New here and in need of help!

Hello,

i am am new here, my cousin advised me about the site as it has helped her with her son over the years. I have a 3 year old son who is epileptic. The last two years my pride and joy has been doing things that have me concerned behaviour wise. It was through an epilepsy group post that I confided in when distraught with my sons for want of a better word attacks that I was suggested to look into PDA. Upon using the site to read up on it, it is like it was written about my son! However his neurology consultant refuses to believe  that my son (David) has any problems regarding an Autism Spectrum Disorder. one day I rang his secretary completely hysterical as my son had triced to hurt me throwing an easel at me and his consultant wasn't in so she put me through to someone in neuro psychology upon hearing this his neurologist told me off for seeking doctors David does not need and that he simply is clever enough to know how to manipulate mam. David doesn't have any issues in nursery makes friends easily and is incredibly polite and has the development age of someone two years his age. However at home its like Jekyll and Hyde and it's not just for mammy he has had these bouts of attacks for his auntie, gran, grandad, my partner, in public and his cousins usually if he can't play the dad in mam's and dads he will go berserk! David has had a number of medical issues since being born and I am pretty sure my gp thinks I am one of those obsessive parents and the health visitor doesn't want to know anymore after going through the usual behaviour techniques four times and not one thing works they just tell me to persist. The older he is getting the more violent and clever he is becoming to make me forget what I have asked him to do, he nips, bites, slaps, kicks, screams, head butts, cries until his head hurts, his legs give out during these moments and yet they tell me to persist he goes to hurt me frequently shouts at me to cry. We try empty threats of naughty boys and girls home or the police to which he always replies I will hurt them and kick them I will hurt them all. he has had an assessment with CAHMS which was forced upon them by his neuro but they said he was too young to diagnose and they don't normally see 3 year olds due to this. David when not having these attacks is usually so happy, clever and loving. He has always been obsessed with his cars since the day he picked up one of his cousins so when he's home you can always find him happily putting his cars into traffic jam lines or car park lines and idolises fireman Sam so there's always a fire engine engine present when playing he is always super happy and calm and no bother whEn is playing. His seizures seem to be settling a littlE now too but I am so frightened I am shouting at him and in a constant battle which gets him so anxious that he's becoming more and more violent when he could have PDA and I could approach him to do things with him in a way he can deal with

I don't know who else I can turn to for someone to just spend time with him and assess him to see if it's just age related or that indeed he does have PDA or something else. I have behavoural logs which nite how he was during these attacks who he was nasty and violent to on what date and the reason that caused it. These include having attacks over being refused a cake because he didn't eat his tea, not tidying up the paper he shredded up, refusing to stop shredding the paper And more what seem trivial triggers for an attack both physical and emotional on the people who are nearest to him. i also have videos just so upsetting time right now and I am beyond myself trying to find someone who will listen.

apologies on the massive introduction to David hope someone can help me out somehow

kay x

  • I do have children but I've never been in a similar situation so pardon me if I am way off the mark but here goes.

    I am just wondering how your life would change if he had a formal diagnosis at this point?   I am guessing you would be expecting some kind of plan put in place for his behaviour that would take into account what he could/could not do given this disability and pardon me for saying it (because I, in no way would like to blame you), but if it is was ME .... well I would want to know that everything I was trying to do which wasn't working wasn't because I was a bad mum but was because my child had a REASON for not responding to their behaviour charts, stickers, etc.

    OK so - you ARE a great mum ( / dad - you didn't say) because you care deeply - enough to seek out this forum for help and it's apparent in everything you say.  

    Secondly, if you had a formal diagnosis, it wouldn't make your son suddenly behave.  It would just mean you had a short-hand way of describing him and his behaviour to  to people, and you would be able to know "for sure" what routes to take to deal with it best and people would take you seriously and know that your attempts to 'stick with it' were failing not because of anything that was your fault ... I guess there might be some specialist advice available too - I am not sure because mine were older when they were diagnosed ...

    However, I think that maybe if you think of him as himself and use the techniques which are commonly suggested to deal with children having behavioural problems associated with ASD, that might just work just as well.  If you can find his triggers and try to help him recognize them and find solutions (or at this stage because he is so little - try to avoid them), etc.  It sounds like you know what some of them are already - so you're clearly doing that - you can take it to the next step and talk to him about them when he isn't upset (again not sure if that will work but it might!).

    I'm sure you are working on becoming educated about what it means to be on the spectrum and seeing if there is any help there, anyway.  There is a book called 'How to talk so kids will listen and how to listen so kids will talk' that might be useful (for ANYONE!).

    It might be age related and it might be ASD.  If it is age related then he will grow out of it.  If it is ASD AND age related he will grow out of it.  

    I get that what you want is to know if it is normal or not - that's quite natural.  But as it seems you are not getting what you need on that front and, as it does seem he is quite little, can I just suggest you keep all that evidence and keep gathering more, for a few years (maybe when he is about to start school) and then push for a diagnosis then when things will kick in that will help him at school (if needed).

    I know it is frustrating :(  

    Good luck!

  • I'm so sorry. It sounds like you're having a really difficult time. I'm sure other parents may be able to offer their perspective on your situation as a result of their experiences. As I'm not a parent, I'm not really sure what I can say that's useful. However, welcome to the forum. We're always here if you ever need support or just someone to talk to. I really hope that you get the answers you and your son need and deserve. xx