How do I carry on?

[cornflower346]

Just that really...

DS hasn't slept for years but now I'm averaging 1-2 hours broken sleep a night, my nerves are shot, we've tried everything, doctors won't help, DH and other DS having to move out to get some rest.

I'm making huge mistakes in my job. I crashed my car into a post the other day as I was just so tired. I don't know what to do!!

I can't afford to quit my job, but at the rate I'm going I'm going to get the sack!! Love him so much but the evenings are making me feel sick with anxiety, the screaming, hitting, and banging is horrendous. I've lost a stone in a month because I can barely eat.

I know there's is no other option but to carry one but this is so hard. Please be kind with your comments. I'm the best mum I can be and love both my children with all my heart x

Is he diagnosed OP?

@TubDubDeRubTub on the pathway, in our area this typically takes 3-4 years for diagnosis. We are 10 months in, he's only 4. Non verbal, high sensory needs, no understanding of spoken word and will not use visuals. He's a gorgeous little lad but my goodness this is really hard :-(

I bet it is really hard. I lived with my friend for a few months and her DS was 4 and very similar to your DS. He was still in nappies too and would only eat certain beige food ( mainly toast ) ... he was her 3rd and this was 2017 so waiting times were no where near as long but he was diagnosed by the time he was 3.

My own DD has just had her ADOS assessment and she is almost 10, we waited 4 years and was only bumped to the top of the list as her behaviour was affecting all of us so much

Social services got us a lot of help, is it worth getting in touch with them and seeing what support they can give? Because their great at referal to other services, my DD would still be on the ND waiting list if it wasnt for spcial services.

They spoke to the single point of access at CAHMs who then spoke to their people and they bumped DD to the top of the list.

Does your DS enjoy any sort of deep pressure stim? My DD enjoys a long "hard" cuddle. As does my DS funnily enough. You can get blanket things that "tuck" them in which feel really nice for some autistic children too

I have found social services to be a very valuable support system, my DD hasnt been diagnosed yet ( awaiting assessment results ) but social services even got me in touch with the council people who do a personal carers budget and I'm eligible for that because of DD's needs. So you will too.

What things have you tried that dont work for DS?

When you say doctors won’t help, can you explain more about what you mean? Have you seen a specialist sleep clinic? Has DS ever seen paeds or CAMHS?As well as a referral for an autism assessment, is DS already under SALT? What about OT?

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS. On their website, Contact has model letters you can use to request these. Also look at your local short breaks offer.

What are DS’s needs like during the day? What support does he have during the day? How is nursery/school? Does he have an EHCP?

How is DS’s eating?

@TubDubDeRubTub thank you for yo ur kind comment!

In our area the waiting list from beginning to end of pathway is 4 years. DS has been on the pathway since Jan, very unusual for a diagnosis to be given under 6 in our area (diagnosis is by multi assessment panel not pead) we receive high level DLA and DS recieves band 3 send funding. He is very high needs and has a lot of self harming behaviour such as hitting his head, biting himself & scratching until he bleeds.

We've bought numerous weighted blankets, sleep tents, sleeping bags, and some things have worked temporarily but we have never gotten more than a few hours sleep but it's getting a lot worse. I really am struggling to function.

Thank you for your advice re- social services, this is something I will look into as we really are desperate for help! Everyone I ring seems to pass me from pillar to post and in the end it's always 'ring the gp' but gp said nothing can be done at this age :-( x xx

He is on the pathway for diagnosis average time is around 4 years, very unusual to get a diagnosis before 6 here as it is assessed by MAAT. DS is under SALT. In our area there are no sleep clinics and I have been told by HV & GP that they will not refer for sleep issues as this is part of being 'neurodiverse' and that some children just don't need sleep!! We had a referral to OT over a year ago which was an email containing some videos then another emailing stating we had been discharged,

For some background info, our area has recently had a commissioner come in to do investigations into children's services as there are many failing, the waiting times & delays are huge and LA are over stretched with no money.

Things we've tried...
Sleeping tents, weighted blankets, piriton (occasionally at advice of gp) co sleeping, various sensory items & lights, just about anything that Amazon sells that promotes sleep!

DS is very obsessive and must have his bed made a particular way which included blanket crease free and teddys in there right places. Once this gets messed up all hell breaks loose, so nights we can make the bed up to 30 times!

I've not had a careers assessment although guess I would qualify but couldn't claim the allowance due to my earning. I really am scared of loosing my job as I'm messing up ALOT at the moment.

Does your ds
see a peadiatrician? If so, can you put a call in to explain how you need to a telephone call , and ask them to prescribe melatonin? I know GPs don’t like to prescribe it but if paediatrician is out of the question due to wait times, can you put a call into the Gp
to ask them to prescribe the lowest dose 2mg and crush it up and try it. I know some people source it off the internet .

social services are brilliant when you get a good one, put an urgent call in.

everyone can see you’re on the pathway so will be a bit more open to coming in to help.

OT can be accessed through your council, maybe you need padding for walls or cupboards nailed to the wall to stop them being destroyed, it’s worth a shot for a call to the LA. They usually have a send OT who can come in and apply for grants on your behalf or access the budget for alterations to make life safer for your ds.

I am trying to think of something quick, as you have your hands full with work too, the above are calls you could make quite quickly and get into the system.

Eating is another one to focus on , I know it sounds silly to say but even making sure he’s quite full before toilet bath bed helps.
Warm weetabix was great in those early days before bed.
A massage before bed if he will tolerate it.
what about vitamins? If ds has a healthy varied diet ignore, but could help to add those in.

cosleeping really helped but over and above everything above, what helped me was a clear routine , CBeebies on in the background showing everyone’s going to sleep-
routine of programs before bed , full belly, toilet, bubble bath, low level lights everywhere, melatonin and Co sleeping . We did this for years.
then direct payments for carers and respite introduced from 9 years old.

This is so very hard. Keep posting.

The waiting times are awful arnt they. Have you gone through CAHMs or right to choose? I went though right to choose as an adult and received my ADHD diagnosis within a year and my ASD diagnose within 3 months.

The childrens times are a lot longer but they do do right to choose for children too and the waiting lists are shorter than CAHMs

I agree with the above poster, it's worth asking about melatonin or have a look online and see what other options there are. My DD seemed to manage a lot better when I started giving her vitamins especially magnesium.

Definetly do give social services a call, they have played a massive role in how calm our lives are right now. Our social worker met with the CAHMs team and explained about our home life. She rang me today to see how the assessment went and she is getting in touch with CAHMs to see how long it will be until the report is written up.

I have friends with SEN children who have been on the waiting list for over 4 years in our area, if social services hadnt of helped us, DD would still be on the list

I'm not sure if the personal budget has anything to do with your income? But a social worker will be able to really help and support you,

My DD does not need any where near as much support as your DS, shes very articulate and has always attended main stream school, never delayed in any sort of aspect

Social services helped us because she was constantly self harming, hurting me, her brother, other children. Up until January this year I didnt have any idea either of us were autistic

I know people dont tend to advise tablets ect, but, my friend let her DS watch his tablet when she needed to catch up on some sleep, he was so engrossed in what he was watching she was able to catch up on a small portion of her sleep that way....

Your doing really well!! Its very difficult and can be a very lonely journey, throw in lack of sleep on top and its 10 x worse,

... I've just bought a rocker gaming chair for my DS and my DD absolutely loves it, is there somthing like that you can get him that he can stim on? I cant think of the name, but theres a proper spinning chair for SEN children, maybe somthing like that would help tire him out enough that he sleeps for a little longer?

Request a referral out of area to a sleep clinic. Complain, including to the ICB, if they refuse. It isn’t acceptable to say sleep issues are part of being ND. There are things that can help, including medication.

Request another referral to OT. You want both a general OT referral and also an assessment looking at how to make the house safer and better meet DS’s needs. Also, sensory OT if your ICB still commissions this on the NHS - not all areas do. You may even be able to re-refer yourself.

A carer’s assessment from social services is nothing to do with carer’s allowance. Completely separate.

If you haven’t already, request an EHCNA yourself. This is governed by statutory timescales that can be enforced. An EHCP can provide more support in general. If general life is easier, this is likely to have a knock on effect at nighttime.

If you can afford it, parental leave may give you some breathing space in the immediate.