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

 

 

 

 

 

 

 

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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.