Please someone help? Life is hell!!

[havehadenough]

DD and I are not compatible at all. I am very non assertive, non confrontational, will avoid a scene rather than face one. I accept this is my problem and I am trying to deal with it, but living with DD's problems is so difficult, verging on the impossible.

DD has very challenging behaviour. She has had an ADOS assessment where I have been told she does not have ADHD and is not on the autism spectrum. I asked if DD has PDA or ODD but was told these are not recognised and do not mean anything, they are just a convenient label for children who have behavioural problems and do not have a medical diagnosis, ie: Autism or ADHD.

A referral has now been made to CAMHS tier 3.

DD is 5.

The biggest issue at the moment surrounds DD's meltdowns. She regularly has a meltdown when asked to leave somewhere or when she is asked to do something she finds difficult as well as other things, but those are my most pressing problems to find some sort of resolution to.

When in a meltdown, she will attack other children and adults, headbang ferociously, scream, kick, bite, punch, point blank refuse to stop the activity or leave the venue and run away at speed, usually around and around the venue.

For example; If I take DD to softplay, she is quite happy so long as there are no queues to get in, but once in there, if something upsets her, and quite often, I cannot predict what will upset her, she will go straight into attack mode at the nearest person.

I give very clear warnings that the end is approaching. 5 more minutes DD, 1 more minute DD, but she has no real concept of time so these are usually just water off a ducks back although it also feels wrong to 'spring' it on her.
No matter how I play it, she cannot cope with the end of things. She will run off laughing into the softplay area, in and out of ball pits and up and down flumes. It makes it worse to chase her, and she is far faster than me most of the time anyway, but at this point, if I don't catch her somehow, it ends up with her attacking other children or adults if they get in her way.
If I grab her and say calmly, we have to go now, we will come back another day, DD just goes into a complete meltdown where she glazes over and isn't responsive to any suggestions apart from me letting her go so she can do what she wants to do, scratching, screaming, swearing, biting, punching, kicking, threatening me. I literally have to drag her to the car which is no easy task due to her strength.

It is absolutely awful.

The transition to and from places has led to her being temporarily excluded from school for attacking children and adults because she doesn't want to come in from playtime, return to class, go to assembly, sit for registration, school have no idea what to do with her next and have got into a pattern of letting DD do whatever she wants to do to prevent a meltdown. It has reduced the number of meltdowns but doesn't actually resolve anything longer term.

Now it is the 6 weeks holidays and despite feeling extremely guilty about this, I just don't think I can face taking her out of the house at all because I don't know what to do to keep her safe or to cope with the meltdowns.

I have had parents being very verbally threatening towards me because I cannot control my child. I am at the end of my tether, and need some help.

DD has no fear and very little understanding of cause and effect. She fights when she has to hold hands but is liable to run across roads.

I just don't know what to do to keep her safe and retain my sanity, and that's not meant as a joke btw. I am becoming more and more depressed at how futile it all is. There appears to be no light at the end of the tunnel.

I have no support from family, and I am a single mum. I have only 1 friend left because DD gets upset if I have anyone to the house unless they are specifically playing with her. She can wait for possibly 1 minute for my attention, but wont play alone if anyone is here. I cannot speak on the phone either because DD begins chanting loudly and headbanging or destroying things.
If it is just DD and I at home, and I am not giving my attention to anyone else, DD is usually fine, but DD and I want to be able to go out during the holidays and enjoy our time together.

I am tired of the judgemental staring and the whispering behind our backs of what a shit mother I am, I am sick of the threatening aggressive parents even though I understand their frustrations when their children are being hurt. It seems the sensible option is to keep DD locked away in my house for her own safety and everyone else's safety too.

When DD is out of control, people look to me to bring everything back under control, and I hate to admit it, but I have no control over DD when she behaves this way, to calm her down or get her to stop. I have tried so many things, but none are particularly effective because DD senses it is the end of something and cannot cope with that.

This is not a case of poor discipline because I have tried consistently every single method of discipline known to man and they just don't work. Oh how I wish something did.
DD is usually fine so long as we are at home, and no one rings or comes to the house. We have very few meltdowns at home in comparison to how many there are when we step out of the house.

I want to give up but I can't.

I don't even know where to begin when parents approach me to tell me DD has once again hurt their children. I understand the concept that children feed off of their parents anxieties, but everywhere we go, as soon as DD is within arms length of another child, I am churning up inside. I cannot stop that feeling even though I don't think it shows.

I am sick of plastering a smile on my face and talking calmly when it doesn't change anything and hasn't changed anything in years. I don't feel calm. I feel like a raging bloody tornado who doesn't want to be on this ride anymore, it is spinning me around at dizzying heights, I feel sick and shaky and I want to get off, but I can't!!!!!

If I take DD out of the house and she has a meltdown, what do I do? How do I catch her? What do I say to the other parents? How do I cope?

I have tried holding her hand everywhere, but that only works until she wants to go on a slide or a roundabout or swimming or softplay or a ball pit or until she wriggles free. I have lifted and moved her and continue to do so but in great pain because I am not a young mother and I suffer from back and joint pain. I cannot hold her at those things. It is easier (yes for me) to not go at all, but this feels unfair on DD when she is already struggling to cope in a world she finds impossible difficult to understand.

Please, any tips or advice would be very much welcomed at this point.

We have various people involved but not much support during the holidays when we need it the most. Atm, we have been assigned a support worker who we've not met yet and who works one day a week. I have no idea how many children she will be working with.

I want to hide in bed for 6 weeks. Please give me strength to get through the next 6 weeks.

[havehadenough]

Also, I have bought and read 'The explosive child' by Ross W. Greene, but it doesn't cover what to do when you are out and your child has a meltdown.
DD will talk over a resolution she and I are both happy with when she is at home, but she doesn't remember once we are out and so the meltdowns are not avoided.

I am also fucking tired of explaining to people I know, only for DD to have a meltdown in front of that person, and when DD has calmed down, and is once again receptive, that person then says, usually to DD, 'If you were in my house, you wouldn't behave that way!!'

DD argues 'Yes I would.'

Other adult sternly says 'No you wouldn't. In my house, No means no!!'

DD; 'No it doesn't. I'm not listening.'

Other adult turns to me; 'She wouldn't last 3 days in my house before she changed her behaviour!!'

I'm such a crap parent that I smile while thinking 'YES, YES SHE WOULD LAST 3 DAYS BECAUSE DD WOULDN'T GIVE UP BEFORE YOU. YOU DON'T HAVE THE FUCKING ANSWERS!! EVEN THE FUCKING PROFESSIONALS DON'T HAVE THE ANSWERS SO WHAT MAKES YOU THINK YOU ARE THE ALL KNOWING ALL SEEING FONT OF KNOWLEDGE!!!! FUCK OFF WITH YOUR SMUG SUPERIOR 'MY CHILD WOULDN'T BEHAVE THAT WAY!!' ATTITUDE whilst simultaneously ripping my hair out!!!

[sickofsocalledexperts]

I would look to find a behavioural expert from the ABA field to help you, as it sounds hugely difficult.

I have a friend with a daughter who sounds very similar

CAMHS just might refer if you can't afford, as they are supposed to look at behavioural methods before resorting to medication

There is a website called ABA tutor finder

[reader108]

Really feel for you both. You need help and advise as soon as possible. Don't know what more to suggest, except ignore others opinions when out only you know your Dd and her needs

[FancyAnOlive]

You poor thing. I can totally empathise - my dd1 is v similar though much easier in the sense that she only attacks me and dd2 and other very close adults - most of the time anyway. the few times she has attacked others it has added a whole new layer of horrificness so I feel for you.

I would totally ask for a second opinion re the ASD - I think GOSH has a specialist clinic for this. How have the drs you have seen so far explained the difficulty with transitions if not ASD?

I have found some of the PDA stuff works with mine. She is better at the moment but it has taken a year of work and an amazing class teacher to get her into this position - but reward strategies actually work with her now.

Is she attacking partly for the sensory input do you think? I ask because mine does - and if I can grab her and do a rough tickling game and sit on her I can ward it off. She can ask now to be sat on when she wants to hurt us - not all the time, don't want to sound smug - but some of the time at least.

[havehadenough]

Thank you for the supportive feedback. I truly believe that if DD could behave differently, she would.
When she is at home, she can be very affectionate, and when I ask her if she can think of anything that makes her feel sad, she will say 'Let's just talk about something else Mummy.'
She has been assessed by 2 different EP's and both have said DD is hyper vigilant, with major anxiety issues so I can relate to that.
I am told by paediatricians that DD doesn't have autism because she maintains good eye contact and has good communication skills although they accept she needs to control situations and say it is a mental health issue, not a medical issue.

DD loves other children and can show huge amounts of empathy towards younger children or disabled children if she can see their disability.
She is very active and very competitive. She has sensory issues but apparently not severe enough to be diagnosed with SPD.
I have read quite a lot on PDA and explained to the paediatrician that DD fits the profile but he just said PDA doesn't exist, it is just a label in the absence of an autism diagnosis as is ODD.

[havehadenough]

The doctors haven't explained the transition difficulties nor the sensory issues.
DD loves anything squidgy, like sloppy mud or sand.
I fight my need for clean every day.

[FancyAnOlive]

I think PDA is being diagnosed in some places though, even though it isn't in the DSM. I went to the conference on it last year which was v interesting - as dd1 is very PDA-ish too. You could try ringing the Newsom clinic/Sutherland House people, they were v approachable. Also there is a place in Bromley (the Lorna Wing Centre perhaps?) which will assess and diagnose PDA.

Also I know some people have dx's like "ASD with a profile closely resembling that of PDA".

Some girls with ASDS are quite social and have good eye contact too.

[havehadenough]

I think she attacks because she goes into 'attack' mode and that's when reason goes out of the window. She erupts into a huge meltdown and it's just like she's gone from jekyll to Hyde or whichever way round it is.

Her sensory needs are more wanting to smother herself in thick oozy mud or washing up liquid.

In some ways her behaviour and thought process resembles that of a much younger child.

My poor poor DD. She tries so bloody hard when she is aware of what she is doing but this thing is often bigger than she is.
Anyone who has worked with autistic children has asked me if I have ever had DD assessed for autism but every paediatrician just focuses on the speech and eye contact and boom. . No diagnosis.

[FancyAnOlive]

Where has she been seen? And - what does CAMHS tier 5 mean? I think in your shoes I would push for her to be seen at GOSH or the Maudesly or somewhere. Only 2 paeds have seen her. Some girls are hard to diagnose, maybe they are both wrong?

God, sorry for all the questions - I sound like I am interrogating you.

[havehadenough]

I don't know if this is helpful or not but she is also very needy at home. She comes virtually everywhere with me, even to the toilet. If she cannot see me, she is likely to headbang on the bathroom door and get upset.
We Co sleep, partly because I can't trust her not to leap out of a window and the house is double locked where possible to stop DD running out of the house.

[FancyAnOlive]

Sorry tier 3.

[havehadenough]

Sorry i meant to say camhs tier 3.
She has been seen by camhs tier 2 but they said they were the wrong dept because they dealt with behavioural issues caused by external factors such as drug abuse or alcohol abuse, children who were victims of DV and the resulting behaviour issues.
Camhs tier 3 deal with mental health and carry out assessments but if they suspect ASD or ADHD, they usually refer back to paediatrician again.
So far DD has been seen by 2 NHS paediatricians, and the general paediatrician multiple times before that.
Both times i have been told to ignore the unwanted behaviour and reward the good. That isn't effective.
DD self harms by biting herself too. She also finds it difficult to separate fact from fiction too and can regale people with very plausible stories until she is questioned further at which point she forgets what she has said.
This has resulted in referrals being made to social care. I am still awaiting the outcome of those referrals atm.

[FancyAnOlive]

She sounds very like mine in some ways. Mine comes everywhere with me too. It is totally exhausting and sometimes I feel desperate to get away from her. No one else wants to/can look after her because she can be so challenging, and if they do I have to pay for it afterwards anyway. She has dx's of autism, tic disorder and is just being assessed for ADHD now. Very very anxious, last year attacked me and her sister constantly (gave my mum a black eye).

Can you try to work on her anxiety at all? Am using a worry box with mine with some success. We read a book called 'The Huge Bag of Worries' which is good. If pads/CAMHS can't come up with any other diagnosis maybe they can accept that she is hugely anxious and help you with that.

Or if she likes oozy sensory stuff, can you use that as a reward at all - or is there anything at all she really likes that you could use to get her to transition.

You remind me of me last summer, which is why I am posting so much on your thread - I felt so trapped - things are not easy now but they are so so much better.

[havehadenough]

There was a speech and language therapist at the assessment and an occupational therapist. They could see the difficulties but just explained it as a jekyll and Hyde character.
She has been seen and assessed by so many people in the last 2 years.
School ed psych, area ed psych, specialist teacher. The senco works very closely with her on a day to day basis and says DD is the most complex child she has ever come across.
She has been seen by 2 paediatricians and a general paediatrician lots before that.

Everyone who sees her except the paediatricians think she is not on the autistic spectrum.

I feel like acquiring a head banging habit myself.

I do get DLA and CA because I cannot work due to having to be up the school at virtually a moments notice because when DD has a meltdown, school can only try to calm DD. They don't know if what they are doing is effective or not and quite often, they resort to sending DD home because she has become so disruptive.
She is not really learning anything at school because all focus is on preventing DD having meltdowns.

A couple of staff from a special school visited to observe DD and she had a meltdown and I was told they struggled to deal with her too.

It scares me how out of control DD Is if at 5 years old things are so bad that teachers from special school are struggling for one afternoon.

Having said that, the piles and piles of evidence is not enough for the paediatrician to formally diagnose because it's not ADHD or ASD I his opinion and therefore not medical so not in his remit.

DD needs a lot of coaxing to actually get her to school and now school say they cannot cope and don't know where to go from here. They have applied for a statement but are not hopeful without a diagnosis.

[havehadenough]

Thank polter and fancy.
Your posts resonate with me so much.
I know to the fleeting glance of the outside world it looks like a naughty child who lacks discipline but if only discipline was the answer, my life would be a million times simpler.

[havehadenough]

If I could just prevent DD from feeling so anxious in the first place, but I don't know how.
She doesn't seem to remember anything we've talked about when she is in a rage.
Rewards are something I use, bribes if you like. 'if you walk home nicely we can get the pool out/play doh etc.' but these aren't always effective.
In fact nothing is consistently effective.
There are fleeting moments of something being effective and the people who think them up, usually school or people we know who we see while we're out who know DD, react jubilantly, seeming very proud of themselves for 'cracking' the problem but even as they are praising their brilliant light bulb moment, I know it won't work for long.
Her deadbeat father swore the way to control DD was to tell her santa wouldn't bring her lots of nice toys if she didn't behave because it was effective for a couple of visits. It wore off quite quickly, about as quickly as his commitment to DD.

[havehadenough]

Thank you polter. I can't tell you what it means to read your posts and feel like you truly understand where I'm coming from.
I have had other parents ask me if I've tried removing privileges or the naughty step because hey, it works with their 2 year old.
I've listened to people telling me that all DD needs is a good smack or 'You'll never find a partner unless you start to show DD who's boss in your life! '
'You just need to get on her level and explain what you expect from her.'
'Have you tried being consistent? '

Fuck off, just fuck off!!!!! Yes of course I've tried all of that!! Do you think I am completely ineffective?
Of course I don't actually say that. I just grit my teeth.

[FancyAnOlive]

If she is that complex then she deserves to be seen at GOSH or the Maudesly or somewhere else that is a national centre of expertise and sees children from across the country. I think GOSH has a specialist clinic for difficult to dx poss ASD kids and the Maudesly is supposed to be the best in the country for mental health stuff for kids - have heard it is absolutely fantastic. It is not good enough for you to be told that she just has a Jekyll and Hyde character. You and she both deserve better! I managed to get my dd1 to GOSH (had to fight CAMHS for that one) but worth it as amongst other stuff they have done a whole day of cognitive assessment with her which has been fantastically valuable. A large part of why I got the referral was dd1's extremely challenging and violent behaviour and your dd sounds similar. Those national services are there for kids like ours.

Can you get out at all? Are there any adventure playgrounds for kids with SN near you or any useful organisations with stuff going on? Hard for you to access stuff without a dx though.

What do you think of the school? What do they have in place to support her?

[havehadenough]

I'm sorry if I sound angry and impatient with other parents when I know they are just trying to help, but I don't ask other parents for advice anymore unless they tell me their child has special needs similar to my child because the majority of parents have been blessed with children who do not have these issues.
I have been blessed with a child who does and cannot expect them to relate to our difficulties, that's why I grit my teeth and smile and thank them for their advice.

I just do get tired of justifying myself to people who don't understand and I don't blame them for not understanding because how can you when your child responds as you expect them to??
Similarly, I wish they wouldn't blame me for my child not understanding and responding how the world and I would like her to.

The school have been very sympathetic. They say I'm doing a brilliant job even though I don't often feel like I am. It feels like the blind leading the blind most of the time but what is the alternative? I have to cope, even if DDs father doesn't want to consistently be there, I don't have that option.

There is no option but to keep going and hope one day someone will switch a light on and shed some light on DD so we can get her the help she needs.

[FancyAnOlive]

The rewards that work with my dd are immediate and sugar based, which results in lots of glaring and smuggy tutting from other people but I don't care! I have spent a large part of today saying 'DD1. If you hit there is NO CUSTARD CREAM.' When she was totally out of control last year though this wouldn't have worked. It took a lot of work making sure her needs were met in school for her to calm down enough and relax enough to be able to respond like that. I am absolutely not ruling out meds in the future for her either.

Once your dd is having a meltdown it is impossible to do much about it apart from try to stay calm and keep everyone safe (easier said than done I know). You are going to have to get in there before the meltdown with something aren't you? Do you know exactly what causes it, is it all transitions?

[havehadenough]

How do I go about getting an assessment done at GOSH or maudesly?
Do I go through camhs?

There is a play scheme for special needs children near me where they get 1 to 1 play worker but it is massively oversubscribed and I am waiting for a slot.

I have a support worker coming next week who works one day a week but I am not sure how many children she is working with on a one day a week basis.

I take DD to a local park. She enjoys that and sees some school friends there sometimes but my problem is not knowing how to handle it if she hurts another child. I apologise but it seems like it's not enough.
The parents are much less forgiving than the children.
DD appears quite popular atm with a lot of children on the school run although children her own age are wary of her. I totally understand that.
She has a 1 to 1 for half the day at school but because this hasn't prevented the meltdowns and the attacks on the other children or staff, the general opinion is that a 1 to 1 is not helpful for DD because it isn't seen to be improving the situation.

It is very difficult to secure more funding for DD without a diagnosis.

Have to put my phone on charge so apologies in advance for not being able to reply for a while after this post but all of your advice is being noted and you are making me feel like I'm not as shit as I felt before I first posted so thank you.

[havehadenough]

Also what do you do about aggressive parents or when your child has hurt others?
Still trying to work out what DD's triggers are but so far it seems to be almost every transition, sudden loud noises, even children running past whooping or shouting, not necessarily at DD. Being asked to do something she finds difficult or sitting still for any length of time. Queueing. Supermarkets or shops.
Feeling restricted by people, seat belt, so I am anxious when we go anywhere busy or popular.