Behaviour and hydrocephalus

[Hydromum84]

I am new to mn and I am sure this has probably been asked before but I have struggled to find anything that can help me ...

My ds 6, has hydrocephalus , he's had it since 4 months old after he suffered meningitis. He has had 3 shunt revisions last one was 15/09/2012 aswell as an external drain due to an infected shunt . I know all these brain ops won't help him but I really am at my wits end with him. I find his behaviour very difficult to manage , he is uncontrollable at times , he is very unpredictable , he thinks its ok to smack and punch and shout at all of us ( I have two dds as well) he will go over and literally scream in my dd (3) face or punch her. Nothing is working , I have tried every road of discipline with him and I am currently waiting to go on a course for children with behavioural problems to hopefully learn something different to manage him.

I don't get any answers apart from well he's suffered meningitis and has hydro he is bound to have some brain damage that effects his behaviour , ok that's fine but that's not helping me at all. I feel like we are just left to it. If they said he Had ADHD or Austism at least I would know something , for now its 'it could e the condition'

I am just looking for someone who knows what I deal with every day, i feel alone with this.

His school teacher says he is fine In school, although he does need telling off sometimes and he will cry , here he will just shout back at me or throw/smack etc.

When I am out he just looks like a spoilt kid who I can't control , but I've tried , I have tried all I can think of, but tbh I have had enough of just having battles every day with him.

Hope someone can help

Hi Hydromum and welcome to the board. I saw your thread and didnt want it to go answered.

I know someone who has a Dd with hydrocephalus who sometimes has challenging behaviour.

TBH I think you need to be kinder to yourself, if your Ds has suffered brain damage which is likely to effent the way he behaves then standard behaviour methods are unlikely to work.

I have a Dd who has ASD who also has some behaviour issues sometimes, luckily she is only aggressive towards me as her siblings are much older and would probably flatten her if she hit them

I also avoid shouting, this was really hard at first but it really pays off if you can do it. I found when I shouted the Dd's would shout back. If I can remain clam [on the outside] it can help to difuse the situation.

I use a yellow and red card system for Dd3 which works relatively well for us, it is very visual and shows her that I am not accepting her behaviour.

I also give a very clear explanation of why I am showing a card [super nanny style]. I do not use time out as such because this sends her into a complete flip but what I do do is , if she gets a red card she has to leave whatever she is doing and find something else to do.

I dont know if something like this would help you with your Ds.

Hope some of that helps

Hi

Have you seen your GP about him? I'm wondering whether you should be referred to a specialist to check whether there is any physical cause for this (e.g. if he is reacting to pain) or whether medication might help.

Also, do you have any social worker involvement? It could be worth asking for a core assessment with a view to seeing whether you qualify for respite care or something similar.

Thank you for your replies.

I will certainly look at doing the card system , I will give anything a go! I have been told exactly what you have wrote , due to what he has been through he will have damage to the brain an basically we will never be able to control his behaviour . I am waiting to go on a course to learn how to control him in a way he will understand , but there is a waiting list!

You could try a happy and sad face card as an alternative to red and yellow.

I have tried this with v young children at work and have had some success with it.

I also use the MAKATON sign for "Stop" both at home and at work.

I have also been on a waiting list for a course for parents of children with autism for 12 months.

It is insane isnt it that people who are prepared to go on courses and put the work in to help their children cant even get on the courses.

Good luck

It's very frustrating!!! Autism has been mentioned before a ped appt with Christopher. I am currently waiting for them to decide if its work investigating into as they want to see if its something he will grow out of but considering he has been like this for years I doubt it! Also because in school he seems to behave most the time they don't really have a lot of input to help me. If he is kept busy and imam routine then yes Christopher can be fine , if he's left for 2 mins he gets bored and will get upto what ever he can!!

Sorry too many mistakes! Been a long day here !

Hi hydromum
my Ds (14 ) was born with significant hydro. He too has had many hunt revisions. He is developmentally delayed but his behaviour is nothing you describe with your DS. I guess it all depends on which parts of the brain that have been damaged but I would say don't let your paeds just fob you off saying its the hydro - your Ds deserves a proper diagnosis.
Can't link but shine is the support charity you need (used to be asbah) and they have lots of info and people who can advise

Thank you starfishmummy, I already have a lady from shine who is really helpful and she is helping me with school problems at the moment.

My ds got hydro through meningitis so I know that in itself can cause problems. It gets so tough when It feels like no one understands or believes how bad it gets !

Hydro itself is very difficult to deal with , it must be very tough on our kids too :(