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Okay. I need SOME kind of plan - working memory folks - help?


BlsdMama
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Please don't quote.  I'll delete later for privacy.

 

The details:

IQ - 91

Working memory - 4%

Profoundly dyslexic

ADD but NO H component

 

 

DS is a handful.  Am I able to deal with him effectively?  Yes.  But it's some kind of conflict ALL DAY LONG.

 

I have no doubt we have some kind of sensory seeking behaviours going on - oral fixation, constant thumb sucking, stroking of EVERY POSSIBLE TEXTURE in the entire house until it drives me a bit batty.

 

He works hard.... when he's enthusiastic about working.

 

We're through Barton Level 3.  He's got a FANTASTIC attitude about Barton, and, honestly, school in general.  But it's becoming apparent to him his sibs are passing him and it's causing anger and resentment.

 

He's incredibly impulsive and quick to be angry.  Better at controlling it these days.

 

At the end of the day, kiddo just requires an INCREDIBLE amount of work.  And, frankly, to the detriment of his sibs being able to function or focus without being drawn into an argument, a fight, a fuss.  

 

We took him to a neuropsych in October / November of last year for formal diagnosis.  She suggested drugs to help stretch his WM.  She said that while it's not much (3-7%) for him that would be HUGE.

 

But we moved at the end of November - cross country.  Spent six months living with parents while looking for a house.  Bought a house and moved in and settled in, had the new baby in August, DH had back surgery in early October and PT and ended up home until Christmas.  January FINALLY felt SANE and it's now February and we need a plan.

 

I need some kind of plan in place to CLING to that  will help us see some kind of "improvement" for him, for me, for behaviour issues that are becoming a problem.

He. Exhausts. Me.

 

We have a specialty children's therapy close to us that deals with ADD, Speech/Language, Sensory stuff.   Is this what I'm looking for?

What questions do I ask?

We've already been to his pediatrician and done everything for the referral there.  

 

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You want an OT eval with someone who is very good with sensory.  Could be a place that specializes in ASD or someone who is SIPT-certified.  You can find the SIPT list for your state and also the list of people who do IM (interactive metronome) in your area.  Those should give you some leads.

 

Combo places *can* be really good or can have really high turnover.  I suggest looking for an OT who has been doing it a while, someone with a commitment to getting good and working with sensory.

 

How old is this child?  Is there a reason the psych didn't recommend Cogmed?  It is much more effective for increasing working memory than meds.  

 

I would do OT to get him to a better place physically, then go back in when he's more stable and do Cogmed.  If you get a really good OT, they're going to have ideas to help you with structure, energy levels, transitioning, etc.  

 

Structure is the buzzword for these kids.  You can look up some of our past threads on it.  My ds is walking entropy too, so I feel for you.

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OT might work wonders. It won't fix everything, but if he's seeking so much, it should help. Some sensory stuff overlaps with anxiety, esp. as the kids get older. Anxiety can look like difficult behavior rather than worry, and if that is the case, fighting and having that big emotional release can be one way your child deals with stress (if that's what's happening). Not that tons of sensory seeking and impulsive behavior can't lead to arguing and such on its own, but it can be self-reinforcing to get that feeling of emotional relief after a big argument. Just a thought since that happened here a lot.

 

I would do what you can (and enlist the other kids if that works) to give him some serious sensory input every AM out of the gate. If he responds well to breaks, take sensory breaks (I have one that needs breaks for movement and one that we don't get back into the routine after a break). Whether he needs joint compression (jumping and crashing), spinning, rocking, or just lots of deep pressure, I would try to do a bunch of it before school. Make it one of his chores, and if it requires another child to help (our son likes having an exercise ball go up and down his body while he lies flat), make that a chore for another child. Deep pressure/heavy work is almost universally an organizing activity, but a lot of other activities arouse or calm on an individual basis. Our OT also recommended that the kids either have a stool or stretchy band to put their feet on if their feet don't reach the floor very solidly (or they can sit on the very front of the chair). A lot of kids are more distracted or fidget more when they don't have the sensory input of having their feet grounded. It also helps with postural control. Standing to do work might help if joint compression orients him toward his work.

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Cog Med - the closest is an hour and a half away.

 

We've been weighing whether or not we can make that commitment or not. :(    Three hours of driving for someone with no outside help and having to take along four children age 5 and under is a nightmare to me.  I'd be leaving the two oldest home to do schoolwork, then take 11yo, 10yo, 8yo, 6yo, 5yo, 3yo, 2yo, and 6mo.    I honestly can't imagine.  

 

We are thinking about it though.  Did I read correctly it's only five weeks?

 

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No, the Cogmed should be done at home on the computer.  It's totally online.  Was the person you called telling you to come in for every session???  Around here it's $1500, and that's an initial visit with some pretesting, the 5 weeks of Cogmed and supervision, follow-up visit, the maintenance Cogmed, and I think a 6 months visit.  So it's like 3-5 hours of the psych's time and then doing the Cogmed on your computer at home.  Distance shouldn't be an issue.  If the person isn't doing it that way, try someone else. 

 

My ds is in the gym for gymnastics four days a week, and that kills the sensory-seeking.  Doesn't eliminate the need for OT, but it stops the crashing, at least in our house.  

 

There is that Auditory Sequential Working Memory book you can get on amazon for $17.  It's useful, but at least with my ds just doing digit spans like that orally seems to be the LEAST effective thing.  For him, because he's so kinesthetic, what seems more effective is working memory in motion.  I'll give him a sequence of commands, which he has to repeat and then do.  Slowly increase that.  For school work, you're needing working memory AND motor planning, meaning it's in motion.  There's also a game A Fistful of Coins and the link someone else just gave http://www.speechlanguage-resources.com/working-memory-activities.html that is similar in approach but different enough to be useful as well.  

 

I guess the thing that confuses me is that Barton should have been working on his working memory.  I don't mean to pry, but are you doing all the steps exactly as she wrote them?  Do you require him to do every step exactly as she specifies?  All the finger tapping, pulling down, etc.?  I'm just asking, because that should be challenging his working memory.  Are you doing her phrase and sentence writing?  How old is he?  I'm just surprised he's not melting down.  Is he old enough that 4th%ile is still 4-5 digits and thus functional for Barton?  

 

Our OT put it that sensory issues are the 4 alarm fire making it hard to do anything else.  That's why Kbutton and I are both saying OT, because it's going to make it a lot easier to do the rest.  And if the OT does IM, you can weave working memory into your IM homework.  Dd didn't do formal IM, but we did Heathermomster's IM homework and added in digit spans.

 

I think you're going to want to do OT before Cogmed.  You're going to get a percentage increase with Cogmed, and you want him to be in his best position physically to be able to do it and benefit.  

 

 

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I only have experience with one child, but DD got really nice gains in her WM using computer based programs (from 47% to 68%). There are a bunch of them out there. There are exercises targeting auditory memory and visual memory. For auditory memory, Linguisystems had some resources, and there is also a really good book sold through amazon. I am blanking out on the title now, but it gets recommended frequently. Hopefully someone will post a link. There are also computer based games that help with that. Another part is visual memory. There are again a number of computer based games that help as well as old fashioned games. I used the following programs with DD:

* Audiblox (good for both visual and auditory memory, but time consuming)

* Brainware safari

* Brain Fitness Pro

* Earobics (only one game really helped with auditory memory, the rest of it was phonological processing)

 

I think Cogmed offers their own computer based program as well.

 

As a note, DD preferred working on a computer much more than working with me. As much as I tried, it was hard not to let my frustration show when DD had a hard time doing simple tasks (such as repeating 4-5 words in a row). My frustration caused DD frustration as well. Computer, on the other hand, stayed perfectly neutural, even when she got 20 items wrong in a row. Also, all the charts that showed progress were a HUGE motivator.

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I guess the thing that confuses me is that Barton should have been working on his working memory.  I don't mean to pry, but are you doing all the steps exactly as she wrote them?  Do you require him to do every step exactly as she specifies?  All the finger tapping, pulling down, etc.?  I'm just asking, because that should be challenging his working memory.  Are you doing her phrase and sentence writing?  How old is he?  I'm just surprised he's not melting down.  Is he old enough that 4th%ile is still 4-5 digits and thus functional for Barton?  

 

Our OT put it that sensory issues are the 4 alarm fire making it hard to do anything else.  That's why Kbutton and I are both saying OT, because it's going to make it a lot easier to do the rest.  And if the OT does IM, you can weave working memory into your IM homework.  Dd didn't do formal IM, but we did Heathermomster's IM homework and added in digit spans.

 

I think you're going to want to do OT before Cogmed.  You're going to get a percentage increase with Cogmed, and you want him to be in his best position physically to be able to do it and benefit.  

Ah HA!  I thought so Barton was stretching his WM!  I actually didn't know how possible that was.

 

Honestly, we had access to Barton workshops put on by our homeschool coordinator,  a trained OG specialist who is certified in Barton.  Had training and "practice" workshops for Level 1, 2, 3, and 4.  It was fantastic.  Then she came to our home to supervise, check in, and make suggestions so I'm absolutely certain.

 

He doesn't melt down AT ALL.  He used to get very sullen.  Frankly, the lessons were too long and I'd get frustrated because he would "zone" and he could hear the tone in my voice, then he was done.  

 

It is taking us much, much longer to get through a level, but we're doing shorter lessons and more repetition and it's sticking.

 

When I started Level 1 I told the teacher leading the workshop I didn't feel there was ANY way he could do it.  There was no way he could "carry" remembering what sound the tile (without a letter sound) was and work with it in order to do Level 1.

 

It took work.  But he did it.  

 

Level 3 is relatively easy for him in that he's not struggling.  We still must do shorter lessons than my other two can handle and we repeat more, but he IS getting it.  

 

He absolutely thrives on the one on one of Barton.  

 

I absolutely know there is also some kind of auditory / kinesthetic link because he has learned far more than he should know.  His room is set up with various lego sets and a table and a CD player.  We have "read or sleep" afternoons and he goes in there for the two hours and listens to audio books.  We keep them fairly advanced and he is absorbing it.  He and the girls go in there in the morning for SOTW on audio.  It seems that he absorbs more when his hands are working.

 

 

He's 10.

 

 

At the eval he was almost 9.   The neuropsych said she was shocked that he was reading as well as he was.   (This was before Barton, but he wasn't my first dyslexic, we just didn't know the other two were dyslexic.  We just found ways to get them to read.... without a formal curriculum. Turns out we were doing some things very right.)

 

I hate to be so down about him.  He's a great kid.  But some days the walls seem so tall and we seem so insufficient to help him climb.

 

I called the Therapy place today and they said he'll need Occupational Therapy.  I have the referral from his ped. and his neuropsych eval.  So I guess we're started on the right path.  There is a waiting list for now and they'll call soon with an appointment, probably in early April.

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Oh good!  If you can get OT, then maybe in 3-6 months he'll be in a position to do something like Cogmed.  I also like NYmom's list of things.  Cogmed has the money behind it to get research, but that doesn't mean the other things don't help. There's the question of whether they help as much, but doing multiple things like that certainly stacks the benefit.  If you don't have time/energy for that, Cogmed is the all in one with the research behind it (and the price, oy).  I did a little looking into Audioblox today, but I never figured out what it actually costs.  Their site is a little confusing.   :(  I would think audioblox would be young for a 10 year, call me crazy.

 

Cusamano was the author of that working memory workbook on amazon.  The other link I shared is too young for him.  I did the Cusamano book with my dd with metronome work, and that was good.  I just felt with her like it was dog and pony.  If you don't get the skill into CONTEXT and IN USE it's not going to stick.  The working memory gains you get by forcing him to do all the mental work of Barton are giving him real, functional gains.  He's able to use his vision, talk, motor plan, process, and use working memory.  When you just recite digit spans, it's really not reflecting all that, kwim?  So I haven't checked her in a while, but I think when I checked her at say 6 months after, she had lost some digits.  That means that what we did in isolation wasn't getting carried over and really USED for her school work, etc.  And I don't have time for that, kwim?

 

So that's why, with ds, I'm thinking more in terms of in context.  

 

If your OT does metronome work, that would be fabulous.  Will you be paying for this?  OT is sort of the never-ending pit.  It's helpful, but oh the price!  So if you're paying, it's something to think through.  (whether you want a homework model, how often you can afford to go, etc.)  I wish with dd I had found someone who would have let us come just once a month and done more at home.  For her that would have been fine.  The person had this complex and thought if you did anything at home you'd ruin them.  Seriously.  I was paying $100 an hour and I could have bought the equipment and done it myself.  She too was that age (10, 11, I forget) and when they're that big they just use certain things.  

 

I'm just a little jaded.   ;)   I'm all in favor of OT, just saying look out and think it through.  

 

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And therein is the question.  I called insurance today.  It is through an in-network hospital so they'll cover the initial evaluation.  After that it depends.  We did the neuropsych stuff out of pocket.  
I don't even want to think about the cost right now.  I think I shall shove my head in a hole until the time comes to really run numbers.  Not a good plan.... But on the day I finally finished Ana's FAFSA, and got last week's ER visit bill, I think it's the best plan at least until next Monday.

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Our OT was all about setting us up to be successful at home. Yes, they have the big equipment, but it was all about, "you can do x and y at home, and it will give similar input." 

 

Working memory is pretty dependent on mood and well-being. If he has a lot of distraction from sensory, his WM is going to be very taxed. OhElizabeth told you all that, but I thought I'd use different words to restate it. :-) 

 

Good news about the auditory stuff working so well. I have one that takes input really well that way and one that probably has CAPD. Use those audio books all you can! Consider things on video that he can watch while doing something with his hands. My strong auditory learner is very visual too, and he loves documentaries of all kinds. He's been watching This Old House since he was tiny, and he can do all kinds of stuff as a result.

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I wanted to add more info on Audiblox. It was about $200 when I bought it 5 years ago. The program is fairly simple and can be done with a child as young as 3.5-4. My DD was 6-7. The bulk of exercises is done with colored blocks: remember the colors in order they are read, the pattern made, random string of blocks, etc. Knowing colors is the only pre-requisite. I thought the program was great at building attention and stamina for work requiring concentration. There were other exercises helping with directionality, B/D confusion, handwriting. As Elizabeth pointed, gains don't translate perfectly well on school work, but they do show up. For example, my DD could reproduce a string of 20 colored blocks after looking at it for 20 seconds, but she definitely could not remember 20 random numbers after looking at them. Having said that, she went from struggling to memorize her addition facts up to 20 for 6 months to learning all addition/subtraction within a month and then multiplication/division with minimal drilling within a couple of months. This was a child who took 3 months to remember that +1 really means the next number.

 

 

I don't want to give an impression that Audiblox was the only thing that helped. We did a bunch of different programs over a course of 5 years. It's hard to point to one that has been most helpful. Personally, I've always been distrustful of any program that is charging $$$ bc there is just too much money at stake for objective reporting and "research." But I was open to trying stuff at home for a few hundred dollars. I've seen some really good programs for building up memory, so I think you could definitely work on it without paying huge $$$ to Cogmed

 

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