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 so sorry, I don’t have any advice or solutions, I’m sure you would’ve thought of them already if there were any. I just wanted to say that must be really difficult and send you good thoughts.

nope, that’s your perception. I made one supportive comment to the op and you have done nothing but attack me with buzz words. I’m a huge supporter of disabled people and an advocate for digital accessibility in my work, I am really unsure why YOU chose to hijack this thread with nasty comments towards me then expect me not to stand up for myself.

The op’s situation sounds very stressful and she has my sympathy.

Are you maybe misreading @TeenLifeMum posts? I genuinely don’t think she’s saying the things that you think she is? I hope things get better for you if you’re having a bad day, I can totally relate to that.

Thank you for writing this … I’m in the cyclone of waiting for a diagnosis for my DD … I’m tired of “tell me about your DD?” Questions and hearing the word she had an emotional day

I just want to have a “normal “ day where I don’t worry that loud sounds will cause meltdowns and I don’t have more and more forms to fill in

Plus the constant worry about her future and how she will cope

Thanks. At least on the weekend there's no calls and I can do admin in the week

Parent to an SEN child is a relatively exclusive community and I am sure many of us have experiences that resonate with each other.

Given this, I am struggling to comprehend how your posts are supportive. Or perhaps being supportive was never your intention?

Thank you!

I definitely understand.

We're just at the beginning and I'm already exhausted and overwhelmed by it all. My son is currently out of school and getting him back, hopefully to the mainstream school he was at before he became disabled will be possible but we're waiting on his EHCP to go through.

Everything is about waiting. It is all so incredibly slow and frustrating.

Don’t have any advice just solidarity. DD is older teen, has EHCP. I’m absolutely exhausted morally because of the pressure and responsibility. Every little thing needs to be controlled. When they are older it’s especially obvious how different your life as a SEN parent. You don’t get your life back when your child is 18.
We don’t have family around so never had outside help. And our short visits are not enough for them to get an understanding so they are useless even for distant moral support. So it’s DH and I only, but I’m the main carer.

Thanks. I hope it all works out for you

I take my last sentence back, with apologies. You definitely posted some kind and supportive comments. It just seemed to take a turn somewhere.

Thanks. Mine is a young teen. That's probably why I'm starting to feel so fed up. Most of my friends kids are getting to be a bit independent now, as is my other child, but I still have the responsibility of a nursery mum but with more admin and meetings etc.

But...if there isn't a bun fight in the middle , is it even a SEND thread. 😂

Just wanted to send solidarity, OP. I have two SEND kids with very different needs and it’s absolutely relentless. I’m hanging onto my (low-paid, PT) job by a thread but if I gave it up to home educate I know my own MH would suffer (I’m autistic and rely heavily on the structure and interest my job provides, such as it is) and at least one of my DC would hate it anyway. Appreciate it works for some but, like our kids, we are all individuals and have to find the solutions that work best for us and our families (as if that should need to be said on a thread like this!) It’s so sad to see parents turn on each other when the problem is an education system that isn’t fit for purpose and a society that judges a person's worth by their productivity and little else.

As for the SEND system, the language I routinely use about it is far stronger than yours, so I commend your restraint! Also totally agree about the intrusive nature of it all - I sometimes really envy the families who get to go into school for parents’ evening a couple of times a year and have a quick chat about their DC’s grades, handwriting, etc, when several of my DC’s teachers have seen me at absolute breaking point and I spend more time speaking to school/LA staff than my own friends. My only advice there is that finding a couple of other SEND parents to chat to at the school gates has been a godsend. Nobody else (family, colleagues, etc) really seems to have any idea how all-consuming it is.

I have a child with an EHCP in year 7 with additional needs rather than complex. I totally get the watching an app in dread, daily (I jump out of my skin when my phone rings in school hours - so much trauma from so many negative calls/meetings from primary.)
I'm working again, but self-employed. There is no way I would have been able to hold down a job working for someone else, mentally or physically over the last few years.
The looming transition to secondary and the senco from primary's negativity about it sent my husband into depression and sent a torpedo into our previously solid marriage; still waiting to see if we can work things out.
I'm very used to that cold feeling: you feel you are on the outside as everyone around you is living a typical/normal family life and then the rage when well-meaning people tell you there is no such thing as an average kid, when you are literally surrounded by families with average kids 🙄
Wondering, will my child who is the size of a small adult have a public meltdown today or not?
To be able to casually drop your kid off at brownies/summer camp/breakfast club without a backward glance like most parents do is an unimaginable dream.
The massive irritation when people groan that their kid stayed up till ten, causing them much stress, when ten is a super early night for yours, or that their 5 year old has started bedwetting for a few days when you have an 11 year old still not close to being reliably dry at night.
It is also challenging for me to relate to friends when they want to tell me that their children have ADHD or are 'definitely on the spectrum somewhere' but (and good for them) are doing ever so well in school (with virtually zero support needs), socially are getting on well with lots of friends, and have many varied hobbies.
I know what you mean about wanting to be private. It particularly irked me that the EHCP included details of me having a failed induction and C-section. I knew that half of the teachers in the school would have seen it. Just a small thing, but it was my personal medical details!

@Signetsarah the only one hijacking, and frankly being a complete arse, is you. You have told everyone who doesn’t have the exact same experience as you “professional victims” repeatedly, and been nothing but condescending and sneering.

OP, I get it. The constant, relentless grind of SEN admin is exhausting. You aren’t alone. It’s a system designed to make it as hard as possible to get any support in the hope that you’ll stop asking so they won’t have to cough up the money for any adjustments.

My 10 yr old was assessed as being between 4-8yr old by SAL, he has serious OCD behaviours, sleeps less than 4 hours a night and has developed a tic disorder at 9.5 yrs old. He used to be popular, all the parties and well liked. He is now isolated and talks of suicide.

I've just sent the email asking for assessment, I thought his school had done it over a year ago.

His last school recognised he needed an ehcp in 2020 DURING LOCKDOWN. As a result they sent so much information to his new school, because during 2020 he had the fullattention of every SEN, SAL and was even seen by 2 educational psychs? They gathered ALL the info needed but due to DV knew we would be moving to a different county.

We moved in 2021 and nothing. I found out a few months ago that his school is claiming to be gathering evidence, THE EVIDENCE HIS LAST SCHOOL ALREADY COLLECTED.

All of the last schools work is useless now, they spent thousands

Yeah it's a fucking joke except it involves my sons life

I get it. My most complex child (before she went to residential school) had input from CAHMS. I’m autistic myself and I hated the constant intrusion of this person sitting in my house saying ‘oh dear’ when she had no advice and no answers. I would have found it easier to cope with without her there!!

We were refferred to AMHS 4 years ago for my eldest. Nothing.
He's 11 now and his independent/specialist school provided what CAMHS should have.
This is why an EHCP matters

Thank you! I don't think MNHQ would allow the thread if I used the words I really wanted to

It’s the volume of meetings and paperwork that results in so little that’s hard. I get tired of people wanting to meet at our home because it really is intrusive and exhausting. I often wonder if we would have been better off not engaging at all.

To be able to casually drop your kid off at brownies/summer camp/breakfast club without a backward glance like most parents do is an unimaginable dream

This is the hardest part for me

Its is a very hard gig. My son is non-verbal, intellectually disabled and is autistic. I am in Australia and the system is different here but we were able to go private and his private school is outstanding, I get calls but only when absolutely necessary and they go out of their way to facilitate. We get respite and pay for more of it.

I work and have a career - professional services and I have tailored the client list deliberately so I can still have one. There is a lot I can't do but I do have one. Husband travels a lot and I have an older DD who has been an amazing older sister.

So we are on the very lucky end of things. But the 24/7 thinking never goes away. You can never just do things, I have to slot things into times so they get done. Its a life-long responsibility as he will never be independent. You have to take your moments when you get them.

But I hear you. Solidarity

Oh and further, home-schooling was never going to be an option. I am not a teacher and could no way meet his needs. Or manage it and parent. It would have killed me. No matter how much I love him.