Nightmare – when I’m gone.

Bear with me its a strange one.  I can’t stop thinking about a dream I had last night.  I’m exceptionally stressed out at the moment and I think that may have a bearing.  The dream or part of it goes like this ……

I’m on a London double decker bus with my face pressed against st the window and I’m screaming and banging on the window.

Out of the window there’s Reilly around age 30.  He’s stood at a bus stop surrounded by a load of people.  He’s on his own and still non verbal.  He doesn’t know which bus to get and can’t ask for help and is getting upset.  I’m banging but he can’t hear or see me and I can’t get off, my bus pulls away.

God the tears writing this.

From what I can pull from the dream its my fears for his future and its rocked my core.  I know I’m not the only one, there are millions worrying just the same.

I’m not prepared for this.

How are you preparing for your child’s future or like me have you no idea where to start?

I’ll be looking into what is available currently to calm my raging anxiety about my boy which I will share.

What’s your greatest fears?

 

 

 

 

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Kids in Crisis – my worries

I’ll go first.

Anxiety.  Depression. OCD.

I lovingly refer to them as my mental threesome.  Every single day I deal with an aspect of these 3, usually a combination of all 3 together as they all thrive off each other, one gives the other a leg up so to speak.  I hate it.  I’m jealous of people who have never been afflicted.  There is only one thing more terrifying than me suffering from mental health issues and that’s my children suffering too.

Panorama this week was Kids in Crisis.  Children with mental health problems unable to access the right help at the right time.  It broke my heart, not just for the children but also their desperate families.

You can watch it here Kids in Crisis – Panorama

We all worry about our kids well-being,  that’s our jobs as parents but knowing the scales are tipped in Reilly’s favour makes me sick to my stomach.  He’s already earmarked just by being autistic, for many autistic people  mental health problems go hand in hand such as anxiety, OCD and depression.

US study  found autistic people die at an average age of just 36.

36!

Why? well there are many factors that contribute to this.  Suicide being prevalent and also death by injury, drowning is a massive factor.  Autistic people are more likely to suffer from diabetes, heart disease, gastro problems, lack of sleep, bullying etc to name a few.

So where parents like myself go for help for our kids?

CAMHS Child and Adolescent Mental Health Services is the NHS service that assesses and treats young people with emotional, behavioural or mental health difficulties.   Kids in Crisis looked at the horrific waiting times that children have to wait to be seen.  The service is overstretched and rejecting more children than ever.  How sick does a child have to be before they get help?  suicide ideation, self harm, numerous suicide attempts?   Apparently so.  I have been in contact with people who have said they have had a brilliant experience with CAMHS but they are few and far between.  The reality is there are families in despair waiting for their children to be deemed ill enough to receive help.

Early help and intervention is crucial.  Years spent on waiting lists exasperates some conditions.  Conditions are allowed to escalate to breaking point where the child has become very ill indeed sometimes making numerous attempts on their lives.  Children trying to take their own lives.

A broken leg would attract instant help, why not our mental health?

These are my worries for the future and millions more families just like ours.  Mental health needs more investment NOW.  Speak up, speak out.  Not just for more investment –  1% of the current NHS budget just isn’t enough, but talking about mental health is a way to make kids feel like they aren’t alone.

Funding in the North East is being cut left, right and centre.  Counselling services in schools now considered a strain on a stretched school budget but at what price?.

How can we expect children to talk about mental health when everyone around them remain so guarded.

https://youngminds.org.uk/find-help/

https://act.youngminds.org.uk/join-our-fight-new-era-young-peoples-mental-health

 

 

 

 

 

 

 

Little things

Yesterday was one of those days that come along just when you need a reminder that the world is not actually filled with horrors.

Ellis was very kindly invited to a birthday party at the Metrocentre, I have a love hate relationship with the place.  I only like parking where there are 2 spaces next to each other which is a near impossibility here and for someone that suffers from anxiety my biggest fear is no quick escape route to fresh air,  there’s no windows when you are walking about and it makes me feel claustrophobic, sometimes.

I found my little bit of sanctuary after dropping Ellis off at Game and found I had 2.5 hours to do whatever I please.  Yay says the Christine who craves time alone, boooo says anxious Christine – what if I need to leave earlier, what if I have a panic attack etc etc.  I wandered straight to Waterstone Cafe and bought the book I had been waiting for.  Notes on a nervous planet by Matt Haig.  All bout how to stay sane in a world that is anything but, ironic that 2 armed cops were stood outside the window when I looked up.  My incessant need to be attached to social media for my charity work and Reilly will be the downfall of me and something I need to address and get some organisation in my life.  We’ll see how that goes, its not the first time i’ve said it!

I grabbed a tea, soya milk and tiffin and started to read.  I could have stayed for days.  I NEVER do things like this.  Im that busy trying to be busy to stop overthinking everyday life I had forgotten there are simple pleasures in actually taking 5 minutes for myself.

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I then decided I would do something else I never do and went for a make up consultation at Urban Decay.  I an absolute gem of a girl called Rhona invited me to take a seat and we chatted while she explained what a setter was and the likes and even proved they work by doing a demo, i’m cynical, i’m not the girliest of girls and still apply all of my makeup  with one finger, quick dressing gown wipe for next product, you get the picture.  Anyway she was right I was wrong and that never happens.  We discussed our love for Harry Potter and got to talking about Reilly, lack of sleep, autism and defibrillators in no particular order.

When I was leaving she gave me her email address and said she was inspired by the things we talked about and she would love to do my makeup for free for our winter ball in December.  I nearly cried.  Biggest of thankyous to Rhona she probably has no idea how much she made my day and i’ll definately be taking her up on her offer.

Little things that restore my faith in human nature.  Ellis had a great day at  his party, Reilly had a great day at the beach with his dad and I went to bed trying to read my book by the light of my phone trying not to disturb the tiny cherub sleeping peacefully beside me.

A good day xx

A right tit. Literally.

I’ve not written a post in a little while.  The charity is crazy busy and the life of Reilly play, film, plans are matching it with hours consumed at the minute which is good, I think but my head has also been elsewhere. Distracted and anxious.
For the last few months I’ve had a niggle in my right boob.   I have literally felt a right tit numerous times a day over the last few weeks, something feeling just not right. Its probably nothing. But as a mama probably isn’t enough so off I went to my GP with Shane in tow to talk about it. We shall see what becomes of it, probably nothing but I can’t afford to pee about.  Apparently because I’m under 50 and don’t have a definite lump I don’t meet the criteria but I didn’t leave until I had a referral.
Reilly’s last few nights of no sleep has given me the chance to do what I do best.  Catastrophise. There is no better time than 4am to get those horrific thoughts flowing.  I’m not the first and i’ll not be the last woman with the 4am fears. Its the first time I have ever seriously questioned my mortality, sat and talked to Shane about will’s and arrangements etc. Not comfy conversations but so necessary.
As a parent you want to be immortal, as a parent to a non verbal autistic child I need immortality and then some.  I actually played through the scenario in my head and cried at the thought of my boy not knowing where I was. Would he understand? He relies so heavily on me alone its unbearable to think about.  So when a GP says its rare for something to happen l reply with so is losing your brother at 32 to a ‘rare’ heart condition. I take no chances.
I am merely trying to cover my bases, second base in this instance because its the only thing to do.  So off I went this morning to the breast clinic to get checked.  Appointment came through quickly thankfully. Consultant agreed there was a difference and sent me for a mammogram and ultrasound straight away.  Jesus they are tense times those waiting rooms.  I am very happy to say no cancer. Dense, thicker area but not cancer.  The relief is huge.
Check your bristols lasses, don’t just share hearts on Facebook or say you’re wearing red knickers in the Bahamas or whatever the latest thing is on Facebook and if it doesn’t feel right get cracking.  I know several ladies early forties who have had breast cancer in the last year or so and to them and all the others facing breast cancer daily I send my love xx

and relax ….

Tomorrow is Ramside Hall Eve. I cannot wait!

I have felt more stressed than normal over the last few weeks and there is no better time to get away from it all, even if it is only for one night. This is my christmas present from Shane.  When anyone asks me what I want for birthdays, christmas etc the answer is always the same, let me get away for a night, free from responsibility and some time to breathe. I will also take the opportunity to meet up with the awesome Autistic Advocate for a coffee and discuss moving things forward with all things autistic in the right way.  His blogs blow my mind and give great insight to actually autistic lives.

Managing stress is something that I’ve done since I can remember.  Anxiety shacks up with depression in my mind and doesn’t even pay rent, unwanted squatters who I just cannot evict.  Sometimes they are noisy, other times we get along dandy – at the minute they need an ASBO.  When there is a lot going on they crank up the house parties and stop me from sleeping.  Couple that with the fact that I’m an incredibly busy lady with 3 boys, 4 if you count my husband and its no wonder.  It’s not unusual for me though and i’ll ride the wave like I always do. This too shall pass, might be like a watermelon from a birth canal but it will pass.  I’ve always been very open about the fact I take meds and have done for years.  I really wish there was more discussion around it.  How the hell are people supposed to know that they aren’t alone when we are still speaking in hushed tones about it?

Being Reilly’s Mam brings its challenges but I can tell you something for sure my 11 year old NT child is stressing me out wayyyy more than Reilly at the moment.  When did 11 become the new 15?  I even offered to rap on his youtube channel to cheer him up yesterday and was told to stop trying to be peng.  Because I’m down with the kids I know what that means but I played on it and said pardon i’m nothing like Pingu.  No laughs just a look of utter disgust that reminded me of myself at approximately 13 with my awful perm and vile attitude to match.  He’s his mothers son that’s for sure.

I try and relax as much as I can.  Mindfulness is a huge part of my routine and EVERY night I unwind listening to dulcet tones and try to breathe correctly, most of us don’t.  It works you should try it.  I’ve signed up to yoga classes.  I’ve wanted to do this for years and always been a bit scared of the odd sneaky pump making its way out during a downward facing dog. Fingers crossed I can behave.

Nights away to just be myself are so valuable I cannot put it into words.  I get a bed to myself, MYSELF!  I get to be alone, I can go in the bath with additions of toilet brushes, toilet rolls, dog shampoo, Lightening McQueen, underpants etc. I’ve even treated myself to a bath bomb, this one will not go down the toilet like the others.

I will eat from a china plate, not a plastic Christmas plate and I will eat at a table and not the 10th stair up where I cant be seen shovelling it in like a jazz band drummer in a bid to eat while its hot without it being thrown across the room like a foody discus.

I will swim like an overweight mermaid and sweat in the sauna. I might even read something that’s printed in an actual book!  The luxury of it all!  I don’t want any phone calls unless its life or death.  I don’t know or care where the socks, shinpads, PS4 controller, insert your own here are.

I will try and forget that I have recently acquired some new wall art up my stairs and in my bedroom courtesy of Reilly and a yellow hi-lighter, to be fair I really don’t give a f@ck about this if I’m honest.  Pick your battles.  This is an easy one and will match his earlier works of art dated circa 2015.  It’s just another job to add to the list of never ending jobs that never get finished at home.

So Ill return on Saturday hopefully refreshed and ready to take on the filming of the short for The Life of Reilly on the 11th & 12th. I’ve attended many meetings lately about it and i’m super excited to see it come to life. This is just the beginning for The Life of Reilly. Where it stops nobody knows.

(I should really add that I usually don’t sleep when I’m away, the intention is there but I lie in bed wondering if Reilly is ok, how maybe I shouldn’t have went and what the breakfast will look like).

 

 

 

 

Just keep Swimming

1 more sleep. 1 more sleep if i’m lucky.

Last night Reilly went to bed and was asleep at 9.  He woke up at 12am like Aurora had just been kissed.  He was up until 6 this morning when he decided to have himself a little snooze thankfully.  Its rare these days thats its as bad as this.

I decided I was going to make sure he was tired tonight so decided I would brave the swimming pool. A quick wafting of his swimming trunks between Reilly and the Mac screen and Reilly was fastening himself into his car seat as quick as a flash.

I NEVER go to the swimming baths:

  • a) I am fat
  • b) I am a shade paler than Winterfell
  • c) I hate getting splashed.
  • d) Reilly having a meltdown and the thought of me legging it after him in a bathing costume turns my stomach (and the poor others who witness it).

Given my nearly 2 stone weight loss though I thought suck it up you are 45 years old and noone gives a flyer what you look like and off I went. Ellis decided he was coming too. Strength in numbers.

I drove off with my brood thinking I was great, one of them activity mams I despise normally, jealousy is a terrible thing. The mere sight of a fun filled family social media snap, usually fake can sometimes send my resting bitch face into a state of unrest.

Ellis splashed me at every given opportunity and I floated around like Red October looking for people I knew to get out before I would make my exit and head to the showers. Surfacing from the warmth of the baby pool on look out like a massive periscope.

I had another reason for going swimming. It was a secret covert mission to wash Reillys hair! I cannot do it at home. I cannot watch my boy ram his face into the tiles and scratch himself when attempting to wash his hair. Can’t do it. Is it the smell, taste, feeling, sensation? We don’t know but what we do know is it is much simpler at the pool. There’s a quick kick off but no meltdown and it passes quickly. Success! Look at me parenting!

All in all it was a huge success sounds ridiculous to some that I am celebrating a trip to the pool but honestly some of our trips out would make your toes curl.

Back home and out on his bike with Tarly for some night swinging at the park.

Surely he’ll sleep? He’s never stopped today. Tomorrow morning will be awful. First day back for Reilly is that bad his dad has taken the day off to help. It’s not that he hates school he just wants to be with me. This past 2 weeks you’ll be lucky if there’s been a day where Reilly hasn’t been attached to my cheek. He loves the holidays, loves staying in his pjs and watching films. He’s rekindled his love for Charlie and Lola which I’m very happy about and we’ve watched hundreds of episodes. Tomorrow is going to be tough for the little man. I expect uniform down the toilet at first opportunity.

Myself and Shane will be going out for lunch as we have spent zero time together over the Christmas holidays and a bit of almost grown up conversation is much needed.

Good Luck to all those with a fight on their hands in the morning. Cheers to the first uninterrupted cuppa x

Conversation frustration 

​Reilly said cheese tonight. He’s said it before and I love it when he does as it lets a tiny chink of light through on what lies ahead. He went on to babble for about 15 minutes and for some reason tonight it made me really emotional.  

I cannot express how huge my desire to have a conversation with my boy is.  


He tries so hard. It makes me so fucking angry the frustration he faces daily to make himself heard. Don’t get me wrong we manage most of the time I know what he wants as he is a brilliant communicator via other means but sometimes it overwhelms me that he’s 6 and we haven’t had a conversation.  

Imagine having none of the magic conversations about the run up to Christmas, I tell him regardless and talk to him as much if not more than Alex and Ellis, sometimes searching on his face for clues that he gets it. I think he does there’s no flies on Reilly and I think he knows exactly what’s going on but I can’t be sure because he can’t tell me. He points to Cars3 track in Argos book and then at Santa so I know he’s made that link which is great and I’m now working on Reindeers and carrots.  Might not sound like a big deal this is just an example but apply to any part of his life. How was school today Reilly? Nope  I’ll just check what his teacher has written in his diary or I just don’t know. 

As a Parent it’s your job to ‘get it’. I need to know what’s up so I can fix it, help him, make him happy. Sometimes I just can’t figure it out and that pisses me off royally. 

In my poem called I’m Jealous which I wrote a while back I didn’t hide my jealousy of others in fact I was practically green with envy. I still am at some things and sometimes when my head is straight I know people might be jealous that they don’t have a Reilly. He’s awesome and I long for the day that we might talk, that day might never come I’m prepared for that, I think.