To not pursue any further assessment

[Vengabusiscoming2019]

DD is five. There has always been concerns about her developmentally with 5050 on ASD and a wait and see needed. This has been ongoing since she was 22 months.

I'm exhausted by it all. Yes I have major concerns but she is happy at school. I don't see what benefit any further assessments may have. Has anyone who has had concerns specifically chosen not to pursue investigating them?

Can you ask the school if they can give your DD a 'brain break' every afternoon? This would involve finding out what your DD would like to do (playing with Lego, drawing/colouring, having a walk round the playground/whatever) and a TA taking her for 20 mins to do this somewhere quiet. This lets the child decompress a bit while still in school, and good TA can also take it as a chance to discuss how it feels ('Gosh, wasn't it noisy in class this afternoon? How does that noise make you feel?' 'All nasty inside!' 'Yes, I can understand that. Isn't it lovely and quiet here, just listen a moment.... breathe in that quiet...and out. Now, is it the farmyard game today or your scrapbook? Feeling a bit more chill? Sometimes all you need to do is just find a quiet space...')

I've known this really improve after-school behaviour, though I was very sceptical at first.

Grumpy, that's a strategy that we use for many of our children. We manage it by using Now and Next terminology and also have personalised visual timetables so the child can see what needs to be done Now and what's coming Next, which would be the choices you've described. For some children, the time needs to be chunked into no more than 10 minute blocks, so it's quite intensive in terms of staffing, but we also include activities that can be done independently for Next.

OP, this strategy also works very well at home. E.g. At pick up time 'Now we're going to walk home, Next we will play with your toys.' Keep up with that mantra even if she's losing control, don't try to change the words, don't tell her if she's good she can play/ if she doesn't walk nicely she'll go to her room.
Eventually we introduce 'Then'
'Now we will walk home, next we will play with your toys, then we will have tea.'

I know it must be hard but please do stick with it. Irrespective of how things should work the truth is it makes a huge difference to the amount of support a child can get in school. Unfortunately, the way things stand as a parent of a child with SEN you do have to keep fighting to get what the child needs. It shouldn't be that way but it is.

Are there any local charities/support groups near you that you could turn to for some support? You really do need it and the help and advice of other people who have had to deal with the same systems and institutions would be invaluable.

@Soontobe60 My daughter's issues started before younger one was born. He's always been the one who I haven't been able to sit and play with or chat away with. He doesn't get the experiences because DD can't handle them. Most of his life has been spent purely trying to prevent him being targeted. Dd gets 90% of my attention unfortuantly.

My Ds1 has a diagnosis, which was disputed. He's had zero support before or after. So it was all pointless.

@Oblomov19 That's my fear too that it won't actually make a difference

But. For others, for OP, I would always recommend continuing.

venga ds was diagnosed two months ago. There has been zero support unfortunately. The paediatrician sat there when I asked for help and said there was nothing she could do. I'm trying to get him mental health support at the moment, another fight. We were given a handout with local charities on and that was it. Not much use having the email address of a special needs football team when your child wishes they weren't alive anymore.

That being said we do welcome the diagnosis and I'm glad we pushed the school to refer him. I think you should try and push forward, it's hard though, our issues with Ds are slightly different to yours but I do understand how overwhelming and crap it can all feel at times. 💐

So much depends on where you live though. The school don’t see anything worrying in my daughter, and I can’t get a referral without a letter from the school. But then, I spoke with one woman whose son was over a year behind developmentally, and had toiletting issues, and she said that she also struggled to get a referral. So many places just don’t want to refer children, especially if there are no behavioural problems. My daughter is very well behaved, but extremely emotionally volatile and anxious. The school has never cared, because she doesn’t cause them any problems. However, the school are good at focusing on needs - probably because it is so hard to get a referral, let alone a diagnosis, here.

If a school cares, then they would have put everything into place, without a diagnosis, wouldn't they?
Sad. But true.

If a school cares, then they would have put everything into place, without a diagnosis, wouldn't they?
Sad. But true.

And complete bollocks. Schools don’t have the money to put all the support pupils need in place if they don’t have a diagnosis. In fact, they often don’t have the money if there is a diagnosis.

A 1:1 TA if you think about tax / national insurance contributions too is going to cost a school about £25k a year. If schools can’t buy glue sticks they cannot get TA support for kids to have time out / reflection time without a diagnosis. It’s not about caring or otherwise; it’s about the practicality of it.

Continue OP. School funding cuts mean that they can’t afford to put everything in place without funding. There’s no guarantee but it’s worth trying.

I have given my head a wobble and deciding that when her next pead appointment comes around that I'm in the position to make the absolute most of it.

What sort of stuff is useful to take?

Schools should not be suppressing helping parents to diagnose children's needs because of funding. The school could be transparent with the parent and help the parent get what they need from the council. Support the parent in other ways even if the parent can buy in basic equipment for their child.
Suppressing the truth however is abominable.

Ds is much older but I took a four page printout of everything I could possibly remember from when he was born onwards that may indicate that he had ASD. The paediatrician didn't read it but said she would after the appointment. She had already decided to assess anyway though.

Have the school had any contact with the paediatrician? It was Ds's school that did the initial referral but whilst we were waiting for his assessment they wrote again because we were so concerned. A letter from her school may help your cause too. Ds seems happy at school but he is actually anything but.

I would go as prepared as you can be. Have they ever actually done an assessment for autism? Hopefully if not they will agree to it this time.

Good luck, I think you are definitely doing the right thing.

In fact, they often don’t have the money if there is a diagnosis.
But if the diagnosis comes with 1-2-1 support, my understanding is that the school gets the necessary cash which it then spends on exactly that.

And Soontobe60, yes, now and next is very helpful. Some children get the concept very quickly.

Keep going, please. DD2 finally got her diagnosis at 11, almost 8 years after I first mentioned ASD. It's been a long road, but it's essential that people realise there is a reason why she responds to things as she does.

Grumpy a diagnosis won't come with 1- 2 - 1 support although it may recommend it. An EHCP would have to be applied for by the parent or school to secure the funding to pay for that kind of TA support. EHCPs take at least 20 weeks if not longer. An autism diagnosis can take years to get too. Nothing in the world of SEN is quick or easy.

Venga - you asked what sorts of things to take to the next Paeds appt.
I'd suggest starting a diary of the incidents you have had with your DD like the problems you had the other day whilst collecting her from school. What happens at home and how this impacts on you as a family and how you have had to restrict the thing you do as a family because she is unable to cope.
As families coping every day we tend to normalise the routine we have had to adopt to be able to get through the day with our children so it's good to actually write it all down.

Yes, sorry, Punx, I should have been clearer. But you won't get an EHCP without a diagnosis...

You 100% can get an ehcp without a diagnosis

Video her doing some obsessive behaviours , stimming, the way she plays etc to show rather than tell.
Write down how she responds to language eg picking up on key words not meaning of whole sentence, taking something literally.

Describe the cause of the melt downs eg too many people , lights , brake in routine.

Don't just describe the reaction describe the cause.

I have videos of her stimming. She spins constantly and will also constantly climb on the little table to jump off.

I have the video of the very start of a meltdown it obviously physically can't record a full meltdown. I do have some audio of a meltdown but again priority tends to be safety than getting the recording set up.

I have some pictures of how she plays although she hasn't actually played with a toy in months possibly years. She just wants to draw and do crafty stuff.

I have also written a more detailed account of how meltdowns start, escalate etc.

I do have a diary I have written but it quite probably isn't in enough detail.

Buscake, fair enough, I checked, you're right. It's just that I've never known a child get an EHCP without some sort of a diagnosis. Maybe that's just our LA, notoriously and historically tight about education of any sort.