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The Caregivers Check List and the “You Time” Challenge! – #Caregivers #Parents

Published January 9, 2013 by mandzmagee

Natural feelings and thoughts that can go through a carers head.

These thoughts are what can come from being a completely selfless human being, giving care to a friend or a loved one who is dependant on you and has entrusted you to serve their care duties.  If there is one care giver in this world that states that they haven’t had at least one of these thoughts pop into their heads, I’d be the first person to stand there and tell them that they’re lying.  I myself have felt low, jealous, constantly tired, so on and so forth because I overworked myself and didn’t give myself the chance to have a little bit of “Me Time”.

It wasn’t until I got with Stuart after having years of very limited support with Theo, I realised that I didn’t have to do everything myself, if I was feeling low he’d take Theo out and give me the chance to catch up on some sleep or have a shower or do the dishes or just do something where I didn’t have to be 100% alert as to what he was doing.  I felt guilty as sin that he was doing it and I had no option but to accept the fact that he was doing it because it was his way or no way.

Once I’d gotten over the whole self indulged guilt trip and realised that he was doing a fantastic thing and improving my care for Theo I finally accepted things as they were.  That little bit of time that he was giving me for what ever reason absolutely improved my relationship with Theo, it improved his bond with Theo (to the point where he now classes him as Dad), it also gave him the chance to help Ali, Theo and Alex a better relationship as they all seen that the way forwards was a family unit, not Mummy doing it all.  All round that man has worked wonders for our little family.

However … back to my point … Are you a caregiver that’s felt any of those feelings or had any of those thoughts?  Are you a friend of a caregiver (no matter what the situation is) that has noticed changes that could be fitted around any of those thoughts or feelings in their friend?  Make a difference for yourself and the fantastic work that you do … Have a little bit of “You Time!”.

Before your time of being a care giver, did you have a hobby you used to take part in that you gave up?  Did you have friends that you never get the time to speak too face to face any more?  Did you meditate?  Did you go swimming?  Did you do anything that you’re now always thinking that you’d love just half an hour to yourself to do?    Is there something new you’d like to be able to try?  Do you want to learn how to knit, embroider, cross stitch, play a musical instrument, is there a cupboard that needs cleaned out that would give you so much pleasure out of finally getting it done? … you probably get the point by now …  But this is your chance to grasp it!

If you are lucky enough to have someone that the person you care for and yourself trusts to take over the duties for half an hour, an hour, two hours … probably pushing it but … over night?!  Ask them!  They’ve probably been sitting on the edge of their seats wanting to offer to help out however not wanted to offend you or diminish the fantastic job that you’ve been doing so thought it best to wait until you asked them. (Or if you are that person that would love the opportunity speak to the Angel and offer!).  Lets face it, the worst that can happen is be told “No” … You’ll have been told worse in your life at one point or another!

If you haven’t got anyone that you can turn too, when the person you’re caring for is in bed at night, out at a meeting/school/playgroup or so on n so forth, Grant yourself a little piece of that time to indulge yourself in something for you!  All the other jobs and tasks and routines can be arranged around it, just give yourself that time!!

My challenge to all Caregivers 

Start with half an hour through out a week, even if it’s 5 mins one day, 10 another etc.  Just give yourself that time to get your mind away from the thoughts above and 100% back onto the job.

Think of it along the lines of … You’re not being selfish because you’re doing something for yourself … You are improving the perfection on the care because you have done something for yourself!

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#Autism – Guilt, Recognition and Acceptance!

Published October 7, 2012 by mandzmagee

I recently joined up to a UK based website about parenting which I am really enjoying being a member of, http://www.wrigglyrascals.com.  It’s mostly geared up to pregnant and new parents however I found myself wanting to join up to share my experiences, thoughts and advice with other parents and parents to be.  Don’t get me wrong, I’m not in the slightest claiming to be an expert at anything, some of the pages are very thought provoking and I’ve found I can share my experiences on the site to try and help other people.  I found a couple of active questions about children with developmental issues which inspired me to write about this.  Have a look at the site and if you feel you can contribute to it do so!!

Before Theo was diagnosed it was very very clear that something wasn’t right.  He was late at hitting all of his developmental stages that a “Normal” baby and toddler should be hitting.  As he was growing up he developed what other people seen as unnatural obsessions and when people were passing comments I started getting very concerned and went to the GP to raise both other peoples concerns and my own.

We got Theo’s diagnosis at the age of 2 and a half, we were very lucky to have got his diagnosis so quickly, I know many a family that have struggled for years to achieve a “label”.  The fact of the matter is however – without the “label” there’s no support and nothing for you to research to try and help your child!

I found myself being isolated because of Theo’s behaviour, family, friends and onlookers comments, facial expressions and body language made me want to hide him away from all these people who were judging both his behaviour and my parenting skills.

I questioned everything I’d done for my son, had I caused him to be like this?  Was there something I’d done/ate/said during his pregnancy that had impacted on this little being that I hadn’t realised at the time? The guilt I put myself through thinking that I’d caused this was unreal, then came his diagnosis and I invested all my (rather limited) spare time into researching what Autism was.

You have no idea how that little label “Classic Childhood Autism” gave such a sense of relief the more I researched it.  My first hurdle out of the way and conquered!  It wasn’t my fault, according to statistics I’d found autism effected 1/88 people – so why weren’t people more informed about it?  Why was there so many other parents and carers going through the same guilt process as I was?

I joined forum after forum online and spoke to so many other families that had been through similar and it was such a relief to know I wasn’t the only one to have gone through it.

I still found myself protecting both Theo, Ali and myself away from other peoples judgements.  I knew in my head that nothing had been caused by myself, I knew that Theo wasn’t badly behaved but I also knew that other people didn’t see what we were now aware of.  I also wasn’t as confident or out spoken at the time to correct other peoples judgement.  We went walks on paths that Theo wouldn’t come into contact with people who would look at him strangely, where they couldn’t sit and mumble to their friends about how spoilt he was to be throwing a tantrum like that to get his own way.  How he only self harmed to get his own way.

My turning point was a time (post diagnosis) where family and friends had took the boys and I to a local (supposedly) family orientated fast food chain – an alien situation to Theo because I didn’t risk him facing the criticism of others  – where naturally it was out of routine so he thought he’d voice his dislike and discomfort.  Theo was nonverbal so it wasn’t in words – by jeebus that boy could (and still can) scream!  After placing our order and requesting a drink for Theo asap to stop his screaming (sucking was a calming technique) the manageress came over and told us that if we couldn’t stop “The child wailing” we would have to leave the premises.  All of a sudden I found my voice and well she was given the whole “what gives you the right to discriminate against a child with a disability, couldn’t you have asked to help and got the drink we’d already requested to calm him with instead of trying to make us feel uncomfortable and unwelcome?  Within a week I had the company’s area manager in a meeting with me about discrimination towards disability and found myself insisting on discrimination training along with customer services with feedback from the facilitator so that I knew that it’d actually took place (which surprisingly I received!).

I’ve never looked back!

Being in the local Tesco’s getting things for tea and Theo having a melt down at the till (Theo was still self harming at this point), the older lady in the queue behind me snidely passed comments loudly to the lady that was with her drawing attention to everyone around us – again I couldn’t help myself “My dear you do realise that your discriminating against a child who is disabled?  He’s Autistic you see, he doesn’t have social skills or an understanding that this behaviour is frowned upon by people that are supposed to set an example to the younger generations that respect is a two way thing.  I would like to thank you for your comments given in a horrifying tone to a 5 year old also the animated faces that go along with that disgust which will probably horrify him for days to come.  He may have disrupted your perfect little life for a couple of minutes in the supermarket however you’ve disrupted his daily life through your actions probably for the next week or so.  Thanks again!”.  Applaud was given by the onlookers and they all passed judgement towards the cantankerous busybody that didn’t know what to say in reply.

Now a days however I have to say – I’m a lot more reserved.  When I see people looking at Theo in disgust or talking to someone about what they’re witnessing, I simply point out how he’s got a hidden disability and how they should educated themselves about Autism.  “Just Google autism and you’ll see” is a favourite line.

I no longer feel isolated, I no longer shy Theo away from situations, I strongly believe that knowledge is power and I use my power to inform people and spread Autism Awareness (without biting peoples heads off n spitting them back!).

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