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.

Also being made to wait for anything. DD interrupts most conversations and despite my best efforts has never understood the practical side of waiting her turn to talk.
She will wait for maybe 30 seconds to speak now whereas before she wouldn't wait at all. She can tell you why it is nice to wait but then can't seem to put it into practice herself.

She will share sweets and toys and expects to take turns but If someone else shares their toys, she doesn't want to return them and has broken other children's toys in front of their parents when that parent has demanded she return it immediately despite me cajoling DD into returning it at the same time.
Parents just talk over me probably because they don't agree with my method even though I know it is the most effective way of getting their child's toy returned in 1 piece.

DD is not unable to play nicely. She will share her sweets and toys and can go to great lengths to give other children what they ask of her.
She regularly makes things for other children and draws pictures for other adults.
She can be very gentle with children she deems to be babies or sees as disabled. She can show great empathy at times.
I don't want to paint her all negatively because there is so much more to her than the negative side. I just don't know how to deal with the negative sides. I seriously need a thicker skin.

Yes you would need CAMHS to refer you. They are national clinics so will see your dd if she is referred. They are way way better resourced than local CAMHs so can spend loads of time with you and dd. I spend literally hours fllling in all the questionnaires before my dd's assessments. I personally found that the psychs at GOSH were much better at engaging my dd too. Complex, difficult, hard to diagnose cases are part of their remit. If your local CAMHS are basically baffled/or for any other reason they can refer.

What I did was research the clinics at GOSH and the Maudesely, checked the referral criteria - they needed a referral from a consultant psychiatrist I think - then met the psychologist we were working with at local camhs and requested that they referred her. I took someone else along to this meeting as found it quite nerve wracking - am also not v confrontational (or used not to be) - but it worked. I emphasised that I was at the end of my tether and that she was expressing suicidal ideation and had tried to seriously hurt her younger sister.

I haven't read the thread as no time but want to tell you that CAMHS diagnosed DS with ADHD and ODD so the stuff about them not recognising it is nonsense. Would a different CAMHS help?

No real ideas I am afraid but sending you tons of energy and positive vibes and alcohol and cake. It sounds horrendous and I wish I had some good ideas for you.

Fuck the judgey tutters and eye-rollers. They have no idea.

A statement should be given on need rather than diagnosis so do not worry they have not given your daughters problems a name yet in this respect. Multiple exclusions & being sent home when school did not cope was sufficient evidence for my two who were not diagnosed at the time.

For ds1 a placement in a primary EBD school has worked wonders - small class size, understanding staff & high staff ratio. The quality of these schools does vary between areas but if it is suggested I would recommend you go and take a look with an open mind. We also see the benefits at home - I don't think I had honestly realised how much stress being in a large mainstream school was causing him until he was in the EBD school. If I am totally honest it was a huge stress relief for me and dh too as suddenly he was not the odd one out anymore - everyone had meltdowns so it became normal and you were not made to feel like the worst parent in the world anymore.

In ds1's school about 50% of the children had an ASD or ADHD diagnosis so although it is an EBD school the staff know about ASD issues well.

There seems to be a huge disparity between different areas on ease of diagnosis but I am a bit surprised that you were told PDA is not a known diagnosis as it was certainly discussed with respect to my two. I wonder if it is worth contacting the Elizabeth Newson Centre in Nottingham for advice (these are the people who first defined PDA). I am pretty sure mine are not PDA but they have an awful lot of PDA-like issues when they are stressed.

Hi have sorry to hear you are struggling so much.

I have 2 daughters with Asd, both were missed at 5 and one was diagnosed at 9 after years of assessments and appointments. Do not give up!

When you get to Tier 3 at CAMHs ask if anyone is qualified to do a DISCO assessment. It was specifically designed to root out the people who are difficult to diagnose, girls often fit in this category.

ADOS was designed to be used to diagnose boys and only boys were used in the trials (apparently). The so called Proffs who said she couldnt have Asd because she gives eye contact are useless. Every single child with Asd is different, some learn to give eye contact, others dont.

Also the comment about PDA shows how out of touch they are with reality, PDA exists and Proffs with up to date training are picking it up.

Have you tried using visual cues to support understanding, you say transitions are awful, you could try a "Now and Next" board with pictures of where you are going or what you are doing. A simple version would be a picture of your home and a picture of her biscuit. So you show her both pictures and say, "Now we go home, next you have a biscuit"

I dont know if it will work but visuals made a huge difference for us. We use a red and yellow card (like footballers) to help Dd3 rcognise when her behaviour is becoming unacceptable. She is older than your Dd so understands the rules of football.

One of the best bits of advice I was given in the assessment process was to treat Dd 3 as if she did have Asd even before diagnosis. The strategies used with children with Asd may work, they did for Dd3 and they certainly cant do any harm.

Keep coming on here for support and advice and good luck

Visuals have helped here too. Also (sorry you may have tried all of these but could be helpful):

For transitions - have school limited the number of them? Eg no assembly. Can she transition to things 5 minutes before/after everyone else so the place she is leaving/going to is less sensory overwhelm? Dd1 ran away almost every single morning going into Reception and I started the day chasing her round the school. In Y1 she went in 5 mins early and it worked brilliantly.

Totally agree with PolterGoose re baby steps. It took ages with us but one day I realised she had totally stopped the horrendous violent attacks. She has had flare ups since but is learning to tell me when she is starting to panic and to ask for alternatives. With PDA children hand and foot massage can work really well. Sometimes when she wants to hit me she will ask me to squeeze her hands now - massive, massive progress.

Also re transitions - if she likes playdoh have you tried taking a pot with you? Timers - sure you have used them anyway - I have used timer followed immediately by reward to be useful for transitions. Eg 'When the blue sand is finished we will leave and you can have a biscuit/playdoh.' Closely followed by distraction to get her out of the door. Promising a reward at home might be not immediate enough?

And also - reduce sensory overload when making transitions might help - using ear defenders, a hoodie, sunglasses.

And definitely work on reducing anxiety overall and getting her to talk to you.

Please don't let the smug superior parents of perfect NT children make you feel down, they haven't a clue about parenting your child. I always think they are the equivalent of Stepford Wives in their perfectly ordered sterile world of social conformity and predictability.

Have you thought about using a visual timer for your dd, verbally prompting 'x minutes to transition' won't be understood, but perhaps something she can physically see counting down with your added verbal prompts might help, so that to her the transition is not suddenly an either/or prospect, because she can visually anticipate it. This sort of thing :-
www.friendshipcircle.org/blog/2012/11/06/20-visual-timers-for-children-with-special-needs/

Have you looked into conduct disorder? she doesnt sound typically ASD to me .Does she do ok academically at school?

Thanks for the links Polter. They are very useful. I'm making my way through them and there is some very useful information there.
I'm surprised that in this day and age when parents extol the virtues of being all accepting of differences in children, parents of sn children as well as the children are still treated as pariahs in their own communities.
The visual timers look like they might be helpful. I am going to buy one for when we are out and try it out on small trips to the local park first before venturing further.

Academically DD hasn't really progressed at all in the last year with the exception of reading.
What is conduct disorder?

The EP said they were of the belief that DD had some kind of parental attachment disorder although I have little idea what this is.

I now have SS paying a visit today after a referral was made to by a support worker who is concerned about DD's safety after she escaped from my house and ran away.
This may sound appropriate but DD has also escaped from school 5 times, and has run away from this support worker too but of course the spotlight only falls on me despite the support worker knowing I have now introduced more locks and bolts and it hasn't happened since then. School have put extra safety measures in place too but the support worker hasn't yet they are not being assessed. Is this because DD was at a play session arranged through the school with the support worker for DD and this is automatically deemed as safe enough??
It feels like those in glass houses are throwing stones and I'm a little cross to be accused of not keeping DD safe when no one can say what more can be done now and cannot help with anything else.
I'm not sure what I should be asking the SW for.
Safety bars on the windows so I can open the upstairs windows without DD flinging herself out? Things like that?
Someone to accompany us on days out so we can actually go places during the holidays? I'd love DD to have swimming lessons but she wouldn't be safe with the usual swimming lessons where there is 1 teacher to 8 children. Are these the kind of things SW can help arrange? Or are they there to just accuse and demand I sort out to their satisfaction?
It's all a minefield!

Thank you all for your invaluable advice so far.

Girls often miss out on an ASD dx as the ADOS is biased towards boys As an adult woman, I struggled to obtain a dx myself. I was told some pretty sexist things at the assessment, for example my special interests weren't weird enough (i.e. not typically male) and I didn't lack imagination as I was creative.

The fact they are trying to pin attachment disorder on her makes me suspicious, would they even do this if she were a boy? I am beginning to think the misdiagnosis of women and girls and is feminist issue. My ASD/ADHD boy exhibits lots of dangerous behaviours and no one has ever suggested attachment disorder. Seems another excuse to blame the parents. A replacement of the old refrigerator mother syndrome

On a practical note, this is what has worked for my son:
Sand timer to finish activities
Absolutely no shouting from either of us
calm reassurance with no touching during a meltdown
Allowing him to run off in the supermarket (he always runs to the magazines or toys)
If he climbs or misbehaves, we walk away, he will follow eventually, Obviously there are some boundaries here, if he is doing something dangerous I will count backwards from five until he climbs down, but most of the climbing is not that risky

Also, when you are at the park or soft play, just let her run off, honestly she will be fine and your life will be a lot easier (obviously the road is the only thing you need to worry about)

Things will get easier! my son has just turned 8, and is just starting to listen to reason

The paed who diagnosed dd1 with autism thought she had attachment disorder. Apparently this is a really common thing for kids with PDA to be mis-diagnosed with. It is the hyper-vigilance and separation anxiety that confuse I think. A friend of mine who is a social worker in adoption and fostering commented on dd1's hyper vigilance and said but if you watch her for a while and you know her you can see she is also totally different from a child with attachment disorder - if that is you really know what you are talking about. I think a lot of drs are far too free and easy with suggesting this just because of some superficial similarities!

thedevilinside - that is very interesting about gender and diagnosis. Interesting too what someone said upthread about ADOS being designed around boys needs and failing to pick up girls. I definitely think there are feminist issues around the dx of women and girls!

Can't read all of the posts when on my phone so sorry if I miss any.
SW is running late.
What is a carers assessment? What is the SW assessing me for?

I'm not sure if DD has separation anxiety. She doesn't look for me if she runs off. She just runs without a backward glance. I've tried hiding from her in a supermarket before to see how she reacts but she just checked if I was there and then when she saw I wasn't, she laughed and continued running.

She has no boundaries and hugs anyone, strangers or not.
She is more likely than other children her age to happily go off with a stranger.

I watch her in the park but do let her run off and play because I don't want to restrict her to the point where she has no freedom.
She has to be stopped from climbing high because she is liable to jump from quite high heights if not intercepted although she has recently begun to ask me to help her down if I am there and she has managed to climb high enough.

It is an organisation who the EP got involved who have decided, without a diagnosis I might add, that DD has some form of parental attachment disorder.

DD runs outside the supermarket. It is the rides outside that she runs to.
If I have to go to the supermarket, I use the rides as a bribe if we get through the trip without too many problems and DD behaves.

What sort of respite activities would that include polter?
There is a scheme for special needs children where they get 1 to 1 supervision while they are there but it is expensive imo.
Would it include this sort of thing? It is a first come, first served basis.

Under similar circumstances (absconding) it was the "safe-guarding" team which got involved first.

Despite the intrusion into your home we did regard it on balance as a positive as (I) They helped us chase up appointments with respect to diagnosis and (2) They were able to refer us for some support.

It was not until my two were diagnosed (AS) that they got taken on by the more appropriate disabilities team and we were given some respite. It did take a bit of a battle as the disabilities team seemed to be very over-stretched.

In our experience the difficulty is keeping social services interested in giving support rather than vice versa.

SW was very helpful although I'm holding my breath at present unless it comes to nothing. Sorry for appearing negative but this journey has taught me not to count my chickens before they've hatched.

SW said she could see that I needed a lot more support than I was getting. She said that this was no reflection on my parenting.
She said she could see I am doing all I can but keeping DD indoors to keep her safe is not enough for me or DD.

She says she is going to put some support in place for this holiday and is going to find out what is available locally within my vicinity which could include activities DD can go to where she will have the support she needs. She wants to contact 'Family Solutions' to access some activities for DD and she wants to see if she can access some respite for me so DD can either have someone come to my house to play with DD while I get on with things I need to do, or to take DD out to activities so I get some respite to do something for myself or just to go shopping if needs be.
She said she is going to apply for DD to be put on the 'child in need' register to access as much support as possible, not to judge me but because DD does need extra support.

I hope I haven't got a ball rolling that is going to run away with me.
I hope this isn't a bad thing.

She said she will get back to me by the beginning of next week and wants to offer DD and I support for this holiday.

She really seemed to understand.

I can hear a little voice in my head saying 'If it sounds too good to be true, it probably is. '

SW also phoned DD's SENCO while she was here and the SENCO reiterated everything I had said, and they talked about some respite and play schemes, possibly 1 to 1 swimming lessons or at the very least a swimming teacher who definitely understood DD's difficulties which I think would be amazing for DD to do.
SW wants to be kept in the picture and be kept informed of outcomes of meetings wrt camhs, school support etc so she can also help support DD and I.