Looking for stories of hope- has anyone's ND child got better/ easier to parent or does it just get worse?

[Dressinggown08]

I have a 6 year old DS who is autistic and has PDA. He is super intelligent, funny and can be very loving. But by God is he hard work. It's like living with an unexploded bomb in the house, I'm constantly walking on eggshells around him. He flies off the handle at the smallest thing. Has major meltdowns. Has the social skills of a much younger child. I'm permanently on edge and always sigh with relief once he goes through the school gate or finally falls asleep at night. I'm not looking for parenting advice but for hope that things might improve as he gets older? We are doing everything "right" in that he has supportive teachers at school, Camhs input, we've read every PDA parenting book going..... But I feel so low and exhausted with it all. Just looking for a hand hold and any positive stories really.

My DS didn't melt down often, but had trouble regulating emotions, and was hard work. He's 12 now, and early intervention has helped immensely. Early intervention was regular OT, Psych & speech therapy.

He's always going to need guidance, support, and emotional regulation help, and MH care, but is very well behaved and intelligent.

We've had to make a lot of changes as we go along, including a supportive private high school as the local public HS would undo it all (he'd be bullied/no support).

He's still very affectionate and needs reassurance, and it's changing as he grows. He's immature, but still going forward. It is nice my 12 year old still wants to hug me, though! He has friends & seems to make them wherever he goes.

My son is HF ASD we had many low points soling himself daily on starting school. Sleep issues forever. Separation anxiety no sleepovers no school trips holidays to different places a nightmare. Everything and I mean everything has been hard work. However he is now 22 years old we made it through school and a special needs college. He works albeit part time and he drives. We are still working on his social skills and right now independent living seems a while away but I now think it will happen whereas once I would have said it will never happen. Keep going it's all worth it.

Hi, my DS is 17 now. We don't have the PDA diagnosis where we live but he embodies all PDA features. Ages 5 through 11 were awful - he was a runner almost daily from school and he could be hard to control in school. Frequently suspended. Stayed in mainstream but didn't go to lessons after around age 13 Hung out in the SEN dept and got a few GCSEs with no formal teaching which still feels miraculous. It took a while for the SEN staff to understand him but they helped him so much and they realised that he was in fact a funny, kind lad who just was terrified of failure and deeply frustrated by the limitations of school.

We used to think he would never be able to stay in school but he stopped running once puberty hit and he had fewer meltdowns from 13 onwards with none I would say in the past 2 years. He is much calmer and understands life so much more.

He is still anxious but so much happier in himself now and good to get on with for those who know him well. He is coping at college, even in classrooms.

It was incredibly hard and I had many days when I couldn't imagine things getting better, as did my DS and everyone around us. However, there are some great people out there to help along the way and, in a nutshell, yes, things can get much better. Hang on in there.

My DS is 13 - he's much better this last year. We changed his ADHD meds and though he is also demand avoidant we took the advice about anxiety which is gradual exposure and he now copes much much better -it's like our old happy preschool child is back. Except now he can do his washing, go to the shops, go to the swimming pool with his sister, put his dishes in the dishwasher, and make the gravy.
We also think some of what we're seeing is maturity - he's not in the throes of puberty yet but his paediatrician thinks it's quite likely brain maturity helps with children like him.

I feel you and I know how rough it is. I am not a lot of help but following as interested to know responses. I think it must surely get easier, particularly with support and the knowledge.. fostering a good relationship and enjoying his funny lovable qualities (despite the horror) has got to go a long way. As hard as it can be to maintain walking eggshells, that positive and empathetic relationship is going to be a critical feature as with any parent/child relationship.

Ds1 is almost 14 with HFASD and PDA. He is much easier now then he was at your dcs age - we have worked really hard at understanding him and what causes him stress and how to minimise meltdowns, getting overtired, sensory overstimulation
-keeping everything the same where possible (eg we stopped going on interesting holidays to new places and just go to the same 2 places each year for now)
-strict timetables
-Choosing battles eg he will only wear joggers or soft shorts , lots of food textures are a no no, can’t deal with various environments

moving to a supportive private school really helped us (we are poor but all less stressed)

I think it will get easier as your ds gets older

I have 2 boys with ASD, both in their twenties one is a HGV driver and the other works full time in retail. It does get better, just hang in there - big hugs

I have two autistic DC. Eldest was not too much trouble in the primary years - not prone to meltdowns and relatively easy to live with other than lack of flexibility. Has been awful at secondary age though with terrible mental health and school avoidance. Other DC is 12 and was very hard work from toddler up - endless meltdowns, throwing things, lots of sensory issues, food issues. She has become a lot more emotionally regulated as she got older and is more manageable at home. Food is still an issue but we have learned how to manage around it. Still.have puberty to go though.... Your strategies as a parent to avoid and deal with dysregulation also improve with experience.

I’ve got AuDHD PDA DS8 (also dyspraxic) and I feel like I’m still in the trenches tbh. Low demand very much works with DS, but it’s counterintuitive and I find it hard to be consistent when trying not to make demands. He is also funny and lovable but will go off like a bottle of pop at the slightest provocation. It’s exhausting.

The main thing that helped us was getting him into the right school. He was excluded before the age of 5 from a private pre-prep, and then managed out of MS primary. Having teachers who “get it” and a litany of support staff has made a massive difference to DS’ well-being. He can access psychology, OT, SALT etc through school without having to wait for the NHS - they even have a therapy dog!

Socially he is slowly improving but very young for his age. I don’t know what the future holds, but independent living seems unlikely.

My ASD/PDA er is 11 (DS). I’m really struggling with him right now. Everything is a battle, I dread getting up in the morning as even just getting him to get ready is brutal. I’m a lone parent and have zero support with the exception of a couple of babysitters that look after him when I’m at work. My mood is so low, not helped by being peri meno. My eldest (25) is also ASD/PDA, whilst he has mellowed with age he has no job and does very little (lives in supported living) and is currently questioning his gender. I find it so hard, I hate to say this but I’ve not enjoyed my journey as a parent one bit, I feel envious of those without the challenges we face. The whole education system is a joke (I had to go to a tribunal to get my eldest into primary and the education battles continued for him). I appreciate I sound bitter but I’m utterly exhausted and just want to enjoy being a mum but the constant daily battles over everything/anything is draining and has seriously taken its toll. I’m sorry this is not a helpful response, I’ve just had a difficult week and felt this seemed a relatively safe space to offload.

It's so hard, isn't it? I'd say DS 11 (AuDHD) is definitely easier now than a couple of years ago, and the meltdowns or freak outs (as I don't think it's always a classic meltdown) are less frequent, shorter and he bounces back faster. We cope better too. I enjoy a greater proportion of parenting than I used to. I'm worried about starting secondary in Sept though. We're also moving this summer so it'll be so much change. So yeah it's hard and we have better and worse weeks but I'd say we're in a relatively good spot at the moment.
I so feel for those of you doing it alone, like Plantkiller44. Well done. You're a hero for navigating this shit show without any help. Definitely offload here if it helps, even a bit!

@Plantkiller44 sorry to hear you’re struggling. I didn’t want to read and run.

I understand exactly what you mean about feeling parenthood is nothing but a slog (and I am also peri!) I have even distanced myself from close friends with NT DC because I found the inevitable comparisons with DS too upsetting. I don’t think there is a magic spell to make it easier, it’s just about trying to get through every bloody hard day with you both in one piece. I try to appreciate small bits of progress, like yesterday when my DS was able to stay in the cinema for the duration of a film! (Only Dog Man, but still…) Every single previous attempt has ended in sensory overwhelm within the first 5 minutes.

Hang in there. 🌈

My son was extremely hard work until he started school (or maybe the 6 hours respite helped!) also once he was able to talk things improved. Now it seems to be how well supported he is in school is a massive factor. We have had excellent teachers and he has thrived and we have had crappy teachers and he has struggled (we suffer the overwhelm at home)

Things that help-

Very consistent routine
Access to things that soothe him (tv, switch) for short periods of the day
Time alone
Exercise /ops to burn off energy

I'm reading all your posts and weeping on the sofa. Thank you for making me feel a little less alone. I feel so terrible for saying this but I often wish I hadn't had a second child. And then I feel absolutely crippled with guilt for thinking this. Life just feels so hard though. I grew up in a very difficult home environment where I was in a constant state of alert, and promised myself I would never live like this as an adult. But here I am.

I have 2 ND children and I think it gets better AND worse. Because things change so much that although something they struggled with massively is better now. There's a different complex issue that comes up that wasn't an issue. I've found the best thing is to watch and listen, notice things, and then you will realise sooner that something is becoming an issue.

I also had to really look at my own behaviour to issues and see if I was frustrated/helping or making the issue worse. Finding your boundaries and their boundaries and trying to sync them. There are days where others would probably say "you're giving in" but honestly I'm the only one who knows their limits and how that is communicated and the only way I know, and I've learned, is to make mistakes, handle things the wrong way, fly off the handle.

Its all learning, there is no manual (except the book raising the SENbetweeners) so you have to learn, by doing, by picking the wrong battles on occasion.

You're doing great, you're learning your child still.

You’re definitely not alone, OP. There are lots of parents to PDA kids on here.

I love the bones of DS, but I have seriously regretted having him at times. As a toddler, his sensory issues came to light because he went through a smearing phase. Every night, I used to put him in a back-to-front onesie and sew the fastening up, while wondering what the hell I had done to my lovely life! 😂 I don’t feel like that so often now, but I still have my moments.

I do think you need to prioritize self-care as a SEN parent, and that might mean getting support with the “high alert” feelings, which are probably a manifestation of anxiety? (And if so, might DS pick up on that?) I’m very much a “fake it till you make it” person - if I exude an aura of zen, eventually DS stops climbing the walls… not easy though!

💐

My son is easier at 15 than he was from 2 to 12.

It helped being in the right special school, extensive OT, setraline and some SaLT. Us learning what he needs etc.

He still needs lots of support but, fingers crossed, meltdowns are rare now

@Vinvertebrate ha, I also had to suffer DogMan! What a peculiar film it is. Kind of excellent for ADHD maybe?

I have a PDAer who is 12 and it is definitely hard work. She is fiercely independent yet needs loads and loads of support.

She's managed a successful transition from year 6 to year 7. I'm very proud of her (and us).

On Friday night I was so tired she put me to bed. She even read me a story 😂 (she hates to read). I think it was our most PDA moment ever.

Oh I didn't answer the question. When she was 6 or 7 she was hitting us, kicking us and spitting in our faces and our food and saying such terrible things.

So yes, but from a pretty low bar and I have to not mention this to "normal" people or they start backing away.

And said "normal people" include my mum and sister and it has seriously damaged our relationship.

My family members and some very long standing friends seem to have given up on us. I really want them to get to know the new improved DS (who closely resembles the old cheerful DS) but I don't want to beg.

Ime (my own child and peers) the challenges change over time - so a particular phase and challenging behaviour is reasonably likely to pass in a few years BUT that doesn't mean that the child will then have fewer challenges, they might just have different ones in their next stage.

We've had a better few days here. I've been working so so hard on managing my own behaviour and being calm and containing. I can see how much it helps him but it feels exhausting sometimes- keeping the "happy face" on. Like you do in the toddler years, but it's just continuing. Trying to focus on how warm and loving he is when he's not feeling anxious and overwhelmed with life.