Or is there a solution I can't see?

[Emeraldiisland]

Two weeks ago my 16 year old DD had an unexplained seizure. She is okay now but the hospital advised she is not to be left alone until she sees neurological team (5 month wait).
Admi we don't stick to this all the time, as she obviously doesn't sleep in our room or anything but in the day either me, DH or eldest are with her.
She wants to go to college in September and DH said to me I will have to take her and pick her up every day but I don't think I can. To start with it's a round trip of 90 minutes so 3 hours a day and second what do I do with my son?
He's starting school on a very reduced timetable but I can't get him in for 8:45 and get my daughter to college for 9. I mean l could drop her off early but I'd probably have to leave at 7 and drag my son along (totally ready for school) to make sure I'm back in time for school.
DS will be shattered and that leads to huge meltdowns (he's severely autistic)..
I will then have to take him with me to pick her up. I can't leave him at home as DD1 and DH will be at work.
The only solution I can see is to defer DS until January and pray she's seen by then but I fought so hard to get him starting in September and tbh he needs some routine and since leaving nursery he's become quite clingy so I was hoping school would help in that way. He's going to be at a disadvantage when he starts school due to addional needs but think he'll be at an even bigger disadvantage if he starts when the class is established, they all know the routine and have friends and he is new and on his own.
Uber isn't going to be practical until January as the cost will be too much and obviously going by bus could be a risk if she has another seizure.
At the moment options seems to be
Take her to college super early
Risk her getting the bus
Defer DS (which is easiest but I really really want to avoid).
I don't think there's an answer but if anyone can think of something please let me know.

Just because you’re a sahm doesn’t mean your husband has zero parenting responsibilities. Get him telt!
All this he told me, he says I have to - shut down that shit now! He is your partner not your boss. He still has a responsibility to his children and this is an impractical situation that he needs to help come up with a solution for. Time to stand up for yourself!

I think some posters are being a bit unfair to your DH here. He’s working to provide for himself and at least three other dependents. It’s not that simple in most jobs to tell your employer you’ll be coming in late until further notice so that you can do school runs even though there’s another parent at home.

Is there any possibility you could pay for a private hospital assessment for your dd to reduce the wait time? Or go back to the GP and ask if there’s anything they can do to speed things up considering the impact on your children’s education.

Are you entitled to any LA help with transport for either child?

The consultant saying don’t leave her is unrealistic.

My son has severe complex seizures but I can’t be glued to his side 24/7.

Either defer her a year and she accompanies you wherever you go, so she doesn’t feel left alone.

If she had a seizure at college, you’d still be 90 minutes away from her so they’d have to call an ambulance, therefore she may as well catch the bus and carry a medical alert. I assume she would have been happy catching the bus before she had her seizure?

Speak to your son’s school to see if they have a breakfast club that starts early. Ours start at 7am. Or if there is a parent/childminder to drop him early.

Good luck, I know how scary seizures are.

Is the bus a private one arranged by the college or is it a public one? And is it just one direct bus? If it’s just one bus and likely to be the same driver every day, I don’t think the risk of your dd coming to harm is a big one. She could sit at the front near the driver. She might have a seizure again at some point in her life or she might not, but the outcome is unlikely to be massively affected by whether or not her mother is present.

I know this probably won't help much, but my son had an unexplained seizure at 17. Just one and never happened again. A nurse friend told me it's quite common for children to have just one and never any more, and no explanation is ever found for it. I know exactly how you're feeling and yes we watched DS like a hawk for months afterwards!

Speak to the college, they may well be able to offer support.

Do you have anything in writing to say dd needs 24/7 care, you could try and claim PIP for her and use that money for taxis (although the wait times etc may make that impossible, worth a try though). There's also funding you can apply for through some councils to get support for a few hours a week, which you could use to get a carer on the bus journeys.

Definitely a medicare bracelet, also set up her phone so she can just press one button to call you, make sure her location is on at all times as well.

I also have a dd who is autistic and has seizures and its exhausting. I'm up every hour in the night, she's in very part time school and I have to drop off and pick up because she just can't be on her own. I feel for you op, it's not easy (although I'm single with no help, you just have a dh who's just decided he won't).

It's also worth talking to the college about your daughter's timetable. In colleges students rarely have a fully timetabled day - she may not need to start at 9 every day.

The consultant saying don’t leave her is unrealistic.

We were told the same but I took it to mean within reason you don’t leave the child on their own. Life has to be lived still and there are lots of other important things to consider in the OPs situation.

I think it’s unfair that it’s all on you just because you are a SAHM. Your son’s needs matter too. Either your DD wears a medical bracelet and gets the bus, or your DH applies for reasonable adjustments at his work place to be able to drop her for the next few months.

She goes on the bus. She won't be alone, members of the public will be around her. She should carry a card with her information on it in case of an emergency. It's safer than her being at college alone in the morning.

Personally I'd contact the bus company. Presumably it will be the same driver/drivers doing the route each day so maybe they could alert the drivers to look out for her. We take the same bus route regularly and see a lot of the same faces and the drivers know all the regulars and look out for some of the older/less robust ones as much as they can (as do the other passengers).

It is a difficult situation because obviously you are going to worry until such time as you get your answers.
I too think its a bit unfair of pp to say DH problem. He may not be able to have flexibility in his job, he is the sole bread winner so needs to work. Realistically she needs to catch the bus. A colleague I work with has seizures and her medical info and hubby contact no is accessible from her phone without the need to unlock it.

This is exactly what I was thinking, she’s no less alone on the bus than in college all day. And once she starts she’ll probably make friends doing the same route.

And she’s unlikely to need to be in at 9am every day either, college timetable aren’t usually 9-5.

Your husband may be working outside the home, but unfortunately he needs to take some of this on - or at the very least he has to try!
I don’t think you should defer your son, but your daughter may have to if nothing can be sorted for transport right now.

Phone the consultants secretary on Tuesday morning, you’ll probably have the appointment before the start of term. £200/300 last time I paid to see one.

Can she apply for disability allowance - they may be able to fund cost for travel similar to what they do for access to work.

I would speak to the hospital again to tell them about this dilemma, it does seem very over the top and unworkable to have to watch her for five months, and if this advice has been wrongly given it could impact everybody’s mental health significantly both in terms of anxiety and impact to education and genera stress levels and exhaustion , it really needs to be clarified/ second opinion sought
I would also say though, ambulances take hours to turn up sometimes at the moment, and it’s worse over winter. If it really, really is that serious that she genuinely needs to be watched and got to hospital urgently if she has another seizure, given the fucked state of our ambulance service atm I’d be saying to defer for a year so you can take her by car. I really suspect that won’t be the case
also your husband sounds like a bit of a wanker.

Your DH is coming across as a total 💩

Agree with PP. DD will have to get the bus and I would pay for private neurology appointment if possible.

I would not defer your sons start date. Some options

Childminder to take ds to school.

Husband takes ds to school in the morning you take dd.

Arrange private transport (taxi?) to take her to school each morning. Then you pick her up in the afternoon.

Does your council provide transport in certain circumstances? Ours does.

How was she planning on getting their originally?

“ I said to DH I thought she'd be okay getting the bus but he said well you'd feel guilty if she had a seizure and you weren't there but if she has a seizure”

omg I think you have a “d” h problem more then anything else 😳

but to the problem,
she has to go on the bus from what you have said , it’s the only option. Yes it’s a worry , but she can’t not live her life in the hope her appointment comes through before next school year.

my dh is a bus driver , and once or twice they have had a medical emergency, they just stop and call an ambulance, comforting the person if possible.

I would argue and say actually she’s with a lot more people at that point who can raise alarm , then when she’s in bed by herself.

a medical bracelet sounds like a great idea

Having been a sahp at one point it doesn't absolve the other parent from doing stuff when there are unusual needs. He should do one set of lifts or some sort of help like take son to school and agree that with his work. Can you pay for neuro consult and mri to speed this up

Is she not on any medication? I personally don’t see the problem with leaving her get the bus it’s the same as her being in college all day without you. I will just keep in touch as much as possible and put a procedure in place for if and when anything happens.. like others have said get her the medical bracelet. I can see why your husband is divvying out this job you, but obviously obviously you are struggling with trying to figure this out and I think it has job as your partner to help you with this, you are supposed to be a team! So figure it out together he can’t just say what he thinks you need to do and then sit there and you figure it out that’s very unfair. He needs to meet you in the mail maybe pick one day a week or he starts a bit later. One day a week is not going to kill him or impact his job too much, but if he’s not willing to do that then it’s clear you do have a DH problem. I would sit with him and expect him to help you with this. if he doesn’t want to help, then you need to make the decision that she gets the bus and he needs to back off and let you do that. Instead of guilt tripping you which I think is really a low blow.

What does your daughter want to do?

It's easy for me to say, as I'm not the one navigating this with my own child, but "she mustn't be left alone" is not the same as "you yourself must be with her at all times".

IMO she is far more at risk by sleeping alone for potentially up to 12hrs without supervision or monitoring (pretty sure you can get seizure alarms and things?), than she is using public transport by herself at the two busiest times of day.

Contact the neurologist (ring their secretary) and ask for guidance. Also ask for a call from the neurology specialist nurse. I can't stand health care professionals who make these random statements without discussing what they mean for everybody's lives. There may well be a more detailed version of this pronouncement they didn't bother to make, or they can bloody well help you think through how to manage it. You'll be doing a favour to the next poor sod who turns up in that clinic and gets this 'advice'.

She's not alone on a bus. I can understand your concern of course, but you are taking the advice too literally.