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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.

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!

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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

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Volunteering!

Today, I volunteered at this centre which allows parents with disabled children come in and keep an eyes on their loved ones whilst they play. The main part of my job is to play with them and to supervise with them. This scheme runs 3 days a week, during term time. I heard about this from my best friend who volunteered during last term and I thought it would be really cool to do it too! Today was my first day and I’ll have to admit, I was as nervous as… anything.

I arrived probably 10 minutes before we were to start and arrived in a middle of a pep talk given by the scheme leader to all the volunteers. She then introduced me to everyone and bam, I was left to fend for myself. She basically said that everyone needs to be at different stations so I stuck to the one closest to the door, the ball pit. It was a bit awkward at first because no children were going in and was just left standing there, and looking around. When a child did go in, I didn’t know whether to interact with them or anything because.. I don’t know really. And then 15 minutes later, I got moved to another station. And I got moved to the bouncy castle. And I think it’s from the bouncy castle is when I started to get a bit comfortable. Because something just clicked in my head.

I thought “eh, I’m just gonna do my own thing,” and then started interacting with the kids and being all silly, I mean why not you know? I thought at first, it’ll just have to be just supervising them because a few other volunteers were just sitting there and I thought, let’s just copy them. But come afternoon, it completely changed and by the end of the day, I was completely drained out!

There was this one boy, I can’t remember his name but I think he had severe cerebal palsy? Not sure, because I don’t exactly know but he did have trouble walking and sometimes he would have to crawl and he was playing on his own and I just felt really upset. All the kids were playing with eachother and here he was in this one room, playing on his own. I then saw him trying to go to another room so he grabbed a hold of my hand and I took him into this room with a CD player and I sat with him, and saw him putting the CD in and taking it out repeatedly whilst saliva was coming out of his mouth. Obviously I wiped it for him. Even though he was just doing the same thing over and over again, I just felt like I had to be there because no one else was. I didn’t want to leave him alone. Also, he tapped my head at one point and was smiling and that kind of touched my heart a bit.

I had to go to the toilet because I get a bit… OCD when it comes to germs and such and because I was wiping his saliva and a bit got onto my hands, I really needed to wash them before I lost my mind and there was no one else around so I quickly went to the toilets which weren’t far. Whilst I was in the toilets washing my hands, I felt incredibly guilty for just leaving him alone so I hurried back but then I remembered, in the video games room, some boys were fighting over the Playstation and I did tell them that when I came back, thats when they had to swap. So I went back, sorted that out and yet, when I came to check on him, he was gone. I asked my best friend where he went but she had no clue but we assumed that his mum came over to pick him up.

Even though this happened, I just felt incredibly guilty. I know it’s not my fault but it’s the fact that he was alone, and I left him alone. Like who knows, the whole day he was probably playing alone. When the guy with the reptiles came in, most of the children and parents gathered round to see them but when I got told to kind of supervise the back rooms and saw him playing on his own, I just felt… upset. But there was nothing I could do but get on with my job so I did but I knew that it was something I’d remember for a while.

I spent the afternoon staying away from the reptiles and back to the ball pit, where I interacting with this girl and her brother. Her brother had cerebal palsy in his leg, and he even told me that too and I was surprised really- the fact that he told me considering I was the newbie. I wanted to think of something witty to say, something that would make him feel better but in the end, I came out with “Let’s see if you can chase your sister in the ball pit,” and he did. It was great. We hid things in the ball pit and took turns to find them, we pretended to be animals stuck inside, they wanted me to push them in so I did, it was great fun! They were one of the last families to leave and you know when you made an impact of a little child when they come up to you and hug you tightly, asking whether you’ll be back on Thursday. And it just made my whole day. And I honestly can’t wait to see them again.

I think there are some aspects of the day where it did hit me hard and I did find it uncomfortable. What I found most hard was dealing with children who had conditions which I didn’t know how to handle. And seeing some children play alone. Another thing that I found hard was socialising with the other volunteers. Sure, I was able to socialise with some but I think there are a few which maybe I could have made more effort but my shyness held me back? Maybe they were shy themselves and held themselves back? I don’t know but I think when you’re comfortable with those around you, that’s when your at your best, and that’s when you enjoy what you do. Tomorrow, I will definitely make a greater effort with the socialising with the other volunteers.  Despite this, there were good times and I can’t wait to go back tomorrow and revisit them.

Tomorrow, I’m donating a toy bike to them. It belonged to my brother but he doesn’t use it any more. To be honest, he never really used it in the first place. It’s still use able and robust but the fact that I’ll have to carry it with me tomorrow and take it in is a bit nerve wracking. Like, i’ll just turn up with a car and everyone’s just staring at me and I’m like “PLEASE, I SWEAR I AM NORMAL I AM JUST DONATING A TOY CAR FOR THE SAKE OF THE CHILDREN!” Q~Q

I hope they take it in though o-o I don’t want to carry it back to the car!

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?

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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