i am shaking

[thriftychic]

i have just phoned camhs to complain and they are speaking to the manager and ringing me back.
ds13 hasnt been diagnosed with any particular special needs but we have been going thru hell with him for the last 2 years. sorry if i am posting in the wrong place.
we were passed on to a different man last august , he didnt contact us in for months because it turned out he had been ringing the wrong number. then after we met with him this is what the summary was:

the letter he sent us says :
we agreed the following care plan:

-to contact Mr wells at school to discuss concerns about behaviour in school

• arrange to observe in the classroom
• contact you after this to discuss the next steps

i will speak to you in the new year.

we have heard NOTHING despite a phone call from me a few months ago which the camhs guy never returned , i left my number with the receptionist.

i decided that they were worse than useless anyway and had only so far made things worse and i was giving up with them but this morning after a particularly upsetting week with ds2 i have phoned to complain.

i am not sure now what i actually want from them now because i dont trust they can help ds2 anymore .
does anyone have any words of wisdom ? i am constantly on the verge of tears all the time this week.

I am so sorry you and your ds are being let down like this. Unfortunately, it's a common story, that many people here will be able to identify with.

I sorry I don't have any experience of CAMHS personally, so am not much help really, but lots of people on here do and I'm sure someone will be along to offer you advice really soon.

I just didn't want you to feel alone and know what it feels like when you keep checking your thread for answers wanting someone to at least have heard.

The only advice I can think of is perhaps to tell us a little more about your ds and his difficulties, to see if we can think of a different route for getting him some support.

I have a DS similar age and also have experience of CAMHS too.

IME they are like any NHS area, massively over worked and under resourced and if you want their help then you end up having to hassle them on a very frequent basis. Wrong I know, but they are doing a hard job under difficult circumstances - same as us parents!

So in terms of advice re CAMHS - I would say, keep ringing them. You do need to have an idea of what support / help you want though, otherwise things do slide.

And what moosemama said about giving us some more info. There are so many knowledgeable people on this board who may be able to give you lots of links / strategies / techniques / ideas.

thankyou moosemama , i really do feel terribly alone. i have a dp and another son but dp is making things worse (although he doesnt mean to )

i change my opinion frequently , i dont know whether ds2 has some problem that could be diagnosed or whether ive just done everything wrong and this is the result

i have posted on here about him before but i think i had a different name.
problems all started when ds2 went to high school but looking back maybe he had self esteem issues and such before then.

the first school said they thought something was wrong and suggested aspergers . i still dont know if maybe it was just that ds2 was having a hard time with the transition and them jumping in saying something was wrong with him actually caused some of the problems. as he labeled himself a freak then. and the school were taking him out of lessons and making a show of him in front of the other kids , probing him as to what was wrong etc etc i changed his school and for a while he was just as bad.

he seemed to improve in year 8 but the second school were the exact opposite , i.e noone can have a problem just bad behaviour, his reports were saying he wasnt mixing , he was rude, he wasnt doing his work and he seemed angry and negative all the time. After i went in to school and told them how hellish he is at home and that maybe there is a problem nobody has diagnosed suddenly the school reports improved , which is good but the sceptical me wonders if thats really the case.

His behaviour is awful everytime the slightest thing doesnt go his way, he trashes the house , shoves me , tries to jump out the window , refuses school . gets the wrong end of the stick all the time , has no proper friends , lies , has stolen my money , hates himself , scratched arms with compass a few times . totally totally self centred. just completely flips , its like looking into the eyes of a stranger when hes like that.
in between times he can be fairly ok but we are treading on eggshells or rather i am , dp is like a red rag to a bull.
he has had a couple of sessions with the psych at camhs a year or more ago and she said its not aspergers.

yesterday he couldnt find his p.e kit he was screaming at me that it was my fault and being really crazy over it , we found the kit under the bed in the end but insists and still is today that i put it there. yesterday all that led to him saying he hated me , i am not his mum anymore , he wasnt coming home form school , he might aswell kill himself . then he set off walking to school (usually gets a lift) and kept texting saying he wasnt going he was sat somewhere else.
His behaviour is really bad and i told him he couldnt go on his xbox which then meant that when he got home and he had no xbox he started again , painted my nail varnish on the wall and tipped the bed upside down.

i know that his behaviour is unacceptable and i always give a consequence to it as even if he did have special needs he would need discipline but i do think that his thinking is all skewed and no one sees that. he once spent a whole day throwing tings , shouting and kicking hell out the back of the seat when we had to go out in the car all because i had got a speck of bleach on his trainers (i had said i would buy another pair but it was useless)
he also gets into a hobby and eats sleeps and breathes it , at the moment its fishing and if dp doesnt take him fishing at the weekend and we all try to go out as a family he cannot handle it . all walked out of nandos last week because of ds2. he said he didnt like it in there and i even offered to sit in the car with him so that dp and ds1 could eat something but it was all useless and we couldnt stay in the end.

Thrifty you are not alone. Please keep posting, there are lots of people on here who have similar issues with their dcs and I'm sure between us we can figure out the best way to access support.

If it were me, I would approach the GP explain all my concerns and ask for him to be referred for a full assessment. The absolute best referral would be to a developmental paediatrician, but they are few and far between, so most of us end up seeing a community paed.

Some of the things you mention eg the rigid thinking and obsessive hobbies could be seen as red flags for aspergers, but obviously no-one on here can or would try to diagnose. There are a million and one other things it could be and/or it could be behavioural rather than developmental.

I would advise you to spend some time typing up a history of your ds type document. Start pre-natally, what was r like, any complications etc, same for the birth and postnatal period and then work your way through his life, noting when he met his milestones and any issues, problems and concerns that you have had at different stages. Every professional you meet will want to take this information down, so you are saving having to keep repeating yourself and helping to clarify things for them at the same time. If possible, send a copy to each professional you get an appointment with prior to the appointment to save time at the actual appointments and make sure they are fully informed before you walk through the door.

Have a look at the National Autistic Society's pages on Aspergers and see if you recognise your ds in their descriptions. If you do, then print of the pages and make a note of which behaviours are ringing alarm bells for you to discuss with the GP.

If your GP tries to send you back to CAMHS, stand your ground and push for a paed appointment.

I have to go now, but will have a think and pop back later.

thanks for listening x

does anyone here take antidepressants to help them cope ? i have taken them for a while just half a tablet but stopped them about a month ago thinking they werent really doing anything. now i realise they were , they mustve had a slight numbing effect because now i feel properly broken hearted.

Hi and welcome to the board.
What an awful situation for you thrifty, We had a nightmare trying to get a DX for Dd3 but in the end it was CAMHS who helped us.

In my area they just happen to be good but they are stacked out with children and are getting most of the ASD referrals too even though it is not a mental health issue.

I agree with moose about making some notes about his behaviour. I kept a diary while I was waiting for the referral to camhs after the developmental paediatrician who Dd3 was assigned to retired and no one seemed to be able to tell me who was going to take her on their books.

The diary was the one thing that made the proffs sit up and take notice, I recorded any behaviour/anxiety/quirky issues, what caused them [if I knew] and how I dealt with them and it is that that is really important. You need to show that you are being as consistant as possible otherwise they might try to blame your parenting.

I dont take AD's but I would say if you felt better on them then maybe you need to stay on them. Your MH is really important because it is such hard work parenting a child with this kind of problem.

You have come to the best place for advice, there are loads of parents on here who are really knowledgeable about every area of SN's including legal stuff WRT schools.

keep coming on here for help and advice from a lovely group of people

Hello again thrifty.

Ineed has offered some great advice. Lots of us keep diaries, including anything significant that happens at home or school and how it was handled, as it's easy to forget something due to the stress of appointments and dealing with professionals and it also helps to give them some insight into the reality of the situation on a day to day basis.

As for the anti-depressants. I think many of us have used them at some point and there are a few mums here who are currently finding them essential. I once read somewhere that statistically, there is a higher % use of anti-depressants among parents of children who have SNs than there is in any other sector of society.

I agree with Ineed, if they were helping, then stay on them. You need to take care of yourself properly, or you will be no good to anyone, including your ds.

What, if anything, have the school done to support your ds? They have identified clear areas of need, such as not mixing with his peers, failing to complete work and addressing staff inappropriately/rudely. If they have identified areas of need, they should be doing something to address them.

Have you spoken directly with the SENCO about your concerns? In addition to visiting your GP, I would ask for a meeting with the school SENCO outlining your concerns and asking what they can do to help.

yes , sounds like a plan , will start a diary. camhs didnt call back . the only thing the school have suggested is sending ds2 to the 'think' room a sort of chill out room but that went down like a lead balloon. made him worse as he hates to be any different from anyone else . going to camhs made him worse because as soon as he realised it was a mental health service he decided we all thought he was a ' freak' and acted up even worse.
they suggested anger management but after the first one to one session with ds2 the camhs woman decided he was better off with a man and passed him on to the guy who didnt contact us for weeks because he had the wrong number and it was like starting from scratch.

omg thrifty hugs, unbelievable.....I have noticed that reverse psychology seems to work on schools eg If you say behaviours fine at home they say its terrible at school, when things start to go down hill at home due to school stresses they say everything is fine at school????

Why don't you contact the educational psychology department for your LEA go through the school reports and your concerns at home and mention CAMHS visits and ask them to advise

If you put in a formal complaint to CAMHS that will get them responding I can guarantee that.
Sorry to hear that you have had a lack of support from CAMHS. Maybe the clinician was on long term sick and nobody was able to pick up his caseload or something like that. Sadly CAMHS is totally deluged with referrals and ridiculously stretched these days, but that is no excuse for you not getting a service.

Good advice feelingchirpier. You can now self refer to Ed Psychs in our area, so it's worth checking if you can do the same. You should be able to find their number via your LA website or by googling and at the very least have a chat with them about your options.