Not coping with life at all!

[NikkiSmith]

Hi,

I don't find the time to post on here very often, but frequently read.

 

I am hoping that by typing all this out it will make things seem better then they currently feel!

 

I have 3 gorgeous boys whom I love to pieces, but I cannot deal with!

ds1, 6yrs, is NT, but school say is very bright and starting to have behavioural issues (due to his hectic home life and lack of sleep!)

ds2, 4yrs, ASD, playing up at his CLD school and home and doesn't really sleep! (a couple of hours each night is enough to keep him functioning, but he is not safe in the middle of the night alone!)

ds3, 2ys, definitely on the autistic spectrum, also doesn't sleep that well and is permanently clung to me (known as the kling-on!)

 

My dp, 37yrs, AS, has been working out in Baghdad since the middle of January and isn't coming home for another month.

 

I want to sleep and feel vaguely human again!

ds2 goes for his overnight respite tomorrow night, but it's almost pointless as ds3 isn't sleeping! Paed has given up trying medication to help with sleep as nothing works and she thinks it's just their genetic sleeping pattern as Dad sleeps badly too.

 

ds1 hates his life in this house and wants to live with my parents (5 mins up the road) as he has had enough of ds2 & 3 (his words!)

 

ds2 is becoming a nightmare to deal with; I struggle within the home, let alone going anywhere as a family as he is so unpredictable - even with him and ds3 in the double major buggy. ds2 fights, kicks out, takes his shoes off and throws them, sticks his socks are far down his throat at he can (he also does this on the bus to school, but it's half-term so that's next weeks challenge!) ds3 screams the most incredible high pitch scream if he doesn't get want he wants or things are not the way he likes them. It really is a joke trying to go anywhere - even the park!

 

I feel like I shouldn't be complaining, I know I get a hell of a lot more input than others I have read about, but I am just not coping.

 

The health visitor and social worker are fab, but the only thing they can do is offer to come and talk to me - but talking things through and going over it repeatedly don't make life any more bearable.

 

My GP just keeps prescribing me prozac even though he knows I won't take it - he agrees that I am not depressed, but thinks I am very stressed and this is the only thing he can offer me!

 

So can someone please pinch me and tell me it's all a bad dream and if not, tell me that I just need to get on with it and stop flippin moaning!

 

 

Feeling better for getting it all out of my head, no replies needed!

 

Thanks,

Nikki.

[oxgirl]

Oh, Nikki, what can I say hun, so sorry you're having it so tough. <'> <'>

Do your parents know what a struggle life can be for you? Are they able to help out more often on a practical basis, maybe taking one or two of your boys once or twice a week and having them stay overnight or taking them at weekends?? What about other family members, could anyone help to share your load at the moment, especially with your partner away?

So sorry, nothing else useful to say, but thinking of you and sending some <'> <'>

Look after yourself.

 

~ Mel ~

[jlp]

Hi Nikki

 

I remember you from HB

 

I wish I could think of some practical things that might help - I wonder if you really try and make the SS and HV see that you are literally at the end of your tether if there's anything more they can do.

 

I really know the feeling that you can talk and talk and people can be so sympathetic but there comes a time when you realise talking and sympathy isn't what you actually need.

 

What about if you could possibly see about a nursery place for ds#3? HVs can refer you (mine did when ds#2 was 2 but in our case it took a while and I ended up saying it doesn't matter I'll pay myself!) - you really need some time to catch up your sleep. I know when I've had no sleep for a long period everything seems much harder and darker.

 

It sounds like some time alone with ds#1 would benefit the whole family too - I wonder if there's any chance ds#2 and #3 could be away at the same time (respite? Or ds#3 at your parents while ds#2 has respite?)

 

If I had a wand to wave I'd send you Mary Poppins (an asd friendly one) who would pack you off to bed and see to the house and children.

 

xxx

[chriss]

I m not surprised you feel stressed. The lack of sleep alone would get anyone down! Is there a Surestart in your area? My friend got a Surestart volunteer who was a retired nurse and they visited once a week for a couple of hours. It isn't much but if you could just have a break once in a while it will make all the difference - as I know from experience.

 

I hope things get easier for you soon. <'>

[dooday24]

<'> <'> sorry to hear u r feeling very low sending u loads of these <'> <'> <'> <'> <'>

[Clare63]

<'> <'> <'> Ah poor you, you sound knackered.... glad you feel better though for writing your "post" ..... I think we all know there are no instant solutions and anyway what works today may not tomorrow. But keep writing, getting off your chest is good therapy.

Lots of <'> <'> <'> for you

Clare x

[JsMum]

Just want to say welcome and to say hi, your coping with a lot with very little practicle support, I know that you feel like you are been listened to by your health visitor and the respite is very good but like you say you need to also look at the youngest one as well now as this will just repeat week in week out and the respite that gives your son a break he wont understand why you are not refreshed when he returns.

 

the eldest behaviour could be sleep deprivation if he is kept awake by his younger brothers, but I would just incase there is other reasons ask for the education Psychologist to observe him and get his opinions.

 

Have your youngest two had a proper sleep assessment at a sleep clinic, if it is that the gp has tried medication and it didnt help then this does sound like there is something quite wrong, most sleeping medications should work, there is some very good sleep websites so do check these out and I am sure your GP and Health Visitor could refer you to one of the specialist sleeping centres and get to the bottom of why your two youngest are not sleeping.

 

I would look into respite defo for the youngest even if its a nursery a few hours a day.

 

Your post made me remember how it was like when J was younger, all most a match, but I just had one, the fact you have three with two on the spectrum you are doing amazing job and so much stronger than you feel at the moment, I really dont do well when I have had little sleep, I think you are right that sleep can really help the way we cope and function so I would really look into this.

 

I dont like the lack of care the gp is giving you either, prozac is suppose to be short term and only until something like councilling or similair is set up, I would be very upset if all the GP wanted to do is give me medication!

 

Anyway nice to meet you and see you soon.

 

JsMum

[elun1]

<'> Hi Nikki

You have such a lot to cope with - 3 little ones all with different needs and 2 on the spectrum - you should be getting way more support than this. A nursery place for your youngest as others have suggested sounds a good idea - that way you could sleep in the day and try and grab some 'me' time. You need and deserve it. The lack of sleep is so awful - you actually are doing brilliantly although maybe you don't see it that way. My youngest ds also needs v little sleep - sometimes I literally don't feel 'real' following a sleepless night! I'm lucky tho as mine both in school and I work 3 days a week which is a kind of respite all of its own. Wish I could help more - sending you lots of <'> <'> <'>

Elun xxx

[NikkiSmith]

Thank you all so much for the replies, I really didn't expect anyone to reply to my mad ramblings! But I am so glad nobody thinks I am crazy.

 

As far as ds3 goes, until we get the right piece of paper from the NHS paed nobody seems prepared to listen. He goes to a childminder for a couple of hours on a couple of mornings, just so I have time to clean up ds2 room (as he still spreads the contents of his nappies everywhere!) without him clung to me.

I have spoken to the fab pre-school that ds2 went to and they are happy to take on ds3 but are just trying to organise 1-2-1 help for when he starts in May - so I am looking forward to that!

 

My parents really do try to help as much as possible but my mum has MS and is in a wheelchair and my dad works full time and has to help my mum, but they do have ds1 at the weekends to get him out of the chaos! They've tried having ds2 or ds3 as well but because their bungalow is open-plan it's an absolute nightmare trying to contain them and the damage they can cause.

 

We've been re-referred back to Homestart - we had a volunteer early last year, poor woman came once and then was off sick for about 6 months! So we are now back on the waiting list for another one..... but I won't hold my breath.

 

I know ds1 playing up at achool is due to the mayhem of his homelife and he is definitely not AS because he's not my dp's!! Where as the other two stood no chance!

 

With ds2 and the medications; Melatonin worked wonders in the beginning but it didn't last long, then he had Vallergan Forte which made him hyper and the chloral paediatric elixir made him totally uncontrolable and literally bouncing of the walls! Currently we're trying liquid parafin to help with the constipation as the paed thinks if they unblock him he may feel more comfortable and therefore sleep better........

 

 

Anyway, I should get back to the chaos - we've all been up since 4am and I'm totally worn out all ready!

 

Thank you all again - it really does mean a lot that you read it and replied and you understand what it's like! That's the hard part of everyone I talk to telling me that they understand and I know they don't have a clue!

 

Nikki.

 

jlp - I rarely get the time to post on HB or anywhere else for that matter!

[Kathryn]

I'm amazed that you actually manage to get anything done at all! I only have two children, miles apart in age, so I can't begin to imagine what it's like.

 

Sleep is a priority - I hope somehow you manage to get the help to solve this one.

 

K x <'>

[Flora]

<'> <'> Your post sounds like me several years ago! Like you I have 3 children, 2 of which are on the spectrum and the eldest being NT... My children are now 14,13 and 10..... I can tell you very positively that things get easier when they are older. I know you won't believe that now, and it's no help to you at the present, but I want to give you the glimmer of hope that you need to help you through each day. I remember a time when my children were aged 5,4 and 1.... the middle child Bill wouldn't keep his clothes on and slept no more than 3 or 4 hours a night.... the youngest one was in a world of his own and while was a lovely toddler his only form of communication was to scream and trying to dress him was like going 5 rounds with a wrestler.... I could go on but won't.... I just wanted to let you know that you're not going mad.... you're obviously a great mum and on your knees with stress and tiredness. One day in the future this intensity will be a distant memory... You'll still have problems to deal with but they will be of a different nature... but the relentless intensity of your present situation will ease as your children mature.

 

Wish there was more I could offer you...

 

Best wishes

Flora X

[Valiant_Skylark]

<'> <'> Your post, or most of it, could have been written by me too, a few years ago. You are definately not overstating how difficult it is!!! And I only have 2 boys and an NT partner...

 

The good news is, that like Flora says, things do change (in fact, the only certain thing is change), but for us it took a long time too.

 

My boys only really started to sleep more easily when their diet was sorted out (Gluten-free and Casein-free on the advice of the Autism Research Unit at Sunderland university and Mor EPA fish oils, which were "calming" for them generally). I've followed the diet (CF bit) and Mor EPA supplement myself and it does make me less anxious. When I have casein, my mind can race and I dream so vividly that I dread what nightmares I will have - so I'm not keen to drop off IYKWIM. Dropping these foods has made my boys lose all the bowel problems, so I'm not on Pooh-Patrol, as you describe. My eldest also stopped wetting on this diet, so it was great to have much less cleaning and washing.

 

I never found that normal calming bedtime routine worked. Sorry. Did try for 18 months ie shutting down the whole household at kids bedtime and lying like corpses in the pitch dark, but mine were often unwell with "hidden" ear infections, which made them scream or fret or be grumpy all night, so we ended up at the out of hours GP 2 or 3 times a week to get antibiotics (or get them changed as they weren't working). Apparently lying down changes the fluid in the ears and so your child can experience pain at night, which isn't necessarily apparent in the day.

 

Again, all these problems, including non-specific aches and pains, went away with the GF/CF diet, which made the boys easier to settle. When kids are little, they can't tell you what is wrong, esp if they have always been like that. I've seen other parents with little kids that I swear have the same "hidden" infections (temperature may well even be "normal", but a quick look in the ear by the doc will reveal a red and bulging eardrum), but the parents often don't even seem to consider physical causes as part of the problem. One child I know is now at a special school for SALT, but her mum "didn't want to bother the doctors" when her baby was constantly fretting and hyped....I still wonder. Another child had a parent who didn't want the "stigma" of a special diet (her words), but her son ended up at Juniors with behavioural problems, so she had him tested and he has the diet problems, allergies and will now be significantly deaf for the rest of his life. So please, please, please consider ruling out this sort of thing asap?

 

Eldest son then became very routine-bound, insisting on a half-hour chat about all his school anxieties, and still stayed awake for hours, wandering the house and having falls. We had success with giving him story-tapes, which we got from the library, which he chose. In this way he was weaned off me and began to learn to at least entertain himself until he went to sleep.

 

Youngest son was the ultimate Cling-on too. I think this was due to the constant low-level pain from his joints and ears and also due, in part, to his cerebellar and visual problems - he never felt "safe" unless he was supported by me. Basically, his balance was ###### and his vision so unstable that he didn't even know that grass was made up of "bits" (blades) until he got his blue glasses. His clinginess decreased only with vision sorting, OT for his dyspraxic traits, fish oils (Mor EPA) for the vision and anxiety etc. He was also plagued with aches and pains, so a visit to orthotics for feet helped, but the change to GF/CF made a huge change to how "hyped" he was.

 

Eldest son has never managed to have an early bedtime; his brain just doesn't seem to let him. The saving grace has been that as he has got older, he has needed less sleep at the other end (ie been less tired at waking-up-for-school time), so he's less grumpy then. And of course he is better at monitoring what sets him up to find sleep difficult. When your children are a little older, you might be able to use something like the "Alert" programme (see your OT service) to help teach the boys to first recognise and then manipulate their own states of alertness (ie how fast their "engine" is running). This programme helped my son to work out the causes and effects of what he was doing at bedtimes. I think Alert could be used a lot more in ASD, as it has a lot of potential. The child will need help to recognise WHEN to use the program, and to go through the steps of using it, but the long-term benefit is worth it. (Alert is on my son's statement for use in school too).

 

Finally, all the usual stuff like avoiding giving the kids sweets and sugar and additives etc is common sense and can make a huge difference. Dump it, and the gluten and casein if necc, and you'd be amazed how previously fussy eaters can improve. My 9 year old will even eat brussel sprouts without turning a hair these days. If we trangress, even hubbie can't sleep until 4 in the morning, so it is obvious how much these substances were affecting our sleep.

 

Another very pro-active friend, with a 3 yr old ASD and 2 other boys, has already been to a sleep clinic. They added that the boys were watching far too much TV in the evening and computers were on all the time as the Dad works from home in IT. They were told to have all TVs and computers (and the like) off totally a few hours before bed-time. Melatonin was working for them last time I visited.

 

If it is any consolation, I never found sending the boys to grandparents at a very early age that brill in terms of respite anyway: It took ages to pack all their stuff, the boys were so confused by the different "rules" and environment that they tantrummed for weeks afterwards and it took a while to re-establish control, and we parents were so used to being constantly woken up that we couldn't fall asleep as our sleep cycles were in tatters. Ho Hum!

 

Practical suggestion for now: Have you got the DLA sorted out and carer's allowance for yourself? Get support to get DLA and get cover for the night care that you do. Give the DLA evidence that these problems are not sortable and not "short-term". Tip: I didn't get night-time DLA as I naively wrote that my son didn't go to bed until 2am and then only slept till 6 and needed support for the hours he was awake. Wrong. I should have said (the Careres Association told me years later when I had finally broken down) "I put my son to bed at 7pm, but he awakens x times for x minutes and needs re-setting [add everything you have to do])" Basically, you have to make it clear that the child IS put to bed (sleep) and then gets back up again. The dla forms were not designed with ASD kids' problems in mind, so that's where you need to be very careful to use words that will get you the right dla. Ring the Carer's Association to get up-to-date advice. I've never got higher rate care, but I feel that I was short-changed for many years because of this quirk. Once you have the DLA you can pay for what your child needs... and if that is a cleaner or a bit of bought-in help, it is up to you. If you go GF/CF and can provide the test results, don't forget to add this to the list of things you do extra for the dla forms.

 

Goodness, what a huge essay! Can't think of anything else to add for the mo.

 

Big Hug and I will be keeping everything crossed that things get better for you.

 

VS xx

[NikkiSmith]

Thank you Flora & VS - It is good to know that it can get easier as they get older!

 

I've tried the gf/cf diet with ds2 but it was torture for him and for me. Adding a battle over food as well as everything else was a nightmare. He only eats Tesco prawn cocktail crisps (and no other brand will do!) and strawberry jam tarts. We eventually managed to get a urine sample and sent that of to Sunderland University for the testing but it came back saying it probably would have a huge effect.

I have tried to get him to take all the eye-q/fish oils stuff but he can smell and taste enything that is different, hence I can barely get any medicine into him!

 

Have been claiming DLA for ds2 since he was almost 2yrs and am waiting to hear back about the renewal forms I sent of at the end of January. He gets the higher rate for care and nothing for mobility (applied 9months ago and was turned down!) but am determined to get it this time as everyone who deals with him thinks he needs it!! I get the CA bit as well, which I have tried allocating to using for a cleaner, but oddly enough there aren't many who are brave enough to come here more than once!

 

ds3, 2yrs, has vision problems; the orthoptist thinks he has less than 80% visio in his right eye, but he won't co-operate enough for them to actually determine how bad it is. He has floppy ankles according to the podiatrist (I thought he had pigeon-toes!) which means he spends an awful lot of time tripping over his on feet and landing flat on his face. Last week I managed to dislocate his wrist (god I feel so guilty!) he made a run for the road and I grab his wrist and pop! It took the nurse at A&E a couple of attempts to get it back in and he barely flinched but the nurse did comment on how floppy his wrist were!

 

 

Anyway, life is a little better today, my dad is off work and coming to play with boys for the afternoon. Half-term is almost over and we can resume the normal routine next week.

 

 

Thank you all again, it really is sooooooooo appreciated!

Nikki.

[Valiant_Skylark]

Hi Nikki,

 

Well I hope your own reply above has reminded you of just how much you have already dealt with (or had a really good bash at dealing with), so I have nothing but admiration for you as a mother and a Genuinely Brill Person! How you've managed to look into that lot already is really impressive; it took me years to sort it all out (lol).

 

Ok, so the diet might have to be re-visited later, when you have had a bit of breathing space and young sons are a bit more able to understand the reasons. Don't feel guilty; just come back to it if and when the time is right?

 

Know what you mean about the cleaner (we had less and less visitors as time went on too), but it IS getting better again slowly. Recently we hosted a "Chinese Takaway and Uno Night" for some friends from DHs work (v tolerant souls) and it went well. Both boys joined us and, although you could tell they were "different", they both behaved brilliantly.

 

Well done with getting higher rate dla - no mean feat in itself. Another impressive success. (You should get mobility when the child is a bit older - We did, but just at lower rate). Anyway, I spent some of the dla money on things like a pyrolytically cleaning oven so that I could just set it to clean, go into another room with the boys, and forget. Just a little wipe over to clean off a teensy bit of ash and... voila! Worth every penny to me in reduced stress (Boys used to kill each other the minute I took my eyes off them, so the oven never got cleaned...).

 

I also splash out on things like those throwaway dusters that almost seem to attract the dust with their static. They seem expensive, but work so well that I don't have to dust often. You may have to "treat yourself" to the odd one-off clean by a cleaning company. You take the boys off into another area and let them get on with the bits you never get around to. Same goes for the garden, if you have one. It'll get trashed when they are bigger, so resign yourself for now and aim to give it a make-over when they no longer need swings, climbing frames and trampolines. Tell yourself that not using all those chemicals on the weeds is better for their potentially dodgy immune systems anyway; you're doing the kids a favour.

 

Re vision, OT, physio and orthotics, it sounds like you are "in the system" or could quite easily argue for referal, and I'm sure, therefore, you will find things improve over time. Not much comfort now, but, again, I'm impressed with how much of a handle you have on all this already. You sound really competent in dealing with stuff that would send the best of us under. Remember that when you have an awful day (and/or night!) You've done so well, if you feel like you are collapsing into a quivering wreck from time to time...perhaps you are entitled.

 

 

More tips:

 

Rice bags:My boys love going to bed and settle much better with their homemade "rice bags", which are heated in the microwave. They are great for all aches and pains. Instructions are on the internet for making them, but if you haven't much time you can even cheat and fill an old cotton sock with dried long grain white rice and just tie a knot in the top. I'd be careful with your littlies, though, that anything you use doesn't represent a choking hazard. Don't use a wheat heat bag if the boys have any problem with gluten (obviously). Our rice bags even went on the Yr 6 week away. When/if you make them, you might need to think about if you'll need several the same... just in case one becomes a favourite object. Solves a lot of problems if you have several bags and rotate them.

 

Sheepskins: Both boys have one each and one sleeps on it, the other under it. The weight is reassuring on top, I'm told. Again, possibly not suitable until the boys are clean, dry and able to regulate their own body temperatures more reliably, but we love ours and they help with a good nights sleep.

 

Good luck ( and glad you are feeling a bit better)

 

Take care,

 

VS xx