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help needed
  • hi all am new !! i have three boys aged 2,4,6 the eldest has been diagnosed as having autitic spectrum disorder by one psychologist 2 years ago. we saw another psychologist about 6 months ago he saw him for 10 minutes and concluded that he had severe PDA. i tend to agree with this second diagnosis but we are still waiting for the official diagnosis. I decided to reegister today after another extremelly tough weekend this time for my father not me. i escaped away for the weekend with my husband as i was nearing breaking point and if that happens there will be no-one to fight for my son. but my father underwent a weekend full of physical and verbal abuse from my son ( he's been really bad since christmas again he was doing so well before ) which is normally aimed at me and his brothers. i feel devestated for him that he went through that and awful that i wasn't here for my son. but i needed a break. i have no support with the children, my husband cant cope and till a year ago had buried his head in the sand, other family members wont have the children because they cant cope so everything is left to me. dont get me wrong i love my boys they are the reason i am going to university to study Psychology it will enable me to try and understand my son so i can help him progress though life and in the long-term help other families. but at he moment i need help and dont know where to turn next, is there any advice people can give on who to contact many thanks for taking the time to listen to me
  • Pamela
    Posts: 205
    hello there bluearooba! Firstly you must know that you are not on your own! I know there are many times when I feel that people just would not believe the kind of stuff that Olivia puts me through. We are lucky that O goes to a secure unit once a month for respite. Both mine and my husbands family dont live near us. My M I L used to help and watch our three. But as O has got bigger and stronger she just cannot physically cope with her anymore. She still comes to stay, but now takes on the role of 'Cinderella' and catches me up with my cleaning, then we relax in the evening together with a bottle of wine! O has severe and complex needs and PDA is just part of it. She has a rare chromosome disorder that manefests itself with ASD, severe epilepsy, SLD, and hypotonia. Our latest rollercoaster ride is dealing with an increase in seizures and puberty. Welcome to a great site...it isnt all that active but we are here!
    Take care,
    Pamela
  • webbwebb
    Posts: 2,566
    Hi bluearooba

    My name is Paula and I have 3 children, eldest daughter is 17 and normal if 17 yr olds can be normal! Boy 16 Asperger Syn. and boy 12 Autism/PDA.
    When my 3 were little like yours I thought I would go mad and I seriously do thank God for anti-depressants!
    However it is very hard when you have 3 children so young especially if you have a child with PDA to consider as well.
    I know its really tough for you right now but can I ask a few questions before I make any suggestions of help?
    What type of school is your son at and is he coping.
    Have you contacted any organisations for help already - what did they say.
    Do you or your husband work
    If you feel you can't reply you could private message to me.
    Looking forward to hearing from you.
    Take Care - Things can improve.
    Paula
  • Ben moved to a new sckool in september as his main stream school couldnt cope with his outbursts or his demands, he is now in a behavioural school and has been getting on much better though they do find him challenging but are very supportive. My husband works 6 days a week sometimes 7, as he can he cant copewith it all. im at college at moment studying to go to uni in september. ive spoken to the doctor, psychologists, the school, social services but they werent interested! no-one seems to know what PDA is let alone where to go for help! its very difficult
  • webbwebb
    Posts: 2,566
    Hi, good to hear from you

    It sounds like you are carrying all the work load of caring and raising your 3 children, no wonder you need some kind of help(sorry to judge your hubby).
    Getting help for you and your family isn't easy when you have a child with PDA because not many people have heard of it or understand it.
    When my children were younger I realised that my husband and I needed to spend a lot more time at home(even if we seriously didn't want too)because it was the only way we could control our family life and try to reduce the inappropriate behaviours from our children.
    I have never been able to go to work/study since I had our 2nd child and my husband(who eventually came round to my way of thinking) changed job twice to get a job where he could work 9-5 (Mon-Fri only) and no more. Yes we do live on a much smaller income but our children have benefited.
    Its not easy to make big decisions like these but I do know of many other families that have to give up a lot to raise children with special needs.
    I have also sent you a PM.
    Paula
  • I agree that adjustments need to be made all round - it cost us hundreds of pounds every time we had an appointment when the only contract my husband could get was in London and the shortest appointment needed a whole day off at no pay. I do think it helps everyone a lot if both parents go to significant appointments.

    His current contract is working at home. Hooray! I don't work as a result of my own disability
  • mango69
    Posts: 967
    Welcome to the site. I have a boy 8 with PDA - newly diagnosed though long suspected. I also have an 18 month old. Life is tough with those two so I can imagine your lfe must be a lot tougher. This forum has sometimes been my lifeline - there is always a friendly reply when you are feeling like life cant get much worse. Most of the general public (and many doctors) do not understand what PDA is about and don't understand what its like to live with it day in and day out but the people on this forum do and so feel free to come on and tell us what your day has been like - there will always be someone to listen and know how you feel.xxx
  • its great to know that other people know how your feeling!! i understand what you mean webb, i love spending tome with the boys but i do find my studies at the moment a release because its my time, im only at college when ben is at school, and its great for the younger 2 to spend time with 'normal' children. they relish it and has helped improve certain behaviours they had copied off my eldest. he only had 3 'episodes' yesterday where i had to restain him which means that hes improving again, so can see the light at the end again(well until next time!!). i keep a copy of the symptoms and how it presents itself in behaviours in my handbag just incase!! get fed up explaining glad i registered i know this is going to a lifeline sometimes x
  • .
    I was coping without the knowledge of PDA- but 3 years on it has got more possible to cope and manage the issues. By year 4 the outbursts at school drastically reduced and she has a good year -at home they were less frequent][/code][/list]
  • lisafid
    Posts: 36
    have been reading all your messages and after feeling alwful all day am beginning to realise I am not on my own, my big question is what can i do to make things easier, can any one help me.

    Lisa
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