How to deal with marriage and Sen child

[NotChained]

DD1 is coming up 7. She is currently on the neuropathways for Adhd and Autism.

We suffer from extreme meltdowns over things like socks not being on right, not being able to get dressed and needing a lot of support just to put shoes etc on.

Some days it can be amazing she can do all this herself, other days she can't do anything. We often run late due to her getting distracted and her impulsivness is terrible.

We moved schools due to moving towns, her old school picked up she had attention issues, behind on motor skills and speech. The new school I had to fight tooth and nail to get her referred onto the pathways as they say she is fine.

I've been bitten, punched, hit, kicked, spat on, shouted at, told to shut up, had my hair pulled, I have been pulled down the stairs and more. We have pets and she won't leave them alone and is always picking them up, we always keep them away but when she thinks we aren't looking.

She told me she was going to take an axe to my car and other awful things because her socks weren't right.

I've been to parenting classes, we've had an intervention team involved and things get better then get bad again. I've spoke to an autism charity. We have been to OT and peadatrician all looked at mobility issues and not Sen and discharged us.

We are looking at a 3 year wait for pathways. I feel so exhausted, my marriage is suffering. I feel so tired and drained, I've got nothing left in the tank and I don't know what else to do. I am in tears all the time. I don't see any end in sight for the extreme behaviour and how to resolve it.

I'm starting to feel I just want to leave, but on the days it's good it's like she is a different child. I just don't know what to do anymore

As part of the OT assessment were sensory needs looked at? Some people find the books The Out of Sync Child and Too loud, too bright, too fast, too tight helpful. Have you tried seamless and seamfree socks?

Have you requested an EHCNA?

Request another meeting with the SENCO. They should be providing support. For example, do they have anyone who can support emotional literacy work.

Have you had social care assessments? A carer’s assessment for you and an assessments for DD’s needs?

If it is something you would be interested in Scope has a mentoring scheme for parents of DC undergoing assessment.

Sounds as if she could be masking at school. Have you recieved conformation of referral?
Dc2 is autism with pda and similarly some days can cope with demands such as socks and shoes etc but some days not.

Yes we were initially rejected for the pathways but we were confirmed to be on it after resubmitting as of October time.

I've tried the explosive child book and although a lot of it resonated with us, due to. Impulsivity and attention we just cannot make a plan and get it to work.

I discussed behaviour at OT but no sensory needs were addressed at all. They checked her Co ordination etc and gave us strengthening exercises and discharged.

We don't have any plan in place at school because she seems to be managing. We were with the building stronger families team but got discharged last year after they had done all they could do with the school. The lady said she could see my DD was sensory seeking.

We haven't had any further involvement with anyone. I'll take a little look at scope.

Just to add she is meant to be on the ELSA programme but I've seen no improvement from that and no update from school.

It’s really hard. Try to lower your demands. Let her uniform ready the night before in a pile so she doesn’t have to think about it and she will be more in control about her picking / choosing the socks she likes.
Her Behaviour as the needs are being met usually in school as demands too high - does she have a buddy at school? Moving schools is hard.
Against the grain but if you have cash pay for adhd private to check maybe they would offer medication if that’s what route you wanted to try. Nothing if anything comes on the nhs in my experience.
Look up strategies for pda they might help you - Eliza Fricker has a book / missing the mark on insta
Good luck not easy

Yeah she has loads of friends at the school, she's been there over a year and a half now so she is settled. The only difference is her old school was really on top of things and this school isn't.

Ive thought about a private test but I'm just not sure about taking the plunge or not when she is on the pathways, it's a lot of money for a combined test and then whether it would be accepted.

The meltdowns are usually just because we have said no or because she is in a bad mood and the responses are so extreme.

Request a meeting with the SENCO. The school should be providing support.

Do you have any sensory toys/equipment for DD? Not all ICBs commission sensory OT on the NHS, but if your area does, it is worth looking at a referral. If you can’t self refer the GP or school should be able to.

You can request an EHCNA yourself. On their website, IPSEA has a model letter you can use.

You can also request social care assessments yourself. Contact has model letters you can use on their website.

You might find NVR training useful (for you not her). Yvonne Newbold has lots of resources online. We had sessions with Jack from New Leaf NVR.

I sympathise. We had this (at the same age) and it's very difficult. 4 years on things are much much better.

Our assessment (ADOS plus QBcheck) was private but to NICE guidelines and no-one's ever queried it. In fact when we finally saw the NHS they said it was good quality, no need to re-do.

What is your DD's dad doing to support? Is it all on you?

sensorysmart.co.uk/collections/seamfree-socks-bamboo?grid_list=grid-view DD likes these.

@Phineyj we are thinking of going private but getting loads of conflicting info as to whether or not it would be accepted or not. LA says no, NHS was a maybe. The private place says it would be as it follows Nice guidelines.

He is helping as much as he can but it all falls on me to fill stuff out and organise meetings, he just doesn't have the oomph to get things done like me.

Hss really good with DD and very hands on though.

Haha I also have a DH lacking in admin "oomph".

Lucky mums don't give up so easily, eh?

The LA and NHS may try all sorts of chicanery but cannot actually make a NICE-compatible assessment, not be.

Welcome to SEN parenting, where people in authority lie and mislead.

I have just answered about private assessments on your other thread, but Phineyj is right, this is a perfect example of why you shouldn’t trust what the LA tell you. They will tell you what they want you to know and their, often unlawful, version of the law/policies.

@BrumToTheRescue yes I've seen thanks for that info. I saw.

It's even worse because I work in said LA haha which is going to make it really awkward if I get a private test, go for Ehcp and have to fight it!

@Phineyj yep I have all oomph to get things sorted haha. We do equal parent, he does come to meetings etc but the forms and apps are all me.

https://autismnortheast.org.uk/assessment-costs/

This is who I was looking at as this looked to be in person.

If you can travel, have you looked at Caudwell Children for an ASD assessment. Depending on your income/capital they offer charity assessments and their assessments are well thought of.

@BrumToTheRescue i don't think we would qualify, do they offer joint as our main is ADHD with some signs of autism

They don’t do ADHD assessments.