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recent diagnosis and behaviour

emac1308emac1308 Member Posts: 4 Listener
edited August 2016 in Parents and carers
My son (3 and a half) has been recently diagnosed with bilateral preventricular leukomalacia and this has caused him to have cerable palsy, I am struggling to come to terms with this, yes he can walk, not very well though and is always tripping over and getting frustrated, he was very delayed in every aspect going but is catching up slowly but I am struggling with his behaviour, is this due to the condition or is this something else. I just don't know what to do anymore :( I can't even make our tea or go to the toilet without him doing something he shouldnt, he does not sit still and is constantly hyperactive and is on sleeping medication too. If anyone can help this would be much appreciated, am a mum at her witts end and need answers, kind regards, Emma.

Replies

  • shaana1973shaana1973 Member Posts: 3
    hi emma first of all i feel for you, i have been in the exact situation and at the time all thebehaviour problems started when my son was 3 years old, he is now8. you will find that when its just you and your son the behaviour isn't as bad (seems like he will need alot of one to one support) when theres alot going on,for example other people or different noises around him, this can be too much for him to cope with also he doesn't know how to deal with it,this is where hyperactivity kicks in, sounds like he might also have sensory issues ( ask your doctor to refer your son to an occupational therapist, i hope some of this might help, i have been struggling with my sons behaviour for several years now and can only advise you on my experiences but i have so much more to say - i'll be typing for hours! by the way my son was diagnoised with cerebral palsy but few years later i found out thathe was also autistic which was part of the behaviour issues. i found one of my biggest problem is that because my son looks average people find it hard to understand his dissability, basically if you cant see whats wrong with him its alot harder to understand the condition and his needs. let me know if theres anything else you want to know regarding my experiences!
  • emac1308emac1308 Member Posts: 4 Listener
    Thank you so much hun and yes your exactly right with everything you just said! I have to wait for everyone to leave school so that I can get him out otherwise it's like he's hand a bag full of fizzy sweets and I cant control him at all. You can tell his legs aren't right but people don't understand that his development is at a 2 year old other than his speech so very hard to explain to them. Everyone blamed me for his behaviour bit since this day one but my son just doesn't understand and he really doesn't. You can tell him until your blue in the face. His memory is pants, I can teach him his colours the 5 minutes later he's forgot them again. He screams for his mummy and I'm right there but he doesn't recognise me :( I can deal with the cerable palsy but I can not deal with all this behaviour :( x
  • shaana1973shaana1973 Member Posts: 3
    so true, you've hit the nail on the head regarding his understanding - as he gets older his language will seem normal even advanced but if he's like my son he will be copying the words/language around him but does not understand alot of what he's saying or what anyone else is saying, so a simple command like "put coat on" could seem foreign to the child - you will know he doesn't understand because he will laugh,jump around, make noises and theres no eye contact. as for the walking you will find he walks very very slow and trips up alot and bumps into things or other people ( even someone in front of him!). i hope you've got the ball rolling for your son to be seen by a string of specialists, time consuming but very helpful even if it only rules certain things out. i have had to find most things out on my own and had to ask doctors for everything i think my son would benefit from, what ever you do please do not wait for anyone especially doctors to guide you. if you need any more info feel free to get in touch or if you want to have a chat even on the phone let me no hun and i hope things get better for you.x
  • emac1308emac1308 Member Posts: 4 Listener
    Have you got an email address hun, or is there anyway I can private message you x
  • shaana1973shaana1973 Member Posts: 3
    edited November 2014
  • emac1308emac1308 Member Posts: 4 Listener
    Emailed you hun xx
  • ReachingOutReachingOut Member Posts: 3
    Please also feel free to call Newlife Foundation for Disabled Children. Our trained nurses are on hand to provide support, advice and information on all aspects of your sons condition. They are also happy to just have a chat if you are feeling at your wits end and just need to vent. Please call free on 0800 902 0095 or www.newlifecharity.co.uk x
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