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psychologists and CBT or nothing and acceptance
  • aliveit
    Posts: 69
    Hello,

    So my 9 year old son with pda has just completely flipped because i very tentatively told him a psychologist was coming to the house tomorrrow to get to know him and to help him help himself with some of the things he finds difficult. The appointment was only made a few days ago. Would have told him yesterday but his anxiety was very high... or maybe i just shouldn't have told him and waited for when she turns up?

    Anyway, my question is, should i keep trying to find someone to help him (and all of us)?

    In france you have to see a psychiatrist who refers you to a psychologist. After 8 months we were getting nowhere so i started taking him to a cbt specialist, We went a few times b4 we came to england to help4psychology, another useless appointment in my sons point of view. The cbt specialist then suggested we go to the autistic resource centre, which we did.... more appointments.... they referred us to another psychiatrist, another appointment... and now another cbt specialist who is coming to the house tomorrow!

    Lots and lots of appointments which he declares will do nothing, the only person who can help him, is him he says!

    I feel so confused. I've been so determined to get him some help, to help him learn to cope, to help stop the violence which is destroying him, me and our family. I'm employing the techniques but still feel quite alone in this and things are staying mostly the same. I feel like i can't just do nothing, that if he could just connect with someone, if someone could make an effort to understand pda we might have a breakthrough.

    But am i wrong, do i just need to accept that he is not ready for that help, am i not accepting his condition and trying to fix him? Does he just have to work out his problems on his own, with time and our support? But i don't know if i can survive that! Am i making it worse by taking him to these appointments, although really i can't imagine how it can be worse....

    I feel like i'm not strong enough to help him on my own and support my other 2 children and i feel there is more chance he'll accept help from someone of authority, because i feel i have none left, or any confidence .... my parenting techniques have been turned on their head, i'm struggling against all my instincts just to keep him calm. Tonight all i could do once he calmed a bit was let him defy me by silently sitting on the sofa, tablet in hand way past his bed time, with a look of 'i will do this and you can't stop me'!!! I finally managed to coax him to bed silently, via email, but he has the control, all of it, because he knows i love him and don't want to distress or upset him or cause a meltdown.

    In the discussion now he's a bit calm, he said i should have asked him if she could come. I said what would you have said, he said 'no'!. So i explained that i'm his mum, i'm trying to do what is best for him and take care of him , whether he agrees or not... that's my job. He says's it'll be a waste of money(yes, it's private, no other option!) as he will lock himself in the bathroom for an hour... i guess we'll find out tomorrow.

    Sorry for the long story but needed to get it off my chest.

    Any thoughts or experiences welcome.

    Alison
  • SGCmum
    Posts: 84
    I can't offer any helpful advice but just let you know I really understand how you feel. It's exhausting. You feel you've done it wrong if you challenge their behaviour but also wrong if you let it pass. I have an 11 year old who certainly has PDA tendencies and an 18 year old who ticks all the boxes. The younger one is hugely anxious at the moment, and has finally accepted she needs some help. However, I have to tread really carefully as she can only cope with me saying things are hard for her at the moment. Any suggestion that she has a problem or her brain may work differently just sets her off. She hates to think she may be different in any way. I wonder if the same thing may be happening with your son
  • RhanHRhanH
    Posts: 1,108
    Hi Alison,

    How did it go? Did he lock himself in the bathroom?

    Sorry I wasn't able to reply sooner, holidays have started and my little darling is taking up most of my time, I have a brief window whilst she's happily engaged in Minecraft with her sister!

    Unfortunately I'm not sure I have any answers for you, it's interesting however that he already realises it's he who needs to help himself... I guess the question is does he have enough tools in his box to do that? I imagine as you're pro-actively trying to help that you probably feels he needs a few more! In which case you will need to decide if the pain outweighs the gain so to speak. I know with our daughter that we have to do a lot of convincing to try something. We always build in a 'get out', but the majority of times she will manage what we've planned as she knows it will help or benefit her.

    Sometimes we do have to pick the battles and it can be especially hard when these are bedtime ones and everyone is tired, but you did well to keep calm and he did go to bed! You're doing a great job trying to navigate and find ways around this very tricky diagnosis. Do keep going and try to take a few minutes yourself to recharge the batteries, not always easy I know! Take care. xxx
  • June67
    Posts: 782
    I sympathise and definitely feel the same sometimes; wanting to help, doubting my choices and feeling powerless as my youngest takes all the control and bullies the rest of us into submission to his will despite no really knowing what to do. Fearfully doing anything to avoid meltdowns so we can get through the day but feeling resentment building between different family members and the exhaustion in myself until I too have a 'patience by pass' and loose it or lock myself away to cry it out. Once I'm back to more normal I remember that he is actually a small frightened boy who doesn't yet have the skills to cope and needs me to choose to let him have control until he is calmer and we can try to work on his/their issues if I can find the right tools. I have realised my tool box is not fully equipped for the task and so am asking people who are supposed to have the tools to help us. It is taking time, often feels fruitless and frustrating and successes are rare but I keep trying. I'm their mum and as you say it's the job we have to do sometimes whether they like it or not, we may gain things we need even if they don't at first. Keep strong and look after yourself, you're trying your best it's all you can do. If a break and time are needed you might need to give him that time until he is ready. Knowing what he feels he needs to fix in himself might be a starting point, helping him understand the just because we know what we'd like to fix doesn't mean we don't sometimes need ideas for how that might work and what to actually do or try. A good counsellor prompts you to reflect and supports you in finding your own solutions, it takes time and happens in small steps. I hope things went better than you thought they would.
  • aliveit
    Posts: 69
    Hi. Thanks for your encouragement . It really does help to vent to people going through the same thing.

    Yes, he did lock himself in the bathroom! Dad was allowed in but couldn't get him out. Apparently he was on his tablet lying in an empty bath!

    The cbt specialist and me just left him there and she seemed very unsurprised. I thought bringing someone to the house, his safe place , was a good idea, but it seems like it made him feel unsafe and like he'd been invaded. Just my point of view of course!

    I think curiosity got the better of him or the uncomfy bath, and having gone upstairs after 45 minutes to say hi through the door we discovered him in the dark in his room. The lady did get to have a 5 minute chat with him and i really liked her approach and it seemed to surprise my son too and not in a bad way.

    She left me some work books she uses with various techniques and it would be great if she could get charlie to work through a few things.

    She had never heard of pda but was really interested and read all the documents i sent her even though they were in english. She specialises in autism though.

    Both me and my husband thought she seemed good and charlie agreed to her coming back when she asked him. Just have to wait and see if he'll interact next time. Fingers crossed, but i felt like i might be able to hope 4 the first time in a long time.

    I'll keep you posted

    Alison
  • RhanHRhanH
    Posts: 1,108
    Hi Alison, that sounds really positive. Five minutes is a good start, I know many families where it’s taken several weeks for a child to say anything. Personally I agree therapists coming into the home can feel threatening to our children but providing their agreed sanctuary isn’t invaded, it can work well once the trust has been built. I would suggest your therapist accepting the situation and not pushing the interaction is a fabulous start! My fingers are firmly crossed for next time! Xxx
  • dirtmother
    Posts: 897
    Yes, does all sound promising.

    Occupational therapy and speech/language therapy have been tremendously helpful to our son/us.

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