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Been directed here - REALLY need some advice and support.

(25 Posts)
youarewinning Sun 12-May-13 13:14:35

Hey all. I'm very sorry this is long but I REALLY need support - I don't know where to go next. (posted in primary ed and chat - directed here by a MNer who recognised her DS at same age who now has a dx and I'm really pleased to hear is doing extremely well grin)

My DS is 8yo, in year 4. He is a late summer born and this has so far seemed to be a barrier in getting his difficulties recognised.

Throughout Infant school there were problems where DS seemed to struggle socially - sometimes behaving totally out of character. School said he has poor social communication - I agree!!! He also struggled greatly with literacy - especially the actual writing side of it. He learnt the phonics and grammer 'rules' like a Wiki dictionary!

In the December of year 1 he was a P8 writer and I expressed my concerns as he'd been 'mildly at risk' in the DEST. (told youngest, boy etc - give him time) Told at end of year 1 he's a 1B writer. (I was dubious)

Year 2 he seemed to really come into himself and manage more socially - his teacher told me in the Feb he was a 2C writer and was fully on course for a 2B by the end of year 2. Which he was given.

He started year 3 and had the most wonderful teacher ever! She really 'got' DS and described him a 'quirky' but got his 'quirks' and knew how to work with them instead of against them IYWIM? I expressed my concerns re his literacy but because he had a 2B he wasn't considered behind - despite the fact he could hardly write more than a jumbled sentence or 2.

Feb of year 3 told he's a 2B still but she thinks he'll reach a 2A by the end of year 3. However she totally agreed there was something 'not right' about his writing and put him in for the DST - he came out 'not at risk' but had some -- scores and was 'diagnosed' with a poor working memory. He was a 2B at the end of year 3. Met the year 3 and year 4 teacher as concerned about his 'lack of progress'. Plan made verbally to monitor and assess his literacy and give support where needed.

Roll on January this year and DS is STILL a 2B writer. Having had enough and feeling something not right and DS being failed I met with the new head teacher. (started sept having been deputy at an outstanding school).

DS immediatly put on SEN register and given an IEP. He is on SA. I can see definitive improvement in his writing and agree with his teachers current assessment of him being a high acheiving 2B but with not enough use of discription to reach a 2A as yet.
I also agree with the schools reassessment of DS on entry of a 1A - but wish I had been informed of this at the time instead of misled - it does make sense why they were willing to reassess him for dyslexia too.

I have to praise the school and his current teacher for all they are doing for him. He has 20 minutes a week 1:1 to address his individual needs in writing, also joins other pupils who have diagnosed dyslexia once a week. The school have also now got a programme called junior speak (?) in which DS writes his sentences and it reads it back to him to get him to realise what he' writing isn't what he 'thinks' he's writing - he can then correct it. They are hoping aswell this will get him to notice his b,d reverals and using phonics correctly - eg no of syllables in word matching no of phonetic combination he writes!

His slight difficulty in reading, his habit of reading numbers in reverse and low writing ability is beginning to affect his maths aswell. I have addressed this with the teacher as he was a 3B at the end of year 3 and I have said he should have a reader/scribe if he needs it. I have been told its his lack of evidence that prevents his lack of progress.

However - I cannot help but think DS social difficulties are a big factor in affecting his writing. DS does not enjoy and is reluctant to read fiction - he says he just cannot imagine the characters and cannot predict what may happen next so I can only think he never gets that 'can't put this book down' feeling. He does enjoy however reading endless fiction books on his favourite things - transport and lego!
He talks in a very monotone voice and rarely shows much of a range of emotions, he's far more attached to 'things' than people. He does not read others very well although this is improving with extreme input from me. He'll often turn a conversation back to 'him' or more what he's thinking and often talks about it, there, him etc forgetting that the listener does not know what he's talking about. Sometimes I swear he starts the conversation in his head and then finishes it out loud .
Sometimes he won't answer someone - not because he's being rude but because he cannot think of what to say or how to answer. He'll just give half a smile and then run off back to what he was doing. I've lost count of the number of times I've had to stop him giving our life story to people in shops etc because they say something that sparks off a dialogue in his head and he just starts it. Basically he can't really and doesn't really have 2 way conversations. He'll just talk and talk about his latest obsession and doesn't even notice if no-ones listening.
Children he plays with are starting to comment that he always says the same thing.

He is a big target for being picked on - and often is. However lately whereas his peers are developing the ability to make those name callings and little niggly digs, pokes, foot steppings on - on the sly - DS cannot. He'll join in, retaliate, try and initiate play this way - and when he's 'told on' admit he did it without actually explaining why, and not standing up for himself with other children. I've tried to teach him to shout at them if they are hurting him to make them stop and draw attention to what is going on so an adult can come over and help him - but of course he can't shout because it' not allowed!!
Because of this, and because they tell on him when he retaliates it's beginning to look like DS is not a very nice little boy. He's no angel - obviously - but actually when you observe children in groups is the quietest socially.

This leads on to the next thing - he actually isn't quiet! and comes across as far more confident than he is. When playing games he tends to play with 'you need to do this' 'and then this is happening' and 'this character behaves this way'. If children do not want to play his way he actually couldn't give a shit and plays alone! In fact he'd much rather play lego alone in his room than outside with all the children from our street. Sadly, again as children are getting older and develop the social skills DS doesn't have, they are starting to be quite mean about his way of playing, a few picking up on the fact they can flounce quite loudly "I'm not playing your game unless, it's not just your way etc". Of course DS just says that's fine go and play your game then - and they use it as an excuse to report DS is being mean because 'he won't let them play' Sadly aswell his need for things to be done 'right' can often be miscontruthed a bossy and domaneering. Something I'd probably think myself if it wasn't for the fact I also know he's a total sheep because he doesn't have the verbal or social kills to make the right choice yet.

This is by no means a complete list of all his social difficulties - and he really does want to social interact with others.

I can't can't help thinking that DS problems are more some sort of special need with social interaction, imagination and communication - and that he cannot apply his literacy knowledge to paper because he doesn't understand how to communicate with others and doesn't have an imagination beyond his own interests.

I'm meeting DS' teacher on Monday and have a GP appointment on Tuesday but could really do some advice, perspectives from others who have knowledge of this field or have been there themselves with their children.

TIA

PolterGoose Sun 12-May-13 14:07:51

Message withdrawn at poster's request.

PolterGoose Sun 12-May-13 14:19:11

Message withdrawn at poster's request.

youarewinning Sun 12-May-13 15:59:31

Sensory - sometimes complains in noisy places it's too loud (has been known to sit between my knees using them and his hands as ear defenders!) and sometimes in noisy places gets a bit 'crazy!' iyswim. A bit over stimulated might be a good way of putting it.

Fine motor skills and joints fine - he loves to draw and design things all the time. Actually has little problem with writing when it comes to describing his designs and how they work! No pain.

Sits still and concentrates for hours on end with things that interest him - totally the opposite when it's not something that grips him. Often needs prompting to keep on task and totally zones out on things at times. Especially TV - you can be calling him and tapping him and he just is not there. grin

I do use a lot of ASD techniques with DS already because he's always had ASD tendencies - and I work with pupils who have ASD so recognised these. I work with pupils with severe SEN though so mainsteam SEN/ASD is not something I'm familiar with - eg how 'bad' do the 'differences' have to be to get a diagnosis.

I guess all the time DS was coping and managing I (and I feel awful for it) just carried on trying to help him as things arose and with hindsight should have pushed for more support years ago. sad

youarewinning Sun 12-May-13 16:01:19

I actually have though dyslexia was the main problem - until he showed not at risk!!!

Badvoc Sun 12-May-13 16:14:20

Well, I understand how you feel op.
But please don't be too hard in yourself.
Check out the TH support thread.
Good luck x

youarewinning Sun 12-May-13 16:17:03

whats the TH support thread? Thanks

Badvoc Sun 12-May-13 16:51:33

It's a thread for those of us with dc following the tinsley house programme for dc with dyslexia/dyspraxia/OCD/add/ADHD/asd.
I will try to link for you...

Badvoc Sun 12-May-13 16:53:09

www.mumsnet.com/Talk/special_needs/1724666-TINSLEY-HOUSE-SUPPORT-THREAD-PART-3

Youarewinning, I'm only another parent, not a professional, so wouldn't dream of dxing your DS by internet, but if I may take a punt? Everything you are saying about your DS cries out something like high functioning ASD to me. I really think it's worth printing off your OP when you see your GP. Don't be surprised it the GP has very little experience or knowledge of neurological spectrum disorders. You probably know as much as (if not more than) they do. You need to be seeing a specialist, which in my area would be a developmental paed, not just a general paed. In other areas CAMHS is the diagnostic route.

School sound helpful, but again, I think they need to be getting specialist help and advice, through an educational psychologist or communication and interaction outreach services. (Sometimes called autism advisory teachers, etc.) Your DS should be on school action plus at the very least. If he is making no progress despite school's best efforts, you should be looking into getting statutory assessment for a statement of SEN. If you request it yourself, you are in control and the EP assessments will have to be made. IPSEA website has some standard letters.

His writing difficulties sound more like imagination, inference and deduction problems rather than dyslexia to me. ie, more ASD type deficiencies.

My DS2 has ASD and had a very similar profile to your DS at that age. Friendships became too complex for him as his peers social skills became more developed. He is now in secondary and is happy without friends, which I have come to terms with. He rarely reads fiction, preferring fact books, like Guinness book of records or horrible science.

Good luck and keep posting. smile

youarewinning Sun 12-May-13 18:22:21

His writing difficulties sound more like imagination, inference and deduction problems rather than dyslexia to me. ie, more ASD type deficiencies. YES!!!!!!!!!!!!!!!!!!!!!! This is exactly what I have been starting to think and see but couldn't quite put it into words - can I steal that sentence to present to his teacher tomorrow? He does have definite spld with writing - spelling/ letter reversals etc but it' definatly more than not understanding how to write - for example he knows and has passed all his phonic sounds so that as a normal starting point hasn't happened.

They are doing bronze, silver and gold sentences/ paragraphs with him. eg - he write a sentence/ paragraph about something they give him to write about, they talk about it and he goe and re writes it with adjective etc, they talk more and he improves it again. With 1:1 support he writes some lovely things - but he cannot naturally use imagination and description.

NoHaudinMaWheest Sun 12-May-13 21:03:02

Hi glad you found us.

It is possible that your Ds has both ASD and dyslexia type difficulties.
We were pretty sure that our Ds had dyslexia since reception even before we were aware of the ASD type problems but it took until yr 10 to get a formal diagnosis of dyslexia.
I think the screening tests are not that accurate especially if the dyslexia is in anyway atypical. I would ask for an educational psychologist's assessment, especially if the HT is sympathetic. It can take a long time to come through so the sooner the better. This also ought to tease out exactly what kind of writing difficulties he is having. EPs cannot diagnosis ASD problems though so referral to paed also needed.

youarewinning Mon 13-May-13 17:58:35

ARRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHH

Bad day sad

Things are just getting worse for DS. These past few weeks his behaviour at school lunchtime has deteriorated. I do believe him when he says other children are hurting him - and it was the fact that a boy had his arms around DS' neck and was hanging off hi back that DS bit him blush but this behaviour is sooooooooooooo unlike DS.

He reports that children block his his way and taunt him. It really hard because I want DS to know this behaviour is unacceprtable but also want him to have strategies to deal with it. BUT I have absolutely no idea.

I did tongue in cheek tell DS to do it back (a few weeks ago) - joking I doubt children will hurt him if they know he'll fight back. I do not agree with this tact but also beleieve self defense and preservation are acceptable.

I did get a leeeetle bit in trouble with his teacher for this blush but did make it clear that whilst I don't agree in violence as he' been saying for ages he struggles with other children, they KNOW he has social difficulties and have done bugger all they can't really be surprised that DS has reached breaking point, and when he can't fight verbally has began fighting back the same way. I did say if other children choose to pick on him and hurt him, torment him etc they have to expect something back.

I also want to be very careful not to give DS the idea that it's OK to behave that way because I understand he finds it hard - has anyone been in the situation their child uses bad behaviour and tries to justify it by their diffculties? (btw - I'm not sure DS is doing this but I do wonder if me keeping on at school about them ensuring he is also getting heard makes him think I'm justifying his behaviour) confused

I just REALLY do not know what to do. sad

I worry that if DS begins being 'naughty' that he'll get that label and we'll get less support.

PolterGoose Mon 13-May-13 18:36:11

Message withdrawn at poster's request.

PolterGoose Mon 13-May-13 18:38:13

Message withdrawn at poster's request.

youarewinning Mon 13-May-13 21:01:41

Thanks ever so much polter Your description is what I have been doing with DS - looking for reasons for his behaviour. He definately has no off and stop switch. I'm glad that is OK - I didn't want to start looking like one of these parents who thinks little Johnny can do no wrong iyswim?

He is so matter of fact sometimes I have to stiffle a giggle - like to today.

"DS why did you bite X"

"well, I was playing on my own and he came up, jumped on my back and wouldn't let go. I tried kicking his leg and stamping on his foot but it didn't work - so I bit him" hmm grin

I stand by my point that other children must know and notice he struggles and they need to do their bit in giving him space a much a he needs to learn how to deal with situations.

Funny you mentioned about how a tap can feel like a punch - DS seem to be the opposite that where other children have spacial awareness, he doesn't. He'll run around mad knocking into people (in running not on purpose!) and either doesn't care or doesn't notice!

The good news is that the school agree DS needs profesional input. Teacher has told me to ask GP tomorrow for referral to developmental pead. If I get nowhere then she will liase with SENCo re: ed pysch referral as a starting point.

So on Wednesday I'll have conversation with teacher again and arrange SENCo meeting - and I'm going to insist they put some behaviour support on his IEP. he mentioned the ESL teacher spoke to him today - thats another person in school I can beg them to get some support from. smile

PolterGoose Mon 13-May-13 21:19:27

Message withdrawn at poster's request.

Levantine Mon 13-May-13 21:44:23

Hallo, your ds sounds very like mine, though he is younger (6). I started the process of getting him diagnosed just before christmas, at the suggestion of school. I am only just getting a grip on juste how much support he needs in school. I can't add to the great advice you have already had, but just wanted to say hallo, and I know how lots of what you are going through feels

youarewinning Mon 13-May-13 22:21:08

Hi levantine Thankyou for coming and posting. It's scary isn't it? You have this child, who is just your child and the way they are, and suddenly you find yourself defending them but having to use the defense as a way to get support. I'm having to realise DS is still the child I know - but that he can't continue being that child without support. I really do not want HIM to change, more his situation and him given the tools to deal with things. IYSWIM?

polter what always strikes me with my DS is that where other children try to justify their actions - because they understand they're severe and will occur consequences - he just explains it in such a "this is how it happened way" and will admit to doing more - simply because he did!
Thanks for the suggestion about sensory seeking - thats certainly something to look into. It does actually make sense. Do I need to explore that myself or will he get input from professionals for this? Is that something an OT deals with?

PolterGoose Mon 13-May-13 22:28:16

Message withdrawn at poster's request.

youarewinning Tue 14-May-13 07:29:03

Thankyou. Yes, I'm sure getting some of the support needed will be a fight but it's really helpful to have the all information - at least I then know what I'm fighting for.

Forwarned is forearmed!

mrsbaffled Tue 14-May-13 12:02:46

Good luck x a lot of what you said rings true with my nearly 9 year old too. We are half way through being assessed for AS/HFA. He displays dyslexic type problems and was dx with SPLD on writing and spelling two years ago, but it never felt 'enough'. DSIL suggested AS as DN has it. It seems to fit. He was observed in school last week and DH and I will need to do some horrendously long questionnaire without him soon....

In our area you don't get to see an OT, btw. We got given a pack with flow charts to follow to work out what sensory needs he has. Pants! "The out of sync child" was a lot more help.

youarewinning Tue 14-May-13 19:14:46

I did it, I did it I DID IT!!!!!!

I went to the GP alone without DS, explained school are on board - working memory problems, poor social communication and writing problem and on SEN register. Explained though DS social problems extend to him being o socially unable, that developmentally he's getting so far behind his peers that he's beginning to get anxious, unhappy and behaviour is regressing.

Asked if I though mental health - I said no she did say thats a good thing as 3 year waiting list and minimal funds with CAMHS --thank god he isn't near a breakdown then really! - and that if it turns out not to be mental health all they'll do is say this. She asked if I felt a developmental community pead would be bet. YYYEEEEESSSSSSSSSSSSSSSSS grin

I did say school were willing to refer to ed pysch but as school said - they will only look at educational diffculties which are already being adressed and not the social side of it which is whats causing the problems.

o shes going to write a referral - she was hoping they see him. If they don't after school club and school have both said they will then write a letter explaining why he needs to see one because they agree I couldn't give a life history in a 5 minute appointment. My goodness don';t you feel under pressure when in there?!

PolterGoose Tue 14-May-13 19:17:16

Message withdrawn at poster's request.

youarewinning Tue 14-May-13 19:24:28

Thankyou.

I feel a kinda force coming over me to protect DS. It's always been there - that maternal instinct if you like - but this one is different. That I want to make it clear to people that DS thinks and sees things differently - and if they can't accept that then its their problem!

I'm pertrified but yet also feel like a weights been lifted at the same time grin

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