Feel so let down and struggling

[nutleywombat]

Hi, I've posted a few times before about my DS who is Autistic and waiting for an ADHD assessment.
He has many struggles in his life due to this, one being that he struggles to fall asleep. This has been an issue for many years, when he was younger it was up and down, with some periods where he wasn't too bad. But over the years it has increased and is every night now. He is 11 and we still have to sit in with him at night to support him, otherwise it ends in a full meltdown for several hours where he looses control, screams, becomes aggressive towards us and can self harm.
We have contacted various agencies for help and taken onboard their suggestions of strategies to use, we have tried them all but none have helped. He tells us that his body has all this energy running through it and he can't switch of his brain. I know that this common for chldren with ASD and ADHD so after we got a diagnosis we asked the GP to refer us to a paediatrician for Melatonin as know this can sometimes help. The referral was refused on the basis that we have a private diagnosis (we had to as it is a 3yr wait and we just couldn't wait for that/thought it would be quicker to access more support for him with a diagnosis). I argued that this was unfair and we are desperate for help after trying strategies without success over the last few years (I have long list if evidence of seeking support/strategies tried). We got re-referred but it has been refused again. Told they are not a sleep service, to contact NANSA try their strategies and then after this could ask for another referral.

I just feel we are family in crisis and feel so overwhelmed and let down! Whilst it has affected my DS in all areas of his life as he is exhausted and then cannot cope with his sensory/focus issues, has high levels of anxiety about bedtime and awful mental health, our DD gets less sleep as he keeps her up with the meltdowns, and myself and my husband are struggling with our mental health. I just see no way that anything will ever improve, I spend so much time repeating myself on phone calls to agencies, telling them about all of my DS issues and seem to get no where! I am just at loss and feel broken by it all.

Sorry, this is mainly me offloading, feeling tearful and a failure tonight.

I sympathise, DS1 is slightly older and has complex MH problems. He still sleeps in our bed and needs someone with him to fall asleep and wakes often. We have tried everything, including several medications.

Have you tried asking for a referral to a sleep clinic?

More widely, have you had social care assessments - an assessment from the disabled children's team for DS and careers assessments for you and DH?
Does DS have an EHCP, with sensory OT provision and MH therapies?
Do you have a young carers services locally?

Hi sorry for delayed reply.

We had applied for a referral to a sleep clinic but heard nothing, chased it up and there is a 9 month waiting list, so we would have another 3 months to wait.

He doesn't have an EHCP yet, but think moving forward I will apply for one.

Just always phone calls to make, repeating all the issues my DS faces (which I find deflating and exhausting) books to read to educate myself in ways to best help him, emails to send, follow up again several times and then at the end of all this I don't feel I get anywhere nearer to accessing help for him.

Personally I would just buy melatonin from the US, where it is an over-the-counter product. This is what we do for DD(11) who struggles with sleep due to anxiety (we used to live in the US). 3mg is generally considered to be a good starter dose for children/adolescents.

There are quick release and slow release versions - you might need to experiment to see which is most effective.

I buy DD's from Biovea. It isn't ideal but CAHMS is basically not functioning where we live and we've had to take matters in to our own hands.

This is what we buy for DD

www.biovea.com/uk/product/detail/21514/melatonin-3mg-240-vegetarian-tablets/?deptid=0&cid=0&mid=0&kw=melatonin

Thank you cheeseismydownfall, yes I think we might have to do that, I think it will just help alleviate the anxiety he has about not being able to fall asleep as hopefully it will help him to fall asleep more quickly.

My son is younger than yours he is 6, up until the age of about 3 he slept ok but since then doesn't sleep much at all, he is on phenergan and melatonin from his paediatrician and he still manages to stay awake.
His bedroom is downstairs mainly because he is quite dangerous on stairs and obviously with him not sleeping we would worry if his bedroom was upstairs, he figures out stair gates etc or if he can't he will just climb them obviously dangerous again.
For around 2 years now I have been sleeping downstairs on the sofa if I try to go to bed he will then realise I'm not there and bang his head, bite himself, scream or he will try and get out the front door because he thinks I must be outside luckily we can lock our front door.
We are waiting on a referral to a sleep clinic in London but have been on the waiting list 7-8 months so far.