Struggling to accept this is my life

[Manc89]

My DD is on the waiting list to be assessed for both Autism and ADHD, she also has dyslexia. This past few months things have massively spiralled. I feel like she has had some sort of breakdown and things are absolutely awful. The meltdowns are terrible, she has become so angry and unpredictable. The meltdowns are now happening several times every day, she doesn't sleep at night and absolutely screams the place down (sometimes for hours!)keeping all of the family awake. I am struggling to cope and feel like I may be depressed 😔. I have an absolutely amazing DH who does so much to support us. I'm terrified that he is on route for a breakdown. He works so hard and then comes home every night to help me with DD. I know that DD can't help this and we really are trying our best, we honestly just don't know how to. I feel whilst DD is waiting to be assessed we are just in limbo. All our lives are ruled by DD and her meltdowns and we just cannot cope. I absolutely adore my DD and would do anything that I could to help her or to try and make her happy. I feel like I'm constantly looking at other families and feeling so envious of what a normal happy life they have. DH and I barely have a conversation let alone marriage anymore. How do other parents cope?

How old is she? This sounds very hard for you.

Some parents find counselling helps.

A lot of support is based on needs rather than diagnosis. With that in mind, what support is DD receiving? Does she take anything to help with sleep? What is school doing? Does she have an EHCP? Do you claim DLA for DD? And have you have social care assessments - a carer’s assessment for DD and an assessment of DD’s needs? If things have significantly deteriorated have you been back to the GP? Has DD had an OT assessment? Don’t feel you have to answer all the questions but they are things to think about.

Some find the books The Explosive Child and the Out of Sync Child helpful. Others find PDA strategies &/or non-violent resistance courses/resources useful.

Thankyou for replies, DD is 9. In all honesty we just feel completely lost in all of this. School is absolutely useless and the communication is terrible. DD is attending some nurture groups at school but that is all school are doing. I have huge concerns regarding high schools. I have heard about EHCP, how do I go about this? DD hugely masks in school so I'm scared they will say she isn't entitled. We don't claim DLA, I was under the impression that could only be applied for after diagnosis? GP is pretty useless to be honest. We requested OT assessment but they haven't got back to us. DD was prescribed some antihistamines to help with sleep, but I just don't feel this is a long term solution. At night time she comes up with every problem under the sun. She refuses to get into the shower/pjs/bed. She needs a drink, she has a headache, she wants mummy/Daddy, her legs hurts, she is too cold/hot. This is all being hysterically screamed, no matter what we do she is never happy, she just moves onto the next problem. We have to sit with her to put her to bed, which can somtimes take hours. Then when she wakes after a few hours the cycle then starts again. We have to go through and sleep in her room with her, and even then she will continually wake us up. She even comes into our bedroom and refuses to leave, she will lay on top of us and refuse to get off. She will scream and kick doors during the night, its awful. Its like she goes into this zone and cant get out of it, she will be sobbing how she cant calm down. I'm attending all of the workshops that I can as I feel pretty clueless about everything and just want to be able to understand and support Dd as much as I can. We would happily attent sound counselling sessions if they were available. Thankyou for the book recommendations, I will definitely have a look.

The first part of the EHCP process is to request an EHCNA. You can do this yourself. On their website, IPSEA has a model letter you can use. You can get EHCPs for DC who mask. Don’t be put off if the LA refuses. Appeal. The vast majority of appeals are upheld.

As well as requesting an EHCNA, request a meeting with the school’s SENCO. They should be providing more support.

DLA is based on needs, not diagnosis. You can apply for DLA now. Cerebra has a guide that is helpful when completing the form.

Chase OT.

Some do take antihistamines to aid sleep long term. I would try them. If after trying them they don’t help or don’t help enough, go back to whoever prescribed them and ask for something else/a referral to a sleep clinic. The laying on top of you may well be a sensory need.

Make an app with the SENCO at school. Write down everything she does at home and what you’ve tried.
Can you try a different gp?

What happens when she comes home from school?

I wrote that ages before it posted! Agree with the post above mine, you can get the ball rolling.

We had a very similar experience to you. You have my utmost sympathy.

I think 9 is a very hard age. Our DD was probably most challenging between 7 and 9.

You can join the EHCP support thread on here. I'll send a link in a moment. Our DD also masks at school.

As well as all @BrightYellowTrain's helpful advice, you might like to look up NVR. We found it the most useful intervention and we tried everything! We used New Leaf NVR, however, Yvonne Newbold has resources online.

A book I found very useful is 10 Days to a Less Defiant Child (Bernstein).

EHCP support thread no. 4 - www.mumsnet.com/talk/special_educational_needs/5197351-ehcp-support-thread-no-4

DD had a kind of breakdown in 2020. Lockdown and online school sent her over the edge.

She's doing well now!

This isn't your life for ever, OP.

its hard. Kind of enjoy your life before everything else stops and potentially your child can’t / unable / no school to go to and then you could end up house bound looking after your child 100% 24/7 with no support (that’s me 16 months later)

defo try for an ehcp

unfortunately private people is the way forward if you have cash - all the standard professions are linked to LA and they try to reduce costs

biovea for meds for sleep

look up n fisher / webinars she is very good

Thankyou so much for all of your replies, it really has made me feel better. I have a meeting with school senco next week, so at least I can now go armed with the right questions to ask. DD is absolutely wild when she comes home from school. She is practically bouncing off the walls. We have had to leave homework for now as it was just causing such an awful time for us all. School have said that it's not a big deal and they can help her complete it in school. I will go back to Dr's and ask again about OT and maybe try the antihistamines again. My head is just constantly battered at the moment, it's very difficult because I also have 5 year old DD who is also waiting to be assessed for Autism.

DD is absolutely wild when she comes home from school. She is practically bouncing off the walls.

This is the coke bottle effect and signifies unmet needs at school. If school was easier, home life would improve too. This is not your fault. Don’t let anyone make you think it is.

When you say the school has said they will help DD complete homework at school, they aren’t removing break time or lunchtime, are they? That would be counterproductive.

In some areas, you can self refer to OT, so if a referral wasn’t already made to them, you may be able to refer DD yourself. If a referral has previously been made, chase OT directly. You can probably find a phone number with a bit of googling.

Sympathies - my DS has huge issues/meltdowns at bedtimes, and also can get in such a state that he can't calm down. There are lots of breathing exercises which are helpful (but need practicing when they are calm), but one piece of advice i read recently which resonated was ' you can't tell someone to calm down/breathe when their house is burning down'. May sound odd, but for the child, in that moment, they feel like the house is on fire and there is something to panic about (even if it is in no way obvious to us!), so it is more of a 'fire-fighting' exercise, and giving them reassurance before you can move on. I say this knowing how incredibly difficult it is to do! For us, i also ususally know when DS is going to struggle/kick-off, and it is a matter of trying really hard not to pressure him in any way (ignoring him almost), but let him sit quietly until he is able to respond without a meltdown (even if this is well past his bedtime!). Again, this is hard to implement.

Have a look for the NHS mental health support services that are available in your area (for us it is CAMHS) and get referred (you can self-refer where i am) - although there will be a waiting list. Agree with others - hassle the school and make sure they are doing everything they can (they don't need any formal diagnosis, and can do a lot to make life easier) - opportunities for time out, getting outside for a walk, adjusting the timetable, fidgets etc. Have you considered part-time school timetables or flexi-schooling (if this would work for you with work)? The behaviours at home may be a release from all the stress of school (as I'm sure you've considered)?

Personally, I wouldn’t go down the flexi-schooling route even if the school would agree (and many won’t). By flexi-schooling, parents take on the responsibility for education during that time. Parents find it easier, although not easy, to get support when the school/LA remain responsible. And I wouldn’t go down the part-time timetables route unless alternative provision was going to be put in place for the rest of the time to ensure DD still receives a suitable, full-time education.

My DC had episodes like this and as others have said it was unmet needs at school. You can do some evidence gathering yourself. I’ll post the instructions in a moment. This should help in the short term so you can ask school for help with the biggest items and then also as evidence for your EHC Request. Good luck

This is from an email I sent to a parent local to me and it refers to his daughter but it is easiest for me to cut and paste for you as it is:

a few things I found useful when it was all going hideously wrong - and which helped get things back on track:

Useful film - what to do when school is going wrong:

Information gathering.
Not recommended by schools often enough.
People leap to conclusions and forget to ask the young person what is going on.
Instead use these resources to record what is happening so you can work with the school on solutions.

Firstly get a map of the school - floor plan of all levels and get them to colour the spaces in red, amber green for how they feel about the different parts of the school/classrooms/corridors etc.

Secondly use the All About School word document. (Dm me your email address and I can send the docs)
SIt down at a calm, quiet time and set aside about an hour.
Aim to finish the questions in one single sitting.
Record accurate quotes from the young person and also add notes about non verbal signals alongside the scores. Eg if they run out of the room or hide under the table instead of discussing something that is a pretty strong indicator that there are issues!
Ask about very high or very low scores by just repeating the last 3 words of what they said with as little emotion as you can manage.
By the time you have finished this you will have a really good picture of what is going well and what is going wrong. Ideally you will identify some potential safe spaces in the school which can be used to help.

Third start keeping a diary of anxiety or distress every day.
Use the attached Detective template which makes it colour coded and easy to see.
Add notes of other behaviours/illustration of problems.
You can then cross refer to their timetable to see if there is any correlation.
Again recording distress at home is evidence of unmet need and useful to give everyone involved an easy picture reference.
Also you can see when/if things get better which is a relief!

Fourth - as suggested before reduce as many demands as possible. Even if it seems a bit babyish. It gives them more energy left to cope with everything else