I can't cope with my son anymore.

[Cak309422012]

He is 10, diagnosed with asd aged 4/5 and most likely has adhd, odd as well as anxiety and ocd traits but only diagnosed with asd. He was signed off everything once we received asd diagnosis, have attempted to refer to Camhs but keep rejecting us. We got given a support worker but she was off sick, then on annual leave, now she's left. We are meant to get a new one but not heard a thing. There is no support.

He is hard work. He is the most defiant child you could meet, won't do a thing he's told, demanding, controlling, manipulative, doesn't think of anyone but himself, thinks the whole word revolves around him. Is nasty to both me, Dp and his sister. In fact, he makes his sisters life hell. Constantly saying nasty things to her, taking things from and threatening to hurt (although he doesn't hurt her, the threat is enough to upset and scare her!). He has no value of anything, constantly demanding money, tried to play the victim in everything. I dread waking up each day, there is no let up, he doesn't sleep and I'm exhausted. I'm really concerned, he swears all the time and seems to care to much on what others are doing, rather than himself. I'm not even sure it's all down to his asd. He reminds me a huge deal of his father (not Dp). My ex is a very self centred man, very controlling and obsessed with money - exactly how DS is buy the things is his dad has had little input in his upbringing!

Ds is 11 and he can't do much for himself like get himself dressed or even make himself a drink. I really try to encourage independence but he just screams and screams.

Despite that I've portrayed my son in such a negative light he can also be very affectionate and loving. It's like a switch! Goes from one extreme to another, often in a short space of time! I don't enjoy being his parent. He's never made parenting easy.

I believe he's going to put one of us into an early grave. My blood pressure is always elevated, get no down time.

He masks pretty well at school, holds it all in all day then explodes when he gets in! To family he behaves pretty well, again all kicks off if we see family when we leave! He knows what he's doing most of the time!

I just don't know what to do or who to turn to!

I worry that it must be my parenting but my younger child is the complete total opposite of her brother despite having autistic traits and some degree of sen herself, she is the easier child!

Honestly, I'm so depressed. He's destroyed the house this morning cos he didn't want to go school, got him to school and he acts like a f**king angel like nothing had kicked off at home this morning g and I don't know where to turn to!

I feel like I don't want to be his mum anymore. He is ruining his sisters life. She is constantly terrified! 😪

OP I have no practical advice but my heart goes out to you. Parenting is exhausting and hard at the best of times, and no-one should have to deal with what you're going through. You are doing brilliantly even if it doesn't feel like it. I also know you are not alone - I know of two friends who are going through similar things with their children, and the lack of support is really upsetting.

Have you looked at the PDA Society's advice and resources?

They have some info about the difference between ODD and PDA:

ODD is described as ‘persistent negative, hostile and defiant behaviour’ towards authority. Superficially there may be some similarities with a PDA presentation, however ODD is not an autism spectrum condition and therefore the root cause is different. Other points of difference include the fact that the more ‘social’ avoidance approaches seen in PDA (e.g. distraction, making excuses or procrastination) are not usually seen with ODD; positive parenting courses and reward-based approaches are beneficial for ODD, but ineffective for PDA; and children with ODD often appear ‘streetwise’ and are well aware of social hierarchy whereas with PDA, children are usually quite socially naive and believe themselves equal to adults.

From www.pdasociety.org.uk/what-is-pda-menu/identifying-pda/

Can you afford to get a private assessment?

@MySecretHistory he's going to be doing the usual transition days, plus extra and also transition days for children with sen in the summer holidays - not sure how he will feel about the summer holidays one though 😅

There is also a helpful resources page, note the last section about peer support
www.pdasociety.org.uk/resources/sources-of-further-understanding/

@NameChange30

Have you looked at the PDA Society's advice and resources?

They have some info about the difference between ODD and PDA:

ODD is described as ‘persistent negative, hostile and defiant behaviour’ towards authority. Superficially there may be some similarities with a PDA presentation, however ODD is not an autism spectrum condition and therefore the root cause is different. Other points of difference include the fact that the more ‘social’ avoidance approaches seen in PDA (e.g. distraction, making excuses or procrastination) are not usually seen with ODD; positive parenting courses and reward-based approaches are beneficial for ODD, but ineffective for PDA; and children with ODD often appear ‘streetwise’ and are well aware of social hierarchy whereas with PDA, children are usually quite socially naive and believe themselves equal to adults.

From www.pdasociety.org.uk/what-is-pda-menu/identifying-pda/

Can you afford to get a private assessment?

Sadly can't afford at the moment, thanks for the info though! I have been reading up about both. the support worker we had suggested odd but I reckon he fits the bill with pda more so!

@NameChange30, thank you 💕 I joined a Facebook group too!

👍 you're welcome. I suspect my son might have ASD/PDA but it's early days for us (he's 5). He is hard work and I think it'll get harder as he gets older if he doesn't have the right support.

I feel for you as it's so tough. Be kind to yourself

If you appeal the EHCP, cannot afford independent assessments and don’t qualify for Legal Aid contact Parents in Need, they can sometimes help fund independent assessments.

As others have suggested the PDA Society has loads of really helpful advice including a really detailed guide to what could be included in his EHCP to help ease the stress he must be feeling at school.

Unfortunately he will be under an enormous amount of pressure masking at school, putting up with all of the sensory, social and academic difficulties and then he is just not able to cope with anything else once he’s in his safe space at home.

Ross Greene’s The Explosive Child is also really good for practical ways to help with specific difficulties at home.

My son was like this when he started Primary school, it’s taken years of battling with the school & LA to get adequate support and adjustments put in place. Along with the changes we’ve made at home to reduce demands and help him stay regulated he is so much happier, more relaxed and less anxious now.

It’s taken a lot to get here though. You need as much support and professional input as possible. Contact your local SENDIASS team for advice, and for his EHCP review state he needs an Educational Psychologist and Occupational Therapist assessment before his transition to secondary school.

You can also apply for therapy to be provided as part of his emotional needs within the EHCP so you can fund a private therapist who specialises in supporting children with autism, CAHMS are pretty useless.

His needs should be fully understood by his new school before he starts because it’s going to be a huge transition for him and if he is struggling to cope now it’s going to get worse if it’s not managed well.

Think about things like having a safe space to go if he’s overwhelmed, being able to each lunch in a quiet place, a reduced timetable with more time for his interests built in. Communication between home and school will be key so a weekly catch up with his teacher or Senco could be scheduled so any problems can be addressed before they escalate.

I think at home to start with just have a few minimal boundaries like we don’t hurt ourselves or others, and we don’t damage things. Then take a look at the Explosive Child book, it will guide you through how to focus on which behaviours he needs help with eg being kind to his sister. You focus on one thing at a time and work with your son to come up with solutions.

I think you’ll find that the less anxious he is the less controlling he will become. And with things like always wanting money you could try discussing with him a compromise eg having a set amount of pocket money each month, or being able to choose one thing in the shop. Discuss this with him when he’s calm and not actually wanting to buy something, reinforce it before going into a shop etc so gradually he gets used to the rule. Sometimes it’s just best to avoid triggers if he’s really not coping with something eg don’t take him in any shops for a while and explain why and discuss how it could be managed with him.

There are some really good support groups on Facebook for PDA, autistic and therapeutic parenting where people will be having very similar experiences as you.

With visual timetables, if your ds is wanting to assert control, you can still have a timetable with different options for slots (I'd usually present these as cards). So, for instance, you might have a "doing something active" slot but he can choose between 2 or 3 things to do, or a "fun at home" slot where he can choose between cards showing the different activities he can choose.

Another practical piece of advice is to either use something like a slow cooker for meals, or have things that are very quick and easy to serve, so you aren't having to be away from supervising the dc at this time (you could batch cook at weekends, but I quite often serve extremely simple weekday meals - jacket potato and beans, pasta and a jar of sauce).

Try to reduce demands on your ds' self control - for instance I personally wouldn't be worrying about homework or limiting screentime closely. Dc with ASD need different things to other dc.

Can the dc's dad give you more of a break at the weekends so you can recharge your batteries?

Ask his dad to have custody .

What support is your DD getting for this constant bullying and threats of violence towards her?

Or is it all kept secret?

Have you logged with your GP and SS that your daughter is being bullied and threatened in the home?

I would do that asap.

She is entitled to a childhood and it sounds as if her life is hell.

I think you also need to start filming him so you have proof of his behaviour in the home.

You poor woman. It sounds very hard.
His needs are not more important than your daughters.

I think you need to start telling people how hellish life at home is for her.

Unfortunately - whilst it’s worth doing - my experience is most authorities do not really care that a sibling’s life is extremely difficult.

I really think it’s hard to appreciate just how little support there is for families with SEN and how you have to fight for every single bit of support. And keep fighting to keep that support. It’s completely exhausting and the system seems to be set up against parents. I wouldn’t have believed it myself until I experienced it ( and it’s been a total eye opener for me to be on the ‘wrong’ side of the system).

You have described my son. Same age, same difficulties. The money thing drives me mad! It's part of the pda I think in that not understanding why adults have money but children 'can't have any' because they don't work 🤯 I have had so many discussions, arguments, pocket money plans - makes zero difference. Also my son is unable to learn from behaviour as he doesn't care about consequences and also will not get his own food, clothes etc "because you do it". I've left him for many hours before to see what he would do and he just won't do it. Anyway don't want to make this about me just wanted to say you are not alone.

@niceupthedanceagain

You have described my son. Same age, same difficulties. The money thing drives me mad! It's part of the pda I think in that not understanding why adults have money but children 'can't have any' because they don't work 🤯 I have had so many discussions, arguments, pocket money plans - makes zero difference. Also my son is unable to learn from behaviour as he doesn't care about consequences and also will not get his own food, clothes etc "because you do it". I've left him for many hours before to see what he would do and he just won't do it. Anyway don't want to make this about me just wanted to say you are not alone.

Thank you for your reply and yes sounds very similar! I try leaving DS to see if he will give in and do things for himself but usually ends in screaming! The money thing is a nightmare, he doesn't seem to get we don't have an unlimited supply of money! I've had to hide my purse (naff all in it anyway but has helped himself to my card before!).

@NeverDropYourMooncup

What support is your DD getting for this constant bullying and threats of violence towards her?

Or is it all kept secret?

It's not a secret at all, I'm very open about it. It seems no one cares as he's not actually physically violent but words and threats are just as bad! The school are keeping a 'close eye' on her but she has sen herself and probably masks throughout the day 😪

As a family we do a lot of things separately now. For instance I will take DS out and dp will take Dd out or vice versa. Dd will often spend the whole of a Sunday at her nanny's house which she loves. I try and make her life as good as I can 😪

Please do look at PDA.
Its becoming much more widely recognised and understood that the PDA child needs approaches different from both NT parenting/teaching and typical ASD parenting/teaching. It's a hard path but much helped by understanding what's going on from the child's experience.
I really recommend The Autism Discussion Page on FB and the 3 books Bill Nasen has written. He looks at the different ways ASD may present including PDA

www.facebook.com/123708701041972/posts/2488861191193366/

I could have written exactly the same 25 years ago about my son. Although we had no 'diagnosis'. Never offered any help or support at all. But to be fair, I really don't know what they/anyone/me can do? Son, now 34 is supporting himself (HGV driver which terrifies me!). So not as much contact, but an eternal worry.
The masking is so difficult as you begin to doubt yourself....at school parents evenings we were talking about totally different children.
Can't offer much help, but total empathy.

Hello. I came on Google, I can’t cope with my son either. He’s 8 years old. I’m at my wits end. Life is a constant battle on a daily. I feel I have no where to turn for help. I’m so low at the moment I feel suicidal, it’s in my head. I just feel not good enough as a parent anymore. I’m getting it at all angles, from my family. They act like my sons a criminal. The amount of parents that have shouted at me at parks. He was diagnosed with autism 2 years ago. I just feel like yourself, no where to turn.

My son 8 years old, was diagnosed with autism 2 years ago.
it’s hard on a daily. He can be so demanding and at times violent. I have no support from family, have no one to turn to for rest bite. It’s constant. Iv been on courses and worked along side his senco, he’s now at a placement to help regulate his emotions. Iv put 100% love and understanding into his childhood. I also have a 14 year old, who was a joy to manage and easy smooth ride through school and home.
I just feel like a bad parent, I’m constantly looked at as one, the amount of other parents that have shouted at me and called me a snowflake, I need to displine him. When I try to it ends up in a war! He’s so stubborn and hard to manage.
im at my wits end with it all, Iv been having bad thoughts of sucide. I just don’t know where to turn. I pray every night for peace and guidance.
his schooling hours have dropped to help him regulate, being 10-2pm. That’s been like that since sept 2022. I can’t work full hours, I’m constantly on edge and I feel I’m loosing myself.

Can you call the safe guarding team at local social services. Just say you can't cope. I am sorry you are going through this x

Thank you for your comment. I feel I’m going to have to do this. I’m exhausted. Have very little options in coping