Look at her …

You ever catch people looking at you like you’re an extra from The Walking Dead. I have a few times in the last week. Im sure I used to look half decent a decade ago.

Some days I swear I have no idea how i’ll make it to bed time. In a bid to TRY and help myself I chronicled my day. Im looking for ways to kick in some self care. I need it.

Not for your sympathy, for your understanding.  Understanding of why I haven’t replied to that text, opened that email or made it out for that meal.

6.20am alarm goes off.  If Reilly has had more than four hours sleep this is considered a win. I snooze it until 7.00am when I slip my phone which is playing Mickeys Twice upon a Christmas under his pillow.  If you just wake him you’re asking for bother, gentley gently catchy monkey as the saying goes.

I wake Ellis up. I go downstairs for a wee, can’t be done upstairs if he hears me he will stand IN the toilet and flush it and scream for at least 20 minutes.  I’d rather wee in the garden than face that. (I don’t I use the downstairs loo). I can’t flush it, another trap.

I make 2 slices of toast, cut off the crusts, spread with nutella and cut into 8 equal pieces and join them back up into squares. I make a cup of tea sneak a gulp then hide it.

I wake Ellis again. I put Reilly’s uniform on the bannister then cover it with a towel so he doesn’t see it when he goes for a wee.

I turn the volume louder on my phone and he sits up to watch it lured by his toast like a bisto kid.  I see to Ellis and make sure he’s set for the day, he hides his breakfast and wee’s exactly like I do bless him.

7.25am and Reilly struts back from the bathroom like King of the North, he’s been first, he wins, little does he know. He lines up his cars to match an exact scene from Cars 3. This is the moment. I have half an hour before his taxi cones – I’m going in. I produce his uniform.

He squeals and hides under the covers but with some coaxing and some distraction I have his right sock in place by 7.35. Always the right sock. God forbid left goes first. 7.40 I have 2 socks and a pair of trousers, right leg first, no buttons or zips, labels removed. 7.45 and I’m pleading for the T-shirt to stay on. As if by magic today it is, no flushing it or hiding it its on hurrah! 7.50 right shoe first, left shoe, coat on we are cooking on gas this morning.  Taxi comes I run for his bag come back and the shoes are back off and he’s ramming his coat behind the chair.

8am I wave him off down the street in his mini bus. He’s happy now he’s on there. I scrat about for change for Ellis, he’s missed his bus and I need the bank machine for his dinner money so on with my shoes, PJs still in place, not a brush through my hair or even a rogue finger wipe beneath my eyes to remove the remains of the day from yesterday, I’m a state but to be frank I don’t care.  I drop him at school and get home at 8.30.  I make another cup of tea, burn my toast, make some more and watch Bake Off.  My fave time of day.  I LOVE being in the house alone.

9.30 I try and catch up on charity stuff, I pick Kelly up, drop her in Lemington then drive to Low Fell to drop off a defibrillator cabinet.  I pick her back up and we work on the charity ball over dinner.  We also discuss The Life of Reilly play amd film with Alison.  1pm up to the office for more charity work. Home at 3.20pm just before the kids come home.

Prepare teas. No one eats the same or at the same time as its impossible.  Have I mentioned I’ve been having allergy testing? I’ve felt not right for a long time now, going back years with aching joints, having flares where I can’t fasten a shoelace or zip up my coat. I’ve found put in the last week I’m allergic to so many things that my eating, drinking, sleeping etc all has to change. I’m allergic to my mattress, bags for life, diet coke, milk, wheat, oats to name a few. This doesn’t fill me with joy and makes meal times harder –  like I need that. 1 week of no antihistamines while testing has ruined me and my skin.  They are even testing whether I’m allergic to myself!

I’ve forgotten my prescription at the chemist because my head is a sieve and ring Shane to collect.  Reilly types spar into my phone every 10 seconds so we nip out to get him his fave icecream. Double Corbet no sauce and a flake.  Last week when I went the machine wasn’t on. I could feel the colour draining from my face at the realisation, amazing what you can build yourself though under pressure.

Back home and while I get Ellis’s tea Reilly empties a bottle of water on the living room floor, takes the lids of the toilet cisterns and fills them with coins out my jar.

I eat my tea sat on the stairs so I’m close enough to hear him coming to catch me that I can leg it. We learn some new signs, I love Christmas being his fave at the min. He goes upstairs to watch planes, thank the lord 5 mins peace.  I make Shane’s tea for him coming home and hang out the washing my mam has very kindly put through.

I arrange some first aid training for the parents of Reilly’s school and work on some visuals to go with it.  I laugh til I cry at the photograph of myself and Kelly in the co-ops Christmas food mag. I’ve never looked so rotten holding a sweet mince pie that I can’t eat because I’m allergic.

Reilly’s spends the next hour draped around my neck going between trying to lick my nose and switching The Apprentice off at 30 second intervals. We deal with issues he won’t thank me for discussing in 10 years time but trust me its messy.

Its 8.30 and he’s bouncing on his bed which I’m now allergic to and I’m praying he’s going to sleep tonight. I’ve spoken at least 4 sentences to Shane since he came home and probably won’t be much more other than good night.

Homework, uniforms, washing, dishes, the normal stuff. The stuff I’d love to have to worry about but the stuff that pales into significance in this extraordinarily busy life.

So if I haven’t replied to your message I’m sorry. Actually I’m not – unless its a free spa day and I’ve missed it.

How was your day?

X

 

 

 

 

 

 

 

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Bethany’s Dad Gives the Rest of the Story

It Must Be Mum

Last week, I was given the privilege of sharing the turning point in Bethany’s story (see here).  Following a BBC exposé her dad was ‘allowed’ into a meeting about her and finally, experts on PDA were listened to.  A corner in her care was turned and she could finally see a way out of the seclusion cell that had been her ‘home’ for 21 months.

Shortly after the news of her diabolical treatment, Walsall Metropolitan Borough Council attempted to silence Bethany’s dad.  He is now able to share both the background to Bethany’s story, how she came to be in the Assessment and Treatment Unit and how he overcame the attempts to prevent him from telling her story.

The story, written by her dad, Jeremy, is below.

  • Follow him on Twitter twitter.com/@jeremyH9406697
  • Read Jeremy’s blog directly here.
  • The harrowing documentary about Bethany from Lucy Adams on Radio…

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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?

 

 

 

 

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

 

 

 

 

 

 

 

Caution may be sweaty bits

How’s the holidays for you? I’m going to be truthful this has been my hardest one. I’m exhausted and so is Reilly.

His sensory issues seem to be amplified tenfold. We’ve bought 2 pairs of ear defenders in the last week but he can still hear people coughing and spluttering on. No wonder everyone has the flu constantly the amount of people coughing. I didn’t even notice if before. It’s EVERYWHERE. Not even like it’s anything we can control.

For most part Reilly has spent the summer holidays in one of three pairs of pyjama bottoms. His choice I’ve tried every single day to get him out, bribe him almost to just come out for an hour. If he doesn’t want to what can I do. When my own anxiety is high last thing I want us to be around people, peopling is overwhelming when your anxious.

Today I wanted to get some school shoes, I’ve put it off of wanting to tackle it alone so me and Shane went into Town. Ear defenders on, Disney shopped like a boss. Burger King starts off grand then a cough, followed by another at the other side of the room, then the kid beside us, then his mother. At this point Reilly is under his table. For fecks sake, it’s rare anyone covers their mouth too. Reilly looks as though hes about to launch someone and the tone is set for the day so we abort mission.

Walking back to the car something happens that neither me or Shane saw or heard but it has Reilly distraught. Lying on the pavement, sobbing real tears. A nice gentleman came and asked if he could go get ‘her’ some tissues. I don’t correct him I’m just grateful for his thoughts and Reilly does look exceptionally pretty even when he’s covered in snot and tears.

He won’t walk. He won’t let Shane carry him so it’s piggy back from Mammy. Northumberland Street to The Strawberry is quite a distance with a Reilly clinging on I can tell you. He’s 7 I can do it now, just. What happens as he grows?

I quickly unwrap the Cars 3 CD we’ve just bought to try and cheer him up. No that gets smashed and the scratched, jumpy life could be a dream belts out at 100 decibels. Shane cant find his phone and I just sit there trying big to catch my breath. Reilly zones out as we drive and calms the more we are headed home. He’s currently hoovering and watching YouTube happy as Larry.

The purpose of this blog is to ask what the fuck lies in store for my boy? His struggle is real. Child mental health services are atrocious with service help being cancelled by the day. I’m absolutely terrified for Reilly and I have no answers or insight as to how things will work out for him.

3 weeks and counting

I am done in.  Physically and mentally.

I always get nervous on the run upto the summer holidays.  Reilly likes his routine and the holidays play absolute havoc with him as it does most kids.  My plan was to keep him busy.  Out and about, tire him out doing things he loves, less time in the house the better – this works really well when Reilly wants to be out but when he refuses to get out his pj’s it’s a new ball game.

Reillys is very controlling over me.  I cannot eat anything in front of him, if he hears me scraping plates he assumes I’ve eaten and tries to smash them.  There have been numerous plates and cups in my garden the last few weeks. I cannot drink – tea, pop, juice, milk doesn’t matter if I’m caught, this is no exaggeration there is at least an hours meltdown.  He gets that upset he shakes, cries and hurts himself.  I can’t do that to him so I go without.

I can’t go to the toilet, if I stand up to leave a room he will run ahead of me and stand at the toilet whether he needs the toilet or not to show he goes first. If he catches me middle of the night he wedges himself in there until he calms down usually around 30 minutes, I can protect him from most things but this one is impossible.

If I touch him, I love him sitting with me, if I stroke his arm he will scream and hit himself then place my hand back where it was as if to say I say it’s ok so now you can.

I can’t cough or sneeze this provokes an extreme reaction from Reilly and I spend most of my times praying I don’t do either.

i can’t answer the phone. Doesn’t sound like a biggy, trust me it is.  I’ve had more broken phones from answering calls I now just done bother.  Few understand when I say I will TRY and ring you back.

If I try and use my computer he unplugs it, iPad he throws it, phone tends to head down the toilet.  Hence my quietness of late.

If I try to talk to someone he’ll do his best to  disrupt it and will happily sit with his hand over my mouth for any amount of time.

When Reilly is at school or out and about these things are slightly less of an issue.  Currently my term time I eat tea before he comes home and have breakfast when he’s gone to school.  When we are velcroed 24/7 it all becomes a bit overwhelming.  Add to that an 11 year old who thinks he’s 17 moaning and groaning about FIFA points and first world problems and a 21 year old moving to York for Uni I’m a little stressed.

I feel broken hearted for him that such ordinary, everyday things give him so much terror and he can’t tell me why and I feel guilty that I come so close to losing my mind.

I think controlling is his way of managing his own anxiety, being an anxious girl myself I get it. As long as I sit on the sofa, and don’t eat, drink, fart, go for a wee, cough, sneeze or communicate  we are just dandy. Where he wants me no surprises just me and he.

This blog hasn’t been written to moan about my boy, it’s been written because sadly some folks just don’t get it. I would welcome any advice from actually autistic people or parents who have similar issues.  I don’t know how to help my boy or myself.

See you in 3 weeks 😬

 

 

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