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.

Thank you. My thoughts exactly.

I'm sorry its been tough for you too

This is why I never bothered with CAMHS . Never heard a single positive story

Op I completely get it, my child is complex needs also and however much I do love them it is mentally draining.
I hate the weekdays, I don't even get out of school until 10am most days.
They would never manage transport unfortunately.
And then they are part time, I have thought about home schooling but then all support would be gone and the little bit we do get I desperately need.

I constantly worry about the future, I don't get any respite and dont really have a life as I do most of the load ( husband work fulls time) and when he is at home he does step up.

I do have another child (adult now with learning disabilities and other Sen and is still in special education) but even though he has sen his sibling is much much more difficult and needs supervision constantly.

I love my children dearly and have done everything possible to make sure there getting everything they need but it has come with a huge cost to my mental health and carers just don't seem to get much support to help with that.
Oh other then a few groups that the council set up which most can not accsess because of there caring responsibilities.

I get it. We're clinging on by our fingertips in mainstream, but nowhere near the threshold for a special school place.

We don't have an EHCP because "school can manage his needs within the notional budget". But it doesn't look like managing his needs from my point of view. Or from his teacher's if the number of phone calls is anything to go from.

And I am so tired of the thinking all of the time - what therapy haven't we tried, what parenting change could I make, when can I book this OT meeting, who haven't I told about this test result yet etc etc.

And I'm a single parent so on top of that trying to support my other child who feels a bit overlooked most of the time........

Solidarity with parent carers feeling completely ground down and in desperate need of support. Also hear you with the wish to just be able to have the normal expectations of a private family or personal life.

MN is feeling increasingly hostile to families and individuals with disabilities in the last couple of weeks (coincidentally just as the government appears to be lurching in this same direction ) I’ve reported multiple posts on this thread.

This is meant to be a support site for parents.

shut up moaning, gawd knows wat your trying to achieve from this thread. Oh yea to moan! It’s your child, shut up moaning and get on with it victim!

Well your comment made me laugh as I've had a little sleep and feel better thanks to the kind comments from others.

I have a good reason to not have anything better to do on a Saturday night but you are quite pitiful. Hope you feel better now.

She hasn't asked for advice about what to do, she's just expressing that it's exhausting and intrusive and she wishes she didn't have to do any of it.

I can't change anything about the system, and I can't change the struggles my DD has and my sheer exhaustion. But hey, at least I can report all the nasty comments on SEN threads. I've got your backs SEN mummies, if only we all had the energy to make our own system 😂

I know you’re not asking no for advice but I did wonder if you could ask for all non emergency correspondence through email. Then you can look when you feel ready. Obviously this won’t change calls from school when you need to pick him up.
for meetings, if you find them intrusive at home, can you ask about them booking a room at a GP and say you want these limited to 2 a year or however many you think necessary.
The SEND code of practice says there must be 3 reviews a year but if you don’t want this on top of other appointments that’s ok.

Thanks everyone for your replies. I have read all of them and I hope I have thanked you all by replying or just in the reacts to the posts.

I hope those of you who are going through it can take some moments of joy.

And I don't hate anyone . There are many lovely people working hard for my child and I'm sure they are doing their best too. It's nothing personal and I'm sure they would wish us parents would sod off at times too!

I've had a sleep and will try to take some time for myself tomorrow.

Solidarity. I have 3 dcs with EHCPs. One completely out of school. A sixth former just getting through the days and low attendance. We have worked with autism, ADHD, anorexia and OCD. Visual and auditory hallucinations. We’ve had a multitude of CAMHS appts for years (we didn’t have them for a long while, which is why things got so bad. In fact, one of my children was going to be put on a CP plan due to lack of professional involvement from CAMHS. I think there is a form of trauma from the constant waiting rooms, form filling, meeting new professionals. Have just started a tribunal case as the LA won’t name a parental preference, despite evidence from CAMHS. DC very upset and just wants to go to school. Even if I felt I could, she does not want to be homeschooled and just wants to be ‘normal’.

its ok to occasionally have a moan about how hard this all is. Also I think the system has been weaponised against parents. I manage to work part time and also work in the ‘system’. I hope my lived experience makes be a better person to work with for the families I support.

I hear you!! I’m sorry to say that if you don’t have a child with extra/similar needs then people don’t see the impact. It’s exhausting, I’ve aged like 10 years in like a year (this year has been the toughest).

I know what you mean, it’s almost like you want a moment where you can forget, where you are not defined by your child’s needs.

I have so many forms to still fill in for different things. It’s just mind-blowing.

I’m also fed up of people thinking it can be ‘fixed’ and giving me parent tips, or always asking me how things are. I don’t want to talk to people. I don’t have the time or energy.

big hugs.

I know you’re behaving as the lowest of the low for attention but you’re not even doing a good job of that.

Hi op, is it more you feel you need to be there? I have a complex ds in send school. Next week I'll be up there at ĥis physio, but I could say no, ring me after etc.
With regards to picking up, they kept sending him home saying he wasn't himself... I've now said unless he's physically sick I'm not picking him up. Some of these sen schools do seem to be quick to phone, probably because the classes are hard to manage.
I appreciate saying no to meetings can make you feel like a bad mum, but looking after yourself is important too. If you're not needed there and can be done in a phone call, do that

You can ask for early help to reasses the smount of respite you get
I now get a fairly decent packsge of respute for my complex needs teen ,which includes two over nights /month , 5 hours every other saturday in a special needs club and a day a week every school holiday in the same club
This did take years though and it can be very area dependent whats available.

I am another parent of 2 children with v complex needs..I hear you absolutely!
The endless pushing, form filling and fighting your corner just to survive. You get so fed up of repeating yourself to people over and over and accounting for what you do and how you do it. And I spend lots of my time sorting out things that go wrong such as medicine shortages and equipment failures along with rectifying errors made by others in medical assessments etc.
And in addition because the youngest is so complex he only goes to school 4 hrs 3 times a week and needs a trained carer to go. So school days are harder work than keeping him home as we also transport them.both. In fact we are lucky because all our carers are lovely but as the older one also gets some hours to cover the days he doesn't go to college my house is a whirlwind of carers and professionals coming and going. It does feel v intrusive at times
After 20 yrs I feel burnt out some days but that is not an option so you get up and go again. And in truth I love my life on the whole but nobody can understand the demands of it unless they live it themselves.
So no answers but solidarity !

I have had that too! Saying hes ill and then when he gets home hes bouncing round the house.

🙄

Someone with your comprehension reading skills should not be home educating btw.

Yes if only we could really crack the art of teleportation ( star trek style) and could all pop in to visit each other or have a massive get together for support . Though we would all be too knackered probably ! I find the isolation the worst bit of all.

But OP reached out for support & to feel like she’s less alone in a world that doesn’t listen - and you’ve just proved that people really don’t. It’s not about playing a victim, but looking for solidarity.

Many SEN parents aren’t in the privileged position of being able to home educate.

@ImonlyhappywhenitrainsI also had many personal details about myself and my family's difficulties in the first draft of the EHCP which was sent to the school general email address.

I work at the school! I was mortified!!

However the (kindly, competent) Head's PA found it and made sure only the SEN dept got it and the LA removed all the personal stuff in the final EHCP when I asked. I'm sure GDPR applies. It must.

OP, solidarity. I have what sounds like a much milder situation (these days at least) and no-one in my family gets it at all. Except DH and he has left 99% of the paperwork to me.

The burden on mums of this stuff is enormous.

When I hear government ministers bleating on about worker shortages it just makes me roll my eyes. They are losing the time and talents of thousands and thousands of women to the SEND and healthcare "systems".

You sound more frustrated with your child and the way they’ve changed your life than you do with any sort of system (which is completely understandable)

@ASimpleLampoon

I hear you.

it’s so so hard.

Solidarity x