whoa! professionals are people too!

[mogwai]

I've recently subscribed to this website and so far I think it's great. But...bear with me, this post will probably be unpopular - I really need to let off some steam about some of the things I've read here!

I'm dismayed to read how often professionals and their opinions are "dissed" on these boards. I have no doubt that some of you might have had negative experiences, I mean, we are only human and we all have bad days, and yes, some professionals are patronising. But the vast majority of us are trying to do a good job with limited resources.

As an SLT I feel that the parents know their child better than I do. The parent's opinion is invaluable to me in my assessment and I am always ready to accept that what a parent is saying is true, even when it might contradict what I have observed myself. In general, I think all my colleagues feel the same way.

But, being an SLT can be very challenging when trying to work with some parents. I find one of my greatest problems is that communication skills are so difficult to explain in a way that makes sense to everyone. People generally think they know about speech and language, but the reality is often much more complicated than they realise (just as a physio's job is more complicated than I realise). It took me four years to train and many more years to gain my experience, and my decisions and opinions are based on that knowledge and experience.

Some parents, consumed with worry and anxiety (understandably) come to professionals with an attitude of "I want you to fix this and I want you to fix it now". I have read many responses to threads on these boards advising other members to demand immediate therapy (usually from the same people who advocate trying to push your child up the waiting list through lying and complaining without thought for the people who have been waiting longer and deserve to be seen first). My knowledge and experience tells me that "immediate therapy" is not usually the answer. Parents usually expect the therapist to work with their child individually, even when this isn't the best way for us to help. Good therapeutic intervention is based on the right sort of help at the right time, and I get very tired of hearing parents demand "immediate individual therapy" when, honestly, they are not qualified to make the decision that this is what their child needs. I cannot understand why parents take their children to see an SLT if they are not prepared to accept the SLT's clinical opinion of what sort of help their child needs. When parents disagree with your diagnosis, they may have reason to do so, but I don't understand how a parent can disagree with the SLT's opinion of the best sort of treatment to offer, particularly when they don't know what the range of treatments are or the rationale behind them might be.

Finally, I hear a lot of complaints about therapists from any profession who leave their post or go on maternity leave. I am about to take six months maternity leave and the trust I work for cannot find a suitably qualified therapist to cover for me. This really isn't my problem, but it does mean that the weeks leading up to the birth of my child will be extra stressful as anxious parents are already expecting me to be working at double capacity to ensure their child gets as much out of me before I go on leave. I feel like a sponge being wrung dry of every drop of energy. Can you believe I received a direct "complaint" from one parent, via her paediatrician, because my going on maternity leave is "inconvenient" for her and "detrimental" to her son's therapy.

I entered this profession because I wanted to help children with special needs. I do this to the best of my ability, lord knows, I don't do it for the pay. Professionals have every right to change jobs (believe it or not I know many professionals who have changed jobs to get away from particular parents who were making their lives hell) and we have every right to take maternity leave, as like the parents we work with, we also want the chance to be parents ourselves.

I would like to think that the people we work with could see us in this light rather than viewing us as individuals placed on this earth with the sole purpose of helping their child, never allowed to change jobs or have our own children. To be honest, these opinions make me wonder why I will be putting my own baby into a day nursery so that I can go and help other people's children come next January. Perhaps I should stay home for good!!

Ok rant over. I feel better now. My honest advice to all those of you working with SLTs or other professionals is that if you are reasonable and nice, you'll get it back in bucketloads. It's not always easy to be reasonable and nice when you feel worried, but please, think for a minute about the people who have been waiting even longer than you and about who that therapist might be when they switch off the lights and go home in the evening. You can foster a much more productive relationship and get the very best care for your child if you are prepared to meet us halfway and with an open mind.

Christie- that's dreadful although your description of the situation had me laughing out loud.

The speech therapy thing was awful, and typical health authority policy. Reminded me of something I've heard a lot over the nlast couple of years whicb is that"autistic children don't benefit from 1:1 speech therapy" when what i think they mean is they don't benefiit NHS style (once every 4 months). Ds1 certainly benefitted from his weekly sessions with the private one.

So how many physios does it take to change a lightbulb?

Dunno....how many????

one and a parent to bully them into it

This thread is still bothering me.

Anyone remember the bit that Jeremy Vine did on autism. Charlotte Moore was talking about therapies she had tried with her sons. The GP woman said something about the professionals being there to help, and Charlotte Moore said that no she'd had to organise any interventions they'd had herself as if you waited for the professionals to help you you;d be waiting for ever.

And I think this is the point that Mogwai is missing. Our children don't have time for poliical campaigns to be mounted, for the powers tghat be to decide that oh dear there aren't enough SALTS and maybe they ought to train some more. Every month that goes by without intervention is another wasted month, and in the meantime you are reading article after article after article about the importance of early intervention and how it can make a difference. As a parent I now see that you have 2 choices. The easiest by far, if you have the money is to pay for therpay yourself. Easier in terms of sleepless nights etc as it then becomes relatively easy to arrange help that is suitable for your child. But if you don't have the money the only option left is to take on the system. For reasons outlined before campiagning to the powers that be is pointless if you want your child to be helped now, before its too late, and so you have to go to the providers.

My son didn't get early intervention. Despite me raising concerns before he reached 2, he is only now receiving regular state help from people who know what they are doing-- and only because he's at a special school. He'll be 6 in May.

DS2 is fine thank goodness but if DS3 shows signs of being autistic I'll remortgage the house and start an ABA programme whilst battling to get a statement to get the LEA to pay for it. I won't rely on the NHS to provide anything as I know they won't. I often wonder what would have happened to ds1 if I'd done that- he hasn't done anywhere near as well as I would have expected at 2, maybe intensive early intervention would have made a difference. who knows; he didn;t get it.

mogwai, as I am a teacher and like you am amazed that so many mums on mumsnet are ready to slam professionals opinions without the facts or giving them a chance. I have just ranted on another thread because I was both disgusted and amazed and people?s prejudiced and biased postings without the full facts. A mum summoned to the school because of a serious incident involving her child, no givenf acts about the incident only what her son has told her wanting advice on what to do. Only about 1 post in twenty even suggested that the mum waits and sees what the teacher says about the incident before going in guns blazing, instead a whole barrage of posts about how outrageous the school had been, how she should stick up for her boy regardless and one even suggesting she go straight tot eh headteacher and governors - all without even getting the facts and finding out exactly what happened FGS. It makes me so very angry.
Time and time again people jump on the defensive bandwagon when it is about their own children. I know professionaly often get things wrong and that parents know their own chidlren best, but I just wish that parents would try to be a little more open to listening first before switching off and getting defensive. 99% (if not higher) of professionals who choose to work with children, whether within social services, NHS or schools do so because they have the chidlren?s best interests at heart. Constantly i find that posters on this site seem to presume that these professionals have some kind of conspiracy or deliberately choose to make life difficult for them.
I had numerous complaints about my maternity leave as I went at Easter. I thought it was timed well as I could get all my exam groups prepared nicely and sent off on study leave, they thought that i should be around for "counselling and revision support" if any of them came across a problem during their study leave...outrageous really.

Thinking about it, I reckon a lot of the problems stem from the huge political issue of understaffing and underfunding. Many of the problems highlighted by people such as jim jams seem to do with slowness to act or failing review systems - this must be partly down to impossible workload rather than purely that the professionals don ?t care or are inactive. I guess the problem is that the overworked SLTs are the ones to get blamed when they fail to support children effectively and yet without more staff and more time, how can they do any different? Maybe they can, I don?t know, just wonder if the problem lies elsewhere and the wrong people are getting blamed time and time again.

Hi Jimjams,

I would agree entirely with your message. One thing I would add that unless there is a real political well for things to change with regards to special educational needs provision in this country, then things are not necessarily going to alter much. It's going to be ultimately down to the parents to fight for their childrens' rights to be heard - because no-one else will.

I was fortunate, I got early intervention re my son's delays and he now has a statement (after some hiccups and LEA bungling). What makes me angry is that both reading on here and other sites I seem to have come off relatively unscathed. Not all parents either can be as persistant and or bloody minded long term and some of them do fall by the wayside. I know of too many people who are being both let down and worn out by a "system" which on a wider level comes across as adversarial and confrontational in nature towards them.

MOgwai, interesting post.Thanks for starting a good discussion. I think it is almost impossible to imagine what it is like to be a SN parent until you are thrown into that position. Imagine you completed your training to be a SLT, and then on the day you passed your exams, someone saying to you "congratulations, you are now a Physio, and here are 20 cases for you to deal with, i'll pop back every 6 months or so for 15 mins to see how you are doing". For you to understand what prompts parents to be so aggressive, you need to sense the frustration, anger and upset that they have had to deal with. No parent would chose to become a client of SLT/physios but we have for a reason unknown, been thrown into this challenge, and we have to do all we can to survive. I am sorry you feel that some of your clients begrudge you your family life/maternity leave. I wish you all the best with your new baby.

i too agree with the statement that you cannot understand our position until you have your own child with special needs. I was a high school teacher for a number of years teaching children with special needs within the mainstream. I also had experience dealing with people and children with down syndrome.

Despite how much I thought I knew... I was totally clueless when my own child was born with down syndrome.

Early intervention is vital - I can see the difference in a friend's daughter with ds and mine - friend's dd has had early intervention from the start and at a year old is walking etc. My dd started 'proper' therapy at 2 and whilst she has made amazing progress of which we are sooo proud - she is behind the eight ball without that early intervention. It makes me angry when I think what she could have achieved had she had this intervention from the start.

the laminator is a bit ott but who knows what has gone on before. I can see how I could get worked up over small things when dealing with dd1 and her therapy and medical needs along with meeting dd2's needs ( 16 weeks old) some days I just want to walk out the door and not come back - I am tired from lack of sleep and dd1 has been playing up as a 21/2yo would do and dd2 has been tired and screaming all day.

Again - you will never really get it ( and I mean this in the best possible way) until you have walked in our shoes - As I can't fully understand what jimjams goes through with her ds or lou goes through with her ds and so on. We can appreciate the frustration of dealing with professionals but day to day - I have no idea what it is like to be the mother of a child with autism, cp, developmental delay, hearing impaired and so on. I just know what it is like to be dd1's mum.

with regards to the political situation - these children don't vote and so a lot of pollies may see them as 'irrelevant' It is up to us as parents but you know what - we're too busy doing pecs, or attending appointments or trying to equip our children to survive, cope and live in this world.

sorry meant to add this....if we ( the mums of chidlren with sn) could not come here and let out our frustrations etc - where could we do it...... a lot of our friends don't totally get it either unless they also are parents of children with sn - know the difference between my 2 sets of friends.

Have read this thread with interest. I am fortunate enough to have a child with no special needs. I know I am fortunate. As a HV I see families with children who have special needs and get very frustrated about how little is out there. Worse still there seems to be no incentive to do anything about this from the powers that be. If you can afford private care it's fine - if you can't it seems you have to fight and struggle all the way - all very wrong. I sometimes feel a real fraud when seeing these families as sometimes - beyond supportive listening there is so little I can do to alleviete the enormous pressure some are under. Not surprised that some become demanding - they've learned that this is the only way anything can be achieved.

IMHO the system seems to be geared up towards those children who perhaps need a bit of a nudge in the right direction and who will make good progress with that amount of input. I'm extremely lucky that so far both of my boys seem to fit into that category. Our lovely SLT was great with ds1 and gave me lots of ideas to use to help him with during the month-long gap between appointments. He responded well to that. I was also lucky to have access to mumsnet and the \sn board and got loads of useful tips and advice here. It's a good thing that ds1 had such a good SLT because there is no way on this earth that we could have afforded private help.

Everyone seems to agree that early intervention is the key but no-one seems to want to put up the funding to pay for it, despite the fact that it may well actually save money in the long-term. My one big regret is that I didn't have the level of knowledge about child development and ASD when ds1 was a baby/toddler. If I'd recognised the signs with ds1 I'm sure that he would be about 6months - 1 year ahead of where he is right now.

Would mizmiz be kind enough to continue to contribute regarding the system. Its VERY interesting to hear from the point of view of an SLT what hte system is like and how gentle persuasion might help in obtaining services.

Very interested in how much you who obtain private slt pay for it. I have been quoted £50-70 per hour. How can he average person pay for this weekly????

I cant. If no salt is available in ones area, is it possible, to get private treatment and bill the NHS for it?

I have relatives in Canada and the U.S. Some of them work with special needs. Particularly in Canada (Vancouver) if you have special needs, whether adult or child, you are in a very dangerous position. Day programs are being cut constantly, group homes are being bought by developers. No money and i mean NO money is being invested in this.

Why? Because, and this sounds cynical, but its true, the government does not view sn kids as having the same potential to contribute to society as NT kids. Many of our sn kids are not going to grow up and keep the financial wheels churning. They instead might be a "drain" on the system all their lives, depending on their "disability".

To give in and fund programs sets dangerous precedents for the government. Sure tony can find 20 billion for a war, but he cant find £500 for a wheelchair.

Without parents who complain, there will be no incentive for the govt to change. At best, the government will keep things "barely" running. Only if it affects votes will they change.

We are all scrambling for the last crumb of bread. If it was just for me i would leave that crumb for someone else. But my kid needs and deserves a whole loaf and I intend to get it by whatever means. My child is my child and his life is in my hands and i dont give a damn about bumping queues, pissing people off or anything else. IF i thought about everyone else at the same time as thinking about my child, i would get nothing for my child. We all need to be a bit ruthless when resources are meagre. I am quite able to get what i need without being rude. I can however be very forceful and dont mince words. If that affects the sensibilities of an slt, then too bad. Its not personal.

I used to be a teacher and I'm used to parents who think the whole world revolves around little Johnny. However there is one huge difference. Little Johnny has access to his basic education. We're not ighting here to go swimming with Dolphins we're asking foir basic services.

If LEA after LEA decided not to teach children to read or write because they did "not have the resouces" there woud be an outcry. Yet we're expected to accept the equivalent for our children (and that's not being overdramatic- PECS gives my son a voice - and we had to pay in the end to be taught it- and then I had to try and teach the school). And when we do complain- we get labelled agressive and ungrateful and eyebrows get raised when our names are mentioned. One salt told ds1's school that I was "well known for not being able to accept my son's condition". Apart from being laughable- I suspected autism a year and a half before diagnosis- she hadn't ever met me, or my son. How DARE she tell the school that. I didn't complain because I was more concerned with securing speech therapy for my son than running getting into a battle of words with some speech therapist I've never even met.

I can't read all of this thread, its too long. I've read bits though.
First I was really quite surprised by the original post as I am not aware of a general anti-professionals attitude here. Sometimes specific situations are described where a professional has not behaved acceptably and we all agree that its a disgrace, but generally I think we are all desperate to see professionals, not avoid them.
I was amazed to see that someone has suggested lying to get up the waiting lists on MN, I've never seen that, is it true and did I miss it?
I agree that parents of children with SN can't put a priority on avoiding upsetting professionals but should certainly avoid doing it.
One of my many observsations, having been involved in SN for some years now, is that everything (the whole world not just SN etc) boils down to respect!! Parents and professionals should always start out with a respectful attitude, unfortunately not both always do.
As for lack of resources, that's another issue. I still think that we are entitled to a great deal in this country but getting it is the struggle. If you read any US message boards you would be horrified by the wranglings with medical insurance companies (for autism treatment) and Due Processes against school districts. Thank god for the NHS and statementing (while we still have it) and DLA (despite awful forms) and Carer's Allowance etc etc. There have been big court cases in Canada recently about ABA entitlement and that it will be cut off from age 6.
I know I have been lucky, mostly by pure coincidence of where I live I think, but I have taken time and care to develop good relationships with our local professionals and, apart from anything else, it really is the most EFFECTIVE way to do things.

I think that there is a world of a difference between berating the government for lack of funding and having a pop at people who are often trying their best with limited funds.

I realise that I don't do what I would like with the kids with sn that I teach. I would be hurt beyone belief if a parent had a go at me, given that I bust a gut to do what I can. But in the end I don't have the time, resources or support to help every child reach their full potential, much as I would love to do so, and know that their parents want it more than me!

But in the end I am not to blame, and having a go at me doesn't help. Have a go at the funding. Have a go at incompitent individuals. I'll be with you all the way. But most of us do what we can, when we can.

BTW mogwai, as a parent I would say stay at home with your baby. As a parent of an SN child I would say get back to work! Seriously, I would never begrudge someone taking maternity leave.

but hmb no-one on here has had a go at a professional who is doing their best with limited funds. We've had goes at professionals who haven't been professional Like Davros I've actually found the best way to get anywhere is to deal with peole face to face. Search for my name, wade through the posts and you'll find that for example I always suggest trying to get to know the statementing officers-- we got a lot further once we'd all put names to faces. Limited funds or not some professionals are crap (the first SALT who assessed ds1 in Devon for example) but unfortunately they can then affect how much help you get. Personally i think the teachrs at ds1's new school are complete saints. The ones at him mainstream school were failry clueless but it was easy to differentiate between those who tried and those who didn't.

Davros- on another thread coppertop suggested that nutty rang up to see whether there had been a cancellation that she could use- following advice her SALT had given her to do this. I think that is what is being referred to, but I may be wrong. I also said "chase it up- although we waited 11 months for one for ds2, so definitely worth asking for a cancellation." I'm not aware of any other incidences. ON the same thread I suggested contacting nancy kaufman (my fave as you know ) in the States as we found she gave useful advice by email when we were desperate for help with ds1. I'm not aware of anything else that could be construed as lying and complaining but I may have missed it.

Well I was a bit insulted to see that we're supposed to be telling people to lie to get up the lists but thought maybe I had missed something. Of course try to get a cancellation and follow up, common sense!!
I completely agree that getting to know the people involved at the LEA makes a huge difference. I'm sure they'd rather I hadn't taken stuff in person but I did it deliberately so they would remember me and not treat me as a number. In the end I've been quite friendly with some of them for some years.
Another of my famous observations is that there is a huge difference bewtween (most) health professionals, especially therapists who see you and your child, and the LEA administrators. That is why you have to break down the LEA people!
I've got a friend who I really like and respect but she gives every professional she comes into contact with a hard time. I often agree with her on many issues but she has no discrimination on what to pursue and what to drop or leave for later. I know they all think she is a total pain. She does usually get what she wants but I'm sure she also gets deliberately avoided. I just don't think its effective or pleasant. Her plate is soooo full, she will never leave anything and its all just such hard work. I think it is important to prioritise and pick your battles. Mind you, some parents are SO passive that I can't believe it..!

Davros, on the thread that Jimjams is referring to I suggested that Nutcracker rang up and asked when the appointment was because round here they often don't send out appts until 2 or 3 weeks before even though they may have been made a long time ago. I said that then you could check that the appt hadn't been forgotten (which has happened to us several times) and ask about waiting times. I don't know if this is what mogwai was referring to. I wasn't trying to suggest that you could jump the queue.