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Your experience and advice would be appreciated for a newbie
  • shell
    Posts: 4
    Hi, I am new here and had PDA mentioned to me for the first time today by my son's Clinical Psychologist. Having read the criteria, parts of it are my son in a nutshell. Luke is 14 and has numerous problems, the main one being Sturge Weber Syndrome. As a result of this he has epilepsy and as a result of the epilepsy he had major neurosurgery aged almost 3. As a result of the surgery he has weakness of his right side, no field of vision to the right in either eye and as a result of who knows what, he has VERY challenging behaviour. He has been labelled with autistic traits for years, but he is a sociable child, who makes very good eye contact, but can be obsessive.

    Trying to get him ready for school in the morning is horrendous, as is trying to make him conform at meal times. He flies of the handle for what appears to be no reason, gets very violent, kicking, spitting, hitting, swearing. Afterwards he is desperately sorry, but trying to get him to do whatever caused the intial rage, just starts it all off again. At home if left to his own devices he is no trouble, he does jigsaws, plays computer games, watches DVD's, but try asking him to do something if he doesn't fancy it and BINGO. School obviously have major problems as they need him to conform, somedays he seems to spend more time in the time-out room than in class. He gets very wound up by other children getting upset or into trouble. He is a total control freak and very manipulative. He also seems to find it impossible to enjoy the now, as always wants to know what is happening next.

    For years we have felt that his inability to conform has prevented him learning. He has a fantastic memory and in some ways seems so bright, but will not allow himself to learn.

    In your experience is it possible to have PDA traits that run alongside other problems, the same as people have always labelled him with autistic traits?
  • I understand that you can have a number of conditions alongside PDA - they say my son has traits of Aspergers (not enough for a firm diagnosis of aspergers) but also ADD, ADHD, epilepsy and others. There are other parents who post in this forum whose children have other diagnosed problems/ illnesses and I am sure they will post. Apart from your sons age you could be describing the behaviour of my son (who is only 6 1/2)!
  • Anita
    Posts: 1
    My daughter was a nightmare at getting dressed for school, she has pda we bought an egg timer and we get her to beat it every morning she is now ready in 3 mins. It works for her with other things toolike teeth cleaning putting on shoes etc. It may not work for you but its worth a try.
  • Lesley
    Posts: 21
    Hi,

    Just wanted to I have a son aged nine who was diagnosed with PDA two years ago and the bit you said about your son not enjoying the here and now because he always wants to know what happens next is also true for my son. We've been to various zoo's, museums, etc and he's off from one thing to next not really taking the time to stop and enjoy or look at anything. Try and get him to hold back and look at things and he gets really worked up then starts to get angry.

    My son is generally OK at home but tends to be very stubburn, arguementative and of course he is never wrong. If anything goes wrong then it's generally my fault or the nearest person at the time. The biggest problems are when it involves other children and places where he has to stick to the rules, such as school. My son couldn't cope at mainstream school so although he doesn't have any learning difficulties he goes to a special school. This is much better for him as he was becoming very depressed at mainstream, but he actually enjoys school now.

    Lesley
  • Pamela
    Posts: 205
    My daughter also has a chromosome disorder called IDIC15 she has four copies of the q11-q13 of her 15th chromosome. This is the region that is linked with Prader willi/Angelmans, her characteristics of this disorder are autism, epilepsy,severe learning disability, poor fine and gross motor skills, auditory processing disorder and visual perception difficulties. She also has a bowel condition and an anxiety disorder as well as PDA. Personally I am starting to think that PDA is possibly a symptom of this disorder (in our case anyway)
    www.idic15.org
  • again my daughter has the same problems getting dressed and sitting down for food. with all the problems i have with her to keep my sanity i priorities whats a problem. i dont mind the grazing because its not that important in my opinion compared to other things and for my own sanity i let alot of things go. as for the getting dressed for school thats very important, but the useful thing is, children with pda are extremely competitive and although something that works once may not work again or for long, you can do a number of things to help this situation. like anita said beating an egg timer is very helpful, other things that work for me is telling her im gonna beat her getting dressed etc. i can remember one morning she wouldnt get out of bed, i stood for about 5 or 10 minutes telling her she really needs to get out of bed, i then said well i guess ill win getting dressed first (i dont use it often because as i said things may only work a few times so good weapons need to be kept for needy times :) as soon as i said it she flew out of bed, flew down the stairs and had her clothes on faster than i could even get down the stairs lol

    im not suggesting that this would work for a 14 year old lad but try similar things that you feel may work.
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