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Post by serrakunda on Mar 18, 2014 13:19:56 GMT
Really struggling to pick my way through a few things at the moment
one of my concerns is Simba's awareness of his own dx. School, education officer wouldn't engage with new on this. I feel his self awareness is growing, I want him to understand in a positive way, in a nut shell at the moment he thinks he is in special school because BM and dad didn't feed him properly so he didn't grow so he needs a bit of extra help. This is part of the picture, he had moderate learning difficulties, ASD and now apparently dyspraxia. School and education officer think it's not appropriate to talk to him about this stuff, though they are happy to send leaflets with words like disability, sen , ASD plastered all over them
those of you with children with these dx , are they aware, if so how old were they when they became aware, were school involved in the process, is autism awareness in their statement.
i know there are books which I'm getting hold of but i feel out of my depth here, am I wrong to think that school should be supporting me with this ? I think because Simba is at the mild/moderate end of these dx's, because he loves school and is achieving, and his most difficult behaviour happens at home, his needs are being overlooked.
Watching him at his school friends party last week, he is probably the one child in the class that has the potential to have an independent adult life, but we still need the right support to get him there
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Post by sockthing on Mar 18, 2014 13:37:44 GMT
Hi Serrakunda,
Out if my depth with this as kipper is still so young but I wondered if you think it may be worth talking to the national autistic Sociaty? When I rang their helpline about something they mentioned that they have a parent-to-parent support service. (May be able to empathise and advise about explaining to your child?). and also an education rights advice line. I have the numbers if you want them, but you probably know all this already so just ignore me if so.
I sympathise about the falling between two camps in terms of where Simba fits - I think we may have this with Kipper , who has a dx of Social Communication difficulties - I.e doesn't quite fit the autistic spectrum. I feel he seems different to his peers, but he isn't "special needsy" enough to fit in at the special needs facilities.
Hope you find some answers/guidance.
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Post by donatella on Mar 18, 2014 14:23:12 GMT
It's a difficult one and I deal with it differently with my two. Dd doesn't really have the capacity yet to understand and I'm not sure that set even understands that she's slightly off the wall! For now I worry less about explaining the dx to her and more about correcting the behaviours that need to be kept in check.
DS is a different kettle of fish and he knows that he has ADHD and asd. The ADHD is easier to explain because he can 'feel' it. He knows that he feels different pre and post meds. We have a few books that we've used - the best one is See Inside Your Head. It's a lift the flap book and talks about the way your brain works and how it can go a bit wonky sometimes. He's aware that he's different - always has been - and explains it by saying that his brain hurts.
It's a difficult concept to understand. My eldest is 13 shortly and even he doesn't fully understand it - just that sometimes his sibs do odd things and that can't really help it.
DSs draft statement very much includes autism awareness and states that he needs to be taught by teachers with experience of asd.
Other books we have are A Book About What Autism Looks Like and Can I Tell You About Aspergers Syndrome.
Also recommend NAS - they're very helpful.
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Post by donatella on Mar 18, 2014 14:25:51 GMT
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Post by esty (archive) on Mar 18, 2014 14:54:58 GMT
In our friendship group most of our children have cerebral palsy. In this group the kids talk about Big Fish having a lot of cerebral palsy whereas E has the right amount of cp to be who he is and what he likes doing. Although groups ages range between 16 and 10 now they've always talked about having a lot or a little of cp. But that is who they are. They wouldn't be Big Fish or Winge if they didn't have the amount of cp that they have. Parents always try to answer questions honestly but reply at the level they've asked. For me it's all about seeing the disability as a positive thing. In our family we've talked honestly about I wouldn't have Big Fish if he wasn't disabled so that makes me very fortunate. However we would like Big Fish to only have as much cp as he can cope with. Very simplistic but it's working for now. I am of the school of thought that children have a right to have information especially if they are seen as different by their peers. Obviously at a level they can understand. In some ways it can relieve their stresses. There are some good books out there written by people with the disabilities themselves which can be a way in to the conversation.
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Post by pluto on Mar 18, 2014 14:55:35 GMT
Of course you can explain to him that he has autism and that is why he finds it sometimes difficult to know what people want of him. I never lay too much empathy on the autism thing as it is how it is and I do not want him to use it as an excuse.
What I want to say to you is that it is easy to see a class with moderately learning disabilities and than think loads of children are less able, and that would be mostly the none talking children with asd, cp etc. While in reality this are often the more intelligent children in such classes.
Every child does well in special education and most like school, it is all very positive this does not mean it is close to mainstream level.
Do you realise that if he is diagnosed with moderate learning disabilities his IQ is likely to be between 35 and 50, that are not children who will ever live fully independent lives (yes semi, someone helping them with finances, choices etc).
Maybe your son does no longer fit this category, if you have doubts let him be tested again. My oldest has learning disabilities and autism and he can be really clever when it comes to solving problems or things he is interested in, but do not ask him things what have no meaning for him. He will never live independently, yet he can do every task in the house, use the washing machine, cook simple things, he speaks read and write 2 languages, plays piano with 2 hands, did all the levels of bridge building on i-pad in a few weeks, etc. The problem is if he would live alone he would not be able to fill in his time without falling in the obsession trap, not only that real problems start if someone calls and he has to open the door, if a stranger rings the telephone, if bills need to be paid, if money runs out, if something unexpected happens etc, etc. And than do I not even talk about his unreliable side, if he gets it in his head to sleep on the balcony with minus 10 he probably would, he might go back in after a while, he might not.....
Autistic children often make a lot of progress during puberty but their disability becomes so much more obvious as well.
Again children are sometimes tested and the results do not count up, it would be good to get him tested before secondary, at least if it is sort of the same you know that is than the truth, if he scores much higher special education might no longer be appropriate for him and mainstream with an assistant is better. My oldest has been in mainstream all primary with an assistant (with his own program really), now I got him a place in secondary at special education as he has less and less in common with his peers. Beside the fact he gets more support and better choices to look what he can do further down the line.
Again you might be right that they are failing him, but that can be investigated.
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Post by serrakunda on Mar 18, 2014 16:40:22 GMT
I've just had an interview with a education advisor from West Midlands autism, and came out feeling quite disappointed and more confused! I agree with you esty and I think that's were I'm trying to get to.
I hear what you say Pluto, but when I see Simba with his current classmates he does seem to me to be different. For example there are two downs children in his class, both with severe medical needs, they cannot read and mostly use sign language, others are much more severely autistic and while they may well be more intelligent than Simba they clearly lack other skills which he does have which would make all the difference to what his future could look like. I also do realise that a big part of the reason Simba has done so well is because he is in a small class with three staff. I feel there is potential there for him to be independent, with the right support.
I'm emphasising the word potential, nor do I have misty eyed dreams of a glittering university career. I know that if he were to live independently he would need support to do it. I ve no idea what his IQ is but I've been told that his test current scores are within the range for his year 5 peer group at his mainstream school and he has the added disadvantage of being a July birthday. However, my understanding is that learning difficulties, as opposed to learning disabilities, does not affect general intelligence. I am leading up to asking for reassessments, I don't trust the information I have from the placing authority, our GP is going through his medical notes and when I've spoken to him again hopefully I should be clearer. What I do know is that year on year since being taken into care, Simba has made huge progress, the question is how far can that progress go.
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Post by donatella on Mar 18, 2014 17:40:54 GMT
Would they agree to an ed psych assessment? Dds last assessment indicated a gca (iq) of 91 - two points above below average and indicative of mild learning difficulties. She's doing okay in mainstream with support.
Ds on the other hand is high functioning with an iq upwards of 120. This is where it can get difficult and where there is such a lack of provision. Something our la has recognised and working on. He'd never cope in a mainstream but he doesn't fit in in a learning disabled class either.
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Post by sooz on Mar 18, 2014 17:58:12 GMT
Would looking at an alternative special provision school be an option?
I looked around one for ds, but felt that the children catered for there have a higher need than my ds, I felt he would fit in less there than he would in mainstream.
I looked at another, where I felt he would fit in much better, but I knew that, at his current age, some of the older boys (up to 18) would scare him with outbursts and the school did not have a good record on safeguarding the pupils.
I have yet to look around a third, senior, school. It's fairly new and the senco at current mainstream school says she thinks it would suit ds very well. They work to gcse's level if achievable. (My only concern is schools proximity to bf, but that may change).
Xx
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Post by wibbley on Mar 18, 2014 20:06:53 GMT
I haven't read all of the replies above (trying to cook dinner & typing on the sly) but my DS knows he is ASD. I guess for us it is less of an issue as he spends as much time with other ASD kids as he does neuro-typical kids. So for us, he is ASD like X or Y or Z, and as most of these kids are lovely lovely kids it has no negative connotations for him. Recently he was doing his maths and told me "I have a maths brain, not English. I have a maths brain like X" X being another ASD boy we know. So on some levels he gets it. We tell him it makes him special, unique. That being different is very important. That it means he thinks about things in a different way from others, but also that some things bother him where they wouldn't other people. We recently had a chat about why school is hard for some kids with ASD, that teachers (and others) don't always understand how Autistic children think and what makes them upset. This can make school life tough for some (we know ASD kids both in HE and formal schooling).
We are open with our DD about DSs ASD as there is sometimes an inkling of jealousy about his 'special' treatment and we remind her of how very very hard he finds some things in life that she finds easy/easier. She is fab and whilst they have the usual sibling fights, she will make sure he can go in front of her in a queue (queuing is a BIG issue for DS) or help him with his seat belt (fine motor skills issues) etc.
As soon as DS was diagnosed (just after he turned 4yrs) we began dropping it into conversation. There are loads of books out there for ASD kids, the NAS has a good, age appropriate list on their site. I have just bought 'dude I am an Aspie' as it is very short with small cartoons, which will work better for someone DS's age. He is not an Aspie, but HFA, however I think if I had to fit in him in literature for straight ASD or Aspie, he would identify more with Aspergers as he is very able in many ways.
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Post by twoplustwo on Mar 18, 2014 20:33:42 GMT
Not had time to read all the replies but skimmed them so hope I'm not repeating stuff.
Stig has similar diagnoses to Simba, moderate learning difficulties, dyspraxia and autism has just been added. CAMHs are writing to school and SEN dept to have autism added to his statement so that provision can be made.
He has been aware since junior school that he is 'different'. He is 13 now and attends a special school. He does have a tendency to use his conditions as an excuse but neither school nor I let him get away with that one (well not too often anyway).
In the main they are pretty good with him at his school but, in my view, they sometimes don't manage his behaviour as well as they might. I'm hoping that they'll be a bit more understanding once autism is added to his statement.
At present - even though he attends a school for children with moderate learning difficulties - there is a reasonable chance that he'll manage independent living (with support if necessary). Several ex pupils have achieved this, some without support.
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Post by pluto on Mar 19, 2014 21:16:19 GMT
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Post by twoplustwo on Mar 19, 2014 22:10:14 GMT
Interesting link there Pluto.
Although the 'moderate learning difficuties' label doesn't always equate with IQ of course. Stig is classed as having 'moderate learning difficulties' but his IQ has been measured as being between 95-110 (the reason for the range being because he lost his concentration towards the end of the test and just put down any old answer!). And having an average IQ (Like Stig) doesn't necessarily mean he'll be independent (although I'm hoping he will).
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Post by pluto on Mar 19, 2014 22:48:47 GMT
You see this gives confusion, those political correct terms. Mental retardation is what I am talking about, you talk about a mainstream child with a certain difficulty in learning like dyslexia (beside asd ofcourse). This is what the BILD says:
What is the difference between the terms 'learning disabilities', 'learning difficulties' and 'intellectual disabilities?'
The term 'learning difficulty' is often used in an educational setting to denote a problem from the point of view of not reaching certain academic attainments. However, in the learning disability culture it is often preferred to the term 'learning disability' due to an avoidance of any ‘label’ connected with the idea of a ’disability’. The term 'intellectual disability' carries the same meaning and it is clear that the grounds for such variety result simply from the perspective of personal preference.
All these terms have evolved over the years according to what has been deemed appropriate for the times, and indeed BILD has made the progression from such terminology as 'mental subnormality', 'mental retardation' and 'mental handicap' and it is quite probable that it will change again in the future.
Although definitions may be important in some contexts, BILD’s emphasis is always on the person’s rights, dignity and individuality and we try not to “label” people unnecessary.
---------------------------------------------------
As far as I am aware a child with an IQ in the normal range has no moderate learning disabilities (or difficulties whatever you want to call it), for that you need to have a very low IQ.
Where I live no child is allowed in special education with an IQ over 70, including children with autism. Over 70 you are in mainstream with an assistant. And ofcourse the borderline children are loosing out.
Do I get this totally wrong?
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Post by serrakunda on Mar 19, 2014 23:37:54 GMT
I didn't start this to have a discussion about how intelligent or not Simba may be, but for what it's worth I dont recognise Simba in Paul Coolmans descriptors of iq ranges below 80, and the bild website appears to suggest that IQ of a around 30 is severe learning difficulty/ disability and that's definitely not simba
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Post by twoplustwo on Mar 20, 2014 8:52:35 GMT
Sorry serrakunda, didn't mean to turn this into a 'meaning of mild/moderate learning difficuties' discussion.
So, going back to your original question, Stig has been aware he is 'different' since primary school (even in reception it was pretty obvious because he was one of the four kids with one-to-one support). I've always been honest with him about his 'labels'. For him having a name for his difficulties helped him - and, I think, made it more 'real'. Vaidated it for the other kids too.
I personally disagree with what your school and ed officer are saying. From your description of Simba you won't be telling him anything he isn't already aware of and, as you say, leaflets and stuff they give you have 'disability' on them anyway. My view is that talking to him and being upfront with him will make it easier for him to know that you understand and want to support him. It will also help him to realsie that there is reason he struggls with certain things Maybe shcool are afraid that, given a label, he'll start using it as an excuse not to try or for bad behaviour? Maybe he will but I still think that the advantages of him being aware of his dx outweigh the risks.
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