I can’t parent my PDA autistic son

[mumneeds]

Just as the title says. Both my husband and I are struggling. We are mentally drained. We have a neurotypical younger son too. The PDA child is 9.
He is becoming more rude and difficult. Tearing the family apart. Horrible to his sibling.
I don’t think we parent him right to be honest - there’s so much you have to think about regards lowering demands etc and I don’t think we do it right. It’s so difficult to change things that naturally come to you

It’s putting such a strain on the family. Don’t know what to do anymore. I am not cut out for this.

What support is DS receiving?

Does he attend school? If so, what support do they provide? Does he have an EHCP?

Has DS had an OT assessment?

Some people find the books The Declarative Language Handbook and The Explosive Child and the Out of Sync Child book useful. Some people find non-violent resistance resources helpful. Have you been on any PDA courses?

Do DC have their own bedrooms?

Have you had social care assessments? A carer’s assessment for you and an assessment of DS’s needs.

There may not be anything suitable, but it is also worth looking at your local short breaks offer.

For your younger DC, have a look at Sibs and your local young carers service.

He Attends school. This last year has been difficult though which has lead us to be able to obtain an EHCP. The funding level is just being agreed but it should be a full time one to one.

never had an OT assessment although is something I have thought about doing recently.
I read so much and I take it in but putting anything into practice in the moment is difficult. We can do it sometimes but eventually the cup overspills. We have done no course specifically - I just read a lot.

yes they have their own bedrooms and we give them one to one time. We also have hands on grandparents who help and give them one to one time too.

no social care assessments. I’m not sure what would warrant this?

Our youngest is currently having play therapy

thanks for all the suggestions.

Focus on the provision detailed, specified and quantified in F of the EHCP rather than the funding. That way the provision can be enforced. Is full-time 1:1 in F? What else is in F?

An OT assessment could have been part of the EHCNA. If you have to appeal the EHCP’s content, it is worth thinking about an independent assessment.

It is also worth looking at a home OT assessment. That will help look at making the property safer and better meet DS’s needs.

If DS hasn’t had an OT assessment, has he had a SALT assessment?

I would look at a PDA course. For example, one of PDA society’s courses or one from PAST.

There is more information about the role of children’s services for disabled children and their families can be found here.

I am confident section F is fine. We had someone check it, made changes and we are happy with it. He is at a fantastic school with a brilliant SenCo. They have agreed to funding that equates to 32.5 hours.

I know an OT could have been part of the EHCNA but the council didn’t do one just EP. The EHCP is thorough enough for his needs currently and we will revisit at the annual review if needed.

I have just referred myself to NHS talking therapies

If you think OT is required, I would appeal now/when you have the right of appeal if the LA hasn’t yet finalised rather than wait for the AR. That is because appeals being registered now are coming back with hearing dates in 2028. If you wait a year for the AR then appeal, you are looking at a long time.

I really would focus on F rather than the funding.

I am not convinced OT is required. He is PDA profile. It’s a different specie I swear. He needs support at school from someone who understands PDA.

I just need a big glass of wine. And I haven’t touched alcohol for 11 years. No idea how…

its obviously summer holidays, we’ve spent 2 weeks away already together abroad, throw a couple of birthdays in. I think we are all just overspilling

doesn’t take away from the fact that parenting a PDA child is not for the faint hearted

It doesn’t have to be one or the other.

OT is very helpful for many PDAers.

Training, qualifications and experience of staff (with job titles specified, not just woolly ‘staff’) at school can be included in F, is it?

Is it possible you need to have some absolute downtime? My 8 yr old needs really low demand to function well. To the point that some days he dresses himself for school (aside from socks, he can't abide socks) so I do thaoe but other days I need to let him watch a video or play a game while I dress him and if he says he can't dress himself I've learnt to believe him because if I try to force it we will gVe an hour long meltdown.

Some days off his own back he'll try new foods, actively ask to try things, other days he'll only be able to tolerate cheese sandwiches and carrot sticks.

PDA seems to give a really variable child day to day and requires this constant hyoervigilance for which level fo capability youre dealing with on that day. For us we have managed to reduce from multiple daily meltdowns age 5 or so to one or 2 a week. We rarely get better than that but it's so much calmer.

Reducing any unnecessary demands let's him manage the demands of attending school and doing a few specific inclusive sports clubs. Sometimes though it has started to mean a total duvet day every week or 2, where we let him lounge in jammies and carry round his duvet and eat on the couch.

Our 5 year old has always been our calm child but has also just been flagged at school with some autistic traits and to be honest when spelled out they re all things she does at home too. But she's totally different, it's shyness, anxiety and inability to speak out when uncomfortable which for us is just much more manageable albeit no nicer for her.

@Velumental thank you for your helpful post. You’re so right that PDA gives a variable child - you don’t know what you’re going to get. It also goes from 0 to 100 in a second.

maybe I need to incorporate a duvet day - does he just watch tv all day?

he loves his sports so does a lot of clubs which he wants to go to out of choice. He eats really well.

At the minute I am struggling with the rudeness and him calling people idiot or putting people down all the time. He’s so disrespectful. And I don’t know how to deal with it or what’s causing it. I said people, he’s not like it with others, it’s us and his younger brother.
He’s at an age of pushing boundaries now too and hormones start coming into play … but I honestly sometimes sit and think is this PDA or are you just being an arse

Look up equalizing, that's what the mad insults are about. We do a lot of very neutral toned 'thats not kind, we don't talk to people that way' because if you bite back it escalates. Where we dotn tolerate is him insulting his wee sister because she's too young to be expected to understand or withstand it so we immediately separate them which he hates because he actually really adores her. But it does stop the insults.

Duvet days are new for us, they involve not forcing getting dressed, or leaving the house even though normally that's be a recipe for disaster. We always get out for something even later on, either a dog walk or to go hit his tennis ball off a wall at the park or a bike ride but on a duvet day that hour of exercise would likely be the only time he leaves the house. Otherwise we let him draw, read, game, make blanket forts, drag cuddly toys round the house, make potions, whatever takes their fancy with little I put

Yes I have read about equalising. I need to learn to pause before reacting. Also have a calm one liner to say and walk away.
i have a neurotypical younger son so working with the different dynamics is so difficult. He is horrible to him sometimes calling him stupid and idiot and putting him down. And our younger son is so kind and lovely. I feel sorry for him for getting the brunt.

I am sure if I let him he would sit and watch tv all day if we said you can do what you want. Or sit on iPad. Then you just get the fall out of that.

maybe when he’s back at school he will be better. Back into routine, doing clubs he enjoys. He will also have a one to one for part of the school week and core subjects so this will help. He had a really tough year last year at school.

i feel like we are just in a spiral of dysregulation from everyone at the minute.

we are actually splitting them up next week and giving them one to one time which I hope will fill both their cups