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.

How is this comment in anyway helpful?

I feel you OP. Tried to home educate for one year because my son refused to go to school. It's nothing I recommend. They need social skills not just academic (in my son's case not really academic skills but basic skills). It's really tough but it does get better when they get older. I'm a sahm because I couldn't possibly hold down a job while being available at all times for my DC (and yes you're expected to come and fetch him very often) who needs help and assistance with everything except the actual physical tasks of eating, getting dressed etc. That's what people don't get because they look at him and thinks that he's able..although his disability is there just invisible.

Also if I home educated then the actual education system would be minus a teacher in a subject where there already huge shortages of staff. It would be lose lose.

DD has managed the year 6 to year 7 transition ok because I threw every resource I had at it. So hopefully I won't need to. But I think even my friends, and my teaching colleagues, would be astonished at what was necessary to achieve this cautious optimism.

Yes and surely this should be a safe space for her to vent? Who wouldn’t be frustrated at the inevitable MASSIVE loss of freedom, autonomy, and finances that being the parent of a SEN child entails? It’s brutal. Doesn’t mean we love them any less but my god it’s hard and we aren’t superhuman.

"I constantly feel scrutinised and judged and like nothing I do is enough."

I know that feeling. I will say that as my son has got older ( now 18) I have realised how bloody good I am with him and the judgement of others has bothered me less. Although I still sometimes have run ins ( politely)with professionals I also think they treat me with greater respect.

We have a child who had lots of difficulties with emotional regulation and behaviour, but stayed in mainstream. Primary were mostly supportive but secondary was an ongoing nightmare. We had frequent late evening calls and meetings, threats of exclusion etc.

They did move schools at 14 which was both better in that there was more support and understanding, but worse in some ways as one of the school managers just didn't get it. My DH wfh and he became extremely stressed with frequent calls during the day. I advised him not to answer since they were the schools responsibility till home time, but he found it difficult to do that.

So I do understand. I was lucky in that I worked a busy job that meant I couldn't dwell on it all the time, but yes, school caused massive stress for us for a few years and the meetings were endless. Our aim was to keep them in school though, and we did succeed in that, for what it was worth.....

To add, in a family with fewer resources and less understanding of the system, our child would have likely ended up in a PRU and then out of education. We were determined that would not happen.

A child would still need all those therapies and huge amounts of support. Home education is not the solution. It would be far worse for op.

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)

If the system worked the way it should, there would be much less frustration. Children with complex needs change your life in ways you just can’t imagine, the sheer amount of admin, meetings, professional involvement for the smallest amount of support is incredible.

In the past fortnight I’ve met with social work, advocacy services, education (x3), SALT, Ed Psych and CAMHS in preparation for a multi-agency meeting next week. I’ve also had my DD at home for 2 days because she couldn’t tolerate school. And I’m one of the luckier ones because at least services are involved. Holding down a full time job is hard work and possible purely because of my very flexible employer, who really gets it.

And yes it’s frustrating that most of my DD social life needs my involvement, that she’s up till all hours of the night - and I’m up with her, that finding a decent level of education is very hard work, that professionals have such low aspirations for her. It’s frustrating that I need to think ahead for every thing we do outside of home, that we need to be prepared to abandon a much planned activity because she can’t cope, and then deal with her disappointment and my sons disappointment and her feeling guilty because he has missed out too. It’s frustrating to know that extended family members don’t get it and silently judge the way we raise our kids. It’s frustrating that my marriage didn’t survive the stress and pressure of caring for my DD.

I love my kids with every fibre of my being, I fight for them every single day but my god frustration doesn’t begin to cover it.

What’s that?

Why are you attacking every single poster who’s just empathising? The poster stated she is looking for people in the same boat. You’re being weirdly argumentative and rude.

Op i know just how you feel. My ds attends special school. We had such a battle getting him in there but the admin and pw still never ends. I now work part time and never have any money for myself. I once attended an autism coffee morning for some support rant but then was like why do I want to talk about this when I could be doing something for me?! It never ends. We never have holidays or days out. Ds can't cope with them. I regularly miss my old care free life. I really wish my child wasn't autistic

After carefully reading the OP I think it's quite obvious she isn't looking for advice, just empathy, a space to vent.

I'm really surprised that you thought suggesting home education was appropriate when it's clear all that would do would be to transfer even more responsibility onto OP's shoulders and leave her with literally no time at all for herself?

Home education doesn't just mean keeping your SEN child at home and abandoning any idea of them acquiring skills, independence. OP would need to spend lots of time planning carefully tailored educational activities, then carrying those out with her son, and she'd need to continue with the various therapies etc it's been deemed will help him to develop.

I often worry that some people just think home education is 'keeping their child at home with them' and they are not them actually educating their child at all

No experience myself but best wishes OP

You sound unbelievably thick and ignorant. I suspect you’re on the windup judging by your username, haven’t you anything better to do at 5am?

It is blatantly obvious that OP was posting for solidarity and support rather than daft suggestions like ‘can you home educate’, as if the OP wouldn’t be aware of it as an option. She is also a person with needs and feelings, and deserves some time for herself whilst her child is safe at school for a few hours.

I'm really surprised that you thought suggesting home education was appropriate when it's clear all that would do would be to transfer even more responsibility onto OP's shoulders and leave her with literally no time at all for herself?

It also means the local authority can just step back and leave her to it instead of meeting their legal duty to provide her child with an education.

I went through this years ago and I can totally relate.
I found it did get better.

But the invasion of any sort of privacy was awful to deal with.

I know how exhausting it is and I don't think our situation was as intense as yours.

Sometimes I think teachers, social workers, attendance officers etc are so focused on the system they don't actually realise the damage they're causing.

Do you really need all of the phone calls and meetings? Are they actually helping anyone?

It is OK for you to say that the quantity of contact is overwhelming and needs to be reduced.

Request school phone calls only if absolutely necessary.

Perhaps a short written summary of his day or week to come home with him that you can look at, at a time that suits you.

Are all the meetings actually achieving anything? Will anything actually change because, as we know, SEN doesn't go away just because they talk to "mum" about it. If there's meetings going on, particularly the intrusive at home ones, that you don't feel are achieving anything, then speak out and tell them. Stop or reduce them.

Our school once asked me what they could do to help. I said to leave us alone to deal with things and to know we will ask them for help if we need anything specific. It actually helped.

Remember you can only do what you can do. You can only control your actions not others.

I think the problem is with SEND (as with healthcare) that there's no "case management" so there's no-one actually in charge. Hence all the meetings and calls from people who don't speak to each other and don't know about any background or any details of other treatments/therapies/arrangements.

The LA is supposed to have a person allocated to each EHCP.

I have never met or spoken to ours. They're hardly going to be co-ordinating anything on our behalf! Especially as LA people don't last long in jobs and are constantly off sick or on leave.

If there's meetings going on, particularly the intrusive at home ones, that you don't feel are achieving anything, then speak out and tell them. Stop or reduce them.

Absolutely this, I made it clear that I didn’t have time to just keep talking about the same stuff over and over again so unless they actually had something helpful to offer I wouldn’t be attending meetings. So while I’ve had a lot of meetings recently, there’s some very clear goals and a wider plan to work towards. I can’t keep taking time off work for someone to tick a box.

I also have as few meetings at home as possible. I’ll either do them online, at the other persons office or at school - the only professional I see at home is the social worker because it’s easier for me.

I had a similar rant just this week. It's our annual review coming up. I had to fill out a parent form. Then two days later I got asked to fill lut a form on my sons views with him. So that's two hours gone, when you see the form. Then when I asked for copies of any reports that will be reviewed, they won't be ready until the meeting day. Which makes the meeting day pointless as none has read the reports, only my views. So that's another two hours, then I have to chase and follow up the changes.

Someone on twitter has 'meetings aren't outcomes' as their bio, so I really think this resonates with a lot of people.

I agree about the case officer thing too. My LA, each case officer has so many cases it's literally impossible for them to do any meaningful case management.

MN is feeling increasingly hostile to families and individuals with disabilities in the last couple of weeks

I couldn’t agree more, @EHCPerhaps.

Some people forget or don’t realise in 99.9% of cases if you EHE there is no support from education at the LA when DC with complex needs require therapeutic provision the vast majority of parents can’t afford to fund themselves and the NHS don’t provide or don’t provide enough of. Even the rare minority who have a small PB for EHE don’t receive everything they need. It is usually limited to a tiny amount compared to the needs of the child.

I have 3 DSs with EHCPs. 2 of whom don’t attend school. But I don’t and couldn’t EHE. I don’t have the money to provide the provision they need. Their bespoke packages are very expensive. Not to mention other things like DFG funding, carers, respite. So we remain in the relentless system where every agency tries to pass the buck and argues among themselves as to who is responsible.

Hi OP I work in SEND in a mainstream secondary and I totally get you. I have lost my cool several times with non educational professionals who seem to have zero understanding of how intrusive and negative they are being.
I was so shocked at first, and I'm a veteran of really difficult schools in economically deprived areas. My perspective is different from yours but I understand what you mean absolutely. Once or twice I have been speechless at the combination of terrible bad manners and just unreasonable behaviour from people who should be helping!
Also my lovely senior colleague always reminds parents of children with EHCPs that they aren't compulsory and parents can chuck them in the bin if they want to. I've seen some that are so poorly written they have a negative impact.

Also my lovely senior colleague always reminds parents of children with EHCPs that they aren't compulsory and parents can chuck them in the bin if they want to.

Telling parents that is a bit misleading. LAs can only lawfully cease to maintain an EHCP if the LA is no longer responsible for the child or young person or it is no longer necessary (in the legal sense) for the EHCP to be maintained. This is set out in section 45(1) of the Children and Families Act 2014. If the EHCP is poor, it would be better to support the parents to appeal than to tell them what your colleague is telling them.

You need to suck it up essentially it’s there for your child and to help.