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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

8 and never slept,I'm so so tired

24 replies

Haditall · 29/07/2020 07:23

Hes autistic and has never slept a full night since he was born.He sleeps for two hours then is awake through till next evening most days.has to be watched at night as no sense of danger and non verbal. On various medications which all initially helped but now dont.i have tried everything, I mean everything.
It's totally ruined my life,I'm bone exhausted.why is my life so so hard all the time. Surely it's time for the planets to align and sort out some happiness.

Posted here for responses and traffic.

OP posts:
DontBiteTheBoobThatFeedsYou · 29/07/2020 07:29

Does he have the choice or potential to have respite care?

Haditall · 29/07/2020 07:38

Unfortunately not theres no available funding in my area and due to covid they wont revisit another review

OP posts:
ShastaBeast · 29/07/2020 07:40

I have a rubbish sleeper but melatonin works and she’s not that far off being NT so can only imagine how hard it is for you. It’s tough right now with no school on top of everything. Do you have much support or links to support groups? The groups seem to have the best understanding of research and help available plus others with children with more severe issues.

MamaDane · 29/07/2020 07:42

Could you get grandparents to watch him once in a while and get some time off?

Mamabear12 · 29/07/2020 07:43

Have you tried altering his diet? Perhaps something doesn’t agree with him. When my son was a baby he was intolerant to dairy so I could not give him regular formula or eat dairy when breastfeeding. He would wake 5 times a night if I did (only discovered it around 5 months). When I took dairy out he only woke once a night almost immediately! And his day naps went from 30 minute to 1 to 1.5 hours!

Sometimes if a child is intolerant to food it districts night sleep. You could try elimination diet. Or take out most allergenic foods first like dairy, wheat etc. And see if it helps and then slowly introduce back in to see what is the culprit (that is if you notice a difference).

A lot of people don’t want to believe diet can be the cause of health issues, but most of the time it is.

Good luck and I hope you get better sleep.

Haditall · 29/07/2020 07:44

No family near by at all,hes too difficult for friends to manage

OP posts:
Tunnocks34 · 29/07/2020 07:45

No advice but just want to say I hope you’re ok, and that you start to get a bit of respite. I can’t imagine how hard it is for you

Haditall · 29/07/2020 07:46

@Mamabear12 given that he eats only 5 food items and is on a plethora of multivitamins to help him get his needs I dont think I've the option of cutting foods.

OP posts:
LonginesPrime · 29/07/2020 07:48

I hear you, OP. It's hard enough caring for a child with high needs, but doing it with constant sleep deprivation is utter hell!

My first steps would be playing around with routine, room temperature, soft lighting/planetarium, soundscapes (I know he's young, but have you tried different ASMR sounds?) and definitely try a decent weighted blanket.

Does he get plenty of exercise daily? I would aim for him to have more if possible. I assume you've experimented with diet, but I'd keep playing around with that too.

Do you have an autism specialist at your LEA? Or someone within CAMHS? I would also contact your local OT team and ask them for help too.

Do you have a partner or family member who can occupy him for a few hours while you sleep? Sometimes it's a case of relying on different people so as not to overburden any one person (despite the fact you have to do it all the time!) - it's hard to find anyone to commit to regular respite on an informal basis unless you're lucky enough to have a very supportive/understanding network.

Does he have short breaks/direct payments from the council for care support? (not sure what age these start at as mine are teens)

Is there any chance he might have ADHD too? They often occur together and if ADHD is contributing there are likely additional interventions that might help.

You have to keep reminding yourself that as bleak as it feels today, everything will look better once you've had some proper sleep. It really will.

I would also try meditation (for you) - the Simple Habit app is well worth a look. And try to get some exercise yourself as that can really help too.

Has he had a statutory needs assessment from the council? Have you had a statutory carer's assessment?

atotalshambles · 29/07/2020 07:50

Have you contacted your local authority. I have a friend in a similar situation and she is entitled to help ( carer etc..). . Her son is now going to a residential school which gives 24 care. Please, please ask for help and contact your MP if local authority are not helpful .

Doveyouknow · 29/07/2020 07:50

Could you try a safe bed or safe space so you could get some rest knowing he is safe? Sorry, it must be so difficult.

ShayAndBlueSeeker · 29/07/2020 07:53

I have no advice but wanted to say how sorry I am. That would also have driven me to the edge and all the way off into the abyss.

SmileyClare · 29/07/2020 07:57

I see it's been mentioned already but I was going to suggest a safety bed or a safe sleep space. They're not cheap but can transform bedtime for some parents.

EnglishRose1320 · 29/07/2020 07:59

Have you been to the doctor about how you are doing, about how exhausted you are. My friend is in a similar position and won her appeal for funding for over night respite based on evidence of how it was impacting her physical and mental health as well as her sons.
It was basically a case of making it really clear how much more expensive it would be for the council if as a parent she ended up in hospital and un able to care for him (emergency full time specialist foster care) compared to putting help in place before that happened (regular overnight respite in her own home)
It was a long fight though, it always is which is so unfair. The people that need the most help and have the least amount of time and energy to fight have to push the hardest.

I really hope you get some support soon

Popfan · 29/07/2020 08:02

I'd also reiterate the advice about the safe space in his bedroom, your occupational therapist will be able to advise you about this.

Tolleshunt · 29/07/2020 08:04

I’m so sorry, OP, I have no advice I’m afraid, but I’m shocked that you’re just left to get on with this. It’s not in any way sustainable. You can’t maintain your own health or sanity like this. Nobody can function on 2 hours sleep a night every single night. It’s impossible and something needs to change.

Have you seen your own GP and explained you’re on your knees?

Like pp mentioned, I wondered about residential school if there’s no respite. For your sake something needs to be put in place. Have you spoken to Social Services and made it very clear that the situation isn’t sustainable? You may need to really shout and fight about it. Expecting you to survive like this is nuts.

I’m so sorry OP.

DonLewis · 29/07/2020 08:04

There was a thread on here ages ago. I think the parents had twins and had this issue. If I tlremeber correctly, a charity installed a sort of soft play room bed for the children, so they were safe if they were awake. I'll see of I can find it.

It sounds so difficult for you. Fwiw, if my friend had this issue, I'd gladly come to their house for one night and stay up so you could sleep. Gladly. Maybe, as hard as it seems, out the feelers out. One night of broken sleep is not going to hurt me, but a full night's sleep for you might keep you sane. I'd totally help. Flowers

BurtsBeesKnees · 29/07/2020 08:06

Could you contact family services in your local authority? I ended up having to get a solicitor involved as the LA did nothing to help. They will offer very little unless they have to, but they also have a duty of care towards your child and if you're that tired and worn out they should help. Because you're such a wonderful parent there is little incentive for them to help, as they know the child is looked after and cared for. Please do push for restbite care for you and your dc.

Tolleshunt · 29/07/2020 08:07

It was basically a case of making it really clear how much more expensive it would be for the council if as a parent she ended up in hospital and un able to care for him (emergency full time specialist foster care) compared to putting help in place before that happened (regular overnight respite in her own home)

EnglishRose put it a lot better than me. I was thinking along the same lines. It will be much cheaper for them to offer you the support you need than to have to fund a foster placement.

1Morewineplease · 29/07/2020 08:10

Maybe try Social Services. It sounds like you might qualify for a respite worker who can come for a few hours a week.

Pobblebonk · 29/07/2020 08:36

Have social services done a full care assessment under the Children Act? Too many councils avoid this, not least because they're worried that if they do it properly the only lawful conclusion is that they must offer respite. It could be worth your while phoning solicitors who specialise in community care - there may be action they can take to secure proper care using legal aid in your child's name.

HM1984 · 29/07/2020 10:40

Sending you lots of hugs. I think you definitely need to push the council for help on this one and don't take no for an answer. For every no, escalate. You cannot continue like this and you need help, God forbid anything happens - they have failed in their basic duty of care towards you and your family.

Stay strong, I know it is hard and I sympathise millions. Believe it or not, it WILL get easier. Melatonin does help, I think an OT can prescribe it (as GPS won't) however I got mine online for £10 delivered from the USA and has helped me considerably.

HM1984 · 29/07/2020 10:41

*GP's not GPS!

LittleCabbage · 29/07/2020 12:43

Hi OP,

I have no experience of this but it sounds incredibly hard, and I'm sorry you aren't getting the support you so desperately need.

Is there a HomeStart in your area? Here is their page about helping families with children with disabilities:

www.home-start.org.uk/disability-and-illness

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