Ludicrous- rant!

[Jimjams]

Don't want to start a private vs State discussion again, but just wanted to comment. AAAGGGGGHHHHHHHHHH

I have spent the last couple of days accessing speech and language help for ds1 from the States. I have received more advice and suggestions from SALTS there than I have from the NHS in the last 2 and a half years. Some of the suggestions are impossible in the UK (like - has he seen a neurologist- I wish!!!). But lots of helpful practical ones as well. A SALT has offered to look at a video of him (for a fee- but cheaper than a private SALT session here) and she appears to be the most respected specialist in verbal dyspraxia in the States. Someone else has asked another professional for advice on my behalf.

Now obvioulsy this is great (thank god for the internet), but slightly ridiculous as well! Surely I shouldn't have to go to the States to try and get answers? Why on earth can I get more helpful advice from 30 minutes talking to strangers via the internet than I can from seeing the so-called professionals here.

And why- do the professionals in the States have lots of positive ideas when then idiots over here seem to think there is no point even trying because it's a)too difficult b)will take too much time and c)will cost too much money.

AAGGGHHHHHHHHH!!!

I agree entirely - it's utterly ridiculous! However, it is marvellous that you can get this sort of information from the internet.

In answer to your question though, the professionals in the states all get paid lots of money (from you personally or from health insurance) for all their ideas. It's in their best interests to come up with as many possible treatments as they can. Coming up with ideas like the US have done costs the NHS money - big difference! That sounds really cynical - sorry!! I don't mean that they're going to come up with ideas just for the sake of it but rather that they have no cost restraints on their suggested course of action.

I do realise that soupdragon- and its for reasons like that - that I woud be wary of private ivf clinics (always worth a punt to them- sod the human cost). But it's not really that that I'm getting at. The NHS hasn't bothered to asssess ds1 properly, they haven't bothered to provide him with any therapy, and they don't even seem to see this as being wrong. They seem to think it is right not to bother giving a child who can't pronounce a single word correctly any speech therapy- just becuase he is autistic -how can that be right? Especially when I believe a lot of his autism exists becuase he can't communicate effectively becuase he can't bloody speak- not won't- can't!

They don't even seem to be trying to improve the system. The professionals don't seem to have even read any research carried out over the last 10 years. Yet every extra year that we wait for some therapy is making it less likely that the problems will be fixed. If you read the government policy on autism- it says that early intervention is essential for a good prognosis- where is it? Waiting over 2 years for SALT and 3 years for OT is not early intervention.

Anyway didn't want to make this political, it just upsets me too much tbh, just wanted to let off steam.

jimjams, also not wanting to debate but lots of sympathy and just a thought: if the government's own policy on autism says it believes in one thing (i.e early intervention) then who is responsible for implementing this policy? Is no-one/no dept. responsible for enforcement? Sorry, I'm sure you've been down every road but I just wondered. Why have a policy (which presumably doesn't become policy unless it's been signed by people) if you don't bother following it? Is there any way the health authority could be hoist by its own petard sort of thing? Apologies if this is complete pants, I have no experience of this really, just butting in!

www- it isn't implemented as there are no staff.

For example- Everyone has said that my son needs an OT assessment- by everyone I mean every professional (including the peadiatrician) who has been in contact with him. I would like OT to be in part 3 of the statement, as I believe it is an educational need for him (anything that is required for education goes into part 3). His fine motor dyspraxia is so bad that he can't hold a pencil, can't cut paper- surely that's educational. If something is in part 3 this then makes the LEA legally obliged to provide it- BUT if I did that- there would still be no OT available - so I could take the LEA to court, the court would find in my favour, but there would still be no OT available. So what actually happens is that OT is put in part 5- where it becomes a "health issue" and then no-one is legally obliged to provide it so no-one does.

The whole system is utter crap. I am meant to have a socail worker. Where are they? My friend has 2 kids, her dh is away at sea a lot. He dd is autistic. She rang SS to ask for repspite and got given the number of a nanny agency!!!! If we could use a bloody nanny agency we wouldn't need respite in the first place!

Actually there wa a fantastic piece written by Nick Hornby for the Observer on all this sort of stuff. I'll try and see if it exists on their webpage later and post a link if it does. It touched such a chord with me it is pinned to my noticeboard in the kitchen, and when I get really stressed- I take it down an read it. He's obvioulsy far more eloquent than me- and although you can feel his anger and frustration- it is very amusing.

The all parliamentary group on autism has just produced a manifesto to be introduced by 2007? 2009? can't remember -something like that. t all sounds very good, but there is a huge gulf between their ideas and what is available now. Can't see it happening myslef.

Here's the Nick Hornby article

Brilliant!

www.observer.co.uk/Print/0,3858,4353211,00.html

Oh god just reread it- most definitely not trying to start an MMR debate- more interested in the lack of education, lack of health services part of the article.

Hi Jimjams, nice to speak to you again. I agree with you on the WHY should we have to look elsewhere for answers. If it wasn't for the internet I would only know about half on my sons condition.I have found a similar condition called ISODYSENTRIC-15 (except that his chromosones are all there) I told the consultant about it a few weeks ago and he said "the wonders of the internet they are finding things all the time." Our consultants are very good though and they have told us as much as they can as they dont know what is wrong with him, they have tried and have given him every test known. But as a mum I need to know everything and I wont stop until I find out what is exactly wrong with him. I must commend you for your determination on getting help for your son. You have my total admiration.He is so lucky to have you as a mother that will not give in.
P.S My son only moans and I have figured out his needs from the type of moan.(took a long time though and quite head wrecking)How does your son communicate with you?

Sorry jimjams posts crossed.

Just read that, thanks Jimjams.

And thanks for your reply. I can see how anything only due to be implemented in 07 isn't much help to you now. It is all sad and outrageous, I'd be angry too in your position.

jimjams, no wonder you say the education system is unfair. I wish there was something I could say to make it better for you. All that energy you put into getting help for your son only to find you are stuck in a catch 22 situation. It must be awful to know your ds needs help right now and you just can't get it.

I have some experience of this double talk and slowness due to lack of funding. Getting help from the social services for my mother when she was ill took me literally days of phone calls. Her needs changed so swiftly as her illness got worse and worse, and the social service assessments never kept up.

At least you have been given some more postive answers, but so sad that you had to go internet surfing to get them.

Jimjams , so sorry you're going through this sh*t at the moment. As you know, I have knowledge of having a special needs child - though my ds doesn't seem to have language problems 'yet'. We too have been told OT wait is at least another year - totally ridiculous with CP. One thing i have to say is that i think its appalling you haven't seen a neurologist, didn't realise how'lucky' i was that we have a joint appt with his paed and neurologist together ,every six months. Sorry no advice just lots of sympathy,

Jim Jams - I just have to say - You're my hero! From what I've read of your posts you sound such a strong, intelligent woman. Your son is blessed to have you as a mum, as i'm sure you're blessed to have him (although it may not feel like that some days!!) I know very little about autism but from my little contact with children who are autistic it looks like the hardest work and I just wanted to say that I have massive respect for you, you sound like a fighter and a great girl!
The only thing that worries me about Charlotte is her speech development and that's the only area I seem to be getting the least help in. Have taught myself Makaton but I want to know more about what I can be doing to give Charlotte the best possible start in her speech and language.
Good luck anyway, if anyone can fight in this corner you can. xx

Thank you all- your posts have really cheered me up! Feeling calmer now anyway- was just very fed up this morning! I don't think I do any more than any other mother of an SEN child though. We all have to fight for every little scrap!

maryz- I suspect you may be right. We got DS1's autism label when he was 30- and it has really helped access the autism specific services (such as an Early Bird course). Unfortunately once they have the autism diagnosis they can't seem to cellect another one. Even though all the text books say autism often comes with other conditions such as dyspraxia- they won't diagnose it- therefore you get no help. DS1 really needs a diagnosis of verbal dyspraxia now - as he so desperately needs SALT. doormat- he kind of has his own language. So anything with an "or" sound is mmmm (eg door, floor, George). Anything with a "j" sound is Bum! (eg giraffe, Josh) Lots of words are "an". Fire engine is ba hmm hmm, As you can imagine most people don't understand. He also uses moaning a lot! And yes different moans mean different things. If he tries to say a sentence he loses all consonants and everything becomes vowels and intonation. We were reading the book- hand hand fingers thumb (great book btw) earlier. he has memorised the whole book, but says it all with intonation only. All of this points ot verbal dyspraxia. Also he has fairly obvious motor dyspraxia so it's all very likely.

Unfortunately the big assessment he had at 3 was carried out by the most useless SALT in the land (supposed specialist in autism- and it;s not just me I've met 8 people now who have been through her- everyone said she was useless). I tried to talk to her about his speech problems, but she refused to listen to him speak and then told me he couldn't and wasn't trying to speak at all. He tries all the time!!! It was like talking to a brick wall. I did get into a row with her in the case conference, but peadiatrician believed her. Grrrrr.

Anyway latest assessment (for statementing) and the new paediatrician actually told me he thought ds1 had verbal dyspraxia (now there's a surprise!). I faxed him asking him to mention that in his report so we can get access to SALT. Haven't heard back yet though. Really the key is getting that in a report, because verbal dyspraxia requires such a high input of SALT- the children do actually have to be taught to speak- they won't just learn it (in the same way I had to teach ds1 to drink from a beaker, and use a spoon- I almost keeled over when ds2 just did it).

So the fight now is for the diagnosis. We have the BIBIC assesment and I am going to take up the American SALT's offer of video advice- she is the US expert on verbal dyspraxia and also has a lot of experience with ASD.

MABS OT is ridiculous. I don't even feel like I can fight for it tbh as one of my friends little girl needs it so desperately (far more so than my ds1) that I would feel guilty if I got it. She has been waiting three years- and her 6 year old daughters mobility is so bad the NHS are providing her with a wheelchair! But no OT.

Thomcat- After OT, SALT is a nightmare to access! tbh I have the autism quite easy. DS1 is affectionate, obedient (far more so than ds2), loving, funny- has a great sense of humour, and likes being out and about. He isn't rigid or phased by change- so I do have it easy. He just has terrible speech and language problems.

I think more than anything its the lack of SALT that winds me up. I can understand that he might come bottom of other lists as others may need to access the services more than him, but when it comes to SALT- he needs SALT more than any other child I have ever come across.

Oh well rant over- I'm off to read the American website and find out about the video service. If I can't get the helpp here, I'll cross the Atlantic!

30? 3 I mean obviously!

I noticed in our local paper tonight there is an autism conference in Nottingham next week, if anyone is interested. Only a half day. Free to parents; a fiver to health professionals.

Jimjams, I've just realized that SALTs probably stands for some sort of speech therapy. Is that correct? (I'm being calm here and feel chilled to the bone...)

Um, so I'm going to apologize if this is way off: my sil's son is autistic also and does behavioural therapy (the new, all positive reinforcement kind). It's worked very very well for him. My sister's husband used to be a therapist and when my nephew (sil's son) was diagnosed, she chose to go that route. I don't know if you've heard of it, but will get some info for you if you'd like. The kids that do it have usually had the trinity of occupational, physical and speech therapy, because it's funded by the state (no insurance necessary) and easily available. I thought SALTs was something like the behavioural therapy thing, which in the US is considered "experimental" and is only funded by a few states. That's why I haven't mentioned it before and I'm hoping I'm wrong now. I thought you were talking about something above and beyond those things.

Anyway, sorry if that was out of line. I'm really horrified if your son is being denied speech therapy. If you'd like, I can ask my sister (in the US, in CT) about that too. She's really good at those things.

JJ - I saw an ad in the paper tonight for a Speech And Language Therapist and it clicked what a SALT is! I keep meaning to ask jimjams but never get around to it!

JJ- I'm afraid SALT stands for speech and language therapy. That's all I'm asking for! Actually autistic kids in the UK don't really get SALT. I have heard a number of professionals say "autistic children don't benefit from SALT" which is bloody ridiculous as it's a communication and language disorder! I think what they mean is that they don't benefit from SALT NHS style (ie once every three months in a strange room). This is the problme we have- becuase the diagnosis is autism, we're not getting SALT, but his verbal dyspraxia desperately needs it.

Does your nephew do Lovaas (also called ABA)? It is very popular in the States. There are quite a few variations on the theme now. I did look into it but decided against it for various reasons. One being cost- it costs thousands to run a programme. A few children are funded by their LEA's but you can imagine the battles. Also I just felt it wasn't quite right for ds1. He loves going out and being around children - so he loves nursery. The programme organisers would have wanted us to stop nursery. TBH in his case dealing with the autism isn't really the priority- I think it's mild (as does his nursery),he does have very severe language problems ( some of which the programme would cover)- particularly speech (which it wouldn't). His dyspraxia makes his autism appear worse- and really needs to be dealt with.

I'm always interested in learning more though, so love to hear more about the techniques. I try to do a bit of SALT with ds1 every day, a bit of fine motor stuff (puzzles etc), but other things as well. I'd definitely be interested to hear more. And yes please do ask your sister. I'm finding it easier to access help from the States anyway!

Jimjams, yep, I know it as ABA. My nephew has trouble with other kids, so it's really good for him. I can see how you'd want to maximize the contact with other children-- "normal" (yeah, whatever that is) interaction is the goal. It does cost huge amounts, too! Wisconsin covers it (a state adjacent to Illinois) and I know my sil is frustrated that Illinois doesn't.

I'll definitely tell my sister about you need the ST and OT for your son. She's quite handy with stuff like that. I'm really appalled. My sister thinks her 6 mo old daughter might have a problem with her left hand and called the birth to 3 services to check it out (her paed wanted to watch and wait). The OT came out, evaluated, decided there might be a problem, forwarded her evaluation to the paed (who Julie assures me is good, just a bit conservative) and the department has to come out within the next two weeks to follow up and decide how they can help. And then, of course, help.

Actually, my sister doesn't believe stuff like this happens, much less regularly. She's someone who has no money (her husband is in grad school), depends on state services and knows how much the US system fails. She's going to be horrified.

JJ- I didn't even realise that some states funded ABA programs - that is incredible!! No - over here everyone talks about the importance of early intervention but no-one actually provides any. The main problem of course being that autistic children really do require one to one and that's expensive. So they just ignore us and hope we go away. There are a couple of lines in the Nick Hornby artivle below that I love- one being the bit about "stonewall til they sue" - it's so true.

In some ways we're quite lucky as ds1 has been getting one to one help at nursery for 4 mornings a week since xmas. They did threaten to withdraw it from April as the nursery has taken on extra childen with commuication disorders and according to the LEA can share help (except they can't!). I kicked up a huge stink and they backed down- funding is now in place until September. It did make me wise to the system though so we have opted for mainstream school in September as he will then get one to one help. If he had gone to the one autism base in the city he would have got one to 4 or 5 help (and would therefore have spent a lot of time watching videos- I've spoken to the parents!). We are fortunate though as ds1 likes children, copes fairly well with busy places and is very obedient, so mainstream has a chance of working for him (and yes the normal peer group is an advantage). We are doubly fortunate in that we have a safety net- If it doesn't work out I can home ed him.

The "NHS is the best in the world" really annoys me- it isn't. It is falling apart at the seems. It does a few things- antenatal for example well, but the rest is hopeless. I've spent quite a bit of time on US sites and there parents are arguing for SALT 5 times a week rather than 3. Here we're arguing for it at all! I'm sure this view will be controversial on here, but it isn' t amongst anyone I've met who has tried to access services for a complex problem.

Maryz- I LOVE hearing stories like yours! I'm hoping for that miracle myself. Unfortunately ds1 kind of uses the wrong vowel sounds as well! Intonation is good though. Actually its pitch perfect!

Someone I used to work with fundraises so that her grandaughter can have Lovaas therapy. They are quite lucky in that a couple of students have offered to learn and help out for free. It has made an incredible difference to the little girls' life. I know her parents are facing battles over schools etc too. They live in one of the most deprived areas of the midlands.

I have such symapthies for what you are facing