Parents help

[Fluffanstuff]

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 .

Ah, - tell them to come onto MN !

Honestly, - you sound like a consciensious professional and I can see you're trying to do your best for this child and family.

Some of us are VERY disillusioned with provision for SEN, especially in the early years. SALTS don't know how to reach children with ASD, 1:1s are woefully undertrained, teachers have less than an afternoon of SEN in their teacher training which is all about 'managing' a child with SEN rather than teaching them, OTs don't exist.

In some ways, what is the point anyway?

I think as long as you are happy that the child is well cared for, the parents don't punish or overly react negatively when they are told their child is presenting issues at nursery, etc and possibly not appreciating or acknowledging 'there is a problem' then I'm not so sure you need to be over thinking this and maybe pushing them any further iykwim at this time (regardless of time, waiting lists, etc)

Surely the advent of a primary class room, school building, timetables, being able to sit at a desk, expectations and the environment will likely bring many of these issues to the fore immediately...the school will have to provide as much support as is necessary (whether that is for their own sake initially or for the child)...either way it will move forward as a matter of urgency and decisions for their welfare and needs will be taken?...(all hinging on actual funding and ability to provide anyway)

Many of us already in this system have battled years just to be heard that our children have difficulties and need supports...we are all fighting very hard towards what our children need and what provision is best suited for our children. There are families here who have children almost going into High School and have been battling for supports and interventions to help our children for many years and much heartache and desperate pleas....you are not going to wave any magic wands with this...just because you have an opinion at this stage....
Perhaps the parents are more aware of this reality than you imagine and are going with the flow and just going to keep doing what they believe is best for their child at home...?

I think you've probably misunderstood your role a bit. You talk about 'signposting' but then get frustrated that they aren't following your advice. Signposting is exactly that - you can take a horse to water but can't make it drink.

You can only keep communication open, give affirmative feedback if they raise concerns, and say 'normally with a child who has these issues, we like to get support in ready for starting school. The way to do that is by seeing x at so and so, so that they can write a report recommending support.'

Once you've done that, there's nothing more you can do.

yes, many of us have pursued referrals v keenly in the pre-school years to no great avail, so even if the family were more cooperative it may not really make much difference to the outcome tbh.

Lougle with all due respect I've been in my job long enough to understand my role . and have been commended by the LA and by ofsted in the service that I provide which results on my getting an average of 6 children with severe SN referred to me by other services a year for children to access their 3yr old 15 hours and funded 2 year old spaces.
I understand I can take a horse to water but I cant make them drink , and am well aware of what I have to provide support wise in terms of the law. Without extra help I can only do the bare minimum ,surely you would want the support for your child , if you deemed it appropriate , to be more than the bare minimum if it meant they were going to have more opportunity to acheive ?

Im well aware of what goes into the dx process ...have supported parents enough times through it. What I wanted to gauge from posting on here was some differing views to parents I have already worked with as it may help me support this family.

Cp is not casually diagnosed but when a parent explains to a gp various and sever medical issues and the gp turns around and says 'they will grow out of it' on more than one occasion to the point where the parents had to ring hv weekly to get more action taken, which of course was supported by us , I am by no means going to suggest a emotionally vulnerable family go to visit a crap gp ... I know through paperwork their one is the same doc. They know its an option to go there if they wish to do so so I havnt withheld that information and I havnt including any of my opinion on that route with them.

If I am one to one for a child / another member of my staff is then I have to pay for another member of staff to support the rest of the group. Not in all cases but in this childs case as she can be violent to the other children. 6 children can sometimes mean 6 members of banks staff ...understand why I need to get extra funding ?

I completley understand that Education should be inovative and flexible to a childs individual needs. This childs individual needs requires more support that we can give alone.

From what the parents tell me , they need someone who help them within the home to put suitable strategies in place , I have explained that in order to access them the blanket assessment (not dx just assessment) at the clinic will need to be done , and explained the process. I can think of at least 3 different services that can help but wont without the basic assessment taking place , I have been honest with the parents in this respect , theirs no point in me keeping secrets , the only thing I havnt told them is that we suspect , with a lot of evidence to back up our suspicions , that she is on the spectrum. Because that ISNT my job to do so.

I literally posted on here to gain differing views from people who have been on the opposite end to allow me to consider the situation from points that I havnt come across before.

At the end of the day I have a little girl here , who has little to no communication other than bable , jargon and repetition of 3 different animals names. She head bangs and the parents wont take her out because of the issues she presents when they do go out. She will hit other children, has a severe ad version to mess / dirt and will wander round , stare at the sky and then scream. She is unable to follow simple instructions , she is very physically able good at climbing , using scooters etc and colour matching. She has lots of obsessive behaviours, she will go for the same 2 toys everyday and walk around with them in her hand. I have managed to get her to enter the pre-school without support ..which took a lot of working with the parents and thinking outside the box . I've managed to support her and work on pre-school routines like snack etc. but shes still eating baby food at home , the parents dont want to do this but they dont know what else to do. They admit they need help but what I am offering , all that I can offer they arnt taking up.

Any other child displaying those behaviours would have had some HV intervention but due to them moving country's regularly this hasnt happened. I also have said that I can / they can contact the hv as as a step forward.

But do you understand why I cant ignore this and why this child needs more help.

I think unfortunately her needs will be ignored unless the parents are in a position to fight very hard to get them recognised - I did the 'pushy parent' bit when ds1 was about 20 months and moved heaven and earth to get a dx but at the end of the proverbial day, there was no more help available than if we had taken the 'sit tight and wait til the authorities tell you what to do' approach. The harsh reality is that there is very very little practical hands on support out there and pursuing a dx will not in itself change that. Most autism provision in our area is geared to the pre school year and for reasons that may or not be unrelated very few dxs are made before that age group - irrespective of severity of the SN. I too have met many many children with ASD/GDD/obvious developmental delay whose parents tell me 'He's in the system, it's so serious that we're going to be seen again in 6 months time and in the meantime nada' I think you personally cannot change that reality though I agree it's heartbreaking to see happen in front of you.

"Any other child displaying those behaviours would have had some HV intervention"

My son had many/most of the behaviours you list but my HV told me she had no concerns 'at this stage'

yy, furiously nodding in agreement with willow. IME HV was no help whatsoever, maybe things are different in your area.

I think you need to try and separate off in your mind what should be the parents concerns, in the sense that easing your setting's budget isn't really the job of the parents. I am sympathetic to your frustration that they won't take the child to SALT, as a good SALT could make a positive difference.

I appreciate what Im writing is probably a bit too open , its just difficult trying to draw the line before I give too much away and get into trouble lol. And I know im probably not coming across but I do really appreciate the spin everyone is putting on it . Its easy to get caught up in a routine when your used to dealing with parents who one a whole have generally dealt with this situation in roughly the same way.

I do agree though that perhaps giving them a few options to explore themselves such as MN might give them a bit more support ...with the addedd bonus that its typing rather than speaking so the parents language barrier won't come into play as their written english is better than spoken ...hence why I seem to spend a lot of my time writting in childs communication book aswell as talking .. just incase the understanding has been missed.

I just find it so frustrating , I come on here and read about parents who have fought for years to get some support , and then im in the position and so is my LA to provide support , and some ...not all but some of their services are done really really well and have huge benefits but its all list ticking before you get to use them. Mind you their impact might be reduced if the entry criteria were more relaxed as they would be further stretched.

I am in a funny old borough and without completely giving away where I am theres things we do differently to the rest of the country.

willowcat I have met many a shit hv , I know the team I work with atm would have made some kind of recommendation about this child though ... even if it were just a bit more liason work with the parents.

OP, Have you tried suggesting they bring in an ABA consultant to assess their child's behavioural needs and then give them strategies to address these?

These are usually not available 'in the system' and so the parents might feel a bit more comfortable with them being outside of the system iyswim, and they only deal with issues and strategies, not diagnosis.

Got any advice about where they could find one ? Seems like a good idea to me.

If the worst comes to the worst you can exclude the child from your setting while listing who they need to see in your letter. Then the ball will be in their court to act.

Not sure it makes much difference what the parents do tbh.Until the chair throwing starts in the classroom thousands of kids are ignored every day. I was the proactive Mum who asked all the right questions till I was blue in the face from 18 months on. DS burned his way through school placements & it still took till he was 8 on the diagnostic front.

My LA demands diagnosis as a gatekeeping way of rationing support. Took a Tribunal to get them to allow access to Autism outreach. It is what it is.

I like star wouldn't waste my energies a second time around. Far better to go it alone. Smile and nod - go my own way, is now my preferred approach.

'im in the position and so is my LA to provide support'

Yes, I can see why this is frustrating. But at the fundamental level, this support does not meet their needs, for whatever reason. That could be inability to access due to lack of information/language or reluctance due to trust, or just a completely different cultural understanding.

The problem with so many LAs is that they develop provision to suit themselves and justify their budgets, but there is often a huge void between that and what families actually NEED or want.

You want the child to have SALT? why?
You'd quite like a dx? why?
You'd like the child to have 1:1? why?

Behavioural Consultants in the UK

HVs will vary obviously but I think mine was just following the line laid down that children are not to be referred to the Child Development Centre for suspected Autism until a certain age. A friend of mind did some FOI work trying to get at the truth of it but I don't think we will find a smoking gun memo where someone says 'hold off these ones til later because we don't want parents asking for help we can't give' - it's just become embedded into the system and I think many people do think that 'waiting and seeing' for as long as possible is a good idea - it's only when you have a child with SN that you see crazy that is ! But glad to hear things may be a little better in OP's area.

I'd like the child to have SALT :

1. Because the parents have said themselves they don't understand her. ... neither do I. She isn't speaking home language or english ... its just sounds.
2. Its my role to support her emotional well being with the lack of communication she is unable to communicate with carers and peers about her wants and needs appropriately.

I would quite like a dx just because it would make my job a hell of a lot easier but can work around it if this isnt the parents wish. It would allow me / future key carers to really work towards the best possible outcome for this child as like someone mentioned above my LA do use dx as a gateway and way of rationing support . Although very much morally agree this isnt right. But not much I can do about that.

I have to give the child 1:1 due to the dangers she presents to herself and the other children at this present time. I dont have the attitude that every child with SN Needs a 1 to 1 but with this child its relevant. 1 : 1 with this child is a case of keeping her safe. So whether I get funding or not I would still provide it.

Thanks starlight .will pass that on after half term

I assume you have also been implementing visual signs to try to progress her understanding and instruction, rules, what next, toilet needs, food, etc...does she understand what is being said to her?

A hearing assessment would make sense...maybe she is making sounds relevant to what she hears or is able to process, could even be tongue tied or have a physical difficulty and doesn't understand why people aren't understanding her???....can she mimmick sticking tongue out, side to side, up and down, lick a lolly/ice cream, copy/mimmick your sounds???

There are probably lots of smaller things like this that you could try and record ability or difficulty with....speak to speech and language and see what you could maybe be doing to help at the moment with things...maybe you can implement a structure or some guidance the parents can use at home too....for now

Well to be fair, you didn't say that in your OP. What do you want us to say?

Tbh having a diagnosis made v little difference to both my children other than to give me ammunition to fight the LA for support and help. As the parents are not ready to do that then I don't believe the diagnosis will change that much. You can do an awful lot for this child by using the strategies that often help dc with ASD anyway. If she can't communicate start using pecs with her and use pictures to help communicate the routine of the nursery. Use behaviour analysis to look at what the triggers are for her aggression and anxiety. Continue to highlight your concerns to her parents both verbally and in writing. Then step back because I honestly believe that getting too hung up on forcing the issue with these parents could sour the relationship you have with them and could also cause damage. Some people take a long time to accept there is a recognisable developmental problem with their children. You have seen it many times and this isn't your child so you don't have the same emotional response to this situation. I am a parent to two children with ASD and I took a long time to come to terms with my dd's ASD even though I knew in my heart that she had autism as I had seen it all before with ds. I would not have thanked a very well meaning professional for forcing a referral before I was ready. when I was ready I did everything required to help her. I think you may be in danger of overstepping the line through your well intentioned and in all likelihood justified concern that this child has ASD. I should also say that with my ds I followed the professionals referrals and concerns religiously through to diagnosis and other than a few sessions blowing bubbles with a salt he had numerous ISPs and no actual teaching to overcome any of his difficulties until he went to school and then it was minimal. Diagnosis does not always equal good support or any real change in prognosis.