To feel sad that we won't be able to do this

[Rainbowsandbutterflies1990]

I'm currently sitting in hotel reception with my 6 year old autistic non verbal daughter who has significant learning disabilities. She is awake , we have booked a 2 night stay to see friends for weekend and last night she was awake from 4.30 am (while at home)then didn't go sleep in hotel till 1.30am so was nearly awake 24 hours hours. And because my husband was driving the 4 hours I had to let him sleep and me be with her. So I was awake too with her. And now sue went sleep at around 9 pm last night(which is actually quite good) but been awake since 1.45am and looks like she will be staying awake now. And as husband is driving home the 4 hours home today I'm with her in reception. Just really sad we have another child. So I've left them to sleep. Just feel sad that this isn't something we can do again and a lot of things are becoming too difficult. And I'm obviously feeling exhausted 😩

Unfortunately she isn't safe on her own .

Hotels weren’t great for us either. If we had to use one, I recommend bringing their (unwashed) bedding so that sleep smells familiar. My ds needs a fan to get off sleep (not sure if it’s the coolness, or the white noise, or a combination). It makes for a lot of extra luggage though.

I have 2 DC who sound like your DD, we have tried everything around sleep.

You'll probably find hour world does get smaller and smaller but we've tried to adjust - fewer days out and more playdates or activities at home (or in SEN centres). These days we take it in turns to go to a big event like a wedding and don't take DC. We also socialise with our friends at our home after kids have (finally) gone to bed, we normally explicitly say "chucking out time is midnight".

Can you drive next time so the night waking doesn't fall just on you?

My DS has been using melatonin for a few years. But recently he complained that although it helps it doesn't atop the night waking and then lying awake for hours (Im extremely lucky - he's 12 and now doesn't wake me when that happens unlike before). Dr prescribed anti allergy meds instead and he sleeps longer with them.

Good luck I know how draining (understatement! ) non sleeping is.

Would an Airbnb be better than a hotel in future? Then at least you’d have a separate lounge to go to rather than having to resort to reception.

I feel your pain , my son is 12 and there are soo many things I want to do but can't and I haven't even bothered with a holiday because it's too much effort ! 😫

My child is autistic more social related. Sleep has always been an issue. We stayed at a hotel and she was awake at 3am excited about breakfast. Couldn’t understand why we couldn’t go for breakfast. I was exhausted for our day out the next day. So just wanted to say I hear you. I also worried for her younger sibling but now I make sure they have separate days out/quality time. I still avoid hotels, parties etc though. I’ve learnt what works for her and I pick and choose. I hope it gets easier and you get some sleep.

Is she a danger to herself when up? Otherwise I don't understand why you can't sleep even if she doesn't?

Presumably when she's pottering about in a hotel room, she is noisy and will wake her parents and sibling which is why OP is awake currently...

Sorry things are so tough OP. Hope you manage to have a nice day despite the tiredness.

Do you have any respite care at home? It could be worth asking for it. In any event, if the local authority haven't done a care assessment under the Children Act 1979 they should have, so push for it.

It is very difficult, my dad has similar issues however she does sleep thankfully. I have over the years felt like you. I have to say she’s 8 now and it gets better sometimes, worse other times. I’ve been pleasantly surprised when we’ve pushed the boundaries to try things.

However when it doesn’t work it feels awful and makes you feel like you are trapped. Honestly when I’ve felt that way I don’t think anything anyone could say would make it better. Just always keep an open mind even when it feels like it will always be restricted.

Sorry dd not dad 🙃

I'm sorry it's so hard OP. You must be blooming exhausted.

Best wishes OP. A tip for getting some sleep as a car passenger is to bring a pillow.

That must be incredibly hard. Lack of sleep is an absolute killer, it makes everything feel so much harder.

I take our older one (NT) away by myself these days. It works for us - my husband hates hotels anyway. Holiday close to home can also work well. It may sound silly to some but it's still a change of scene.

Maybe it's time to look at some specialist disability friendly accommodation where they can provide a safespace for sleeping. Not so good for meeting up with friends though.

Sorry if this is something you've tried OP, but would going away for 4 or 5 days work? DD would have slightly more time to adjust and at the very least you guys wouldn't be driving again so soon and could share the nights and fit in some naps?
I really feel for you, sleep deprivation is against the Geneva convention for a reason...

@Rainbowsandbutterflies1990 withIm so sorry. It's hard having a child with a condition or disability and I feel for you.

Not sleeping isn't good for you or your DD, you're both exhausted. Ear phones helped my DD reduce over stimulation. Have a look at these
https://www.loopearplugs.com/pages/earplugs-for-autism?
I also bought weighted blankets for my kids. Good luck.

Please remember she is non verbal due to over stimulation not because she cannot hear or understand.

Sending a hug. You do need to do as many normal things as you can including going away, so I hope you find a way of still doing that in future xxx

This sounds really tough OP. I am not sure there is any solution you've not already considered, but maybe the doctors can help with some medication for sleep? Sleep deprivation i toture.

For another time, I think I would probably would have stayed in the car and napped with her. That way she could have stayed asleep and would be safely strapped in, and you could had some shut eye.

Just sympathy OP. What an awful hand you have been dealt in the card game of parenting. So sad for you.

Great advice here from Festivfrenzy. Children with autism can be so challenging & days you can enjoy as a family extra rewarding. The circus experience sounds amazing. I cant offer any further advice other than I've heard a weighted blanket can be a good idea for some SEN children. 🤗

I know it doesn't help for this break (sorry use of that word feels ironic) but if you ever try again have you considered static caravan? Or air b and b type places.

You don't have other people in the same way to worry about and with a caravan you always have a big sofa that turns into a bed in the living room so at least you could lie down while she watches something. Easier places to take turns with your younger daughter if she wants to do things as there are things on site.

Hope you manage to get an hour or two. You sound an amazing mum.

Does your DD sleep in a regular bed or do you have a suitable safe sleeping bed you can take with you? You mentioned she wouldn't be safe if alone. Also, has she been seen by the sleep clinic for an overnight sleep study? Have you ruled out restless legs, acid reflux etc? I'm sure you have probably explored all of these things but just wanted to mention in case it helped.

My child has very similar needs and unfortunately the same kind of sleep pattern. We have a safe bed (PM me if you would like more info) that fits on any single mattress and can be taken with you on holiday. It has been a life saver for us. You zip it up when the child is in bed and they cannot get out or flip it, no matter how much they try. It is completely safe and has a clear panel at one end so we can use a baby monitor camera to watch them at night if needed. It is very spacious but cosy at the same time and is a home away from home when you have to stay somewhere overnight (hotel/hospital/holiday home etc)

Not that we go away much but it means we can book two adjoining hotel rooms and have the door open in between. One adult in each room but if you need to move to the other room to sleep you can do so safely. White noise played all night to block any noise that would wake the rest of the family and that way you can put the TV/music on in the other room if you child needs that during the night. Or you can stay in the room but at least doze a bit more as you know they are safe.

I know it won't help for this trip but it might be something to look into if you haven't ruled it out already. OT should come to your home and assess and then they can fund it, but there are also charities which can help too.

Hi, I’m so sorry reading this. I am a fellow mum of an autistic child and sending so much love and respect.
Our struggles are different (every tiny thing is perceived as change and so leaving the house involves 2-3 massive meltdowns) but it is impacting day to day so much. My husband and I both work and we have another (incredibly understanding and patient child). But yeah, sometimes it all sucks and I wonder wish I could be like an ordinary family.

Jesus, this sounds absolutely bloody horrendous. 😔

@Dibbydoos

how on earth would you know why she is non verbal? 🤦‍♀️

op ignore this idiot! Unless I’m mistaken she hasn’t met your daughter and doesn’t understand the term non verbal.

autistic children often don’t speak until later because of their understanding. It can take a little longer to get there but usually happens. Not talking due to over stimulation is completely different.