Here some suggested organisations that offer expert advice on SN.
So fed up and tired and lonely. :-((40 Posts)
DS has autism. He is not severe but he is tiring and full on (very vverbal and hyper and intense) and I'm a single parent. His dad has opted out of parenting and gone instead for the cliche of a macdonald's dad, taking him out for a happy meal now and then rather than having him overnight at all.
DS as usual wouldn't fall asleep tonight. I had to spend an hour simply on reassuring him that I would make his xmas blanket perfectly straight again first thing in the morning before he would get into bed, then do the usual bedtime faff where he stubbornly tries to stay awake.
My mum is very up and down and can't be relied upon, and tonight has text me that she is "exhausted" and can't have DS at all this weekend. Fair enough. I had been pleased she was in a positive frame of mind and I guess I'd got used to it but nope she's going back down hill again and will want practically parenting rather than being a parent I can rely on and who will have DS once in a blue moon.
I am just so so tired and fed up.
Fed up of doing everything on my own. Worrying about money, DS and school, my lack of career, my lack of personal/social life, having to make all the decisions, etc. I need to be in bed but after having a cry and getting all wound up I've come downstairs to have a hot chocolate.
Sorry for the epic post but really needed to get it off my chest and no RL people to talk to.
another lone parent with a kid that won't go to sleep tonight lol!
Sleep deprivation will over time do a number on you if you aren't careful. Sadly I never mastered the fine art of having a nap during the day when mine was at school (was too paranoid I'd fail to wake in time to go collect him). Eventually it impacted my physical health when I got a simple eye infection that took 5 months to shake off simply cos my immune system was so run down. Don't make my mistake if you can help it.
It's amazing how just a single hour alone with a posh coffee or hot chocolate with whipped cream on top can refuel the soul on down days - consider this the prescription of the Boc and go get yourself one tomorrow. if you can find an acquaintance for company (school Mum?) for a natter while you sip that yummy treat ( just to ward off the awful social isolation that comes with a SN kid for a while) it'll help no end too.
No practical advice to offer but didn't want you to feel too alone.
You are not alone. This board is a big support.
Have you spoken to the school at all? How is your child in the class? What support is he getting?
What are your child's main issues? If you post them here the parents are always able to help with ideas.
As for the dad- again, would he sit down and have a chat?
I would second the suggestion of taking rest during the day. It can do wonders.
I just wanted to also say we are here.
As for the money side of things, as a single parent there may be options for you. This will out me but who cares- my council run a "treat for me" cash fund. its basically for parents who are a carer (doesn't matter if you're not carers allowance etc) where you can apply for a cash bonus (upto £300) to literally "take time out". So, for example, some mums with children who have additional needs, i know could never afford a gym membership (plus the guilt of using money for shock horror themselves) have been given the cash bonus to do this for a year.
Do a google search on your authority or give your local carers allowance a call- these things are never publised for fear of misuse.
Also if money is an issue - make sure you're applying for everything you possibly can that fit your circumstances. Sorry to go on about money, but as bochead said- posh coffee re-fuels my soul sometimes. We are lucky enough to have a drive through so even when my trying dc are driving me nuts- i can bundle them in the car and treat myself too.Without too much effort!
Finally, look after yourself. I've always said, its the small things that make a life. Dropping the kids off and then coming home to clear up the bombsite/put tea on in the slow cooker/whizz round doing a quick shop/putting the laundry on - time yourself and say, "i'm doing all this in x amount of time and then go get yourself a shower, do your hair - whatever makes you feel nice and go get a magazine and a posh coffee and find yourself a nice hole to just get yourself an hour.
This obviously might be a whole lot easier on a weekend when dc is out with daddy. But do it then. You're still "you". And the journey your child will take you on will change you as a person for the better. I wouldn't be friends with myself if i had had nt children. Its a hard truth to admit but the truth nonetheless.
DH and and I struggle with two of us and we have more help than you.
Make sure you are getting the right rate of DLA (see cerebra guide) and any extra tax credits for disability element plus carers allowance if your earnings are under £100 per week after tax, NI and childcare.
We also get short break / respite from social services. We applied to the disabled children's team. SS have to do 2 assessments one of the disabled child and one of the carer. As a single parent you should get some hours each week for what you describe - being able to go out, rest up etc. Contact a family have good leaflets explaining the process. SS cannot refuse you an assessment, they can refuse services but must do the assessment. They have to meet the needs of the child but even if they identify carer needs they only have a power not a duty to meet them. But govt has given money to councils for short breaks and involving MP can help if Council has to explain why denied you help.
We get 3 hours a week respite - we use direct payments to employ someone to take DS out. Sadly we can't sleep then as have two other children. We get 4 hours in holidays. I know of families who get up to 10 hours a week and / or overnight respite.
we also get through our local carers charity a specialist sitting service of 3 hours a month so we can have the odd night out.
Even though they don't have to provide services for carers they need to consider what would happen if you got so exhausted or depressed you couldn't care any more. If you go this route you have to be brutally honest about how tired / depressed / lonely etc you are. They will not want you to be unable to care so should respond by giving services. Also say you in effect care for your mother too at times.
Many councils have policies which say only children with autism and SLD or challenging behaviour or a statement can get services. This is rubbish, just local gatekeeping eligibility criteria. There is no such restriction in the law. They have to look at the family as a whole - what outside support you have etc. Besides I think most children with autism have some form of challenging behaviour whether its aggression, being hyper, excessively withdrawn / refusing to go out, OCD type behaviour etc. So don't let them fob you off by saying your child is not severe enough insist on having a carers and disabled child assessment.
If you have a local carers charity they can often help advise you on form filling / applying for services.
Thanks for all these supportive replies, it means a lot to me.
Sadly my night got worse as DS came down with a vomitting bug. Have had to cancel a course tomorrow and reschedule it. Had loads I needed to do today that I can't and DS is even more clingy as if either of us get ill he panics about death. It's a big anxiety of his that one of us will die, no doubt because there is just us two.
I receive DLA and carer's, I have 4 hours a week of direct payments for a PA for DS. This is good in some respects but also means more work in others. No overnight respite due to my mum and ex being around - despite the fact they aren't there for us reliably.
I had to quit my job years ago but am hoping to go back into child minding next year. Would like to get a nice balance (ha ha) - I'd always worked and I miss that part of my identity.
Could so do with a nap today but despite being up most of the night DS is wide awake.
When I say his dad takes him to MacDonalds- they are gone less than an hour most of the time. I asked him if he would sit in with him later as he was meant to be taking him out, just for an hour so I could do get our prescriptions. He won't.
I usually can rest and recharge when he's at school.
Does he have melatonin? It could help with thr sleep issues
Paed who assessed him years ago suggested melatonin but at the time I didn't feel comfortable with the idea. It was during assessment time and I was so overwhelmed with everything.
I might look into it though as he takes hours to get to sleep and then wakes several times a night too. He also wants to be with me to get to sleep, likes to twirl my hair, or have my arm pressing down on him. I find it very suffocating and frustrating.
Don't think there are many MNers local to me. It's not a very mumsnetty place. :-/
You could try kiwi fruit to help him sleep until you can get to the Dr. Blitz 2 with banana or whatever an hour before you want him to sleep and get him to drink it (if this is not an issue!). It will give you a melatonin like effect.
And no I not mad!
He won't eat kiwi he has a very restricted diet due to food issues. Good suggestion for others though in same boat.
- Sleeping (takes hours to drop off and wakes during night)
- Eating (eats limited foods but just about manages something from each food group).
- Anxiety (very anxious all the time, school and I are monitoring thiss at the moment as he's started biting his fingernails down to nothing).
- Intense clinginess
- Sensory issues (hyperacausis, smells and tastes, lights and sounds, etc)
- Bowel issues but managed with meds.
Then there are the usual everyday things such as the bounciness, constant monologues, fussing, melt downs, etc.
I often think I ought to tackle an issue but never know where to start. I heard a speaker at a conference describing eating issues and she described DS down to a tee. He's basically still in the neophobic food stage and has never moved out of it, with sensory stuff going on too. However she said unless the child wanted things to change little could be done. An autistic child wanting change!?! So even if I got a referral to her at other end of country don't know what she could do.
I would definitely consider the melatonin. Him settling would give valuable time to yourself but also could mean he is less tired and therefore is more easy to manage iyswim.
Same with mine. Works for the other kids though.....sadly not such an issue for them though.
Add food and trampoline if you can, plus Epsom salts in bath.
Find a hair twiddling replacement (hairy toy/tassels on cushion)? Weighted bean bag toy (just buy a toy the right shape remove stuffing and replace with beans).
IT IS SUFFOCATING! It takes enormous patience. You are wonderful and it does help to be so kind to him. Well done.
A weighted blanket helps DS - sounds from your description as if yours has summat sensory going on too. It's worth a shot. I've recently discovered that it some areas you can borrow one in the right size from the toy library to test out the concept. if you do this then give it a fortnight to see if it helps.
Twas a mumsnetter from this very forum who made me one at cost when I was at my lowest point ever (I'll be forever grateful!).
St Thomas's in London have an excellent sleep clinic. Worth a referral? Paul Gringrass is the consultant's name to tell your GP. (You didn't say where you lived but if you are close enough then I can testify that these guys are GOOD). Now DS has a properly diagnosed sleep disorder, the foolish comments about bedtime routines and lavender oil don't pop up as often which has helped me retain my sanity on my most irritable days.
Mine goes off OK, but won't stay that way & sleepwalks, so wasn't a suitable melatonin candidate . Melatonin is a natural substance that you can but over the counter in most countries - it's well worth asking about again but do be aware it can't help everyone. However there are other meds around that might.
Lastly - next time you have a review of your direct payments - tell em your Mum is getting too old to help & that your ex is not doing his bit. They know people get less able to help out as they get older, but you do have to remind them politely sometimes that it's actually happening NOW in real time. (I had to do this last year re my sibling & Mum as DS meant I couldn't pick up the slack & my system was running on empty)
Yes I think I will book a GP appointment regarding melatonin. I can't carry on like this!
What is the benefits of epsom salts in the bath? And are they okay for skin with eczema?
Epsom salts in the bath chill ds out and strangely make him more communicative (ie back and forth of conversation lasts longer). He has quite a limited diet (spag Bol is our only proper meal) and language is his biggest challenge, so it might just be him. The theory is you absorb the magnesium through your skin. I don't argue I just do it when we are having difficult patch/I remember. It costs about £2 from boots and you use about half a pot a bath, about twice a week. Athletes used to use it to relax their muscles so it's not very "woo".
We live in Hull, East Yorkshire. I'd travel to see someone decent I think.
Starting with sleep probably wisest idea yes.
Haven't tried anything weighted but may work. Will see if anything available locally to loan.
Haven't heard of the epsom salts thing before but definitely worth a try!
Please do try the melatonin...
My ds has always struggled with getting off to sleep along with waking often through the night.
The sleep deprivation nearly did me in and I have a DH who is home at the week-ends.
I gave in a we started melatonin last month and really the evenings are so much better for us. He goes down much easier and is asleep much quicker therefore giving me some me time in the evening to recharge a little.
He still wakes often through the night, but as I've recharged during the evening I can cope with this mostly.
Magnesium supplements make a difference as they help calm the child. I started with epsom salts in the bath (buy in bulk cos you need a good full cup measure to get an effect) and then switched to supplements to save cash. I found I had to take a multi-pronged approach to the sleep issues in order for it to have an effect but have doing the mg supplements a few years now, so only really notice when we run out. In the initial stages I do remember it took approx 3 months to be able to wean off the baths onto the pills. I think you need to build up a certain amount in the child's system? DS takes it as part of a multi-vit as the zinc is also supposed to help brain development
Re the food issues - at Easter there was an ABA conference with a study on how to overcome this. I was very impressed at the results and know there's a thread where people went home and tried it. I'll do a search for you when I get the chance and link it to this thread as it details the methodology they used.
Hello yourhand another lone parent with a dd with ASD (who just about sleeps ok when her anxiety is ok). My ex has the kids when I am on call and did so last night and I crawled into bed at 1930h as a result! You've had some excellent practical advice above so just here with one of these <handhold> and <brew> hope your ds get better very quickly and that you can rest a bit.
DS seems over his stomach bug and I have booked a GP appointment for next week to discuss melatonin/a referral back to paed. Will definitely try to tackle the sleep first.
Handywoman - it's tough isn't it. Me and DS both got into my bed last night at the same time and we BOTH FELL ASLEEP!! He must have been really ill! Feel so much better for a solid night of sleep. It's still just the two of us but last night highlighted how tired we both must have been.
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