I need to talk about DS1 after a real,explosive evening, I need to 'talk' about him and the problems we are having, I will also use this OP possibly to take to his consultant and the school to get my feelings out in the open but I'm not sure about that yet. I'm tossing and turning in bed thinking this over and over and there isn't anyone to talk to right now, I hope no one minds, It will be long.
DS is now 8, he was poorly from birth with mainly digestive problems, when he was 1 he started getting loads infections and has constant chronic loose, greasy stools. After a collapsed lung he was diagnosed with Cystic Fibrosis a few months after his second birthday.
He walked and talked as 'normal' milestones predicted although he has always had next to no special awareness and is very clumsy.
He has had near enough the same medical team since diagnosis and he has had near enough the same medical routine two times a day since diagnosis, it Is physiotherapy, oral medication and nebulised medication.
DS has attended nursery and school like everyone else although due to his 'immature behaviour (relative to peers) and poor academic progress he was one of a couple of children held back in reception class (although was technically in yr 1) he can read and write and he is very good with numbers.
He has a few friendships although I personally think his social skills are very lacking, he is overly physical with everyone, strangers or friends/family and doesn't have any sense of what is or isn't acceptable behaviour in a social situation.
For example, he will hug with his whole body, rubbing his face on us.
He will approach strangers and take things from their person, he will not know when to stop a play fighting game.
He is a very physical boy in general, always moving, even in his sleep! He twiddled his hair and puts everything in his mouth (usually fingers), he finds it hard to sit and often hovers on the spot or on his knees or with his legs crossed at odd angles. He is always fidgeting and moving in some way.
He makes a lot of inappropriate noise, if he finds a word on television amusing he will repeat it over and over, song words are the worst for this.
He hums to himself or to himself but the main this he does is count, just out loud counting 1 upwards, this gets a lot worse in times of stress and is accompanied by him covering his ears.
However funnily enough he hates noisy situations, he also hates being wet in his clothes (splash him and its melt down time) he hates wind in his face also.
He loves repetition, if he finds something fun or if he has learnt something at school it is all he wants to do, sums, writing a certain way, a certain thing he has learnt to draw...
Back to medication, as I said its t changed a lot at all from the first diagnosis and yet everyday he asks what he has to do. Next, how many star jumps for physio, how long to do the neb for etc, every day without fail for 6 years as if he doesn't know what to expect.
He goes to a clinic and has a community nurse once a month at the least, he reverts right back to toddler behaviour with medical staff he's known for these 6 years, he will refuse to talk or only talk in a baby voice, he'll demand to sit in the drs chair and play role pay, he'll want to play with the baby toys and take the drs pen, ID card, stethoscope etc.
he has never once asked a question about his medication or illness and when asked if he'd like to know he just ignores them or shakes his head.
I have spoken to the school who have agreed there is grounds for getting the SENCO to observe quietly in the back of the class in regards to the attention side of things although that was half a term ago and I've heard nothing so I'm going to have to chase them, the consultant has referred to CHAMS only to be told its their workload is currently pushed to the limit and we should try every other avenue first 
I'm on my knees at home, DP (not his bio dad) doesn't know how to be around him a lot of the time although he tries his hardest, it's the most frustrating thing to parent him, he can be the most loving, funny boy ever but to watch him get iller and iller because he will not co operate with medication or he has a melt down about something is heartbreaking. I'm banging my head against a brick wall knowing how to support him and cope with him,
Most people (I'm looking at you MIL) spend one day with him and decide he's manipulative and sly and he's just a naughty boy who has been spoilt by me because of his condition, I know my son is no angel and my a renting skills wouldn't win any awards but I don't believe he is bad or spiteful or anything like that.
I'm exhausted tbh, I want someone to help me with my boy so I can help him and his brothers don't have to listen to him fall apart over things and I don't have to fall apart secretly over it.