Child with Autism, ADHD and PDA

[Ironfingers42]

Hello.

Dad here and getting desparate.

Im will try to be brief but I need some sort of support. What that is, I dont really know.

I am married with 2 girls aged 9 and 10.

The 9 year old was diagnosed with Autism and ADHD about 2 years ago. All professionals involved beleive she also suffers from Pathological Demand Avoidance but our local authority don't diagnose it.
Her behaviour is degenerating significantly and she has been out of full time school for nearly three years. My wife and i are locked in a battle with Derbyshire County Council to get an EHCP signed off. This has been going on for 2 years and still isn't finalised.

She is aggressive, violent and unpredictable. My wife and I are generally covered in bruises, nail marks and teeth marks. We have had to remove knives from her and stop her jumping out of a bedroom window. She ties things tight around her neck and tells us she wants to die multiple times everyday.
She attacks her older sister "M" relentlessly. We have had to put a lock on M's door just to keep her safe. M is registered as a young carer and does receive pastoral support from school and Young Carers but is clearly depressed and needs further help.
She has a good group of friends and generally tries to spend as much time out of the house as possible.
But then "D" (the autistic one) gets very jealous and upset. She doesn't really have any friends (which breaks my heart) as she isn't at school and struggles with relationships with her peers.

D is on a new medication. We tried Ritalin but, whilst it kept her slightly calmer, she was taking 3 hours to go to sleep each night. And for those three hours one of us had to sit with her or she would freak out. These new meds are new and we have been warned to dig in for a difficult few weeks but i am starting to lose hope.

Life at home is unmanageble. I cannot remember the last time my wife and I slept in the same bed as D won't settle unless she is in out bed. Our personal, sexual and day to day relationship is non-existant as we have to parent in shifts. We both have shift working jobs and I work very long hours, usually at least 12 hour days. We are not in a position to reduce hours. There is no family time now as D is too aggressive so one has to spend time with D whilst the other spends time with M.

We have no support where we live. My mum and dad are elderly and live 200 miles away and my MIL is 90 minutes away but doesn't drive. She blames us for D's behaviour anyway and says we are too soft on her (which we have never been!) and we have always played second fiddle to her much more glamourous and successful younger daughter (wife's sister) so we get judged rather than helped.

I have tried so long and so hard to get help. I have tried all the techniques in books about autism and they simply don't work. Last time I spoke to an autsim support worker she said "WHEN YOU HAVE A CHILD WITH PATHOLOGICAL DEMAND AVOIDANCE YOU MAY AS WELL THROW ALL THE HELP BOOKS OUT OF THE WINDOW! and it is true.

No one really seems to know what we are going through apart from other parents whom have children with PDA.

I am a police officer and I can rememeber the first time I came across a youth with PDA. I honestly thought "what a load of bollocks. You are just badly behaved" and it took having my own child suffer with it for me to really "get it" and finally understand (I am ashamed to say!).

Life is a struggle and, as a family we are falling apart. I love my wife and kids without question but I am losing hope.

I am utterly exhausted and, whilst there may be the chance of a school place in the coming weeks, I have been let down so many times before, so just cannot really see the light at the end of the tunnel.

People tell me to be positive but I can't see how I can be positive.

I transferred to a northern police force from a southern force 5 years ago and a few weeks ago I told my wife I was going to contact my old force and see if they would take me back and i was walking away from it all. When I said that I meant it. It wasn't in the heat of the moment, but I managed to have a word with myself and talk myself round.

I have urged my wife to sign a section 20 to put D into foster care but she (rightfully) won't entertain it.


I am just falling apart.

Each day when I get up its a case of drawing a deep breath and thinking "he we go again" and gritting my teeth. I used to have hopes and dreams both for me and the family but now my only goal each day is to get to bed time.

I feel utterly exhausted, defeated and a failure as a parent.

Any help or words of encouragement would be appreciated.

Please don't be too harsh. I am clinging on to the edge (sorry if that sounds pathetic).

Ironfingers 42.

[OvaHere]

I'm sorry you are having a rough time. I have a son with the same diagnoses and have been exactly where you are. I know how exhausting and soul destroying it is.

I don't have any miraculous words of wisdom but I do want to offer some hope.

My son was at his absolute worst at this age and I thought it would only get worse. I used to lay awake worrying about how I would cope with a violent teen who would inevitably be bigger than me. I thought about sending his younger brother to live with relatives for safety and to give him some peace.

He is 18 now and what actually happened over time and with the onset of puberty is that he calmed down bit by bit and now you wouldn't really know how bad things were. He still has plenty of difficulties in life relating to his disabilities but the violence and chaos did cease. He even has quite a good relationship with his siblings.

Maybe also cross post this with the SEN Chat board. A lot of posters there are very knowledgable.

Feel free to PM me if you like, now my son is an adult I don't like to give too many details publicly.

[LosingTheWill2022]

I hear you (I'm a single parent to PDA dd now 17)

The quote from the support worker is only partially correct. There are more books relating to PDA now and the approach is completely different to typical autism. Throw out anything for NT children and typical ASD

It takes a total rethink on everything you thought you knew about parenting and that is a scary place to be (whilst in the midst of scary events like violent meltdowns at home).

Seek support from PDA specialists (parents and professionals) because the approach is so challenging to others.

Are you on any PDA FB groups? They can be great support. Are you a member of the PDA Society for local contacts including professionals?

I'm not going pretend life's been easy. It hasn't. School based education broke down for my dd when she was 9. She has had a personal budget for EOTAS (education other than at school) since then. I had to stop going to work.

It's a long slow road but my dd is thriving. Our lives are still very different from most and I've lost friends who disagreed with the approach I follow. But my dd is a wonderful, bright, caring individual. She works as a playworker on Saturdays supporting other disabled young people including some with PDA.

I accept that in many ways having an only child made it possible to provide an more consistent PDA supportive environment because it didn't conflict with the needs of sibling(s). So I don't have advice on managing the conflicting needs of 2 dc. But I can honestly tell you that consistent PDA appropriate parenting and education does make the world of difference for a child with PDA.

[LosingTheWill2022]

And I have experienced the things you describe so do understand completely the hopelessness of seeing you child in extreme distress. I will never forget my daughter desperately pleading with me that if I loved her I'd kill her and put her out of her misery. I have held her back from running into traffic and prayed the child locks would hold as she tried opening the car door in moving traffic.
I have been through the aggression towards me and even worse, the harm inflicted on herself. Its a long hard road but it really can lead to a much better place.

[AReallyUsefulEngine]

OP I have posted no your other thread so won’t repeat my post here.

LosingtheWill2022 you cannot be compelled to facilitate EOTAS, even if that means the LA have to fund someone else to, so if you did want to work (or even if you don’t but want the LA to fulfil their duties) it is possible for you to still have a successful EOTAS package.

[LosingTheWill2022]

I find the way Bill Nasen writes really straightforward.
This is the fb page . He's written 3 books as well that deal with s presentations of autism including PDA .
www.facebook.com/123708701041972/posts/5135554169857375/

[LosingTheWill2022]

@AReallyUsefulEngine

OP I have posted no your other thread so won’t repeat my post here.

LosingtheWill2022 you cannot be compelled to facilitate EOTAS, even if that means the LA have to fund someone else to, so if you did want to work (or even if you don’t but want the LA to fulfil their duties) it is possible for you to still have a successful EOTAS package.

Thanks AReallyUsefulEngine

Unfortunately my dd's needs (anxiety, trauma and bereavement plus PDA) are such that it is extremely difficult for me to leave the house. (Global pandemic and lockdown didn't help! So still a work in progress.)

[AReallyUsefulEngine]

Losingthewill similar to DS1, he has complex MH problems including PTSD related to a bereavement, although he doesn’t have PDA he has other complex needs. Is DD receiving any specialist therapies as part of the EOTAS?

[LosingTheWill2022]

Yes we have a PDA specialist clinical psychologist as part of the package. Now funded by CCG.
It's been so beneficial. When other professionals have pushed for more "typical" approaches she has really had our backs! And is working with dd weekly.
Does your ds have eotas?

[LosingTheWill2022]

This will probably not be a popular view but if you want to salvage your family life then look into residential school for your SN child
I think most parents want what's best for their child and for some children that is residential education. It has to be an individual decision based on the needs of the child and family.

I feel so angry that the appalling lack of suitable snd timely support for families leaves many feeling they have no options

I'm so sorry you are being so let down currently @BattenbergdowntheHatches
I hope that changes whether it is residential support or suitable home support.

[AReallyUsefulEngine]

Losingthewill yes, DS1 has had EOTAS for several years now, it works well for him. It’s not perfect but then there aren’t any suitable schools so there’s no other option. I don’t think he will ever return to a school of any sort. He has a comprehensive package with tuition, therapies and other provision.

Apologies if I was teaching you to suck eggs, but many parents don’t realise EOTAS can include therapies and that they should be in section F so if needs be the LA must commission independent provision and you can enforce it.

We have EHCP but it doesn’t help and DS is being removed from school.

BattenbergdowntheHatches have you requested an early review? I don’t know if this is what you meant by “being removed from school” but don’t deregister, if DS cannot attend the LA must provide alternative provision, but by EHE you relieve them of their duties. Parents often find it easier to get support, especially residential provision, if on a school’s roll even if not attending. Crudely, it is too easy for professionals to brush DC’s needs under the carpet if EHE.

[LosingTheWill2022]

No apologies needed @AReallyUsefulEngine
Its very valuable advice and relevant to others reading too

[willthatbeall]

It sounds very difficult and that you could do with some better support. There is no way the EHCP should still be being delayed - get a solicitor or SEN advocate to press the LA. Sunshine Support are in Derbyshire and they originated from needing support for a PDA child. I have also found the FB groups for Operation Diversity and the various PDA ones helpful at times. However if I d many PDA groups won't tolerate parents voicing struggles or frustration parenting PDA children so I stay off them. My other child is now in boarding school to give them a break from home which they love - it's hard being a pDA sibling!
I have felt broken at times and often still do but I am getting there. I am fierce with camhs, GP and the LA and my child is now accessing excellent education and is generally calmer and happier. I explain to all that the priority is to reduce anxiety and this helps.

[AReallyUsefulEngine]

BattenburgdowntheHatches when you have the right of appeal following the early review appeal. SALT, OT and MH therapies can all be specified and quantified in F so they must be provided and you can enforce them if necessary. Sadly, you are likely to need independent assessments to get them included. If you would struggle to afford them contact Parents in Need who can sometimes help fund them. You can ask SENDIST to look at social care provision too.

willthatbeall from OP’s other thread they are in the middle of appealing to SENDIST.

[TTC24]

Sorry to jump on guys. I'm sorry you're all having/had a rough time.

I'm commenting to get advice on how to push for a diagnosis. My daughter is 15 months old and is definitely showing signs of autism. I'm in the process of waiting for an appointment with the HV, but I really don't want to get fobbed off. Best case would be we see if she is diagnosed and we can support her! That's all we want to do is support her in the best way we can. Again sorry for jumping on. Just a young mum trying to help her daughter get the support she may need.

[RunningRainbow]

I have dc age 10 with pda / adhd/ asd. They have a younger sibling age 8

All I can do is tell you how we have managed it. We home educate, having very early on made the choice to not fight any battles that we don't have to. Educators and Social services don't get it and I don't have the energy to teach them.

All of the behaviors that you are describing are trauma behaviors. I suspect there are loads of interactions where you find yourself saying "but she has to..." and at that point you must must stop. There are very few things which are a hard no. Yes, safety is one. But even that needs to be calm. No lectures.

The scissors, knives - that is your child trying to communicate exactly how desperate she feels. It feels that big and 'life or death'

I'm not sure how your achieve this because obviously, I don't know enough about your family life but the pace of your family life needs to change. By home ed, we have removed so many stressors from our life. And by relieving the pressure, over years, we are now coming full circle to a more busy life. My child makes me tea umpteen times a day, does chores (not because we forced them to do so until they complied but instead because they want to partake in family life as a contributor). They play with their sibling which was unimaginable at one time.

There are concessions that we didn't envisage making - we didn't expect to home ed for a start but I wouldn't change it at all. Please think about the cost of pursuing a form of educating that your child might not benefit from because the way that it is delivered is fundamentally inaccessible for your child. There are Facebook groups which might be helpful.

Having gone through a chocolate phase, they are now in a healthy eating phase - no chocolate for 4 months now, no crisps, no fizz. We had spoken to them about the negatives of their previous unhealthy diet but crucially, left it up to them. And then they made the decision when they were able. They go to sleep every night after reading their younger sibling a story. Seriously. But it took years and years of no battling over bedtimes before we reached that stage. And no, I don't sleep with my DP but it was easier to make sure one of us was up for the morning rather than both being knackered.

If I had to distill this advice down into one thing it would be "endless patience". So much of your child's behaviour sounds anxiety driven - I'm only saying this from the hindsight of my own experience.

If you want you can pm, but this isn't the sen board and I find these threads normally descend into ignorant and unhelpful advice. Oh, try finding adult autistics on Facebook too. Spectrumy. Harry Thompson. Neuroclastic. Kirsty Forbes. They might all add some understanding

[mimosa1]

OP, would your eldest enjoy boarding school? I believe there are a couple of excellent state boarding schools in your part of the world. While not cheap - you pay for the boarding component and the education is free - it's usually less than half the price of an indy, and if you can swing it financially, it might give your oldest a welcome break and you and DW some breathing room.

[oliviastwisted]

Jesus Iron that sounds so shit.

I have nothing but sympathy for your whole family for the difficulties you are all experiencing.

Have you had much in the way of parenting classes? We have had years of it for our kids with SEN and ASD and everything we have done over the years has contributed something to the table. Both DH and I have done them and they have definitely helped.

Your DDs behaviour is all communication about her inner world. I would say her self esteem is on the floor and clearly her anxiety is sky high at the same time and she is deeply deeply unhappy as well, couple that with the as effect that behaviour has on the rest of your family so I absolutely agree with other posters about getting some kind of environment that fits her needs best. That can be special school, residential etc but there is literally no way things can continue the way the are.

The more you can explore and make ok her inner world, a place that is clearly currently in complete and utter turmoil, the more peace your whole family will get. All the stuff everyone needs a child like your DD needs unconditional love, a feeling of safety and security (predictability and routine) and then a huge one probably missing with your DD due to the failings of your LA to meet her educational needs is a sense of purpose and an identity and then whatever social needs she has she needs to be met too.

It is clear from the way things are that due to the scale of her issues that might not be possible to meet with just two adults who are clearly at breaking point themselves. I really, really hope your LA start to step up this sounds so awful for your family.

[TTC24]

@BattenbergdowntheHatches oh thank you! I'll keep our appointment but I'll keep pestering over the next few years. I feel I know she has it, as does my partner and her grandparents. Thank you so much for your reply.

[UlcerativePoliteness]

Ds has PDA. I would say 9-12 was the peak, from then we decided to home educate and remove all pressure from his life. He’s now 16, we have ups and downs, parenting is still very much using PDA strategies, but it’s much easier.

What worked for me:

1. Home educating - allowing a relatively long period of time with zero pressure, doing things he wanted to do (this looked like several months of him digging and doing some bushcraft, followed by several months of him scootering and not much else). Because he was choosing to do these things, and because both things satisfied his sensory needs things calmed right down.
   
2. The Explosive Child book - basically the PDA bible. Buy it, read it, try to live it. There is a sequel called Lost in School which is aimed at schools but I found helpful as there are tables with clear examples to follow. There is also a website called Lives in the Balance - I think through here you can access various videos.
   
3. Bo Elven - similar to the above books, a series of videos on YouTube with teach a low arousal approach - vital for PDA children!
   
4. Try to keep your children separated, or at least highly supervised. Let your other dd have plenty of 1:1 time with you and your wife.
   
5. PDA Society website. There are loads of resources there, we’ll worth having a good look through it. There’s also a helpline manned by PDA parents who will understand what you’re going through and can hopefully give you some advice.
   

Things that didn’t work

1. ExH opted out of all emotional stuff which left me alone in trying to hold things together, this led to me having a breakdown - I don’t recommend this. Try to make sure you and your wife talk and are on the same page in terms of strategies and supporting each other.
   
2. Other people had very strong opinions on what we should/shouldn’t be doing. This created a lot of tension as I believed (wrongly as it happens!) that they had some valuable insight - they didn’t, they were just opinionated buggers who couldn’t stand that we were parenting in a very different way.
   

Once I got my head round what needed to be done, and accepted that this was life, it was easier. Leaving the school system and having a complete break from it really calmed things down. With ds I applied for an EHCP when he was 15 and managed to get a really good one (pm me if you want to discuss this).
PDA and school (or any kind of directed learning) don’t really work.

It’s hard, and at times feels impossible, but things can and do get better. Hang in there 💐

[Justrealised]

Hi, I haven't read all of the replies so I'm sorry if I'm repeating.

1. The ehcp should be finalised. Get in touch with ipsea or sossen. Both have free helplines and will guide you through it. Sossen also have drop in sessions for face to face advice. The LA will be delaying to save money, it happens alot. After the ehcp is finalised you have a right to appeal. It quite often takes this to get the plan adequate. You could also get a solicitor or advocate to help but you may be better off doing this after the plan is finalised.
2. Libby Hill, small talk in the midlands is a speech therapist and is very good with pda. Look her up on YouTube, facebook etc. If you can afford get her assessed by someone like her. Even if you dont get the pda dx you will get a clear document of what provision is required.
3. As part of the ehcp assessment and separate to (but if you do it as part of the timeframe is enforceable) you are entitled to a social care assessment under section 17. You can be assessed as carers and your daughter can be assessed for short breaks. Your other child could also be assessed as a young carer or as a cin in her own right. It could be that the la provide you with respite or funding for a pa so you get a break. If you ask for this as part of the ehcp assessment you can ask the tribunal to look at these sections of the plan too.
4. Don't beat yourself up, it's incredibly hard and difficult.

[AReallyUsefulEngine]

Rather than EHE which means the LA will mostly say relieves them of their duties (although a small number of parents do manage to get a PB despite EHE) it is possible to receive an EOTAS package via an EHCP that is completely child led in terms of what DC do and don’t do.

Justrealised the EHCP is ongoing because from their other thread they are mid appeal to SENDIST.

[LosingTheWill2022]

it is possible to receive an EOTAS package via an EHCP that is completely child led in terms of what DC do and don’t do
I agree. My dd's ehcp specifies eotas with totally non-directive PDA mentoring approach following her interests.

It has been life saving here.