Is it our fault? Asd and PDA

[TheEveningReport]

Hello mumsnettters,

We’ve been on a rollercoaster over the past 18months with my asd pda 6yo DS. He was diagnosed last month. The behaviour was apparent in reception (sensory differences, school reluctance) but really ramped up halfway through year 1. He’s now in year 2.

He hates going into school, it would be called EBSA I suppose but I’m not sure if one has to get a diagnosis for that? Tears, anger and aggression, begging and bargaining not to go. When in school he’s ‘fine’ then when he’s at home it’s…well it’s hell.

We used to have good times as a family, and he would have good days where he was content. He’s always had meltdowns after school, but since Christmas he’s been severely dysregulated. I can walk into a room and get a garage of abuse. He’s started thumping me when he can reach me. He’s awful to his brother. He destroys the house. He’s always on the verge of tears or rage. He’s similar with his dad but I get it worst.

Wtf do we do? We already live in a very low demand environment. I’ve made our front room into an occupational therapy room. We’ve tailored his clothes to his needs. We’ve got the pets. We’ve done the courses. I listen to the podcasts. School are making adjustments. We separate the kids as much as possible to limit any over stimulation for him and to give his poor brother a break and some semblance of calm and normality. And we’re still struggling so badly.

It’s like he hates me, I can walk in a room and say nothing and he’ll spit abuse at me, then he’ll want cuddles at bedtime, which I give. I rarely shout, I’m mostly calm but admit I do reprimand him: I’m reaching my limit. I’m already on anti depressants, I exercise to help with the anxiety, take all the supplements etc and I am still so so depressed. Husband is the same.

Underlying it all is this fear that it’s just us, we are doing it wrong. I always thought it was school that was causing it. There’s no doubt it causes him distress but actually, he seems fine there and comes out happy (is it just masking though?).

Help, I don’t know what do to 😢.

It isn’t your fault and DS doesn’t hate you.

You don’t need a diagnosis in order to have EBSA (or Emotionally Based School Non-Attendance EBSNA). How much is DS managing to attend school? Do you think he is well enough to attend at all?

The appearing ‘fine’ at school and exploding at home is known as the coke bottle effect. It signifies DS isn’t fine in school. The school just isn’t seeing it or they are, but aren’t recognising the signs for what they are. There are unmet needs at school. If school was easier, home life would improve.

Request a meeting with the SENCO.

Has an EHCNA been requested?

Has DS had a home OT assessment?

Do DS’s share a bedroom?

Hey OP, I could have written this. Y1 was when things unravelled for my AuDHder - Christmas and January of that school year were some of the worst times we’ve ever had.
Things got better, and now worse again in Y5.
I felt similar in that after an hour of destroying the house before going, DD seemed better for going to school. She sure isn’t happy at home. But now she’s older it’s becoming clear that she deteriorates when at school, and I do think that’s masking - school can now also see how low she seems there.

i should add we and they are bending over backwards to do everything, lower demands, etc, etc.
All I can say is ring every bloody service you can and say how bad things are and keep going. We’re finally getting seen by CAMHS. I’m looking at private psychiatrists too which we can ill afford but so desperate.

They do say PDAers are unlikely to manage the school environment.
my niece has ASD/PDA and an EHCP and already agreed a 4 day week with school as 5 is too much.

I am desperate not to lose my job but I am starting to feel it may be the only option if the house is a war zone and she’s barely attending anyway.

sorry I couldn’t be more help but sending solidarity. I hope the SENCO/SENDIASS others can help xx

Oh gosh OP I really feel for you. I really do know how this feels you can probably search my posts but since 2 people in real life guessed me on mumsnet now I’m forever changing my user name.

We totally have a classic pda child. What really annoys me is parents that assume ASD with demand avoidance is similar. No it’s not. Do you have anyone who is understanding in real life?

Did you cause it no. However I totally think it is genetic (I’m a believer in it and I think I’m on the milder side but husband is a classic ASD so 2 combined plus a boy and it’s boom).

We literally spent tens of thousands trying to make school work, EHCP, 1 to 1. Unfortunately the school would not be flexible for the child so it all ended very quickly. Which gave trama (which I necessarily didnt believe that could happen but when you see your child so young and depressed it’s so sad)

Now no school and after several years of recovery I’ve got my child back. I know the child limitations and equally the child understands how the mind works. Age has been a benefit.

I think younger years very difficult- we had it from age 2 very strong for 6/7 years - divide and conquer as a family. Don’t expect anything. I’ve spent so much time in my house and haven’t gone out whilst the other siblings did (we was housebound over a year) lower your own expectations. Go out as a single person / a shop/ coffee or with the other child. Appreciate that th total family might not be possible

My kid doesn’t want meds. Appreciation that days are up and down depending on anxiety / mood / sleep

You will all get there and I think time is the healer.

Good luck it’s so hard honestly I can’t even express how hard it was.

If your fighting to go into school don’t push the child. That was my mistake. As more resistance equals a longer recovery

Plus all the stress of EHCP / tribunals / talking to the dicks in the LA etc I think the easiest option and probably more child friendly is to HE / pull out of school (which is not something Id ever want but sometimes the stress fighting LA / tribunals / admin etc verses outcome is really not worth it)

Try to make time for you even if it’s just a TV show for 30 mins. Get a couple of Sen mummies for your sanity (Facebook I met my bestie - 😬 - my other friends just wouldn’t understand at all)

School and pda doesn’t work (as schools won’t flex their rules to meet needs even if you have a bright child) however finally I accept no matter how much cash you through at the issue pda and school doesn’t work.

Take each day as it comes - pda is an invisible disability and it’s really hard for the kid 😭 (obviously for everyone else who is supporting them).

The child would do it (live like a NT without all the issues) if they COULD. However they can’t and acceptance from everyone will speed up the process / get enjoyment back into life (and I’m not saying you won’t accept it but I was always trying to challenge it and go out for family things etc)

but pda is exceptionally difficult for everyone. You have to do what floats their boat

Dont use sendiass they are funded by the local LA (so slightly corrupt)

Ipsea look up the website.

noise cancelling headphones at home as been very helpful if your child is sensitive to noise - try and understand the triggers

N fisher is a good person to look up and she does webinars

Good luck OP you will get there x

Also look up the pda society x

Also, don’t believe teachers they are very very limited understanding of ND / ASD let alone pda which is complex. A few hours on day courses and they think they understand it 🤣 your child will able to go under the rador for teachers with 20 years experience.

Also senco dire. You will need to educate yourself Ipsea. Everything in emails to the school this is evidence / dr surgery/ anything and everyone who see your kid emails afterwards.

Dont be on the school side (as you think they have the child’s best interest 🤣) . The kid will be masking. Always trust your gut and your child x

I second being careful with SENDIASS. Some are good but too many repeat the LA’s unlawful policies.

One thing to note, pursuing an EHCP doesn’t have to mean pushing school. It doesn’t have to mean school at all. There are other options. From the child’s perspective, that can look like EHE.

Thank you so much for your replies, I was in a really bad place when I posted this. I’m sort of numb now. I’ll get back to everyone once the kids are asleep.x

This somewhat similar thread was posted over the weekend and you may find some useful tips on there.

It's not your fault - some children are extremely hard to parent. Hang in there.

www.mumsnet.com/talk/parenting/5477166-i-dont-want-to-be-a-parent-to-my-child-anymore?utm_campaign=thread&utm_medium=app_share