A day in life of a young carer - Friday 30th June

I've been excited about today for weeks! I was meant to be meeting up with my best friend. It is a rare chance for me to escape and be a normal teenager. Recently Mum's feet are giving out even more, now she cannot walk properly, when she is not using her wheelchair, but rather waddles like a penguin. This worries me more as I don't like to see her struggle to do the things she could do a few weeks ago.

Today instead of the planned going for pizza, then go and watch a film, it has been cancelled. This happened this morning and was called off, for unknown reasons. Being let down is hard for anyone, even harder for a young carer. Going out is a big deal as it's our chance to be a normal teenager for just a couple of hours. A chance to put to the back of my mind my worries and enjoy being young.

Today hurts.

Written by Rhiannon

Young Carers.

Hello everybody. I want to apologies for being missing for a couple of months I have been busy with family and school. I am working towards my GCSE's at the moment.

There is a matter that is close to my own heart at the moment, I'd like to talk about. We currently do not have a local Young Carers support worker at the moment.  She has left to pursue a career in a different role. This was really hard for her, but there is not enough money for her to work full time and support us young carers.  The company that runs our young carers has not yet organised a replacement.   This has left me feeling quite vulnerable. Mum has been having some issues adjusting to the boots. She frequently falls over when she tries to pick something up. Whilst this actually looks quite amusing, I sometimes laugh. This is to cover up it really does worry me. I am worried about the fact she might really damage herself and not get back up. She already dislocates her knee cap on a regular basis. Just sometimes I wish I could just escape from the worry of it all. I used to be able to do this on the young carers trips. It was time to do things where I wasn't worrying about whether Mum was being left out, because the place we wanted to go to wasn't fully wheelchair accessible , or even accessible at all. It was also someone we could talk to that understood. Whilst we have someone in school, I don't always want to talk to them, because they don't know Mum and cannot totally understand the situation. Like her being a stubborn moo. She does not always want help. 


We have not heard when there will be a replacement, we've had no communication from them. It feels they have left us alone. 

Has anyone else in other areas experienced similar problems?

       

Paralympics!

Hi everybody. As we are counting down towards the olympics and Paralympics, I've decided to do a post on paralympiams and will share a couple of stories. 

Tatyana McFadden.

McFadden was born in Lenigrad, then Soviet Union, on 21 April 1989. She was born with spina bifida, a congenital disorder that paralysed her from the waist down.

http://www.theguardian.com/sport/2012/aug/19/tatyana-mcfadden-paralympics-wheelchair-racing.

In my opinion, she is a very inspirational person. The link above shows all her successes, I hope that from you reading this it will inspire you to not give up on your dreams. Thank you for all the support and I will keep you updated. 

Non blue badge holders parking in disabled bays.

From previous days out with the family, I have been coming across the issue of people who aren't blue badge holders keep parking in disabled spots. http://www.disabledmotoring.org/news-and-features/news/post/9-blue-badge-ruling This post clearly states that if you do not have a blue badge or have forgotten it and have not contacted the operator you can get fined, in some areas. Another thing is the fact that some partners who have a disabled partner/family member are not allowed  to use the badge unless that person is in the vehicle. 

      I as well want to bring to you supporters that we have a estimated date of the boot fitting, but are not yet sure what time and as well we have found a car solution and keeping our fingers crossed everything will go okay. Thank you for all of your support and if you have been witnessing any of these issues please do not hesitate to contact me on disabilityfriendly@icloud.com 

Blocking the drop curbs.

Hi guys, for a starter I want to thank you for the support from everyone, on my Facebook page http://www.facebook.com/disabilityfriendly and on here. Today I was doing some reading around ta blog that are trying to raise awareness of people blocking drop curbs which affect the disabled as well as mothers of young children.

      

I've decided to have a look at this topic myself. I have found some interesting sites such as this RAC one http://www.rac.co.uk/forum/showthread.php?7181-Blocked-Dropped-Kerb-for-Wheelchair-access .  This is a strong issue that people don't seem to notice. In my local area this is a huge problem, which affects Mum. This is because people will park across them as if there is none there. What they don't realise is they are blocking the rights for disabled or even mothers  with prays / pushchairs to have freedom.

     

If you guys have had any of these issues please don't be afraid to email me about it or get in touch with http://www.disabledgo.com/blog/2016/01/get-involved-with-our-dontblockthedrop-campaign/?utm_source=DisabledGo+Blog&utm_medium=facebook. 

Thank you all and I will try and keep you updated as much as possible.

Welcome.

Hi everyone, my name is Rhiannon and I’m 14 years old. I live with my Mum and Dad and my younger brother who’s 11. My mum has Postural tachycardia syndrome (POTS) associated with Ehlers Danlos Syndrome (EDS). The affect this has on her is, means she now has to use a wheelchair and sometimes that means she can’t get in shops or places easily, if at all. This affects me as well. I can’t do most thing I want to do, such as mountain climbing, long walks, mother and daughters day out.

    

We can’t get into a lot of shops, especially in our local town of Cardigan. I would love to do the things with Mum she used to love doing. Such going for walks, up in the hills, through the forest or even on the beach. Due to the need for expensive equipment she cannot do this. Also a lot of hotels or restaurants don’t have access or toilets, same for cafés and some pubs. She misses being able to do those things easily or at all.

    

My main aim is to raise awareness of mental and physicals disabilities because I don’t like the way some people treat them. I would like to achieve this by letting their voices be heard. I would like to share their stories on this blog. I would love people to do a short video of how they go about their daily lives, I hope to set a YouTube channel up for this. Perhaps showing how inaccessible or even accessible your area is. After all, raising awareness is about showing others how to do it right as well as showing what is wrong.

    Do you have a story share? Are you a company that goes out their way to help accommodate disabilities or any suggestions? Please email on disabilityfriendly@icloud.com