Things that people say just make me..............

Hi,

So, mostly  being disabled is great. Like for example having that 5000000000000000000000 mile long queue at primark and I'm just whizzing past everyone and seeing the utter anger have the people who having being there for so long they are turning into primark zombies. LOL!  But Primark is bae doe hehe! 

So that's one of the positive of being disabled but there are always some negatives. For me, people saying little things that annoy me that I need to let the world know.

So here is the list:

1. 'OMG, let me help you!'
2. 'Are you ok'
3. 'Are you sure'
4. 'You're an inspiration.' (now this is only if I'm doing something that I do normally and if they wouldn't say that to a non disabled person if anyone understands that)
5. 'how do you do that?'

 These are just some of the things people have said to me or people I know. Most of these seem alright, don't they? yes is the answer. But the tone and the way you say things makes all the difference. It starts to become patronising-and that makes me angry. I mean I maybe disabled but I haven't got the mental age of a toddler.

Leave a comment if anything like this as happened to you.

Byeeeeeeeee    

I am Inspired by Kim

Hi,

Now this post is a post that comes from my heart because I have been involved with IBK for 2 years and I see the wonderful work they do when ever I’m going to a workshop or group or family tea etc. IBK is an organisation which helps include families with a young person who is disabled into groups for both child and parent and most importantly give them a voice to the outside world. IBK stands for inspired by Kim who was the founder of the organisation, Pippa Murray’s, late son-who was disabled. Having the experience of being   mum of a disabled person, Pippa knows that with the right support makes all the difference, so she started IBK.

Personally, I want to thank IBK for helping me feel confident in my disability and treating me like you would any other child. I feel I need to give a special thanks to Pippa, Gabriella and keria for having the drive and energy to help grow IBK into a thing that impacts so many people’s lives, because for some parents who care for their child most of the time, IBK gives them a well need break by letting the young person, no matter what disability, participate in the groups.  I feel like after a group the young people are happy and have felt included.

IBK is more of a community than anything else. You really feel this when you go to a family tea, which are held every 6 to 8 week. As soon as you walk in the room there are people chatting and eating curries and pizza. (Not together who would eat that- well Shaun does sometimes. He is a PA to someone by the way!) Anyway the word community sums up IBK  as a whole: the trips, the groups, the families, the people who volunteer and the full time workers all come together as a community, simple yet it changes lives.

Check out the website: http://www.ibkinitiatives.com/home

Check out the face book page: https://www.facebook.com/pages/ibk-initiatives/216536255044626

Byeeeeeeeee

LEGOLAND !!!!!!!!!!!!!

Hi,

So the reason why I didn't post this on saturday was I wanted to get the best possible first hand information,which came a little late- but at least you're getting a post. Do you guys remember my post on 'Ron'? Well since it's the summer his Grandma, let's call her 'K', has took him to LEGOLAND. (lucky kid) Anyways, she was telling me how the staff reacted to his autism.

When I asked 'K' how did the staff treated 'Ron' she told me," once we were in LEGOLAND the staff were really great. We didn't have to queue to get on things and the environment was really low sensory. it would have helped to have wrist bands but once we had told a few people 'Ron' had autism they made sure that all the other staff knew about him and also knew his name, that helped loads." I think that it's very important that tourist attractions go the extra mile to support, not only the disabled child,but the Parents and carers too because it can be very stressful for the carer/parent constantly trying to keep the disabled child as calm as possible in an unknown environment for them,so just the staff making the child feel safe is a massive weight of the adults shoulders.       

I then asked how 'Ron' reacted to being in a new environment and how did the staff help 'K'  said  " 'Ron' was quite anxious anyway and quite aggressive as he always is in new places but the staff helped a lot because they  understood and didn't bombard him with questions. they seemed to really like their jobs and children and that is essential with 'Ron'. It is really the first time we have been in a cinema and 'Ron' has actually been able to sit still for a period of time. We watched 4d movie which was about 15 mins long and it was awesome." Again I feel that disabled children feel more at ease when the people around them are calm.   

Finally I asked her if any improvements could be made,what are they? and 'K' answered  "If there was anything that they could do better the two things that i would say are 1) wristbands to identify autism or other issues so that a conversation doesn't have to take place between parents/carers and staff to get them to the front of the queue. 2) letting people with disabilities in without having to queue at the entrance. This was too hard for all of us." I think these ideas should be adapted to the experience so for disabled people its more enjoyable.

tell me what you think in the comments. 

byeeeeeeeeeeeeeeeeeee

Yikes or Yay...........

Hi, (Yes my friends I'm changing my intro,sorry!)

Firstly, yes I know I haven't been online for 2 weeks. I have just finished my first year at secondary school and I wanted a little bit of time off from writing and enjoying spending time with my family. But I'm back now so yayyyyyyyyyyyy!!!!!!!!!!!!!! 

This is more of life update then a disability blog because on Monday I am having a minor operation (so don't worry) on my right leg and arm (that's the side which my cp affects) and I think you guys should know.

So whats happening on Monday?

Basically they are going to put me under general anaesthetic and put Botox in my calf muscle which is tense,because of this my right foot is turning outwards and that's impacting the way I walk. As for my arm/hand, they are putting it in my tricep to relax my arm and I'm not to sure where they are putting the Botox in my hand but the end result will make the muscles less tense. this operation will also determine what operation/s I might need in the future. 

So thats what happening in the next few days for me - wish me good luck  

byeeeeeeeeeeeeeeeeeeeee