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Here’s the sitch.

(Note the Kim Possible reference. No? Ok then, moving on…)

So I’m in two minds. Well not really, I just thought I’d write that down so I know where to start or at least have something written down. Hahaha, I feel like a nervous wreck! Moving on.

‘Autism and the Teen Sibling’ started off as a blog (as you can clearly see), but then it formed into an idea for a project which you can read about here: http://www.junction49.co.uk/idea/3102/autism_and_the_teen_sibling/

I officially posted this idea on Junction49 on the 5th of August last year and since then, I’ve been doing a few bits and bobs- running this blog, Facebook page and Twitter page as well as logo and other such. And that’s all I’ve been doing. I’ve been trying to get word out and get people involved, perhaps post a blog entry and there have been people who’ve been interested but haven’t replied back. I feel like it’s time I started doing something for this project that may spark interest or ideally, I just want to give it that big push!

I feel like this project could benefit a lot of young people, siblings with autism or not: to create a community where they won’t feel alienated or lost and perhaps learn from each other. Please don’t laugh at me but I had a dream that this expanded and perhaps we could have like a ‘club’ set up in a few towns and people can come in and we’d socialise and do things together. It’s a pretty cool idea but right now, its too far away.

Other ideas included: wristbands, a book for teens by teens, website, a video, a medium educating young people about Autism perhaps aimed at siblings or teenagers, create a platform where if they need someone to talk to, we’re here.

I feel the need to apply for funding but I obviously can’t do that as I don’t have a solid idea as to what I want to do!

GAH SOOO MANY THINGS! But, I really do want to do something and for now, I may just play around with a few ideas until I get A Levels out of the way. But I would appreciate any ideas or comments that you guys may have. Here’s a thought, why not check out our Facebook page? 😀

https://www.facebook.com/AutismAndTheTeenSibling

 

But looks like I have a lot of planning to do!

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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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Its not all fun and games.

And thats the hidden truth. As a teen, you already have so many things to deal with however big or small and it can drive you crazy! Being the autistic sibling, I can’t even imagine what it must be like but being a sibling with a brother who has autism, I can say that although I appear to be positive and happy, there are times were I just go into an all time low because I feel that I have so much on my plate.

I still remember the day when my mum broke down infront of me upon hearing the news of my brothers autism, and that moment will forever be engraved in my head.. At the time, it did seem like Autism would suddenly dictate my brothers life because we didn’t know anything about autism, apart from it being classed as a disability. It’s funny really, once you hear that someone has a disability you suddenly feel sorry for him/her and you instantly think about all the differences that set you apart from that person. You think that this disability is bad because it’s restricting this person and now the course of this persons life will have to change completely for the worse, that they can’t do certain things because their disability doesn’t allow them too. I remember thinking these things that very night when we were told about my brothers autism. I thought about lots of things, and looking back I cringe at those thoughts because I feel that I shouldn’t have thought those. These thoughts included: How will my parents cope? Will he lead a normal life? Will he be able to speak? Will he need supervision? Why did God do this? What did we do to deserve this?

Those last few thoughts just make me want to slap myself silly. Because this isn’t anything to do with God at all. Sure, if your believe in fate and destiny.. But I believe that it can happen to anyone. Not because God decided to ‘punish’ us. For example, losing your sight is classed as being a disability and this could happen lets just say.. having acid being thrown onto you (it does happen)- and it can happen to anyone, n0t because God decided to do it.

I also remember that for weeks, I just felt uncomfortable and upset and out of place because I had my own set of problem which I really don’t want to go into at the moment, that I had to deal with. And yes, those problems even though they seem millions of miles away from my head right now, will always be with me. I felt as though that I was at the lowest because of those problems and my brothers autism just piled on top. Aside from the usual ‘How do I deal with it?’ I was also thinking about my parents, the questions they will ask which I wouldnt have an answer too, what to tell them for comfort.. I guess it being me who went with my mum to hear the news felt like I suddenly had a responsibility to ‘fix’ things or make things ‘better’ and the thought of this made me just.. want to stay in bed and never come out. Yet on the other hand I also hated myself for being so selfish and even took it out on myself. I remember thinking that I must be the most horrible daughter in the world, putting my problems first and not doing anything. I was also angry and confused with my siblings.. because they seemed normal enough, as if it was nothing. I was angry because they weren’t the ones watching my mum crying and unable to do anything. I was confused because of the way they were taking it. And I also found it ‘unfair’ on how they didn’t seem to have the responsibility too- (I’m the second eldest, and theres four of us) I felt as though I had enough problems as it is, with the A+B (dont want to mention), feeling like I’m failing college, no motivation, letting my fears take over me, confidence issues, anxiety.. all sorts- like they didn’t seem to have any worries..

I think what made me change my whole outlook was the following question- ‘Does autism change the love I have for my baby brother?’.

And the answer to that is… *drum rolls* No it doesn’t. Some people might as well have been criticizing me for even contemplating such a question but guess what? I would be criticizing myself too. Why would I even change the love I have for my brother because of my brothers autism? It’s just a silly question! But as silly as it was, it gave me motivation to change. Being the second eldest, I have only ever been there for witnessing my sisters birth (not there as in labour but there as in seeing her for the first time after birth) but even still, I can’t remember any feelings because I was young.. (I was around 6 at the time she was born). But seeing my baby brother for the first time at the grand old age of 13, I remember having this instant love for him and knowing whatever life threw at us, I will always love him and being the elder sibling for the 2nd time, I’d protect him no matter what. So why would those feelings even change now that my brother has autism? Ha, it won’t ever change. NOTHING should and won’t ever change it.

I suddenly knew that the first thing I had to do was to do my research and be there as a.. Encyclopedia as well as a source for comfort for my parents, and thats what I did. I became very involved with my brother’s autism, making sure I listened carefully during appointments, making sure he recieved some form of therapy to improve his skills or intensive interaction to improve his eye contact or just the general relationships with his family I guess. I also figured that I can’t blame my siblings that they don’t have any responsiblity, because I kind of persuaded my brain to think it is and even though my parents tell me to take it easy since theyre the parents, the fact is that I can’t take it easy because I will also have this feeling that I SHOULD be doing something to help my brother.

That all happened during the first year. And a lot has improved- we have more up days but hey, I STILL have those days where I feel like absolute crap.

My cousins came over their little brother is 2 years younger than mine. And I’m not going to lie- when he talks, when he eats, when he just understands people around him, it does bring back those thoughts and I suddenly just compare my brother to him. Yes MY brothers diet is limited. Yes, I know that MY brother isn’t able to say words (yet) let alone sentences, and he may not be able to communicate fully now BUT he is improving- and each time he improves, it just makes everything worth the while. Every minute of me putting my college work aside, handing in assignments late, not paying attention in class was worth it when my brother suddenly knows how to wear his cap, or understands to sit down when I say ‘sit’. I’m not saying that its ok to ignore college/school work- they’re important but at the time I felt like I had no choice.

It still is difficult. I still struggle with doing my college work and going to work and feeling guilty for not being with my brother. I sometimes struggle with problems A+B, I struggle with trying to do well in college, I struggle with a lot of things.. but it is so much better right now than the situation I was in 2 years ago. I think thats the key thing that teens with autistic siblings struggle with- juggling it all (at least I do but hey, people may have other problems) But it is do able- you just need to make the time and I guess make a mental timetable though for others, its just easier to write it down and tick it off. One thing that I wish was there 2 years ago was someone who could help me as a teenager deal with my brothers autism at the time. I think its just so easy for a teenager to feel lost and out of place, especially in unknown territory- thats why I started up my project ‘Autism and the Teen Sibling’.

If your interested and want to find out more…

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

And follow us on: https://twitter.com/AutismAndTheSib

And if you want to submit a post (whether your an autistic sibling or have a sibling with autism OR even want to have your day) email your submission to autismandtheteensibling@gmail.com

I guess the reason why I chose to write about this topic was because I wanted to let people who are in a similar situation to me that its ok to have those down days- we all get them. Don’t beat yourself over it. And by doing so, you won’t achieve anything now would you? I should also mention before some get the wrong idea- that autism or any other disability shouldn’t dictate the way you or any other person to live your/their life! Each and everyone is different, so don’t allow stereotypes to dictate what they can or cannot do AND please, don’t disabilities change the love you have for your sibling- not for the worst.

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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?