2019 Good Riddance – A Dad’s blog.

It’s been quite some time since my last blog, so long I can’t remember the last time I wrote one to be honest; quite a lot has happened in Reilly’s life, development and this has changed the dynamics of the house somewhat and had a profound effect on us all as a family.

The first 6 months of the year seemed to pass without too much incident in the grand scheme of things from Reilly’s point of view (I think), our boy rolled with his routine, he settled into his Monday to Friday routine of going in his school transport without too much issue, developed academically very well, he’s by all accounts a helpful, keen student even taking it on himself to collect the class register and participate in running 1 mile a day with few of his class mates and his teacher.

After school in the lighter nights Reilly is keen on playing out in the street, going swimming, going to Air box trampoline park, the Cinema (we tried numerous times but it’s just too overwhelming for him and he is off before the movie starts), Weetslade country park; Fridays are different we always get the bus, same X8, has to be a double decker so he can sit up stairs and get a good vantage point on his journey, straight off the bus at the Haymarket and into Greggs for a sprinkled donought and a bottle of Dr Pepper light then through M and S up the glass lift and depending on his mood its Fenwick’s toy department or HMV or both.

After shopping it’s like clockwork off to Subway for a Bacon sandwich and pop sitting in the front window watching the Buses pulling out of the station.

So good so far right?

During this period of relative stability as I have mentioned in previous posts I have wrote ordinary life goes on, bills have to be paid, work commitments have to be fulfilled, cars will still break down; even in times of really unsettled behaviours unfortunately the same applies.

The first 6 months of 2019 were tough for many reasons personally, like most in modern life we are spinning numerous plates and modern life is stressful enough and parents often neglect self-care; too busy earning money to pay the dreaded bills, keep the car on the road, the roof over the head, rushing between kids activities, probably sounds very familiar to most I would imagine.

I will try to explain the gradual decline that spiralled out of control that with self-care I could of I am sure handled it better, the problem is if you’re in a lifestyle that doesn’t include regular self-care you like me probably won’t see the signs of what is coming and you dig in and think it will pass.

Towards the end of 2018 we lost a dear friend, a really kind soul Glenn who suffered like myself with mental health issues; in January we lost another dear friend Eddie to cancer after a short period of diagnosis, both fine young men were far younger than myself and should have had the world at their feet and deserved to live full and happy lives.

At this point I am seriously considering morality, Reilly’s complexities potentially may or may not need to rely on a support network as he moves into adulthood; we have little in way of support as parents get older, health declines and he’s an energetic bundle as he should be as a young lad. The first thoughts of what happens if it’s me next creep into my head, who will look after him? Who can he rely on? At this point it’s a daily thought and I try to rationalise with myself that’s not going to happen everything will be ok…..

A short period of time later I lost another friend, Gavin the word character could have been invented for him; Gavin was slightly older and like myself a father and like Glenn and Eddie he should have had years life and happiness ahead of him.

Watching the pain, anguish and struggle of bereaved parents is unbearable; I know what they are going through the fights they face and as kind as peoples intentions are bar odd chinks of normality nothing stops the living hell of how final it is. I know because I am a bereaved parent.

The rationalising with myself is now becoming more frequent and my worries are becoming more and more real in my own mind….

Still trying to hold myself together the crushing news comes in a phone call my friend Anthony is in hospital, diagnosis pancreatic cancer; kind, funny, principled, slightly younger than myself and also a father.

Again the first thoughts are this is shit, just wrong, a very fit young man, regular half marathon runner, he should have his life, a long happy life. The battle in my head is now all consuming in fact its lost, well and truly lost at this point. I make an appointment to see my GP and continue as best as I can to function at work and as a parent.

Getting back to Reilly, at this time my head is a mess, I spend time with him and all I can think of is what will become of him, will he need support, will he have a career and who will care for him, protect him and support him? The day before I was at the GP’s I attended a concert at his school and all I could do was cry, not out of pride but fear, real fear for his future.

I left that concert and went home with stomach cramps, never slept and rang in sick the next morning, went to the GP’s unloaded on him and was as honest as I could be, top tip to any men if you don’t be honest you can’t get the correct help. I will be forever grateful to the GP and my friends who recognised the signs and offered unconditional help and support.

The severity of the cramps had been on and off for periods of months and In my lost battle in my thoughts I was terminally ill, the GP took what seemed like a dozen samples and reassured me it was stress related and proscribed a new course of anti-depressants, diazepam and signed me off work for 3 weeks.  Work were supportive thankfully, the next few weeks existed of wondering around the house and waiting for the kids to come in to have a sense of purpose.

Fast forward 2 weeks and results day at the GPs, I was physically sick before I went I was that convinced I was seriously ill. The GP got straight to the point and advised me I had neglected my own care in short, was suffering with stress/depression related illness and I was type 2 diabetic undiagnosed for considerable time. I have never been so relieved in my life as a result I have had to alter my lifestyle, take the medication, slowly build up my mental health and taking enjoyment out of my life and being a parent. I returned to work after 6 weeks and have nothing but praise for the way I was supported and treated since, it’s easy sometimes to forget who helped you when you needed it, but remember you should and repay them and stay loyal to them in the future.

Anthony was a dear friend and comrade, whether it was that daft message, a phone call, quick pint, a music session or a day out to the football there was never a dull moment.  His battle and outlook on life will stay with me forever, so brave and dignified.

My outlook on the future is still very much a case of uncertainty, I still question my morality and the what ifs creep in but I can shut them out and replace them with positive thoughts and behaviours; the truth is even neurotypical kid’s parents will have worries of their kids futures but unfortunately it’s not a level playing field with a child or a young adult with ASD is it?

For any readers who aren’t familiar with me I am very opposed to the current government and their savage cuts on social care, the NHS, education and the welfare state; I will openly challenge people in person or on any platform available. I make no apologies and stand by position, an example is £0 yes £0 extra funding for SEN schools from 2023, the current lot don’t want to educate my child never mind care for him if god forbid the what ifs ever became reality.

So when you think here he goes again banging on about Labour or Socialism or the likes you now have a deeper understanding of what makes me and my wife tick, I like you want an equal, fair and accepting society for my kid as you do yours; I don’t expect special treatment just a level playing field it’s not too much to ask. What isn’t ok is 1000’s of kids and families struggling out of education, unsupported, confused and suicidal in a world they don’t understand, parents struggling relying on charities and kindness as the magic money tree doesn’t stretch to our kids.

Recent political goings on don’t fill me with long term confidence so we have options to consider what is in our best interests as a family, for Reilly individually and what can we do to remove uncertainties and improve the outlook for families, ASD kids and as importantly young adults.

If we don’t take the lead who will? No one is my guess, bar our own community bubble of teachers, parents, families we are very much on our own in my opinion.

Ps. the second 6 months were an absolute disaster in terms of Reilly and his behaviours bless him but that’s another blog.

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

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

 

 

 

 

 

 

 

Mental

I must apologise for my lack of blog posts recently I have had to take some time to step back and breathe after the incredible response to my husband’s social media rant.  If you missed it you can catch it here …….

The fallout from his spectacular f-bomb laden rant has been tremendously positive. Heartbreaking to hear so many stories of exclusion from all over the world, promising to hear people admit they acknowledge a lack of empathy and their need to change.

That post was not meant to go viral.

When it did,  although I embraced it and ran with turning it into a positive from a negative,  in reality it actually terrified me. I am and have been for the last 15 years a sufferer of depression, anxiety and OCD and to be thrust under the spotlight like we were was extremely daunting.  Parenting criticised, by idiots granted but still hurtful nonetheless.  Trolled, not as much as I imagined but they still came out from under their trip trap bridges to throw the odd insult.  This behaviour is difficult to manage by most.  I however am not most.  It has given me many more sleepless nights if that is even possible.  I have analysed every post and comment, dissected it and gone back to look at it a bit more.  Thats what anxiety does.  It’s relentless. I stopped reading at your son is a window licker.  The positive posts were amazing and we’ve been thanked a million times over for having the voice to say things that others haven’t been able to say.

When I was asked recently if I would like to appear on the radio show Mentally Sound on Spice FM I jumped at it. Another F”#k you to my anxiety that I will not be kept down, I can do these things.  I love talking about mental health and it really frustrates me that people still feel uncomfortable talking about it.  I understand why – stigma, stereotypes, etc have a lot to answer for.  After all it’s not often you see mental health painted with a lovely picture it’s often accompanied by a horror story in the media.  I have to speak for Reilly while he has no voice or finds new ways to project it and I will do the best that I can to advocate for him.  I see posts on social media all the time about parents worrying for their kids, thats what we do as parents, worry but multiply that by a million and you may be getting close to my struggle.

The lads Ricky & Steve made me extremely welcome and it’s great to sit and talk to others who are unafraid to bare their souls on the subject.  It affects all of us in one way or another.

Link to Mentally Sound Podcast I’m first guest on about 15 mins in.

Speaking of mental health recently there was a debate in the Houses of Commons about autism and suicide attended by approximately 10 MP’s.  Now a recent study shows that autistic people are 9 times more likely to kill themselves than NT’s and will die on average 16 years earlier.  A handful of MP’s to debate this isn’t good enough.  I’ve been on to my MP to find out why she wasn’t there.  You should do the same. You can find your MP and how to contact them here.   Mental health services are an absolute shambles, people who want to help can’t and people who can help are stretched to the limit.  Waiting lists are too long and people are suffering horrifically.  It has to change.

Top points from talking at Mentally Sound were:

Let “talk more, judge less” be your mantra and we can’t go far wrong. Talking helps.

Use the #askingautistics hashtag on twitter.  As I said in the interview I am an expert at being Reilly’s mam thats where my expertise ends.  Get solid advice from actually autistic people. There is no better guidance whether you are a parent, a fellow autistic person, an employer, a friend.  I talked for 2 hours with an autistic adult last week and he blew my mind with his concept of how Reilly’s thought process works.

ps want to help us tell it how it really is?  Then please donate to our crowdfunder if you can for The Life of Reilly pilot with offline donations we are headed for 3k.  This is our chance to educate a wider audience.  The play has done exceptionally well and returns to the Northern Stage on March 16th.   Tickets for The Life of Reilly available, it will sell out.

https://www.crowdfunder.co.uk/the-life-of-reilly-film-pilot-1

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My Sons not Rainman

I came across this book while browsing twitter one night while lying in bed worrying about the future as you do, well I do.  I sometimes lie for hours scrolling through #autistic #autism #meltdowns making myself feel better with other peoples frustrations or jubilations.

I liked the title immediately.  If you have an autistic child you will be familiar with the fact that a lot of people expect your child to have a remarkable magic talent.  “What’s his thing?” “I bet he’s good with numbers” are the common ones.

Not all autistic people are Savant’s. Savant’s are people who have incredible abilities usually falling into a few different categories to name a few:

Musical abilities – being able to playback perfectly a piece of music after hearing it only once.

Artistic abilities – Stephen Wiltshire a prime example his ability to remember skylines and reproduce them in drawings is breathtaking.

Calendar Calculation – being able to produce the day of a week a date falls on thousands of years away.

Memory – Reilly has an awesome memory and shocked us all when he started to google  bus registration numbers and we realised they were actual buses he had been on or seen weeks even months before – but I don’t think he’s Raymond Babbitt. If he is I’ll meet you at Aspers!

The book written by comedian John Williams really struck a chord with me.  I related to everything he said but its so funny too.  My favourite part is his disability top trumps and that SEN parents can be arseholes too.  I don’t want to spoil it for you.  But I am guilty as charged – If your child had 4 hours sleep mine had 3.  I also lol’d at the school shoes and too short tracksuit bottoms I see this week in, week out.

It’s honest, it’s sad and its thoroughly enjoyable.  ‘The Boy’ as he is loving referred to has an amazing relationship with his father despite the many challenges they face over relationships, schools, behaviour, disability etc.

You can click on the link below for more information.  Myself and my Mam read this book on holiday and now my husband is half way through and loving it and sometimes not loving the stark similarities in our lives.  I thoroughly recommend it.

A gut feeling

Like most parents of autistic children I read, a lot. I read other parents blogs, scientific studies, general books on autism, self help books, how to use the toilet books, special needs rights books, communication books. A lot of books.

There is one thing that I keep seeing – in forums, studies, blogs, even a TedTalk and that’s about how prolific the link between the gut and the brain is. I decided I would delve deeper after I watched the documentary The Truth about Sleep, in which there was a lot of talk about pre and pro biotics.  If you don’t know probiotics are good bacteria that lives in our gut, prebiotics is a fibre that we can’t digest but allows our probiotics to flourish and fight the bad ones.  If you do take time to read more on the subject you will see the gut/brain/autism study where the mice became more social, less anxious and displayed ‘less autistic behaviours’.  There are parents actually doing fecal transplants to change gut microbes in, I shit you not, crapsules.  I’ll leave that there, it makes me feel a bit sick. 

In the documentary it talked about people who get less than 5 hours sleep per night, that’s me and has been for as long as I can remember and they’ve found not getting enough sleep can cause changes to our gut bacteria.  We have trillions of micro organisms living inside our intestines that keep our bodies running along. When it’s thrown out of kilter there is mounting evidence that it links to IBS, allergies, obesity, diabetes, heart conditions, brain function and neurodegenerative diseases. It will also make you crave sugar PMT style.

A recent study showed that getting less sleep changes the levels of specific strains of bacteria. The amount of certain types of bacteria decreased by almost 50 percent ― and that was after only two nights of not enough shut eye.

I’m no science teacher so I’ll try getting to the point.  

My beady, black tired eyes lit up like fireworks when I read that pre and probiotics can be beneficial when targeting anxiety, depression and OCD.  My threesome. So off to Holland and Barrett I went today like a medical encyclopaedia looking for a new chapter. 

I am the guinea pig. I took my first capsule tonight and will monitor daily if it makes a difference. I will be honest you can be assured. Could this help sort out the restless, anxious, biscuit craving, foggy brained obsessive fatty that I’ve become?

 Maybe not but let’s give it a shot if it helps with my anxiety, sleep, sugar cravings, stomach pains and allergies it may become a permanent fixture in this house.   I’ll report back on this in a week 😀🤞🏼.  I’m off to sleep. 

Ps not on commission, not selling anything. 

Mental threesome 

It’s mental health awareness week so thought I’d do a post. I’m pretty vocal when it comes to discussing mental health and I wish more were too. 

I have a threesome regularly – depression, anxiety and OCD. Depression and anxiety are of equal shittiness, OCD the king of the castle.  OCD is vile and it’s hard to explain.  I don’t spend time lining up things and making sure the house is tidy or washing my hands.  I do however get overwhelmed with ridiculous thoughts. Like a broken record. They are exhausting and it takes every ounce of energy to deal with it.  It’s like anxiety on steroids, the what ifs? Become amplified WHAT IF’S? Harder, better, faster, stronger as Kanye would say. 

Anxiety is an everyday occurrence. I’m not plagued 24/7 like some people but parts in everyday will be spent with pins and needles coursing through my limbs accompanied by a loud pulse, a foggy brain and an urge to get out of wherever I am.   It often greets me on waking like an elephant sat on my legs.  When anxiety is high OCD is worse, OCD in turns feeds anxiety; see my hamster wheel? I wish it would f@ck off.

Depression – if you know me you know my story it has ups, it has downs and it has some wayyyy downs and my depression I believe stems from my past, my genetics and the two beauts above.  They go hand in hand in hand And it’s hard sometimes to function “normally” I should add lots of my friends and lots of my family suffer from depression, anxiety, some even from OCD too. It’s beginning to feel like the norm.

We have to be brave enough to talk about it though.  I talked about my OCD and found 5 people close to me who were suffering too, in silence, not anymore. 

ASD is usually accompanied by depression, anxiety and often OCD in some form.  To think of Reilly, or any of my kids ever suffering like I have in the past breaks my heart in two but I’m armed.  Armed with knowledge, empathy, experience and understanding.

The thing that works best for me is distraction, I keep busy.  It’s a well known fact that anyone suffering from bouts of depression feel worthless at some point.  My charity work not only helps others but it helps me, there is a method to my chaotic life madness – it actually helps me too.  

I’m mindful, I listen to podcasts about anxiety and learn from others, I read up on alternative therapies, I take meds, I’ve had counselling. 

I’m defo 1 in 4 have been for longer than I care to mention.  You wouldn’t guess it 90% of the time as I’m a great pretender, we all are. With mental health problems rising rapidly in kids we need them to understand mental health issues,  how can we do that if we suffer in silence? 

#mentalhealthawarenessweek #itsoknottobeok 

Dark clouds gather

You ever have one of those days where you wake up and you can barely get out the bedroom because your anxiety is up with the larks? That was me this morning.

I hate those days, I’m partial to them I can’t lie.  Days when you are happy your phone is broken  and that you have no plans because getting out of your pyjamas takes more effort than what you’ve got.

I hate anxious depressed days such a massive waste of time and energy spent ruminating over everything. Everything being the important stuff like 10 reasons why it is absolutely impossible for me to die as no one can take care of the Things like I can but also worrying about utter drivel. I hate that the most for example the tiles on the outer edge are missing in the hallway Reilly’s escort will think we live in squalor, WTF but yes that was a genuine worry of the day.  I knew I couldn’t watch the documentary about the 16 year old non verbal boy today as I may still be crying now that needs to be watched on a less emotional day.

I’ve spent the day trying keep as busy as possible. My self preservation involves being busy with minimal human contact and watching old America’s next top models that I’ve missed. So here I am at almost 1am feeling completely normal and wanting to hang onto that peaceful feeling so putting off sleep a teeny bit longer.

When Reilly came back from school he wanted to go out, I really really didn’t want to but I put my trainers on and figured some fresh air might do me some good so we went to the park and for something to eat.  It does always brighten me up if I can get past the doorstep.  In this mood I’m prone to a bit of people hating, can’t help it for example I hated a mam shouting at her little one for walking too slow, I shouldn’t judge she may have needed the toilet or was catching a bus or whatever but I did and hated her for it anyway.

My temples were pounding, my left arm was pins and needles and my legs like lead weights but I did the 2 hours out and I did feel better for it.  The good thing is I can say to Shane what an utterly shit day, I felt like crying and have been really anxious and he gets it, priceless.

The black dog barks at my door a lot and I do try and keep him on a tight leash.  Medication, mindfulness, etc help too. I’m 44 in a few weeks time and have felt like this for about 20 years off and on some times worse than others following life events.  Caring for Reilly ups the game on the anxiety stakes that’s for sure.

I get so pissed off, I accomplish a lot but what would the Christine minus anxiety, depression and OCD be capable of?  It’s exhausting but as they say without darkness we’d never see the stars.

What’s your method for dealing with the dark days?

New day tomorrow hoping for a good one x

Sleep Deprivation and Tossers

I had a driving lesson this morning.  I haven’t had one for a couple of weeks and feared the worst for the general public.   Today though I was more switched on than usual, I wasn’t as panicky and all round had a much better lesson.  How can this be?  I’m consistantly nervous and Driving Miss Daisy but today was better and there was only one explanation.  I’d had a full nights sleep.  I fell asleep with Reilly at 20.45 woke up at 23.45 thinking that was my lot and that it was 6am.  Imagine my excitement when  I realised, Reilly allowing, I could actually rack up an incredible extra 7 hours!! That’s exactly what I did.

Sleep deprivation is the worst.  Physically I can take being tired but mentally is a different story.  What a horrible, moaning, ratty cow I become when I get less than my (sometimes if I’m lucky) 5 hours.  Some days I look at my social media and switch it back off because I literally hate everyone, I put TV on and switch that off because I hate everyone.  I lose approximately 70% of my vocabulary and recently actually questioned how I had spelt the word ‘the’ because it just didn’t look right.  It’s depressing, literally. It aggravates anxiety and whips up a vile vicious circle of over thinking, insomnia and exhaustion.

I read some jolly old snippets about sleep deprivation today that filled me with horror, I’ll share a few for you:

  • Five hours or less sleep nearly doubled the risk of death in particular cardiovascular disease in one study. Like I needed to read that one given our family history.
  • Chronic sleep loss puts you at risk of heart disease, heart attack, heart failure, irregular heartbeat, high blood pressure, stroke and diabetes.  Whopppeeee NOT!
  • Makes you look like Gollum (FACT).

The fact that my post entitled Grim about dying and leaving Reilly is one of my biggest fears this doesn’t help.

I get to have all this and do North East Hearts with Goals, Alphabetically Autistic and keep the house ticking over (kind of) which makes me tired just writing it.

It changes me as a person, my whole character.  I have recently while out shopping in sleep deprived state actually wanted to hit a woman with a 4 pack of beans for looking (for more than 5 seconds) at Reilly kicking off and straddling the big bit of the trolley like a school gym horse.  I settled for bumping her with said trolley.

gymnasitcs-eqiupment
Tadaaaaaa!

It’s just no good. I’m not an angry person.  I’m laid back, I hate confrontation, I like peace.  I want to throw all of that out of the window and go on the rampage in my sleep deprived states.  At any given moment someone could be one judgey tut from a decking.

You can help me though by supporting our bid to make a film with to educate the general public.  Not just any film though, a clever, witty film with input from autistic people. Help them stop me from wanting to pummel tins, chickens, eggs off them, help me to stop telling people to fuck off for their blatant ignorance to the situation in front of them.  Help them to be less judgemental.

#prayforIan (driving instructor)

UPDATE!!  I passed my driving test thanks to Ian and film looks like it might actually happen!! How exciting.  Support our crowdfunder project if you can.  

The Anxiety Society 


Before Reilly was born I was already a part of the anxiety society. That club that no one asks to join and you can’t terminate the membership, a bit like those gyms you join on January the 2nd and continue to pay for the rest of your days.

 I’ve always had spells of anxiety from around 18 but it was never a constant, when I went on holiday I’d want to come home, I’d get that jelly legged feeling and feel dizzy until I was either a) drunk or b) came home, that kind of thing.

I lost my brother aged 32 in 2003 to a heart condition which devastated us as a family, it was out of the blue, sudden and excruciating. Still is.

Thing 2

After thing 2 was born in 2006 I suffered post natal depression (PND) of epic proportions. If there had been space I would have gone into a unit but there wasn’t so myself and Things 1 & 2 moved back to my parents house where I could start medication, take sleeping tablets and actually rest.  I have no doubts without my parents and some great help from my neighbours and a couple of friends I would not have coped alone and I’m forever thankful for their help to this day. There were contributing factors to the PND. Thing 2 had a  condition called pyloric stenosis which meant he was sick constantly not just baby sick but projectile sometimes 10-15 times a day. I couldn’t leave the house without numerous sets of clothing and no one was taking me seriously and I was palmed off as an overprotective mother.  When he was 2 weeks old I received the news that an old friend had horrifically murdered his partner, my god-daughter, her brother and uncle. This man had been in my home, bought Christmas presents for Thing 1 and I was devastated and disgusted that he’d been near my child. This is no great secret revalation I have done newspaper articles to help others desperately looking for answers around PND in the past.

6 weeks later Thing 2 had surgery on Christmas Eve and I spent Christmas Day sat in the cafe at the RVI eating chips and gravy while wondering how close the nearest exit was, whether someone could remove the elephant crushing my chest and why me? I crashed spectacularly.

That’s the short version. Not surprising I’ve struggled I’ve had my share of shitty cards dealt but I’ll not bore you with the rest.  There’s other things but these are the contributing factors as far as I am concerned. I’ve managed to handle my depression and anxiety pretty well in recent years. For a long time it ruled me, I wouldn’t use public transport alone, go anywhere with friends and gave up my job but a chance meeting with an old school friend who later became my husband in 2009 was my turning point. He has had tragedy in his life too but that’s for him to talk about.IMG_0003

We supported each other , we got each other. I remember being terrified on my wedding day that I’d have a massive panic attack saying my vows and ruin the whole day. I didn’t though it was perfect. I’m still prone to catastrophising for example book a holiday see flashes of plane crashes, lose Reilly for 3 seconds = he’s been abducted then I ruminate about it and end up in a right tizzy, building a cycle of fear and anxiety.

Reilly came along in 2011, 7lb 7.5 oz of gorgeousness and it was Love at first sight. I was terrified right through my pregnancy of PND returning. It didn’t, don’t get me wrong the anxiety was still there but I think that’s my life long buddy and he doesn’t seem to be going anywhere so I crack on and deal best I can. Autism came along though quite unexpectantly, it wasn’t anything I had given any consideration and I wasn’t prepared for its effects.

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Reilly

I suppose the point to this post is that the ‘system’ the parents and children have to go through to have their child diagnosed and get them the right help is nothing short of appalling, I cannot speak for all but I speak for many. I was already capable of slipping into dark places I didn’t need a push in that direction. I have never experienced lows like the ones we faced. It can cause problems with your marriage, work, friends and family. My beautiful Thing 2 did not want to sleep at home as Reilly was so wild during the night and could scream none stop for 4 hours which was causing him anxiety at just 8 years old. Our family unit was slipping apart and it’s still not fully fixed, it’s better but it’s still got cracks.  

Being part of the anxiety society I knew I had to become incredibly strong, official meetings sometimes alone and making decisions were something I cried away from but now it was impossible. I still to this day clock the exits and windows in case I need to get out, fleeing that hot, dizzy unstable feeling that comes with a panic attack. I’ve never had to leave meeting but the fear that I will is always there.

During our experience in finding Reilly a school I don’t know how many occasions we were told ‘you must play the game’ to get the help needed. A game where only the loudest, assertive parents get anywhere quickly. I dread to think how many mild-mannered people are being palmed off to this day. Children not in the right learning environments because there’s no provision available resulting in more meltdowns, more stress at home and more families struggling.  I already felt like I was failing Reilly unable to calm his meltdowns, get him to sleep etc without now failing his future and a right to an education that is right for him. We fought, we read guides on the special needs education system and became armed with knowledge. Having a child with any disability is stressful enough without trying to navigate a minefield of sometimes a load misinformation. Too many tears have been spilled over ‘the system’ not just by us, by many.

I still take antidepressants I think I always will, I can’t polish a turd here; it’s not the best but I attend anxiety workshops when I can and I practice mindfulness. I run an extremely successful charity North East Hearts with Goals with my sister in law set up in memory of my brother. Our charity has impacted on 2 gentleman’s lives being saved which is an amazing achievement and an incredible legacy. I’ve given tv and radio interviews and a presentation in front of hundreds. I never dreamed any of this would be possible. I’ve learned to handle it better, it’s never gone away but I can’t sit back and wait for it to disappear because chances are it won’t.

I still check in at my anxiety society every single day, it’s like a second home! Typical day consists of :

  • Will things 2 resent thing 3 for taking so much of my time away?
  • Who will look after them if we are in an accident?
  • Is his transport driver an (insert horror thought here)
  • Will he speak?
  • Will he live on his own?
  • Why won’t he eat anything but chicken nuggets and ice cream?

And so on ….

To negotiate the special needs maze positivity is crucial, I hate negativity and there’s no place for it in my life. Don’t get me wrong we’re still lost but I think we’re headed in the right direction.  My kids are amazing and all 3 of them and I’m sure will achieve whatever it is they desire and we will endeavor to help every step of the way. I would love to see more help and a fairer, faster system for these families from identification and diagnosis right through to living as independent adults.

Autism acceptance is key. It’s here, it’s not going anywhere it’s just a different way of thinking. Remember when you see that frazzled parent sobbing with a child starfished probably with no pants on that chances are they’ve not slept for a year and are under extreme pressure in every aspect of their life.

Be kind as always.

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