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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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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

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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 🙂