Feeling patronized by professionals

[Violet5]

Hi,i just felt the need to let of a bit of steam...on this occasion about Occupational Therapy. I just wondered if it was just me or if anyone else out there is particularly unimpressed with their child's O.T,and Occupational therapy as a whole ?.

I've had one involved in my daughters life for almost 11 years now and the same one in my son's life for about 6 years now.
My daughter has severe CP, and my son is asd with dyspraxia,he has very low muscle tone.

Anyway over the years i have had advice like 'try and get your daughter to play with playdough etc to help her fine motor skills'....basic common sense,to call it advice i thought was a bit patronizing but fair enough.

Then yesterday i found myself being totally peed of. I recieved a recent assesment of my son by the O.T done at school,the assesment said pretty much the same as it has for the past however long. That in itself didn't bother me.

What bothered me was that along with the report i recieved 2 photocopied leaflets.
One about core stability and one about low muscle tone. So after 11 years of caring for a daughter with low muscle tone and then another 7 years of looking after a son with low muscle tone and spending all that time doing my damned best to help improve their muscle tone i finally get 2 leaflets in the post with some generic info about muscle tone.
I might add that these came from the same O.T that has worked with my children for the entire time and hopefully knows i do my best to help my children.

On the whole i have come to feel that having an O.T's involvement seems to mean nothing more than someone writting down observations of what problems your child has doing tasks and why and then suggesting you do more related tasks in that area to help them.
I could have wrote my son's latest report myself and suggested future activities for him and saved anyone else the time and effort....i could have probably even picked up the leaflets myself !

I wrote this after reading the thread about NT parents and the advice they give because i've found the advice given by profs has often not been much better .

Sorry just needed somewhere to vent {smile}.

Sorry about this, must be very annoying.

From the other side can i just point out two things?

Firstly, most parents don't actually do the really sensible obvious things that a professional will recommend.They often go into helpless mode and assume an overworked professional will sort it all out. People's lack of initiative staggers me.

Secondly, maybe the leaflets have only just been produced? in an overstretched dept, very little time to work on stuff like this (although everyone knows how important it is), Maybe she was just showing you what is new in terms of resources?

Not saying you haven't a point (you have!) but this is the other side.

Hi Violet, I think its like any profession, you get good & bad.
We are fortunate that ds2 had any absolutely fantastic OT that gave us brilliant practical advice & therapy rather than just assesments & reports.
But I have had appnts that have been pointless.

I know ask myself, What is ds2 or us as a family getting from the service offered.
If the answer is nothing then I politely refuse the offer of support... I always give it a go first, just incase, but if there is no benifit then I don't continue.

As far as possible I always try & work out what I want from a therapy or appnt, I think it always helps if everyone has a clear aim.

It all sounds a bit harsh but it is the only way I can deal with it, I tend now to put emotions to one side & go in to work mode when dealing with ds2's profs.

Anon, that is very good advice.
I tel people that I am a resource, one they may or may not need. No point trailing around after multiple peopel and appts. if it is not bringing a real benefit to you and your family.

I am similarly ruthless when dealing with 'professionals' about my own children.

Thanks moondog,

I guess it hadn't occured to me that most parents don't do the really sensible obvious things.
I was just comming from the stand of having spent over a dacade learning everything i possibly could about my childrens disabilities and any and every way in which to help.
I guess thats why i felt frustrated/peeved at having receieved 2 leaflets in the post with such generic info in them.

I think you are also right that they were probably just sent to me because they were new/had just been produced.
I guess for some parents that hadn't spent so much time reading up that they might have been informative too. It would have been good if they had anything about resources in but unfortunately on this occasion they didn't,just said for more info contact childrens therapy dept.

I do see though that it must be equally frustrating when parents assume an overworked professional will be able to sort their childs problems out (and hope you've got a magic wand lol).

Thanks for replying from the other side !

So far (touch wood) it works for us, I ask for what i think ds2 needs or would help him, they either agree or we have a discussion about alternatives or why they cannot provide what I have asked for.

There has been many times that I have been wrong about what ds2 needs (although i have never admitted that to dh)& ahve left an appnt with a different opinion, likewise sometimes the professionals will change their mind.

Violet, it may be that you need a break from OT for a while, if it becomes more of a PITA then help then just give it a rest for a while. As you say you have enough experience now to know what youa re doing anyhow.

Thanks too anon.

I have actually politely now declined a couple of resources for my daughter that i felt we no longer required. The only one we have kept is the physio.

I also try to put my emotions aside when dealing with things.
I think just yesterday i'd not had the best of days with my son who as of yet is still having a range of interventions. Then i got his report with 2 general info leaflets included and i felt like 'for gods sake tell me something i didn't already know'.
In honesty the only reason i haven't politely declined some of his interventions is that they help the school in realtion to setting him targets etc.

Just felt the need to have a bit of a rant.
Feeling a bit more like my more tolerant self now lol.

If all else fails there is always wine
Glad you are feeling better today!

Thanks anon, and ha ha yeah, i often look forward to wine o'clock,which is usually sometime around 9pm if i've had one of 'those' days

Hi Riven,so sorry to hear that.
Not sure how to reply, i just think life is so crap sometimes and just so unfair.
I moan a fair bit but know i'm lucky really in many ways.
Take care xx

Riven, maybe a really creative OT could be informing you of equipment, grants for equipment, places to go, holidays etc., that could improve your dd's enjoyment of life. Sometimes I think professionals are so focused on function that they forget to see that disabled children need the same fun and stimulation that NT children take for granted. The role of an OT is very broad and should be holistic.

Our NHS/LEA OT is like this. I put it down to her being massively overworked. She just doesn't have the time to work with ds properly, find out where his current problems/areas of concerns are or discover how well- (or ill-!) informed I am.

I'm coming across this more and more. I ask a lot of questions. This is my impression of local authority staff in general:

They study their profession to level 10 and qualify.

They get their caseload.

They give up their will to live.

They spend a year working out what level your child is at (usually 1 or 2) and then they give you some strategies with a plan to meet you in 3 months time (which turns into 6 months)

You, in the meantime do your own research on their expertise that is relevant to YOUR child. You work hard and move your child on. (you get them to level 4-5)

They come back and have to look at their notes from 6 months ago to check your name. They look at the strategies they gave you and give you a couple that build on it. In the time since they last saw you, they've doubled their case-load.

The strategies are completely inappropriate to your stage and your knowledge, so they wing it and leave with a sigh of relief making a mental note that you've done well and they really will look up strategies to compliment your work.

3 months later, their caseload has increased. They never had the time to look up the appropriate strategies and only had time to record what the previous ones they gave you were, and so give you one or two that will build on this.

In the meantime you are frustrated that they haven't got a clue about your child and don't know what they are doing. You'd be right, but it isn't usually a capability issue.

This has been my experience anyhow!

(Although you would be staggered at how few families put in the work, it has to be said.)

I think there are some good OTs and no doubt some kids who benefit greatly from OT, but imho there are also a lot of charlatans about, whose kneejerk reaction whenever an autistic kid strolls into view is to say they have "sensory needs" and to prescribe a "sensory diet" which almost always seems to consist of that fucking useless (imho) cushion thing, a yoga ball, and some cross-body exercises. I remember a nice OT standing there telling me that my ASD DS's upper body reflexes weren't working, and that if he fell there would be no instinct in him to put out his arms to break his fall. AS SHE SAID THIS, she accidentally let go of the yoga ball on which DS was balancing at which ... he put his arms out to break his fall. We were both tactfully speechless, but had this not happened I would have invested time and money in bloody upper body exercises when actually they were not needed and the time could have been better spent on his language and behaviours. And if one more person tells me about those sodding weighted jackets......To me, it's like saying that all normal kids need to do the same thing. Not all autistic kids need that cushion.

After almost two years of me fighting DS's corner, and telling everyone he does qualify to see OT, they finally gave in.

He has now been given one poxy bath seat......second hand, with the previous owners mould on the feet

Maybe his OT is over-worked, but she just comes across with a 'can't be arsed' attitude.

They won, as I cannot be bothered anymore...I have more important fights to win...

Okay, I won't chase OT any more then.

'My' OT is fantastic - but i think these things are all luck of the draw.

Whilst not arguing against public services, it would be helpful if some parents weighed up the cost and effort of getting somethnig themselves against waiting for the rusty mechanism of the NHS to kick in.

A lot of it isn't rocket science. Ask them for one of their 'trade' catalogues and have a flick through it. I often do this with SALT resources-go throguh it with a parent and earmark what would be useful to them or let them flick throguh and then advise on what has caught their eye.

Get family to chip in too. Often people are at a loss to thin kof what to buy a child with specific needs. Better a useful resource than yet another cuddly toy.

I recognise the scenario described by moonlightmckenzie.

One thing I find helpful is to email my SALT quite a full update on DS2's "status" about a week before the next visit. Then at least she's already moved on in her mind before she sees us. She looks at my update before looking at the old less-relevant notes.

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We had a similar experience when DS2 had his initial OT evaluation. I was already pretty clued up, yet the therapist made no effort to ascertain whether I was a well educated mum who had swotted up on everything while waiting over a year for DS1's evaluation or just plain clueless. She assumed the latter and rubbed me up the wrong way with every word. I also felt she was invasive of DS2's personal space. Of course he looked like a rabbit in the headlights. She picked him up and spun him around and she's a complete stranger.

The most humiliating thing in the whole of the evaluation was the fact that the little boy who had previously shown no interest at all in picking up and using a pencil scribbled all over her notes. I got the whole see what he can do when he's encouraged in the right way speech. Sorry miss, but when I encourage him to draw, he gives me the pencil and makes me do it (and 18 months later, still does for the most part).

But yes, we then got a long report stating the obvious (though having that in print turned out handy later on when I was applying for his statement). He was then transferred to the therapy team in our own part of the region who took forever to see him because they're so understaffed and ended up signing him off after a few months because there was nothing they could do with him with the resources they had and they realised I was already on top of the sensory stuff.

In contrast, though, we have a SALT who thinks I should be working in her field and an autism consultant who visits the boys' school who was trying to encourage me to set up a local support group because we have nothing in this part of the county. Our HV trusts my judgement when I need her to pull some strings for me and the kids' community paediatrician is also an amazing woman who treats us with a lot of respect. The positive experiences I've had with these people are probably the main reason the OT experience was so upsetting to me. I'm just not accustomed to being talked down to like that.