Sorry folks I am out of lemonade

Hi folks

I just thought I would pop on to give you all a quick update of where we're at.

I was intending my next post to be entitled 'life gives you lemons you make lemonade', but right now I'm feeling more like a squeezed out, dried up bitter old lime than a refreshing glass of lemonade... so that one will have to wait for another time I'm afraid!


The house is silent, and the rain is drumming against the window. Its blumin' freezing and dark and I'm waiting for the coffee hit to kick in...it hasn't yet happened so I'm off to make myself another cup...

Back now.

So, its currently 3.30 in the morning and sleep evades me yet again. I am beginning to look like the walking dead, no amount of concealer is gonna hide these bags under my eyes. (So please excuse any typos you may spot as you read this!)

I am still battling on to get my son the education he is entitled to. My quest has now broadened to legal advice, complaint letters and all things negative. I really don't like having to go down this route, but I feel like we have been backed into a corner with no choice really.  Dealing with this crap just slowly wears you down doesn't it, and it's hard to stay positive when all you seem to face is brick walls in your way.

I'm not sleeping, and my mind and body now feels like a bloody washing machine stuck on a never-ending spin cycle, which won't be helping me feel any better about it all because I'm just so bloody tired. It really is exhausting. Every day is filled with emails flying this way and that, phone calls and therapy. And then when all that settles down and I try and sleep my mind kicks in with all the things I have yet to do, the frustration at the whole situation and the worry of how things will develop.

And all the while still dealing with daily life. A Teenager going through GCSE'S and the incredible stress she is under. The cooking and cleaning and ever-growing pile of laundry. A dyslexic daughter who is struggling at school and feels like she won't ever achieve anything. Bills to pay and trying to launch a new business venture all at the same time.

Trying to keep focused on what I am eating because I don't want to undo all the hard work, I put in last year losing all that weight when really all I want to do is eat my weight in chocolate and crisps and hide from the world under a blanket watching Netflix.

We are also really lucky to have been referred to the disability social care team (I managed to get the referral done myself ... at my own request) but even that adds another layer of worry to my saturated brain even though I bloody wanted it in the first place and know we need it!! Irrational stupid things like... I have to make sure the house is clean and hovered when the social worker comes, what will they think of my parenting, and there are far more people out there that need more help than we do so I don't want to waste their time.

Crazy isn't it the way we over think and over worry everything.

So right now, folks I'm really sorry that it isn't refreshing uplifting lemonade that I'm pouring out to you all today. And the last thing you probably need is to hear me whining. So, I will shut up now. I have moaned now far too much for anyone's liking.

Maybe after a decent night sleep (ha ha wishful thinking) I may be able to squeeze out a few drops of the good stuff for you next time.

Because there is a lot of good stuff.

I have some amazing people that are fighting my son's corner with me and amazing family and friends that are keeping me propped up. And my son's mental health has improved drastically these last 7 months he has been off school. So, I have to focus on that and take each day, heck each hour as it comes! Because there is a lot to be thankful for. I will keep fighting.

So, I will be back soon to let you know how things are progressing, please keep your fingers and toes crossed for us all.

Take care folks
With much love
Mrs M xx

Summer holidays Diary Day 16- 'Sleep'

Day 16-

It's 11pm and it's been a pretty full on rainy day here at home, we've had lots of visitors and comings and goings all day but he wouldn't come downstairs while anyone was here.

I've just collapsed into bed with a brew and I'm hoping he sleeps ok tonight!

We're currently waiting to be seen by CAMHS again to assess his melatonin as puberty seems to have affected how well they are now working!

Got another two weeks yet until we get seen though
Mrs M 💤

December 15th - Sleep

Sleep ( ha ha )...

Links....

NAS Sleep Guide

Autism West Midands Sleep Guide

Relaxing massage oil

Social Story Example

Weighted Blanket

Getting ready for Bed visuals 

Sensory mood/ night lights

Well what can I say….

Keep routines in place wherever possible.

Visuals can help prepare children for any changes to the routine, and work well for children like my son who can often becomes demand avoidant at bedtime. He will often follow the visuals better than me telling him again and again.

There will be the odd few late nights, we just have to accept that.

Create a social story to help your child to understand the bedtime routine(see link above.)

If your staying with family,  taking your childs own duvet/ covers/ pillow/ night lights can really help them settle.

Christmas Eve may well be a long night.. sorry folks no advice for that one…. other than drink Baileys and eat lots of mince pies to get you through! My little man has already warned me he knows he's not going to be able to sleep that night!

Sounds silly but make sure to have enough medication for the festive period as lots of surgeries work on reduced hours as do chemists and this can mean getting your prescription can take longer. I have set a reminder on my phone or that's the stupid kind of thing I would forget to do.

Think about the layout of the room. It can help to show them the function of the room has changed from somewhere to play to somewhere to now sleep. My son now has a separate desk for watching TV (AND HE ONLY EVER USES HIS BED FOR SLEEP...NOTHING ELSE .)

A dark room will naturally produce melatonin so keep lights dim half an hour before bedtime. Keep the lights in the house bright everywhere else in the house so there is a contrast.

It can help to use motivation to help encourage sleep, and it has to be something that is manageable and your child actually wants. Use reward charts.

There is evidence to suggest  that TV and screen time can stimulate kids before bedtime. So it could be worth considering limiting this half an hour before bedtime.

My son likes to take a snack to bed as he often feels hungry before he falls asleep.

Have a set pattern of things your child always does before bedtime and try to stick to it whenever possible. It's also worth keeping a consistant get up time in the morning throughout weekends and holidays. 

Worry dolls under the pillow/ worry boxes / diaries can help if children write down what is worrying them. Also knowing what will happen the next day can help alleviate any worries that prevent sleep.

As tempting as it is to stay up late and watch another episode on Netflix remember that kiddo will still be up at the crack of dawn so ensure you have lots of coffee stashed in the cupboards. I'm a sucker for late nights but then always regret it in the morning.

Weighted blankets can really help kids to settle to sleep at bedtime, it may be worth investing in one if sleep is hard for your little one. They work by relaxing the body and they can be made or bought online.

A massage before bedtime can help a child to relax as can sensory lights ( links to examples above.)