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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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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!

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Obssessed with shiny clip?

My mum has this shiny metal clip that she wears on her hair every day and whenever she’s sitting down, my brother would stand beside her and kind of like, see himself in the clip because it’s shiny and he’d also kiss it o-o

Today my mum was brushing her hair and the clip was beside her on a table. My brother took the clip and went to my mum. He became quite upset and wanted her to wear it. Only when she finally put it on was he finally satisfied and my mum picked him up and he kissed it I think.

I’m very interested as to why he’s like this. Any one ever experienced something like this?

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Balloons and Updates!

Hello! Well it’s been over a month. I’m hoping NOT to make a habit of this but like I stated in my last blog post, college comes first. Thankfully, college finished tomorrow for Christmas break however, it doesn’t stop the amount of revision I have to do or the coursework I have to complete -.-

But I did promise myself to work on this project, however little or big it may be during the holidays. So here I am. From the last post till now, everything has been hectic. From college, to my brothers school. Well firstly, he turned 5 in November so YIPPEYY! He’s a year older. But because he’s a year older, it means we need to focus on his speech therapy even more. I know that in his new school, he’s going to have speech therapy every Thursday but I currently feel lost. As do my family.

And because we feel lost, we need to get updates. But it’s really hard because you really want to ask them but you don’t want to feel like your pestering them. I understood the work of a speech and language therapist but it wasn’t till I brought this book just how much work was involved:

http://www.google.co.uk/products/catalog?q=speech+and+language+therapy+book&hl=en&bav=on.2,or.r_gc.r_pw.r_qf.&bvm=bv.1355534169,d.d2k&bpcl=40096503&biw=1366&bih=667&um=1&ie=UTF-8&cid=6630321643989473167&sa=X&ei=EHnTUJbhDfKr0AWq0YCAAw&ved=0CE0Q8gIwAA

This book has become my guide, something I carry with me every where I go and to those who are aspiring to be a speech and language therapist- this book is a must have! Patience is key however it doesn’t hurt asking!

 

 

Ok so balloon’s have become my brothers latest obsession. Wait, it’s always been but we only have them around for birthdays and it was my birthday like two weeks ago so our house was filled with balloons. But never fear, my brother somehow managed to pop all 18 balloons. It’s scary when he lays his head onto the balloon when it’s on the floor so I tend to scream whenever my gut feeling says it’s going to blow. Jeehz I’m such a girl.

In other news, going to be working on the logo for the project. I feel that once I do this, I can maybe get things done slowly and get somewhere xD Oh and I have 3 offers, and 1 rejection Q~Q My heart hurts from the rejection but it’s ok… I wasn’t going to go there anyway ¬____¬ BUT I AM STILL WAITING FROM CITY! I hope I get an interview Q~Q

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It’s been a month and two days.

Not being specific or anything or highlighting my lack of getting things done.

In all honesty, did not ditch the blog! I was really busy with college and UCAS so I guess college commitments come first before this. So I thought, it’s been too long since I’ve posted in this blog so I’m sure taking a bit of time off of my college commitments won’t hurt 🙂

Other than me being busy with college, we’ve noticed that my brothers been starting to babble a bit more and exploring a wide range of uh.. consonants- kind of. Either way, he’s been verbal and that’s what counts xD He went to have his check up for this year at the center that first diagnosed him. So, when I came back from college, my mum had some good news. They had said that everything from his brain to his toes were perfectly fine. That he had improved. His mental age in a way to put it is now three which is great because it shows that he improved! Also, my mum asked him where he was on the scale- something that no one ever told us.

So the lady explained to my mum that my brother is able to do a lot of things but it’s just that he’ll only do what he wants to do a.k.a stubborn. But I guess it’s not stubborness? He just doesn’t want to do it, but he can do it. Which I guess upon hearing it made my mums day because she’s always noted that he was stubborn for his age, and the fact that he is able to do things gave her hope because he can do it and now she understands that we’ll just have to keep at it so he’ll do it eventually, slowly but surely.

Oh and a few posts ago, probably one of the first few posts, I wrote about one of my brothers medicine which stank like sh-. Well, we finally found a way for him to have it 😀 So my brother likes to drink his mango juice so we decided to mix a little in there. (Its a syrup and we checked with the doctor and it’s perfectly fine!) AND HALLELUJAH HE DRINKS IT C: They’re going to send him to a blood test to check his vitamin levels and all that jazz.

So things are looking a lot more positive c: I’ve learned that he’s going to meet with the speech and language therapist every thursday and I guess I’m really eager about how things go that I keep harping the school to update us about it (I’M SORRY, I CAN’T HELP IT Q~Q) But yeah, he’s going to go through an assessment and then they’re going to do things around that. I’d love to be there when they do it! But I don’t think I’ll be able to D: I recently brought a book about SaLT and how they do their work, and I’m honestly looking for some free time to read it. I just find the job of a speech therapist really awesome and the fact that you get to use your creativity in it too, I mean I have a few ideas ^^ But I hope I can do it. If I put my mind to it, I can.

I think the key thing to anything is to perseveare but DON’T OVER DO IT! Because soon the enjoyment just gets sucked out. *nod head*

Well I’m going to end it here since I have coursework to do and hopefully, I’ll post another blog up soon. Oh, it’s my brothers birthday soon! November the 13th! I’m going to attempt to make a double decker cake 😀 not that he’ll have any but yeah! 😀

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Kids ask the most awkward things.

During the weekend, my family and I visited our cousins in Wales since we haven’t been there in AGES. Note that they are my first cousins (mums side of the family) and my cousins are all married so their kids are like.. my nieces and nephews I guess o.o But yeah, they’re aged between 5-10 and when it came to my brother, boy did they have a lot of questions to ask.

“Why doesn’t he talk?”

“Why isn’t he listening to me?”

“Can he hear me?”

I don’t get asked these questions by people my own age or older because they generally have an idea of what autism is. But when your young and all innocent, you just can’t help but ask the obvious question. Answering simply doesn’t always solve this case because they’ll always ask ‘why’ afterwards. And I have no idea how to respond to those questions that would make sense to them. I am in no way saying that I am ashamed to talk about my brothers autism, but I have no idea how to speak to younger kids about it. How would you explain Autism to young children?

I’ve contemplated many ways to say this such as:

“My brother can hear you, he doesn’t talk because he doesn’t know how to yet but he will later”

But then I think, what if ‘later’ I meet them again and they ask why he doesn’t talk yet. Is it then when I say that ‘He doesn’t like to talk?’ Or do I explain that he has Autism? I feel the need to nail these answers so I’m prepared the next time I get asked. Its hard because you want them to understand but at the end of the day, their just kids and maybe it’s best to just give the most plainest, and the most simple answer.

*sorry for not posting, been busy with A Levels! It will most likely get really hectic from here on but I will try my best to post when I can 🙂