To hate the whole SEND system and everyone in it and wish they would all sod off

[ASimpleLampoon]

Not really but I'm just fed up.

I have one child in mainstream school. Has a health issue, no diagnosis, support plan in place in school. Everything is fine. Model student , great relationship with school.

I have a child with multiple disabilities /issues in a SEND school , considered "complex" and I am just fed up with doing my best but it never being enough.

I'm fed up of worrying if he'll want to go on his transport every day , or if we all get a call to pick him up.

I'm fed up of checking the school app every day , and waiting in e afternoon if I'm going to get a call to say he's had a bad day.

I'm fed up of the endless paperwork, the endless meetings , the phone calls, re waiting lists the appointments.

I don't want to talk to a teacher or support worker or pediatrician or OT or SALT.

I just want to have a normal day where I don't have to share with strangers every intimate detail of my life.
I constantly feel scrutinised and judged and like nothing I do is enough.

Yet I no longer have a .career or any hope of working more than part time, my social life is limited , I do have friends I meet up with but nowhere near the freedom I'd have if I wasn't a carer.

I don't have a life outside of caring for my child, and in a way that's OK, I love him and would do anything for him and he's amazing..

But I think I'm going to scream if I have to fill in one more form or go to one more appointment or one more meeting or speak to one more professional

I'm a. Private person and I can't stand the constant intrusion.

I’m SLT and fully support you and parents like us.

@StrivingForSleep
I'm not arguing about this point as its not the focus of this thread but my main point is that parents of SEND students especially those with EHCPs often feel disempowered by the system and my colleagues advice is a practical riposte to that.

I appreciate you x

I actually get on very well with most people involved with DC in real life

The failings of the system as a whole are not any of their fault

YANBU to hate the life of a SEND parent, it is a very hard road to travel.
Y are however, BU to hate everyone in volved in trying to support your child.

So I haven't voted, as they contradict each other, but I 'get' how it grinds you down.

I'm sorry you're having such a tough time OP. I can't imagine what it's like. My son is 4 with high functioning ASD and I found it's exhausting - mentally and physically and its a lonely place to be. Other parents don't get it. I've had to sacrifice alot to be able to meet my son's needs. Theres so much judgement. Even now the form filling, the psychologist appointments, the occupational therapists, etc. It's alot, all of the time and there's no respite. I adore my son but I'm drowning.

That's really worrying. I hope it works out for you x

Please read my updates, the title is a bit of hyperbole to be honest, I don't hate anyone especially not anyone helping my child, Ijust was in a fit of pique last night and fed up with this life. Better now x

@Notgoodatpoetrybutgreatatlit it isn’t really practical, though. That’s my point. The EHCP can only legally be ceased in specific circumstances and a parent wanting to chuck it in the bin isn’t one of those. The colleague would be better empowering those parents and supporting them to appeal, IMO.

Not going through the same but have a friend who is. You have my sympathy OP. Its shit. Its just a crap hand to be dealt. There's no way round it its simply harder than if you don't have the whole "SEN lifestyle" to contest with.

If you do just need to vent about it and how unfair it feels, go for it

I am so glad you are feeling more positive and resilient today OP😊

I agree with you and other pp's that there are many superb people working within the SEND system. Throughout my ds's mainstream school career, all the SEND support staff have been wonderful - so engaged and understanding - and I cannot thank them enough. I feel DS and I are so blessed when I hear about the nightmares others have experienced. He has to move into a special school placement now and I hope I will be in a position to give equally glowing feedback!

@Seawolves I hope you continue to channel that snark and from now on consistently tell twatty ignoramuses how rude it is to stare. Such losers. Lots of love to you and your child 💝

It’s really, really not. It’s there to make as many hoops as possible for you to jump through in the hope you’ll get tired and give up and they won’t have to fund any support.

Yes the bloody medication and endless ordering and delays and “oh you’ll have to phone round all the local pharmacies” and the stress of it all. As the adult you can’t ever ever drop the ball. This months joy was pharmacist forgetting to give one BAG of meds. I was in hospital so dh had to pick up. (And miss work to do so). It’s just hours of work every four weeks. Everything is hours of work. I just have no more time.

It's along time since I've felt such a level of understanding at a post.

I have multiple children with SEND.

Now older and it didn’t get easier

Some days I just turn my phone off and hide!
So much of what I've done over the last 20 years has been a total waste of time.

I don’t read it like that at all, just that OP is sick of being a SEN parent and therefore everyone involved (no matter how lovely and well meaning) is somebody she wished wasn’t necessary.

I have small children (without SEN as far as I can tell) and I cling on to the thought of them being a bit more independent when the going gets tough, so to operate at this level for years/decades must be extremely hard. You sound burned out and I don’t blame you at all.

Most parents with children who have complex needs are burnt out. With regard to all those people in health, education and social care. After 21 years I would say like anywhere it is a mixed picture. Some people are capable and supportive but hold far too many meetings and make calls that go nowhere - just placemarking (you are doing your job if you have a meeting). You get people who are lazy but present themselves as 'saints' because they work in SN. You also get people who take advantage and bully (as happened last week to my son at a day centre). Only very occasionally do you find someone who is prepared to help and move things forward.