Preparing for April

Leading into Autism Acceptance Month can be pretty exhausting. What kinds of people are we going to encounter this year? Are the anti-vaxxers going to be lashing out? How many will silence our voic…

Source: Preparing for April

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#MakeRoomForMatthew – Online Petition

Right!  This has been in the media quite often recently but the more I read about other families in the UK having such similar situations with Medical & Health care and support services that are involved with vulnerable people!!  I am so proud of Matthew’s Mum and Dad, Isabelle and Robin Garnett having the confidence to voice the treatment and malpractice (my opinion) giving literally thousands of others the inspiration to share theirs.  You would think that in 2016 the people making care, support and life decisions for people with a disability they’d have learned by now that equality and respect would be the best empowerment offered!

I have created a little ditty just here for folks to think about while they’re reading Isabelle’s petition if they’ve not got a great understanding of how ASD can impact on a person.  Let me know if it helps with the understanding, I haven’t ever met Matthew so I’ve highlighted in the story the things from [Boy Wonder’s] perspective that would trigger his anxieties, meltdowns and self harm however used a thought process of a young person with no mental health issues.

PLEASE NOTE: This story has been created entirely to explain the impact of surroundings on young people.  It has never been a true story that I am aware of.

There’s a new neighbour just moved into your street, after getting to know their immediate neighbours who’re the Neighbourhood Watch founders for your locality they’ve absolutely entrusted him with his life experiences that he’s shared, the amazing career that he’s had working with vulnerable people enabling them to live their lives empowered and equal.
Mr and Mrs Neighbourhood Watch send their 13 year old round to welcome him to the area and hear about his experiences in his job because there was a related Work Experience position that they fancied applying for because it could lead them to their future respectable career that they’ve wanted ever since being a child.
13 year old is found in a neighbour’s house where there is guns, syringes, broken glass dangerously strewn all over the place with the TV showing the movie “Hostel” terrifying him with his inappropriate surroundings magnifying the experience. He’s no idea how to express to this man that he doesn’t want to hear about his career because of his intimidating lifestyle and surroundings so stays silent sat edge of the sofa while the unknown person carries on with what he was doing absolutely ignoring the young person’s presence.
A few hours later Mr & Mrs Neighbourhood Watch pop round just making sure that their offspring isn’t imposing on the lovely man’s good nature. Going into the abode they realise their belief in this person was absolutely too good to be true and try to hurry their son to go home but the man starts to open up again sharing his amazing career stories about hope and awareness and equality once more blocking their path through to their son and unabling their son to be with them.
  • How a lad of 13 trusting his parents judgement being sent to a situation believing that it was going to be an empowering, enlightening, supportive, educating and future inspiring opportunity was very quickly turned into the most inappropriate, intimidating, disabling experience that reduced his self confidence and self worth.
  • He was going to gain knowledge and experience to help with decision about his future and instead being thrown into an inappropriate, dangerous environment where he didn’t know the adult in charge then couldn’t find the confidence to voice that he’d rather leave.
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Now click [HERE – PETITION WILL OPEN IN ANOTHER TAB] read this poor family’s experience with mental health care in Great Britain. Before you sign have a think about these points then make a decision on if you wish to share a comment. Whatever you do however please do keep this the more signatures the greater awareness has been raised about the mental health care professionals, standards, treatment and discrimination!

THINKING POINTS ABOUT MATTHEW’S ORDEAL

  • This 15 year old lad has Autism with impacts on both his own feelings and emotions as well as his ability to understand other people’s.
  • He’s never been forced to stay away from his family and his familiar comforting home environment before with a ward full of hospital smells, noises, sick children, if it was anything like the PICU ward Ickle Bubbs was on kids constantly in pain, sometimes actually dieing on the ward etc.
  • Again … keep in mind the Autism!
  • The 6 week stay would’ve had a negative enough impact mentally on any child but to turn into a 6 month stay with no progress whatsoever in a medical sense will also be creating negativity in the people around him building mistrust in the medical providers that are involved in his life.

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#AwarenessRaising – #Caregiving

Ok so first and foremost if you haven’t already read Welcome to my madness! I would give it a quick read so that you have a general idea of my outlook at life and aims and goals for this blog!  Also The who’s who in Scorgie life! informs you of the main people that’ll be featured in my posts if you feel you’re needing reminded!

Alas – Back to the subject intended!

Caregivers are often some of the most selfless, hard working, inspirational human beings I’ve ever met.  I don’t even put myself into the same category as some of the beings I’ve met in my life as they’ve quite simply got wings that us mere humans haven’t the ability to see!

Below is a list of scenarios that some Caregivers can feel as if they’re escalating into because of their time commitments and antisocial hours that they’re depended on for their caregiving role. This is why their friends, family and wider support network need to be aware of the things to look out for too!

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Do any of the statements feel familiar?

For me personally since I became a Caregiver I’ve became a master of deception convincing everyone that I was coping fantastically, it wasn’t until I got with Stu seven years ago that I had no other option than to start sharing the responsibility.  As soon as he’d built a bond and become a trusted approachable member of my children’s lives, right reason or none he wouldn’t allow me to do it alone anymore.  I was able to shower and not worry about how long I was taken because it was “lads time”.

As much as this new presence was an absolute breath of fresh air I was so guilt stricken because the support he was giving me was everything I’d pushed away from myself all the time I’d been a mother.  They were my responsibility … he shouldn’t be taking the rough side of the children he was adoring as much as they adored him … it’d been my sole responsibility for that long I couldn’t stand  someone seeing the horrible side of our roller coaster ride never mind stepping in and supporting the bairns that were having their moment.

Once I’d got past my whole self indulged guilt trip of the support I took a step back, looking at the situation from one a “MY time” moment and opened my eyes to the fact that no longer was Boy Wonder insisting that I was delivering all his care needs, he’d accepted another person (more to the shock a male other than Wee Man).  I also realised that my caregiving and motherly role in their lives had been improved tenfold because no one was feeling left out, everyone had their needs met and tiredness was never an issue because even if Boy Wonder was only asleep 2-4 hours a night – there was now a shift system in place for those long difficult times!  The entire household was amazingly uplifted and happier!

A magical bond was created between them to the point of Boy Wonder deciding that “Abe” (he only ever heard me call Stuart “Babe” so used that as his title) a few years ago however he decided that he was no longer “Abe”- He’d been promoted to “Dad” and that’s how he’s known him ever since.  Their bond is amazing – if you knew Boy Wonder back then you’d never have expected him to trust another man to come into his life never mind the fact to give him that title!

Over the past 7 years of Stu being part of our lives I’ve seldom recognised most of the questionnaire.  Sometimes things will creep up on me don’t get me wrong, however Stu’s right back there giving me the support I need and picking me back up again.  One thing that never catches me anymore is guilt for sharing the Caregiving position – sometimes I wonder how the hell I coped so long on my own without him.  I’ve no idea what I’d do without him now.

No one needs to be in a position where their caregiving responsibilities is making them isolated and detached from their former selves before the Caregiving role, all they have to be is open and honest with their friends, family and support network that they need say an hour to themselves in a week?  In most cases the people around you are just waiting to be asked they don’t want you thinking that they’re being rude or diminishing the amazing support that you provide by being offered!

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I don’t like the word “Respite”  I define it as “MY time”, I spend it as I chose, with whom I chose and there’s no guilt anymore.  My night off means it’s MY time.  If I offend anyone by spending it by myself or in a way that doesn’t involve them tough!  It’s MY time!

I get my time to have my PS4 fix on Call Of Duty, sometimes I get the bonus of having a Karaoke night off where I get to spend time with the Karaoke Family, sometimes I even get to go for a meal with my gorgeous fiancee that probably deserves 5 times as much treat time as I do haha!  At bedtimes when the house is quiet and I’ve a chance to settle down with the TV to myself I can engulf myself with my American Crime series or lose myself in a fantastic read.

All of these little experiences that I now have to tap into are something that you all could – Even if you’re just putting off washing a few dishes until morning when you’re going to be washing the morning dishes anyway – what’s wrong with just grabbing the washing time to find an interest online that you could tap into.

MY CAREGIVERS CHALLENGE!! 

If you’re able to setup your “MY time” and put it to good use share it with us … here are some examples that could be done easily or depending on your support may even be able to accomplish a very challenging bucket list!

  • Find music video’s from your youth on HTTP://www.youtube.com that you’d forgotten had existed!
  • Find an online community that has shared common interests where as and when you can fit in a little bit of “MY time” at any point of the day or night you can get back to the conversation at your ease
  • Express yourself in a blog – have you a hidden creative side?  For example Jeyna Grace – Indie Author has put her creativity into my next reading section with her vast amount of Fantasy Themed stories. I just happened to have found her this morning!
  • Take the dog for a walk, or borrow a dog to walk, or just walk!
  • Get out to a pub quiz one a week/fortnight/month?
  • Create a “MY time” bucket list that you’re wanting to challenge yourself to achieve within a specific time and enlist different friends, family etc for each challenge so that you’re getting social time with each person!

Your possibilities are endless and you only have to speak out to get a little support – which is in no way anything that you should feel guilty or ashamed of!  Even superhumans need rest and relaxation from time to time – why shouldn’t you be?

Is there anything that I could help with?  Would you like to share a post about how caregiving makes you feel?  Would you like to share a post about how you like to spend your “MY time”?  Do you want to know how to approach a caregiver to offer support? Do you have any idea’s for “MY time” spending yourself?

Share them below and help inspire people!!

Remember Sharing Is Caring!

The who’s who in Scorgie life!

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Well this is pretty much the “Red Carpet” treatment for the most common to feature in my posts!  My life had so many challenges because my “Script Writer” in life didn’t want me to ever get bored! Haha!

  • Scorgie 1 – “Wee Man” – No matter what age milestone (last month was his 18th… I’m positive I blinked and several years ran away!), and no matter how many feet taller he is than me he’ll always be my Wee Man.  As a sproglet he was diagnosed with diet controlled ADHD and dyslexia.  Thankfully he grew out of his ADHD when the teenage hormones took over!

  • Scorgie 2 – “Boy Wonder” – The one that has two volume settings … Loud and Louder!  At two and a half he was diagnosed with Autism which turned out to be Non Verbal!  He’s being monitored for ADHD and there’s deffo OCD in there along with self harm!  Him being slower with his development is what I’m clutching at to remain youthful – Let’s face it at 35 it’s a bit late to be making drastic life changes like that!!

  • My CDH Angel – “Ickle Bubbs” – This little miracle decided to show face 15 weeks into gestation when I was being tested for polycystic ovaries! Good Friday 2007 I was informed that I was 15 weeks pregnant however the baby was showing that it had a Congenital Diaphragmatic Hernia that was possible to overcome however there was a 60/40 chance that it’d end in loss.  A few years prior I was told that my body was rejecting the female chromosomes and I would never successfully be able to carry a little girl after going through several miscarriages however … Faith was part of our lives for 8 amazing weeks before the final decision was made … she was simply too perfect for this horrible world!  If you’d like to know more about her life story now her memorial page is [HERE] [OPENS IN NEW TAB], I’ll be doing a more up to date post all about her at some point soon if you’d rather wait!  She frighteningly would’ve been 9 this year!

  • The Geordie – Stu – Well i’ve known him longer than my Wee Man’s been alive however after years of male stubbornness – insisting that “I will be with you one day – You’ll be my princess” – a period where we’d no contact because of my hectic lifestyle and lack of time online – He found me again on facebook a little while after reactivating my account! Believe it or not we’ve now been together almost 7 years now and he’s not as annoying as he used to pretend to be haha!

  • The Mini Mackem – Little Legs – Oh how i thought his Dad was going to actually shed tears when he came in announcing he was a Sunderland supporter!  My little Step-Son-To-Be when we eventually start wedding planning again! With the loss of my daughter I thought I’d had all the trouble that was coming to me at the time – Her full 18 years worth within those 8 weeks that she was here lol!  However as it turned out Little Legs was born just 3 months before her!  So I was given once more the terrible 2’s, traumatic 3’s and so on … Haha .. Loved every minute of it!  Recently he received a diagnosis of Autism too, Stu was obviously destined to be with me to be prepared for life with Autism with his little fella!!

Welcome to my madness!

Firstly I would like to say hello to some of the people who’ll recognise me from PurrrdyPanda’s days – I hope you are all doing fantastic and that life is treating you just as well!!  To yourselves it is Welcome back to my madness!

As for the rest of you lucky people thank you so much for joining my roller coaster of a life, there are without doubt the highest of highs and lowest of lows – infact if I was able to reproduce the experience as the form of a roller coaster without a doubt I would genuinely only expect real thrill seekers on there!!

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Alas this is the point where I like to point out that asked about the glass above, I would simply just go fill it up to the top … there’s no point in wasting time thinking about the question if you can change the outcome for the better!

This is actually part of the reason of me coming back to blogging  too.  Ever since my son got his diagnosis at two and a half of having Autism I have never met so many judgemental, hypocritical, 50 faced people in my life …  lets face it life is a learning curve and they’ve taught me a life lesson … They’ve benefited me being in my life and I thank them for it.  However because I like to concentrate on the people in my life who inspire, support and care about me I waste no time on the false ones anymore.  Instead I try to treat other people by treating them with respect, showing support and loyalty, being non judgemental and approachable but honest, I expect in return from my friends the same treatment as they’re role models to my children and they need to be surrounded by people they trust, respect and can turn to if they’re needing someone other than Mum and Dad.

My blog goals

  •  Informing
  • Empowering
  • Encouraging
  • Inspiring
  • Highlighting
  • Supporting
  • Socially Inclusive & Active

Sharing is Caring!

  1. It’s possible that your one little click could be your good deed for the day!
  2. That one button press could humanise someone that’s been feeling alone because they didn’t know anyone else in that situation.  
  3. It could inspire someone to reach out for support they need or want to offer!

    The possibilities of the click are massive – yet it’s such a little amount of effort!

I’ll be discussing topics that I have personally experienced from Autism to Child Loss, Bullying to Online Gaming and everything in between!  Also anything that’s requested!  I am giving my honest and heartfelt blogs on any subject really, all you have to do is get in touch and ask!  If you feel that you’d like to cover a subject that I have raised giving your perspective please again get it touch and I’d love to have you as a Featured Friend!  If you would like to talk about a subject related to something that I’ve covered in more depth again, please let me know!

So that’s me, as you’ll all have guessed from the chat  I could talk for Scotland, Well actually I’d be just as comfortable with doing it for Europe as long as I have a translator that can keep up haha!!!  So my request to you all is to comment back if you have any comments or opinions towards that would be fantastic!  It’ll be fun getting to know you all!!  Have a great night!!

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