What does it take to get some help??

[nenevomito]

I lost it completely at the doctors today as I am at my wits end.

I'm still waiting 10 months after being referred to the clinical psychologist. I saw the community paed in august last year who did the 3di and ccc2 and a short assessment and said it was probably HFA / AS but that it would go to the multidisciplnary team in March for a final diagnosis.

I agree completely about the AS, but "probably HFA" doesn't actually help. DS's problems are a lot more complex than that and I want someone to bloody well assess him properly and get a better picture of what his problems are and an understanding of what I can do to help. For that he needs a proper assessment with the clinical psychologist.

DS just seems to be getting worse and worse. His anxiety is through the roof, School keep on asking me what to do about his behaviour and want me to go in every week so they can update me as he's struggling, but I don't know what to do and I don't know how to help him and there's just no help anywhere.

He's still getting upset by the voices in his head and I went to the doctors this morning to ask for help and got nothing. They can do nothing. They can do absolutely fucking NOTHING at all to help me help DS. What do I do? Seriously, what do I do when he's hitting himself on the head going "shut up shut up shut up" if I can't even get help from professionals.

The fucking doctor suggested I could look on line for advice and help, but then when I got angry and said I could look up things till I was blue in the face, but that didn't help as I was out of my depth, she said that as his Mum I could still try things without seeing a psychologist and then said that "Some online groups are quite aggressive so you need to be careful" .

I'm not ANGRY because of on-line help, I'm ANGRY that I am literally begging for help and no one seems to be able to help me.

I did get some help afterwards from a good friend who runs a support group and she got on the phone to chase the assessment centre who had.....Lost my fucking referral and that I needed to speak to my Paed as it was them who had referrred me.

No, it was my GP who referred DS last fucking APRIL. They found that and THEN said that they would send me out a letter in MID MARCH asking if I still wanted an appointment and then it would be another two months after that I would get an appointment.

So yes 12 fucking months, a whole fucking YEAR from being referred to even stepping foot into the psychologists office and 2 fucking months AFTER the multidisciplinary team meets to "diagnose" him when one of the people on the panel won't even have seen him.

Meanwhile I am absolutely at the end of my rag, DS is bloody miserable and I just don't know what to do any more.

Hi Babyheave,

re your comment:-

"He needs a statement and I've spoken to someone who is going to help me get it and have an appt with someone from the LEA next week to get advice".

Who are these people you refer to, both the first and second one (is that Parent Partnership?). A word in your shell like re PP; they are not always up to scratch here as they can and do work closely with the LEA in question. They are NOT independent of them.

Bet you a crisp £5 note one or other of the above will do all they can to put you off re the statement, I do hope I am wrong.

Remember as well it can take upwards of six months (6 months is the minimum) to set up such a document. I would apply now and ignore any subsequent naysayers; you do not need anyone's permission to personally write to the LEA requesting such a statutory assessment and template letters are also on IPSEAs website.

We here will also hold your hand through this process. Keep posting here too.

You need independent advice and I would also be speaking to people like ACE, SOSSEN and IPSEA. All have websites; use and digest all the information contained within these. It all sounds drastic but it is necessary honestly. Arm yourself as well with a copy of the SEN Code of Practice (this is also online).

I will also be mindful of aggressive support groups!.

Knowledge is power!!!!.

GS is great but never at a time we can do. I like my SG group best, because it's a social group rather than a support group so don't often do "speakers" tend to just drink coffee or wine and talk and then meet with kids in hoiidays.

I also agree PP aren't great tbh

PP told me that Our LA get so many complaints to IPSEA because our LA is full of mc parents demanding more than is needed for our children, not because they are a bunch of lying incompetents who regularly break the law which is what the letters to them from IPSEA imply.

OK here's my advice - strictly off the record ; )

(This isn't the "right" way to go about things at all but it is a way of cutting through the bullshit in extreme situations. Extreme too, so please only use an absolute last resort, not cos you are anxious and can't wait 2 weeks for a cahms appointment as this backdoor method does save lives but it's a loophole that'll close if abused iykwim. )

If you take a child to A&E at risk of self harm a proper shrink HAS to see them within 24 hours by law. Now the Maudsley hospital London has an autism unit (and the Maudsley team are possibly the ONLY team in the country with experience of very early onset schizophrenia as your kid is hearing voices- they have an inpatient unit at the Bethlem).

So you just happen to be in the Camberwell area of London next time your kid gets upset and as it's the nearest source of emergency help you take your child to Kings College A&E for help as it's just opposite the unit that can help.

My MP was as much use as a chocolate teapot but the letters are good to have on record, as are formal complaints to PALS/children's services.

We were concerned about my Dad and his behaviour. Doctors refused a brain MRI. After a week of my mum suffering horrendous abuse I called 999 and told them he'd had a fall and banged his head.

They gave him a CT scan and found a mass in his brain 8cm by 6cm. He died 6 weeks later.

Don't feel guilty doing what you have to.

Btw that 999 call was a year ago today.

Star - I'm so sorry to hear that but it does confirm that there are occasionally very rare instances where in order to get things done you sometimes have to be prepared to "do whatever it takes".

(Under "normal" circumstances I'm a natural conformist)

I'll never feel guilty about having 'abused the system' then or in the future if I genuinely feel it is the only way to access essential medical expertise.

FFS! Don't go telling A&E he's got voices in his head - they'll dx schizophrenia.!!

Complaint via MP and PALS is much safer route

You don't tell em anything bar you feel he's at risk of self-harm.

It's for them to then neutrally assess and diagnose the problem. Going where they happen to have expertise in these things means that assessment will be accurate as opposed to some idjeets "best guess".

Sometimes local professionals kick the can down the road as noone on the local team actually has the skills to help but professional arrogance means they'll die before admitting it to you the layperson. Instead you'll get "lost" referrals, notes, delays to appointments, vague references to "complex needs, "holistic approaches" and all kinda nonsense that can go on for years.

Babyheave I am so sorry you are in this position. I makes me soooo bloody .

Just a thought, but have you tried contacting a/the Crisis Team yourself at all?

The only way we got help for ds was contacting the Educational Psychologist Crisis Team ourselves. I was sure they would tell me he wasn't considered bad enough and tell me to go away and wait my turn, but no, they called me back within 24 hours, listened sympathetically as I blubbed in desperation down the line at them, took all the details of what had been happening, presented it at their team meeting the next day and we were allocated a 1:1 EP by the end of the week.

As part of their own assessment they did a lot of the assessments that ordinarily would have been done by the ASD team, thus shortening the route to assessment with the end result that ds's assessment was brought forwards quite a bit, because they already had a lot of the information they needed.

In addition, the EPs worked with ds 1:1 for, I think it was 12 weeks, at an hour to an hour and half a week and really helped him through, what I now refer to as his 'breakdown'. The EP then attended all the school meetings, sitting on our side of the table as ds1's advocate and made sure the school started pulling their weight.

Not all LEAs offer this service though. I wondered if it might be worth checking if your LEA has an EP or Child Psych Crisis line and just giving them a call. If not then it might be worth doing the same with the CAHMS Crisis Team.

The other thing I did, was call the assessment centre several times to ask where we were on their waiting list and whether or not we could be considered for any short notice cancellations. My GP told me to do this, as she said they can and do bump people up the list if they are a big enough pita. When I was told it would be 18 months until they saw him, I came over all desperate and asked to speak to someone who could talk me through/explain the process. They put me through to the waiting list manager, who had all sorts of ideas on 'other routes' - including the EP Crisis Line - but also gave me names and numbers for the ASD inclusion team who she informed be should have been involved with and supporting ds1 from the first moment AS was suspected. From that one conversation I made contact with some of the best professionals we have worked with, so really it was the tiny seed that grew into all the support and intervention that ds1 has received thus far.

In the meantime, get your basic letter off to your LA requesting Statutory Assessment, you don't need anyone to tell you if/when/how to do it, just send them a brief letter (you can use the sample on on the IPSEA website) saying why you want him assessed and they will send you everything you need to do it. Anything you aren't sure of, MNSN can and will help with. I will gladly share with you what my application was like.

What have you got to lose? If you do it and they say no, you can always appeal/reapply, but if you don't do it nothing will happen. I wish I had pushed for SA a year ago, but was convinced by some people I thought were on our side that we needed to wait for more evidence or we'd be turned down flat and probably would be turned down first time, even with the additional evidence. I finally put in my request the week before Christmas and ds is just going through Satutory Assessment at the moment, no need to reapply, SA on the first application.

Thanks everyone for your replies. I remember getting this advice last year and thinking "ahh we'll be fine, he doesn't need a statement anyway".

I am an idiot.

Yes it is Parent Partnership that I'm seeing - is that not a good idea?

I already told the dr about him hearing voices. He's only 5 so it would be a bit early to dx scizophrenia wouldn't it? Surely this is down to his anxiety?

You're not an idiot - you are just on a very steep learning curve and unfortunately learning the lessons that we all do eventually about not really trusting anyone except yourselves.

I would say by all means see PP and talk it through with them, they might have some useful advice, but don't just accept everything they say as gospel and don't let them talk you out of applying for SA. As I said in my last post, you have absolutely nothing to lose by applying but an awful lot to gain if it goes ahead.

Do see if you can find a number for a crisis line as well - you never know.

As for the voices, I have heard of a few children with AS and high anxiety hearing voices and yes, afaik its usually related to the anxiety and inner-conflict type stuff. Fwiw, I have an adult friend who does have schizophrenia and he was involved in a study that found that a large proportion of the population hear voices at some point in their life - its much more common than people tend to think. I suppose for a young child with ASD, understanding and interpreting the internal voice and conscience etc would be so much harder than it is for nt children and they are therefore more likely to interpret these things as 'voices'.

Many individuals can also have just one Pyscotic (sp?) episode in a lifetime due to extreme stress and never "hear voices" ever again. In most cases once the stress source stops so does the episode, never to trouble the person again (apply for that statement yourself today gal!). Given the stress lots of asd go thru I'm not suprised this happens to some of them.

Moosemama makes a really good point about understanding the internal conscience for ASD kids.

Understanding their own emotions is often hard too and I wonder if you could do some aba type emotional comprehension training to perhaps help while you wait for professional assistance. There was a good thread a few weeks ago on emotional skills with lots of ideas that might help. I've listed a strategy we tried above in the hope someone else will come along with some good ideas.

I spent a lot of time getting my son to map his physical response to red/yellow/green to help him identify how he was feeling. We then carried around red/yellow/green cards.

Red = scared/wetting himself/tummy felt odd/smashing things/running away
Amber= face felt hot/"I don't want to"/shaky hands
Green = happy/calm/peace/friends

He created the red/yellow/green behaviors/physical responses himself with help and then I asked him how he was feeling on an ongoing basis - sometimes warning him when he was red or yellow or pointing out green till it clicked for him. Use ABC to help him work out where he is. This got us onto the first rung of the ladder as the goal was to be "green" as much as possible.

I was aiming for him to hold up the cards when needed in the classroom etc but he learnt to verbalise "help yellow or red" instead. The adult then needs to help a child at yellow to get back to "green". "red" is now pretty rare for us.

It was a very very simplified version of the "incredible 5 point scale", whch he was too young and unsophisticated for.

Very early onset schizophrenia is not the same as other forms by a long shot. Like type 1 diabetes the medication, can and does work. It's incredibly rare & has the potential for far better outcomes than many other cahms type problems but not many child shrinks will ever come across it in their career.

Parent partnership in most areas are on the LEA payroll, so sadly they tend to be good at general advice but not at getting "stuck in" to the hands-on nitty gritty struggle esp if you find yourself "heading in a legal direction". So talk to them, but accept their limitations as to how far they can help, even if they want to, often their hands are tied.