can anyone help me help this desperate mum...

[pickyvic]

hi all

my own son has AS, is 17 and at college. i remember having to right tooth and nail for a dx when he was 7.

I volunteer as a special constable and the other week i came across the most desperate mum in the course of my work. The only people who are trying to help her are the police. He was arrested for smashing the house up.

Her son is 14, he has now dropped (or been dropped) out of the education system all together,though she says he is bright. he definitely has something - either an ASD or ADHD or something - he can be violent but she says its when something triggers him. from what she described to me about his early years he sounds alot like my boy was.He doesnt sleep but no one had ever told her about melatonin.He gets anxious when his routine alters, he cant lose at anything, he cant queue, she described him as Jekyll and Hyde (how many times have i heard that about kids with ASD!!??) She rang me today. he has no dx. she says when she goes to the GP they just brush her off, saying that he is simply naughty and out of control. She knows its not that but she cant get anyone to hear her.

i gave her some numbers for Ipsea and the NAS and all the usual and even offered to go to the GP with her, (i also suggested she change her GP.) ive also lent her my literature on AS and given her a copy of the SEN code of practice. but this lad is 14 and she says he has missed out on an education. She has been to everyone she can think of, her GP, he has seen a Paed, she says she has a file (like we all do i suspect) of reports from various professionals which all say the same things but offer no dx and are meaningless to her as she cannot get him any help. She has just managed to find a child psychologist who thinks its ADHD, but he was put on ritolin before which did nothing to help in the past.The LEA keep putting him in EBD schools - i think that must be the worst possible solution - EBD schools are not suitable for kids with ASD/ADHD. He is statemented at band G whatever that means. (mine wasnt statemented)

how on earth can i help her? i felt like standing there while she rang her gp and going with her.
she is going to phone me when she has read the books i dropped off. ideas on where to go from here would be good please!
thanks

Can she ask for a referal to CAMHS, even without a dx they should be able to offer support & advice. Unfortunately she may have to go to her GP for a referal OR maybe the school could refer.

Poor lady, could so easily have been many of us

Sounds like you have given her fantastic advice, well done.

The people who help bestwith school are ipsea and SOS!SEN who are fantastic. Also she needs to look at the triad of impaitrmenst and refer to this when seeking help- I find it is useful.

I do think its worth telling her that his eduication is NOT destroyed, delayed yes but with help and support many people can get their schooling later- I am 35 and only gradiated last year, DH is 37 and starts in September: it's all out there once you can get the help to look

I am wondering about BIBIC?Cant DX but can actually give advice to help and techniwues (and can help with funding)- they take up to 16 so needs doing now, they have a website

thanks,
as you say it could have been many of us - me included. i had to hammer down a few doors to get a dx for my lad so i could feel her desperation.

i thought about googling and printing off some stuff, i lent her the Tony Atwood book on AS which im sure talks of the triad or impairments, ill give her some time to read through and i said we could meet up for a coffee when she has had chance to digest the info.

im personally convinced that he is on the spectrum somewhere, but i dont think anyone else had ever suggested it. (she was reading up on childhood bipolar.) he seems fairly typical of someone with ASD to me.

the problem is that because he is being arrested so frequently she thinks his path is set, and that he will end up in prison as he cannot control himself or his temper. God it depresses me to see how many of these kids are just written off.

ill do some googling and ill have a look at BIBIC...thanks for that. i have a feeling this lady is going to have to find some strength, pull her self up by the boot straps and get stuck in with a bit of gusto. i think she would find it easier if she knew what she was dealing with. the CAAMHS here have such a huge waiting list, but her GP will not support a referral. everyone is buck passing.

The NAS triad is fab (just google NAS triad) as it explains it a bit as well- have used for a not sure Mum myself

BIBIC did some reseaqrch years back on ASD kids who get in trouble with the police IIRC- might still be on their site?

DS1 is nine and uis registered to be seen by a specialist team aimed at kids likely to go into a life of crime; is there nothing like that in your area?

hi peachy - i dont believe there is but the problem is he has no diagnosis, so no one cares. he has been written off as a naughty boy - hence the EBD schools he keeps getting expelled from. no one can cope with him but i feel its because they are not making any allowances for his SN. Mum calls the police when he trashes the house, police turn up and arrest him. one of the sarg's cottoned on pretty quick that all was not right but couldnt get him assessed under section 136....no one would come out.
this situation is bloody criminal tbh, but his mum didnt seem very switched on and no one else is going to fight for this kid if she isnt. he has split their family up - dad left and eldest son moved out because of his behaviour. its so sad.

It's a difficult thing- apart from the obvious depression something like this can cause (and my ds1 is very violent so can totally empathiose) there's always the factor that some SN is genetic- so Mum herself might display some traits and therefore struggle to get help, support etc.

Is she getting DLA? She would clearly qualify and no DX is needed but you might get problems without a Paediatric assessment. Worth a shot, though. There is also the legal right to request a carers assessment, but I met with problems there as DS3's letter of dx had got lost in the post- they'll try anything.

Presumably there is SS involvement from child protection services? Perhpas she could ask for their help in finding an advocate to attend meetings? because I do think that the key is a chage in GP. But ther more she can take in the way of evidence, and if she can take an advocate so much better, the more likely her chances.

What do school feel about the whole thing? They could do what ours is doing for ds2 (dyspraxia) and provide a letter for the GP requestinga referral also.

The ritalin thing is interesting- the way I understand it ritalin is a stimulant that only has a moderating effect in children with clinical ADHD, and as such non response to ritalin could be grounds for requesting a reassessment in itself?

It's a shame the child is so old as what she could do with is a teenager based version of homestart isn't it?

there is no school at the min - he keeps getting expelled.

he is due to go again to yet another EBD school but he hasnt started yet. its just ridiculous. he clearly has major problems, yet no one is bothering - she said yesterday that she feels they are all just waiting until he is old enough to say "well weve done our bit - your on your own"
she said she is going to lose him one way or the other. really felt for her.

ill give it a week then phone. ive offered to go to the gp with her, so ill let her digest the aspergers book, but im not sure she will think its that because he is so violent. she has no internet as the son smashed the computer.
guess ill just have to see what she thinks in a week or two. thanks for the replies.

get her to give these belligerant wonders a call, they are amazing

thank you. i will pass that one on. (might be useful for me if college continue the way they are doing)