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 .

maybe they believe that school is school, it's where you learn, home is home and that's their only role...they just send their child in and it's up to you to take steps within it...not for them to interfer with that...maybe?

maybe you could offer to pick them up and take them to the appointment...make sure they get there, etc

can't any of the assessments be done within the home too...if they are reluctant to attend initially...maybe further along the road from this first visiting assessment result, they would see the need to keep going with things for their childs sake

I had parents of 3yr old identical twin boys who were both non-verbal ASD. He was a British Pakistani and she was from Pakistan. She didn't speak English. We met on the Hanen More than words course and then again on the NAS Early Birds. They pushed for a dx through the SALT as they quite rightly felt that their boys were different and developmentally behind. They had seen a SALT and she basically told them that in her opinion both boys had ASD. The parents were relieved that it wasn't their parenting that had caused this. They are both at a SS for ASD now.

Maybe Fluff you just need to be blunt and say the in your experience, you feel their DC has ASD and though it is just an opinion you feel that her xyz behaviours would suggest this. Tell them that they need to take this further to get a dx and then for the right support to be put in place to help them. Map it out on paper for them. Speak to SENDIS to see what courses are available for them to attend, and then you just have to leave it up to them.

i had met parents of 3yr old tsk tsk!!

don't you have any colleagues you can bounce this off? I wouldn't have thought it was that unusual for parents to want their child to communicate better but to shy away from any possible ASD/LD diagnosis.

" They are the sort of book smart people who dont have any logic ..."

I picked up on this.

You clearly feel that they are missing your point, but that doesn't mean they are lacking logic.

What is stopping you from asking them what is preventing then from accessing the next steps? Why is diagnosis stopping you from implementing the strategies? Many many children need significant help and don't have diagnosis.My DD, for example, is at special school without diagnosis.

I think it's commendable and refreshing that you are trying to help the family in this situation but I'm still not clear what it is you need advice about - as lougle says getting a dx is no magic gateway in itself, the priority is to spot developmental delay and to get additional help for the child irrespective of whether it is ASD or GDD or whatever. As I said, it's great that you are the one trying to raise the issue as usually the parents find that the professionals are the 'difficult to engage' ones as they pursue them relentlessly with a child with clear and obvious developmental delays

I just wanted to gauge a few different perspectives really , particularly from parents who may have been in a similar situation to see if I've missed something.

They have transport , understand what will happen but yes I think if I will offer to take them to salt if it continues.

The child is having an impact on the other children , some of the behaviours she displays mean I am having to one - to - one , for the benefit of ALL the children in the setting ... including herself. This isn't free to the setting and once she goes to school unless a dx is in place it will all disappear.

The reason I am focusing on salt and not a Dr is for mainly two reasons 1) The parents acknowledge that she is neither fluent in home language or english and that a lot of the sounds she makes are jargon and babble. and 2) I feel SALT are more likely to pick up on the issues that are present , parents are willing to admit there are issues and then back track with excuses , which frankly don't hold up. In my opinion the salt therapists are more likely to pick up on this and beforehand and I know I can ring and give a heads up on what I have observed etc. I'm not a novice and I have suggested parents go to GP's previously and GP'S have completely missed / been talked out of anything ... including one child who ended up being dx with mild cp. I know the Dr's have some training but IMO not enough and like I have mentioned before I can't make a direct referral to Paed.

Unless this child gets tailored support she will be missing out on the ability to communicate with her peers and adults , without one to one support she will be unable to access the curriculum both with me and at school. If I send her somewhere for extra support not only will the child received tailored support but so will the parents therefore improving the outcomes for this child , their sibling and the family.

Obviously I only know what it's like im my borough at the moment but the only way for this obviously needed support is to go for further assessment and dx. Mostly because of money. Im not so focused on just getting a dx or anything else but more furthur assessment and then I can fight for some funding so the child can be supported properly. #

I'm doing as much as I can but I've put as much in place as I can and I know this needs to go further than just myself. For everyones sakes. I'm hoping half term might prove a turning corner...... They might even take her to SALT this week...will keep you all updated

I can understand them not telling their DS until they felt it was the appropriate time for him to understand his differences, but not from the people who can deliver the right support. Bizarre.

We didn't tell DS until he was 11. We didn't think he would have coped with it beforehand. He's just been dx with dyslexia and is now broadcasting it to the world at large! Oh well....

FluffandStuff, I can see how difficult this is for you and appreciate you trying so hard to think things through for this family and get it right.

However, I also agree with some of the 'harsher' posts here.

The law states that provision should be based on NEED, not diagnosis, so actually a diagnosis is irrelevant. IF the child has ASD, then research evidence suggests that SALT actually doesn't do anything (not saying it couldn't, just that it doesn't). 1:1 tends to be provided on the basis of the school's need rather than the child's anyway, so she'll get that support as soon as the teacher gets pissed off.

I have been though the system with a child with autism. I have a 3rd child who is at risk of having autism. I will not be going through the system with him if he has. I will stay firmly in denial and work with him myself. He will not go to SALT and I will not apply for a statement. I believe that would be in his best interests.

A diagnosis is not the key for provision, not should it be. A good proportion of the children at my DD1's special school have no diagnosis whatsoever. They have the catch all label of GDD.

Perhaps they worry that they will be blamed for having a dual language household. Perhaps they worry that SALTwill encourage them to only speak English to her.

Have you made it clear that in the vast majority of cases SALT isn't a permanent thing but that MOST children use it for a few months to a couple of years just to get a "Leg up". Children also use braces for their teeth for a couple of years not for life. Lots of kids need a bit of extra support in one way or another between 0 & 18.

Baby steps.

The idea of having to raise a potentially seriously disabled child in a country and culture that is not your own is a very, very frightening thing to contemplate no matter how highly educated you are. It's human instinct to want to hug the child close to your chest and just pray - the parents could be frozen in fear though putting on a good "front" to you for fear of seeming incompetent.

The UK system generally seems terribly judgemental & interfering with all it's emphasis on healthy eating and early learning goals to outsiders. Formal schooling doesn't even start till 7 in many nations.

I'm an early years setting , the support I provide comes out of our pocket as a charity , Im not a maintained setting. I dont have a budget to support this child I have to apply for one and without further assessment they wont give out the money. I dont care so much about the dx ,if thats suitable or not but more about further assessment because even if they go to see someone else and they mark an issue I can begin the ball rolling even if the parents dont want to take it further.

Im not forcing my own opinion but at the end of the day they are telling me there's something wrong , its my duty to listen to that and act upon it . As well as observing this within the setting . I dont know better than the Dr ...Have I said that .. no ? But I dont know where in the country you are but here they are shit and have actually ignored parents concerns about multiple issues which have in the long run turned out to be fact.

I work with the school that she will be going to and they wont be able to provide one to one without some kind of further assessment ...whoever it be by.Surely you would agree that having support systems in place now that can be carried onto school would allow the child to make more progress then her going to school and them needing another year to put stuff in place.

Im well within my job role to be suggesting this to the family , I would be worried about any setting that didnt act upon concerns / provide a child with the support that they need. The ONLY WAY I can support her is to signpost to someone else and get some one with a specialist title involved. The LA won't become aware of this child until they attend somewhere else . I know head of LDD dept. and I even double checked my avenues and she said all I can do is get them / get someone to come and see her.

I am all for parents parenting how they wish but I dont feel they are in the position to make an informed enough decision. They just cant see the bigger picture for this child....yet though it may come with time. I've not mentioned to them the whole dx rather than just acting on concerns they have and signposting them in the right place...but then they dont do it.

The salt thing , whether it helps her or not , they can send her for an assessment that I cant do a referral for.
Surely you would all do anything you could to help your child regardless of what their needs are or are not ?

I dont know better than the parents , nor do I claim to , BUT they keep telling me they think something is wrong ... and I agree with them, but I cant help with their worries within my service alone

have you tried explaining honestly that it's an unfortunate quirk of your local system that without salt or paed assessment it will be much harder to get this child support for starting school if they need it.