neuropsychologist report for difficult child 3

Discussion in 'General Parenting' started by Marguerite, Apr 15, 2011.

  1. Marguerite

    Marguerite Active Member

    We had difficult child 3 assessed two years ago by a dream of a neuropsychologist. Well, I've been increasingly concerned over the last year or so by his increasing inability to cope with his already reduced school workload. Last year he was studying English, History & Geography - challenging for an autistic, so we blamed a lot of the problems on the curriculum material. This year - all his favourite subjects. Science subjects. It should be easy but it's not. First term (of four) has just finished, it's been a huge struggle with about one weeks' worth of work done for each subject, instead of 10 weeks' work.

    So we have done several things. First - I organised a repeat assessment. She has not done a full assessment but instead focussed on the problem areas, in more detail. The result - brilliant in terms of valuable information that we can use.

    Second - we got the doctor to increase the medications. It took the second increase, to four tablets a day, to finally tip difficult child 3 over into some level of function.

    Third - I contacted a private tutor who specialises in kids with learning problems and coaches in study skills. They were only waiting on the neuropsychologist report to get started.

    The neuropsychologist rang today, prior to sending her draft report. She needs to tweak it after talking to the school (she asked permission but the school is working with me in this - this school is marvellous, I wish I could clone them all and send them to you).

    Gist of the report - for non-verbal problem solving, he's in the top 1% of the population. Two years ago this was the same.
    Verbal skills - two years ago he was in the top 5%. Lower than the other areas but still good. The gap was noted. Now - much worse. MUCH worse.

    His scores range from 2nd percentile to 99th percentile. A HUGE range. Splinter skills plus plus.

    Executive function problems much worse. As long as the tasks were visual, he did brilliantly. As soon as he had to rely on auditory recall he began to falter. Trying to organise his thoughts into logical sequence - that was a very low score.

    So it is no wonder he is having huge difficulty with any writing task more than a line or two, even when dealing with topics he is familiar with. But he is now having to perform at senior high school level which is almost equivalent to US college level. And he just can't do it.

    Now we have evidence, we will see what we can do from here. But it is a big drop in just two years.

    We see the pediatrician in a couple of weeks. The draft report will be interesting for him to see. By then I hope to have the study skills tuition started, and a return to speech therapy targetting specific areas of executive function.

    Meanwhile - the school year grinds on and difficult child 3 is just not keeping up. I talked to him today and explained how he is going to need help and he will need to really work with this help, in order to give his brilliant brain the best chance he can, of achieving what we know he is capable of. We may need to reduce his workload this year still further, in order to get him through the work. It is almost certainly going to need to be modified.

    We have another week or more of school holidays, but I emailed the SpEd and Year Advisor anyway. I know at least one of them is checking emails over the break.

    What had me really worried before we increased the medications - difficult child 3 was working on his Physics class notes. The work showed a standard sine wave on a graph. All measured out, labelled etc. The first question said, "What is the wavelength of this wave?" All he had to do was read off the number. But he just sat there looking at it. "I don't get it," he said. I don't understand what they want."

    "Wavelength." I said. he looked puzzled. "Wave... length."
    He snapped at me. "Stop making it complicated!"
    I described a visit to the beach, said if he could take a 3-D snapshot and freeze it, then go into the water with a tape measure, how would he measure the wave length? It's the length between the wave crests, I said. or wave troughs - from the same point of one wave, to the same point on the next. He seemed tog et it, then returned to the diagram and said, "How do I do it here?"

    "Wave... length." I said again.

    When we saw the pediatrician, to ask for an increase in medications, difficult child 3 was getting exasperated with me again. "I would be able to do it better if she didn't make her explanations so confusing!" he shouted.
    I just looked at him and said, "'Wave... length.' How is that complicated and confusing?"

    He had the grace to look sheepish.

    And now we have the answers we need. Not the ones I wanted, but the ones I feared.

    Part of the problem is simply his brain not maturing evenly, and parts racing ahead while other parts lag behind at elementary level. Part of tis may be able to be remedied with remedial help, but a lot of it, we just have to wait until his brain matures. Now we have to work out how much we can help, and how much we have to wait. And if we wait - what do we do with him in the meantime?

    As he's been getting more frustrated, he's also been getting more violent. he physically attacked me while we were away. He also verbally threatened me yesterday, but I responded to tat with, "Threaten me again and I will all the police. You are 17 - too old to do that and not face the consequences. Threats are very inappropriate and not a coping strategy, ever."
    To his credit, he stopped. But it is another indication of how much he is struggling.

  2. HaoZi

    HaoZi Guest

    Wow Marg, I'm sorry he's getting physical with his frustrations. They have more suggestions on ways to help him yet?
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    He actually sounds like a fine young :)

    You are fortunate that he is SO intelligent. That really helps!

    Unfortunately, my son is not so lucky, but I hope your son gets the help that he needs :)
  4. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    I know you suspected most of what the report results indicated. Like MWM, I agree that his intelligence is a plus in this case.

    I would imagine that his increased frustration is a direct result of his inability to grasp or react to certain situations. But you have drawn the line in the sand which is what we always tells others to do!

    You are a great mom.

  5. Marguerite

    Marguerite Active Member

    Thanks, guys.

    I think his increase in violence is directly related to his frustration, which is connected to the inability to use that brain of his. We've been putting pressure on him to get his schoolwork done and he just can't cut it. It's like a brick wall has been built around his brain and he's got some sort of intellectual 'locked-in' syndrome. Or perhaps more correctly, "locked out syndrome". Information and knowledge hasn't been getting in, and now we learn that his ability to sift relevant information from the vast scope of data in his world, is minimal. He just spent two weeks working exclusively on a one week open book assessment task on a topic he should be able to talk about non-stop underwater for two hours, and came up with - one page. It's a subject he should be totally blitzing, but he's failing it, despite trying really, really hard. And every other subject is the same.

    We'll organise study skills, organise speech therapy, but I am very much afraid it will do little to help. The only other thing I can think of is to cut his workload back even further. But there is a limit to how far back to cut it - he has five years max to pass his final school exams and the clock starts when he sits the first exam. If he can only do one subject a year, he won't be able to do it because there are six subjects. Mind you, most students do it all in one year.

    I can't wait for school to go back so I can have a really heavy talk to the SpEd.

  6. pepperidge

    pepperidge New Member

    just out of curiosity , what does he do when he is not doing schoolwork? Is there anything he can do brilliantly right now even given all his deficits? Just out of curiosity what is the importance of finishing his exams? Do you see him going to university?

    We are trying to figure out what to do with our oldest who is bright but just not a student. We're trying to push through to the end of HS to get the piece of paper but it is a struggle.
  7. TerryJ2

    TerryJ2 Well-Known Member

    Oh, dear. As I read your note, my heart and gut were going up and down just like your waves!
    He sounds so intelligent ... and I'm sure that's where a lot of the frustration is. Plus, so many kids think they should just "get it" with-o having to work at it. Although again, maybe that's because he is so smart and some things have come easily.
    I am sorry that he attacked you but so glad that you were able to handle it well.
    I have no clue about the medications. I'm glad your neuropsychologist is a dream.
    He is SO lucky to have you as a mom!
  8. Marguerite

    Marguerite Active Member

    Thanks, guys.

    pepperidge, our schooling system is set up with two levels of exams in high school - School Certificate (Year 10) and Higher School Certificate (Year 12). Increasingly, there is very little you can do career-wise without HSC. However, those wanting to do a trade can do it as part of their HSC. difficult child 3 is doing some trade courses in computing. He is very good at technical things especially in a practical way. If there is a problem with the computer, he can generally fix it.

    When he's not working on schoolwork, difficult child 3 is playing computer games of one sort of another. His Nintendo DS is welded to his hand. Other activities - he was playing tennis, but the tennis coach is currently taking a very long break from it. difficult child 3 used to go for bushwalks but has stopped this lately. He also hasn't done much photography lately, and he is talented.

    Last year difficult child 3 completed the first stage of a college course in computing. He did it as part of his Year 11 work, this year he is supposed to be doing the next stage but has done practically nothing so far even though it is his best subject. I think it's because the sort of tasks they ask him to do are not the practical "fix this" kind, but the sort where he has to write a paper on which kind of computer is most suitable for this kind of business, and why. Language again - he's just not coping in this area. I hadn't realised it was tis bad and it was difficult for me to explain the problems to the school because I haven't fully understood it myself.

    difficult child 3 wants to finish his schooling. He had hoped to go to uni, even if he had to do the college courses first in order to get a head start at uni. But he hasn't a shred of hope if we can't get this problem sorted. It will be purely hands on practical work for him, despite his intelligence. A crying waste.

    The piece of paper from school is useful, even if only for the individual to be able to say, "I achieved that."

    We've got a lot of work to do, decisions to make. I want this kid to do well. One possibility could be an apprenticeship in electronics. If I could find someone who could take him on. Having completed SC, he is eligible for an apprenticeship. But the government is trying to bring in a law that says every student has to get their HSC. Even the Downs kid in difficult child 3's drama class, a girl who is only just able to read picture books, will get a modified HSC (FWIW) in life skills. Already, difficult child 3 has been downgraded to Life Skills maths. A kid who did SC Maths at the highest grade! It's just plain wrong.

    If I could only get him a job as a tester of computer games...

  9. ML

    ML Guest

    Wow, you have a brilliant young man there. I am so glad you got such a vaulable report. Sorry that it confirmed your fears but better to know for sure so you can move forward towards getting him the help he needs.

    I have to relate to your wave length story. Manster's teacher, after 5 months of thinking he was one of the best students and not understanding why he had a 504, suddenly had that lightbulb moment. He wrote me this email telling me that manster was struggling with the simplest of things. He told me a story that had him astonished and exasperated. He said we were having a session about preparing for middle school next year and we explained instructions several times and they should have been clear as crystal. He said manster was looking straight at him but 5 minutes later he asked him how do do the very thing that was explained in what he thought were the simplest of terms. He said I *know* he heard me. So once again I had to try and educate a teacher about his learning challenges.

    Oh if I might ask, what is the medication he's on and have you noticed any improvement at all since it was increased? I will say that the Ritalin has helped to some extent but he is only on the 8 hour dose and I'm sure with the increased demands of MS next year he will need to have the second pill.
  10. pepperidge

    pepperidge New Member

    Marg--I asked the questions about schooling because it is a bit similiar to my son. His therapist says that she thinks he will be a late bloomer--but maybe still not a uni student. I used to think he would go to community college and get a trade degree (auto, welding) but right now I don't know if he could even hack a structured schooling in those subjects at this point. We are thinking now about how to keep him positively engaged in life while his brain catches up--maybe that is the challenge for your son if those brain functions will eventually catch up. It is kind of hard to think out of the box--and particularly to think about how they can be constructively employed.
  11. Marguerite

    Marguerite Active Member

    I agree with you about sometimes the brain needing to catch up. I've seen a lot of improvement in difficult child 1, simple as he gets older.

    Your community college sounds like our TAFE, which is what I talk about when I mention "college". People (any age) attend TAFE and can get formal qualifications including school qualifications in later years. Sometimes these qualifications can be used to give "recognition of prior learning" into a uni course. SIL1 did this - he got 18 months off his uni degree (basically, his entry level was halfway through 2nd year uni) because he had done so much at TAFE. So far difficult child 3 has Cert 1 in computing from TAFE, although he did this as part of his schoolwork last year. He's currently enrolled in Cert II through school.

    We also have what we call community college - non-formal qualifications only. You can do courses in flower arranging, creative writing (I've taught tat at community college level), woodwork etc. People do these for personal interest and sometimes as a bridging course towards starting a more formal qualification course.

    When difficult child 1 finished school, I told him he had to either do a course, volunteer somewhere or get a job. A job seemed impossible, so he did the course plus the volunteer option. As for volunteering, you can generally find somewhere, even if you have to invent a placement. I might have to do this with difficult child 3.

    ML, medications - the kids take dexamphetamine. This is prescribed as a 5 mg short-acting tablet, but it can be privately compounded into a 10 mg long-acting tablet. It costs us about $1 a tablet. We found that dex works better than ritalin for our boys, because they both get rebound on methylphenidate. difficult child 1 only took ritalin, never Concerta (it wasn't available for us back then) and we found rebound was too serious a problem. He did so much better on dex that when Concerta was offered, he refused.

    difficult child 3 wanted to try Concerta, but it wasn't doing a good enough job. Turned out the dose was too low. But as we increased the dose, rebound got worse. One weekend we went away to visit family and had forgotten to pack his Concerta. husband & I each had a stash of spare dex tablets with us, we pooled what we had and dosed him with those over the weekend (rationing them) and found, even on the lower dose, his behaviour and everything was so much better. So we switched back to dex. Current dose, that seems to just barely help him work, is 40 mg dex in sustained release form. We do have a supply of short-acting tablets if we need a fast boost (such as taking his morning dose later than usual).

    We also at one point tried Strattera with difficult child 3. Total disaster, we took him off it after three days.

    I still haven't had the chance to talk to the speech therapist about difficult child 3's results. We spoke briefly yesterday, ironically we were on the same stretch of road, she must have passed me while I was stopped to send her a text message! Because our route takes us out of mobile phone range, we only had a short call. We'd been playing phone tag all afternoon. I don't expect to get the chance to really talk to her, until Monday.

    I'll let you know what happens.

  12. susiestar

    susiestar Roll With It

    That is a big change in his abilities and that range of skills is amazing. At least now you have a better idea of what his brain is doing. It sounds like some areas have regressed instead of improving and developing as he ages. I don't know if this is true or is me not understanding clearly. If he has lost some abilities, or thinks he has, it will very likely trash his opinion of himself and what he can do.

    The violence is most probably due to the frustration. When Wiz was on the verge of a big leap ahead in things, esp in use of language and in reading and reading comprehension, he would be much mroe violent and snappish and unable to tolerate sensory things. It must be even harder for you because your difficult child 3 is the size of a full grown man most likely. The way you told him you would call the police because it isn't ever acceptable was exactly what he needed. I used to run into people, even teachers and principals, who would try to convince me I should be making excuses when Wiz was violent because he was frustrated. "He can't help it because he is so frustrated and has a disability" was something I heard ad nauseum, esp the year he was at our middle school (6th grade). My response was always that he has to function in the real world regardless of his disability - and no one in the real world is going to let him get violent and ignore it because he is frustrated. It was esp hard because they told Wiz what they told me, and that poor him to have a mother who "refused" to understand.

    Is there a way to organize his thoughts that worked years ago that you could re-introduce? It might help him again maybe. It sounds like you have a lot of good things set up for him. They may have to adjust the rules to allow him to get the HSC if that is possible. It sounds like his brain development is very uneven. Hopefully this means that eventually it will all catch up and function on about the same basic range.

    What does one have to do to get a job as a game tester? Why don't you help him start sending emails to game companies to try to get their attention and ask them what qualities and qualifications they look for in a game tester and how one applies to be a game tester. I know husband was always testing a beta version of software and games for many years, though I haven't a clue as to how he found these things. I don't think he got paid but really ahve no idea.
  13. Marguerite

    Marguerite Active Member

    When I had my detailed talk with him, I pointed out that he has to stop trying to do it all himself by instinct, and start using resources.

    Susie, I don't know if he has actually regressed in some areas, of if he simply has failed to develop there, but has continued to develop amazingly in other areas (especially non-verbal problem-solving). Because of his age, the testing procedure had to change, so to a certain extent it's comparing apples with oranges. Only the degree of discrepancy is now much more obvious. And it couldn't have been so un-obvious two years ago, simply because the tests were different.

    He's still not full-size. He's probably full height, but still very lean and wiry - looks almost pigeon-chested, scrawny and nerdy. He's always looked like Harry Potter (at every age) so think of a slightly scrawnier Daniel Radcliffe with glasses and a five o'clock shadow. He's trying to get fitter and gain weight - he's about 55 Kg (120 pounds) at the moment, all of it muscle and bone. Not a scrap of spare fat on him. As we say here - "there's more meat on a butcher's pencil."

    He's shown absolutely no violence, either physical or verbal, since I told him that such threats are taken seriously by the police. I hope the message has got through.

  14. confuzzled

    confuzzled Member

  15. Marguerite

    Marguerite Active Member

    I mentioned this to difficult child 3 this morning - his eyes lit up! Then he said, "They probably wouldn't employ a kid from Australia."
    husband had already commented about this, he said as far as he could recall, they were employing people around the world. But we will dig.

    I'll also make enquiries once school goes back - college is also on vacation until after Easter. And in Australia, things really shut down over Easter, except for the Royal Easter Show! We had friends from the US visit us once over Easter, they stayed in a hotel in the city and were surprised at how much was shut down in the city on Good Friday. For an irreverent nation such as Australia seems, they said, it was a surprise.

    Our pediatrician is Jewish and this year Passover coincides with Easter. He's on leave until after Passover.

    So just over a week to go, then I can begin to put things in place.