0

the not so picky eater.

One of the biggest improvements has to be my brother’s diet. I mean, yes he’s still picky but he’s a bit more open to a few more things like:

  • Bread and biscuits dipped in tea (HAS to be dipped in tea or milk so it softens- biscuits vary)
  • Chips
  • He’ll have anything meaty as long as it’s not chewy and has zero spices because he can’t take the heat!
  • Crisps of all sorts minus strong flavours like prawn and cocktail, salt and vinegar bbq etc: he’ll basically have cheese and onion and ready salted
  • Cheese and onion pasty

…. and a few more things but that’s all I can think of from the top of my head.

But looking at this short list beings a huge smile to my face because compared to before, where he’d only have things like boiled rice or weetabix, both with the same consistency and texture, he’s much more open to other textures and tastes and it’s a massive step for him. I think it comes down to trying. Even when  you know they won’t taste it, it’s better to try. And I think that’s what’s worked.

0

a pick me up.

My brother has this one habit where if we go for a walk- ten minutes into the walk he’ll given up and he’ll want to be carried. And if you refuse he’ll actually sit on the floor, no matter where we are. Once, me and my mum were on the way back from the doctors and he just stopped walking and lifted his arms out to my mum which usually means that he wants to picked up. So he’s just standing there and my mum is refusing to pick him up so, we what we do is we take a few steps forward to see whether he follows us but no! He decides to sit on the floor!

It’s quite hard to try and get him to walk for longer so I don’t know how we’re going to go around this. We’re thinking of getting him a bike and perhaps once he learns how to work it, he can cycle instead. Here’s hoping this works and if not then it’s back to square one!

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the importance of teamwork.

I don’t think I can stress enough how important it is for everyone in the family to be involved. That’s one important thing I’ve learnt and I’ve learnt it the hard way.

Around April of this year, I finally hit rock bottom. ‘Stress’ couldn’t even cover it and I wasn’t just mentally frustrated but physically, I thought I was going faint. I remember sitting in front of my laptop trying to finish an assignment, worried sick over an email about me potentially failing a module over attendance and my Dad standing in front of me, harping on about private SaLT’s and whether they’re after your money. As well as being incredibly anxious, I suddenly had this sharp pain on the right side of my head and I remember thinking two things: I can’t take it anymore and What is happening to me?

It’s at this point I knew that I had to tell my tutor at university and it’s at this point I realised how much I had lumbered onto me. My tutor arranged a coffee meeting and that’s when I spilled all the beans and after I had told her, I felt so much better. It’s really important to tell someone how you feel, full stop. One thing became apparent- my siblings weren’t involved. I always knew this of course, but when my tutor asked about whether I had any other siblings, it became apparent that not only had I noticed but someone from the outside looking in realised that it was just me. And on top of trying to be there for my brother and do all these activities with him, I had to juggle university. Being the ‘eldest’ girl especially, it’s normal for mothers or both sets of parents to turn to this specific child for help and advice and just to unload their worries- or so my tutor had told me as she went through something similar being the eldest girl.

I don’t mind my parents telling me abc or asking me questions abc, it’s just- sometimes, I need a break and I’d appreciate if someone were to come and take over from me for just ten minutes. This is one reason why I would like this to become something bigger than just a blog- I think what a lot of people don’t realise is that Autism also affects the siblings. And each sibling will understand it differently than the other. There isn’t a guide that’s given out. There isn’t a handbook telling you all about sibling 101 and how you should act around your sibling. There isn’t anyone there to actually talk about how you feel and for that person to actually get it. 

As the sibling, you’ll forever be asking questions and no one there to answer. You’ll Google things and you might get it but in reality you actually have no idea. How does this exactly apply to you? What does any of this mean? What do I have to do? Questions, questions, questions!

I am definitely more involved with my brother’s autism than my other two siblings. And it’s hard because through this whole journey/process, I’ve sort of developed my own way of carrying out activities with my brother, knowing what might work and what might not and develop my own understanding of what Autism is. I’m not asking my siblings to do what I’m doing. All I’m asking is for patience and understanding and these are things which they lack. And I think it’s because of two things a) they are still coming to terms with it and don’t know how to deal with it and b) they just aren’t informed.

It seems harsh to say now that I re read it but I think there is a slight truth in that. Yesterday, I was hoovering the hallway and there was cord outstretched in front of my brother as he runs towards the toilet. Before I could even react, my brother trips over the cord and falls down. It was my older brother’s responsibility to make sure he went to the toilet so he was just trailing behind him and I was frustrated with him.

Me: “Why didn’t you stop him?!”

OB: “How is it my fault?!”

M: “Couldn’t you see the cord! You should’ve pulled him back!”

OB: “How was I to know he’d run through it and not walk over it?”

M: *sigh*

It’s circumstances like the above that make me wish they were more involved. My parents and I both know that my younger brother would walk through things like that instead of going over. It’s just how he is, he doesn’t notice these things. And it really irked me when he said that he didn’t know. It really did.

I also remember the time where it was perhaps a few months after my brother was diagnosed with Autism that something happened with my sister and I regarding my little brother and she said “No one told me he had Autism”. This is the thing. She knew our brother was autistic but what I inferred from this was “I don’t know what to do or what Autism is”. I really do with there was something for siblings and that would be a dream for me: to perhaps create a group where people can attend, talk about things, just chill out, learn what Autism is- maybe even create like a booklet letting people know that it’s ok to feel like this and here’s what you should know: you are not alone.

All that I know of Autism is because of the fact that I became my mum’s pillar of support and I decided to read the full 101. I’m not an expert and in no way do I get things straight away. It takes a while for me to understand something and think, how does this apply to my brother? Maybe if my siblings had something that allowed them to understand Autism better and see how this effects our younger sibling then perhaps, they’ll be able to interact with him better. And then maybe we as siblings can sit down and have a chat and when my parents are unsure about something, we can all contribute to the conversation instead of it just being me and my parents.

0

Never Gone..

Hooray for a Backstreet Boys reference!

It’s been a while, and I feel like now is a good time to pick up from where I left off. A lot has happened since the last post and I hope you silent readers haven’t missed me too much! (joke). I have so much to say and I really don’t know where to start.

How have you all been?

My first year of university just whizzed by and I’ve been off for almost three months, just hopelessly looking for a non existent part time job to keep me busy during my time off from uni. My brother who is now 6, going on to 7 has just finished his school year and will be going on to Year 2 this coming September. He’s going to be in the same class with the same teacher and when my mum first heard this, she panicked a bit because she thought he was going to be held back but luckily, we got this clarified.

And yes, my brother is still non verbal.

On the last post, I mentioned that I had hoped that 2014 would be the year where my brother would improve his understanding or even his speech and I think I can honestly say that there have been some improvement in regards to his understanding. In regards to his speech, there’s been a tiny bit but I think I’ll make a separate post on that. Actually, I’ll just make a separate post on everything that’s happened since my time off from this blog.

I’m hoping that from now on, I’ll be active on this blog because now that we’re both growing older, I think it’s important to record these things because later when we look back, it’ll be really interesting.

I’ll sign off from here for now and work on a few posts for next few days!

0

Hello? Hi? I think I’m alive…?

It’s almost been three months since my last post on here! Wow, I think that’s the longest ever I’ve gone without blogging! So how have we all been?! Firstly I should say sorry. Yes I did take a break because I had exams and yes, they are important but I guess my break was younger than it should have been. It’s only up until recently I felt really bad about not posting anything because come on, this blog is kind of like my baby. In that metaphorical sense of course.

I was just reading over my last blog post and I don’t know what to say really apart from that I’ve been more happier now than I was 2/3 months ago and that’s due partly because of the amazing support I’ve had from my family and friends for helping me move on from my aunt’s death and just taking time out for myself. I also noticed that I mentioned something about the SaLT situation but instead of writing about it on this post, I thought I’d write a whole post about that. So what’s new you say? Well, tomorrow I have my driving theory test which I’m nervous for because I don’t think I’ve been revising as much as I should. I’m sure I’d find it a lot easier if I did the revision whilst taking driving lessons WHICH I tried to explain to my parents but for some reason, they were so dead set on me taking the theory first. But whatever, I’m still going to have to take that theory test some day right? As well as the theory test, I have just booked my first driving lesson for next week! Boo yah! I’m really excited about it and my instructor seemed nice (over the phone harharhar). The other day, my dad was teaching me the clutch/accelerator/brake/changing gears and it was really funny seeing him work the sofa as a car! But to be fair, I’ve been doing the same for a few days now. Another thing next up on the calendar is results day! Ugh, the dreaded results day!

On one hand, I’m so eager to know what I got but on the other hand, I’m so scared. I know I’ve revised and I just want that hard work to be worth it by going to Herts! I really really really want to go there >~< I think I should stop talking about this now or otherwise I’ll just go on and on. But I really want to go guys! So much!

As for my brother… thankfully, he’s improving. Speech wise and I’m so grateful for this, he’s been babbling a lot more. And I’m hoping the more he babbles, the more he’ll do it and eventually he might actually say something. My parents keep telling everyone that he only babbles/reacts whenever I talk to him. In a way, I’m happy because I feel so honoured and great that whatever I’m doing seems to have an affect on him but at the same time, I want the same for my parents. I mean, why me? Not that I don’t like it but they’ve been doing what I’ve been doing yet he reacts to me more? I don’t know, sometimes I wish I was microscopic so I can jump into his ear and see how his brain works. Another new habit my brother seemed to pick up in slamming doors. I don’t know where he picked this up from but he keeps slamming the door whenever he enters the living room or another room. It’s quite cute and funny actually.

There’s actually one other thing that’s happened since the time I’ve been away from this blog though I think I’m not going to mention it here but rather in another blog post.

I think I’ll end it here because I really need to revise for this theory test tomorrow but the posts will be back so stay tuned. Oh and before I leave, I want to say thank you for all the support. Each like or each comment I get is a huge confidence booster and I’m not that confident myself. It also motivates me to try and help my parents as much as I can, and help my brother too in becoming the best that he can be.

So thank you. I really appreciate it.

Oh I just remembered!

Happy 1 and a month (?) blirthday- YES BLIRTHDAY to this blog!

2

Boy Vs Dinner and the power of ‘NO’

I’d thought I’d update seeing as though it’s been nearly over two months. And boy did a lot happen in two months. They’d have to be one of the most challenging two months of my life what with the loss of my aunt whilst trying to keep on top of revision, coursework and exams. Oh and not to mention sorting out my brother’s speech therapy referral. I have to say, I’m pretty disappointed with them but that’s a completely different matter.

Challenging is the best word to describe these past two months. The only motivation that I have is the fact that it’ll all finish in three weeks. From June 5th, I’ll be free of any form of college works whatsoever. And then the anxious wait for my A Level grades will begin! Other than that, I really haven’t been up to much.

In actual fact, I should be revising now but I thought I’d take the time and blog something and here I am! Firstly, you’ll notice that I’ve changed the layout. I was pretty bored of the old one and wanted something that was new, free and well awesome. And I’ve found it! BWAHAHA! My brother on the other hand, has been up to a lot. Kind of.

Well, we’ve learnt that he’s an awesome swimmer as told by one of the teachers in his school. He still uses armbands but apparently, he’s taught himself how to float on his back which is really really really great. And with one of those long floaty things. You know, the ones that look like a sausage? He’s also becoming quite the artist. He doesn’t really do much hands on arts and craft but he did a really cute hand printed picture and I really love it! I love all the colours and the uh.. movement of the strokes? It’s currently hanging on the back of my bedroom door and I practically smile every day just looking at it. Though suffice to say, he hasn’t really painted anything since.

You can see his artwork by clicking on the link 🙂 :

https://twitter.com/AutismAndTheSib/status/334701467871084545/photo/1

During the period when my aunt was still alive but really ill, my parents went back and forth to visit her. On the day she passed away, they went immediately but I told my mum to leave my brother behind because he wouldn’t like the atmosphere there so she did. It was the first time in my life where I took on a temporary sole caring role and I was nervous. I was nervous because what if he realised my mum wasn’t at home and cried? Or what if he threw a tantrum and I couldn’t calm him down? I had all these worries in my head but I made sure that whatever happened during the time they were away, it was my job to make sure my brother was happy and content. Yes, my other siblings were at home too but they were getting on with the own stuff.

Surprisingly, my brother was sound. He didn’t cry, he didn’t throw a tantrum. I was able to feed his snacks without any difficulties. We played together for a bit, a few cuddles then he went off to escape into his own little world. Though, the biggest obstacle was yet to come. Dinner time.

I don’t know but on most occasions, dinner time seems to be a challenge. On some days yes, he’ll eat his dinner but on other days, my mum would struggle to feed him because he simply doesn’t want it. My brothers always been very picky with his food and it is difficult to feed him. Before my mum left, she did give me a list of alternatives in case he didn’t eat his dinner. Sucking it up, I went to prepare his dinner. Being asian, rice and curry is what we tend to have on most days for dinner. Even my brother. But we do incorporate protein and veggies just so it’s healthier than some curries which is filled with just oil and other not so healthy curry making necessities o-o

So I mashed up the rice because my brother doesn’t really like chewing a lot. I mean he chews but he doesn’t like it. Then I added chicken and some veggies and mashed the whole thing before heating it up and serving it to him. Then, the time came. And bam, he refused to have the first spoonful. My heart was crushed and my brain was in full panic mode. Just what exactly was I supposed to do now? I remembered my mum gave me a list of alternatives but frankly, that went out the window since I was panicking alot. Then something popped into my head. Sometimes when my mum feeds my brother, she usually gets his interactive book out and gives it to him and then he eats his dinner whilst playing it. So, I thought I’d do that.

I got the book out and gave it to him, and readied the first spoonful. But he still refused to have it. I don’t know what happened after since it was all a blur but I’m pretty sure that I was close to having a full on panic attack or something of that sort. But I remember just taking the book from him and going into the kitchen. Naturally, my brother started whimpering and followed me into the kitchen wanting his book back but I was firm and said ‘No,’. I put the book somewhere so he couldn’t reach it and refused to give it to him.

After like 5- 10 minutes or so, I took the book into my hands and went back to the living room, where he sat in his seat, looking at the book in my hands. The first thing I did was ready a spoonful, I looked at him and began to move the spoon closer to his mouth as well as the book, closer onto his lap. Once he took the first spoonful and the book was in his hands, a wave of relief overwhelmed me. SUCCESS! I FED MY BROTHER! I overcame the obstacle of him not eating and in a way, I think I taught him that if he didn’t eat his dinner, then he wasn’t going to get his book. I even managed to finish feeding him! Straight after, I remember feeling really happy and confident, overcoming the biggest obstacle of the day and found even more confidence when I got him to sleep right away on his bed.

Honestly, part of me thinks that I got lucky whilst the other part of me thinks that I can do it again. Frankly, I don’t know what to believe!

One of the newest developments had to be my brother attempting to say the word ‘No’. It’s not very clear but instead he says ‘NNAAAAAH!’. But we think it’s the same thing. For instance, when he’s at home and he refuses to eat he says ‘NAAAHHH’ with a serious expression on his face to match. Or when he gives us the channel changer to put it on a channel he wants to watch and we put it on the wrong one, he says it again but a bit more upset. Sometimes, he’d say it with anger. But it’s awesome to see him using a word, even though it’s not clear to let us know that that’s not how he wants things done!

Sadly as of right now, my brother is ill. He’s been ill with diarrhea for three days! He’s even been throwing up everyday during those three days in the morning and he refuses to eat anything. Poor baby Q~Q I hope he gets well soon!

Referring back to my last post, I said I wanted to expand this project and I had all these ideas, one of them being creating a Youtube page and posting up a video on what this project is about. Right now, it’s on hold since I have exams but I will get back to it. I’ve also been thinking of posting up videos of my brother and his crazy wild antics and thought that would be pretty cool (:

Anyway, I shall sign off here and hopefully, I’ll talk to you all soon!

2

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!

2

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.

0

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!

0

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.