Taxi Driver

For most parents their kids will go to their local school, certainly where we live its an approximately 3 minute walk from my house.  Biggest nightmare is that it’s raining or that you have to carry a scooter.

For us it’s really stressful.  Reilly gets transport to school so has a driver and an escort.  We’ve had a few over the last few years and the most recent escort we are really comfortable with. Reilly likes him which is huge.

When your child is non verbal or doesn’t communicate trust is an enormous issue. I’ve written before about leaving no stone unturned while investigating drivers and escorts before meeting Reilly.  Checking social media, local online news etc (I’m not kidding).  Ive probably snooped on their cousins boss at one point looking for anything that could set alarm bells ringing.

There is currently no legal requirement for the escorts (or drivers) to know anything about autism.  It is a recommendation but not a requirement.  This doesn’t sit well.  A meltdown can be terrifying for the child but also the person responsible, surely to have some awareness of what may cause one and how to help during one would be beneficial for all parties?  So many potential triggers that you wouldn’t dream of in a taxi – air fresheners, radio, other kids, seating positions etc.

This morning I heard the words I have been dreading. “Hi Chris just to let you know tomorrow is my last shift”.

Shit, I’m gutted.  I’m so stressed.  Reilly may love the next person, he may hate them.  Who are they?  I have no idea and its terrifying.

I created this petition recently and would be really grateful if you could sign it and share it.  Having taxi companies taking part in an awareness session as part of the terms of a councils tender would be incredible.

 

 

 

 

 

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Safety First

Today I had the absolute pleasure of being able to help Reilly’s amazing school. I’d had a conversation with them before Christmas about how difficult it is when our kids are ill, communication being the main factor. When Reilly is feeling unwell he doesn’t tend to point to where he hurts, he doesn’t talk; he lashes out at me. His way of showing me he’s not happy. As a parent your main priority is to mend and make better – this is no easy task with Reilly. Then there’s the going to the doctors, the treatment, new equipment he’s never seen before, lotions, potions and medicine etc. It all needs explaining, he needs to be prepped.

We decided that new PECS cards to keep at home and some social stories would work perfectly to ease frustrations on both sides.

So today I organised for my good friend and amazing first aid trainer Chris Bull from FIRST AID NORTH EAST to come along to the school and teach some of us parents what to do when there’s an accident or emergency. As many of you know I’ve run a charity with my sister in law for the last 6 years and Chris has done numerous training sessions for us. He again gave his time for free to help today and I’m incredibly grateful. I learned a lot too. Each parent had the chance to focus on their main concern and ask lots of questions too.

It went so well we will be working with Chris further to provide future sessions of the same style.

** I’ll be posting a link to children’s first aid kits with these PECS cards attached in the next couple of days. Another great contact at JAX FIRST AID can provide them at a discounted rate.

“My first aid kit consisted of a liquorice allsorts tin from 1994 with 5 plasters some out of date savlon and some drawing pins. Not anymore!!”

12 years

12 years ago after the birth of my second son I had a breakdown. It was the worst experience of my life. I had severe post natal depression and peri-natal OCD. Peri-natal OCD is possibly the cruelest form of a mental health problem I’ve come across. This isn’t lining baby bottles up or being tidy. This is trying to make a bottle and convince yourself that you haven’t filled it with salt (obvs haven’t but you check, you check again, one more check, you throw away – just in case, you start again). It’s exhausting. You have this teeny human to care for and all you can think about is the harm that they could come to (obsession) and spend your life making sure that doesn’t happen (compulsions).

This is not a combination I would wish upon anyone, not my worst enemy. I couldn’t travel alone on a bus into Newcastle, couldn’t nip to the shops or take my oldest to school. On the rare occasions I did venture outside I wouldn’t/couldn’t speak to anyone. It was the darkest place I’ve ever been to. I ended up moving home with my parents, only they knew the true extent to how bad I actually was, taking sleeping tablets 6 nights a week for some respite from my inner turmoil while anti depressants settles themselves in as my new sidekicks (still with me, couldn’t live without them). I could no longer work in finance and found myself with no job for the first time in my life. I felt I was a failure and the world would be a better place without me.

If you’d said to me then Christine hang on in there. You are going to make a difference. You’ll play a part in saving lives through the charity. You’ll produce theatre shows and a film. I’d have christened you barmier than I was. But look what’s happened! Granted I still take meds – no shame in that, I practise mindfulness and really try to keep on top of my mental health.

When I talk about being driven you have no idea how much I’m driven. I see these opportunities as second chances. I see them as my way to cover up some of the cracks in my own walls. Being driven fuelled with anxiety on most days is bloody hard. I hate anxiety, sometimes I want to get the kids off to school and then hide but I don’t I sometimes need some encouragement to keep it moving and I do my absolute best.

The Life of Reilly is cathartic for me. I love writing when I get the chance. I love to share our experiences and feel I’ve evolved over the last 3 years of writing. I hadn’t a clue when I wrote my first blog that it would be viewed all over the world. I get thanks from countries I’ve never heard of because they feel like they aren’t the only ones ballsing this parenting lark. I get it wrong. We all do but I do my best.

I will do everything in my power to ensure that the stage play travels. I will work my nuts off to make this film. Wherever possible it will include autistic people. Acting, crew, runners. Everything in my power to make it happen. There are important issues to raise and millions to educate but I need your help to do it.

If you can help with any aspect of the film be it donation of time, sponsorship, product placement, locations, expertise then please shout. We have some great fundraisers coming your way including a Midsummer Nights Dream Ball!!

Moral to this one is no matter how shitty you feel there is hope on the horizon. Keep your chin up, seek help, take the meds, speak to the counsellors just do what you’ve got to do when times are blue. Never be afraid to speak up.

Great things could be just around the corner xx

https://www.crowdfunder.co.uk/the-life-of-reilly-film

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

 

 

 

 

 

 

 

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