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Offered no support as I'm too 'on the ball', has anyone else experienced this?

(25 Posts)
CatchingMockingbirds Sat 08-Dec-12 16:41:39

DS (he has ASD) was at SALT for a short period of time but I also done a lot of work at home with him and would look up certain tasks, different approaches etc on the Internet and do them with ds. I'd obviously tell the SALT and she was very impressed but then eventually said she was going to sign DS off SALT because I offer him so much support at home.

DS was also under the support of camhs until very recently when again I was told that they were very impressed with all the work I done at home with him and they felt that they couldn't offer us anything that I couldn't already offer him. They said that if I wasn't so proactive, educated (I've never even been to one ASD course hmm), and on the ball with regards to DS and his support they would be offering me lots of support and different services.

I mentioned all the things I still struggled with, his very restrictive diet, his limited social skills, meltdowns and obsessions (like how he obsessively claws at his skin until it bleeds) but the reply was 'oh but you'll figure something out, you're so great at managing him.'

It's a lovely compliment but I feel like we've just been dropped and left to it on our own. We've got our first OT appointment soon and am worried that the same thing will happen and we'll be left to do it all without any help or support.

Is this completely normal? I feel like DS needs support from these services and obviously he qualifies for it otherwise he wouldn't have been seen by them in the first place. Are parents normally left to their own devices and have to support their children by themselves with very little outside help or do I have an unrealistic idea of what support he would be offered?

TheLightPassenger Sat 08-Dec-12 17:49:48

IME whilst it's normal to be offered somewhat limited NHS services, explicitly saying that if you were less clued up, your child would get tons more support is shock.

Yup.

At diagnosis I had read the books they suggested so was told to just google if there was anything rlse I needed yo kniw.

Later when I begged for help we were told how marvelous we were and how well we managed and how great we were as a fsmily. So there was nothing the could offer. Despite DD not being able to go to school, various broken doors, bones snd me weeping.

Complete cop out really. Because we read some books and were able to ask for help there was nothing they could give us.

swanthingafteranother Sat 08-Dec-12 19:02:07

We were offered help in particular areas which were cause for concern, effect on siblings - so offered Family Therapy for that reason.
Otherwise I would say we had received no "personalised help" at all, apart from school doing social skills with ds once a week, and being very kind to him/accepting of his quirks.! Tbh we were signed off immediately, as ds wasn't presenting with any anxieties or violence, as long as school were kind and friendly to him.
Other people I know with ASD children whose children were showing terrible anxieties did get personalised help for that child from the same service that had signed us off, ditto problems with food = referral to dietician etc.

However I found the minute ds didn't go to school, and I rang SEN saying he was refusing, they would work extremely hard to support him in school. I am surprised that the threat of low attendance didn't get the school to access some help on your behalf.

auntevil Sun 09-Dec-12 12:17:38

Yep, been deleted from lists as they can offer nothing that we're not already doing.
IMO, its just lazy and another way of getting their throughput rates looking better/keeping costs down.
OT and physio have been the best - partly because they have equipment that it would be unreasonable to expect a family to have at home.
I did ask my GP to refer DS3 for something - and he hadn't a clue what I was talking about, and asked to read my notes shock .

HotheadPaisan Sun 09-Dec-12 12:53:24

I am 'resilient' I was told whilst trying not to cry about needing support. Also, watch for levels of support being decided on basis of diagnosis, basically you need ASD + LDs to get to the next level, nothing to do with need or family circumstances, is crazy.

lingle Sun 09-Dec-12 13:11:06

yes, I had this. nice in a way, but leaves you feeling rather lonely.

HotheadPaisan Sun 09-Dec-12 13:27:35

There does seem to be a lack of services for ASD around here, it's very odd, especially being as the children's disability team says that 85% of their caseload is children with ASD.

creamteas Sun 09-Dec-12 14:26:06

My ASD DC were discharged on the day of diagnosis from CAMHS and Community Pead. We were told ASD is not a mental illness therefore outside their remit (despite my DD self-harming when anxious),

My DS did have a 4 session handwriting course (also has dyspraxia) but no other support has ever been offered.

They are not deemed to have sufficient 'problems' warrant NHS support and it is an 'education issue'. We also lost the SENT appeal for statements as they are both HF and so therefore did not qualify for educational support either.

Sometimes I wonder if I hadn't try so hard to help them, if they would be in a better position.

CatchingMockingbirds Sun 09-Dec-12 15:41:00

It's awful that so many others have experienced this too. creamthats how I feel, that DS would have more support if I just say back and didn't bother to help him. As others have said, it does feel like they're just trying to get us off their books to keep their numbers down.

Wrt the LD, DS scored quite low on his cognitive assessment (2 parts under 15th percentile and the final part around 50th percentile) but aside from a meeting where they read out his results we weren't told much else about it, we've just been sent on our way and left to deal with everything on our own. (If anyone knows much about cognitive assessments please pm me - I've so many questions!).

Hopefully the OT will be more helpful, they're specialised in ASD too which is really good.

ilikemysleep Sun 09-Dec-12 20:42:24

I didn't get offered any support, but when I later approached with a specific query (about ds's very reluctant communication, since understood as selective mutism on top of his autism) they happily accepted that referral. I get the impression I know too much for any of their generic supports, but they are happy to do anything specific I ask about.

inappropriatelyemployed Sun 09-Dec-12 21:31:52

The reality is that you are likely to know much more than the so-called ASD 'experts' out there, pumping out there generic, onse-size fits-all provision.

So yes, while it is wrong that not all parents are supported, my experience is that you can fight a great deal for, and waste alot of money chasing 'expertise' which you could find just as easily in a book, on google, or more likely here.

There is nothing worse than fighting to have these people involved in the assumption that you are child is entitled to this help and then discovering these people (a) don't know your child at all (b) have nothing to offer and (c) make life a whole lot worse because they are then listened to more than you.

AgnesDiPesto Sun 09-Dec-12 22:04:06

Yes the SALT tried to get rid of us several times on the basis 'we were doing all the right things already'

I'm sure there was also a feeling with LA that we were the sort of parents who would home educate etc and DS would be ok - as very similar children were offered places at special schools where DS was refused again and again. Many of those children had its fair to say less able parents and I think to an extent they did prioritise children who they knew would not get the right support otherwise

We went out and paid for ABA - got ourselves trained in that and found out that we were not doing all the right things, there was loads more we could be doing and lots of expertise out there head and shoulders above anything the LA or NHS have ever offered us.

We took that evidence and applied for a statement and were able to point to all the piss poor advice we had been given - and all the times we were fobbed off - as evidence the LA could not meet his needs and got a tribunal to order his ABA programme be funded.

zzzzz Sun 09-Dec-12 22:18:00

Oh yes we are bloody marvelous......how fucking convenient for everyone.

Honk honk

steelev48 Sun 09-Dec-12 22:20:11

I've had two or three professionals now state that my son would have had a statement by now if I hadn't helped him so much over the years. It's so wrong.

MrsDeVere Sun 09-Dec-12 22:25:06

I have seen this from both sides of the coin.
As a parent and as a professional.

Unfortunately its only going to get worse. We have a huge case load and we now have to prioritise families with the most going on and the least support.

To be fair on a lot of those families it really isn't down to laziness or slackness that they are not able to do as much as some of the rest of us.

BUT it is still not right and it isn't fair and it is very frustrating.

I don't know what it is like in every area but I know in mine that most teams have been reduced to a tiny percentage of what they once were.

Physios, OTs, SALTS etc, everyone is affected.

Its no comfort to families to have to hear that old rubbish 'we are overworked' though. sad

Its just take me TWO years to get my DS into therapy for some very serious and complex issues.

BUT if you meet the criteria for treatment keep pushing.

I wish I could be less depressing. Sorry.

Shellywelly1973 Mon 10-Dec-12 01:06:49

Its wrong but its the way it is...

I remember nor being able to comprehend why HCP'S didn't care when i started to deal with the professionals.

I quickly realised its about economics & resources.

streakybacon Mon 10-Dec-12 07:54:10

I suppose what we can take from this is that a great deal of 'professional advice and support' is at a very basic level and can easily found by any reasonably intelligent parent who has a mind to search for it.

Maybe that's what is meant when pros say you'd get a lot more help if you weren't so on the ball - it wouldn't be relevant support as such, but the basic info that you could find without much effort. Unfortunately there are a lot of families out there who don't have the capacity to find out for themselves so I guess it's those people who'd get the resources, and not the proactive, hands-on parents you find on forums like this.

inappropriately hit the nail on the head when she says that parents often know more than the pros do. I guess we want them to have more expertise because we don't want to have to make this journey alone - it's quite a scary prospect but in practice most of us do have to find our own way as there is so little practical individualised support available.

zzzzz Mon 10-Dec-12 11:43:58

streaky I think that's a very fair synopsis.

I do think we need centres of excellence. I don't think they exist anywhere, but that's really what's required.

lingle Mon 10-Dec-12 13:27:34

inappropriately hit the nail on" the head when she says that parents often know more than the pros do."

I knew more than the pros -in- -the- -end-

But not at the beginning. Plus it took me some time to accept that there were underlying sensory issues.

All of which wasted time in the crucial 2-3 period.

HECTheHallsWithRowsAndFolly Mon 10-Dec-12 13:32:54

Yup.

some of the 'experts' who've come our way have even said we know more than they do (about the field. I could understand it if it was about our children!) [boggle]

It's in all the notes that my husband used to work for social services, I used to work with adults with LD and then we ran a care agency supporting people with LD and/or MHP.

So they seem to see us more as colleagues than parents hmm and they certainly don't seem to get that perhaps we might like a bit of support from time to time grin

lingle Mon 10-Dec-12 13:33:27

oops at underlining incompetence! I think often we are amazingly expert by the time our child is four - but by then the most critical period is already in its latter stages.

solutions please?

Dev9aug Mon 10-Dec-12 14:00:25

*But not at the beginning. Plus it took me some time to accept that there were underlying sensory issues.

All of which wasted time in the crucial 2-3 period. *

spot on.

Dev9aug Mon 10-Dec-12 14:06:49

we have found that even the people who are providing services tend to know only about their field and nothing else. I have been told numerous times that all children with ASD are unique and not one size fits all. I say its complete bollocks as I can see reading past threads that the things which worked for one person generally have worked for others as well. You need somebody to bring all the services together, maybe something like this.

www.childpsychiatryindia.com/

CelstialNavigation Mon 10-Dec-12 18:40:10

IMO this "you're doing everything necessary" line (patently untrue) is is right up there with "but i hope you are taking care of yourself" when you are being refused respite.

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