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!!
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!
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 …
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!!
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!!
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, 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!
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!!