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Autism v Autistic+ NEWS!

Yes, my brother has autism and yes I know the term to refer someone who autism is ‘autistic’. But I just see the term ‘Autistic’ as a form of labelling. Yes, I’ve come to terms with my brother having autism months after he was diagnosed but my point is, I don’t like it when he’s being referred to as ‘autistic’ because it gives the idea that he has to act a certain way because he can’t do certain things and I don’t like that. Each and every individual with or without autism is different. I’ve opened my eyes to the idea (after reading Ellen Notbohms book) that my brother is able to do anything and everything. I can’t NOT expect him to do it because he has autism. No. I have to at least try. If I give off the vibe that I don’t think he can do it, he WILL pick it up and he’ll think ‘why try I can’t do it?’. And he won’t do it.

I can recall an experience that was very.. hard and upsetting for me. I remember we were at this clinic and we were just with the paedetrician and her trainee. The paed (too long to write D:) wanted my brother to give the ball to me. The trainee suddenly interjects and says ‘But he’s autistic,’ This happened during the early months when he was diagnosed with autism. And it was really hard because she (AND SHES A TRAINEE, HOW DOES THAT WORK?!) expected him not to do it and it was hard for me because it made me think perhaps he can’t do it? But I tried to not let it get to me. AND YES HE CAN PASS THINGS TO ME WHEN HE WANTS OK? He can also do when you want him to- IF YOU HAVE THE PATIENCE!

You have to believe that your sibling will do it. Because then at a slow or steady or whatever pace that suits them, they will try. And if they try and they don’t succeed. They could always try again. But if they try and they DO succeed, then it will be the best feeling in the world. Though as Ellen Notbohm states, there’s a difference between can’t and won’t. Sure if you have that vibe of your sibling not being able to do it, then don’t expect them to do it because they’ll have the idea that they can’t do it. But if in a situation your sibling won’t do a certain thing, please don’t believe its because they CAN’T do it. It’s probably because a) they don’t know how but b) they just won’t do it- but that doesn’t mean they can’t, so keep pushing.

Yesterday, my older brother referred to my younger brother as autistic. I can’t parade around forcing people to refer to my brother as a child with autism because at the end of the day, they may not think or see things the same way I do. Sure it hurt that he referred to him as ‘autistic’ but after I explained to my brother, he kind of got it. It’s important for my family to not refer my brother as an autistic child but as a child with autism considering  we all live under one roof 🙂

So going a bit off the main topic, is this true? :O

http://www.dailymail.co.uk/health/article-2182550/Autism-A-pet-helps-children-autism-develop-social-skills.html

I may just look into this a bit more 🙂

Now for some news. I’m setting up a project called ‘Autism and The Teen Sibling’ which you can find more about here:

http://www.junction49.co.uk/idea/3102/autism_and_the_teen_sibling/

And follow here:

https://twitter.com/AutismAndTheSib

The initial idea was for teens with a sibling that have autism to share their experiences and offer support and such but after posting on tumblr, I’ve decided that this is also a place for teens with autism who will also be able to share their experiences and perhaps offer support. Theres not support group that I’ve come across that offers support to both and I think thats the uniqe thing. Its really important for us to educate ourselves about autism but at the end of the day, we need to keep in mind that each and every individual is different and I think being able to read about experiences from both sides will gives us an indepth account of life with autism and how it can affect people in different ways 🙂

I’m not a saint and I don’t believe I can create a miracle but if I can create a place where people can be more understanding about autism and its affects then why not? It goes back to the whole being about not being able to do it. I won’t know unless I try. And if I can just open the eyes of just one person then  its worth it. If I don’t, then I will continue to write in this blog and just enjoy life with my brother 🙂

Also on another note, I know some people with autism would want to be referred as being autistic and others differently. Just because I refer to my brother as someone with autism doesn’t mean I will call someone similar to my brother that. If that person wants me to refer to them as autistic, then I will. It’s just the matter of opinions and how people view things differently. I can see the difference when people refer to someone as being ‘autistic’ and referring to someone with autism. Theres negatives on both sides. I guess by saying that A has autism does sound like they have a disease but for me, its the same as saying A also has a flu. We don’t runaway when we say A has a flu because we know what a flu is. But when we say A has autism, I won’t run away because I know what autism is. But those who don’t understand or know what it is will. But a person with autism may or may not see that differently. Who knows. And maybe this project will be able to give teens a bit more knowledge on what autism is. But I think till people study upon the basics of what autism is, then the stigma from both will just disappear. When the day comes and my brother asks me to refer to him as autistic, then I will refer to him as autistic.

But wouldn’t life be easier to just refer to each other as an individual minus the labels?

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Too many unnecessary words guys!

Children with Autism are known to have a very limited vocabulary.

This being said, when giving instructions or asking them to do something, ask them in the most simplest and most direct form. For example, don’t say ‘Hang it over there’. This will make the child with autism confused because to them, they don’t know what ‘it’ is, or what ‘there’ is either. They won’t understand the meaning of those words so instead, say ‘Hang your coat over by the door’. This would be so much easier for them to understand because they know that they have to put THEIR COAT by the DOOR. Children with Autism take things literally so the second example would make life so much easier for both child and parent/sibling/others. It’s simple, and directive.

But with my brother not being able to say actual words and just babbling when he does say something, even speaking in sentences seem useless. Sometimes, you think ‘Why even try?’, but the thing is, YOU HAVE TO TRY. Having a negative attitude will get you no where. You have to try, you have to be able to think and believe that if you keep trying, they’ll be able to understand. And soon, they’ll pick up on it. We were told by staff and others to say the word when performing an action. This is so that the child would be able to put the meaning behind the word. So when my brother comes up to me and puts his arms up because he wants me to pick him up high, I have to say ‘Up’. So the next time he hears the word, he’ll know what ‘Up’ is- maybe not straight away but perhaps in the near future. It’s situations like these were I feel as though using a word rather than sentences is better for him, so he’ll be able to understand a word rather than a jar filled with words he can’t relate to. (at this point, I don’t know if I’m making sense but if you understood it, 10 gold stars to you!- no sarcasm intended, I’m serious)

However, I sometimes think that maybe in some cases actions speak louder than words. For example, when I want my brother to come to me, I flick my hands towards me when I have his attention, and he does come to me and I hug him in return as a reward for him understanding. Though, times like these I don’t know what words to use. ‘Here’ is the one that comes to my mind but I still think that word would confuse him but I guess it wouldn’t hurt to try 🙂

I’ll end this post here. I’ll be honest, I can’t remember the point I was trying to make but I guess the point was, with and autistic sibling- don’t bombard them with truckloads of words they won’t be able to understand. Keep it simple.

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Sensitive to sound?

So recently I, as well as my parents have noticed that whenever we change the channel to this specific channel, he runs behind someone and hides his head  or goes into the kitchen and hides- or he’d take the remote and want you to change it. It’s funny because before when we used to change it to this specific channel, he never used to hide or anything. But now he does.

Yesterday couldn’t have been any better timing as yesterday, I managed to pick up ‘Ten things every child with Autism wishes you knew’ again and started and finished reading chapter two- ‘My sensory perceptions are disordered’.

*SPOILER ALERT*

(FOR THOSE WHO HAVEN’T READ THE BOOK, PLEASE DO NOT READ BEYOND THIS POINT- OR YOU CAN IF YOU WANTED TO)

2. My sensory perceptions are disordered.

Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me:

My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Music whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing — the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.

*Small extract of the chapter which can be found in this website: http://www.ellennotbohm.com/article-archive/ten-things-every-child-with-autism-wishes-you-knew/

I found out that the channel or more importantly, the adverts featured on that channel (since he hides away from those) may be an overdose of visual images and sounds. Note: I’m saying sorry in advance for using this specific example but its the best way to explain it- its like having an overdose of someone’s fart clogging up your nose and you can’t stand it so you want it to go away so bad before it drives you crazy! I guess thats how its like for him. And perhaps this changes every now and then, I don’t know but it is something I’m going to look into but at least I can tell my parents that its too much for him. However this then means that he’ll need some form of sensory therapy which I’ll raise next time I see the paedetrician or when I visit his new school c: I swear, this book it like the Holy Book of ASD :’)- or something like that o.o

On another note, as much as I would love to post everyday, I can’t. I’m doing a lot of things and theres just not enough hours during the day but I will try and post at least once a week- THANKS GUYS! Also, I do appreciate each and every person liking my posts :’)

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It makes sense.

So I’m currently reading  ‘Ten Things Every Child with Autism Wishes You Knew’ by Ellen Notbohm and I came across and extract which she included in her book that opened my eyes:

‘Two roads diverged in a wood, and I —
I took the one less travelled by,
and that has made all the difference’

    -Robert Frost

I first heard this in The Suite Life of Zack and Cody but jokes aside, this made complete and total sense to me. It never really occurred to me to look at my brother as someone who took the road that was less travelled by. But now that I do, it makes sense. The fact that my brother has Autism isn’t the end of the world. When we first told- sure but realistically, it isn’t. He’s still healthy. It’s just, he has troubles with his communication and understanding and because of this, he took the road (not on purpose of course) that not majority of the population travel by. And that has made all the difference. He’s still the same as any other child, but the fact that he took the road thats less travelled by.

I can actually relate this poem to something that I did today that many can relate to. It’s so common, I’m actually cringing right now. On my way back from college, I decided to take a different route home. I don’t really go down this route much but still, I managed to get home. And that has made all the difference.

I made a choice, and I try to make the best out of that choice (even though theres nothing fun about walking home o.o) however my brother, even though he didn’t have a choice, we still have to make the best out of that choice because we can’t ever change whats happened. And I believe that because he took the road less travelled by, it will shape him as an individual with unique traits that make him different..  just like everyone else. And I think being able to see all the improvements in the future it something worth waiting for.

You can read an extract from her book here: (at least I think it’s an extract)

http://www.ellennotbohm.com/article-archive/ten-things-every-child-with-autism-wishes-you-knew/

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To eat or not to eat.

So my brother was having one of those days where he’ll refuse to eat his tea. He had just come back from the dietician and she said that he’s improved which is always great to hear! 🙂 But oh no, coinkidinkily (pardon my use of random words that aren’t from the english dictionary) he came back refusing to eat. My brother has this thing where he’ll eat but only if the channel is switched to 998 which for those who have Sky and live in the UK know that its one of the channels where Sky go on about their awesome whatsits. But yeah- that channel was on so he was refusing to eat. So mum got out his storio (http://3.bp.blogspot.com/_kUSTO85AS-c/TLrFTtvwfOI/AAAAAAAAB9Q/O-1cJJ1b-yM/s1600/storio.jpg) which he absolutely loves but he still refused to eat. In the end though, he had weetabix. I don’t know why he does that and I don’t think we’ll know anytime soon. I wish we did.

So he’s currently on his Storio, playing away but oh wait- the batterys dead and now he’s crying. He does this really cute thing where he’ll try and turn it on (despite the battery being dead but he doesnt really know this or maybe he does o.o) and if its not working, he’ll grab the finger of myself or anyone in the family and he’ll indicate that he wants them to turn it on. Its really cute c: Though it gets a bit much when he starts crying again and you have run round the house, trying to search for more batteries and when you do find them, it can be a bit difficult taking the toy off of him o.o

Oh so I have a question in my head. The dietician said that its not good that he drink from those plastic cups with the straw thing (http://ecx.images-amazon.com/images/I/41WcAxeeWfL._SL500_AA300_.jpg) because it’ll change the shape of his jaw or cheeks o.. o But isn’t that the same as drinking from the straw? It makes no sense o.o

Just remembered. We have this mat with numbers on and in the morning, I held my brothers hand and we went from one number to another and then I said its his turn. Not sure whether he understood that it was his turn but anyway, he managed to say ‘One’ C: like not with confidence I guess but more of a whisper? And he tries to say ‘Two’ he’ll say ‘T’, just the T but its massive improvement! I guess with lots of repetition, it does pay off. I mean if you keep saying it and show them the numbers- they’ll put two and two together (see what I did there? Pun wasn’t intended ^___^)

Still googling on the flapping thing. So far I’ve read that its their way of expressing themselves? o.o *googles some more*

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Bad moods come and go.

So my brother was in one of those moods where he’d just become frustrated at everything and cry. He usually leaves for the nursery all happy but today, he left the nursery in a sad mood. You could tell by the looks on his face, his top lip was in and his bottom lip was out and he had his head down. I wasn’t here when this happened, I was at college but my mum  told me when I came back. At first I thought it was because he wanted to wear his new shoes. We brought him new shoes yesterday and he wouldn’t take them off! Not because they were new- though we wouldn’t know this really, but because he knows that when he has his shoes on, it means its time to go outside, and he won’t take them off till he goes out. But yesterday after a few hours, he took them off, and he didn’t even cry! I call that progress 🙂 Anyway- I digress.

He came back from the nursery and he was still in a bad mood. When I tried to make him change out of his uniform, he started to become even more upset. My mum then tried and he kept following her. We have a temporary bed downstairs (dont ask why but it’ll be gone soon) and he jumped onto the bed and started crying even more. My mum later brought out his tea and after that he was all fine! It must be frustrating for him to communicate what he wants to tell us. I mean, I get really frustrated not because of him but because I don’t know but it must be even more so for him and it kind of breaks my heart a little. I just want him to be able to tell us- but he doesn’t know how. And it’s something we all need to work on but its really frustrating because I want to do activities with him and help him but college is taking over my life. *sigh* only 2 more weeks before I’m done!

He has this toy where when you wave it, it flaps? o.O But he loves it! And I guess its because it flaps? I’ve always wondered why children with Autism do that. I think I’ll do a bit of research and find out, then maybe post it on here 🙂 So maybe if someone stumbles across this blog, they’ll know? o.o Also, I’ve been reading this book called ‘Ten Thing children with Autism wish you knew’ by Ellen Nothbom? Its really good! I’m trying to read it during the few moments when I’m free and I’ve only managed to read a few pages but I have to say, its really opened my eyes! I’ll let you know what I think of it- maybe I’ll even do a review ? 🙂