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A bit of a harsh mother?
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There's a body of opinion that ASD's can be caused by enviromental effects both before and after birth. The classic one being the MMR business. I guess diet could be another
I say there's a body of opinion, so far I haven't seen any necessarily compelling evidence, and the existing view is that ASD's are something you are born with, carry throughout your life, and die with.
I can only speak from personal experience, you understand, but Mrs FR's "condition" is so much part of who she "is" that I couldn't imagine that eating this or that having any particular effect
..but I think that is quite seperate to ASD( or perhaps concurrent is what I mean ?)
It seems that a lot of people can be lumped into being "labeled" as having ASD, as per Lurkers example...when that is what is suspected by family members, or teachers, without any real investigation.
..this is my limited experience with what I observe at school.
Some of the " mis-labeling " is done in a well meaning way, but it is not accurate.
BTW as I am quite ignorant in this field , I am using " " as I don't want to offend anyone by my words.
boy1 has just got his "alert" card (card to give to emergency services if he is ever arrested/witness to a crime/acident etc to say that he has an ASD)
he says it says "my behaviour may be unusual/threatening"
so now he says he will leap about and behave bizzarely if the situation ever arises!!
i think he was joking
BTW. I score 14 on the test.
She particularly likes the "threatening" bit (She's just over 5 ft tall and weighs about 6.5 stone).
The problem seems to be deciding where behaviour is caused by enviromental things, and where its actually caused by a disorder.
:-)
I would do just as that mother did because I feel I have to prove to people that YES I DO give discipline.
Like Lurker's 12 year old, my 10 year old suffers sensory processing problems. I've now had the OT's report and she says he has "definite differences"! Hallelujah! I've been saying that since he was 6 weeks old and wouldn't smile or look into my eyes! Why wouldn't they listen to me then?
Funnily enough (I feel a long post coming on), the paed asked me what it was I was trying to get out of this. Well for my son not to be chastised for being slow to dress after PE or for fidgeting in class would be a start. The school then complain to me that he has low self esteem. Yes he does, because they won't flippin' well lay off him for the things that are difficult. That's why I need diagnosis. I'm not interested in benefits even though I'm a single mother. Stuff that. Just give me and him a bit of space so that he can be who he is, in his own special way, without feeling so bad about himself.
I'm not asking for him to be allowed to get away with bad behaviour. On the contrary. As I said above, I too would call the police. In fact I told him tonight that if he ever stole from me (it came up as a possible solution to his potential lack of money in the future) I would treat him in exactly the same way I would a stranger who stole from me. He knows I mean it.
Then I get really hurt and upset when people imply that people like me are seeking diagnosis as an excuse for our kids not 'conforming' to their idea of normal. Quite frankly it makes me wonder why the hell I bother with any of it!
It's lovely to read such familiar and understanding messages. Hi DG and FR ... you were both a great comfort to me on my 'badly behaved children thread'. It's also quite distressing to read some of the less understanding posts but also proves to me that it's not my imagination that people think I'm looking for excuses.
Lurker ... I would love to exchange emails with you. It sounds as though ours have fairly similar traits.
NGL - I too am doing my Cert Ed. What's your presentation on?
Thanks again. Wonderfuld thread. Sorry for long post.
All my best stuff has been with my Mum for the past 9 years.
Thank you to all contributors especially Lurkio because as a mother I related to your early contribution about having children and your expectation for them.
The compromise of 'your expectation of your children' and 'what thay will be and want from life' is one that most parents struggle with I suspect - it's made harder for you and it was eloquently expressed.
I'm humbled......and will stop being such an ungrateful mother.
...and Minty
I always think understanding my own children ( or at least trying to) makes me understand, and have renewed respect, for my own parents.
They must have had hopes, and dreams and even notions for us, which we may or may not have fullfilled, and they have to live with that.
I read somewhere that we expect our own parents to accept and love us as we are, so we should do the same for our children.
..just thinking out loud .
Really, it's the rest of society that need to learn a little tolerance. These kids are, in my experience, amazing (mine certainly is but then I'm biased). Whilst he frequently leaves me wanting the ground to open up and swallow me, he also makes me burst with pride.
In fact, I'm off to give him a great big hug because I don't show him often enough how much I love him.
Did anyone watch After Thomas over Christmas? It was superb and gave a real insight into living with a child with ASD. That child's development was extremely slow but accelerated when a dog was introduced into the family. He's now at college doing a child care course. These kids can and hopefully will lead normal adult lives.
The intolerance of society in general, against these children, I believe, is stressful and leads to low self esteem. It's also heart breaking for parents. I can tell everyone that he's brilliant until I'm blue in the face but if all they see is sullen and moody, how can they ever believe me?
Hug time.
Actually, as part of the paradoxical reaction to stimulants (eg Ritalin), children with ADHD often calm down after a can of sugary Coke.
Eating healthily is likely to be good for all children, but it's not a magic 'cure' for PDDs.
There are a few specific theories about particular diets, none of which are terribly well tested (Gluten free/Casein free, and artificial colourings, are what springs most immediately to mind). There isn't that much evidence either way for them - wouldn't immediately dismiss them, but while i've seen some improvement in some chldren with various PDDs on them, it's very far from a 'cure' and certainly does not apply across the board.
Mrs FR went to a "normal" primary school as her parents couldn't afford to send her to the nearest special school.
Every day the teacher would come in and say "sit down"
So Mrs would - wherever she was she would sit (literal interpretation - y'see)
She got beaten
Every day
Never realised why she was being beaten, and just thought that was what happened because she wasn't "normal"
Then one day they had a new teacher. Who said "sit down". Mrs did - and waited for the beating. The teacher said to her "No - sit in your own place please - when I say sit down - I mean in your own place"
She never got beaten again.
So things have moved on - quite slowly it seems sometimes - but at least they've moved on.
Ignorance is borne out of fear. Society doesn't really understand how someone who can barely speak can draw inticrate pictures, or calculate the day of the week of a given date in their head. Anyone who doesn't fit the norm is ostracised.
I don't think folks who quote the "Daily Mail" line are being deliberatley unkind, they just don't know. Its down to me and others like me to educate them, and I hope that, in some small way I manage to do that without boring or p*ssing people off too much
Apologies for rambling - I'm very very tired - and if its OK with you I'm going to bed for a bit...
A Rough Guide to Diagnostic Labels
From an academic point of view, everything we've been discussing on this thread is on Axis II of the DSM-IV-R (Diagnostic & Statistical Manual of the American Psychiatric Association - there's also the ICD-10, International Categorisation of Diseases, published by the WHO, but I'll leave that for a bit!). This covers all the bits psychologists / psychiatrists are supposed to look at when making a diagnosis.
Axis I is for acquired disorders / 'mental illnesses' - things like depression & schizophrenia.
Axis II is Pervasive Developmental Disorders - things that start in childhood & continue throughout life, & how people develop. Pervasive Developmental Disorders are what this thread has been talking about.
This axis also has Personality Disorders on it, although they aren't the same thing & the whole category is rather controversial.
Axis III has medical conditions contributing to the disorder (for example blindness affecting social interaction in an ASD diagnosis).
Axis 4 is environmental factors affecting the disorder (for example that the patient is bullied at school).
Axis 5 is Global Assessment of Functioning, on a scale of 0-100 from 'has just made very serious suicide attempt' to 'someone other people look to for help'.
PDD - Pervasive Developmental Disorder - cover-all term for conditions developing in childhood & persisting throughout adult life. Includes Autistic Spectrum Disorders ASD, Attention Deficit (Hyperactivity) Disorder AD(H)D, Specific Learning Difficulties SpLD, Global Learning Disabilities (would once have been called 'mental retardation').
High-Functioning Autism (HFA)is used to describe people who are verbal & relatively able, IQ normal range, but with initial delay in learning to speak.
Aspergers syndrome involves normal or above-normal IQ, no speech delay, and relatively less impaired social skills.
There is a huge amount of overlap between these conditions, which is why the term Autistic Spectrum Disorder (ASD) is used. It's important to note that everyone is 'on the spectrum' to some degree - there is a continnum between the most severe Kanner-type autism, and the most social party-animal types, and we are all on it somewhere - picking a cut-off is a bit arbitary, and poeple who function well in their own niche may well never be diagnosed.
Specific Learning Difficulties (SpLD) include dyslexia (affects reading & writing), dyspraxia (motor co-ordination), dyscalculalia (maths), & a few others. Diagnosis usually happens where there is a very uneven pattern of development - for example I learnt to read & do arithmetic when I was 2, but I could not write till i was 7 (motor control), or tie my shoelaces (motor control) & tell the time on a clockface (left-right reversal) 'till after i left primary school.
Attention Deficit (Hyperactivity) Disorder involves extreme distractibility, forgetfulness, very poor impulse control, difficulty in planning, etc. It's the only PDD to be commonly treated with medication (so far) - Ritalin & similar are stimulants, which in most people would increase activity, but in ADHD have a paradoxical caming effect. I reckon this is due to increased activity in the frontal lobes improving impulse control & planning, but that's just my idea. Some people just get the distractibility without the hyperactivity.
Global Learning Difficulties are usually defined as IQ below 70 (2 standard deviations below the norm). It can co-occur with everything mentioned so far, but doesn't necessarily do so - it's possible to have a PDD & IQ at or above average.
Sensory Hypersensitivity very often co-occurs with all PDDs - being hyper- or hypo-sensitive to sensory input. Tactile Defensiveness gets mentioned most often, which is hypersensitivity to touch. The extreme hypersensitivity can cause 'sensory overload' - basically the brain is trying to deal with too much information all at once, and ends up not processing much properly at all, which is very confusing & can only really be dealt with by making all the superfluous input go away.
IMPORTANT - please see my earlier post - I am in no way qualified to know anything - please correct & add to as needed.
On the food front - I suspect that cheese (very high in casein) pushes up my sensory hypersensitivity. I was put on a non-dairy diet when I was in school for a few yrs (due to glue ear) & my parents think it made me a bit calmer. Since I don't eat it any more (ethical vegan) then it's largely irrelevant, and i've never been able to persuade my brother to try the experiment.
Tried omega-3s (flax seed oil - vegan alternative to fish oil) for 6 months but they made absolutely no difference to dyspraxia, PMT, concentration, or any of the million-and-ten things that it's supposed to be a cure-all for.
I've seen a few people try various special diets (i have worked on special needs playschemes for a few years), and some of them seem to help a few people a little bit, but i've never seen anything that consistently works for everyone or makes more than marginal difference.
Reading the above I would say he has aspergers. He talked early and had a reading age of 15 at the age of 9 (15 being the highest result available, it didn't test beyond that). However, his writing and spelling are appalling for his age although he can produce beautiful handwriting but can only cope with that for a few minutes. But then he also has terrible co-ordination problems which fits with dyspraxia.
I do wonder if the reluctance to diagnose him lies in the fact that I might demand all sorts in terms of support for him. I won't. He doesn't wish to appear different to his friends and I'm not looking for financial assistance. Just, as I said above, that they stop telling him off for the stuff he can't help. He also does stuff that he can help and he's as naughty as the next boy. They can tell him off all they like for that.
When I was in primary school (small village school), for 4 years I got put in the 'naughty cupboard' by the afternoon, nearly every day (it was the first aid room too, & quite big with a light).
Apart from the times I hit people (got picked on a lot) i still dont know why the teachers put me there most of the time - they just seemed to turn up, like rain does, and i'd get shouted at for a bit (which was just confusing because i wasnt very good at spoken language at the time, usually a bit deaf from glue-ear, and they looked funny shouting), and then they'd get another teacher to help them put me in the cupboard.
Actually, it was probably the best place for me - quiet, i was allowed to leave books in there after a while so i would be quiet, and it had a nice comfy chair & blanket for reading books in, & the other children couldn't get me. i can still remember the scratches on the first aid cupboard.
Don't know if i'd have done any better in a special school - living in a small village it probably wouldn't've been possible, and i think the school just found me a bit baffling - i do wonder what they thought when my little brother (also dyspraxic) turned up 'oh no, there can't possibly be another one!'. Mostly I quite liked primary school though, 'cos apart from making me do handwriting they mostly just left me in a corner with my books.
Secondary (local comp) I think i'd have done better anywhere else, 'cos i spent most of it getting bullied (broken bones), and the lessons were mostly pathetically easy, strictly exam-orientated, & completely pointless in terms of actually learning anything (i particularly remember getting really cross with the 'science' teacher 'cos he wouldn't admit there were more than 3 states of matter, and i kept saying there were 5 if you counted plasma & Bose-Einstein Condensates, & even more if you counted weird stuff in the middle of stars & at the beginning of the universe - at the time i was definitely going to be an astrophysicist or maybe a Quantum Mechanic. I was 12, and if i said there were more than 3 states of matter in an exam i'd have lost marks, but i'd just read about condensates in 'New Scientist' and i thought they were the most interesting thing ever & everyone needed to know all about them NOW) - i spent the last year in a psychiatric hospital with hardly any school & did much better on the GCSEs than i was predicted.
6th form (state sixth form college) was brilliant - academically selective with very high expectations and a lot of very bright people happily doing 4 A levels & all sorts of 'extension' activities like building robots & a science debating club, and being a 'swot' wasn't a problem.
Uni's been good, although my first year was a bit confusing, with all sorts of societies full of people who actually wanted to talk to me & do interesting things, competing with my attention for academic studies for the first time, & me thinking this was so wonderful i had to go to all the interesting societies on campus all at once as well as having discovered that there were all sorts of sports teams that didn't want me to catch a ball, trying to fit in sleep & studying around extracurricular life was a bit difficult to organise at times, especially trying to get used to this weird new idea called 'friends' too.
you are making me feel guilty
believe me i am a very impatient person (he is standing behind me and says that i should say that he thinks it is true) :-)
i often think he got given the wrong mum, he should have had a nice patient non shouty mum
instead he got me
friends are shocked sometimes when i am quite sharp with him because he has been going on and on and on about some sport statistics or something and i just want "5 minutes peace" to quote mrs Elephant - (for those who have read those kids books)
so please don't think i am in any way saintly
i am not
as far as getting a label goes minty - it does help
it gives the school access to specialist help - mostly to give them advice. At primary school my son had help with handwriting and attended a social skills and a gross motor movemont group - and is just about to start a spelling and handwriting course at senior school (not in lesson time)
but in the mean time, if you can contact the dyspraxia trust or the autism society (which i can't remember the name of), both have useful web sites
they have fact sheets
take them into school for the teachers - they may have them already, but it shows that you know what they should be doing to help your son
I can go back to being the horrid mother I am without quite so much guilt :-)
your girls would wonder what was wrong if you changed - you can't confuse them like that
it would be cruel
:-)
I'm loathe to show the school anything until I have a proper diagnosis. They can't see anything wrong (except that he takes up too much space, fidgets and generally drives the other kids round the bend - oh, and that he's disengaged from the learning - but of course that's his fault, not theirs). He's on the gifted and talented register and so he doesn't have any specific learning difficulties I think they feel he needs to pull himself together and I'm just a fussy mother. A diagnosis would change all of that but a diagnosis seems to be like hens' teeth.
I am in touch with the dyspraxic society or whatever they are called and they've sent me some useful papers to read. Paed has recalled us following receipt of OT's report but I probably won't now see her until March. School have finally contacted the Ed Psych (2 years after first offer) and I have now returned my questionnaire to him. Slowly but surely, we are getting there.
In the meantime I will just have to continue swinging between patience and understanding and pointless punishments. For all my shouting today, he will still show me up if he's ever given a balloon again.
By the way, I did eventually burst the balloon but felt really cruel doing that. It would be so much nicer if he'd just calm down, listen and put the balloon away to save it for later. To be fair, he did do that in the restaurant but then drove me mad again with it once we left the restaurant. Again, he is quite literal and so when I said 'not in a restaurant' he did as he was told but took me literally to mean that it was fine to do whatever he wanted with it outside of the restaurant. Aaaagh!
but then you only see what you are looking for don't you
a little story that has taught me a lesson today:
have just returned from my friends house where we have been staying for the weekend
she has a son who has never been officialy diagnosed with anything specific because he doesn't fit into any boxes, at one time they said he had cerebral palsy - he doesn't he has some something on the autistic spectrum plus dyspraxia off the scale, but he needed a diagnosis to get help.
he has always said that he wants to go into politics and we all gently pointed out to him that you need much better diction than he has and perhaps he should look at a career in another field - perhaps maths related, as he is really gifted at maths.
About a year ago i contacted my friend to say i had been thinking about her son, and i had realised that rather than telling him all the reasons why he should not go into politics, as a friend i should be supporting him.
he is now 17
he is the vice chair of his (posh grammar) school debating team
he is on the youth parliament of his borough
AND
has just been offered a place at Cambridge to read politics (and some other stuff that i can't remember)
watch this space
:-)
this is the link you're looking for lurker :-)
Only problem will be fitting it round my internationally-acclaimed but still extremely cool guitar playing (i can nearly do 'Blowing in the Wind', very slowly, if you don't mind getting the 3 chords muddled up sometimes - hey, it's probably good for me & more fun than 'physio' ever was. My being the next Ani DiFranco might take even longer than the brain surgery).
Hmmm, maybe we could just make it compulsory for all politicians to have Asperger's. Knowing they were telling the world exactly what they thought without bothering about 'tact' could have some interesting effects
For that reason I'm not entirely convinced that being relatively low functioning and consequently having a low IQ means that the person is necessarily unintelligent.
As technology has advanced, there have been a number of quite striking cases where people previously thought to be non verbal and therefore unreachable, have proved to be very lucid indeed. This link illustrates this quite well (scroll down to tye Youtube movie). Whats also quite interesting is the bit with the cat.
http://www.wrongplanet.net/modules.php?name=Forums&file=viewtopic&t=19932
I'm also not ceratin that all supposed "Savant" traits are, as it were, auto responsive. Certainly low functioning autistics like Strephen Wiltshire,
http://www.stephenwiltshire.co.uk/
Show a degree of skill that moves outside merely automatically doing improbable mental gymnastics.
For a long time Mrs FR was believed to be low in intelligence. Her verbal skills are at times limited to almost being non existant. Her ability was discovered almost by accident (incidentally by the same teacher who saved her from the beatings). These are not savant skills in the accepted sense, as she clearly understands the priciples involved, and is able to explain them at some length to even a numbskull like me.
Mrs FR talks of having a fully functioning intellect trapped inside a mind with dodgy interfaces, so there's a degree to which it seems to me to be a communication, rather than an intelligence problem. I tend to think that low functioning non verbal autistics might actually be rather brighter than we think.
Having said that - this is only my opinion, albiet one based on some first hand experience.
Or a footballer for Hereford United!