Can’t do this anymore. I need a handhold

[Feelhelpless93673]

My child is breaking me.
She is awaiting an autism or adhd diagnosis. I don’t even know at this point what is going on with her.
She is relentless, beyond defiant, she physically abuses me and everyone else in the house every single day. She screams in my face, refuses to do anything, lashes out. You name it, we have tried it.
I just can’t do it anymore. I am so depressed, I am a shell of my former self, I’ve lost so much weight.
Already spoken to the doctor about how I’m feeling and obviously waiting for her diagnosis, basically just told to crack on.
I just don’t know what to do anymore, I don’t even know who I am anymore. I have no life, I’ve lost all my friends, family have no time for her.
I just need a chat. I feel helpless.

As the parent of two autistic young people who have had difficult times in their lives I would say pick your battles.

You don't say how old she is but can you figure what is causing her to lash out? Does she have to do everything she is refusing to do?

It's bloody hard work. Self care is important. Having a diagnosis won't make the issues go away.

Try reading the book The Explosive Child by Ross Greene it has some good strategies.

I'm so sorry, it is really, really hard. How old is she? Will she go to bed soon and does she stay asleep for a decent stretch?

It's bloody difficult I know.

She is 5. Pathetic I know, allowing a 5 year old to make me feel this way.
I love her more than anything but she has truly reduced me to nothing. I know how awful I sound, I have really tried absolutely everything.
I have read the explosive child cover to cover several times, alongside countless other books.
The things she refuses are literally survival things like eating and drinking, she would rather hold her urine in to the point of getting a kidney infection than have a wee.
Shes smashing the house up, hurting her younger sibling constantly.
I feel like a complete and utter failure.

Do you have a partner OP? How is she at nursery or in other situations outside of the home?

Yes a wonderful husband.
Horrendous in both situations. School and outside the home. We can’t enjoy anything anymore as a family.
Theres been a HUGE regression lately and her already ‘bad behaviour’ has sky rocketed.
Every day ends in tears, all of us apart from her obviously.
We are trying and trying and nothing is changing or working.

That's really hard OP.

Has she seen an occupational therapist?

I would highly recommend that you seek an OT with experience of sensory integration out. My daughter has had similar behaviours. It sounds as though she is not getting the messages in a normal way.

With food does she have any foods she will eat, don't worry about variety or times?

With urine holding that is really hard. I don't have any specific advise on that. Has the GP been able to make any suggestions, again this is something for an OT.

Look at the referral in your local area. Our area allows self referral for NHS OT but it is something that your GP should be able to assist with.

You are not a failure. You are doing your best.

Is she frightened of something in the toilet environment? The flush for example? Can she vocalise what is going on?

have you looked at pda.
she’s either pda and you need to use those techniques (there is the pda charity - www.pdasociety.org.uk)
or she’s extremely sensory

Yes, this is a good shout.

Has she just started reception? That could account for regression. It might be better for her to go to a school specialising in autism. See if she improves during half term when she can rest a bit. If she's better (my son was always amazing until he went back to school) then you know it's school.

Can you take turns with DH - 2 hrs on, 2 hrs off with her.

Separate her from the vulnerable child so she’s 1:1 with one parent until shift change.

One of the first things a therapist will
tell you is that she’s not in charge (I know) so if you set up this pattern, stick to it. Stick to as much normality as you can - whatever’s going on, ruining the rest of the family is not an option. That is a realistic goal you can aim at, so don’t despair. 💐

I feel your pain, I'm sorry you're finding it hard right now.
I have a 7 year old who I've always believed had ADHD since just over a year old. The terrible twos started early and I feel never disappeared the same way their siblings did.
I have spent what feels like a lifetime trying to 'correct' their behaviour, which I feel has made school a more positive experience but home is more or less a daily challenge still.

One thing I know really made a difference was remaining entirely calm, and when they are in a rage really sympathising with them and understanding that however trivial the problem seems, to them it clearly feels like alot.
It helps to be able to pick up on cues from them, I can tell when mine needs to burn of energy outside or a device or colouring activity to switch off. Playing some favourite songs can also help too.
I talk to mine all the time when there has been unacceptable behaviour, and really drum into them how upsetting it can be.

I also use the word 'we'alot.
I.e we don't do this or we must be kind.

Use the power of your voice and body language to try to cool the fire she has within.(sorry if that sounds strange, it's the only way I can think to put it!)
And not that you dont already, try to show her lots of love and encouragement. Let Dad take over when you're exhausted, because I know it's all a draining process!

Good luck.
Slow and steady you will reach a better place x

You don't need to say you love her because most of us who've been here know you do 💐

If she isn't at school yet, once in school you'll have a break and some respite which is essential for you.

My young teen is Autistic/PDA and ADHD. Ended up having to go private as everyone gaslit me and NHS assessment declined. The school didn't help. Once diagnosed everything changed for the better. The guilt goes, the shame goes, the gaslighting won't work anymore ( e.g others blaming your parenting). It changes your mentality and mindset which brings some calm.

The Explosive Child is helpful but quite alot to take on. To simplify it, the focus is on doing this;

i. Pick your battles. If you're having a really tough time with behaviour then who cares if one teeth brush session is missed. Let them watch TV with dinner, it's not going to kill them etc etc. Don't buy into the TV is bad, screens are bad whilst you're working this all out.

ii. Move away from authoritative parenting. You don't have to overpower and win. Look at negotiating a bit more over things that aren't a big deal. You want 5 more minutes? Yeah ok, I can do that.

iii. Give choices. This one has been transformative in my life. You want to get dressed now or in 5 minutes?
You want to walk out here yourself or you want me to carry you out? ( Make sure you always follow through on that one).
You going to brush your teeth now or you want me to come brush teeth with you in 5 mins?

Iv. Once child has completely exploded ( it's really a meltdown), just don't speak. Say nothing and just regulate yourself. Talk about what happened and enquire ' what was all that about' at bedtime when everyone is happy and calm.

If PDA is involved, which sounds like it might, autonomy and control is so important to your child. Giving choices as above, the negotiating and letting stupid stuff go allows for autonomy and control and helps immensely to bring less resistance and frustration.

I used to shut myself in my room, cry and imagine punching my child in the head. That's how much it broke me. I never did but the extent to which this broke me is immeasurable. The shame I absorbed from others such as family and parents quick to judge me as an ineffectual parent and the reason for all this behaviour really contributed to this anger and despair. Now it's all gone. My child still challenges me but nowhere near like this and I'm really proud of the person he is ( most the time 😆). He's hilarious, thriving and loves telling everyone he's ND.

I would also reach out to the school and see if there’s any support they can offer you. There may be some weight in opening up to Early Help or, in my areas, we have Reaching Families / Enabling Families.
The school would be able to direct you to any local support / charities/ SENDIAS.
There is no shame in asking for any outside help

I’m sorry, it is really horrible isn’t it. My child went through that and now older they are so much better. I think 5 is a very tough age. At school? Is it a good school for them? My child used to be so anxious about the transitions, even very small ones, that they would be extremely behavioral. It was awful. Three schools and then finally we found the right one. Once that clicked into place anxiety and behaviour improved. I wish I lost weight - I binge ate/eat to try and stop feeling bad.

Your daughter sounds like she is in flight/fight mode. Perhaps medicating for anxiety will
calm her down. Speak to your GP, maybe even a new one. In Australia we see a Paediatrician who monitors development/progress every 6 months.

You need to find a release for yourself - private counselling or talking to a support group. I know it’s hard, and you think what is the point when that doesn’t help the child. I found it hard to start but ultimately very helpful.

A therapy that deals with whole family like RDI would be beneficial. And I think it’s more important than speech or OT right now - prioritize the relationship, not the behaviour. If you focus on bad behaviour, you will get more of it.

As for being a family and doing things together. So important to do but start small. No theme parks or cinemas or restaurants yet - something free so it doesn’t feel like a “waste” if it goes south. Try a short walk together, or jumping on trampoline all four of you, or hide and seek in the backyard. Keep it simple, slow down, do less, and stop the activity when it was successful, as in cut it short, stop playing - end with success and say I loved playing that game, thank you for playing everyone in the family. Give the next step after the game to aid the transition.

Hi OP, I just want to say you are not alone, I am going through the exact same with my 4 year old DD at the moment. I love her to pieces but it is draining me. It is so hard to know what the right thing to do is, especially when you don't have an official diagnosis. We have been on the waiting list for 9 months so far and have considered going private for a diagnosis but I have heard a lot of private diagnosis's aren't recognised by the NHS and schools.

@wildmushrooms I believe this is often a gaslighting tactic. We had a private assessment which followed the NICE approved assessment procedure. I can't recall what it is called again but there's an approved standard approach to assessment that you can't argue with if followed by any qualified professional.

The assessor we used also included an agreement to have contact with any professional body who wanted to dispute the diagnosis or ask questions. No one has.

With all due respect to the decent SENCOs, when you present the above to a SENCO with the diagnostic report in writing, they haven't got a leg to stand on. They just want you to shut up and go away because it's a huge resource stress for schools atm ( care of the Government).

If you make it clear as nicely as poss that you know what you're talking about, I'm confident parents will do fine with a private diagnosis like that I describe above.

I recommend Creative OT if you're in England. Specialists in working with kids regardless of diagnosis status with additional need, sensory issues and ASD. Real practical therapy as well as tips for you but certainly not all about how you need to change.

Best of luck. Sounds like you're all suffering.