Attitudes towards professionals

[Lougle]

I'm an 'old' face on this board. I used to be quite prolific in posting, then I took a step back...now I lurk.

I have always read the board, contributed and encouraged parents to be proactive and assertive with professionals.

Now, however, I have been increasingly disturbed by the wave of militancy I have seen here. It has disturbed me so much, that on the many occasions I have started to post, I have realised I have nothing to say that will be received.

What has happened to us? As a community, we used to be a body of people who would give new parents, desparate for advice and direction, clear, objective advice. Advice that encouraged them to ask questions, push forward their path to answers.

Now, I see new parents being given what I view to be propoganda. No longer advice alone, but a politicicised viewpoint of Us vs. Them. The Them being health and education professionals.

Thread after thread with the sentiment that cost is the only motivator for professionals. That all our children are being sold short. That nobody cares for their child. That TEACCH is rubbish. That only ABA will do. That you need to FIGHT and you need to attack.

It isn't so.

I am shocked and saddened. I am displaced. I am no longer sure of where I belong.

We spend our time moaning that professionals don't want to work with us. If attitudes are as they are expressed on this board right now, what is there to work with???

I do agree that participating on this board makes me feel I need to go in and fight school - when in reality I am fairly happy with what they're doing.

So I think you're right Lougle. While a lot of bad things do happen - there are also good things / people.

Thanks for the reminder.....

Hi Lougle - I don't think I've read any of the threads you mentioned but I thought I'd respond to this one because I am in the depths of despair with the professionals dealing with DS's care both educationally and healthcare. I feel totally disheartened and disillusioned - they don't return calls, they don't do things they say they will, notes are lost, therapy has been cut, reviews postponed, funds not available for essential equipment, and the education system seems to be a minefield of being 'in the know' on how to work it and get places at schools supposedly full!

I'm tired of the constant chasing and following up already and DS is only 2.4 - we're paying for genetic testing available on the NHS in other parts of the country, currently looking for a private OT and probably to purchase a walking frame ourselves.

We are always polite, friendly and professional with our Professionals - we accept that funds are tight and they are busy but sometimes it really does feel like they just don't care :(

Lougle,

if it helps any, I too am no longer sure where I belong. (why would that help? silly statement, but true nonetheless)

I don't see so many posts saying professionals don't care. Most of the useless professionals that have been involved with dd1 over the years have cared - but care alone doesn't do much.

I also have not seen the "only" ABA will do argument (this has been brought up more than once now). this board is a strong advocate of ABA, sure. there are not many places on the internet where this is true.

What I have seen agaian and again is that ABA is the best chance a severely disabled child (if you ask me, any child, tbh, and I speak as someone with children at total ends of the spectrum ability wise) has of learning.

and the science and studies back this up, I'm afraid. along with considerable professional opinion (talkng at the research level here, not the Head of school level - nothing wrong with Head of School, just clarifying).

TEACCH is all very well. But I have yet ot find a professional who, when quizzed on it (and who answers genuinely with no bluster) who has not said much the same as our EP says (who, for the record, pretty much hates ABA - yet we use his services again and again) - that a child who improves under TEACCH is a child who would probably improve anyway.

What I (and several other posters) have found is that if your child is not one of those children who woudl improve anyway, the system does not alter. At all. you, and your child are the odd ones - it works for everyone else - must be that oyur child cannot learn this particular thing, or is "not ready to learn" it.

I have a lot of time for a lto of different therapies. I ahev doen some weird and wacky ones with dd1.

but I do not have time for anyone (or any system) who looks to blame the child if learning does not happen.

both my girls require special education. neither benefit from standard TEACCH approaches, for various (and different) reasons. I have a wide experience of SN schools, in 3 different counties (and dd1 is only 6!) - along with coordinating teams of professionals form those counties. Not once have I come across someone in an nhs role who, when push came to shove, woudl actually back us up in saying that dd1 wa snot progressing under the system.

they would all agree she had "more in her", or that she was "doing well at home", and most would marvel at what she was achieving. but not one would actually say htis in public, or to another professional.

that is why it became (in our case) Them and Us.

as I mentione dearlier - our EP hates ABA, with a passion. but he is good enough at his job to set that aside, and observe dd1. and make recommendations on what she needs.

again, I never came across this in a state SN school, or a TEACCH school, or form any nhs professional. and I am not the only one - there are many of us here with very similar stories.

I am sorry you feel the way you do.

But I also think you are much luckier than you realise in your team of professionals and school, if they will do even a fraction of what any professional ever involved with dd1 has neglected to do.

oh, meant to say - I have been here for nearly 6 years now, in various names.

and it was ever thus.

my first posts asking for help said the same things to me as are being said now - fight for your child. read into what is said to you. look behind the gloss. question, and question again.

because sadly, the sate of SN education has been appalling (in general, aside form the occasional good place) for a long time - and if you find a good place, it can be fight to get into it, for that reason

It's great you have good experiences, I understand what you are saying, balance is great but I think there is sometimes also a need for action. But we are all probably experiencing different things, some positive experiences some not so positive maybe? I suppose that the problem is that when things are going wrong there tends to be a knock on effect and I think the time it takes to resolve things can cause difficulties in itself.

Thanks for sharing your positive experiences it's really good to hear them and good to know that some people are feeling supported, it's important to know this. I try to explain how things are for me to professionals whenever I can. I will continue to try to work with all I come into contact with, but if I can't, I try to use the appropriate mechanisms to address the difficulties.

My son has a fantastic TA though.

I am not saying I have had the best experiences. I too have had to navigate the system and 'steer' it to get the input DD1 needed.

I accept that I am lucky...DD1 is in a fantastic Special School with staff who live and breathe their work. We finally have made the holy grail of Social Services accepting that DD1 needs the services of the Children's Disability team.

It isn't the experiences that I am challenging. How could I know what you have faced? It isn't the view point that we, as parents, are our child's best and only advocate. Of course we are - we have only their interests to serve, whilst the professionals have many children with competing needs to balance.

It is the shift, I feel, from a proactive stance, to a politically militant one. Instead of the focus being as it once seemed to me, of making sure that your child was in the minds of the professionals, making sure that your child got what they needed when they needed it, the focus seems now to be about the mode of education.

An example:

When I was first going through the statementing process, I truly thought that what would make DD1's education more effective was good 1:1 support. I was encouraged to seek as much 1:1 as possible. Now, in a mainstream school, there is no doubt that she would need constant supervision, I don't deny it. However, what I have come to realise, as my daughter takes the register back to the office independently, is that she doesn't NEED 1:1 all the time. She needs the right environment and targetted support. She doesn't have 1:1. She has 4:7. But she thrives from the independence.

But wait....they use TEACCH. Are you saying that she is progressing because she would have done anyway? I beg to differ. She went through the whole of pre-school with no improvement. She is progressing because she has dedicated staff who KNOW her, and watch, observe, record, and plan. They get results, but they don't use 'ABA'.

What I am saying, is that I feel, and it is only my feeling, that this board has lost sight of the children, and is focusing on the wrong fight. These professionals, were not forced to work with children with additional needs. They are trying to meet those needs. They won't be perfect, but they need our co-operation.

How is it helping to set frightened, stunned parents up for a fight against the very people who hold resources? I like to think that perhaps some of my 'luck' has come from collaboration with staff & professionals.

My experience (and obviously that is all it is) is that MN SN section is unique in offering parents the perspective it does - I have found other sites aimed at parents of autistic children to be not as informative or as useful in actually getting me from A to B with what to do and are a bit more precious and up in the clouds about autism. I don't think 1-1 is the answer to everything in the long term but in the short term appropriately targetted 1-1 is the key for some children to even get to the stage of being able to cope with less support in the longer term. I think what MN SN is really about is ignoring people who tell you what you should think about your child's education and doing some homework yourself and doing enough reality checks -if that lead to TEACCH then that is great but equally it does not then that's great too.

Oh - no idea why all that was in bold - was not trying to emphasise that !

sorry, Lougle, i should have been clearer: I meant able to progress academically. situational changes as appropriate for SN were a given in my post (although that was not clear)

not my opinion, btw, but the opinion, as I said, of jsut about every non-nhs professional I have ever come across. even my ABA-hating EP is no fan of TEACCH.

and I did try collaboration too - and all it did was get me (and more importantly, dd1) shafted.

I wouldn't (and haven't, to my knowledge) advocate going in confrontationally, and all guns blazing - that is rarely going to win any friends.

but I stand by what I said in my second post - the advice here has always been the same: know your rights, don't take no for an answer, don't get guilt tripped out of arguing for provision for your child, etc etc.

Well, I'm still balanced on the fence Lougle, professional and parent.
I miss you posting.

"I think what MN SN is really about is ignoring people who tell you what you *should think about your child's education and doing some homework yourself and doing enough reality checks"

It is EXACTLY that which bothers me.

We shouldn't be encouraging parents to ignore what they are told. We should be equipping parents to assess what they are told, and investigate the options they have. The tone of threads here is very much that 'the professionals are fobbing you off, you go and kick up a fuss - then your child will get what they need'.

I am with sport on this one we have constant battles with funding being cut,proffesionals not returning calls,constant chasing just to get the basics.In the past we have been to reviews where recommendations have been made,then the following year none of those recommendations have been met.That no longer happens as we do not allow it.We chase people all the time to make sure things happen.

You make some really good points lougle. I too have a brill team around my ds, ( I am lucky too) but it has also been hard work to assemble that team, and kinda keep them on track... (sometimes I feel I do more professional work than some of the professionals.) . But I feel like they are colleagues, and luckily they seem to feel the same about me. We do have a good partnership. (There have been some crap ones previously I must say tho.)

I struggle sometimes with what can feel like an 'all professionals are crap' under current which sometimes rises. (I am a social worker by profession.) I don't mean to minimise the effects of rubbish workers, I know that can be devastating, but as you say expecting people to be crap doesn't help with building good relationships.

When I first started actively fighting for my ds I was stroppy and adverserial (sp?) and a wise person on here said 'its chess not all in wrestling' and that has become my mantra.

thank you, whoever you were!

PS I started the post above and then had to go and sort out ds, so the discussion has moved on a bit, sorry!

I probably did phrase that in the wrong way - none of us can give all the back story of our individual case but I have collaborated fully for two/three years with a TEACCH/PECS environment and am only now at the retaliatory ignoring stage because I am tired of watching my child being let down by staff using approaches that are clearly going nowhere fast. I have tried as much as humanly possible to make their ideas work but there comes a point where I have to accept that there is no more life in a dead horse. If TEACCH works for other children with a different profile then I have no problem with that and I would never try to make someone feel they had made the wrong choice for their child.

tbh, Lougle - did you not get fobbed off?

were you not told your dd would be ok in MS? (I might be misremebering, and apologies if so)

I know I certainly was. and that was not about which educational system was used, but just about finding a place for dd1 to fit in.

and I was told time and again she woudl be fine (this was in my pally collaboration stage), that she woudl adjust. that she would "get there". right up until the moment when they announced she shoudl be in the SLD school.

now that is a (grim) joke. dd1 is not SLD. but I was fobbed off with placatory nonsense, form several different authorities - right up until we won our fight, I had the LA tellign me dd1 needed to be in an SLD school, due to her extremem almost catatonic nature.

yep, collaboration did wonders for dd1. it really did.

no, O don't think that parents shoudl be told ot listen to the LA above all else. Parents are the ones who know their child best.

I agree with willow - we shoudl be supporting parents to find out as much as possible about every opportunity available to them, and work out what is right for them and their families. they are the ones who know best.

Fwiw, I think this board has been having to find its feet again lately.

A number of really experienced posters went very quiet a while ago and left an imbalance of new posters [I include myself in this].

I think there are still a lot of people on here who are just starting on their SN journey, some of whom have really strong views.

I know I miss some of the more experienced posters and I agree that the board is sometimes not as calmly supportive as it was when I first joined. But that doesn't stop me coming here, I just choose carefully where I post.

Come back more often Lougle and give us all the benefit of your experience.

I do agree Lougle that ignoring professional advice as the default option/starting point is clearly silly and that was not what I meant only that parenting an SN child is a journey on a unknown path and that there is no necessity to follow others' advice solely on the basis that they are professionals who have chosen SN as a career path. If we had all listened to professionals 30-40 years ago, our children would be in sub normality hospitals or the like. Times have changed but only by us changing them.

ironically lougle, having been appallingly fobbed off with DS in the pre-school years - it was posters on this board, Moondog especially, who talked me round from being so suspicious of the NHS professionals, so it can work both ways. I do see your point re:ABA, I think ABA has become more favoured on here than it used to be. btw I feel I barely belong on here at all, as DS' only diagnosis was a bit of a feeble one IMO - language delay/social subtle communication difficulties (strongly suspect some form of ASD or SPD dx will come in the junior school years.)

Generally - lougle/zzzzz I think it's actually very useful for people to hear the positive experiences, as they can also act as a role model for what is a realistic "ask" as it were, of school etc.

I htink a higher number of threads are now abut ABA.

but that is in part due to the absence of other posters, and other disabilities.

there used to be a fiar few posters with children with CP, for eg, who no longer post (or not as much) - not just Riven and 2shoes, but HairyMaClary, HangingGardens, oh, and others I cant remember now, sorry

but back when I started to post, ABA was always mentioned too - by jimjams, Davros, homsa, sphil and others.

so I think it is the mix that has changed, not the amount ABA is mentioned.

As a parent who has 'been around,' if not on MN, and seen SN education from within SS and MS schools as a TA, I only tell it as I find it, which has been fantastic SALTs, OTs, Autism Advisory Teachers and SS staff and on the other hand, inexperienced MS staff and SENCos, some great teachers, some poor ones, some great EPs and some poor ones. Very bureaucratic LA, with clerical staff who have no idea what they are typing up. Great paediatrician, supportive GP.

MS schools are trying to get support from the EPs and Advisory Teachers, but are being told there are huge waiting lists and quite severe SN aren't extreme enough. If parents are in denial the schools can't get anywhere even if it wants to. The parents have to be the ones to demand support in borderline cases. Even the special schools are all infighting to be the one that is kept open. Some professionals, most, are really caring but they simply don't have the resources or time to do their jobs properly. All we are advising parents is that they have to be the PITAs who shout loudest or their DC won't get what they need. The problem is that other DC may suffer as a consequence, but we can't help that. It's not our fault.

My DS was one of those who used the 'traditional' methods of ASD teaching, PECs, visual timetables, social stories, a workstation, Hanen approach. He absolutely thrived on it, from non-verbal at 3.6 in a SS to succeeding in MS from 6 to presently at 11. I'm sure ABA is great, it sounds very sensible, especially for more severe ASD, but I don't feel my DS missed out. Please don't think everyone on here is evangelical about it. I have mentioned it, myself, to posters who sounded like they really needed something better than they had found to date.

If you and others don't do more than lurk, how will alternative views be heard?

I've sometimes thought MN needs an ASD section but then that leads on to splitting into high/low mainstream/sn school and you lose the overall perspective. An ABA section could be a possibility too but again it might to being a self enclosed community that does not take on new ideas.

I tend to post positive stuff as well, because my son is 16 and sometimes when he was a few years younger, I despaired at times and wondered how or if he'd ever function in the wider world.
But we've almost made it to the end of formal schooling in MS and I thought it might help others who are travelling a similar path but are still in the foothills.
I've never been accused of being smug or unrealistic on this board, although now, of course I'm wondering if they thought it but didn't say anything.

Hiya Lougle

I'm glad you've been around despite not having 'seen' you lately. Your voice of reason makes me think. I find it difficult to steer a course between just putting up with public service problems, and feeling angry and upset about them. Neither of which helps much.

I think it is really helpful to hear from someone who has managed to get the best out of health and education services by being very proactive while managing not to put people's backs up.