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.

Write a formal complaint to the NHS / PCT whoever it is so it is writing - say he has been left without any mental health intervention for 10 months at serious risk etc. Then complain to your MP and give MP a copy of your complaint letter. NAS have a leaflet here on parents rights re mental health. You may want to give a copy of this to the MP (mine thought autism was a mental health condition ), MPs were banging on last year about extra money for mental health for young people here is Lib Dems saying there is £400 million for 'talking therapies'. Ask your MP to find out where the money has gone.

Absolutely second what Agnes advised.

Those who sit in silence get seen last - you need to kick up (which you're doing) but to the people who can help - which GP seems unable or unwilling to do.

Best wishes

It's an arse and completely not on. We have had similar problems accessing help for dd1 who has a dx of autism. We saw someone in June about her anxiety issues and not leaving house, refusing to eat ect. They too lost the referral and I also went to GP who said he couldn't do anything either
Finally due to see someone in few weeks but no dd is onto self harm, could have prevented this if they pulled their finger out their arses

Keep pushing, you will need to

My aren't we aggressive

So sorry babyheave but you have the right angry attitude rather than a helpless one. The advice here is spot on. Good luck.

Thanks all, it would help if I could stop crying at the mo but I'm rapidly reaching the end of my tether.

I support us financially so I can't cut my hours an DH doesn't want to, I have another small dc who needs my attention too, and I look at DS and could weep as I want to help him and he's looking to me to help him and I just don't know how any more.

You do know what to do. And you are doing it. Why should you have expected the people who are paid to help to fail him so sspectacularly?

Take a breather. Take stock. Start writing.

And limit your crying. You are frustrated but not helpless. There is much work to do.

That was supposed to be an encouraging wink btw. I'm not laughing at you.

I remember when you were a timid little soul Star

I know. It's a shame my earlier posts had to be deleted because the difference between them then and now is pretty unbelievable. I am unrecognisable, and whilst more effective, not necessarily a better person.

My ds is though!

And it was you and others on here who often made me cry with your often harsh words and challenge that meant I was able to move as fast as I did.

After getting a bit of a slating on here I would have my arguments ready for the real world, and know in advance what they are likely to throw at me.

Aww. I didn't realise that I came across so harshly . Sorry.

I remember when DS's problems first started looking for info about Statements on the internet. I came across this site where some very disgruntled father was absolutely apopletic with anger about his LA and having a complete mega-rant about the injustice he'd faced.

I remember thinking at the time that he must be some sort of nutter as nobody could have been treated as badly as he was complaining he had been.

Fast forward a few months and I was him

Anyway - I'll continue to work on my anger management issues

My ds is though!

That makes it worthwhile

Tbh I was probably asking for harsh treatment.

It is one thing to believe in the system from a user point if view but quite another to have believed things from having worked within it.

I think I probably had ridiculous expectations of do-gooding way beyond the average user and probably pissed you all off whinging that they had arranged an 'opportunity class' for us that I couldn't access because I couldn't drive a d buses there don't allow buggies, and they wouldn't provide transport etc.

I think someone told me that transport wasn't their problem and opportunity class would be shit anyway. Quite so.

Lol

Would concur absolutely with what you've already been advised.

I have seen too many of my own friends get fobbed off in not too dissimilar a manner with the end result being that help takes even longer to get, in some cases years at great cost to family life and child.

With regards to school I would start applying for a statement now; they are seemingly are clueless as well. They want you to go in every week for an update (been there myself and done that, its soul destroying. What helped DS ultimately with regards to school is a statement, nothing else would have cut the mustard here).

You are truly your child's best - and only - advocate.

I'm really beginning to get that now, Attila.

At first when this was all so new, it didn't seem to matter so much. DS seemed to be getting on OK and maybe it wasn't ASD so I could give or take any intervention.

A year on and he just seems to be getting worse and worse. Out of the comforting environment of reception, with a SENCO who has admitted that she's never dealt with 'these problems' before I am getting a swift lesson about how I can't rely on anyone but me to sort things out.

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. Sod the school. I also have the phone number of the assessment centre and will be calling every day. I am going to become that squeaky wheel.

I may also buy myself a punch bag and a bottle of Gin. For medicinal purposes only.

Thanks as well Starlight and WetAugust and anyone else who has posted. Just be careful though. Some of these support groups are aggressive you know

That's why I avoid a certain local support group. It's all very negative and angry and I'm not that mum just yet.

My local support group advocates the liberal use of wine. This is a good thing.

Sounds like my cuppa tea Lisa, where is it?

stevenage, called angels

Oh them lot. Are they the bunch that take over half the seating at Gam?

someone of them yes, but mainly they all know each other from AS friends (which folded last year).

I don't really DO support groups.

I called a few but usually the next meeting has an invited speaker from the LA and that is all I need.

I want to go to get support not a heart attack!

I like GS though. Because it is on a Saturday there's not a hope in hell of getting a LA bod there.