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Parents help(90 Posts)
Very rarely am I put in the situation , and stuck for ideas so Im turning it on its head. Be ruthless and honest because I need help.
I work within SN and currently working with a family . They are very hard to engage and I have to approach the fact that I have reasonable evidence to suggest their child has ASD.... I cant give out anymore detail but
They are very very hard to work with never in my time and bounty of experience have I come across a family like this.
Please , as a parent what would really tick you off if I approached this with you and what would make you want to get on board. Im just seeing if anyone comes up with something I hadn't considered.
I've got plenty of support avenues to persue work wise as alternatives but lets face it who knows better than someone who has been there and done it . I can see it from both sides but .....any suggestions .
What makes them hard to engage?
Do they have previous experience of being badly burned by support services?
Could one of the parents be on the spectrum but in blissful ignorance of that fact themselves?
Do they just not like you as an individual? (personality clashes just happen sometimes with it being anyone's fault).
Are they child led, alternative, lentil eating, macrame weaving, let nits live free types?
Are they uber right wing, look down on lefty public services and resent that they can't afford Eton types?
Are you a mere female trying to advise people from a male dominated culture that their pfb boy may be less than perfect while wearing a top that shows your cleavage?
Do you have a posh accent, and are dealing with "the salt of the earth"?
I also can't stand being patronised - I might not be an "expert" but I'm not a fool, and don't like being talked down to like a naughty 15 year old.
Are they just plain scared?
I hope to god the day that I talk down to a parent is the day I lose my job.
Culturally I feel part of it may be that I am a women ... but sort of can't avoid that fact right now.
It's difficult ,without giving too much away as I know some of my renties are mners. They are aware something is wrong but they have the feeling that a lot of academia and 'learning' will correct the situation. ...Something I have come across many times as we are often first intervention. But somethings different about this family , the questions they ask and their attitude.
I think yes they probably are scared , were all scared of the unknown and I am trying to make the idea of extra support more familiar.
Basically what they want is us to jump when they click. This child hasnt been with us long but long enough , and we have worked with the parents very cloesly it wasnt an easy transition.
We are their first glimps of the education system in this country so I dont want to stuff it up.
They are the sort of book smart people who dont have any logic ... probably the complete opposite of myself but I still feel we are able to connect enough to work together successfully .... If I begin to feel otherwise I'D discuss wether they would like to swap keyworker.
I think my way forward is to going to have to be to force them to be logical by out book smarting them. I've given them some of my own professional material for them to divulge.... Carefully selected but I think its the way forward as I often find material directed at parents says exzactly the same but can be really patronising.
Thank you for your suggestions .
Well that is all as clear as mud.
Perhaps they don't want or need your input?
There are lots of ways of helping a disabled child reach their potential. What is it that you have to offer that you feel is such a guaranteed answer to their situation?
What is so different about this family and why is their attitude of such concern? It sounds like they are hopeful for their child, in that they see education as an answer.
I would also be very reticent about coming to a dx yourself unless you are a developmental pead. It takes a team to dx ASD, and time. You will not in dear yourself to anyone by overreaching.
It does sound a lot like there's a spectrum parent going on there - the need-to-know and be superior in knowledge is often a defence tactic, I think you are a very thoughtful and clear headed person - it shines through in the way you post.
And with respect, zzzzz, if you're working in asd services (I did for 16 years) and you see it every day, then tbh you know what you're looking at. No, we don't diagnose, but that's the beauty of it, we can offer more gently pointers and not have to hit anyone too hard with a diagnosis. And it sounds as if Fluff is one of these professionals who gently guide in her support role and help families see things a bit more clearly. The trouble is, that if they don't want to look, or they are really honestly too close to see the difficulties - and some are - then it can be a very tricky job involving much walking on eggshells and very subtle pointing rather than anything more upfront.
If the culture thing says that you being female puts you at a disadvantage, have you considered meeting with the females / bringing a male colleague on a visit if there is one / explaining what makes you qualified and professional in your status (sorry if that sounds wrong) - I think I've come across a similar situation.
I wouldnt turn around and say to them I think your child has ASD because its not in my remit.... I'm their only way of refferal at the moment.
If I were to ignore this childs needs it would be doing child a great injustice and the family don't access any other services or groups etc.
It is just us.
I have solid evidence and a lot of experience in working with asd to know typical behaviour . But like I say I wouldnt suggest or 'self' diagnose it . I could loose my job for doing that.
I have to convince this family that they need to visit someone ... or let someone here to rule out my concerns ...or act upon them.
They say that they want help ...under no pressure from myself. But then don't actually go to SALT despite me saying that this is one of my first ports of call , and that they will either say they have no concerns or give child some help.
They want help but then they dont...and they also try to play staff of eachother.
I am doing as much as I can to help child within my service but its gone beyond things we can help with. I honestly think I've explained myself to them in a fair and reasonable way.
I've worked with lots of children from 2-18 with SN. With various conditions and various degrees and this child will be starting school next september. child will need extra support and the only way for me to get that in place is to go for a statement. Or a letter in lieu.
It really would be a great injustice for the child if I ignored my concerns ...and the parents are concerned but the problems child is having need specialist support in order for child to 'progress' academically like the parents want.
Although my feeling is childs priorities at this point shouldnt be academia as child isn't possesing life skills that a child at their age should ...which is what im working on at the moment.
The parents are putting their needs/pride/cultural perspectives before the needs of their child . Child isnt in danger but its doing a great injustice. And when things get cultural they get so tricky to deal with. I really wish I could just blab rather then being shady but I really cant. Can you kind of see what Im trying to say though ? :S I think its a bit rambly
The sketchy info about this makes it nigh on impossible to comment in any positive way really.
I suppose we have to assume there is 'good cause' for your particular involvement with this family?...we don't know what has brought this about though...no nuts and bolts clues??...what sort of remit are you working from? what is it you want to achieve with this family?
I don't know if you're out smarting sort of approach is very conducive to developing a positive relationship either...I'm not sure thrusting books and info under my nose would be appreciated by me iykwim??
I'm not sure I've ever met a specialist who was working so hard to support anyone who didn't feel they wanted/needed it and thought they were doing fine personally.
Has there been a crisis for this child and the family won't acknowledge the seriousness and are in denial about possible causes or something...????
I think for anyone to make any useful inputs, you will need to be a bit more specific about things first
If its a culture thing some cultures do find anything such as ASD difficult to accept and understand, it might feel to them like they have caused this or they are cursed or that the child is just different and will have to learn to cope in the world - whatever many different reasons? Maybe ask them how any cause of concern in regard to a child having possible difficulties would be dealt with in their culture - start at the beginning and explain how the process works here?
my post crossed with your last one oooppps...sorry
MrsShriek3 The whole woman situation is tricky there isn't anyone I can think of or call upon who is a male , the parent also reacted very badly when we had a male childcare student in the service with us. In a very odd way so im thinking the whole male / female situation is a no win situation. My SALT list is 4 months for one to one sessions at the moment and its easier to put things in prior to school here than once in school ...so hence my urgency ...without trying to rush them lol such a see-saw situation
There is a huge difference between highlighting delays or unusual behaviour and focusing in on a particular dx. Why on earth do you think there are multi-disciplined teams if a single individual who "has their eye in" is much the same?
I'll say again "what is it you have to offer" that will help this family and their dc? The answer to this question is the key to how to approach the family.
I'm not sure about the cultural aspects of your problem as I come from a multi cultural family and have found it to be fine. Perhaps it depends heavily on the individual's involved. If the problem is less cultural and more social, in that this family are better academically educated than yourself it might be wise to refer them on to a pead, especially as you feel ultimately this is where they are heading.
I do agree with zzzzzz I think you should refer to a paediatrician.
maybe you need to find out more about their cultural background?...how is this sort of situation viewed within their country? What support or not would there be and how do families generally view possible disability within a family.
I think understanding this might help you move things along...maybe?
wasuup3000 I didnt think about approaching it in terms of if they were at home. And I do know that in the long run they want to return which might also be part of the putting it off as I know the country they are from arnt very modern in their attitudes. Thankyou I may do some more research into this over half term , then see if it leads anywhere.
To add to the info Im in an early years setting part of the time which is where I first met this child. So child access's that part of the service for funded pre-school place. Its my job to get child school ready / get things in place for child to cope at school as well as making the place accessible to child. The first bit I cant do myself , the second bit I can. Without added specialist support and intervention I cant see that child will be given the chance to reach full potential. Child needs specialist support with communication in particular as speaking jargon repeated words for three hours straight and comprehension is not at level.
Parents have another child who is just at that age where its becoming obvious that Eldest DD the one we have , isn't the same as DD2 and parents have said to me that they are aware of this.
Why do you think a male would be better placed to help?
Is this based on something said, or something you feel?
If they were uncomfortable with a male colleague you may find the whole "bring in a token guy" idea is totally counter productive.
Why if you suspect the child has a developmental delay haven't you refered on to pead anyway?
I think what would naff me off most is either pointing out the obvious, going for a stereotype (rather than individual) or bombarding me with info/theory that I already know, having just re=read the OP.
The other point made about starting from the basics of the purpose of early intervention and the pathway you're taking to refer in the correct order or direction to get their child the right support/intervention/diagnosis, may well be the best way to go
I do think that Fluff is trying to get this right, and there are criteria for referral which have to be met before a case can be referred - if you like it's a sifting process to refer on to the pathway to diagnose a potential difficulty. Yes there are a number of professionals involved, but this is the first part of the process where someone needs to make a basic judgement about which way to refer. There isn't a one-route-fits-all means to diagnosing, unfortunately.
I can't refer direct to Pead in my LA I have to go through Ed psyc orr through SALT . Those are my two pathways. SALT they have to go to drop in , Ed Pysc needs to come in to me and need parents permission and the last time I had that conversation they wouldnt agree , I dont want to pester but THEY are telling me they have concerns , I've explained I need to get someone else involved in order to provide/ get more specific help . But then when I tell them what we can do to help with their concerns they dont want to know.
I have never met a parent before who is so concerned but so unwilling to do anything about it .
If we are talking about 2 little girls and mostly dealing with Mum, I think being female is probably a plus for you.
I dont think a male would be suitable to replace the part I am playing at the moment as there is a very much 'this is womens work' attitude . But what concerns me if it should get to Paed . the one they would get reffered to is female.... I guess though by then they will have been through SALT or Ed Pysc who I know all of and who are all women so perhaps attitude towards professional women might change.
Dad knows I have a BA hons as we have had that convo previously as he is studying himself. So inferior education probably isnt a part of it ....
Maybe their just odd people and I havnt quite got them yet ...either way the situation with the child in the setting stands the same.
Could you try getting them to see their GP for referal? Perhaps say you know they are concerned and you think this might be a good idea?
You only know your corner of the picture. They may be planning to homeschool, or seeing someone privately, they may not be aware what help is available, they may know of other children in the family with similar issues or siblings and be preparing the life they want fo their child.
perhaps they believe that they have agreed with you and are expecting that you will take whatever decision and steps to progress to assessment, etc...are you sure they are fully realising that they really must be willing to meet with these specialists, etc to move anything forward at all...maybe they are parents as parents and don't see their role as needing to be at appointments iykwim...maybe they don't fully see that they need to be there at every step...
Fluff, my gut feeling is that they don;t know what the referral to EP or SALT involves, and are therefore afraid of it or sceptical. Maybe there's an information job needed, much explaining of the next part of the process. If I was told that my child was going to be referred on to blabla that I didn't understand, I'd be bothered too, iyswim. Some people don't know the difference between the diagnostic routes and fear what will be happening and how fast - you can quite easily provide the info to fill in the gaps and make the process clear and unthreatening iyswim?
I really do appreciate all these different perspectives though , its not something very easily obtained when other staff are involved.
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