Been called to court, I can't go, what can I do?

[Nameynameynameynamechange]

Scotland, if it makes a difference.

I've been called as a witness. Sent back the paperwork saying I'll be unable to attend, they have refused.

I have a daughter with complex medical needs, she attends school very part time (an hour per day) but that's the only time she's ever away from me. The court date is in the summer holidays too so I can't even pop in while dd is at school.

There is absolutely nobody else that can be with her (she has seizures), I can't take her with me because they can be stress induced and I don't know if she would be allowed to anyway.

My understanding is that if I don't attend they will just come on the day and arrest me and make me attend.

I'm so bloody stressed.

If I withdraw my statement would it mean I don't have to go?

I don't know what do do.

After spending most of the day on the phone it looks like I'll be able to do a video link from my house with someone from the court here with me. Just waiting for the final sign off but its looking hopeful. Which is fine, I won't be in the position of the after effects of stranger caring for dd for the day.

I have also asked if the funding from the council could be used for a nurse, they are going to look into it and get back to me this week, however the allowance I get is probably about half of the hourly rate for a nurse so I would need to top it up if I am allowed it.

I've emailed SS but haven't heard back yet.

So no definitive answers yet, but on the way.

FYI I'm not paranoid, what an odd thing to say, I know dd, I know how she reacts, I know what she can tolerate, and I know how things impact her. Her being in a stressful situation for a day doesn't just impact that day, the fits and tics can ramp up for days and weeks afterwards. It's not paranoia, it's my life.

With the school thing they can't train anyone unless she is in full time, I can't have her in full time unless there's someone trained. That's why I'm holding out for college, she will be going for short periods over the next 2 years, and they have staff there who are trained and able to cope, dd will know them by the time she starts full time, and she will either be on the waiting list for, or already have, a dog by then, so life will change a lot at that point.

That’s wonderful news!

They told me they would consider me giving evidence by video link, but I heard nothing since. I have no problem giving evidence but I can't do the impossible and magic childcare from nowhere. It's so stressful x

It sounds like a really productive day. Well done!

Could you call your local children's services and ask?

What an absolute ball ache I am so sorry it’s this hard

it does sound like a productive morning though. Hopefully your getting somewhere

To paraphrase my teenage children

tell me you’ve not got a clue about caring for complex needs without telling me.

it’s the situation millions of carers are in up and down the country, just hoping nothing bad happens to them

@Nameynameynameynamechange

OP

Would it still be useful to touch base with Epilepsy Scotland about the Youth Support Workers, so that you know that there is always someone who is there to help you? You do so much already and it would be good to know that you do have assistance of some kind.

I see that they offer an online youth club on Tuesday evenings too, which your daughter might enjoy.

https://www.epilepsyscotland.org.uk/support-for-you/youth-service/

I really hope you get what you need with your daughter, your situation sounds incredibly difficult.

Well done OP
That sounds sensible solution

Have you ever cared for a child with potential life limiting illness?
My ds is older now so things a bit easier but when he was younger there were literally two people who could care for him- myself and his sister.. even if he was in Hosptial the staff didn’t have the experience to deal with his required equipment so I stayed 24hours a day.
When I ended up in Hospital a few months ago his sister had to take leave from work to take care of him.
Not every nurse can care for kids with complicated conditions.
It simply isn’t that simple

I have immediate experience of life limiting illness in childhood. Requiring multiple hospital stays, nurses and all that comes with it. SEN classes in schools. It's an incredibly lonely place in life, but, and I may be wrong, when in these situations the full time parent / carer can start to have an automatic response of 'no' or 'that won't work' or 'we can't do that due to xyz..' when sometimes, not all the time but sometimes you can.
Once the autopilot of the above kicks in and you get stuck in your ways, it becomes a very lonely world. Then you start convincing yourself (and others) it is what it is. That's life for me / my child. When it doesn't have to be. Medical needs aren't linear and the support is diabolical. But sometimes you have to say yes to some things. Even if there is no plan in place. Find a way, use those times as the catalyst to make change. Don't shoot down every suggestion or avenue. The ridiculous ones, of course. But not all the suggestions are ridiculous. Because staying in 4 walls with no back up if you became ill OP is not good for anyone.

What happens if you get pneumonia and need a weeks stay in hospital. What happens if you became critically ill. Saying no all the time because you really can't see a way, over years and years really isn't practical. There has to be plans B and C. Maybe with a lot of work and research, there could be a plan B or C when the autopilot response of 'no' or 'that won't work' is slowly lifted over time.

Good luck OP. It's a tough & lonely world.

Well done OP!

My experience is in the English court system. This sounds like a sensible solution. Be prepared for a LOT of waiting around. It could well take many hours, or the hearing could go off to another date.

Attendance at court in person or remotely, is not a pick and choose affair. You must go. I am astonished at those who don't understand this.

Longer term, I do think you need a Plan B for your daughter's care, I really do.

Yeah, just make up some shit. Who cares anyway, it’s just a court.

I'm glad you have away forward.

Don't school get the money for her whether she is in or not? Ours does. I wonder if they are just choosing to reallocate her budget to others while she is not in. I don't know how Scotland works but from my English perspective this sounds more like a made up rule (by LA or school) than a structural one. It also sounds like disability discrimination. Other children don't need to meet attendance criteria to be kept safe in school, so she shouldn't either. (I have a child in school PT with quite complex needs.)

It's incredibly tough and lonely when you have children with special needs, really hard to get any kind of support. I feel really sorry for OP.

I've been watching avidly in the hopes of an update and have been quite frustrated at some of the comments on here.
It's hard enough being the parent of a teen struggling with autism and with epilepsy as well, it sounds like your life revolves around her - and to basically be told you aren't trying hard enough takes the fucking cake.

Well done OP 👏 You are an absolute star. Fingers crossed for you it gets sorted out smoothly.

Thank you all.

I'll definitely be contacting epilepsy Scotland, I was going to do it today but just ran out of time. That's on my to-do list tomorrow.

Wrt to school the whole thing is just a mess, she gets support for her autism while she is there, but they can't support her fits. I'm not sure what it's like elsewhere in the country but about two thirds of the support staff have been cut from the schools around here.

From my understanding to get the funding she would need to be in full time school. She is enrolled at the school as a technicality, just so we can maintain the short time per day, but she is registered as home schooled through the council.

The school say for her to be in full time she would need 2:1 support, but she would only get funded for 1:1 support. At the moment she is in the learning lounge for an hour per day with me outside the school which is basically her 2:1 but I'm going to try and revisit this, although it may be difficult as school ends on Friday here.

It's just so tough for families like mine, either you get the funding, but not the people, or you get the offered so much support but that isn't accepted by the school, or you don't get funding at all, or its woefully inadequate. Then I think - well why would the government bother making things easy for us when they can chuck me £81 a week to just get on with things by myself and figure it out with no help.

This is why I've got into the rut of sorting everything myself and just doing what I can. I know it sounds tough, but we are in such a routine, this has been our life for so many years now that it's second nature, and it doesn't feel difficult.

Some of the responses have been frustrating, as if I can magic up people to help out, it's not like I'm asking for a babysitter for your average 5yo, being called selfish and paranoid also wasn't very pleasant either, I'm not selfish, I want to give evidence, but I'm not compromising my daughter to do it (although I won't have to anyway thankfully) and being concerned about my daughters health isn't paranoid either, it's absolutely valid, but most people have been very helpful and understanding, and helped me make a plan to move forward for this court situation, and then beyond that too, which I'm thankful for.

I have just got stuck in a rut of doing everything myself, which I understand I need to get out of, and am making steps towards that now.

Would a school like this work, OP?

Can you use a qualified nanny /childcarer from snap or mind or other sen agencies

Or get A registered carer in fortnightly to give you a break / have back up if need to do a hosp app etx

My friend has carer in 9/3 every other sat. Her son is autistic and non verbal and strong at only 9

So the same person so dd will get a. Chance to know them

Sounds sadly you will need to go to court

@Nameynameynameynamechange

It's such a difficult time for you, OP.

I was wondering whether input from a Consultant specialising in epilepsy would make things easier for you in that he/she could advise on medication, just in case there is something which would limit the number of seizures she has.

My father had epilepsy, but I gather that treatment has come on a long way in recent years.

Would your daughter be able to be referred to the Royal Hospital For Children & Young People in Edinburgh, in case they could help?

I'm not sure how services are organised in Scotland.

https://children.nhslothian.scot/the-rhcyp/