So, by now you know that Tricksy has Autism. I often explain it as him still being a toddler. He needs constant watching like one, that's for sure! Being around Tricksy is a real eye opener, for a lot of people. I also noticed that I stopped being invited places after people met him and many don't seem to fully understand what a day in his world is like. So I'll give you a bit of a run through of what its like for us. One of my favourite sayings? "if you've met one child with autism? Then you've met ONE child with Autism:
Eating:
Because of his selective eating we give him a vege juice, orange juice mix to try to get his vitamins up. He has french fries for breakfast,which means everyday at roughly 9am we have to march out to the car and drive to our nearest burger king. This is the only fries he will eat. Many have asked if maybe we'd thought about making home cooked fries and the answer? Yes, we've tried. But he wont eat them.
He generally has chips for lunch with some juice through the day.I also add an antihistimine to this, cos he's like his father: Allergic to dust and pollen.
For dinner we travel 16km's East to his grandparents house because there he eats his one real meal: Rice with chicken mushroom sauce. I use the term 'sauce' loosely, because its steamed mushroom and chicken and the sauce is the water that is left over. We have tried countless times to get him to eat this in our home and even had his grandmother over to make it and feed him for a while but to no avail. So, until he stops eating this he will go there most days. he has begun to show interest in other foods,which is wonderful! Various fruits, vegetables and once? He grabbed a cheeseburger off me to put in his mouth! He may not have eaten any but we gotta start somewhere.
Another thing about the eating is it means that if we ever need to get medication into him? Forget about it. It's not going to happen no matter how much cajoling we do. We can't just shove it in his mouth and hold it closed until he swallows because he is likely to throw up. His only option is orange flavoured medicines that I hope to god I can hide in his juice or suppositories.
Routine:
People ask if routine is a biggie for him and the answer is well, yes and no. If we keep to routine? Everything seems to go better and this is because its predictable for him. He understands that everyday he does that and this and then the other stuff. If, for whatever reason, the routine changes he tends to be a bit finnicky, is liable to throw alot of tantrums and is likely to not be compliant. He sticks to his routine as closely as he can! So, as long as the big things are the same everyday (School, his grandmother, chippies and bed) then he's good.
Tantrums:
The thing with Autistic tantrums is they vary in size and can happen at any moment, if we're not careful. Routine changes, being told no or wait, not being able to play with a certain toy in a way he wants can cause tantrums. His ability to understand his frustration is very limited and so his frustration results in tantrums or even worse, meltdowns. A meltdown, as many parents know, are all encompassing tantrums that can take forever to calm. For him the come in waves and often we can see him struggling to catch a hold of control, but he can't. The only thing we can do is sit him in a comfortable place and let him work through it. We often can't leave him though as he will bite, hit or scratch himself to try to alleviate the frustration. He has also hit myself and Boyfriend many, many times.
Going out:
When we take him places we often get sideways glances that I try very hard to ignore. He shows baby like excitement and with abandon as well. If he's frustrated in public he will literally just throw himself on the floor. Going food shopping, to the pools, the park; these are all places that need vigilance and planning on our part. Mostly I try not to take him shopping, but sometimes I need to. I watch him like a hawke at playgrounds, not because I'm scared he'll hurt himself (because that's unlikely), but because I'm scared he'll hurt another child. He doesn't know how to swim, so constant watching there is a must.
You learn over time what to avoid, and even what routes when driving to avoid! Some shops are money pits because they stock his favourite things: Trains, cars and lego!
Communication:
Hi non-verbal communication didn't take long to pick up, but then I'm trained in the art of observation as part of my degree. I can see that it would be much more difficult for others to pick up. We know when it's time to leave because of an impending quarrel, when its time to get him his juice, when he wants to go outside. These things we picked up. Even his verbal skills are low and he has a short list of words he uses, some aren't even words, but we have figured out what they mean to him.
Schooling:
He goes to a special needs school and at the stage he's at it seems unlikely that he'll be main streamed. But then, you never know!
Affection:
Most people assume that Tricksy must not know how to show affection or be attached in anyway to people. Well, for us its not like that. He often will walk to one of his main carers and give them a hug, will sit on their lap when he needs comfort. He even understands that something is wrong when I get blue (which I sometimes do). As far as attachments go he is very attached to his grandmother, his father and now me. I used to feel for Boyfriend because I heard how he wouldn't be able to go to the bathroom without Tricksy having a meltdown. He used to have to have either his Grandmother or Father in his line of sight. Well, I can say now that I know what that's like! Since I've become one of the people in his life that cares for him everyday there have been times when I've ducked out and he's gone ballistic. It's upsetting when it happens but it can't be helped.
Well, I guess thats some of what it's like. I can't tell you what its like for him but someone once sent me a reading that said:
Imagine you wake up in a strange country. You can't understand or speak the language, you don't recognise any of the food and the 'beings' seem to have rituals and routines that you just can't seem to get your mind around. You taste foods, but your mouth feels strange. Bright lights upset your eyes, loud noises give you bad headaches. The beings touching you feels like an insect on your skin and the beings around you seem to want something from you but you cant for the life of you figure out what it is! If only someone spoke your language, you could connect!'I liked this reading because for the first time I could picture what it might be like for him. And the thing is? We may never know what its like for him.
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