Different things matter to different people, share those issues that matter most to you and awareness raise to get other people interested and aware!!
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
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!!
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!!
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!!).
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!!
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!!
The Situation –
My first piece of requested advice (yay!) has been from a respite carer based in America who has been caring for a 7 year old Autistic lad for four months. Her problem is that while out and about the little boy has very openly and matter of factly pointed out the differences of other people, it hasn’t mattered on the situation, colour, ability, disability, walking aids, wheelchairs, you name it as soon as a difference is noted the little boy feels that he has to comment on it. With it not being visible that the little boy himself has Autism the carer has faced verbal assaults, disgusted and judgemental comments and facial expressions, being judged and labelled because she “hasn’t brought up her son properly”. The family have tried talking to the little boy about how he’s making others feel by doing it, he doesn’t understand or remember this and continues to do it.
Personally I’ve never come across this situation, well, the judgemental people towards my parenting and looks I have but it’s always stemmed from public meltdowns or overly loud screaming etc. it’s never been because of comments about others. So any advice that someone may be able to offer would be greatly received!!
My Suggestion –
The way that I would gear Theo up to acceptance of others, if he wasn’t obsessed with the program already, would be to let him watch “Something Special”. The program is shown on a BBC channel called Cbeebies, which is aimed at children with development delays. They include the use of Makaton signing (for visual learners), show clips of children with various disabilities and difficulties, cover situations that can seem terrifying to children like the doctors, dentists, hairdressers etc. Lots of the program is directed to children through song which helps to keep their interest too. I hope that you’re able to view the video but if you’re not able too try searching http://www.youtube.com to see if there is any that are viewable out of the UK (Damned licensing laws!). If you are finding these clips available to view there are loads of them on there, plenty of viewing if the little boy will tolerate it!!
Failing that perhaps your SALT could suggest visual books that would be appropriate?
I genuinely believe that the more common and normal it is that children with or without ASD see people with differences the more that differences are accepted! I hope this helps and I hope that other people come forwards with their suggestions!