Anyone recommend support for neurodivergent families?

[Sprookjesbos]

Hi
We are beginning the pathway for assessment for my 7 year old. He is on send register for semh and has a therapist we pay for privately. Both school and therapist are recommending assessment but tbh school Senco confuses me every time I speak to her! She is really pushing private assessment due to waiting list but I'm not sure we can afford it. Therapist recommended Right to Choose pathway for speed, but GP surgery said they hadn't heard of it. SENCo also hadn't heard of it and so I've done all the 'normal' forms which will apparently take 2 years to progress.

I just feel it's such a minefield and in the background I'm dealing with the actual behaviour. My first day on my own today (kids finally back to school, I've taken a leave day) and I've just cried on and off all morning from the overwhelm!

DH is autistic, and wonderful. Not diagnosed but the older he gets the clearer it becomes to us all. But that does present it's own challenges.

I just wondered if there was any sort of service available that I can just call up to help sort out situation out / unload the heavy contents of my brain ?

If anyone knows of such a thing please could you share as I'm sure I can't be the only one! I've googled and found one local service that run monthly teams meetings for parents so I've signed up for the next one of those which is in a couple of weeks!

Many thanks !

Google right to choose pathway in your area alongside autism. You might be able to find a provider that offers it and there will be info about referral processes.
I've just googled for Norfolk and this comes up

nwknowledgenow.nhs.uk/content/nhs-right-to-choose-neurodevelopmental-services-for-children-and-young-people-information-for-primary-care/

I've found there is no support. The best support is from other parents who understand you can vent about how terrible you kid is being but that you love them and it's not your kid that's driving you mad it's their needs in a world not built for them.

What changed our life was a private sensory processing trained OT assessment. Out of all the assessments this was the one that gave the advice we needed. Diagnosis didn't help really as technically support is based on need not diagnosis. It was the OT and SALT reports setting out needs and how to support that got us the pittance of help we get but changed our lives because I could use the advice for home and that lead to less challenging behaviour, better understanding from me so able to avoid triggers/challenges and started an understanding in my son he can express he's struggling we're he knows why or not and I will help him.

Why do school want the diagnosis? Is this because they say he needs it before he can get support/EHCP? Because you can get EHCP without diagnosis. Check the SEND board on here lots of info on how to apply for that yourself not rely on school. Also as part of that assessment you get Ed psych assessment which is incredibly helpful. Possibly SALT and OT too but my experience of those reports is when sourced by LA they try save money not help the child.

I found the paperwork for a SEND kid overwhelming. Helps to set aside a regular slot of time to do paperwork. Preferably when you don't have the kids because writing how much your child struggles and how hard that is on you is upsetting and depressing and it puts me in a mood I don't want my kid to pick up on.

Also start talking to your kid about how everyone struggles with different things. How everyone had bad days. Etc. This makes them feel better about themselves but also means when you are really struggling you can say you are having a bad day and they don't immediately think it's their fault. My boy is a fucking nightmare, drains me and drives me mad but around age 7 it clicked mummy has feelings too and when I say I'm struggling he gives me a hug and accepts today we just gonna stay home or whatever. It's really helped me keep loving him to see he cares so much in return just doesn't occur to him unless I tell him I need an easy day.

Also make sure you are getting enough sleep. It's likely you are using your evening to get stuff done you can't do with child about. Even simple stuff like tidying up can be a challenge with autistic kids, where with NT kids you can do it while they are awake. Paperwork is another thing that gets done in the evening then you are stressed and sleep shit. Work with your partner so you get down time and enough sleep. It's easier to cope when not exhausted!

Obviously always fight for all the help you can get. I still fight. But I've mentally accepted there isn't help and it's me at home that needs to support and make the changes. It's less soul destroying then when you don't get help. And if you educate yourself on how to parent your child individual needs life really does get easier for you and him

Thanks! I have done this and I have found a provider. Apparently though, the GP also needs to support this pathway and not all GPs will. My understanding is that some GPs just don't do RTC and what do you do if not? I've got an appointment with the GP in 2 weeks to discuss this.

I've done the Snap 4 checklist on the providers website and our son scores the highest score on the ADHD scale and meets some of the criteria for ASD (which is interesting because until our therapist said she thinks it's likely he has ADHD I was just thinking autism)

So appreciate you taking the time to write this lengthy reply, there was so much in it that was helpful.

To be honest I'm not sure why school are pushing for diagnosis. He would not get an EHCP as he 'copes' in school. He is working at GD across the board but hates it and often needs to be physically handed through the classroom door. Until we started working with the private psychotherapist he would meltdown on the way on and out of school every day.

I suspect that the school's sudden push is due to me having a bit of a meltdown of my own in September when he just flat refused to return to school. I ended up going in without him and telling them I just couldn't get him out of the footwell of my car. This was after weeks of bed wetting and general anxiety about the summer holidays finishing. I had spent all of reception and y1 telling them my concerns and getting fobbed off with "he's fine here" and feeling like it was just our parenting. But he's not our only child and in my heart I knew he was different and have done since he was 3. I think they finally sat up and noticed in September especially when his new teacher put him on the send register and said he couldn't sustain focus and she needed an adult with him to get him to produce any writing as he would cry and hyperventilate when asked to write anything down.

He's settled into y2 now and things are much better. But I wonder if school feel they dropped the ball on him a bit.

You're right that it's the behaviour that needs addressing and actually the therapist has really helped with the emotional regulation - to the extent that the things I initially put on the referral form in September aren't so relevant anymore but maybe that doesn't matter.

I will look into OT. His sensory needs aren't a massive issue. He is sensitive to noise and feelings of clothes etc but only when already stressed. It's like he can cope with the input unless he's already coping with something else. So at parties etc if something happens that upsets him he will then cover his ears and say it's too loud, when before that was fine (and honestly he's the main contributor of noise in most rooms!)

But yeah it's really hard. I do need to look after myself. I have just gone down to 4 days at work because I also work with children and I just desperately needed processing time.

Amazing how validating it was to hear you describe your DS as a fucking nightmare. I love my DS to pieces and feel I spend so much time defending him to other people, explaining his behaviour, reminding people (including DH and DD) that he struggles and his meltdowns are harder for him than us etc etc but at the end of the day, yeah, he is a fucking nightmare 😂 and he absolutely drains me.

I feel like 2024 everything clicked into place though and we went from just feeling completely at sea to beginning to unpack him. So I'm determined to carry on on that trajectory. Thanks so much for your advice!

I think from what the teacher has said about him needing an adult to produce work and getting that distressed added to the school refusal you should go for an EHCP. School would then get the funding to provide interventions and support his work. Possibly short stinks of a 1:1 for key subjects.

Re sensory. Think of it like he's always bother by noise and clothes and it's always taking away some of his tolerance. He manages it most of the time except your party example. However he would be more comfortable at school and able to focus if you removed as much sensory stress regardless of if he's vocalising it's bothering him. Google sensory diets and window of tolerance. The website griffin OT has some not expensive courses that I found amazingly helpful too. My boy struggles with clothes when stressed and there are things I can do with him to help him manage it. It's also in his EHCP he can wear clothes suitable to him not be forced into the stiff school trousers etc. He gets sensory breaks and sensory diet, quiet learning environment. All these things your kid could benefit from from your description of him.

You should also look into alternative provision. Some kids who struggle with school can go to something like animal therapy or forest school half a day or half the week. My son goes to a forest school that is teaching him maths and English while there. If you argue with the school refusal as your evidence you could prove need if you feel this could help him. Join some EHCP Facebook groups and the group 'not fine in school' will be very good to look at some posts. These groups are good emotional support too as as you noticed it does feel better hearing someone else be blunt about how hard it is and know you yourself can be as blunt and not be judged like a parent of a less challenging child would react.

I keep thinking I should retrain and help families with this stuff. I always have so much to say on these threads and in the fb groups. I've been through the tribunal to get EHCP. I have an intelligent child without severe multiple learning difficulties so doesn't qualify for SEND school (in my area some LAs better than others) but can't cope in mainstream. From what I read it's this type of autistic kid who ends up with no school place and no education when they breakdown and can't cope anymore. And the parents of these kids just don't know what's happening or what to do. I'm autistic myself and it's become a special interest I think haha. So sorry my comments so long again.

To give you hope. I was a hellish child. Seriously struggling with clothes and noise and people too close. School refusal, complete mental breakdown self harm suicide attempts. Was an utter mess into my 20s because my parents never tried to support me they forced me to conform. I sorted it out enough to cope with life once I had an adult understanding of my needs and the world. now I structure my life around my own individual needs. Before I became carer for my son I worked full time had a mortgage and friends and was functional. It helps me to remember I manage life after where I came from and my boy can do that too. And Ive had support from parents who's kids are older and they often say the same. It takes an awful lot from a parent to get he kid to adulthood and able to manage but it is done often and with great success. support needs at school isn't a life sentence. The more support the earlier the better outcomes for the child as an adult. Just knowing you understand and care for him amd he can be honest amd not mask will be the best help for him- amd he's doing that already because that's what the meltdowns before and after school is. Look up the coke bottle effect. He feels safe with you