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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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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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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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Babble away you 4 year old gymnast!

So yesterday I noticed that my brother was babbling A-LOT. And when I mean a lot, I mean constant ‘blahblahblah-blah-blahblahblah’. So I decided to have a conversation with him. I was afraid that if I were to use actual words to interact with him, he may stop babbling. I had the imitation theory in mind so I thought I’d just copy him, as if he’s teaching me to talk/babble. Even though I had NO IDEA what was being said, he continued to babble. And when I stopped babbling, he’d start off again. And so on.

I think its really great because it gives him a chance to in a way, interact and get him to exercise his muscles? o.o I dunno what would have happened if I had spoken to him with actual words so I’m thinking when he does babble again, I’ll use words and see what happens. Oh and really simple sentences like, ‘What are you doing?’

Another thing I realised that he does a lot are hand stands and roli-polies. The handstands that he does, he’ll basically put his head on the sofa and do a handstand whilst leaning against the sofa. And I think he knows that he shouldn’t be doing it because when you call his name or approach him, he’ll stop doing it and times he’ll roll out into a roli poli making you go all ‘Woah!’. I don’t know where he learnt it all from but it’s very entertaining 😀 I know for a fact that I couldn’t do a handstand till I was like 12 o.o But it is nice to see him be a kid. I think people need to realise that just because he has Autism, it doesn’t make him different from any other child. Yes, he CAN have fun just like any other child.

It’s honestly the best feeling in the world when I see him prove my point of kids with autism being able to act like any other kid :’)

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Shift into turbo! (Just a short update)

So I have a 4 soon to be 5 year old brother who may lack in speech but he can open the car door using the keys. Gifted? Yes I think so.

It was such a great day out yesterday! Mainly because of my brother. He somehow managed to put the car keys in the keyhole thing and with a little help, he turned the keys and unlocked all the car doors! And then he got in all by himself c: And his hat came off but he put it on- with no support^^ And once we were in the supermarket, he began to push the trolley! And then he got bored and kind of ran off and I ended up chasing him o.o

But by him just doing those things made my day! My smile became even bigger with the excitement of my parents just talking about it. It’s just those simple things that he does. Like it just makes you forget about the fact that he can’t speak yet and look way beyond that :’)

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Too many unnecessary words guys!

Children with Autism are known to have a very limited vocabulary.

This being said, when giving instructions or asking them to do something, ask them in the most simplest and most direct form. For example, don’t say ‘Hang it over there’. This will make the child with autism confused because to them, they don’t know what ‘it’ is, or what ‘there’ is either. They won’t understand the meaning of those words so instead, say ‘Hang your coat over by the door’. This would be so much easier for them to understand because they know that they have to put THEIR COAT by the DOOR. Children with Autism take things literally so the second example would make life so much easier for both child and parent/sibling/others. It’s simple, and directive.

But with my brother not being able to say actual words and just babbling when he does say something, even speaking in sentences seem useless. Sometimes, you think ‘Why even try?’, but the thing is, YOU HAVE TO TRY. Having a negative attitude will get you no where. You have to try, you have to be able to think and believe that if you keep trying, they’ll be able to understand. And soon, they’ll pick up on it. We were told by staff and others to say the word when performing an action. This is so that the child would be able to put the meaning behind the word. So when my brother comes up to me and puts his arms up because he wants me to pick him up high, I have to say ‘Up’. So the next time he hears the word, he’ll know what ‘Up’ is- maybe not straight away but perhaps in the near future. It’s situations like these were I feel as though using a word rather than sentences is better for him, so he’ll be able to understand a word rather than a jar filled with words he can’t relate to. (at this point, I don’t know if I’m making sense but if you understood it, 10 gold stars to you!- no sarcasm intended, I’m serious)

However, I sometimes think that maybe in some cases actions speak louder than words. For example, when I want my brother to come to me, I flick my hands towards me when I have his attention, and he does come to me and I hug him in return as a reward for him understanding. Though, times like these I don’t know what words to use. ‘Here’ is the one that comes to my mind but I still think that word would confuse him but I guess it wouldn’t hurt to try 🙂

I’ll end this post here. I’ll be honest, I can’t remember the point I was trying to make but I guess the point was, with and autistic sibling- don’t bombard them with truckloads of words they won’t be able to understand. Keep it simple.