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time to scoot!

We brought my brother a scooter even though he doesn’t know how to ride yet.

Hopefully he will. Nothing too expensive (because we don’t know whether he’ll do it or not) but it’s a task we set ourselves to see whether he can do it. And I believe he will, just like he has with everything else. Again, it’ll require time but I think he’s already showing signs of actually conquering it. Ok sure he might put both of his feet on top instead of one put he pushes himself forward with his own weight. It’s really cute!

I think a key thing is letting him explore and see for himself how it works before teaching him how to actually do it.

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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.

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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.

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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!

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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!

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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!