PDA I'm not coping.

[notcopingcup]

I'm not coping with my 5yr PDA boy. He's not diagnosed but clearly pda with some autistic traits when disregulated. School are not coping, they say he should settle by the time he is 7? How do we manage until then? I did his homework with him after school with lots of coaxing and fun but it must have been too much as he ended up having a meltdown and whacking and kicking me. I don't know how to deal with this and it was a disaster. He just starting slightly reduced hours and I said I'd try school work at home (he's very bright but won't/can't do anything he's supposed to). I've no help, Nanny's leave so quickly and his dad is clearly PDA himself so while he is good at the fun bits he isn't great at the actual hard work of parenting. I just get all the crap and abuse of parenting and none of the fun. I'm just not cut out for this. I miss my older child and normal parenting with them as I just firefight with my youngest the whole time. I have no idea how to cope or get out of this mess.

I’d suggest quickly asking school to get the LA involved and start the ehcna process so you can explore different schooling options. Mainstream is unlikely to work

We had an educational psych assessment, she's given loads of advice. Everything she said was accurate. I think the days are too long and too much with not enough play. How am I supposed to have a life with home schooling? Surely that will be a disaster with far, far worse consequences.

My son would not fit in to the special ed schools, his school agree. There's nothing in between. They are doing all they can. I've no idea what to do, there is no such thing as a forest school that gives an elite education that his intelligence needs. I am absolutely not a teacher and desperately need the break him going to school gives me so I can manage when he's at home.

Have you looked at the PDA website? It has loads of strategies and their PANDA model should help.

As far as I am aware, PDA is a subset of ASD, not a stand-alone diagnosis. Also I don’t think you grow out of it by 7 as there are adults with PDA, you probably learn better coping strategies as you get older which helps.

Is school putting in place the strategies given by the Ed psych? Has school applied for an EHC needs assessment?

Has DS been referred for assessment?

I second requesting an EHCNA.

Why is DS on a part-time timetable? Part time timetables should be short term aimed at reintegration. After that DC should be in school full time or alternative arrangements made as well or instead of part time school.

You do not have to home educate. If DS cannot attend school full-time the LA has a duty to ensure a full-time education is received. Parents often find it easier to get support when their DC remains in the system. If you EHE the LA will say you are making suitable alternative arrangements. With an EHCP you could also look at an EOTAS package.

Some people find the explosive child book or Yvonne Newbold’s resources helpful.

Have you had social care assessments? A carer’s assessment for you and an assessment by the disabled children’s team for DS.

The EP sounds sympathetic and possibly informed if they are making astute observations that you agree with.

See if you can get the EP to help you explore options with the school and LA.

I'd suggest you ask LA to provide PDA-specific alternative provision for half a day via a specialist provider at home, and half day in school.

Providers who understand PDA are SenSe Learning and Wildheart Foundation. They have trained tutors and learning assistants who come to your home and do learning through play, low demand stuff.

Don't try and "teach" him yourself, it will kill you dead and it may push him towards entrenched avoidance around learning.

Pedal in the opposite direction. No/low demands. Follow his lead, and go with whatever his own interests are. Hold things lightly, learn how not to push, how to acknowledge and let go of your own (perfectly natural) desire for him to be "educated".

I hear you about missing your older child. Please know that parenting a PDAer can get easier when you find what works. You might have to turn your household and expectations on their head, and life won't look how you planned, but I promise you life for the whole family will be better when you find what works. It will be ok.

Also, buy this and give it to school - it's a Godsend

www.amazon.co.uk/Teachers-Introduction-Pathological-Demand-Avoidance/dp/1787754871

Thank you, I've read everything on all the pda websites. I was having a particularly bad day, at home we are pretty sorted. I'm struggling with getting the school/education right but I guess we are at early stages.

I know ASD is for life, I just don't use it as people don't believe me irl as my son doesn't fit their mental model of autistic. I've been told his intelligence and social skills will help him regulate more by 7. I can see he comes from a long line of very successful PDA'ers who are getting on very well in their life. Lots of help describes pda as not washing, being violent and staying in their rooms on screens but this isn't my family experience. The adults who all have PDA are thriving business leaders who you wouldn't see as having a disability. Think Elon Musk!

What is the ehcna? As assessment to get an ehcp? What is this for? He has all the help without it? He's in an independent school, does that matter? I also don't understand stand what the diagnosis gives? £3k to say yes, he has ASD with PDA profile? Then what? We already know.

Thank you, I've ordered some.

It's not really part time just finishing slightly early/late on a couple of days. It made all the difference yesterday. We could breathe and have fun instead of just getting through tasks until having to get enough sleep to get up the next day and start again!

What would a social care assessment do? I don't think we qualify for any help. What would a caterers assessment do? I am one but I don't think I'd get or need a payment of anything.

Thank you, I've not heard of any PDA specific providers for home. I'll look at these. Everything I've seen is for children who have learning disabilities which are different to our needs, it isn't really a fit for my son.

An EHCNA is the needs assessment you first request as part of the EHCP process. An EHCP is a legal document that sets out a child’s needs and the support they require. You can still request an EHCNA when DC is in an independent school. It isn’t related to diagnosis, it is based on needs. Your posts indicate DS needs more support than he is currently receiving.

Diagnosis is separate. A diagnosis can help DS (and others) have a greater understanding of himself.

Social care assessments would look at the support DS needs and the support you need as a carer for him.

But what support? They don't send Mary Poppins do they? I have staff, they don't stay. The school are doing everything they can. What else is there? What end point am I looking for? I don't understand what the goal to shoot for is? Sorry to be dim, I just don't get it.

You may have staff, but it is clear DS’s needs currently aren’t being met and he needs more support than he is currently receiving otherwise he would be able to manage better at school and you wouldn’t be posting here saying you and school can’t cope.

An EHCNA is the route to that support. The EHCNA can highlight what support is required. An EHCP can provide whatever support is reasonably required. It can provide an education that better meets his needs, including a bespoke EOTAS package if that is what is required. Including support DC wouldn’t otherwise receive such as therapies e.g. OT, SALT, MH therapies, 1:1, therapeutic mentoring, AP…

The school is not doing all it can otherwise they would have already requested an EHCNA.

Social care assessments can provide respite with someone who is trained and experienced in supporting DC with additional needs so they don’t just leave all the time.

Don't believe a pda will suddenly get better age 7 😳
My 10 year old is getting harder by the day despite the support given.
I'm experienced with asd but by heck the demand avoidance is a whole new ball game.

Is private an option with more sport incorporated into the school day?

@notcopingcup it’s been a year - just wondering how you are? X

Ah, what a funny coincidence you’ve asked today as I was just thinking this afternoon how far we've come and how I’d had such a super day. My son was off-rolled from his independent school, received a diagnosis and after a long battle for a school place (no such thing), EHCP and funding (received but useless without a school) I binned the lot and am home educating. We are slowing finding groups we love, and additional tutors that are supportive and fun. I mostly do the academic work which he’s now racing through. He enjoys sports, piano and farm/forest groups and we love waking up when we are ready and going to parks and exhibitions in the quiet school week. We travel a lot in term and have support from a teacher when she’s not working (half term/Saturday's etc). I’ve found an excellent babysitter to give me a rest. I think the key has been finding support that fits in with us, even if they work within this specialty some just don’t get it or still judge. I have to say I’m finally happy after a really tough year and I have no worries about my sons future, I’m sure he’s going to be highly successful like the rest of his family who are all undiagnosed pda. Ditching school (not education) has been the making of him and I’m so glad I/we got the shove and have been brave enough to home ed.

@notcopingcup so pleased for you both that’s lovely to hear you’re doing so well :)

An EHCP isn’t useless without a school place. If it is inappropriate for provision to be made in a school, there is EOTAS/EOTIS. If at any point you decide you no longer wish to EHE, you can pursue EOTAS/EOTIS.

I tried to persue eotas, in order to do this I'd have to see him fail in a state placement which I wouldn't do. I can go straight to court (at my expense), I would win but what does that get us? Eotas placements here are not what I want, term time, early starts, far away and from my observation disabling not empowering. Maybe my son is his own anomaly - no one suggesting the placements has ever met him. The availability is too high needs to be his peer group or he's put with deeply disturbed children from severe neglect or trauma and I do not need the influence of negative behaviour learned from lives vastly different from our own. I'm sure he'll join formal education again at some point and the ehcp will still be there but for now it's given us nothing. The SEN care for pda is diabolical, so disempowering. I've taken a massive hit to my entire life but I think, with help from hand selected babysitters, teachers, tutors and home ed groups that my son's doing the best he can but it's with no thanks to the local authority education system at all.

You misunderstand EOTAS if you think DC have to fail in a state placement first or it can only be term time, has to involve an early start, be far away, disabling or involve any placements (by which I think you mean alternative provsions?).

Yes, many have to appeal. That doesn’t have to be expensive. The vast majority of parents don’t have representation. Evidence is required but if parents aren’t eligible for legal aid, which can cover independent assessments, Parents in Need can help.

The eotas provisions like swimming, horse care (riding not allowed here but is available in other counties) etc only had early times. And they were only term time. I've spoken to many locals who have been refused EOTAS. Im damn sure I'd get it but what for? I can just book my own lovely people. Why involve complications and caps on standard? We were paying for state education, now I'm paying for bespoke home ed. I hoped there would be 'professionals' but I'm not impressed at all.