Help understanding Cerebral Palsy behaviour

[Hangingbellyofbabylon]

Dd is 4, spastic diplegia. Can walk independently for around 100 metres, otherwise uses her wheelchair.

Her behaviour has always been difficult. Huge meltdowns lasting over an hour over something like the wrong socks. Complete with scratching herself, drooling and rubbing all over herself and everyone else, hitting, throwing stuff. We have asked over and over for help managing her behviour and have been told that is due to our parenting skills and that we need to be tougher on her.

As she has got bigger the tantrums have got bigger and scarier. This week she climbed on the window sill and threw everything off. This morning it took 2 adults to hold her down and get her dressed. She is very physical when I have to try to get her into her carseat.

She is cross because she is fed up of having cerebral palsy, fed up of having to go to hospital appointments, of wearing splints, of not being able to run with her friends at play time. I get all of these things but can't make them better.

She also shows behaviour less easy to understand - obsessive objects. Never the same object, she has never attached to a certain teddy or anything. But whatever object she obsesses with it, she treats like the most treasured thing ever - last week it was an apple pip, the week before one of dh's old toenails.

I don't know how to cope with her behaviour - I feel scared of her when she attacks and hits me and my other children. I don't know what to do with her, can't shut her in her room as she empties all of the drawers and wardrobes. I have nowhere safe to put her at home and it scares me.

I don't know who to turn to for help but it is affecting my mental health and leaving me feeling very bad about my parenting as I don't seem able to help my dd in anyway.

Hi hangingbelly(love the name)

I have a dd of 4 who probably has asd, so I obviously can't completely relate. Having said that, some of the behaviour you described I can certainly relate to.

Many people, mostly on here, have told me to shut her in a room when she is having one of these meltdowns, but my reaction was exactly the same as yours. She will just empty everything and she wont stop until something is broken. So I can completely understand why you can't always do this.

With regards to your mental health, again, I can relate. It is awful when you feel like it's something you're doing wrong. I have to say though sometimes the "experts" don't always get it right as i'm sure you're aware. Unfortunately there will be times when you will struggle to control her and this is due to her condition not your parenting skills. Whereas it is very important to except the help and advice from certain professionals, please don't think that it's something you're doing wrong. I am almost 100% sure that it's not. Anybody who cares enough to feel like they're doing it wrong usually are doing there best in my experience.

I know I haven't offered much in the way of advice, but I hope I have given you some words of comfort. :)

I'm sure someone will post who is in the same situation as you and can offer more practical advice so hang in there.

Do you get any time to yourself to get your head together?

I obviously meant "accept", not "except".

I swear my spelling and is getting worse the older I get!!

dd(10 years) has cp (originally diagnosed spastic diplegia but now quad as all limbs are affected)and we have the behaviour issues too that are best described as toddler tantrums that she has not grown out of but i can say that in the last year we have had fewer- and i can hopefully put this down to being totally cosistent in approach every tantrum,sending her to her bedroom(admittedly she does not damage stuff)and she just screams it out alone and she knows that when she is prepared to behave she can come and rejoin the family as going up and trying to talk just does not work,she always has to be right and always has to have the last word.
dressing - when dd was about 5 we went through the refusing to dress the bits that she could do so one day i put her in the car in her pyjamas and said ok go to school like that(i did have clothes but she didn't know)and drove slowly to school, we were already late due to behaviour(so that everyone would have gone in)and then when she realised that she was going into school in her pyjamas it was amazing how cooperative she was about getting dressed in the car park and i can honestly say we have never had the problem again as she knows i will put her in the car in pyjamas.
mental health- i know that i am still feeling depressed due to dd disability and the fact that i can not make things right for her but please do find some one that you can talk to about your dd (physio or ot?) as they can be helpful with suggestions even if it can't be helped over night.
I have decided that i will be the person that dd can come to and hopefully share her worries and if that means i then need help to help her then that is what it takes - i will fight for her and make sure that she gets everything she deserves and that means that i wind up professionals then so be it!

I did really struggle with dd from about the ages of 5-9 but we seem to have turned a corner at the moment- i don't know if this coincided with introducing disability organised sports and with that introduced other children with disabilities into her life(so that she could see that she isn't the only goldfish in the bowl)but atm(fingers crossed) we are quite settled in our family(other than recent house move falling through at last minute- which really affected dd as new property was really for her and to meet her needs)

I have a friend with a dd with cp a year older than dd and she has (imo)been a little bit too 'soft' with her dd-allowed her to have her own way, allowed her to not wear splints cos she didn't want to, gave in to her for a quiet life and sadly the dd is now becoming more challenging and it is harder for mum to talk/reason with her and she is struggling with mobility due to pain cos not worn splints, and people are getting to notice the behavior more as it is really not acceptable at 11+

am happy to talk more if you wish x

Oh hangingbelly - it's all so familiar! We have spoken before about our similar DC, DS is 5, spastic diplegia CP and walks for a similar distance. He has similar tendencies. We have three times been refused for CAMHS and told it's a parenting issue. Luckliy our paediatrician disagrees and has referred us to the Complex needs team that has a bit more clout than CAMHS. I live in hope but am not holding my breath!

We have found that letting DS cry is important. We had been trying to make him stop, either by telling him off or reassuring him, hugging him while avoiding stiff waving limbs encased in hard plastic! However this has not worked and leaving him to get it out of his system before engaging again is helping, he has only thrown things once though and my reaction - through shock and pain because it hit me - really shocked him and he's not done it again - yet.

We have also started talking a lot more about CP, what we are doing as his parents to try and make things easier for him and what he can do. I am also on the list for a play therapist as he's getting fed up of hopsital appointments too.

I am just starting to properly research where I can go for help, counselling or maybe homeopathy or something as I know I need to deal with the issues of his birth, disability and subsequent difficulties and my handling of them and my emotional and mental health needs. I'm not sure quite where to head yet but I am realsising that I need to deal with it and deal with it properly so need to find the right person etc... There is no help out there directed at us!!

Sorry that's turned into a tome about us but I really wanted to say that I hear you, and get where you are. I'm sorry I can't help any more.

Take care

ds2 has mild cp (spatic dip), i think sometimes once a child has one dx everything is automatically attributed to that one dx.
I insisted on ds2 having a completly fresh assessment at the CDC. He was then dx with ASD.

I'm not suggesting that your dd has ASD but just that it is common for profs to look no further than the intitial dx.

It is very common with CP to have other co-exising conditions or just assosiated behavioural problems linked to the brain damage.
They key to getting the right support is to get the behavioural problems recognised as something other than parenting styles.

Keep pushing & fighting.

I have a 7 year old with cp-(mobile,low
tone ,strange gait etc)I have always said
that it is his behaviour that presents the
real problems not his cp-It seems your dd is
verbal? so she is expressing the things that
frustrate her- My ds has autistic traits
(possibly one day will get a 'proper' dx)I
think what I am trying to say is that there
can be another underlying issue-Do not feel
bad about your parenting;I am sure you are
doing everything you can to help her( I
sympathise with the safe place issue; I am
tryng to address this at the moment-cerebra
give grants for therapy or equipment if you think of anything that may help)- agree that
you need something to help YOU(yoga's great)

nothing to do with behaviour really - but dd2 used a croc walker for the first couple of years at school - she could walk independently (probably similar) but the croc allowed her to run and play in the playground with her friends. she didn't use it inside the school, just for playtime.

dd2 started complaining about being disabled v early (she's 7 now, and the meltdowns are v specific, because she wants to x/y and can't) - i do think there's a place for play therapy or similar in these situations - they are mature enough to recognise the feelings, but not mature enough to deal with them. maybe cahms would have a play specialist with some ideas?

My DS, has CP all limbs involved and uses a wheelchair/has never walked. He is now an adult.

As he moved from toddlerhood on it became obvious that some of his additional problems, behavioural and otherwise were due to him also being on the autistic spectrum. Although he has never been formally diagnosed this has been accepted by the (many) professionals/agencies who have worked with him over the years.

Recognising this, and finding ways of dealing with it has made a huge difference to him/us. We found using social stories around what was/was not acceptable behaviour really helpful.

It is always worth considering that there may be issues other than CP.

I think Madwoman has hit the nail on the head, 4 is an age when children are more aware of themselves and the world around them and of differences between themselves and others, but not able to understand and deal with the diffenences.

This type of behaviour is not always seen in CP and is also partly due to character and disposition. Could the community paed look into a behavioural assessment, just to rule out behavioural problems, asd etc. There are ways to manage behaviour but you need help professionally I think.

hanging - i also wanted to just echo again something hairy said - sooner or later you do have to address the cp issue in terms of what it will mean longer term. it's scary enough for parents, goodness only knows what it's like for our children. it was about this age that dd2 started asking 'why' questions, and we started introducing snippets here and there to get her a little bit used to some of the things it will mean for her (in a very softly softly way - obviously the main thing is to focus on what she can do, not what she can't do lol). and to put a little bit more emphasis on the 'why' aspects of the different therapys - so OT will help her learn to (insert appropriate thing - get dressed for pe like here friends/ write her name/ whatever), physio will help her to get stronger so she can (insert appropriate physical activity).

we have bent over backwards to enable dd2 as much as possible - i'm sure you are the same. stuff that has really helped dd2 feel more like her siblings and friends include finding a ballet class that would take her (when she couldn't stand up without holding onto something lol), finding swimming lessons that provided her a 1-1 in a regular group lesson, and finding a truly brilliant adaptive ski instructor. we're doing our darnedest to build up her confidence and self-esteem to enable her to withstand some of the rubbish that the world will inevitably throw at her. (she might be blonde, gorgeous and clever, but she drools and walks like a drunk). so we just sort of shift the emphasis to find out what she wanted to do, and then found a way to enable her to do it... mostly. (she wants to learn to skateboard. there are limits to the art of the possible )

dd2 went through quite a period of 'i don't want to be disabled'. i'm sure there will be plenty more. ultimately, i guess we all just have to help our kids come to terms (and challenge!) the lot that they have been given. we can't deny their feelings in the matter, but hopefully with some decent support (camhs/ play therapy etc) we can help them fulfil their potential - the same as we do for all our kids, nt or sn.

if it helps, she's got a massive crush on her ski instructor.

thank you for all your messages.