children with SEN, parents and professionals - what makes a good or bad experience?

[BBBee]

I am training to work with parents with children with SEN. I am very interested in making sure that I deal well with giving information and am able to make things clear and comfortable as possible for the parents.

If you have any time to put down a few pointers about any good or bad experiences you have of professionals dealing wiht parents of children with SEN it would really help me get it as right as I can.

Thank you.

IME the worst appnts are when you come away none the wiser, so if you are giving info, pick your words wisely but don't try & sugar coat things so that the info isn't understood & the message is lost.
Allow time for questions & for parents to gather their thoughts & think of the questions they may want to ask.

Be honest if the local system has massive delays and waiting lists due to resourcing problems - don't try and defend the indefensible. If possible, be approachable - encourage parents to contact you if they have any questions after the appointment.

Any thing that judges my child by the standards of nt children or blames me for my childs sn.(We get so much of that and it is particularly destructive from a professional!) Failing to seek or listen to our views. Shocked or distressed we may ask seemingly odd questions and may need support in discussing the fundamentals! Having a telephone contact is very useful for all those points we forgot to ask at the time.

Dont use jargon that nmake the parents feel excluded staright away but then dont treat them to suck eggs either...treat them as the expert in their child.

Be friendly and genuinely interested, dont make promises that you cant keep and always follow up anything that you say you will.

Make sure that you are truely listening and not just hearing what the parents have to say.

Always aim to help the parents feel empowered, not always possible I know but just by the realisastion that parents will often have left appointments feeling alientated and oppressed and have often felt lost in the whole system.

Be honest and as TC says dont feel that you have the defend the indefensible.

And lastely (if you read through to this!) be approachable and accessible. Offer your contact no and email if possible for any quesions that parents may need answering.

thank you this is all really helpful and I will take it all on board - any more advice?

Well this may sound harsh but I am not sure how to say it other than bluntly.
Try not to assume that the parents sitting in front of you are total fuckwits until they give you evidence to suggest that they are.
DH and I now know our son and his issues pretty well and it is very tiring to sit through the first 20 min of any meeting whilst some well meaning twit looks at you withtheir best symapthetic doe eyed look and talks to you as if you are a five year old. If you find yourself tempted to draw pictures , resist the temptation!
Whilst parents are always eager for new info and may be very new to their childs diagnosis they DO know more that you do about THEIR child. I was an expert on my son before he ever got his diagnosis.
And whilst you need to use specific terms of course try to avoid twatty management-speak... so don't "diarise an multi- disiplinary interface" say you will get together with other involved professionals.

And do not ever ever ever say "I know how you feel" or "I know this must be difficult" because you have no idea unless you are living it.
sorry to be blunt! I am nice really . And very good luck - your asking this question suggests you will be a great asset to your parent clients.

Agree with pagwatch

The best professionals we've seen (i can think of 2 outside the school- who are excellent since we've moved to ALD/PMLD) listen to us. Our paed now asks me for information Writes down references and websites and names on pieces of paper then goes off and says it might be useful for others. It's an information exchange. Next time we're seeing her I'll take some papers about autism and catatonia and ask her what she thinks re it and ds1. I don't expect her to have instant answers, but I don;t mind as she listens then goes off and asks other people if she needs to.

And never say 'all children do that'.

Oh I thought of 2 more excellent pros but they're in the States and have years and years of hands on experience.

I find it helpful to have direct access to people who deal with my ds, i have the hearing consultants direct number and the secretary to his paediatrician has given me her number too.

Get to know how the voluntary sector works. In a perfect world, my gp should be able to direct me to all i need in both the statutory AND voluntary sector. Alas, he knows nothing of how either sector works.

The average clinical psych or ed psych doesnt either. they work in two different worlds. But for parents, we need access, immediate access to what is tanglibly available that will help us and our children.

finally, never NEVER ever think you know more than someone who living with a child who has a particular difficulty.

my son's ed psych for example, she is about 40, never married, not children and she is trying to tell me about how to handle my child's outbursts at school, totally from her book references. She has no idea whatsoever.

there is so much you can learn from parents, we live it breathe it, everyday and even though parents may not express to you their experiences in parly that is acceptable for a peer reviewed paper, a good listener will glean a lot from a parent, any parent.

I agree with Mama - anything I have found out about the voluntary sector and support groups has been by lucky accident. It would be much better if when saying to parents - oh yeah, you're stuck on a waiting list, but well done you for getting your child referred - health pros could say - but in the meantime, you could try doing x/y/z or going to x/y/z group.