhElizabeth

[Leonor]

I've been reading about the iTouch and ipad and whatnot tonight. I didn't realize there's student planner software for the itouch/ipad. There are also calendar functions, etc. So we could set alarms, input lessons, etc. (all theoretically here, not sure exactly how) and let the device do our "get your butts moving" for us! I love this idea! So I'm trying to figure out how all this might work and whether it might be a great help or not. Certainly is nifty even to have the option.

 

Where have you been reading this? I'm trying to figure out how to set all these things on my boys' Itouch I got them for Christmas.

This is good for any person, especially teenage boys.

[PeterPan]

Try http://www.istudentpro.com I'm not sure it's any good, just found it mentioned on the boards.

[Guest]

There seems to just be no sure way to tell whether or not OT will help a child in a particular area. I'm sure I've said before how ours worked miracles in terms of balance and prioperception, but nothing the OT did -- and we did many of the same things you mention, Elizabeth -- made a difference in her use of her hands. It took the horse work to do that.

 

Dd still has the most horrendously maladaptive pencil grip; but it doesn't hurt her hand, she can write with speed, fluency, and even legibility for pages at a time. I have made a habit of looking at the pencil grips of waiters and salespeople and clerks everywhere we go, which has been amazingly reassuring in one sense: you wouldn't believe the contorted holds! But they all seem to function in their work.

[peacefully]

.

[PeterPan]

Ok, here's the problem I have with that list (even though it's none of my business, lol). Those things are activities, not categories, and there would be LOTS of ways to get there. Those leg exercises are all working on core strength. Sub horse riding and you've done the same thing. Wheelbarrow walking? Well that's fine, but push-ups would do it too and are independent. In other words, you could add push-ups to his morning (or evening) routine, just like toothbrushing or anything else, and he could get it done without you. The beanbag and ball thing sounds like she's working on arm strength. That's cool, but can you have a list of options and rotate through them? What about theraband? Is he too young for that? Lots less hassle, and it's something he can AGAIN do as part of a morning or evening self-implemented routine once he learns how.

 

The crab walking and knee walking I don't understand. She must have a goal, so I'd ask what it is. Moving feet??? He can do a martial art but can't move his feet??? I'll plead my ignorance again and just say I'd ask WHAT she's working there specifically and find more ways to do it.

 

Now the theraputty. We've done that, but there are other options too. You'll notice Karen's mention of how the horse work strengthened her dd's writing endurance. When you groom the horse, you work the shoulder. When you work the bridles, you're working the fingers. So it IS the therapy. There are more ways to get there. If you could ax half the stuff on that list by putting it to his independent work (push-ups and theraband every night before bed, his deal to implement), then you'd have 15-30 minutes of therapy a day to do with him. In that time you could do the theraputting (alternating with other cool options for variety of course), something for breath support (is that why she's doing the bubbles and blowing? there are whistles and cool things for this too), etc. If you could get it down to 30 minutes a day, it would be a pleasant break between math and LA, kwim? It wouldn't be so burdensome.

 

Now on the bubbles and blowing, they use that with apraxia treatment because the low tone kids don't have proper breath support. Is that part of what she's seeing? Our SLP had these marvelous, marvelous whistles with two stages, etc. My ds can't yet do them properly because he can't control his lips and instead holds them with his teeth, defeating half the purpose. *I* wouldn't mind doing things like that during the school day as therapy, because that sounds fun to me. You might feel the same if you weren't overwhelmed by that WHOLE LIST.

 

Ok, the swiping at balloons while on the trampoline. That's cool, but isn't that a vision thing? ;) We got that done at vision, so she isn't dealing with that. Hopping. What is she trying to do there? I see nothing for midline, which is what you were worried about and mentioned specifically. There's tons for working on strength and tone, but I can see why you're frustrated! I made my ds2 beanbags for Christmas, because I had read about using them in play to help with tone (sneaky therapy). But mine are way cool. You can make them too! My beanbags are too layers of heavy muslin serged around the sides and filled with about 20 oz. of dried beans! They're some lugging fellows! And I also took the adorable, adorable stuffed animals from the charity display at Kohls and filled their little butts with beans, another trick I read. I could weigh them, but I'm saying my animals are checking in at several pounds each. If you're throwing around beanbags with polypellets, they might not weigh so much as something you could make yourself, kwim? And with a dc that age, nuts I'd take him outside and teach him horse shoes!

 

Why does he need to catch the balls? My dd can catch perfectly well, now that her eyes work right. I keep picking on you, hehe, but seriously, I would ask those questions. I'm utterly lazy, so I want the max amount of result in the least amount of time and effort. If this lady is making you do tons of things that are actually for VT issues (which some OT's will do), then I might be happier letting the VT do that and taking the stress off me. If a little more weight or a tool you pay for will make your work time more efficient, you could do that. I mean sometimes I think they tell us to do things because they think we won't PAY for anything. We spend hundreds on curriculum, so another $4 for a theraband or even $100 for a swing to work on the vestibular is nothing, kwim? And I don't see the vestibular in your list at all. You mentioned you were concerned about it, and I don't see it.

 

I do think my OT is a bit nuts. Bit nothing, she's quite scattered, lol. But when we work with her I see her working specific categories of things and changing it up. So I know if I create a list at home that is working those categories, I can interchange anything she has done to that point and have more options. I know free weights or theraband or wheelbarrow were all trying to work the same thing basically.

 

You know the other thing is that your ds is coming from such a position of low tone, she may be trying to ramp up sensibly, kwim? You can push too hard and wear someone out. When I do these activities, as a person with low tone myself, I see my ability change with time. Are you seeing that with your ds? You went from 5 to 50 paces with wheelbarrow? That's ASTOUNDING!!! That's fabulous, that's progress. I wouldn't be discontented with that. I can see where you're feeling like it's taking a lot of time. Have you tried having an open discussion with her about what you see progress in and what you don't? Clearly you're getting results in some things. Clearly you're having doubts about others. Tossing SOME of the things doesn't mean you have to toss ALL. And it doesn't mean there wouldn't be some ways to modify the methods and make some of it more independent, putting the onus on him, not you.

[burleygirl]

My daughter is 12 and still struggling with Executive Functioning. Next year she will no longer attend her special school and will attend a standard private school. I am very concerned with how she will function. Her current school works on that and will have a transition class for her but she is not always very motivated.

[peacefully]

.

[Tiramisu]

Oh no, I am not discontent with our OT at all. We love her, and for the most part, she tries very hard to explain the purpose behind each of the exercises and therapies. I get it. Sorta. But it's just that there is no shift at all when it comes to stuff like brushing and TL. We do it or don't do it, and there is no appreciable difference to anything about ds, so why do it? And then when I try to get some research about those therapies, I come up against a wall. Lots of anecdotes, some positive, some indifferent. There's just not a lot there to motivate me to keep going with those.

 

And while there are plenty of other activities that can substitute for some of the ones on the list, these were just the latest set of exercises that we've had to do. The office sessions are very different, working an entirely different set of issues — vestibular, proprioception, motor planning, midline stuff, some visual-motor stuff, sometimes fine motor. She uses all of her toys and contraptions to have ds do some pretty cool things. But the primary benefits that we've seen from OT have been around tone and tolerance for vestibular instability. But yes, since we've done OT, ds has stronger arms, he can now do those leg lift exercises at 10 reps at almost full extension, he can run faster, etc. The most profound shifts with fine motor have happened recently, just as we're wrapping up VT. I just can't really attribute that change to OT. So if we're just getting the same benefits that basically physical fitness would give us, OT is a very expensive way to get there, you know?

 

And while I love the idea of my ds doing his therapies independently, that is so not my kid. :rolleyes: Our VT and OT home programs take at least twice as long as they need to because ds needs to be prodded and cajoled every step of the way. He can do more of his academic work independently, but not anything physical, except maybe riding his bike. He just doesn't feel inclined to move unless he's playing with other folks.

 

I think I'm going to be a much happier camper when we go to an every other week schedule and VT is done. VT is 3.5 hours away for us. We drive two hours to my folks house and spend the night there, then we drive another hour and a half to the office in the morning. After lunch, it typically takes us 2.5 hours to get back to my parents' house (tons of traffic heading back). Then we leave for home the next day. A trip to the VT office sucks up a full day and a half, sometimes two days, which is why I could only swing it if we did office visits every other week. Eight sessions have stretched out to 4 months for us, plus a bit more, since we're taking a break for the month of December. Getting to the OT office is a good hour and a half, round-trip. We spend more time sitting in the car than doing anything else. For us, our major time suck is the office visits, not the few extra minutes that we do his exercises together.

 

I hate sounding so negative. And in reality, I'm not. His VT and OT have helped him come a long way. I'm just at this juncture. We're about to finish VT, and we've been doing OT for a full year. I'm needing to reassess and think very critically about what we're doing. We've spent well over $5K on OT alone, so it's sobering to think that the main thing that we're getting out of that is stronger muscles. I'm a big fan of stronger muscles, but um... I didn't think that's what we'd be getting. Who the heck needs to spend $5K just for stronger muscles? I'm hopeful that some of those funds could be put to use in some activities that will help him see more people, learn some actual skills, and have a little more fun.

 

You are an absolutely amazing mom for putting in all the time and effort you do for VT for your ds, not to mention the money. You don't sound negative but the everyday reality of it sounds tough. There's no two ways about it.

 

I have to say we saw no benefit from OT. Of course, we only had only 60 consecutive days of therapy allowed by our insurance, so it was really too little to get a proper gauge. I couldn't justify the expensive of continuing after seeing what it actually was. I tried to continue some of what I learned at home, but I realized that a lot of what the OT was doing dd was getting anyway because my dc are really active all day long and incredibly creative when it come to thinking up fun games and activities. (Yes, they can be very hyper is what I'm trying to say but it's not all chaos. ;))

 

Dh really thinks the activity that has showed the most results for our dc is is kung fu. Besides the kung fu, the instructor includes strengthening and stretching exercises in every class and fun activities like obtacle courses, run the bases, round-about, running like crabs, scooting around on those little bases with wheels, punching and kicking against firm objects (not people) for joint compression, etc. Thankfully, it's close to home, we get a family rate, and the instructor goes to our church and does not incorporate any spiritual aspects that would clash with our faith.:)

 

Even though our dc played soccer this fall and I thought they were in pretty good shape, when they started up with kung fu again, they were really sore for the first week. To me that proved more muscles are used in a greater variety of ways than they were getting otherwise.

[PeterPan]

Wow yllek, that's a lot of driving! No wonder you're feeling burnt out!!!!!!!!!!!!! There was no closer VT doc that was good? I drive a long way for our speech therapy, so I totally know how you're feeling. When I drive to our speech, I drive all the way there in one long jolt, do the therapy session, then take our time coming back. Would it shorten things at all if you had say a mid-day appointment for the VT, drove all the way there, did VT, then drove just to your parent's to spend the night? Then the next morning you could drive back the rest of the way and still get in a fair amount of school.

 

I've got to tell you I'm really impressed with your OT. You can be impressed with my VT, and I'll be impressed with your OT. Your OT is doing all the same stuff ours is doing, PLUS she's creating a good home regimen for you. I wish ours was doing that! Ours is of this mindset that parents will screw things up, the expert should handle it. She funnels things and tosses us stuff to do, but it's very scattered. She's just a scattered person. That's actually why I'm a little concerned, because I don't see how once a week is going to get us anywhere at that rate, kwim?

 

Ok, is your OT anywhere near your VT (like on the way back) so that you could do it on that 2nd day when you're coming back? See if you got to VT by mid-day, had your appointment, spent the night at your parents, then could drive and do OT the next day, you'd have both things done in two days. Do that on Thursday and Friday, and it leaves you three days a week to be normal. As is, you're doing too much at once! That's just too much!!! I don't even know how you're getting the homework in, mercy. I've been driving 2 1/2 to speech and an hour to OT, and with that I told dh he was going to have to get someone to take dd to VT, even if it meant paying them. MIL stepped up to the plate and did it for us. When we started all this, KarenAnne here told me to limit it to TWO things, and that was including any therapeutic sports, etc. So all summer we did horseriding and VT, nothing else. Adding the third thing with speech is what shoved us over the top.

 

You could take a sanity break from the OT, focus on getting the VT done, then go back to OT. I mean you're already doing two things if you do that: martial arts and VT. Something needs to give. No wonder you're burnt out on therapy! It's not the therapy so much as the extended driving!!!

[AnitaMcC]

Interesting about your dd and swimming. Aspies often do well in swimming -- my dh and I met doing master's swimming, and my dd swam for years.

 

 

My Aspie Ds can't swim and swimming was something I was told that Aspies do well in-LOL.

 

He has had lessons for 2 yrs and still can't swim well. He sinks!!!!!!!! He can keep his head and shoulders up, but the rest of him goes down. I am wondering if it is because he has no body fat, he has no stamina, and his muscle tone is like a wet noodle.

 

But he is very strong... at least his Kung Fu instructor says that Ds's punches and kicks surprised him in how strong they are... way stronger. Ds hasn't knocked Sifu over yet... but he has made the Sifu shift back when hit by Ds. This was 2 yrs ago when Ds wasn't even 5ft tall.... Sifu is 6ft.

 

And his coordination is horrible. Ds finally learned to do jumping jacks when he was 13 yrs old. He learned to ride a bike when he was 11yrs old.

[AnitaMcC]

Yllek, your ds is or is not low-tone? I've been uncertain of how she'd do with things (like the aikido you mentioned), because some of the things we've tried wore her out, making it hard to do her school work the next day.

 

I suggest you do the IM and tell us what benefits you get. Then we'll decide. :)

 

 

My Ds is very low toned... low stamina. Kung Fu has helped him tremendously in this. His Sifu made sure that Ds didn't overdue it so he would benefit from the exercise but not get exhausted. Ds can now make it through the class without needing a break.. unless his asthma is flaring. Ds is an advanced red sash and doing great in Kung Fu. It is in Kung Fu that Ds learned to balance, to do jumping jacks, to do many things that before he couldn't do at all. Things that P.E. classes in ps didn't even put a dent into him learning how to use his body.

 

I highly recommend martial arts!!!!!!!!!!!!!!!!!!!

[Guest]

My Aspie Ds can't swim and swimming was something I was told that Aspies do well in-LOL.

 

He has had lessons for 2 yrs and still can't swim well. He sinks!!!!!!!! He can keep his head and shoulders up, but the rest of him goes down. I am wondering if it is because he has no body fat, he has no stamina, and his muscle tone is like a wet noodle.

 

But he is very strong... at least his Kung Fu instructor says that Ds's punches and kicks surprised him in how strong they are... way stronger. Ds hasn't knocked Sifu over yet... but he has made the Sifu shift back when hit by Ds. This was 2 yrs ago when Ds wasn't even 5ft tall.... Sifu is 6ft.

 

And his coordination is horrible. Ds finally learned to do jumping jacks when he was 13 yrs old. He learned to ride a bike when he was 11yrs old.

 

Dd only learned to ride a bike at nine, with the help of an OT. She still doesn't like it. Her vision problems with depth and peripheral vision have meant that the speed of riding terrified her. She probably could manage now that she's gone through VT and is riding and jumping horses, but she has no interest -- she associates bikes with the fear.

 

When you ds was learning to swim, did he go through a program for special needs kids? That's what made the difference for dd, I think, although she always liked water. She had a marvelous teacher and we stayed with the program for over two years. She topped out at the lessons but they let her stay on because she didn't want to do competitive swimming at all.

[rafiki]

.

[Guest]

It can take challenged kids YEARS to learn to swim. All three of my boys start swimming lessons the summer after they turned 3. We sign up for the entire summer of lessons usually 3-4 sessions (lasting 2 weeks per session) depending on where we lived at the time vs expecting progress after 1 session (I see it all the time). That means my oldest has had 8 years of 6-8 weeks straight of swimming lessons. Not your everyday swimming lessons either, we were blessed with wonderful instructors. One of whom is also swim coach at a local college, so bubbly, and positive. The other one who this past year gave the boys private swim lessons. Just this past year things really started to click. He has ADD, Dyslexia, Low Tone, and who knows what else.

 

I also began actual lessons when dd was a bit older -- I think we started when she was around seven. And we went year-round. Perhaps that also made a big difference.

[PeterPan]

Ok, we're tossing around terms here that don't quite mean the same thing. You can have muscle strength but not muscle tone. They aren't one in the same. So an activity (martial arts, swimming, etc.) might improve muscle strength but not muscle tone. The OT is working on strength, yes, but they're also working on tone.