#Autism – #Halloween, #GuyFawkes and the problems they bring!

Published November 22, 2013 by mandzmagee

Oh the issues in our house around this time of the year!!

Theo doesn’t like dressing up, doesn’t like the door being knocked on making the dog’s bark, doesn’t like seeing other people dressed up so that he doesn’t know who they are so Halloween certainly is a challenging time for the poor little soul.  It’s even worse when less than a week later we celebrate Guy Fawkes and his escapades by lighting fireworks that light up the sky and make noises when it’s supposed to be Theo’s down time.

I’m absolutely at my wick’s end around bonfire night (Guy Fawkes) because Theo’s anxiety levels are so high they’re lunar and he’s absolutely terrified.  The only way he can settle is by going to bed listening to the radio on his ear defenders and closing his eyes so tightly it’s uncomfortable to settle.  The sensory overload of visual and audible unpredictability for hours and hours of the night makes him so scared within his own safe space.

The curtain’s have to be closed that he can’t see any little piece of window pane, he has to be under a blanket incase he needs to hide his face if there’s too many flashes at once, his ear defenders have to play the radio … just incase they don’t block out all the noise!  I can’t be too far away from him, infact he almost insists on constant body contact with me, this year he cried every and I mean EVERY time Dad left the house.  Unfortunately when he’s had an upset like this it can take weeks … And I mean weeks … All this began 5th November and he’s still having troubles from the night …  He still doesn’t feel safe in his home 😦

It’s absolutely heart wrenching to watch him so upset knowing that there’s absolutely nothing that we’re able to do to make it all better.  I genuinely wish that organised events away from our house were all that was available to the people celebrating and that they were as far away from Theo’s safe space so that he was oblivious to what was going on.

Here’s a little look at him trying to get settled for the night …

https://www.dropbox.com/sc/qs7vfvaii6w8lxj/0HqCQ-vp5h

#AutismAwareness – A Very Inspiring Find

Published November 8, 2013 by mandzmagee

Having a scroll down my Facebook friend updates I found myself absolutely inspired by a post that a fantastic UK based Autism Awareness group shared.  Personally I think the author is brilliant in wording her Autism life experience into a comparison that anyone would be able to understand wholeheartedly! I simply had to share with you’s all!! If you’re on Facebook like the group … Their posts are always inspiring!!  Links given at the bottom of the post.

The post went as follows …

Before You Complain

Before you complain about your child waking up too early….
Imagine if your child didn’t sleep at all because their brain and body couldn’t connect correctly…or if they woke up for 3 hours in the middle of the night just because

Before you complain that your child is ignoring you or not listening…
Imagine if your child didn’t acknowledge your presence, didn’t even realize you were there, didn’t respond to their own name or even a loud BANG

Before you complain that your child constantly wants you to play and won’t play by themselves…
Imagine if your child NEVER wanted to play with you or freaked out if you attempted to play with them

Before you complain that your child won’t stop talking….
Imagine if your child couldn’t talk or if your 3+ year old couldn’t even call you mama

Before you complain that your child’s insurance has a deductible or high copay…
Imagine if your child’s insurance had a high deductible and high copays…AND doesn’t even cover what your child needs, even after paying the deductibles and copays

Before you complain about your child throwing a tantrum because they can’t get their way….
Imagine if that tantrum was so extreme that the child was screaming(like they were being tortured) for hours, punching the walls, hitting themselves or you, banging their head on the floor, etc….and even if you give them what they wanted, they are so deep in that meltdown, that it doesn’t help. Or worse, if there’s no apparent reason for the meltdown.

Before you complain that your child had a potty accident….
Imagine if your 10+ year old was still in diapers (that you have to change) because their body doesn’t work right or their body is so undersensitive that they can’t feel when they have to go.

Before you complain that the schools don’t give your child all they need….
Imagine if your child needed special schooling and 20+ hours of therapy per week and wasn’t able to get any of it

Before you complain that your child won’t eat their peas…
Imagine if there were only 4 specific foods that your child would eat(not necessarily because they’re picky) and nothing else.

Before you complain that your child is whining….
Imagine if you couldn’t understand what they were whining about.

Before you complain that your child is too emotional….
Imagine if your child didn’t show any emotion…not even happiness

Before you complain that your child is always catching colds….
Imagine if your child has been to the ER so many times you can even guesstimate how many…you’re on a first name basis with the nurses…you have no clue how many times you’ve answered the exact same questions, sometimes to the same person

Before you complain that you don’t get enough alone time or enough breaks…..
Imagine all of the above….and even less alone time and less breaks because there are only a couple people that can handle your child or know enough about your child to make you feel confident leaving them

Before you complain….
Imagine what other some parents deal with on a daily basis…and never complain or ask for anything for themselves. All they do is pray that their child will get the help they need…and that others might be a little more sensitive.

Wrote by Nikki Hazzard Bumgardner

Links – Will open in another page (if it behaves!)

Autism Storms and Rainbows UK – http://www.facebook.com/pages/Autism-Storms-and-Rainbows/152663228214371

Direct link to the post – http://www.facebook.com/permalink.php?story_fbid=260237034123656&id=152663228214371

Hello my friends … It’s been a while!!

Published November 7, 2013 by mandzmagee

After a lonnnnnnnng time away I figured that I wanted to blog again … so I’m back friends!  (Also of course … Friends to be!)

As it’s been literally months since I last blogged here’s an update on our life!!  I won’t go into detail here however as I’ll probably blog about most of it along the way!!  

  • Ali’s into his final year at school … College next year!!
  • Theo’s started his Secondary School at a school just as amazing as his primary school!!
  • Faith’s 6th birthday and anniversary has just passed
  • Stu and I are beginning to plan our wedding!!  (Nervous muchly!!)
  • We’ve just passed an incredibly anxiety heightening and petrifying Hallowe’en and Guy Fawkes for Theo
  • Alex is beginning to prove that he has actually walked this earth before with how phenomenally good he’s doing at his English Literature!
  • I’m nearly finished my Xmas shopping!!  (Getting earlier and earlier each year yay!) 

So as you can see there’s been high’s n lows along the way however as I said I’ll go into detail soon 😀  

When You’ve Met One Person With #Autism

Published January 16, 2013 by mandzmagee

Over the past few weeks I’ve spent time with people who’ve wanted to learn more about ASD.  It’s been interesting hearing what their perceptions about it has been and where they learn their perceptions from.  After finding out how they base all their knowledge on films such as “Rain Man” and “Mercury Rising” and the such likes, I begin to tell them about Theo’s daily routines and how life is for him.

I try to express as strongly as possible that “When you’ve met one person with Autism, You’ve met ONE person with Autism”.

I could talk forever and a day about Theo, about how life is different for his siblings and our family.  I could talk forever and a day about how if his routine is messed up it can take from hours to days to try and settle him back into his normality depending on how upset and anxious this change has made him.  I could talk about how moving from Dumfries to Washington has made such a dramatic impact on his development that the things I was told he’d “never achieve” have been accomplished and how he’s surpassed his believers expectations never mind the disbelievers.

I always come back to the same line however “When you’ve met Theo, You’ve only met Theo”.

It doesn’t matter if you know a million and one children with ASD, you still know another million and one more that have ASD affect their lives in different ways to the first lot!

I’ve found myself suggesting groups and blogs to people via facebook and I came across one group which I found perfect to reference people too, people with ASD, parents, carers, family members have all posted up a picture of “The hidden disability” and a little bio of the person with ASD’s likes and dislikes.  It shows how such a small label is different in such a vast variety of ways.  It’s also very very humbling to read.  The page is available here … https://www.facebook.com/AutismShines?ref=ts&fref=ts

I absolutely encourage you to help your knowledge of Autism grow and develop by looking at the page!!

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!

Our Happy New Year! – #Autism

Published January 9, 2013 by mandzmagee

Yup slightly late I know … I’ve been a busy bunny over the festive period however!!

The Christmas Holidays were certainly filled with surprises with our family!!  Theo especially, Christmas is normally something that goes completely over his head, he hates the mess of the decorations and just wants to clean them up … that obsession stayed … he still wants to “Tidy up”.  This Christmas however, he’s actually been quite excited about Santa coming!!  Don’t get me wrong, he is still terrified of the big cuddly jolly man, he did actually count down the days of Santa coming!!  As you can see in the following video …

Theo Counting Down Until Santa Was Coming! – Video

I genuinely can’t put into words how much it’s actually meant to all of the family how much his understanding of Christmas has meant to us, lets just say that over the moon doesn’t even cover it!!

IMAG0014

Theo In The Christmas Spirit

All three of the lads had a magical time on Christmas Day, Ali spent the day with us and Stu’s family then headed off up to Scotland early evening so that he could go and have another Christmas Day with his Dad’s side of the family (two Christmas dinners in two days the lucky lil thing!!).  Then Alex and Theo were engrossed in their new things, Theo hid himself away in his bedroom wanting to just obsessed over his new DVD player and new DVD’s.  Alex on the other hand had me reading all his new stories, playing with his new lego and other super hero toys.  Again to say he was happy is a massive understatement that cannot be put into words!!

Grandma Julie got Theo a Talking Tom cuddly cat, (you may have seen Talking Tom free applications on your smart phones … They’re fantastic for getting the kids to interact with!!  There’s a multitude of characters to choose from but if you look for Talking Tom you’ll be linked straight too them!!).  Theo has “Eeoo’s Om Caat” talking away to him constantly now and has started repeating more words and phrases finding it hilarious to have a talking cat.  He is now however getting rather frustrated that our cat wont talk back to him haha!!  Very cute too watch!!

Theo enjoying himself at his Grandparents on Christmas day!! – Video

I’ve had a couple of nights out with my inlaw family (an absolute luxury to me as I hardly ever go out at nights!), Christmas Eve (birthday celebration as my birthday is Christmas Day).  A meal for a cousin’s birthday which ended up in us staying out til the nightclub closed and then not leaving (Stu’s) Mam’s until silly o’clock in the morning!!  On New Years Day Mother-in-law and I went to our local for what was going to be a few drinks in the afternoon and well, we didn’t leave the local until closing time!!  It was an absolutely fantastic time because so many people I hadn’t seen since giving my job up at the bar were in and I got the chance to have a catch up with them.  (Thankfully I (think I) remember it all!!).

My Birthday Cake from Stu,

My Birthday Cake from Stu, and the boys!

Stu and I also had a chance to catch up with friends at home that we hadn’t seen or spent quality time with for such a long time.  It had been far too long and will definitely be remedied, we’re definitely not leaving it so long again!!

Yesterday Alisdair and Theo went back to school and I think it was a relief to both of them to be fair.  Deffo was Theo, he was such a happy little boy when he came in from his school Taxi.  I think it took a hell of a lot out of him though, by 6pm he took himself off to bed and we didn’t hear him for long!!  Thankfully over the holidays he found out what it was to stay in bed and just relax!!  So hopefully that’ll be him for at least another hour going by holiday routine, what’s the bet school puts him back into his previous routine lol.  So far so good however, it’s 6:15am and he’s still asleep, before the holidays it was a 4 – 5am rise!  *keeping my fingers and toes crossed that Stu and I can fall back into a routine where we’re not getting up at pre-Christmas times still for long if it does last!!*

The only thing that has let the beginning of the New Year down is the break down in the central heating and the boiler however it’s all good now so we’re back on the right tracks!!

Theo in his school play Sheppard's costume.  He certainly shined bright like a diamond on stage!

Theo in his school play Sheppard’s costume. He certainly shined bright like a diamond on stage!

I hope you’ve all had a magical Christmas, the most fabulous of New Years and I hope that 2013 brings you health, wealth and happiness!!

Thanks again for reading!!

Happy-New-Year-2013-191

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