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.

@purpleblue2 the systems that are intended to support often creat barriers for children and their families making a difficult situation intolerable. The attitude that parents should accept minimal help for maximum effort leads to children’s needs going unmet, because parents should just be ever so grateful, suck it up and get on with it.

@ASimpleLampooni totally hear you. It’s exhausting constantly fighting the system to get basic needs met and trying to advocate for our children. I gave in and started home Ed, it’s not perfect but has taken a lot of the pressure of having to deal with the broken education system everyday.

IMO you really don’t need to “suck it up”, what you do need to do is do a sort of internal audit of what is helping and what isn’t so you can judge how valuable the process really is. It can be quite depressing BUT it also allows you not to become emotionally involved in every part. I’d really recommend asking for meetings not to be in your own home. It’s a cost saving exercise on the whole rather than necessary for your dc. The LA are perfectly capable of booking a meeting room, or renting one if needed.

I had my son with complex needs home for 6 months with no education or other support because despite legally having to the LA weren't providing anything. He is a child who now has 3:1 support. I love my son but it wasn't good for me or him. I had to keep going but it took me a long time afterwards to recover from the exhaustion.

This is us right now. My son has been out of education for months now and the process is so incredibly slow, he needs 2:1 support and we're waiting for his EHCP to go through and then hoping he can stay in mainstream.

He is desperate to go back to school. He just wants some normality back.

@Kirbert2 if DS is compulsory school age and the LA has refused to provide suitable alternative provision, have you looked at a pre-action letter for section 19 provision?

Apparently, they will soon be providing a tutor for 1 hour a day.

I'm constantly chasing it up but nothing so far.

@Kirbert2 1 hour a day is not a suitable full-time education. The LA knows this.

Send the relevant model letter from IPSEA’s website to the Director of Children’s Services. If that doesn’t work or you have already do it/threatened JR, you need a pre-action letter. SOSSEN can help with this free of charge. Although there is a wait, so you may want to look elsewhere if you can afford it or if you would be eligible for legal aid. Then, if the pre-action letter doesn’t work, judicial review proceedings will resolve the situation - for JR proceedings, DS can be eligible for legal aid in his own right.

I hear you. I just want to wake up in the morning and just think of ME, not someone I have to wash, dress, hope they’ll actually go out with their carer ( adult now). I want to not hear all the fantastic things people are going to do when they retire. Sorry if this all sounds selfish but I’m so tired. I don’t want to feel different to everybody else but I do.
And please don’t say “ have you thought of respite” to me.😔

Solidarity, OP.

My 'child' is now 43 and I'm saddened that all the battles I fought for him are still being fought by those coming up behind me.

ETA: @Sahara123 Oh, I'm with you on the respite thing. I'm sure there are many people who think it's an easy fix, but I recall a parent saying that she felt it was much easier to adopt her son than it was to get respite care for her daughter...

Yeah, it’s shit. Endless tick boxing, endless worrying. You’d think the system would be there to support but seems there to hinder us more than help.

DS2 had an EHCP and LA funded internet school as well as tutors for English language and literature and history in addition. Plus therapy from SALT and OT.

I had to be there and be unpaid LSA and there was the weekly disruption of tutors/therapists but they were recruited by the family and not spies gathering evidence to use at the next AR to cut support. I actually enjoyed their home visits as I got time off and could speak with a supportive adult who had my son’s best interests at heart. This is far from the horror of being forced to deregister and HE a child with high needs without support.

Best of all the constant and often adversarial contact stopped. Once a year AR to rubber stamp continued support.

I won’t lie, on a personal level I became deeply depressed that my hope of any independent life was over, but the day to day stress was killing me. Coping with my child who I loved was a doddle in comparison once the constant stress of dealing with the system was removed but only because internet school reduced stressors and he received 1:1 support with areas of learning where he still struggled and with social skills.

And I know the LA only did this because they had already been forced to pay for specialist school at tribunal for DS1 and this was a strategic move to get a cheaper option.

I had to be there and be unpaid LSA

For anyone else reading, the LA cannot force parents to do this. Parents cannot be compelled to organise, deliver or facilitate the provision. The LA is responsible. They must fund someone to do this role if it is required.

I remember sitting outside my other child’s primary crying behind my sunglasses as I watched what should’ve been my disabled daughters year going off on a trip .

I know that. I was tired of fighting but appearing to win but actually losing. It costs emotionally and financially and practically. Compromising was the least worst crap option. It was crap but less crap. I didn’t want an LA employee in my house for hours every day and for safeguarding reasons I had to be present anyway. And my son was disintegrating in his placement and it was constant stress for me. It was a cop out that allowed me to survive and my son to thrive (or at least survive with his mental health intact and achieve closer to ability and progress to 6th form and uni).

I fought all the way for DS1 and when his specialist failed. SOS!SEN started JR and he got 5 GCSE tutors, SALT, OT, community psychiatric teen support on a weekly basis. Made no difference. I’m still full time carer. He’s still unable to interact with anyone but immediate family.

@PocketSand and that is, of course, your choice. That is why I said for anyone else reading. Although it wouldn’t have to be an LA employee and the LA cannot insist parents are present for safeguarding reasons. It is not EHE.

I am sorry it's so hard for you still. I know only too well the battle for respite. DS has some, but rarely gets all his hours due to lack of carers

I hear you.We have an EOTAS package and whilst everyone is lovely I get so fed up of my home not feeling like my home as they come here to work with dd. I loathe having to communicate with the Local Authority but don't really have a choice as if I didn't nothing would get done. It's getting towards end of term so it feels worse just now, I imagine I will feel less fed up after the fortnight off.

What's terrifying is adult services or lack of them. It's feels intrusive now but you get dropped like hot potato when dc hits adulthood and left to fend for yourself with dc

Can relate to this. My other child is great with him, but I feel sad at the difference in opportunities for them both

Hugs to you x

Believe it or not I was just going to say this is what I imagine will happen later. Don't know whether to dread being completely alone or look forward to not having the interference

The thing is though that opting out of the system (with a history of being willing to fight) ironically led to greater choice. This is obviously not the way it should be.

My ASD/ADHD son was doomed to fail whilst I became more stressed.

His mainstream school wanted to put him in the lowest sets because that’s where the TAs were. He actually sat maths GCSE 2 years early and got A*.

Staying and fighting (even if I could summon the energy) would have been the wrong way to support him to become an independent adult.

I find the lack of a path difficult. We don’t know where we’re going or if ds will be in college from one year to the next. I find the ehcp review a totally pointless exercise.

Interesting that there are 50 people who voted that aibu but not only about 2 have commented. Bet they are all SLT 😂

I get it too. I have a very young child with complex needs and life is one long round of appointments, hospital stays, appointments, phone calls, appointments, phone calls...it feels like a never ending hamster wheel. We qualify for direct payments but can't actually find anyone to fulfil the hours. If I had to home educate I think my mental health would go to hell in a handcart.

Today alone I've discovered one of his epilepsy meds is out of stock nationwide (again) and so is his feed. I have enough of his food to get me to Tuesday morning then I don't know what we will do. I am sick to death of people staring at him when we are out, I actually said out loud today "Stop staring at him" to some one who was old enough to know better, some beaky person actually walked into a tree the other week while turning to stare and I might've laughed, just a bit.