Retention.

Have you heard someone tell you your child has “mastered” a skill or program?  I hear that all the time.  At first, I thought that was cool.  He could now move on to more complicated information.  Then, I started learning how “mastering” didn’t take.  It wasn’t working.

Here’s an example.  Recently, my son’s ABA tutors did a “program” called “more and less”.   They would give him a number and ask him to give a number that was either more or less than the number given.  He preferred to go up and down one digit.  They tried to broaden his understanding by saying, “Great, now give me another number…” and he would then go one more digit up or down as requested.

Last week, we sat down to do homework.  There were six “problems” with numbers side by side, each in its own box.  He was told to circle the number that was more than or less than.  He got every single one of them wrong.  So, there you have that skill – NOT mastered.

I read a post from an adult with autism about the way she processes information.  She tells in incredible detail about how much input she experiences simultaneously such that some of it is discarded by her.  I think my son does the same thing.  He focuses on what he finds important and discards the rest.  The trouble with that is that he is not an adult, like the blogger above.  He needs to know very basic concepts.  He cannot discard “more versus less” in favor of the last episode of Spongebob, even though he has great memorization skills.

At first, I was mad at ABA.  What kind of crap were they trying to feed me about my son having “mastered” a skill that he dumped from his hard drive less than a month later?  Then, I read a post by Rhonda at Going Insane, Wanna Come? that made me think more about the subject.  Rhonda is rightfully angry having discovered in a few days of homeschooling her son, that the school that failed him in retaining some basic skills and failed to get him the neuropsychology evaluation that he should have had to help do it years ago.

Our kids struggle.  If they show us they have learned something, only to “forget” it shortly thereafter, what was the point of learning it in the first place?  Did my son really learn it – or learn the way to manipulate his way to the positive reinforcement?  Looks like it was (b) and he fooled his tutors in the process.  How superficial are the results of ABA?  And what can neuropsych do that other programs can’t?

As a lawyer, I have had rare occasions where a client is subjected to a neuropsychology evaluation to determine the extent of an injury.  I never put together that a neuropsychology evaluation could be an educational tool to help my son learn until I read Rhonda’s post (and Jen’s comment after) and started searching the internet.

The first thing I needed to know is what is a neuropsychology evaluation.  The definition that was easiest for me to understand was this one:

Neuropsychological evaluation is a specialized psychological assessment that includes systematic, comprehensive assessment of cognitive functions, including:

  • Intelligence & problem solving
  • Attention & executive function
  • Language & auditory processing
  • Memory, & learning
  • Visual-perceptual & sensorimotor abilities
  • Academic achievement
  • Emotional, & behavioral functioning

This website also said more good stuff, like this:

“Neuropsychological evaluation has been classically used to assess the cognitive consequences of brain injury and neurological problems.  It is, however, also an excellent tool for ascertaining the underpinnings of learning difficulties and other childhood disorders because it identifies specific intellectual strengths and weaknesses. For example, a child with a superficial attention problem may have an underlying difficulty with language. Or a child with a superficial problem with memory may have an underlying difficulty with attention.  Sometimes there is an interaction between more than one area of difficulty. Therefore, systematic evaluation of more than one area of cognitive functioning is often necessary in order to “put all of the pieces of the puzzle together.” Besides deficit areas, a neuropsychological evaluation also indicates areas of strength that may be useful in remediating learning difficulties.

Neuropsychological evaluation provides comparison between areas of functioning, as well as comparison of the individual cognitive domains with general intellectual functioning.  Additionally, it provides rich and detailed information about strengths and weaknesses within a particular area of functioning. This information can be extremely helpful for educational planning.”

So, the neuropsych evaluation sounds like a pretty powerful tool that should be given to all of us with ASD children to help plan their educational paths.  But, as with any tool, we have to be careful what we request.  Often, if the school district gives us one, it is because they have someone on the payroll who is not properly credentialed, or who is bought and paid for by the school to decrease costs for the district of funding programs for our kids. Thus, we won’t get an honest and independent evaluation with a good planning guide.

No one has ever suggested a neuropsych evaluation for my son to me.  I wonder how much it costs.  The website I referenced above does not bill insurance or take insurance.  It is private pay.  As I recall from the billing done in some old cases, I think it runs $3,500 to $5,000 for the assessment and report which included a short section on planning recommendations.  I’m quite sure the school district won’t be recommending this for my son.  I think you know who will be recommending it.  Yeah – me.

Meanwhile, I’m seeking it through our health care provider’s referral as well.  Just mentioning it here, as a possibility for others, like me, who were unaware of the benefits it might provide.  Now, go get ’em!

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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13 Responses to Retention.

  1. I’ve never heard of someone having to pay out of pocket for this. To my knowledge, this is the school’s responsibility. I may be wrong..

    I have a feeling this is going to turn into something huge. A development of sorts. I’ve called everyone i know. (parents of teens) and most all of us are going through this. It’s made me re-think regressions. Was it ever really “regressing”? I’ve now reconsidered MY definition of regressions.

    A mom said to me yesterday “we already know its happening.. it’s been happening for a long time. It’s a matter of someone coming up with a way of HELPING this”. Something tells me its something bigger. Maybe I’m paranoid. I dunno. I’m in “freak out” mode. At least we’re going through this together 🙂

    Tomorrow part 1 of the eval begins.

    • solodialogue says:

      The school should pay. Along the path to understanding, I found that there are situations where the school offers to pay and chooses the evaluator. The evaluator is not always a clinical psychologist trained as a neuropsychologist but merely calling him or herself such without the academic credentials… What a surprise that the school might try to get someone to issue a biased report. I don’t think you are paranoid at all. THis is a BIG something. The more we talk about it the less “freaky” it becomes. You are amazing, mama – to share and teach by writing. You are helping everyone and we are grateful! 🙂

  2. AJ has some form of this, although his tends to be more with very basic language skills. He only has 20 or so words in his vocabulary at any given time. He’ll use those words over and over again, often in the wrong way, only to forget them and move on to a new set within a few months. The professionals swear that the words he once knew are still in his head, but if he refuses to use them (even when highly motivated, (for example, repeating “please” to get M&M’s) how can they really claim that?

    It’s like there was the initial regression, and ever since then it has been a small amount of progress followed by loss of those skills only to replace them with more “progress” (at least that’s what the schools call it). Very, very frustrating.

    Headed over to read Rhonda’s post now.

    • solodialogue says:

      I really wondered after reading what Rhonda wrote and researching the issue, how much is what we parents have been terming “regression” and how much is “retention”… It is frustrating but I sure think that talking about it with each other helps. xoxo

    • Its called raw memory. When you repeat repeat repeat.. you get that repetition that will GIVE you that raw memory. This is how our kids are able to script entire movies. By watching them over and over and over. LEARNING this way, there’s no emotional value to what they’re learning. But, HOW do you teach reding comp. this way?! Of course give them things that they’re actually INTERESTED it… but when it comes time to crossover this stuff.. and they’re reading … say… directions for a JOB. I don’t know how in the world this is going to be done. VERYYYYYYYYYYYYY frustrating.

  3. blogginglily says:

    our wrap people still work on mastered skills so that they “stay mastered”, but I don’t know how long that maintenance work continues. Obviously they want to build on mastered skills and that building process implies some amount of maintenance.

  4. Lana Rush says:

    Our ABA therapists continue work on “mastered” skills to ensure that Lily is really and truly learning them. Every time they put together a new program sheet for her, a couple of “mastered” skills are on it as well.

    But here’s what I think: many times Lily may have “mastered” a skill, but it doesn’t generalize out to any other setting. Like she may brush a doll’s hair at the clinic but she doesn’t do it anywhere else.

    Also, I’ll mention sometimes that I don’t think a skill has really been mastered and they ask me if any other skills have “replaced” that old skill. Huh?? Like if she learns to count to ten she might forget how to use a spoon or something?? Learning new skills should not mean that old ones are then totally replaced.

    I’m going to read all your links now. But I’m not going to lie, this stuff is making me a little nervous. Always something new to discover and decide what to do now…..

  5. Grace says:

    Once again, something completely weird is going on here.

    Just last night, probably while you were actually writing this, I was in our peds office having a conversation with our nurse practitioner, who is also a special needs mom, about getting a neuropsych eval on my son. She was surprised that we had never had one and strongly encouraged me to get one. Our Dev Ped feels that a neuropsych eval probably won’t shed any new light on my son or alter her treatment plan for him, but our NP feels it’s important to get it for his education, not necessarily his medical treatment. She also made the point that at some interval down the road the school district will require an updated psych eval to determine if my son remains eligible for special ed services. If we get a neuropsych done now, on our terms, that will be ammunition in my file if the school district hires some quack to do a half-baked eval on my son that serves the school district’s best interests.

    And then I check my email this morning and see this post about neuropsych evals. I think the Universe is trying to tell me something. Cosmic.

    And, yeah. Our Dev Ped told me that most insurances won’t cover it and it would cost me about $4,000 out of pocket.

  6. Broot says:

    I wonder if it has to do with the growth and attachment of the synapses… you know, the links that get thicker every time you learn a specific skill, idea, or technique. Could it be that the synapse links don’t thicken the way they are supposed to as the children learn? Or perhaps that the stuff that coats the axons isn’t right? Maybe the axons get waylaid and don’t stay connected to the proper synapse?

    And how much of it is that the child just isn’t ready to learn some things? There is a huge scale in learning for math concepts even in NTs. For example, my daughter still has trouble with the concept of before and after… Ask her “What number comes before 18?” and she might say 19, or even just a random number. Even after we’ve talked through it together. She’s 6. Of course, that’s using your math example. Using words like “please” is another thing altogether.

  7. Again, awesome post. Thanks for all the info!

  8. Teresa says:

    When my son was young we often ran into the issue of who should pay for an evaluation. Was it educational or was it medical? As you can imagine nobody wanted to pick up the big bills.
    I know it varies by state but isn’t autism now a medical diagnosis covered by insurance in many states? No matter, as parents you must fight and fight some more to get the best care for your children. Stay strong!

  9. eof737 says:

    Pity it is not covered as it might offer some insights and useful recommendations… Fascinating.

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