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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!

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!

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Mum, Mummy, Mother.

Judging by the title, this post is going to be dedicated to my mother, someone who up until recently became someone I truly cherished.

Don’t get me wrong, I’ve never actually hated her. Just your typical mother daughter arguments which we’ve had in the past which made me hate her and the world, but that’s just typical right? Back then, I thought my mum was  my mortal enemy, out to get me and keeping me away from all the fun but in actual fact, she was doing what mothers are supposed to do. To provide love, protection and reasoning.

They say when you give birth to your first child, your whole world changes. Everything. The birth of my first sibling changed her. She became a mother, but it wasn’t to last. I can’t even begin to imagine how heart breaking it was for my mum to lose her first child. You look forward to everything that gets thrown at you when you’re a mother but it wasn’t fair. No one predicted death to come along. In a way, I was glad I wasn’t there to witness the state of my mum at the time because if I were to witness it, I don’t think I would be able to handle it.

Around the time I was 14, me an my mum clashed a lot and as I said earlier, I thought she was out to get me. But it was just natural. My 18th birthday made me realise just how much my mum loved me. Even though this sparked an emotional response, it wasn’t about the gift but more of the thought that went in it. Since I was 13, I was harping to my parents about wanting a gold necklace with my name on it. My mum always said that it was expensive (indian gold) to which I understood so I wasn’t at all disappointed when I didn’t end up getting it as a present on my 14th birthday. I didn’t really ask for anything the next few years, I did mention the necklace but I knew it was something that I will definitely wait for especially since 4 years later, we were currently having a bit of trouble financially. My dad sold his business because of the recession and was and is still looking to open another so we were being really careful with money. My 18th birthday was approaching and in all honesty, I just wanted the Hunger Games DVD and a few bits and bobs, that’s it.

After a great day out with my friends, we went back round to my house only to be surprised by my family who threw me a surprise party. All I remember when I entered was party poppers being blown up in front of my face and balloons everywhere. A couple of photos later, it was gift giving time. And I think the first present was in fact, the gold necklace with my name on it. Something I once craved for and completely forgot about 4 years later. I mean, I was delighted to receive it.

“Oh my gosh I’m gonna cry,”

That was the first thing I said when I saw it. Usually when I say that, I don’t cry. At all. I’ve actually never cried tears of happiness ever, in my life. But that all changed on my birthday. The minute I said those words, I cried. First time in my life I cried in front of my friends. First time in my life I cried in front of my whole family. And it was the first time in my life because I was so happy. Sure, I the gift was awesome but it was the fact that she remembered. And the fact that during the times where we were being so careful with money, she splurged out on my gift and got be the necklace. It was then, and during a phone conversation which I overheard my mum talking to my aunt saying that she would go to the ends of the earth to give me and my siblings what I wanted.

My mum would do anything for her children, anything. I cried out of happiness and I cried because of guilt too. But it made me realise just how much my mum loved me, how much she would do for me, and how much she far she would go to support my dreams. Not just for me but for my mother siblings too. My mum would be willing to spend however much amount of money or time to make sure my younger brother gets the therapy or help he deserves. In actual fact, my mum fought to have my brother considering he was over a week late. My mum, so strong and so courageous.

Looking back, I feel so guilty for even thinking my mum never loved me, basing on my younger self tantrums. My mum’s loss made her stronger and more determined to protect her children and to support them. If I could go back in time, I wish I could tell her that I loved her more often but I can’t. I can’t change the past but the only think I can do is tell her that I love her everyday from now on, and do little things to show that I do appreciate her.

I know my mum depends on me a lot now. For advice on what to do as well as emotional support when it comes to my brother. When I look back to the day when the doctor told my mother and me that my brother had Autism, I remember her just breaking down, crying and me wanting to cry but didn’t. I had to be strong. And I’m going to continue to be strong. Not just for her, but for my whole family. I want to make sure that there is always hope, and make sure her hope doesn’t get diminished.

You never truly realise just how much you love you’re mum until she’s placed in a dangerous situation. I still remember the swine flu epidemic back in 2009 and how my mum just fell really ill. I remember coming home from school and her temperature was so high, that  if it was still staying at that high, she would have to go to hospital. I still remember seeing her in my parents room, with a wet towel on her head and her telling me this. And just like that, I broke down into tears, drops falling down on her and my mum telling me not to cry and everything would be fine. It was the first time in my life where I cried for my mum. I so upset, I thought I would lose her there and then but thank goodness I didn’t. And this was just swine flu. I couldn’t even begin to imagine how I would be if it was something much worse.

As I take these few baby steps into adult hood, I begin to realise just how precious mothers are. Without them, there would be no life. Without them, there would be no love. No one to care for us. And no one to tell us that we look beautiful even though we feel completely crap about ourselves and about our weight. But that’s just me.

I love my mum with all my heart. And I only pray and hope that I can be a mother like her to my own kids in the future. If I can be as half as good as she is, then I’ll be happy.

Happy Mother’s Day x

2

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?