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SPLD's eg.reduced processing speed/ working memory linked to fatigue ??

(24 Posts)
supermum98 Sun 10-Mar-13 13:19:42

Has anyone any experience of reduced processing speed (4th percentile) and or working memory linked to fatigue. My ds is shattered at the end of school at the moment, doesn't want to do any of his extra-curricular activites which he is normally passionate about. School doing a lot of SAT's testing. In year 6 now and quite worried about how he will cope with work-load at secondary, if displaying these symptons now. School says all kids are tired at the moment, but it is more than this I would say. Friend who has child with processing issues, occasionally has to keep him off school because of fatigue, but schools don't get it so has to invent symptons.

Jamillalliamilli Sun 10-Mar-13 14:48:34

Hi, ds (18) is also 4th percentile for processing and short term memory, and no question that tiredness makes it worse. He describes close to shut down as ‘zombified’ and often has no recollection of events after having reached that point.
I’ve no idea where he was at percentile wise at your dc’s age, but I suspect it was the same then.

He never had time off but school broke down for other reasons, so we’ve been home ed for a few years, so things are tailored round him, but he’s managed IGCSE’s and is now struggling his way through A levels, and heading (eventually) for uni, but a lot’s had to be given up to allow him to succeed educationally.

So what I can say is if you can get through the education system one way or another, longer term it’s possible to be on that percentile and still get where you want to be, but you may not be able to have it all at the same time iyswim.

moosemama Sun 10-Mar-13 21:39:05

Hi

I found this article really interesting reading regarding how processing speed and working memory can affect learning and some ideas on how to help and compensate.

My ds's processing centile isn't quite as low as your ds's but the gap between his Verbal Skills and Processing Speed is huge and I know this causes him big problems, including making him extremely tired, especially when completing longer and/or mulit-level, complex work. It also means that teachers can have unrealistically high expectations of his capabilities in terms of tests and exams, without understanding that they needs to differentiate and organise suitable access arrangements for him. Of course that adds even more pressure.

He is also in y6 and preparing for SATs and he's exhausted. To the extent that the GP has sent him for two lots of blood tests and has us taking him in regularly so that they can keep an eye on him. I think the SAT work, plus stress and worry over leaving primary and going to secondary is wearing him down. GP has said that if nothing turns up in this last lot of bloods then it's most likely purely stress related, but that that is a dx of elimination, so he can't make that call until he's ruled out anything physical.

I've told him not to even think about the SATs, that they are for the school to measure how they are doing with their teaching and make adjustments if necessary and that he should just turn up on the day, answer the questions and not give them another thought.

Handywoman Sun 10-Mar-13 22:51:55

I have a dd in Y5 with a diagnosis of Dyslexia. Her working memory is very poor (can't remember centile). I hope you don't take this the wrong way, but when my dd is exhausted after school it means she is engaging and learning. Presently she had a cr*p teacher and this is not happening. Obviously there is a balance to be had(!!!) but there are kids with difficulties which do go completely unaddressed in school to the extent that there is no engagement and no learning. If your ds is tired it might not be all bad news (although, as I say, there needs to be a balance!!!). Y6 is tough all round. I am not relishing the prospect here.

supermum98 Tue 12-Mar-13 12:21:03

Thanks a lot everyone, just getting on with it, some optimism to be had then? Moosemama, so I am not going mad? I was considering getting blood tests done too in the Easter hols. re. iron levels. I am sure it's SAT's though and his SPLD load. Handy woman, yes you are right I have had the same thoughts, was not tired with last teacher, but there was not a lot in his class books and have wondered whether she had given up on him. Now they are drawing the work out of him and he is engaged, so there is a positive side to this ur right. I just need to manage the situation. Do you think there is any hope of them understanding tiredness at school? I have been told no SAT's adjustments.

moosemama Tue 12-Mar-13 13:07:18

Hi supermum.

I think it's worth a GP visit, if your ds is ok with them and it's not something that's likely to heighten his anxiety even more. My ds is obsessed with ds likes the fish-tank at our GPs so jumps at the chance to go. I didn't ask for bloods, just told them how exhausted he's been, that he's sleeping heavily and waking exhausted, when historically he's always been practically insomniac and that he's given up his beloved after school cricket, because he doesn't feel well enough to go. I explained that he has had no specific symptoms, just the exhaustion and the GP said bloods were the natural first step.

For ds, he was happier and less exhausted last year, despite being more engaged, productive and achieving much better than the year before, but he had an exceptional teacher that he adored and she was brilliant at differentiating for his needs naturally. This year his teacher is nice, but doesn't really understand his needs and he is struggling. Plus he's really struggling socially, which just compounds it.

Last year he produced some good work and some notable long pieces. This year his books are pretty much empty again, so we are back to where he was in y4 before he had the exceptional teacher.

It's too late for SATs adjustments now if they haven't already put him in for them - I think the had to notify the exam board mid January of all pupils who will be having access arrangements. Ds1 has a statement and was automatically entitled, but the school still tried to block him using a computer, despite it actually saying in his statement that he should use a computer and have extra time for all tests, assessments and examinations. hmm

Flappingandflying Tue 12-Mar-13 17:18:32

Vitamin B helps. Flyingboy also suffers with tiredness and actually I don't think he will be able to have a full time job. Remember they have to expend energy on things that to us are subconcious so no wonder they are tired. For us October and March are the worst and he always has some form of meltdown during these months.

Year 6 is crap. Year 7 is much easier and they mostly love it so don't worry too much about that.

supermum98 Tue 12-Mar-13 20:44:57

Moosemama so many parallels. I will go to GP's, he isn't happy about the idea, but I feel that I have no choice. It doesn't sound like his fatigue is quite as bad your ds's, but sadly he has stopped doing his Golf, which he is passionate about, because he is too tired. Will book him the occasional lesson on Sunday's which is the best day energy wise. Prior to this period of SAT's testing I would describe him as an energetic child. With the fatigue, he has become more emotionally labile and disobedient. Whatever, flapping says, I can't see him coping with the work load of Secondary at all, if this is anything to go by. We were too late to get concessions in SAT's, but the school didn't think he would qualify. I'm not convinced as EP says he would qualify at GCSE level. Now I'm wondering if he will have the energy to sit the tests to be honest. I need to go to the school and talk to them about his fatigue, but I have the horrible feeling that they will think I am neurotic and normalise it to other childrens fatigue levels. It is interesting that output seems to be teacher dependent too in your case, but I can believe it. I also have a dilemma as EP thinks he should be on Action Plus, Parent Partnership thinks he should be on Action and School doesn't think he qualifies for anything. He has WM in 12th percentile, processing 4th percentile and hand-writing speed reduced to 3rd quartile which I believe is 25-50th percentile, so according to EP 3 x SPLD. Thanks for link article looks really good.

topsyandturvy Tue 12-Mar-13 21:10:31

I cant believe you have posted this as I was in tears earlier today for my ds12s suffering.

He has scored 1st percentile for processing speed and 95 percentile for intelligence, his output or academic performance (with an immense effort and only achievable in 10 minute bursts due to the immense mental exhaustion) is below average.

He is also somewhat dyspraxic and today he burst into tears saying he is useless at everything,his hands wont obey him, and he cant even use a computer mouse without an immense effort. Then he started yelling, dont I understand that every single simple thing in his life is so hard for him to do, and then he reeled off a list.

He sleeps well (11+ hours a day) and often wakes up unrefreshed. He is usually utterly exhausted, his moods are volatile, he yells quickly and cries quickly. he used to laugh quickly too but we see less and less of that now sad

I dont agree that this state of affairs means he is learning and engaging being pushed as it is exactly the same every single day of the year. It means he can barely exist without a huge mental effort.

topsyandturvy Tue 12-Mar-13 21:15:33

Just gettingonwithit, would you mind talking some more about your ds18 and how he coped from the ages of 12 to now? Things are worsening for my son (and we were told to expect this as the processing speed deficit becomes more and more significant as they get older).

In what ways, if any, have things become easier for him with age [grasping at straws emoticon]?

Also, reading between the lines, I am guessing your ds processing problems are fairly significant (like my ds) - literally how far did you have to pare back his life and how many gcses was he able to manage per year?

A one hour meeting with friends requires such a mental effort to continually process what they are saying, try and keep the words in the right order, interpret it and formulate an appropriate response. DS really struggles with this.

I have cut back as much as I can and life s still very much a struggle.

DS is able to do less and less of the things he wants to do, and is finding less and less enjoyment in the things he used to be able to enjoy

supermum98 Tue 12-Mar-13 23:00:59

topsyturvey- I can relate to your situation too. My ds cries and is on top note a lot and I see less of the fun-loving side of him at home, now the pressure is on at school. Is your ds on the SEN register and have u any tips for me going into Secondary. It is all beginning to make sense to me now reading these threads.
My ds also was 98th percentile for verbal reasoning and verbal knowledge and I understand that the bigger the gap between that and processing percentile, then the more frustrated/tired they are.

Jamillalliamilli Wed 13-Mar-13 09:27:26

Supermum my ds also was 98th percentile for verbal reasoning and verbal knowledge and I understand that the bigger the gap between that and processing percentile, then the more frustrated/tired they are.

Yes. Ds is at the top 1% of some scales, and close to the bottom of others, along with other things it’s the trying to knit together the gap, that causes so much mental and physical exhaustion and is also what singles them out for others unable to understand intelligence and inability in the same person.

There’s lots of reasons to have hope for the future, but I suspect how things are managed is key to attainment, protecting mental health now, and developing future robustness, and sometimes you have to appear to be molly coddling to get them to robustness. You know your own child better than anyone, and are best placed to know when you need to push, and when not to.

Topsy ds’s problems are very significant (fully statemented 1 to 1 full time, eventually) and lead to erratic behaviour similar to someone who hasn’t slept for 30 hours, both mentally and physically, which combined with intense bullying left him headed for nonverbal outside home, and a raging mess inside.
Things are very different now.

I will try and get in this evening and explain more about what worked and didn't for us, and hope it's of help.

Life collapsed for us, so we made decisions based on reacting to the situation rather than planning, but are now very grateful to what seemed like disaster at the time forcing us down a different path. It gave me the chance to fully understand what it was my ds needed to achieve and allow him the best chance of developing to his full potential, rather than being damaged by being unable to cope with the system designed to bring NT children to their full potential and grade them according to how well they can adapt to that.

Home ed was our salvation, (though it's not for everyone) and allowed him to take 7 IGCSE’s one year and 4 plus 3 AS's the second year, despite his difficulties, and develop friendships and be able to maintain them, all be it with prompting and rigidity, but a massive improvement on what had been a deteriorating life.
But there's no chance he could have achieved this without much tailoring, training, overview, and flexibility around his strengths and weaknesses, or that school exam structures would have allowed for it if he’d made it that far. But that's my ds, some schools would be a lot better than ours was.

supermum98 Wed 13-Mar-13 10:36:46

Just getting on with it. Wow you deserve a supermum medal. What brave decisions, clearly ur a bright, switched on Mum, happy to learn from u. I am just starting down this road, ds only just fully diagnosed. Just starting to see the signs that secondary will b a struggle now he is in a school that is pushing him in year 6 ( not unreasonably so ). On way to school today mentioned we were staying on a boat this weekend with Scouts, normally he would be really excited, but he just said that he would be too tired and I don't' believe this is SAT's pressure.

topsyandturvy Wed 13-Mar-13 13:13:29

Well, my ds is also home educated and fortunately always has been. This is how I can be certain that it is not academic or high level thinking overload that necessarily causes the problem.

For us if he is feeling okay to start with we can do 10-15 minutes work before his brain shuts down and we have to stop. He will then show all the signs we have mentioned here, outbursts, he cant do anything, exhausted, clumsier etc.

Justgettingon I would really really like to know how you have achieved that!!! At present I estimate that we could maybe get through 2 gcse subjects over 2-3 years. This is mostly because of the very short amount of time he can work for and also the very long recovery time between efforts.

topsyandturvy Wed 13-Mar-13 13:14:39

Also, after the outburst the other day and reassurance I have had from reading this thread I have taken ds to the docs today and they have ordered a battery of standard blood tests addressing fatigue.

I am not sure if I want them to be negative or positive at this stage to be honest.

topsyandturvy Wed 13-Mar-13 13:17:17

Justgettingon, please could you expand on this: "There’s lots of reasons to have hope for the future, but I suspect how things are managed is key to attainment, protecting mental health now, and developing future robustness, and sometimes you have to appear to be molly coddling to get them to robustness"

I am struggling to see hope for ds future. I havent discovered a way to develop robustness. Mental health is probably as intact as it could be as he hasnt been at school. I totally agree that apparent molly coddling has always been needed here.

topsyandturvy Wed 13-Mar-13 22:41:16

bumpity bump

Jamillalliamilli Thu 14-Mar-13 09:41:45

I’m afraid I’m not a supermum at all, I let my son’s mental health collapse to the point of being sent home from school as no longer mentally fit to be there, because I allowed myself to be lulled into believing all sorts of things and being frustrated instead of listening to myself.

Topsy what we did was work on all the components of good mental health because I realised that even before things got as bad as they did, without it there had been no solid building block for building skills, emotional resilience has to come before practical, you can’t work properly on training a/your brain to work better if you’re not in a good shape and believe it’s do-able.

I read up on exactly what good mental health was. It was more than I’d assumed.

I took over lots of executive functions and tried to accept the lack of age appropriate self-care skills better and tried to learn to recognise and accept where he was at that moment un-judgementally, and work on that, and building self-esteem and self confidence, and also try and increase his physical health. (he’s hypermobile with poor balance, usually has a least one limb out and cracks and creaks badly) humour and positivity has been vital (not always easy)
Every time we've needed to do something new or sustained, the bar’s set beneath what’s difficult and reward success, then slide in small amounts of challenge until we got up to not needing as much ‘look you can do it’ in order to achieve.

We tackle sustained effort and memory tricks through all sorts of things especially games and play to schedules and competitiveness and accept that pushing the edges can be painful but no pain no gain, it's knowing where to stop.
Sorry this is very rushed and I can’t post any more right now, we’ve had a bit of a (unrelated) disaster here, but I will try and make some time to explain better.

Jamillalliamilli Sun 31-Mar-13 21:47:56

Topsyandturvy I’m really sorry I didn’t get back here any earlier. (serious housing probs)

There hasn’t been a proper plan just a constant trying to tackle the deficits and make it all work.
Things that I think have been really important were constantly pushing ds to go for slightly longer than his comfort zone, even when he was frazzled, accepting that he will be clumsier and exhausted by it and praising him hugely for effort rather than content, but highlighting every content improvement and raising his own self beliefs that it was all stuff he would and could overcome, even if not perfectly, and one way or another he would get there regardless, and it was worth it.
(the praise for content became considered patronising around 16/17)

Deciding quite early roughly what he wanted to do in life as a living (started as something science/maths/IT, is now definitely mechanical engineering) so we could concentrate on showing him how he could realise a dream regardless of what had been said about his inabilities.

Harnessing male competitiveness and competing against him so he had someone to beat.

Making him stay out there and deal with people, no matter how peopled out he gets. (huge amount of support, chance taking, and repairing gone into this)

Lots of age inappropriate play fighting which helped increase his stamina, as did a lot of swimming. Ds says “If you build your physical stamina it really does help you to work for longer.”

He is still struggling with many basic self care skills and is not where you’d expect him to be at 18, but last night he made it through his first party that he didn’t have to be picked up from through exhaustion. He has finally developed the stamina and ability to sometimes do what other 18 yr olds take for granted, even if he’s now very “peopled out” and hasn’t been able to think well most of the day. I’m pleased to say he also looked after a sozzled friend and helped clear up because he now knows “how to ration and harness my energy when I need to.” (I’m going to be a mean mum and modify that to ‘when I really want to,’ but that’s the key, go with whatever it is they want to manage and help them develop it and hope it leaks into other things.)

He had a read of this thread and a discussion and below are the things he said about what helped from 12 to now.

Jamillalliamilli Sun 31-Mar-13 21:51:49

“One I have realised did me a good service was getting me to do more work in the times I could, fitting as much as I could into it, keep going and have faith, but when I did have a break, not letting me just rush on to the next thing but take a good rest.” (I would pull him off all screens, which he doesn’t think helped, but I still do.)

(Age 13 onwards) “8 hours a night sleep pattern and a short walk in the morning works for me. I didn’t believe it but I'm glad you made me get up at the same time even if I went to bed hideously late, and I didn’t sleep as well when I went late, and you just said go to bed earlier the next night, even if I was really tired, so I could choose to stay up late, but still had to get up early. I didn’t like it and was sure I needed more sleep but its helped.” ( I still do and he still gets the hump about it! I try to have a no screens for an hour before bed rule, but as he ages I’m losing that battle, and his sleeps more disturbed again but he now knows)
“Oversleeping by a bit (30 to 60 min) is brilliant, but if it’s a lot, I’m tireder and less able than I would be if I got up sooner, a good regime has helped though I still wake up at four for a bit every morning” ( I was hoping to lose the 4am wake up, he usually falls out of bed, but have insisted he gets up early every weekday morning and get the day on the go, because he’ll need it as an adult regardless if his internal clock does do this.)

(Age 14 onwards) “You absolutely need a mouse that fits your hand, it’s one of the most important things getting me control of my hand and computer, it can take a while to find one, but it matters, you can’t process through rsi and its very debilitating” (There were many things that I wondered if they were a big fuss about little, right pen, mouse etc, but most turned out to be very real, only a few were teen ‘try ons,’ sod the money they really need new tools as their hands grow)

(Age 12 onwards) “you told me to my uselessness was down to circumstances and environment and not down to me. I believed you dam it!” (Am now trying to get him to realise some of it may be him and needs addressing, so careful what you wish for.)

( 13 onwards) “When I got frustrated at things you didn’t let me walk away failing, you made me step back and try them from a different place” “ sometimes it was so different I didn’t know I was still working on them, but it worked, I get frustrated but I don’t give up now.”

( 13 onwards , 13/14 being the hardest) “You had to work to help me keep my sense of humour, sometimes you really frustrated me because you didn’t let me stay down about things but I could see you honestly thought it was the right thing and I trusted you, maybe didn’t always say it, but…”

( 12 onwards) “playing pairs and monopoly for as long as it took, was really good for me, and as long as you take it at your own rate you can build up the complexity” (very low ‘on line memory’ but better than it was)
“Number plate game really helped my processing” (Making words from number plates while driving, longest or most complex one wins)

"Teaching me to drive (on the beach at 14) was great, my processing got better quicker, (so did his self-confidence and the knowledge he had the beginnings of a vital adult skill) making me learn that I didn’t have time to panic and I had to dig the car out before the tide came in was horrible, but finding out I could fix my own mess was a big thing."

“ I have to relearn things every day but I can now do them very fast and I have better stamina for having to do it” “ I don’t know how you got me to accept that I just had to but there didn’t seem to be a choice, just as well really.” (who knew he accepted that?)

You have to be stoic, and the grim sense of humour helped (13 onwards) when I couldn’t find anything good in the world, you didn’t tell me it wasn’t like that, just found me good things too, and reminded me to laugh, and I found working outdoors a lot really helped. (lots of pleasant distractions, and creatures, less to argue about, and always food!)

( 12 to 15) You drove me mad asking me how I thought every animal managed to learn things but in the end I realised you were right they didn’t worry about failing or frustration, they just did things badly until they improved or got eaten, and you weren’t going to let me get eaten and I learnt a lot watching them.

“It IS a huge mental effort to exist, and I’m glad you believed me because that’s what made it possible, but the only way you can build stamina is by pushing yourself and I didn’t see it at the time, I thought you were just unreasonable and relentless even though you knew how hard it was, but you kept pushing me to achieve more and it was in my best interests and yours because you don’t want me living in the attic when I’m 30” (too right, we don’t have an attic!)

“You kicked my arras with me, not against me, unlike school and I know I can’t go to uni unless you help me, but one day I’ll be ok and so will he, if he believes it enough, now can I go and do my Raspberry Pi because I still can’t multitask”

The thing that’s come out of this is how much he does actually know, that he doesn’t normally say, how much the rows expense and heartache are worth it, (I need another £300 for the next lot of exams and lord knows how, but the where there’s a will there’s a way that gets preached has to be practised) how over dependant he's been (something I’ve worried about) and also how over close we’ve had to be to get to where he is.

(The other thing that may matter is I’m a LP in a wheelchair and suffer my own frustrations and limitations and constantly push against them, and often fail, so he gets ‘overcome it,’ ‘get over it,’ and ‘try because of course life is bloody difficult’ automatically modelled, but neither of us are sure how important it’s been or not.)

I hope that's given a sense of the 'shape' of what we've done, and I can't say it's right for anyone else, just that my ds's feeding back that it's been right for him, even though he's fought it a fair amount, and their have been difficult periods of trudging through treacle pretending I knew it was going to work out.

Follow your instincts, but believe in what can be achieved when you push yourself, because he will struggle to believe it if he’s let, because it is that difficult for him, he can see everyone else can 'just do it', and he has to grow into a man in a few years.

The easy path is, easier, it’s reasonable to be attracted by it, and wonder why anyone should think you should climb a mountain especially when others don't have to. (In our case he has to be able to house and fend for himself as an adult.)

Jamillalliamilli Sun 31-Mar-13 21:59:07

Sorry its so big (and sorry about not spotting pm earlier) but we struggled to condense 6 years at all, but hope it's of some use.

MareeyaDolores Sun 31-Mar-13 22:16:46

Oh, I'm saving this, thank you thanks

topsyandturvy Mon 01-Apr-13 11:13:41

just getting on, thank you thanks thanks and please thank your son thanks thanks.

I read your post this morning and was crying too much to reply so I had come back later. I have never met anyone who is similar to my son and I really appreciate your son sharing with us. I am sure it will benefit anyone who reads this thread as noone can understand something better than the one who has been through it.

All best wishes to your family and especially your DS who has persevered, I hope he achieves whatever he wants to in life.

Jamillalliamilli Mon 01-Apr-13 14:57:42

I’m sorry it made you cry and glad if our experiences help others.
We’ve been terribly alone and isolated and subjected to a lot of accusations and assumptions and as a mum I can’t do right for wrong, and self doubt is a nasty creature, so I really do feel your pain, but the internet says there’s lots like our sons out there, and hopefully there'll be more understanding and support of them (and their parents) in the future.

I’ve realised that nowhere have I mentioned that he has a diagnosis of ASD, (I suspect nowadays he’d probably get several other overlapping diagnosis’s as well, but for us it meant you have an explanation/label that can cover everything.)

We’re entering the next stage of life here, and facing the same problems, criticisms and fears, just at a higher level, but now he’s an adult and not supposed to need the support, and in the end hopefully he won’t, but I don’t know when that is.

He's trying to get a specific job, (which he will require support to manage and his would be employer will expect to be provided, that'll be fun) which will give him better employment chances later, while continuing studying A levels, in a ‘gap year’ (be interesting to see how that pans out) and improving his self-care and organisational skills, in order to hopefully start studying at degree level at 20. (If he gets the grades)

He will be doing it from home and will require support to manage as “I can either achieve independent living, or study for a degree, but if I try and do them together I’ll definitely end up failing at both,” but meantime the rest of the world blithely spouts ‘pushy parent’, ‘mummy’s boy’, ‘helicopter parent’ etc, and of course I start wondering if they might be right, but then this morning the party I was so pleased about caught up, and he started to ‘flap’ in Tesco’s and an over six and a half foot tall thing with a six and a half foot arm span jumping up and down on the spot flapping and keening out of frustration, too close to the carefully balanced Ferraro Rocher display…. blush So anyway, now rested we will be giving Sainsbury’s a go instead. Onwards and upwards...

Just keep going, get as much support as you can, anywere you can, and always have a plan b, c, d etc, it’ll work out, you’ll make it.

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