Sign In

Please sign in using the log in form at the top of this page or click here

Not a member

You need to register before you can start a new discussion or comment on a post.

Click the button below to go to our forum registration page.

In this Discussion

Welcome to the PDA Society Forum. Please take time to read the 'Forum terms and conditions', which can be found via this webpage:https://www.pdasociety.org.uk/terms-and-conditions and also in our NEW Forum User Guide: https://www.pdasociety.org.uk/forum/forum-users-guide-created
Messages in the 'General Discussions' category of the forum are visible to all internet users. You are therefore advised not to post anything of a confidential nature in this category.
Welcome to the PDA Society Discussion Forum. Please read our User Guide for more information and contact forum@pdasociety.org.uk if you would like to join one of our closed Member Forums for registered members only.
Pls help me
  • Kallie79
    Posts: 20
    Hi
    My son is 9 and I've had my suspicions he is PDA since he was around nursery school age.
    He does have anxiety issues but for a long time now his behaviour has been extreme and I'm sat here crying my eyes out.
    The school are aware of everything. I have a meeting lined up this week with them.
    I have been to CAMHS twice now. All to no bloody avail.
    I've been to three different play therapists. Nope. Didn't work.
    I am on my own and my mum tries to help but she lives 50 miles away from me and she's just as confused as I am.
    He's been refusing school for a while now. Goes into total meltdown some mornings but I always get him there.
    Bedtimes a nightmare. He can't settle and often becomes violent and spits on me. He tells me to go and kill myself and that I've to hurry up and die of cancer. He's also tried to strangle me.
    I've asked and asked for help.
    Please don't judge me . I'm trying my best.
    Can anyone please please help me??
    I plan to take him to the GP and CAMHS again but I know this could take ages and I'm so exhausted and drained with it all.
    Sorry for long post.
  • SGCmum
    Posts: 78
    Hi Kellie. That sounds so hard, but you are not alone, and no one who has a child like this will judge you. We all have our really low days, and you will get past this. There are no magic answers, but lots of things that can help bit by bit, and it is worth googling all the things you have said to look for previous threads. There are certainly some about verbal and physical abuse that I have seen, or started. As i said, other people are experiencing similar things and you are not a bad parent. The fact that you are trying to find answers shows you are a good one. I have recently found my daughter has lots of sensory issues, and this can make a difference to how well she is able to cope with demands. I have started pushing down or her body, top to does, when she is in bed, and it gives her the feedback she is missing. She really loves it. I think it helps her to settle at night, although I prob could do more if it. She also likes a bit of pretend physical fighting, again I think because it gives her the feelings she craves about where her body is. I find it helps her to settle at night. Your son may not be the same bit it's worth a try. Good luck.
  • Kallie79
    Posts: 20
    SCGmum, thank you so much for your kind words. I'm trying to get as much help as possible and as I say the school know everything. Yes, my son is the same at bedtime he needs me there till he falls asleep and the constant reassurance of a hand on his back. I was going to get a weighted blanket but they're not cheap. It's all about finding what triggers them or helps I guess isn't it. Thanks again.
    K
  • MarSet
    Posts: 38
    Hi Kallie, Two most important things are don't ever think of yourself as a bad parent because you certainly are not, your a strong person with a seemingly impossible task on your hands and its probably caused you to suffer from some phycological issues. We dont always recognise them until we are forced to look but I've got depression/anxiety for my troubles I already had PTSD from my childhood and an abusive father Secondly your not alone, there are lots of discussions on the forum the deal with the issues your having and there are lots of useful tips on dealing with things. There are a lot of lovely helpful people on here ready to offer help/advice.
    My son is 13 but like you we have been having problems for a long time, I first started to suspect when he was at nursery. We've only just managed to get camhs on board after trying for years so were finally on the diagnostic route. Unfortunately there are no easy answers and ive found with my boy if I do find something that works it only works for a limited time then its back to the drawing board.
    He's constantly telling me to go kill myself or I should die alone in a hole, his latest was "I should cut my thought and die as that's the best place for me" and it does hurt and its bound to because you love them and your life seems to be constantly about them. I find the hardest thing to deal with is the constant shouting foul language.
    Mark

    I just wanted to add, Im 51 years old and I cry at least once a day everyday its a release of frustration and shows me that I care enough.
  • aliveit
    Posts: 68
    Hi
    Some of my first posts resembled yours, some still do.... i cried so much that i actually got dry eye and had to put artificial tears to stop the constant eye infections!
    A year post diagnosis, which was difficult to pay for, but not impossible, and there is a difference. But i understand that not everyone can go down the private root, and just find themselves on their knees begging for some help from somewhere.
    My son is also 9.
    We live in France and for help with sensory issues, going swimming was suggested. Its true, on holiday last year, our boy was obsessed with the pool, but it did calm him as long as we didn't try to force him to do other stuff. Luckily, a rule of the holiday house was no swimming during siesta hours, so we got around it this way.
    Things have been deteriorating again in our house , so we are taking him at least once a week. We also got a soft indoor swing for 20 euros at ikea(order on line) to hang in his room if you have a sturdy ceiling or tree outside. He will sit on it for homework and bed time stories and most other times.
    He also takes propanolol. Its a beta blocker to calm his heart rate when he gets anxious or angry. It definitely doesn't stop the meltdowns but calms their proportions somewhat. That plus adapting parent techniques and ideals ( which is often the hardest to do).
    Hope you find some concrete help soon but don't hesitate to use this forum or pm.
    Alison
  • ceebrux
    Posts: 2
    Hi
    I totally understand where you are coming from. I cry most days too. My son is 11 and got a diagnosis of ASD last August after I managed to get school to do a referral. I have known since he was about 2 that he had difficulties but nobody believed me-not even hubby. You would think getting a diagnosis would have made things easier, but no. I did all the courses recommended but the stategies are not working so I suspect PDA. Have tried giving him more control which works for certain things. His main issues are sleep and school. He takes 3 or more hours to get to sleep then is exhausted the next day. We are just trying a new medication for him. He started secondary school last September and has missed a number of days through exhaustion, he masks all day at school which is exhausting for him and school dont see a problem. He also doesnt see that he masks and has high anxiety levels. I feel like I am making it all up. Family have basically turned there back as they think I should be stricter but that just creates meltdowns. I have managed to get a priority appointment with CAHMS for next month as I am concerned about his mental health. Hes started not eating properly, losing weight and some days he withdraws. Its heartbreaking to see and I have no support or anyone to talk too. Hubby works away alot of the week and things are not great between us. School have now said if he misses 5 days in the next 5 weeks we will get a fine, all extra stress. Some days I feel like im going mad and doubt what I am doing is right. Why is it so hard to get people to understand the difficulties the child and parents have. Reading the posts on here makes me realise im not on my own. Hope you get the help for you and your son.
  • June67
    Posts: 689
    Hi ceebrux, we believe you; most of us have been through the same issues of others denying that there is a problem beyond our parenting skills, especially as many of our kids mask at school (once we manage to get them there) and appear 'normal'. Husbands who work away lots often can't see the problem or are to tired to deal with it all it often takes them a while to catch up with what we are seeing.
    With CAMHS you have to keep pushing, explain your concerns about his issues in detail and let them know the impact it's having on the rest of the family too. Many areas still don't recognise PDA as a distinct form of ASD that requires different approaches so we still have to tick their boxes on using rewards and sanctions, visual prompts, charts etc but some of these can be useful if tried in the right way.

    Try not to worry about the school's threats over fines they might carry it out but you can point out that as a diagnosed Autistic person he is entitled to support and reasonable adjustments as he has a disability. If he has high anxiety it is still and illness and should be met with as much understanding as any physical illness. Try to get a letter from your GP explain this which should cover the school if they feel his absence is not authorizable. Keep communication open as far as you can, the school removing the threat of a late detention helped give my PDA son the confidence to try, he still has loads of rituals to help him through the getting up and on the way to school but we do manage to get him there mostly on time most days now. He is about the same age as your son and was also diagnosed this summer after many years of struggling to get people to take me seriously.

    Try to think positively about all the good things you have done for him; noticing he has an issue, fighting to get some form of diagnosis and recognition, trying to get him to school each day and succeeding sometimes. The transition to secondary school is a huge change in his life and there could be many things that are causing him stress, from the uniform to the building, the pressure to do homework if you can work out what they are you maybe able to help him come up with strategies to cope. It's hard one thing at a time is all you can do.
    Sleep is an issue for us here too, he used to wake frequently in the night with nightmares and I used to spend most nights sitting on the floor by his bed wrapped in a blanket dozing as I could or reading the same bedtime story over and over, just to let the rest of the family get some sleep. Then he decided he wanted to nod off on the sofa watching videos on his phone and be carried half asleep up to bed where he would sleep through most nights. A bit of an issue now he is almost as big as me, then one night whilst waiting for him to nod off I fell asleep and we slept on our respective sofas. Now we sleep in the front room but at least we sleep a bit, not ideal but ok for now.
    Please make sure you look after yourself and your own mental health as well, it's ok to cry and let your feelings out if it helps rebalance you. I used to cry all the way to work after finally getting him to school just because the stress of it was so exhausting. Colleagues were great at giving me a few minutes space to gather myself before I got on with things and I could get that bit of 'normal' life that working part time gives me. I'm lucky I have flexible hours and an understanding boss who gets the issues, he gets a loyal employee who does her best whenever she can.
  • ceebrux
    Posts: 2
    Thank you June67, it makes a difference knowing its not just me. Hoping CAHMS can help all of us.
    Hi Kallie79. Sorry, I didnt want to take anything away from your post. How are things?
    Just wondering why CAHMS couldnt help you. Explain you are really worried about your sons mental health, thats what I did and they have arranged a priority appointment.
    Have you tried the GP for sleep medication. My son was on Phenergan but it has just been changed to Imipramine. Cannot get melatonin as GP cant prescribe it.
    Its so hard when the support isnt there. But you are doing great getting your son to school everyday. My son was easier getting to primary but secondary school is so much harder. I dont sleep well as im always dreading the next day and I feel on edge all the time. Hope you get the help you need soon.
  • Kallie79
    Posts: 20
    Thankyou everyone for your kind support. X
  • bagpuss24
    Posts: 16
    Kallie; you are in no way being judged here!
    You have described a typical weekday at our house.

    It is draining, and upsetting - strategies that work one day, don't often work the next - we have that many different ones to keep trying.

    W have been to Cahms - and was virtually blamed for our Parenting skills. (Despite having a high achieving 14 y/o son with no issues).
    The school SEN was very helpful - having confronted them with Evidence (Our daily diary) and information booklets kindly provided by this site - they looked into PDA much further and even contacted Cahms to explain that they also thought our son had PDA and it certainly wasn't our parenting skills.

    Our diary helped us pin point triggers for meltdowns (change, smells etc), and also gave the school a full picture of life at home. Our son masks in school - bottles it all up, and explodes at home.

    You are not on your own.
    There are some booklets available via this site - which we found very helpful and also forwarded to school to take a look at.
    Our sons Teacher has various contingency plans for School Refusal and strategies for reducing demands.

    One thing I had never considered - was School assembly - where everyone is crammed into the hall. Our son found it too claustrophobic and started to fidget and pull his shoes to bits.
  • June67
    Posts: 689
    Every parent on here is a good one trying each day to help understand and support their challenging children whilst suffering the mental torture of living with the situation they find themselves in. Always wishing things could be better but constantly on edge; in some ways mirroring the kinds of things that happen in their child's head and body but at least we have the chance to develop our understanding, then we have to find ways to help them with their own individual issues as best we can. The more they can understand themselves as they grow the more control they can have over their anxieties and how to manage them the better it will be. If by reducing stress when we can or sometimes giving in on small matters we can help them have calm spaces to be able to help begin themselves what's the problem? I've noticed that if I can give my son space and time he is in control of he seems to cope better with the stuff we can't help but keep control of.
  • bettyboo1
    Posts: 38
    I can relate so much to everything said by all here. We are not on our own on here. Tbh this site alone has got me through quite a few difficult times and continues to do so. Thank you to everyone who posts and shares. Kallie be kind to yourself do what you can for yourself. Stay strong. ❤️❤️Much love
  • Kallie79
    Posts: 20
    Thank you everyone.
    Thanks for replying. Does anyone else have the problem of their child adopting an adult tone when in the grip of a meltdown?
    What I mean is my son will talk to me as if he's the adult if he's having a meltdown. For example hell say ' stop your nonsense right now I've had enough of it'!
    I have no idea why he does this. It's maybe the control thing?

  • SGCmum
    Posts: 78
    Hi Kallie. My daughter has done similar things. The other day she said something like ' these are the rules, your aren't going to talk at all, and if you do, I'm allowed to hit you. This is not even a reversal of roles as i certainly don't say that sort of thing to her. I think you're right about the control.
  • bagpuss24
    Posts: 16

    Kallie79 said:

    Thank you everyone.
    Thanks for replying. Does anyone else have the problem of their child adopting an adult tone when in the grip of a meltdown?
    What I mean is my son will talk to me as if he's the adult if he's having a meltdown. For example hell say ' stop your nonsense right now I've had enough of it'!
    I have no idea why he does this. It's maybe the control thing?



    Yes. We get that quite often!
    Normally it's "I want you to stop it now"
  • Holly59
    Posts: 2,561

    Kallie79 said:

    Thank you everyone.
    Thanks for replying. Does anyone else have the problem of their child adopting an adult tone when in the grip of a meltdown?
    What I mean is my son will talk to me as if he's the adult if he's having a meltdown. For example hell say ' stop your nonsense right now I've had enough of it'!
    I have no idea why he does this. It's maybe the control thing?



    Kallie79 Since you live in Scotland you don’t need a formal diagnosis for support it’s needs based it’s covered under the Additional Support for Learning Act . School must used PDA Strategies .
    This “ I am the boss “ type behaviour is part Role Play , they are the Parent / Teacher and the need to control .
    Are school using PDA strategies ? Have you had an assessment of your needs by Borders Carers ?
  • Nowornever
    Posts: 15
    Kallie79 Everything you say sounds so familiar. Parents on here are the only people I've ever found who really 'get it'. We are all on a rollercoaster and feel stronger some days than others. The only thing I have found that my son will regularly go to is Music Therapy through Nordoff-Robbins. It may be worth investigating. It is like counselling but using music to access feelings, build confidence and and create a positive experience. It's not about being musically gifted in any way but about sharing, improving self-esteem and modelling social behaviour. His therapist was able to come to the house for a first visit and was great at building a rapport. That encouraged my son to give it a try. You are so much stronger than you realise. xx
  • Holly59
    Posts: 2,561

    Nowornever said:

    Kallie79 Everything you say sounds so familiar. Parents on here are the only people I've ever found who really 'get it'. We are all on a rollercoaster and feel stronger some days than others. The only thing I have found that my son will regularly go to is Music Therapy through Nordoff-Robbins. It may be worth investigating. It is like counselling but using music to access feelings, build confidence and and create a positive experience. It's not about being musically gifted in any way but about sharing, improving self-esteem and modelling social behaviour. His therapist was able to come to the house for a first visit and was great at building a rapport. That encouraged my son to give it a try. You are so much stronger than you realise. xx[/quote

    Will PM you x

Please Log in or Register to comment on this discussion.