OT appointment but nobody believes me

[NiceCupOfTeaAndASitDown]

I've posted a few times about DS who is 3.8 and shows signs of lots of sensory issues as well as symptoms of the triad of impairments and some co-ordination issues (which may well be sensory)

he was seen at a multidisciplinary assessment a couple of months back by an eye specialist, SALT, physiotherapist and pediatrician. He 'performed' beautifully, masked all/any issues we have (I posted shortly afterwards as I was told it was most unusual to 'behave' in public and fall apart at home) they all loved him - report makes me out to be a paranoid precious mother but it was agreed that a specialist HV would visit

she came this week to see me and everything I told her she replied "that sounds like normal behaviour" but she agreed to refer to an OT as I felt this was what was missing at the assessment (the pediatrician glanced at my notes and said "all children are a bit frightened of loud noises and brushed off anything I mentioned to do with sensory processing)

so the OT called me yesterday to make an appointment and already she's saying "the HV thinks DS is behaving quite normally for his age" - I pointed out that 1) she hasn't actually met him and 2) he presents very differently in public to what we see anyway. I just feel like everyone has made up their minds that he's fine/we're just shit parents/lying before we've got anywhere..nobody is actually reading what I've written (a page on each triad, a page of sensory issues etc) or listening to what I'm saying. The plan is to send the HV a load of videos of DS's meltdowns, hyperactivity, lining up toys, making constant noise, what I think is sensory seeking such as trashing a room/slamming doors because I just don't think she's getting It. she says he's eating and sleeping well for his age so my point is why is he behaving in the way he does? nobody seems to be able to answer that but we've been on a parenting course, we do all the usual parenting stuff and it doesn't work. He has huge demand avoidance issues and I believe his anxiety due to the sensory stuff builds throughout his time at nursery and he explodes at home. .but apparently that just doesn't happen

so I suppose my questions are: was the diagnostic process this bloody difficult for anyone else?

is there anything I should be asking the OT (like how to tactfully ask what her experience is with sensory issues because nobody else seems to have a clue what I'm talking about) - I'm assuming she should have a sensory profile for us to fill in???

realistically am I going to be made to feel like our issues with DS are my fault/imagination until he finally cracks and starts acting out at school? my feeling is that he's on the autistic spectrum, but I think he presents more like girls tend to - we go through social niceties almost every day and he asks me what certain gestures and sounds mean and he fits them into how he interacts with others kind of through repetition rather than actual understanding. ..does any of this make sense?

my belief is that he needs a sensory diet to help with the prevention of overload but if the OT doesn't see/listen to the points we make where do we go from there?

We already get DLA and I want to look into the statementing process so I'm going to discuss with nursery what things I feel might be affecting him and hope they will try a few things there to see if it effects home life..to be honest I feel at the moment that despite the fact he's 'fine' once there they're the only people who actually believe me on all of this

It sounds really tough. Yes the diagnostic process was awful for us too - you're not alone. I have a dd who can seem 'fine' in public for short periods despite really struggling with social and sensory stuff etc. It's horribly frustrating when you Know something's up and you're just trying to get them appropriate help. And it's a horrible, lonely roadwhen no one listens, but blames you. I think it's a good idea to show them video - I don't think they believed us re meltdowns, lining up, hyper behaviour etc until they actually saw it on the bits of video I'd managed to get. Keep going we eventually got there by not giving up and by showing how she is at home.

Thanks both. soupy how long did it take you to get taken seriously? Does your DD have similar issues to the ones I describe? its so hard to get video evidence, I've plenty of the actual meltdowns (although often he's screaming "don't take a picture of me" or kicking the phone out of my hand) but it's the pre - meltdown behaviour I find the hardest; He seems to be using every last scrap of energy being impossible/agressive/destructive etc almost trying to trigger it and it all happens so fast/at a busy or stressful time or is so dangerous I can't catch it on film.

*polter - I've heard there's stuff in the out - of - sync book that can help? not had a chance to read much it's always so hectic here I have worked in a few ideas from 'understanding your child's sensory signals' on occasion and they do seem to help but I feel so clueless on the whole. I think my big worry is that we design/implement our own sensory diet and it works to the extent that people believe us even less and we get even less help.. I'm so worked up about choosing a school already..

am I likely to get him assessed for a statement when the professionals are saying there's nothing wrong?

what should I be telling/asking the OT? I feel like this is a big chance and I don't want to blow it

We waited months for an OT appointment, filled in a sensory profile for OT and dd had one assessment, where definite differences in sensory processing were found, but then she was discharged, and OT recommendations seemed to be largely ignored by school. I've found reading up on sensory issues has helped more plus advice from here, but think we'll go for a more in depth private OT assessment at some point to get more tailored advice. Finally got ASD diagnosis 18 months after first referral. Some things sound similar to your DS eg meltdowns, but social understanding and friendship difficulties are also a big issues plus rigid thinking and behaviour and very volatile emotions! Other things too like sleep and eating issues.

Rubbish, isn't it.
Tbh, you'll be the expert in no time flat, and most probably will be doing pretty much all of the 'intervention' stuff yourself. So I wouldn't worry overmuch about whether the professionals believe you or not. found this out the hard way

Could you just set two or three cameras covering the main areas of your home and have them running all the time so that you know you'll catch a good proportion of the behaviour (you can edit the footage down afterwards)? I think you can hire the equipment for a month or so to help keep the cost down.

Hi op,
Yes I am in the same situation as you been doing this dx circle for 3 years now! Got cahms again tom I'm really nervous.
I just wanted to let you know you are not alone, your ds sounds a lot like mine.
We will both get there in the end, stay strong and keep fighting.

We have other issues too, but have been signed off by SALT as they think nursery can deal with the social stuff (despite not contacting them or giving us any idea of what to ask them)

I wonder if CAMHs is worth looking into? I'm so dedicated to fighting for my boy but all of this negativity is starting to make me doubt what I'm seeing even though DH is with me and it's just so obvious to us that something is amiss

tortoise that sounds like a very good idea, how I'd whittle it down though I really don't know!

mum of 6 thank you for your kind words

mrsdevere through reading posts on here and the celebra guide I discovered that DLA is needs based not based on diagnosis, at the time of applying we were due an assessment but hadn't seen anyone yet. I didn't ask anyone to provide evidence or anything like that I simply explained what we do each day to manage DS's needs, I admit I went into great detail. that's interesting about statements, I will check the LA website thank you

Argh just lost long post to you - so now re writing in point form

• I was in your position too & my advice is go with your gut feeling
• OT took ages for us too & didn't deliver much
• better instead and only four pounds: look up sensory profile toolkit West Midlands - you can make your own sensory diet
• good nursery are on board : they see him often and have a peer group to compare to & are the ones that can implement plan like sensory diet

Thanks system. I actually have that book but not sure what to do with it now it's completed! is it a case of finding techniques or exercises to combat the problems I've identified? I don't know where to look!

I'm wondering if it's worth taking it to the OT but given my previous experience (ped took one look at my list, told me most DC would tick lots of boxes and then pushed it to one side) I think I'm likely to be asked why I have a book about autism!