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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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Liebster Blog Awards

A few days ago, my blog had been tagged by the very awesome aspertypical for the Liebster Blog Awards. Thank you so much! The Liebster award is given to up and coming bloggers who have less than  200 followers!

There are a few rules to this though and that is:

1. Give 11 random facts about me.

2. Answer 11 questions that the tagger gave me.

3. Make 11 questions so the people that I tag have to answer.

4. Tag 11 blogs that are new or have less than 200 followers (Not exactly a rule but I guess you can guesstimate?)

So, 11 random facts about me:

1. I love to read dystopian novels.

2. I write in my free time and post my stories on a website called Wattpad.

3. When I was 6, I used to play under a chair and pretend that was my house o-o (please don’t ask why)

4. On one occasion whilst playing in my ‘house’, my mum was calling me and I got up immediately making me hit my chin on the wooden bit on the chair. Ended up in hospital and a mark for life to remember the occasion by.

5. When I was 7, my cousin came around and we were at the top of the stairs. She wanted me to carry her down and I was scared of her back then so I carried her and after one step, we tumbled down.

6. I always used to draw all over my legs when I was younger.

7. Maths is my mortal enemy.

8. I adore Disney films.

9. Backstreet Boys and Westlife are my guilty pleasures.

10. I over think things.

11. Four is my favourite number.

Tagger’s Questions:

1. What is your most embarrassing moment?

I had an exam in college and I was walking with my friends and I suddenly tripped over, with everyone just staring at me. A few minutes before the exam, not so good. My face was burning with embarrassment!

2. What’s your favourite topic to blog about?

Well, I guess it’ll have to be the shennanigans my brother gets up to because at the end of the day, he is just a typical 5 year old, despite him having autism.

3. Do your friends, family or work colleagues know about your blog?

Only my family.

4. What are you currently reading?

Divergent by Veronica Roth.

5. What are your aspirations for your blog?

Well ideally, I want to create a sort of community so other people would be able to share their experiences and contribute 🙂

6. What was your first gig?

Gig? As in opportunity or gig as in concert? First concert? Haven’t been to one yet D:

7. What would your dream job be?

Speech and Language Therapist, Journalist/Writer, Author, Publishing?

8. Do you have a guilty pleasure?

YES! Backstreet Boys and Westlife! Oh and I should add NSYNC to the list.

9. What is your biggest regret in life?

Pretending to be someone I’m not.

10. What do you deem to be the biggest success in life?

I don’t know really because I’ve only lived 18 years so not sure! Maybe…

11. What is your favourite film?

The Avengers 🙂

New Questions:

1. What advice would your give to your younger self?

2. Other than your dream job, what would be your alternative?

3. What your favourite meal/food?

4. Any fears?

5. If the world were to end tomorrow, how would you spend your final moments?

6. Best school/college/uni memory?

7. Do you have a secret/freaky skill/trick? If so, what is it?

8. What’s your favourite drink?

9. Best childhood memory?

10. What’s the first thing that comes to your mind when I say “blogger”?

11. If you had the opportunity to produce and make a film based on a book, which book would it be and who would you cast as the main character?

11 Bloggers I’m tagging and why:

1. AutisticallyBeautiful

A mother of an a daughter with autism who shares her experiences and thoughts- ones which I find very interesting!

2. AutismAndOughtisms

A mother and her take on parenting and Autism. Very informative and thought provoking 🙂

3. thatawkwardkid93

A personal look on life from someone on the spectrum!

4. LifeAtMyHouse

This blog has a great sense of humor! And awesome stories 🙂

5. AspieWarrior

Outlooks on life from a 46 year old father with Aspergers.

6. AutisticAndAwesome

A really quirky and fantastically awesome blog!

7. storiesofayoungvolunteer

She’s great, and she’s awesome. And her blog is filled with voluntary wisdom!

8. sparklyandslimming

A very motivational weightloss blog from a very inspiring lady!

9. emmashopebook

Blog written by two parents about their day to day experiences with Autism- This blog constantly brings a smile to my face. Definitely a HOPE blog!

10. capturingautism

A mothers inspirational take on autism, definitely a blog to check out!

11. aspertyical

I know she tagged me but I just have to include her! I really really love her blog, and her perspective on things 🙂

2

Another through the eyes of my own.

Long title, but I felt some what enlightened  wordy today.

On Thursday, I finished my volunteering placement and honestly, it was really great. I’ve met a lot of people, and I’ve come across a lot of children, many of whom have disabilities and whom have made a lasting impression on me. There were these two twin girls and both came in with their mum on all three days. During the first two days I noticed signs of flapping, and no eye contact and one of the twin even  mumbling a word or a phrase over and over again. My mind instantly flashed ‘Autism’ but I didn’t want to make judgements nor jump to conclusions but as I was interacting with other children whilst they were near, it was apparent that they were- and I am not saying this in a total judgemental way like everyone who does this have autism but because I kind of compared their behaviour to my brothers.

During the second day, I was in a room with one of the twins who stumbled across an ‘In the Night Garden’ jigsaw and she sat down, completing it whilst uttering ‘Makka Pakka’ and ‘Upsy Daisy’ (both characters from the show). Her mum then came into the room, looking for her and she was really nice, it was the first time I saw her. She quickly told me that both her daughters had autism and their latest obsession was In the Night Garden and I couldn’t stop smiling throughout. I haven’t come across another child or anyone for that matter who also had autism. What made me smile even more was the fact that they were both the same age as my brother. Their mum even told me that they’ve begun to mumble the names of the character even though she’s been trying to get them to say mummy or daddy and it’s here were we both cracked up in laughter.

It’s amazing because looking at both of the twins, their behaviour is really really similar to that of my brothers however, they’re very different too, with speech being the main concern. They were able to mimic whilst my brother can’t. They would play with toys that don’t exert sound, my brother only plays with toys which make sounds. I couldn’t stop smiling throughout the day for some reason. Throughout the day, I tried to make attempts to see whether they would respond to me but they didn’t which I was completely fine with. However, something happened on the last day of my placement.

On Thursday, I was instructed by one of the play leaders to supervise a station which had this big inflatable slide which you had to climb and then slide down to. It also had these big plastic wobbly bits to run through and a ball pit to jump in and get out of, kind if like an obstacle course. Diverting a bit, I was so scared to climb on top, I didn’t so big floaty slides but I thought ‘what the heck?’. It took me THREE attempts to get to the top, whilst it only took the kids one try. I had to sit at the top and see that the children got down the slide slowly. So there I was, doing my thing whilst interacting with one of the children when suddenly, one of the twin comes up.

At first, I say hello and naturally she didn’t even look up, she just slid down. When she came back up again, I thought I’d try something different. I don’t know, I guess I wanted her to respond. With my brother, it was easy because of all the intensive interaction but meeting someone with the same condition and being the same age as my brother, I knew that she wouldn’t respond but I don’t know, I was intrigued I guess. So as she went down, I yelled out ‘WHEEEE’ and as she hit the bottom, she looked at me. She actually looked at me. When she came back again, I did the same thing, and she laughed and looked at me again. The third time around, I yelled it again, she laughed and looked at me but before she slid down, she yelled it too.

And I don’t know, words couldn’t describe how I felt but simply put, it made my day.

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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?