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Waiting for diagnosis- feel like I'm at breaking point
  • Hi, I'm a new user and wow, so grateful to have found this website as it has made me so sure my 5 year daughter has pda. She scored 64 on the checklist. She's been referred by the paediatrician for stage 2 assessment for ASC but her appointment isn't until January. She can be the sweetest little girl but at the turn of a switch she becomes hostile, aggressive or violent.

    Just a few examples (there are many many more) I can't drive with anyone in the car , such as helping out friends on the school run as my daughter will start shouting shut up, cover her ears and won't let anyone talk. The other day she tried to run off by the road so I held her hand and she bit me. Nobody is allowed in the lounge unless she's happy for that to happen. I've tried removing her but her tantrums are way off the scale and will reignite days later over the same thing, even if it was over nothing at all. She often screams and hits out over absolutely nothing. Now she's back at school the evenings have become hell at times, where she's tired of holding it all together I guess.

    The other day a girl just looked at her and my daughter had a meltdown, crying and screaming in the car saying about how much she hates this girl, then when my other daughter spoke she grabbed the gear stick telling us to be quiet. Everything has to be on her terms. She has serious obsessional behaviour. She only wears leggings even in 32 degree heat, or completely naked at home. Right now she wakes up to ten times a night as she thinks she has bugs crawling on her. She thinks she's ugly which breaks my heart, and often says she has no friends, which isn't what the school report. I guess it's just her interpretation of friendships. Well, the list goes on and on.

    But at school, her behaviour is fine . Quite below age related expectations but making progress. I'm terrified that at her appointment they'll say there's nothing wrong or it's my fault. But I have two older kids, I've dealt with dramas and tantrums and I'm all for positive parenting with appropriate discipline. They have grown up to be mostly well behaved kids, doing well at school and what I would class as 'normal'. But nothing, not one thing makes a difference with my younger child. She doesn't respond to any of my parenting techniques and I feel like I'm drowning with the stress. I'm on tenterhooks the whole time and I just don't know how I'm going to cope if things never improve. Im in tears so often, worrying about what the future holds. I hate that it takes so long for the process as right now I feel like I'm in limbo. At times it causes a rift between my husband and I and my other two kids get so frustrated and feel sidelined as I'm always having to deal with the youngest.

    Oh gosh, I'm sorry it's such a long post but I don't know where to turn for help. Nobody can help I guess, I feel so alone with it all. I just needed somewhere to vent. Thanks for reading if you got this far :-)

    RM
  • webbwebb
    Posts: 2,577
    Hi runningmad

    So pleased you found the PDA Society website and the Forum where we all post to seek advice and support regarding our children who have the PDA Profile of ASD (or suspect they have).

    Really pleased to hear that the Paediatrician has referred your daughter for the ASC assessment and hope it will come in Jan.
    Have a look at the link below which explains what you can do in preparation for the assessment -


    https://www.pdasociety.org.uk/families/diagnosing-pda

    There are 2 sections that will be very helpful -

    a. What you can do in the meantime (ie whilst you are waiting for the assessment)
    b. Collating your evidence - for the professionals who will conduct the assessment

    If you would like to speak with another parent at length, why not contact our Enquiry Line Team who are all trained Volunteers and who are all parents of children with PDA?

    - https://www.pdasociety.org.uk/contact

    You can try using PDA Strategies with your child to see if her Meltdowns decrease, even before the assessment.

    I hope other parents will post soon to also support you
    Take Care
    Paula
  • June67
    Posts: 812
    Hi RM, what you describe is so familiar it's my son to a T. You are not alone and are doing the best you can, it's absolutely the same here at times with other family members and husbands, you bear the brunt of her behaviours and are trying hard to find ways of managing them and yes the ways that work are often contrary to what we as parents feel is 'right' but for us what is 'right' is what works today. We have just been through an over two year wait for help with our youngest who now has an ASC and PDA diagnosis which we got privately and an ASC diagnosis which eventually came through our local CAMHS (PDA isn't quite recognised in our area). I've spent the time we were waiting fighting hard to get the help and recognition we need but in the meantime followed PDA type strategies as these seemed to work best with him. I was worried if I did that and he wasn't PDA I might be turning him into a spoilt brat and was often open to huge criticism from others e.g. school, CAMHS etc. that it was my parenting that was the problem as issues were at home not school. This is all covered by masking and the coke bottle effect where stress builds up at school etc and is let out at home. Hang on in there and keep trying the strategies, they don't always work but it's somewhere to start. Unfortunately the fight for correct diagnosis is only the start, I hadn't really thought about what happens after as I could only focus on getting the answer at that point. Now we know we have to work out what next but at least we sure we are on the right path now.
    Your description of you daughter seems to indicate many sensory issues try to work out what they are to help you reduce her stress. It takes time but the better you and you family understand her the more you can help. You are not the only one whose child needs to wear or not wear certain things or have rules for the car, we are frequently seen driving in silence with the windows down in midwinter as he gets too hot! She is very young yet and may have language and other delays that stop her being able to tell you what is really going on for her which leads to more stress and frustration and meltdowns. Did you know you can apply for an EHCP before a diagnosis, keep pushing the school SENCO to help you or contact IPSEA (there's a link to them somewhere on the website here) who can offer help and advice about this. The sooner your daughter gets help the better her outcomes, not having help at school is damaging to the mental health and well being of your whole family, your GP might be able to help also. You have to look after yourself to or you are not able to help her; says the woman who spent most of last night on her son's bedroom floor, he's not a great sleeper either. So I've lowered my expectations for what will be achieved today and taken the pressure of myself in practical ways; knowing that I/we might not be capable of much today!!
    My youngest is eleven and only yesterday was able to say that he is scared all the time, he hates it and doesn't know why. He gets angry because he can't find the words to explain stuff even though he gets 'it' and gets told off for not listening when he can't say it back etc. All of this has just been highlighted in his PDA report and I didn't get it before and he wasn't able to say until yesterday. He hasn't seen his report. He just gave us a small window on what life is like for him and how he tries to cope when upset last night. I still have lots to work on with him.
    I hope this helps at least to show you are not alone and will find much support and understanding here on the forum. All the best June
  • Thank you so much for responding Paula and June. I'm currently hiding in the loo for two minutes peace lol so can't spend long but I just wanted to say I appreciate the support and I'll take the time to look at all the links to strategies and preparing for assessment on Monday (hoorah for school days).

    Thank you again
  • June67
    Posts: 812
    I often hide in the loo too!
  • Hi, just wanted to offer my support too. Your daughter sounds very similar to mine too. She’s 13 and was diagnosed with ASD last year. She has also always masked at school, it was only when she went to secondary school that she couldn’t carry on masking and the wheels fell off. I found Jane Sherwin’s book ‘My daughter is not naughty’ really helpful. Also, once we started using PDA strategies as recommended on here it made a huge difference. Life is still tricky, but it is a lot calmer - reducing demands meant a huge reduction in meltdowns. It’s great that you’ve recognised her difficulties and she has an assessment. We spent years with our heads in the sand, thinking things were a ‘phase’. Unfortunately my daughter now has awful mental health difficulties, I really wish she’d been diagnosed sooner... Good luck xxx

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