really don't know what to do with my son.......

rainbow81

Hi there.

Well, i can't come on here and diagnose your son with anything and find it quite alarming that some people can but I too had/have many problems with my son's behaviour but because he was seemingly "quiet" at nursery apparently he was just shy, according to the gp (and in fact a paediatrician). 18 months later he was diagnosed with Autistic Spectrum Disorder.

Anyway, despite our problems I really would advise your son being seen by the Community Paediatrician. Your GP will refer you (sounds like you will have to be pushy), unless you wait until you have moved, which I would be tempted to do. Otherwise you just have to go through the same info over and over (we moved too! luckily to a place with shorter waiting lists). I was the Paediatrician's administrator in our area until I had to give up work to look after my son as no childminder/out of school club would have him so I've seen it from the other side too. They really are the gateway to all the other services. My son's been seen by speech therapy, occupational therapy, physiotherapy, audiologist and CAMHS, all through the Paediatrician. They can't fix anything but they can diagnose and refer/provide medication if need be.

Nobody cares about your son like you do so it is up to you to push for what he needs as hard as that is (i'm not pushy at all and my post natal depression got brought up by the professionals more than I thought was strictly necessary).

Anyway, just wanted to let you know that you're not the only person who's been through everyone thinking you're a bad parent. It sounds like you've got your head screwed on but I do understand how difficult it is.

Just a side note, I'm not sure but I was under the impression that if your child's on an IEP at school then there is supposed to be a termly meeting between parents and the school to update on progess?? I may have got that wrong but that's what happened with us until we got the Statement.

mandy.h_2

hi
this was my life to perfectly well behaved daughter then along came what at the time could only be described as devil child himself.

i struggled for years was embarred by his ways, behaviour was fobbed of by gp my son had allsorts and hgp even questioned my parenting skills. eventually enough was enough chaged gp went to appt and refused to move till he did somthing. my son was not to bad at school but minute came home oh my god he errupted
any way to cut long story short we saw specialist eventually when he was 10 and got diagnosis of asperger syndrome

i read everything there was about it and he was clearly on spectrum.
go to gp and refuse to move till you get help otherwise sorry to say you wont cope as your son gets bigger and stonger dont be fobbed of .

my sons condition nearly ripped my family apart,daughter needed counselling,he has support in school now, husband finally gets it that ds is what he is. son is learning rules and social skills. good friends help and support us others we have lost over yeasr but hey ho. you as a mother know your child.

just to say does get bett my ds in main stream school (with help) doing relly well about to do gcse and we are happy. yes we still have blips but our understanding of him make life easier.

boltonangel

Hi

Thanks for all you messages of advice and support.

It's half term here this week (a nightmare!!!) so I can't contact the school.

To be honest though I think that I will just wait until we move (mid november) because the waiting lists here are awful and you have to fight for EVERYTHING (my 2nd son had bad reflux when he was younger and it took almost a year of going backwards and forwards with gp's and dieticians questioning whether I was feeding him or not etc before he was finally treated and better within a month!!)

I feel better just knowing that there might be a reason for this behaviour and that someone might listen to my concerns.

My dh took ds to work with him on monday morning so I had a break from him and dh said he was an angel....probably because he was occupied and the centre of attention with everyone.
Then the next day he was back to normal and had his tv,ds,xbox taken off him and his laptop (very old and worthless) thrown away to show him the consequences of his bad behaviour.

mandy.h_2

hi
school hols are always bad for us a change in routine ds cant cope well, we tend to stick to same get up time and bed times etc. dont want to presume but if your ds is on spectrum taking away things as a punishment wont work believe me i know we found a reward scheme for good behaviour much better. we kept a chart and when he had so many good stars he was rewarded with a treat. his school also say even now he responds to praise much better than being told of, i think its because he got so used to being the naughty kid before diagnosis that raised voices and criticism just goes right over his head.

i would go on net and have a look at symptoms and traits for being on autistic spectrum and see how many you can recognise in your ds.as for c**p service its the same were we are wewent private in the end best £400 i ever spent.

talking of money do u get DLA for ds

esmf73

Bolton Angel,

I know exactly where you're coming from - I have a 5yr old and a 3 (almost 4) yr old.

We've always had trouble with our 5yr old, but this last week of half term has been an absolute nightmare. GRRRRRR I'm going to be going back to the Doctors AND the school next week and demand that something happens as I can't cope with this for much longer.

Best of luck - I do know exactly where you're coming from and it's a lonely, soul destroying place as you (well I) always feel like I'm the only person on the planet that has a child that behaves this way.

Perhaps if we got them all together........:rotfl:If I don't laugh I'd cry!

boltonangel

mandy.h no i dont get dla for him, because i've not really taken many steps to get him diagnosed with anything i didn't know that was a possibility...but it certainly should be as I can't work anymore because no one will look after him.

thanks again guys.

mandy.h_2

boltonangel wrote: »

mandy.h no i dont get dla for him, because i've not really taken many steps to get him diagnosed with anything i didn't know that was a possibility...but it certainly should be as I can't work anymore because no one will look after him.

thanks again guys.

you need to apply now it takes that long to fill forms in and you dont need a diagnosis we were given dla before diagnosis, basically because ds behaviour and routines were so bad i kept a diary for a month detailing everthing i had to do for him that was more than you would for a child same age, including promting/arguing about doing things like dressing

but be warned its not nice seeing their behaviour and oddityies down in black and white i got tearful a few times but had to be completly honest.

their reply was to say he was a danger to himself and others so needed watchin 24hrs a day this website www.cerebra.org.uk have a good resource to help with form it says its for brain injured children my sons was not injured just did not develop right so same thing o and i also sent my timetable in with the form.

dangers

rainbow81 wrote: »

Just a side note, I'm not sure but I was under the impression that if your child's on an IEP at school then there is supposed to be a termly meeting between parents and the school to update on progess?? I may have got that wrong but that's what happened with us until we got the Statement.

My son had an IEP last year (YR 3) and he has one again this year because he goes out to work in a small group with the LSA for about 2½ hours a week. The fact that he went out in small groups was brought up at Parents Evening last October, but it was only in February that I was made aware of the actual IEP. Luckily I have trained as a LSA, so knew what it was, but had I not done this training, I think I would have been very confused. I subsequently mentioned the IEP to one of my son's infant school teachers and they were surprised that an IEP had been done. This parents evening, it was mentioned that my son continues to go out in small groups, but I have not yet seen the IEP with the targets on it.

Communication is great, isn't it???

Good luck with everything boltonangel.

boltonangel

would claiming dla for him mean i couldn't work at all?........i know i cant work now but there may be times that i can......to be honest i really want to get out of the house for some space!

mandy.h_2

no not at all its not means tested im going back to work on monday i took time out to retrain dla and its not yours its claimed in your childsname

its to make life easier my ds is 15 now and likes a bit of independance but frequently gets lost so it pays towards petrol to collect him, to replace things he breaks when in a temper which unfortunatley is usually somthing expensive like laptops,

it also pays for a babysiter if familiy are not avilable when we need to go anywhere as he cant be left alone with dd as it would not be fair on her he is not her responsinility.

it also contributes to cost of his many obssesions and hobbies

i got lady from department of work and pensions coming today to asses if ds is capable of maniging his own money
law says at 16 they get it in own bank, was a bit aprehensive about this but she phoned yesterday and asked all about him seems nice but i said i was not prepared to make that decision let them do it as ds has been aware of his "special money " as he calls it for a while and has plans to spend it god help us all