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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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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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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!

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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?