Name any person that has let you down

[lil_me]

This is the other topic which went on for a bit in a chat room, consider it a rant post

 

(The letting down I mean letting down with your ASD/AS/ADHD child or let you down if you are the one with the problems/disorders)

 

The main person who has let me down when it comes to the care of my son is the first consultant who we went to see when he was 14 months old

 

By this age he was only just sitting unaided, could not walk/crawl, dazed into space mostly, didn't talk ,used very few facial expressions, was only interested in playing alone, was reliant on routine, ignored things like television etc, hated any loud noises, strong smells, being touched lightly etc , slept max of 4 hours in every 24 to name but a few

 

The consultant gave us Valergan to try to knock him out to sleep then discharged him (the valergan never worked)

 

My view is if something was done then I wouldn't be having the struggle I am now

 

 

I will list the rest later

Edited July 16, 2005 by lil_me

[KarenT]

We had a first 'assessment' as well. I say that tongue-in-cheek because all the psychiatrist did was listen to us for an hour (missing what I now know to be very obvious indicators of AS), met James for twenty minutes (during which time J was obviously good as gold), then went to school for a couple of hours then concluded that there was nothing wrong with him. It also didn't help that his class teacher in Reception was very inexperienced and didn't see the obvious signs, plus the head was too keen to promote an 'our school can handle any child' stance, so the impression they gave was flawed as they focused on James' qualities rather than his difficulties. Consequently the psych left with a very unbalanced view of James' problems.

 

This time around everything seems to be going fairly smoothly to date, although our psychiatrist this time has been seconded to another hospital and is only available to us in Gateshead one day a week. Nobody at Child and Family Dept seem to know how to get in touch with her... Last time I saw her (after begging for a crisis appointment) she gave me her email address so I can contact her now if I need to. The only other problem is a (so far) six month wait for SALT and no sign of an apointment, but that's just NHS waiting times for you.

 

Karen

x

[call me jaded]

My community paediatrician who looked at me as if I was mad when I mentioned fish oils

[barefoot wend]

Amongst many, many let-downs my most hated is the psychotherapist who said she'd see him through transition to secondary and didn't.

 

Thanks.

 

Barefoot

[phasmid]

Let down...or was it a blessing in disguise. We don't really know, so you decide:

 

Phas Jr was first seen by a paedatric (sp?) specialist at 3. No diagnosis was given to us, BUT, it went on his records! When we returned to the diagnostic process again some years later the earlier diagnosis was let slip. We were 'Gobsmacked' as you can imagine.

 

However, looking at it from a different perspective this might have been a blessing in the long run. We didn't let his 'odd behaviours' take over. We did our best to deal with them as we went. For the most part we got it right.

 

So would he be the person he is today had we been told he was Autistic at 3? Who knows?

[lil_me]

I supoose you are right on that one

 

Another proffesional group as such which let us down were speech therapists, my son was refered before he was 2 and he still hasn't seen one at 6 1/2, but this mean't I did it myself, he now has a wider vocab than a lot of adults and I don't know if the speech therapist would have succeeded with him in the way I have. Also not having a diagnosis has mean't I have pushed him very hard in the areas he has struggled in, I don't know if I'd had a diagnosis of Autism back then I may just have given up on these things. Also as you said I had no 'reason' for the things that affected his behaviour so was just deal with it when they became a problem.

Edited July 17, 2005 by lil_me

[Suze]

Members of my family...(in- laws), who offered no support and have never spoken or asked about his DX. Another was a very close friend who did the same ,their reactions hurt more than anything and now looking back I cannot forgive them.

[oracle]

The Child and Family Unit who diagnosed an Odeipus Complex and missed the ASD altogether. That left us on suicide watch and the removing knives, tablets and anything else that would do the job being hidden for two years. It also menat we waited another two years before we seen someone who knew what they were doing and gave a dx.

 

The GP who would not remove the words 'severe and emotional behavioural problems' from his PC screen which hit us in the face everytime we took David. I asked for them to be changed to dx of Aspergers syndrome. He refused.

 

The GP (same practice but different guy) who called Paul Shattock a quack and ignored the fact that our youngest was lying across my husbands knee with a temp of 102 and vomiting like a whale and had these episodes every couple of weeks. He offerd a gut biopsy and asked what we expected him to do?

 

We changed GP's after that and have never had looked back. The nes GP sent Matthew to see a Consultant who dx Cyclical Vomiting Syndrome.

 

The school that asked David to write a list of everything he liked about their school, following a total nervous breakdown and two years away because of it. And they really felt that that was a good way to get him back into their school?

 

The Ed Psy who decided Matthew did not have autism and would not refer for a Statement and we then had to have a total reassessment and came away with the same dx.

 

The school who went with the Ed Psy and did not support Matthew.

 

Shall I shut up Now before I explode?

 

Carole

Edited July 17, 2005 by carole

[Jericho]

The Health Visitor who, when I told her that my then toddler was unresponsive and didn't seem to recognise his own name, said "Well he's passed a hearing test so he must be okay."

 

The Paed who refuses to give us a written dx for our youngest (despite telling an entire roomful of professionals that our son is autistic) and has an obsession with where/when our son sleeps. Just write down the bl**dy diagnosis!

[Colin_and_Shelagh]

The teacher who knew we were trying to get a diagnosis, but who still wrote on Patrick's end of year report about his 'sullen attitude'.

[~Jonathan~]

A GP at the local surgery (retired now) who told me I was 'bizarre' and 'obviously disturbed' when I asked him whether there was a possibility I had AS. He told me I was 'an attention seeker' and 'needed to grow up.'

 

I cannot describe how much I hate him. He failed me terribly

[Canopus]

A GP at the local surgery (retired now) who told me I was 'bizarre' and 'obviously disturbed' when I asked him whether there was a possibility I had AS.  He told me I was 'an attention seeker' and 'needed to grow up.' 

 

GPs can often be very laid back people who hold a narrow and blinkered outlook on life. Sometimes they become GPs because it is a recession proof job for life and they can never become unemployed unless they are struck off the register for malpractice.

 

I cannot describe how much I hate him.  He failed me terribly 

 

I know the feeling.

[karin]

hi all all the specialists i have seen (4) who still cannot see what me an hubby see and to the school who said my kids were perfect how come you can start the school year with 16 spellings a week and end up having to learn 8 spellings as 16 is too hard,how come you have to play with girls as you cant read social ques in boys that they bully you something rotten but there is nothing wrong with them is there? my rant keep smilin luv karin xx

[Tylers-mum]

My mother.

And if my concerns are verified, then my Community Pead too.

[BusyLizzie100]

My son's nursery school teacher. Despite encouraging us to get the Specialist Advisory Teachers involved (this was pre-diagnosis), once my son was diagnosed with ASD and the Autism Advisory Teachers provided them with information and advice, they did nothing - no visual timetabling, no understanding, nothing. They just banged on about how good they were at dealing with SEN. Well, they did nothing for my son and nursery school was a wasted year - and early intervention is supposed to be so important.

 

He started mainstream school in Sept, eventually with a Statement, and the staff have been fantastic.

[Kathryn]

A very long list: to name a few:

 

- the ed psych who had she diagnosed my daughter accurately five years ago, could have save us a lot of pain

 

- the former senco who said we had self diagnosed our daughter and blamed her for "not trying to fit in".

 

- the psychotherapist who kept saying "I know nothing about autism". and couldn't even be bothered to find out.

 

- the consultant psychiatrist who couldn't even admit that he knew nothing about autism

 

Happily, these people are outnumbered by all the support we have received from other professionals: the current Senco of my daughter's school, LEA ed psych, connexions worker, GP, current psychiatrist, social worker.

 

K

[simplydeb]

My sons nursery who saw fit to not inform us of obsessive and repetitive behaviour, not mixing, refusing to join in, hiding himself away etc etc needless to say he no onger attends this nursery and we are on the find for a more sympathtic environment. Debie

[mandyque]

I have little complaint about the professionals who deal with my daughter, they are on the whole doing the best they possibly can under a tough budget.

 

The person who let us down the most is her father. He wasn't even there for her diagnosis appointment and has never been to a single meeting, consultation, school review, anything whatsoever. Then he left and only bothers with her when it is convenient, he has no consideration for her need for a routine in her life. I have told him on several occasions about appointments but he never turned up. There was even one appointment on a day when he had agreed to have her overnight, but he wouldn't ask for one hour off work to take her, I have to do it all.

[LKU]

The clinical psychologist at camhs.She said everyone is probably a little bit autistic(very helpful, not).Same person later on "what do you want me to do?"Doh!!!

[asereht]

My sons psychologist he is hopeless.

[seeking-sanity]

My sons school or mailnly one very ignorant teacher, who still now knows better than the peadiactric consultant and doesn't believe his dx!!!

[admum]

The Senco who told us there was nothing wrong, lied about provision and then blamed us for her breakdown when she was found out. Her head who banned us from speaking to any staff because we had complained about the senco and failure to put in place the iep. The teachers who stood by and watched son be thrown agaanst a wall and held by the neck by a parent because my son had said something he shouldnt have to her daughter. The teacher who asked the whole class what was wrong with my son ie why they didnt like him- and they wondered why he hated school. The head who accused us of being over protective and having nothing better to do than take son to oT every week. Who lied about sons needs. The lea ed pschy who inferred that we didnt want our son to succeed. Ihate that school so much. They badly let down my son. Thankfully we have always been well supported by his treating doctors salt ot gp etc.

[TuX]

A GP at the local surgery (retired now) who told me I was 'bizarre' and 'obviously disturbed' when I asked him whether there was a possibility I had AS.  He told me I was 'an attention seeker' and 'needed to grow up.' 

 

GPs can often be very laid back people who hold a narrow and blinkered outlook on life. Sometimes they become GPs because it is a recession proof job for life and they can never become unemployed unless they are struck off the register for malpractice.

 

I cannot describe how much I hate him.  He failed me terribly 

 

I know the feeling.

I doubt people would make a judgement based on the longetivity of the job at joining the profession as the person would have to be very dedicated to the subject-there is years of studying and training required.

[Canopus]

Becoming a GP can be seen as a pot of gold at the end of a rainbow. Believe me, hospital doctors are very busy stressed out people yet most GPs have quite an easy ride. My parents work in the NHS and they think that many GPs are quite laid back people who are in the job primarily for the security and the money.

[CarerQuie]

I think that some GP's like the personal touch and the chance to have ongoing involvement in familes;hospital Doctors are usually only involved in acute circumstances.My GP is wondeful.She admits that her knowledge of ASD is not great but always asks about my son and his progress even when I'm consulting her for other reasons.xx

[jomarie]

At the moment I feel very let down by Ed Psych, we've had our initial appt with the paed, had an appt with SALT (who've also been into school to assess him in his school enviroment) but still haven't heard a single thing from Ed Psych, I feel like myself, ds & the school have been left in limbo waiting to hear from them.

 

Also feel really let down by my sons senco, when he was in year 2 (last year) his class teacher first brought up her thoughts that ds had as, when we had a meeting with the senco she thought he probably was as but that he didn't need to be assessed/diagnosed as 'he wasn't as bad as others'. After feeling traumatised for sometime & breaking down to my gp & hv they arranged for ds to be assessed (after the gp getting furious that a senco would stick a label on a child without an official diagnosis).

[Flora]

I feel let down by my ex husband's family, particularly my father-in-law who is a GP. The best he could offer in terms of support when I told him about my son's (his Grandson!!) diagnosis of Aspergers was to say 'oh he'll grow out of it'. This from a GP!!!

 

Several years on and I've sent them all information on AS and explained in detail how it affects my son and all I get is 'there's nothing wrong with him, he's perfectly normal', or worse.... 'he's got you wrapped round his little finger hasn't he?'.

 

I could scream with frustration at times, but thankfully I've stopped trying to seek their support (though I was never actually seeking it for myself, I was seeking it for my son).

 

The latest beauty is that his dad has refused to pay school fees and they've all advised me to 'just stick him in the local comp... it'll solve a lot of problems'... and this is from a family of people who have never ever used the state system to educate anyone!!

 

Thankfully, for myself and my son, I'm a bit less short sighted and I'll continue to fight the good fight and be my son's advocate regardless of the small minded attitude of people who claim they care.

 

I could actually go on for ever with stories of being 'let down' but I won't bore everyone!!! or depress them!

 

Lauren

[hopeful]

I spent almost three thoroughly vile years at xxxx Nursing Home in Inverness, which is the worst place I have ever been in in my entire life. I would like to see it closed down and its staff, particularly the owners and managers, jailed and never employed anywhere ever again. I could write pages. I have not one good thing to say about it.

Edited August 2, 2005 by hopeful

[nellie]

I would just like to remind members that the forum has a policy of not naming schools, organisations, professionals. This is for legal reasons.

 

 

 

Nellie

[Kris]

Hi all,

 

To add to what nellie has already said,

 

We disallow the naming of schools/organisations and the like particularly where this is likely to lead to 'my school is better or worse than your school' attitudes.

 

This is due to the possibility of defamation (I think thats the right word) and action being taken against us by the organisation in question if they feel they are being bad mouthed in public.

 

Just a gentle reminder to those new members who may not know the policy.

 

Thanks all,

 

Kris

[Canopus]

I know there are laws against libel, but are there any official laws against defamation? The way I look at it is that clamping down on defamation is a form of political correctness aimed at stifling criticism and effectively letting the guilty get away scot free. Libel is when something untrue has been written, but defamation is when something true yet very critical and damning has been written.

 

I support free speech and freedom to criticise even if it causes offence. If whatever is written is true then the person or organisation should suffer the consequences of bad press.

[oracle]

If whatever is written is true then the person or organisation should suffer the consequences of bad press.

 

Yes but it would depend on what version and whose version of the truth you were posting? We all percieve things differently. My version on an event may be totally different from yours whose would be the 'truthful' account?

 

This is an excellent forum and it would be a shame to lose it to flamming.

 

Carole

[LKS]

My son's headteacher who last year when my son was being bullied had the brilliant idea of taking son out of class and off to his study to discuss son's feelings and emotions This same head who refused to let teachers or L.S.As put any daily comments in his home link book as the comments would all be negative, Same person who told me I was a very negative person and should allow the school to get on an educate my son, same person who said if son can't manage in primary school he doesn't stand a hope in hell at secondary, same person who said just because his statement says that he will receive 15 hours of L.S.A. support per week doesn't mean the school have to provide 15 hours and the list goes on and on

[hopeful]

That vile place did not own my meals. Yet for the first two years I spent there, I was not allowed to eat them in my own room. Things only changed when I began taking my meals into my bedroom regardless of many threats, including one from the manager herself to actually stop my meals altogether in reaction. I finally forced these vile bullies to relent, and for the final year I spent in that accursed dump, I had all my meals in my room. Had they not made such an issue out of it in the first place I would not have cared where I ate my meals.

Most residential / nursing / old folks homes bully their clients into eating their meals in dining areas. I would urge every victim of this domineering blackmail to resort to direct action as I did, and take their meals to wherever they would want to eat them. The moment staff attempt physical obstruction or to steal any meal of their victim, the victim should contact police and insist the wrongdoers be prosecuted. They should also contact the mental welfare commission and their MP. The local social workers might or might not be any use in the matter. Mine were actually siding with the dump they had put me in, which in the first place had been against my will.

This was by no means the only issue I had with that freakshow, by which I do not mean the residents, but the largely stupid, ignorant, arrogant, wicked staff. They belonged to the scum of the earth. (I am one of those old fashioned types who are not being complimentary but condemnatory when they call something 'wicked.')

Edited August 2, 2005 by hopeful

[smallworld]

Not entirely related to this thread, but I'll stick it in here anyway,

I notice from newsletter I get that there's a headteacher's job going at a certain *** school.

Don't know if it's the same school as in the recent doc. but makes me wonder ?

[CarerQuie]

Yes,I too,thought it might be that school.xx

[smallworld]

I think it probably is the same school. I have mixed feelings about this, and think she probably has carried the can for the whole school for her opinion of teaching the children that their asd is to 'blame' for their behaviour.

I can understand that she probably found her position untenable after this. I can't understand how anyone would agree to putting their school under such scrutiny. You're holding yourself up to the whole editing process and the inevitable backlash.

That said, she looked mighty stressed/depressed to me.