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Another through the eyes of my own.

Long title, but I felt some what enlightened  wordy today.

On Thursday, I finished my volunteering placement and honestly, it was really great. I’ve met a lot of people, and I’ve come across a lot of children, many of whom have disabilities and whom have made a lasting impression on me. There were these two twin girls and both came in with their mum on all three days. During the first two days I noticed signs of flapping, and no eye contact and one of the twin even  mumbling a word or a phrase over and over again. My mind instantly flashed ‘Autism’ but I didn’t want to make judgements nor jump to conclusions but as I was interacting with other children whilst they were near, it was apparent that they were- and I am not saying this in a total judgemental way like everyone who does this have autism but because I kind of compared their behaviour to my brothers.

During the second day, I was in a room with one of the twins who stumbled across an ‘In the Night Garden’ jigsaw and she sat down, completing it whilst uttering ‘Makka Pakka’ and ‘Upsy Daisy’ (both characters from the show). Her mum then came into the room, looking for her and she was really nice, it was the first time I saw her. She quickly told me that both her daughters had autism and their latest obsession was In the Night Garden and I couldn’t stop smiling throughout. I haven’t come across another child or anyone for that matter who also had autism. What made me smile even more was the fact that they were both the same age as my brother. Their mum even told me that they’ve begun to mumble the names of the character even though she’s been trying to get them to say mummy or daddy and it’s here were we both cracked up in laughter.

It’s amazing because looking at both of the twins, their behaviour is really really similar to that of my brothers however, they’re very different too, with speech being the main concern. They were able to mimic whilst my brother can’t. They would play with toys that don’t exert sound, my brother only plays with toys which make sounds. I couldn’t stop smiling throughout the day for some reason. Throughout the day, I tried to make attempts to see whether they would respond to me but they didn’t which I was completely fine with. However, something happened on the last day of my placement.

On Thursday, I was instructed by one of the play leaders to supervise a station which had this big inflatable slide which you had to climb and then slide down to. It also had these big plastic wobbly bits to run through and a ball pit to jump in and get out of, kind if like an obstacle course. Diverting a bit, I was so scared to climb on top, I didn’t so big floaty slides but I thought ‘what the heck?’. It took me THREE attempts to get to the top, whilst it only took the kids one try. I had to sit at the top and see that the children got down the slide slowly. So there I was, doing my thing whilst interacting with one of the children when suddenly, one of the twin comes up.

At first, I say hello and naturally she didn’t even look up, she just slid down. When she came back up again, I thought I’d try something different. I don’t know, I guess I wanted her to respond. With my brother, it was easy because of all the intensive interaction but meeting someone with the same condition and being the same age as my brother, I knew that she wouldn’t respond but I don’t know, I was intrigued I guess. So as she went down, I yelled out ‘WHEEEE’ and as she hit the bottom, she looked at me. She actually looked at me. When she came back again, I did the same thing, and she laughed and looked at me again. The third time around, I yelled it again, she laughed and looked at me but before she slid down, she yelled it too.

And I don’t know, words couldn’t describe how I felt but simply put, it made my day.

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Volunteering!

Today, I volunteered at this centre which allows parents with disabled children come in and keep an eyes on their loved ones whilst they play. The main part of my job is to play with them and to supervise with them. This scheme runs 3 days a week, during term time. I heard about this from my best friend who volunteered during last term and I thought it would be really cool to do it too! Today was my first day and I’ll have to admit, I was as nervous as… anything.

I arrived probably 10 minutes before we were to start and arrived in a middle of a pep talk given by the scheme leader to all the volunteers. She then introduced me to everyone and bam, I was left to fend for myself. She basically said that everyone needs to be at different stations so I stuck to the one closest to the door, the ball pit. It was a bit awkward at first because no children were going in and was just left standing there, and looking around. When a child did go in, I didn’t know whether to interact with them or anything because.. I don’t know really. And then 15 minutes later, I got moved to another station. And I got moved to the bouncy castle. And I think it’s from the bouncy castle is when I started to get a bit comfortable. Because something just clicked in my head.

I thought “eh, I’m just gonna do my own thing,” and then started interacting with the kids and being all silly, I mean why not you know? I thought at first, it’ll just have to be just supervising them because a few other volunteers were just sitting there and I thought, let’s just copy them. But come afternoon, it completely changed and by the end of the day, I was completely drained out!

There was this one boy, I can’t remember his name but I think he had severe cerebal palsy? Not sure, because I don’t exactly know but he did have trouble walking and sometimes he would have to crawl and he was playing on his own and I just felt really upset. All the kids were playing with eachother and here he was in this one room, playing on his own. I then saw him trying to go to another room so he grabbed a hold of my hand and I took him into this room with a CD player and I sat with him, and saw him putting the CD in and taking it out repeatedly whilst saliva was coming out of his mouth. Obviously I wiped it for him. Even though he was just doing the same thing over and over again, I just felt like I had to be there because no one else was. I didn’t want to leave him alone. Also, he tapped my head at one point and was smiling and that kind of touched my heart a bit.

I had to go to the toilet because I get a bit… OCD when it comes to germs and such and because I was wiping his saliva and a bit got onto my hands, I really needed to wash them before I lost my mind and there was no one else around so I quickly went to the toilets which weren’t far. Whilst I was in the toilets washing my hands, I felt incredibly guilty for just leaving him alone so I hurried back but then I remembered, in the video games room, some boys were fighting over the Playstation and I did tell them that when I came back, thats when they had to swap. So I went back, sorted that out and yet, when I came to check on him, he was gone. I asked my best friend where he went but she had no clue but we assumed that his mum came over to pick him up.

Even though this happened, I just felt incredibly guilty. I know it’s not my fault but it’s the fact that he was alone, and I left him alone. Like who knows, the whole day he was probably playing alone. When the guy with the reptiles came in, most of the children and parents gathered round to see them but when I got told to kind of supervise the back rooms and saw him playing on his own, I just felt… upset. But there was nothing I could do but get on with my job so I did but I knew that it was something I’d remember for a while.

I spent the afternoon staying away from the reptiles and back to the ball pit, where I interacting with this girl and her brother. Her brother had cerebal palsy in his leg, and he even told me that too and I was surprised really- the fact that he told me considering I was the newbie. I wanted to think of something witty to say, something that would make him feel better but in the end, I came out with “Let’s see if you can chase your sister in the ball pit,” and he did. It was great. We hid things in the ball pit and took turns to find them, we pretended to be animals stuck inside, they wanted me to push them in so I did, it was great fun! They were one of the last families to leave and you know when you made an impact of a little child when they come up to you and hug you tightly, asking whether you’ll be back on Thursday. And it just made my whole day. And I honestly can’t wait to see them again.

I think there are some aspects of the day where it did hit me hard and I did find it uncomfortable. What I found most hard was dealing with children who had conditions which I didn’t know how to handle. And seeing some children play alone. Another thing that I found hard was socialising with the other volunteers. Sure, I was able to socialise with some but I think there are a few which maybe I could have made more effort but my shyness held me back? Maybe they were shy themselves and held themselves back? I don’t know but I think when you’re comfortable with those around you, that’s when your at your best, and that’s when you enjoy what you do. Tomorrow, I will definitely make a greater effort with the socialising with the other volunteers.  Despite this, there were good times and I can’t wait to go back tomorrow and revisit them.

Tomorrow, I’m donating a toy bike to them. It belonged to my brother but he doesn’t use it any more. To be honest, he never really used it in the first place. It’s still use able and robust but the fact that I’ll have to carry it with me tomorrow and take it in is a bit nerve wracking. Like, i’ll just turn up with a car and everyone’s just staring at me and I’m like “PLEASE, I SWEAR I AM NORMAL I AM JUST DONATING A TOY CAR FOR THE SAKE OF THE CHILDREN!” Q~Q

I hope they take it in though o-o I don’t want to carry it back to the car!

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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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The epic battle of remote a.k.a channel changer.

As if it isn’t bad enough trying to watch T.V and having 4 other people who want to watch something else- my baby brother decided to join in as well!

If he were watching something, and then suddenly he starts playing with his toy piano and you decide to change the channel- he’ll become upset. I’ve come to learn that even though he’s not paying attention, he still likes to have the channel on to whatever he was watching previously. When he becomes upset, he’ll take the remote off of you and kind of shoves it at you for you to change it. It’s really C U T E!  >~< But can be a bit of a nightmare at times.

I remember once, he went the whole day without letting anyone watch anything and the other day- mum decided to change things up a bit so she changed the channel to something she usually watches and put the remote out of his reach. Of course he started crying… still continued to cry until I think, he got the message. SO the next time something similar happened and my mum put the remote out of his reach, he didn’t cry. He just did whatever really o-o

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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*