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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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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.

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Never Gone..

Hooray for a Backstreet Boys reference!

It’s been a while, and I feel like now is a good time to pick up from where I left off. A lot has happened since the last post and I hope you silent readers haven’t missed me too much! (joke). I have so much to say and I really don’t know where to start.

How have you all been?

My first year of university just whizzed by and I’ve been off for almost three months, just hopelessly looking for a non existent part time job to keep me busy during my time off from uni. My brother who is now 6, going on to 7 has just finished his school year and will be going on to Year 2 this coming September. He’s going to be in the same class with the same teacher and when my mum first heard this, she panicked a bit because she thought he was going to be held back but luckily, we got this clarified.

And yes, my brother is still non verbal.

On the last post, I mentioned that I had hoped that 2014 would be the year where my brother would improve his understanding or even his speech and I think I can honestly say that there have been some improvement in regards to his understanding. In regards to his speech, there’s been a tiny bit but I think I’ll make a separate post on that. Actually, I’ll just make a separate post on everything that’s happened since my time off from this blog.

I’m hoping that from now on, I’ll be active on this blog because now that we’re both growing older, I think it’s important to record these things because later when we look back, it’ll be really interesting.

I’ll sign off from here for now and work on a few posts for next few days!

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thank you.

happy new year!

heads up!

this is going to be my last post. i don’t know when i intend to write in this blog again but for now, i’m not going to be writing in here for a long while. reason being is that there is so much going on right now- i’ve just started uni and i have piles upon piles of assignments to go through, and i’m trying to pass my driving… doing all adult stuff.

my brother is doing fine, he’s still non verbal but we’re trying, every day. I feel like his understanding has improved and he;s saying ‘no’ more to things he doesn’t want to do. i love him so much and i hope that this year, theres more development to come.

i’ve taken the decision to stop writing in this blog but, i’m not going to delete it because there maybe someone in the same position as i was/am and they may come across this blog and this may help them, i don’t know. i’ve loved writing in this blog and sharing my experiences with you all and if i’ve helped at least one person, that’s completely fine with me.

if you’ve noticed i’ve taken down the facebook page as well- i’ve deleted it since i didn’t use it a lot anyway.

finally, i want to say thank you for all my silent readers and to those who’ve dropped an odd comment or so. times are hard but no matter what the challenge, get through each day with a positive mind set. love each other and help others.

thank you.

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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!