One exhausted mummy...

[W3STY17]

We've been battling for years with my daughter (8) to be diagnosed with autism/ADHD.

So many trips to the community paediatricians but due to being 'under the age bracket' we're still yet to have her diagnosed.

I'm really struggling with the broken sleep.

It's becoming worse than having a newborn baby..

She's been referred again as an urgent this time as traits are stronger now so keeping my fingers crossed someone takes us seriously this time.

Anyone else been through the same thing or going through the same thing who could give some advice / pointers...

I've asked for sleep analysis to be done but they've told me they can't???

It's getting to the point now where it's making me ill as I have a few health conditions & my body just is struggling...

Please be kind - the world is a horrible place at the moment.

I'm sorry to hear you're struggling op, everything is magnified when you have a newborn imo.

I have a diagnosed dc and although a diagnosis was a relief in the sense we had some as wets as to why certain behaviours exist-a diagnosis doesn't really change anything. My sons needs were the same ore diagnosis as they are now.

A diagnosis simply opens doors to more support.

Medication may be appropriate, more school support and behavioural therapy may be available after a diagnosis but the summer holidays are a long time to go with no school support. I diagnosis (if in the uk) is also quite a lengthy process.

What traits is it that is causing the most difficulty for your dd and yourself/family atm?

Answers** not wets 😑

You can ask for a referral to a sleep clinic (it definitely is possible), and b) for the community paed to prescribe melatonin (this will hopefully help with sleep).

Telling you DD is "under the age bracket" is fobbing you off. At 8, it is more than possible to assess and diagnose both ASD and ADHD.

Most school support should be needs led rather than diagnosis based, the exceptions will be things like support from the autism specialist teaching service.

Agree with@10brokengreenbottles my ds was diagnosed at 6 for autism and 7 for adhd.

I have had difficulty getting our psychiatrist to prescribe melatonin as it's a hormone but I know many dc in my sons school do use it. (Saying that his sleep has improved naturally with the increase of using strategies)

Also agree the school should base support on needs rather than diagnosis.

Unfortunately, certainly in my experience, you do have to fight for any child support/diagnosis/treatment etc

But please bear in mind, there will be better times. Support groups and charities are a huge lifeline for parents and families of dc with additional needs-you May find some more support and information there. It's also a relief in a way that you're not alone, this isn't just your dc, it isn't just you, there are many parents out there feeling how you do right now. I know I certainly have. Please seek support for yourself not just your dd x

Thank you everyone for being so kind.

It's been going on for so long & although I have a good support network (family & friends) I just feel like no one wants to help me.

I will ask for a sleep study again as when I asked before they said that they don't do them. I know that's fobbing me off as a child in my daughters class has had one previously.

Apologies as-well as I'm need to this & don't know the abbreviations!!

There are so many traits that she displays on a daily basis.

I just don't understand why she can't switch off & continues to have so much energy like she's had the best nights sleep.

I'm running on low & just don't feel like I get chance to catch up.

If I've missed anything I'll have a read back through the comments & answer them x

Without sounding patronising is she getting enough stimulation and chance to burn off the energy? I know it's hard with a newborn.

My Ds can be up at 7 and be on full throttle until 11.30pm+ sometimes.
Most days I have to get him out of the house for a walk with the dog/play outside. I encourage him to go on the trampoline.
I even encourage him to help me with housework sometimes - getting him to hoover or lift furniture for me while I Hoover, carry the laundry basket to/from the garden, rake leaves, polish furniture-anything that will use some strength/energy
My Ds isn't very crafty otherwise I'd suggest outdoor chalks, play dough, baking etc
Scavenger hunts indoors or outdoors-something yellow, something smaller than your toe, something fluffy, 3 different shaped leaves etc
Water can also be an easy occupier and stimulation. Frozen water bottles stimulates my ds a lot, the melting, the temperature, the noise it makes. Or a hot chocolate can help calm him and encourage him to sit still and occupied for a while. Showers are a good stimulant. Baths with bubbles/goggles/bath bombs/toys/even glow sticks- any thing to stimulate him.

It sounds silly but more stimulation seems to help calm/regulate my Ds. The more he has, the happier and calmer he is.

Bedtime routine is now, a lavender bubble bath, few lavender drops on the bed, a small warm cinnamon milk while we read together-I read then he reads (Roald Dahl/David Walliams type books). After that we do the weather story massage- you can find this online. It's a quick 5 minute massage to do on the child's back while telling a short weather story. It's soft and deep tissue massage which he loves particularly. My Ds also occasionally does it to me which is quite relaxing 😁
So although bedtimes take a little longer than I'd like (I've 3 dc) if I don't do this routine or rush him or simply sometimes he's not ready to sleep-he can be up until very late. With that routine I can have him settled by 9-10most nights. I know that's late but the summer months are always harder with the light nights. Darker nights and it is possible I can get him down for 8-9.

I don't know if any of this will help but it may be some things to try?

@Ismellyou

No not at all patronising.

She gets loads of stimulation. She is forever on the go. We go on walks, forever on her scooter & trampoline. She is always doing art & craft plus maths exercise books as she loves maths.

I'll try those tips thank you, I'll try anything!!! X

You don't necessarily need a sleep study, not all referrals to sleep clinics undergo a sleep study.

ismellyou that is strange. Melatonin may be a hormone, but it's a naturally occurring hormone, it's just some ND people don't produce enough. It is very safe with few side effects.

@10brokengreenbottles

Oh okay! Thank you.
I have no idea with all of this, I've been struggling for years with no help from professionals but due to my health getting worst I just can't do it anymore.
I'm really struggling.

It's now effecting the whole house more than ever.
I'm worried about my husband as he's getting next to nothing sleep because of it & then he has to work in a dangerous job.
She just doesn't seem to understand things like this.
She doesn't care about anyone else or anyone else's feeling.

I have spoke with the doctor before regarding sleep & they stated they can't do anything to help her sleep, is this correct?
I just feel like all these years I've been pushed from pillar to post & fobbed off left right an centre.

I'm just so desperate for help & advice.

I'm really at the lowest point I've ever been x

I think OP said it was like having a new born baby, not that she had a newborn.

At 8 she isn’t too young to be diagnosed for ASD or ADHD, hopefully you’ll get somewhere this time.

Definitely continue with the medical diagnosis and intervention. Melatonin does help many but not all. In the meantime maybe someone like this can help?

www.thesleepfixer.com/

@openupmyeagereyes

I'm really hoping we get somewhere this time & that they don't discharge her from the system.

I will be digging my heels in this time to make sure she gets the help she needs beings she's over 6 years.

Thank you I'll have a look into the link x

Just called to chase up the referral.

It was initially sent as an urgent from the GP. The community paediatricians downgraded it to routine so my GP sent another letter stating it needs to be urgent.

Just got off the phone call & they've stated that the appointment is staying at routine...

I just don't know what to do.

I've shut myself in the bathroom for a little cry cause I feel like no one wants to help me even though we've been battling this for years.

If I knew where to go to get a private assessment I would do it but I haven't got a clue where to even start.

Okay so little update...

My DD was seen by a neurologist on Thursday due to her constantly migraines on a daily basis for the past 7+ months.
He has prescribed her Melatonin (2mg) to try for the next month to see how we get on.
Going to sleep at bedtime is now no longer a problem but she is still waking through the night!

I'm exhausted...

I know it's early days but I was just praying this would work & keep her asleep!

Is anyone else's children on this? How long did it take to work?

What sort of melatonin does she have? Is it slow release or not? Slow release works well for some but not all. We have used 2mg slow release melatonin and it didn’t keep my ds asleep either, unfortunately. He generally doesn’t wake a lot in the night but is a very early riser with periods of being up from 2/3am.

Did they talk about increasing the dose if it wasn’t effective? I’m
Not sure it has a cumulative effect but you never know, she may settle into a better routine if she settles more easily in the evening.

You have to persevere, DD hasn't been taking it for long enough for you to even be in a new routine.

Do you have a CAMHS crisis number?
Does DD have an EHCP?
Do you get DLA?
Have you asked for social care assessments? A carer's assessment for you and an assessment via the disabled children's team for DD.

You don't have to answer just things to think about.

If you did want to go private NAS have a directory of people who assess for ASD, and psychiatry UK assess for both ASD and ADHD.

@openupmyeagereyes

The medication is going to be reviewed in 30 days as that's all they gave her.
The medication is prolonged release.
I'm just hoping with time it'll get better as it's still early days.
I just wish she would sleep through the night. It's torturous.
I don't want that to come across mean or nasty but there is no reason for her waking up & I just wish she would sooth herself back to sleep instead of me sitting outside her bedroom door waiting for her to go to sleep.

@10brokengreenbottles

I don't have a crisis number for CAHMS.
What is a EHPC?
No we don't get DLA.
Is a social care assessment social services??
I would love to be able to get her a private diagnosis but I really can't afford it.
It's been many years (6 now) of trying to get her the right help but everyone keeps sweeping it under the carpet. I guess it's okay for them to dismiss it as they're not the ones who are dealing with the issues.

Well it’s great you have a review in 30 days. If you aren’t already then keep a sleep diary so that you can show them what’s happening.

In the meantime look at basic sleep hygiene and make sure there are no glaring errors in your routine. This is easily Googled.

Failing all else, would she sleep better if co-sleeping with you? Probably not ideal but needs must and all that.

At night we cycle through different levels of sleep: deep to light to REM in approx 30 minute cycles. Deeper sleep occurs earlier in the night with more light and REM in the early hours of the morning. Plus we wake multiple times a night but generally don’t remember. We wake and if there are no threats or changes then we simply fall into a new cycle. Some kids (and adults) find it hard to do that and wake more fully. If there are changes in the environment - light is now off, mum isn’t there any more… - then it can cause them to wake up rather than going right back to sleep. Sometimes they just have an active mind, like when you wake in the night worrying about things.

So it might seem like there’s no reason but there is, even though it’s hard for us as parents.

Sorry that should be 90 minute cycles.

Ask for a crisis number.
An Education, Heath and Care Plan is a legal document in England that sets out a child's needs and what support they require. If you are in another UK country they have their own versions. If school and day to day life can be made easier for DD nights may improve.
You should apply for DLA - the Cerebra guide is helpful when completing the forms.
Social care assessments are from social services. A carer's assessment would be from adult social care and an assessment for DD would be from the disabled children's team.