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Original poster

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

56 replies

Rainbowsandbutterflies1990 · 20/08/2023 04:14

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 😩

OP posts:
Original poster
Rainbowsandbutterflies1990 · 20/08/2023 04:16

We also have friends staying in our hotel and had day planned with them, and I'm going to be knackered for that and not enjoy at all. Just feeling very sad and upset that this is just added to long list of things we are unable to do as a family as I have disabled child and worried my younger daughter will miss out. 😢

OP posts:
Original poster
Rainbowsandbutterflies1990 · 20/08/2023 04:17

*when I say last night awake from 4.30am I mean early Friday morning.

OP posts:
calmcoco · 20/08/2023 04:31

It sounds really hard Flowers

The parenting challenges if your child has SEN are bigger and so I think it's natural to feel sad about how that impacts.

I am sure your younger DD will feel your love and support. If ever I've not been able to do something for my kids for practical reasons I've made sure to demonstrate how much I care about them. Many children have no emotional support or love - and that is the most important thing, and something you definitely can still provide even when the needs of your older child make it difficult to do a specific activity.

I'm sorry you're so knackered. Is there any way you can get a nap when everyone else is up?

OoohWhatchaSay · 20/08/2023 04:33

I really feel for you OP x
I'm sorry you're having such a tough time and getting so little sleep. I can completely empathise with you, my son is 4 autistic and non verbal and I completely understand about missing out and not being able to do things. I don't think it ever gets easier to accept how different our lives will be to what we'd hoped. I've had to massively lower my expectations on days out, seeing friends, living life etc but I still get very down about it.
I'm currently sat up with my son, who has been awake for the last hour, dreading getting through another day on so little sleep.
You sound like a great mum, it must be tough trying to balance the needs of your daughter as well as looking after your youngest too. Sending lots of strength to you x

Original poster
Rainbowsandbutterflies1990 · 20/08/2023 04:37

Thank u for the replies . I'm thinking of going back at 7 so then hopefully can have few hours dont know what time friends are checking out. I remember posting on here when we went to wedding last year as daughter was up again around 2am I ended up going into conference room as was big fancy hotel and they got us big beanbags and disney dvds on one of big screens. I stayed in there all night too. This is just premier inn. We could possibly come away again just book 2 rooms but still the being awake and me being tired will suck. I don't know! 😔

OP posts:
popcornfrenzy · 20/08/2023 04:37

Would you be able to give her something to help her sleep? Something natural and herbal?

octoberfarm · 20/08/2023 04:39

@calmcoco put it much more beautifully than I could but just wanted to echo that that sounds really, really tough, and that I'm so sorry you're having a hard time. It's absolutely okay to feel sad - it sounds like you're handling such a lot, all whilst managing to be thoughtful of everyone else's feelings. Hope you manage to find a little quiet time for yourself today/tomorrow (could you ask one of your friends to help with DD so you can take a few minutes, perhaps?) and maybe when you're home you could have a little treat out (a hot chocolate at a local cafe, a walk just the two of you) with your other child get some quality time together outside of being there for your DD. I have a medically complex child at home and when I worry his brother might be struggling with it all, those little him and me times can really help. Sending you a huge hug Flowers

Original poster
Rainbowsandbutterflies1990 · 20/08/2023 04:41

popcornfrenzy · 20/08/2023 04:37

Would you be able to give her something to help her sleep? Something natural and herbal?

Super annoyingly actually stronger word needed! We have melatonin at home which we have forgot to bring. It doesn't keep her asleep and doesn't always get her back to sleep if she wakes in night but we have only had it few months and we forgot to bring it no idea if that would help.

OP posts:
panko · 20/08/2023 04:41

Sounds tough OP, no advice but just wanted to let you know I see you and your struggle.

popcornfrenzy · 20/08/2023 04:45

@Rainbowsandbutterflies1990 when my nephew was smaller (he's autistic) my DSis was in the depths of despair with his sleep - she gave him buttercup medicine which helped him sleep (I don't think you can get it now)

What a sod you've forgotten some medicine that might've helped. My thoughts are with you as sleep deprivation is horrible - is there any chance you can nap in the car later?

Original poster
Rainbowsandbutterflies1990 · 20/08/2023 04:49

popcornfrenzy · 20/08/2023 04:45

@Rainbowsandbutterflies1990 when my nephew was smaller (he's autistic) my DSis was in the depths of despair with his sleep - she gave him buttercup medicine which helped him sleep (I don't think you can get it now)

What a sod you've forgotten some medicine that might've helped. My thoughts are with you as sleep deprivation is horrible - is there any chance you can nap in the car later?

I will try and nap but I'm rubbish at sleeping in car I couldn't sleep on way here when I been up since 4.30 , at around 9am . Think as it might be later as we are not going straight away I might ,

OP posts:
Rainallnight · 20/08/2023 04:50

I’m so sorry, OP. That sounds really hard. No advice but sending 🌷

Roselilly36 · 20/08/2023 04:51

Handhold. I remember your post OP, sorry that the sleeplessness is still ongoing, that must be really tough. I am often awake during the night, combination of my disability and the menopause, it is exhausting. I hope things improve soon, perhaps the darker nights coming may help, I do hope so. Flowers

Original poster
Rainbowsandbutterflies1990 · 20/08/2023 04:51

Thank u for replies it's helping stay awake as I'm struggling a bit!

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CliffsofMohair · 20/08/2023 04:54

God that’s rough 💐. Sending solidarity from afar. Awake with a poorly toddler here an DH has buggered off to his parents for some sleep.

GreeboIsMySpiritAnimal · 20/08/2023 05:08

Holidays with autistic kids are so hard. My DD is autistic without learning difficulties and she really struggles - we keep persisting, in fact we're away atm, but we have to compromise so much to make it bearable (not enjoyable, just bearable) for her that I wonder whether it's worth it.

I have no advice, but tons of sympathy. Flowers for you.

Namechangedforthis2244 · 20/08/2023 05:22

No advice but a handhold for you- that sounds really tough 💚

PriOn1 · 20/08/2023 05:26

Rainbowsandbutterflies1990 · 20/08/2023 04:49

I will try and nap but I'm rubbish at sleeping in car I couldn't sleep on way here when I been up since 4.30 , at around 9am . Think as it might be later as we are not going straight away I might ,

Show quote history

As someone who is rubbish at napping, but who has had lots of sleepless nights working on call, I’m always wide awake at 9am, but can sometimes drop off after lunch when properly exhausted. Might it be possible to time the drive for that time?

user1492757084 · 20/08/2023 05:27

How horribly exhausting.
In future can you not plan to snooze in your own room - you and daughter's room? Will your daughter stay calmly and quietly awake while you snooze nearby with the room dark?
Is there a medication your daughter can use a couple of times per week so that you can sleep?

This is so hard on you all. Husband has to do all driving and miss you being perky. You missing sleep and feeling low and unable to enjoy life. Daughter suffering sleep deprivation and cementing night time wakefulness and your other child knowing that their sibling is priority one by necessity.

See a specialist; new options might have been invented to help kids sleep or to help them stay quiet and content while awake.

Original poster
Rainbowsandbutterflies1990 · 20/08/2023 05:30

Little update she started till have meltdown as tired so I took her to car and drilove round and she feel asleep so I picked her up and carried her to lift and she has woken up so we r back in reception but at least not having meltdown. Small win.

OP posts:
Original poster
Rainbowsandbutterflies1990 · 20/08/2023 05:35

user1492757084 · 20/08/2023 05:27

How horribly exhausting.
In future can you not plan to snooze in your own room - you and daughter's room? Will your daughter stay calmly and quietly awake while you snooze nearby with the room dark?
Is there a medication your daughter can use a couple of times per week so that you can sleep?

This is so hard on you all. Husband has to do all driving and miss you being perky. You missing sleep and feeling low and unable to enjoy life. Daughter suffering sleep deprivation and cementing night time wakefulness and your other child knowing that their sibling is priority one by necessity.

See a specialist; new options might have been invented to help kids sleep or to help them stay quiet and content while awake.

Yes we could come away and buy 2 double rooms and 1 of us stay with her. But still issue of one of us being tired

She understands very little so wouldn't understand if we asked her to he quiet that's why we had to go in reception.

I think solution is to not come to hotel

OP posts:
Festivfrenzy · 20/08/2023 05:42

So sorry OP it sounds really difficult. Only advice I can offer is whilst you're feeling rubbish now just to think life with kids seems to be a series of little stages and step changes- just as you get a handle on how they work they develop and grow and some new challenges emerge. Also you develop as a family and have to keep trying new things which will sometimes work really well and be a pleasant surprise and sometimes will catch you out and you'll end up in a hotel lobby feeling poo.
So don't be too hard on yourself. Next time you'll remember the melatonin and maybe book an extra room- plus I swear by eye masks and white noise played on a speaker or through earphones/could try one of those pillows that have speakers inside them, for you and DD. And I like pillow spray as a relaxing spa like smell which makes bed feel luxurious.
Maybe next time though your DD will end up tired enough to sleep through and you'll waste the second room cost- who knows! You're clearly doing great though balancing everyone's needs and worrying you're giving each DC enough attention so don't worry about being caught out these times when things just catch you out- you'll never foresee every eventuality so just be proud that you're getting out and about with your family, seeing your friends and making the best of the experiences life can offer. Your friends will be pleased they've seen you at all so if you miss them today don't stress too much.
Hope you manage to nap at some point and just try to feel proud of yourselves as a family for your weekend away- it's always a stress and a hassle to sort the logistics but it sounds like you've mostly cracked it apart from the sleep set up. And in case your DH is anything like mine you might need to spin it extra positively for his benefit too so he feels up for doing it next time.

Namechangedforthis2244 · 20/08/2023 05:55

For next time if you had a second room is there any safe way that you could sleep whilst dd was awake if it was just the two of you in a hotel room?
I was wondering dangers moved, door locked and a familiar movie on tablet with headphones in bed next to you? It’s hard to know if that would be viable without knowing dds needs but if it would it might be worth planning on the assumption that she won’t sleep and setting up for that.

Fbshe · 20/08/2023 06:05

Piriton makes me really drowsy and I take it when I have something important coming up that I am anxious about because it guarantees a solid 8 hour sleep. Could you try that next time? It’s the over the counter one.

Original poster
Rainbowsandbutterflies1990 · 20/08/2023 06:10

Festivfrenzy · 20/08/2023 05:42

So sorry OP it sounds really difficult. Only advice I can offer is whilst you're feeling rubbish now just to think life with kids seems to be a series of little stages and step changes- just as you get a handle on how they work they develop and grow and some new challenges emerge. Also you develop as a family and have to keep trying new things which will sometimes work really well and be a pleasant surprise and sometimes will catch you out and you'll end up in a hotel lobby feeling poo.
So don't be too hard on yourself. Next time you'll remember the melatonin and maybe book an extra room- plus I swear by eye masks and white noise played on a speaker or through earphones/could try one of those pillows that have speakers inside them, for you and DD. And I like pillow spray as a relaxing spa like smell which makes bed feel luxurious.
Maybe next time though your DD will end up tired enough to sleep through and you'll waste the second room cost- who knows! You're clearly doing great though balancing everyone's needs and worrying you're giving each DC enough attention so don't worry about being caught out these times when things just catch you out- you'll never foresee every eventuality so just be proud that you're getting out and about with your family, seeing your friends and making the best of the experiences life can offer. Your friends will be pleased they've seen you at all so if you miss them today don't stress too much.
Hope you manage to nap at some point and just try to feel proud of yourselves as a family for your weekend away- it's always a stress and a hassle to sort the logistics but it sounds like you've mostly cracked it apart from the sleep set up. And in case your DH is anything like mine you might need to spin it extra positively for his benefit too so he feels up for doing it next time.

Thank u for this, we went to circus for first time as family on Friday and I actually cried after it was so amazing I loved it but also it was one family activity that my daughter could go to and she seemed like she actually genuinely enjoyed it. She isn't able to tell us what she likes so to see her so engaged wad amazing also it didn't matter if she was stimming or shouting as it was quite loud. So I guess there is that to come out of weekend.

OP posts: