Really struggling with 5yr old DS1

[TitsalinaBumsquash]

DS1 is really testing me at the moment, he has just started school an they are struggling with him to (you may remember my earlier thread)
Im not sure if his behaviour is even normal and i certainly don't know how to deal with it anymore.

Brief history.

DS has Cystic Fibrosis, we have come very close to loosing him on more than one occassion.
He has been moved around an awful lot and dueto hospital visits and stays he doesn't have a great routine, but all the time he is at home he does have a great one.
He has a LOT of invasive treatments.

He is really angry and flys into a rage really easily, he has had to be put in a room at chool with thefurniture removed and they just let him scream as he was kicking out at them we have had to do this a fair few times at home to.

He makes really silly noises, ALL THE TIME like just humms or squeaks or growls and repeats it constantly, its like a vocal tic or something.
He mouths everything to, even people, which is a real danger to his health but was cant stop him he does it kind of absentmindedly, if he is leaning against a fence or something he will lick it or if he is sitting on my knee he will nuzzle my neck and lick me.

Apart from that its the real silly behaviour, which i know is ot abnormal for a 5yr old boy but is becoming a problem at school, he is rude, and throws and kicks and hits.

I don't know what to do at the moment. any ideas would be most welcome.

Hi. think I may have read or answered you previous post .... anyway, thought of this. A friend of mine has a ds dx with Sensory Processing Disorder. It occurred to me that your ds sounds v. similar to him, although he is older now and still displaying some of the behaviour that was fairly 'normal' at 5. These are from their website. It states they may have some or all of the symptoms:

• Hyposensitivity To Touch (Under-Responsive):
• may crave touch, needs to touch everything and everyone
• is not aware of being touched/bumped unless done with extreme force or intensity

-is not bothered by injuries, like cuts and bruises, and shows no distress with shots (may even say they love getting shots!)

• may not be aware that hands or face are dirty or feel his/her nose running

-may be self-abusive; pinching, biting, or banging his own head

• mouths objects excessively
• frequently hurts other children or pets while playing
• repeatedly touches surfaces or objects that are soothing (i.e., blanket)
• seeks out surfaces and textures that provide strong tactile feedback
• thoroughly enjoys and seeks out messy play
• craves vibrating or strong sensory input

-has a preference and craving for excessively spicy, sweet, sour, or salty foods

I would look at seeing if INPP or similar treatment would help him. It's easier to read this link than me explain it!

My dd had treatment and it really helped

here is a questionnaire on the website www.inpp.org.uk/questions/index.php it doesn't matter that there is a reason why he may have been late doing certain things he was still late doing them IYSWIM.

Actually I think this website is better

www.neurodevelopmentaltherapy.ie/assessmentquestionaire.html

Thanks i will have a look at the websites CarGirl, i am just so drained right now. The drs keep saying he is rebeling to his treatment as he feels he has no control over his life where he is always being forced to have these horrible things done so this is his way of saying screw you sort of thing.

At the moment we use a time out disipline method at the moment that he doesn't care about really but it gives me a time out from him, i also have a nearly 3 yr old ds who is copying everything ds1 does but in some ways seems older than him like he stopped putting things in his mouth long ago.
The noise thing is the worst he will hear a word or a sound somewhere, tv or radio or in the street and imediatley adopt a very sill voice where he sticks his toung right out and repeats the word or sound over and over for ages.

well he could be rebelling but he could also be experience neuro development delay, it's all about the reflexes not having moved on to where they should be so there is conflict going on which makes life hard for them.

INPP treatment can help people with CP fulfill their potential, help massively with ADHD (they often have too much adrenalin due to retained moro reflex), help with dyspraxia, dyslexia all sorts of things.

I was very sceptical before dd had treatment but I guess we are very complex beings!

Its difficult looking at the questionaires some of the things relate to his illness.

However he was never delayed in walking, or talking, he was easy to potty train and has never had a night time accident, he can dress and undress fine and is average in pe and things.

I don't know, his specialist says he will refer us to CAHMS if i want i don't know if it will help though last time we went they just set me up with a young mums parent group

My understanding is that the illness causing the answers to be YES doesn't matter IYSWIM. The reasons why they couldn't do xyz or do do xyz don't matter it just means that the conflict could be going on.

If there is a practioner near you it would be worth going for an assessment appointment as the reflex tests are quite simple and will give them the information they need.

The "tests" are things like walk backwards with your eyes shut, stroke their backs with a brush and watch for the reaction etc etc it's looking to see if their reflexes react like a baby, a toddler, an older child, or an adult.