Sam's Assessment Today

[Peachyclair]

Well we finally had it. And I am feeling very and let down.

Basically, what we have been told, is that Sam may well have Aspergers, but he can't treat it medically so it is up to us and the school to support him. School not really interested so it's totally up to us.

Oh yeah, and if we get it right then Sam will have a normal life. And if we don't he will end up like his Uncle (ie, living with mum at 30 /unable to hold down a decent job / virtually devoid of meaningful relationships).

Feeling incredibly sad and and alone tright now.

I don't know how I can cope with this alone, amd dh has depression already! But nevertheless, Sam has been discharged and we have no advoce except get it right.

[Fio2]

peachychair

I think it is better for you to have a diagnosis, even if it is heartbreaking for you. Have you seen an educational psychologist before? or are you in touch with the school SENCO? surely if he has a diagnosis of aspergers they have to give him more support at school?

I am sorry you are so down

[baka]

WTF? Who did the assessment? This is totally not on. So stunned don't really know who to suggest talking to (and of course that takes energy which I bet has just been knocked out of you).

Was this a paed?

[MeerkatsUnite]

I can only echo the other's disbelief. What sort of person told you this?. Unbelievable on so many levels. NO-ONE should be written off no matter what difficulties they have.

Why are the school not interested?. Are they saying they cannot cope?.

How old is Sam?. I take it as read there is no SEN (statement of educational need) in place for him. A statement is legally binding and will give a set amount of hours per week.

Would also suggest you contact IPSEA in this regard www.ipsea.org.uk

[Tiggiwinkle]

Like the others I am very shocked at this peachyclair-we were given a diagnosis of AS for our DS two weeks ago at our CDC. We are being given a lot of support: follow-up appointments, liaison with the school, referral to the local Autism Support group. I dont understand why you are just being left like that after such a DX.

[maddiemo]

I wish I were more shocked but I have heard of this happening to other people too..

Is there a local NAS branch in your area?
If so conatct them as they will have a good idea of support and advice in your area.

Is he on action or action plus at school, even if he does not have statemneting level needs I would have thought he would need an IEP in place.

Sorry you feel so down about it.

[Peachyclair]

Sam gets one hour of help a week from the support team, which he shares with three kids- one who has dyspraxia, one who has severe family issues, I dont know about the other one.

There is a SENCO, I haven't met her though. She told a friend (the dyspraxic girls mother) that because Sam is so intelligent, and the others struggle rather, she is finding it hard to include him. I had noticed the stuff he was bringing home was a little inappropriate, but at least he is happy in that class. People keep telling me I am lucky he is so bright, i think i'd trade the lot for a few social skills!

The chap I saw today was Paediatrician. I've heard similar of him before (he did seem nice though).

he did address some of our concerns (ie, Sam wasnt sleeping not because of AS, but because he is 'naughty... get this... lock his room to keep him in!) but we didnt get any feedback on the violence, which is what I need help with most- I can keep Sam's head above water (have done for five years), but his random violence towards children at school and one brother scares me a lot with the what if... factor.

I think school would like to help (except the class assistant who seems to hate Sam!), but they have a class of 31, most of whom come from fairly deprived homes and need a lot of very different help. I hope they will do what they can now though.

Is it worth contacting the NAS? Is Sam's 'I think it may well be Aspergers' not really serious enough for them? I dont want to make more of a fuss than I need to, but I do know this is getting me down a lot. I lost a lot (all?) of my long term friends through Sam's behaviour, and I had at least hoped for a few management techniques.

[baka]

the NAS may be able to provide some support (you certainly don't need a diagnosis). If you have a local group they would definitely be worth contacting.

A diagnosis helps to get the help iyswim- the nas helpline may be ablt to advise what to do with the pead being so useless.

any chance of getting private assessments? bibic have grants/allow you to fundraise ant their reports can be helpful in getting a diagnosis (even though they can't diagnose).

[heartinthecountry]

Peaches - I think the kind of fob off you have had from the Paed is despicable.

So what if this is not a condition he cannot treat medically? - there is still a lot that he as a dr could help with. At the very least he could bother to give you a proper diagnosis or refer you to someone who can or will.

I really hope you manage to get some help and support from someone.

[heartinthecountry]

sorry, peachclair not peaches

[heartinthecountry]

oh and I am totally outraged by the advice he gave you on sleeping. That definitely is an are he could help you on if he wanted to.

[Tiggiwinkle]

Surely he should be referring Sam to the clinical psychologists for a proper diagnosis if he thinks he has AS? That is what happened with us-we saw the paed who had concerns and referred us on. Is the paed based in a CDC?

[Peachyclair]

I am keen on BIBIC (having visited in the pat, plus it is walking distance from here almost!) dh isn't though.

Part of me says wow- fobbed off- reaction time! Part of me says just get on with it Clair,accept Sam as he is and just live with it.

I am and was 'wtf' at the lock on bedroom idea! DS is 5 and plagued by irrational fears of an octopus. He is also noted for hoarding things (once a lighter he found in the street) in hidey holes, what if he started a fire? I did forget (I admit) to tell paed that Sam had been known to make himself bleed (scratching inside of nose)as he is so scared to be alone in his room.

[baka]

I hesitate in posting this but will do- please don't take it the wrong way tis not as awful as it sounds. my ds goes through phases when he won't go to bed. At first a stair gate sufficed- then that stopped working (he could climb over it). Now we use 2 travel barriers - one on top of the other. He can't undo them if they;re done up tightly - and we can see him throough the mesh. We take them down after he's gone to sleep (don't like the thought of fire etc). It has worked- and he actually got less stressed with that than with us repeatedly putting him back to bed. It sounds like it probably wouldn't work for you- but just in case.

the paed should be able to help with melatonin as well. (if he was any use).

bibic are good- they see lots of very able children as well as some very severely disabled kids (often the children photographed in their magazine are very disabled- but when we were there another boy being assessed was very very able- top of the class stuff- but with quite bad behavioural problems apparently). why is your dh against it?

[Peachyclair]

I think dh is of the Dr knows all school, that's all.

The stair gate idea is good!. Ther eason we don't have a stairgate is that all the decent ones Sam couldnt get through have to be attached to a wall, and our landlord won't have that. But two travels might work....

Paed said melatonin wont work for us, that Sam just needs five hours sleep and is naughty.

[MeerkatsUnite]

If BIBIC is within walking distance then certainly make full use their help and expertise. That's what they are there for and you need support and understanding. Its all very well your DH perhaps thinking that doc knows best (methinks thats another euphamism for sticking his head in the sand) but surely he would baulk also at the suggestion given to lock your son's door!. What sort of bloody solution is that - well I can answer that for you, none at all.

I think at the very least you should seek a second opinion from another source (clinical pysch?); anyone but this idiot you previously saw. This person clearly does not have a clue about children period.

I would also contact IPSEA (www.ipsea.org.uk) asap with regards to accessing the proper educational help your son needs. He is being sold short currently and his school situation is not ideal at all. You're going to have to fight for this as parents and write to the LEA in question; school will not do it, it is down to you.

I would put the fobbed off big time part of you to the fore now and start seeking proper answers. You will need to be persistant in order to get answers otherwise they will quite happily have you running around in circles for the next goodness knows how many years. Don't take this lying down!!!. You are his best - and only advocates to make sure his needs are best served.

[KarenThirl]

Your SENCO doesn't sound very good at her job, tbh. Just because he's high-achieving and she 'doesn't know where to put him' doesn't mean that he doesn't have needs that have to be addressed - she has to give it some thought and decide what to do about him. That's what she's paid for, surely.

You must be feeling really lousy right now but at least you have a diagnosis and that will point you in the right direction to get the support and help you need. NAS sounds like a good start. It may seem all doom and gloom now but once you find your feet and get your head around the dx you'll be able to source out some support and things will get better.

[Peachyclair]

Meeting her formally next week, had to cancel but have to go to Newport / Chepstowto look for a new house (!!!) then. School seem to want to help now! Only down side is that SENCO turned out to be the Dep Head that said Sam was a liar when he told us he was being bullied at school.

Hey, but it's progress!

I'm keeping the BIBIC brochure for Sam's next bad day... dh will want it then!

Maybe I am the one with a problem? Maybe I am dramatising all this, and trying too hard.

[Jayzmummy]

How about having the intial phone interview with BIBIC....or even going there with dh as it is so close to you....this is free and they would be able to tell you whether they can help.

Cant believe that if you were seen at MPH they didnt refer you to the CP I have mentioned before....you could always ask for a second opinion. Have got a very snaeky feeling though that our horrid Paed is now working at MPH....and you wouldnt want to be seen by him!!!!!!

[TheRealMrsF]

peachy- our paed(who diagnosed both my boys with AS)...has much the same attitude- once actually told me she feels she is Piggy in the Middle !!!!!!(that was when i wanted ds2(leigh) assessed and the school said he was fine....and eventually i moved him to another school....and cos the school agreed the paed suddenly agreed to assess.)
She more recently said that i should watch programmes like Super Nanny to get parenting strategies

so......am not bothereing to ask her anything any more.

luckily my 2 older ones were on a Psychologists waiting list (2 yrs) and finally they allocated us a 'tempory psch' for 2/3 months... and today(the 2nd appointment...just me...not the boys)..... she announced that she has arranged a joint appointment with her and the OT....and she is contacting the school on my behalf about current probs.....and arranging 'something' for my husband and me to help us manage with a 'united front' as lately its all took its toll on our relationship.

sooooooooooo.....you need to write to this paed and state that whilst there is no 'cure' for AS etc...and no medicine etc... that you still need referring to somone who can help you in specific struggles you have.
To help structure the letter write down the specific behaviours etc that are hard...devote a paragraph to each- and request expert help that you 'appreciate he isn't specialist in AS etc'...our paed is a general paed and now admits ASD parents TEACH her!!!!

our area runs a 6 session course and each week it's hosted by someone like a Psychologist,Ed Psychologist,Occupation Therapist and Autistic teacher etc....and this was invaluble as i realised that for example the OT had so much info on what parents can do- or be aware of (like my 8yr old is permanently hopping/jumping/leaning/pacing etc...and it was her that explained WHY!!! So now i know why i can 'replace/substitute' these behaviours with something acceptable .....)

finally....how does he sleep....does he take ages to get to sleep? There is a 'medicine' for this which is not a 'sleeping tablet/tranquiliser etc'

It is probably the only useful thing my paed has ever offered!!!!

I won't drone on about it...but will tell u more if you need to know

Ther are ways to handle day to day confusions such as SOCIAL STORIES.... and heaps of fantastic books published by Jessica Kinsley @

www.jkp.com/catalogue/index.php/cat/aspergerautism

AND YOU ARE NOT ALONE...in a few months YOU will KNOW more and be helping others on here!!! We are here to help!

[TheRealMrsF]

...........ALSO FINANCIALLY YOU CAN PUT IN A CLAIM FOR DLA (DISABLED LIVING ALLOWANCE)

then (subject to income) u can apply to the FAMILY FUND for money to help with things like household appliances that you need due to childs difficulties....or playy equiptment....or holidays....

Aswell as the money being in receipt of it brings other'perks'...last year we visited legoland and they allowed all 5 of us to skip the queues.

Also can get a 'free cinema pass'

not making 'light' of it...but sometimes i feel you have to 'USE' the diagnossis to get something to 'reward' you and your child for all the difficulties they and you endure.

i know 'money don't buy happiness'....but it don't half make a difference to me when tom (11) cuts his school trousers (again) and i can throw them away instead of having to mend them. or when leigh is 'obsessively into some toy or other'...i can afford to indulge.....or when tom strips wallpaper i can plan to decorate.....

hope this gives you another perspective...many mums on here have used the DLA backdated payment...to decorate and equipt the childs room with things like lights,lava lamps etc....and if you decide to apply ask us for help!!!!

[JakB]

OMG, sounds absolutely bizarre that, yes, they are admitting Sam may have difficulties but they are not providing any help?!!!! And 'not sleeping because he's naughty so lock him in' . Sorry, is he from another era?
Peachyclair, I only echo what everybody else has said. I hope you get the help you need soon...

[Peachyclair]

Well, we have decided on a course of action...

1. Make contact with the local NAS, and also we have checked there is an NAS group there
   
   
2. If we feel we need more help or if Sam is still struggling, go to BIBIC (dh agreed this in the end)
   
   
3. If all this happens and we are still struggling, then we willo ask for a re-referral in Newport
   
   Poor Sam was so good in the assessment yesterday, which in many ways probably didnt help, but last night / today he is so mentally exhausted rom the effort- crying over things, etc- I guess the emulator mentioned on another thread takes a lot of effort to run!
   
   (I think DH's problem with all this is that when Paed asked about his brother and heard that he is living with Mum / has relationship issues / aggressive behaviour he kept making comments like 'worst case scenario is he ends up like your brother'.... well that would alienate anyone who cares about their family wouldnt it?)

[PeachyClaire]

Does anyone know ho we'd arrange a private Ed Psych?

Sam's good day yesterday reflected in one of his woest ever today (mental exhaustion?). So far:

DS2 has a black eye
Sam has eaten half a pack of raw chipolatas
I have had to cook two lunches because Sam spat (a recent development but popular with him) over the first
I have had to throw away half my paper collection- again due to spitting
I have been punched
DS3 has been caught in the 'cross fire' of Sam's whirling and screaming and been knocked over


Either a private Ed PSych or BIBIC (we are sending the form today- dh begged me- I said that didnt I, one bad day!).

I am also ashamed to admit this so don't think this is awful but I told dh last night if I could choose I wouldnt wake up ever again. With Sam, and ds2 mimicking his behaviour, and DH's depression I felt so low.

[baka]

have the free telephone conversation with Bibic and take it from there. See if it suits you maybe. Do you know of any good local ed psychs? A clinical psych would be "better" in terms of dx, but private ones can be hard to find.

Have a glass of wine tonight.

[PeachyClaire]

Had some beer, we already had it in!

we're already feeling a lot better, a plan makes such a difference doesn't it?