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Meet our community champions

AlexAlex Posts: 1,327Administrator Scope community team
We are really fortunate to have a fantastic team of volunteers helping us run the community. Our ‘community champions’ come from all walks of life – some are parents, some are professionals and some are disabled people. They have all volunteered their time to make sure the community is a safe, supportive place to be, so we are hugely grateful to them.

Replies

  • NikiMNikiM Posts: 36Member Whisperer
    Hi my name is Niki and I am mum to a wonderful 10 year old girl with severe Dystonic Quadraplegia (as well as two equally fab younger children, aged 7 and 5).
    My daughter is a wheelchair and communication aid user and attends a mainstream school. I have been involved with Scope for a number of years and am currently an Assembly Member (advisory group of service users). I am really excited about the launch of the forum and being able to converse with other families experiencing the same trials and tribulations as mine. I hope to get to know as many of you as possible. I know from being an Assembly Member how powerful we can be as a collective voice.
  • Natasha BrownNatasha Brown Posts: 110Member
    Hi I am Natasha and I am a workingoutofthehome single parent with three children. The oldest (17), currently still at full time special school, was an undiagnosed baby/child with hypotonia, motor delays, developmental delay, severe LDs, etc.... ASD (diagnosed age five), no verbal speech...more recently he got the genetic diagnosis of a chromosome microdeletion syndrome. He is a sociable young man who likes long walks in urban streets, and spending computer time on google maps streetview; looking at family photos/videos; and watching youtube/cbeebies. He uses an ipad running Gridplayer to communicate by typing words and phrases for his wants/needs/to comment. I am a big fan of communication aids/AAC.
    My teen daughter has coeliac disease and has issues with migraine and dizziness but no LDs. My "tween" daughter has hypermobile joints but no other issues!
  • NoahNoah Posts: 430Member Chatterbox
    edited July 2014
    Hi Everyone!

    Really excited about the new SCOPE forum and so hope that it makes a big positive difference for so many people.

    I'm 32 years old and have had CP all my life, I'm extremely fortunate to have a great family and very supportive friends, and access to some of the best professionals that have helped me achieve so much, despite so many at the start saying, much would be impossible.

    Its all about sharing things that we have found to have worked for us, so we can all hopefully have the very best life possible.

    Also this is great place to hopefully inspire each other, to carry on and achieve great things, not all of us can be in the Paralympics, but we can all be a Paralympian at heart.

    Looking forward to reading some of your experiences

  • abstractLucasabstractLucas Posts: 79Member Whisperer
    Hi everyone *waves*
    I'm Lucas, and I have three children. Smiler is 12, Noah is 11, and Petal is 10, and we live in Bristol. Smiler was diagnosed with a unique chromosome disorder at birth, and although his prognosis was extremely poor, he has surprised everyone with both his (relatively) good health and his development. He has SLD and complex health issues, including a jaw that is prone to dislocating when he yawns (!), and an incredible sense of humour.
    I'm involved with a participation forum in Bristol, which means I get to stick my nose into all sorts of meetings and organisations to try and improve provision for disabled children and their families in Bristol, across social care, education and health.
    Something that I've found is that it is often through casual conversations with others that I've had the best advice for managing behaviour, the best recommendations for equipment and toys, the best ideas of places to go - we all have so much knowledge to share, which is why communities like this one are so valuable!
    So, that's me, and if anyone wants to ask anything please feel free - I'm pretty chatty most of the time - the difficult bit is getting me to stop!
  • socksoffsocksoff Posts: 32Member
    Hi, I'm Jacqui the mother of an 11 year old boy with autism who is going to secondary school in September. He goes to special school as he also has severe learning difficulties and a speech and language disorder but he's lovely! I also have a 15 year old daughter who is fantastic with him and goes to mainstream. In my spare time I work in teacher education for special needs and I am currently researching for my PhD looking at the experience of transition for young people with autism when they leave special school and go on to mainstream college post-16. Would be very happy to hear from anyone about their experiences but also enjoy the moral support of forums when I run out of ideas on how to manage behaviours etc! Really warm welcome to everyone.
  • NaomiNaomi Posts: 29Member Listener
    Hi everyone and welcome. My name is Naomi and I am the mum of Jack who is sixteen years old, has global delay, epilepsy, addisonians disease, septo optic dysplasia, and is non verbal. We are currently facing transition and big questions like should he move away from home to go to college and how do we build the best life for him as a young adult. I am busy telling myself that as provision has worked out well for him so far that will continue!! I am also the mother of Lily who is thirteen years old, and Isabel who died from a life limiting condition when she was a baby. I work as a freelance financial journalist when I am taking a break from the special needs world.
  • YoungCarerOverHereYoungCarerOverHere Posts: 50Member Whisperer
    Hi, I am Catherine and I'm a fourteen year old young carer to my younger brother and sister. My brother has ADHD and autism whereas my sister has Oppositional syndrome (I believe that's the correct term). I am part of the Young Carers Association and I know how taxing it is emotionally to care for another person. If anyone has any questions regarding caring or would like any advise whatsoever I will try my best to help. :)
  • RosemaryRosemary Posts: 11Member Listener
    edited December 2014
    Hello, my name is Rosemary Frazer and I am the Campaigns Manager at Scope. I have joined the community because as a wheelchair user and a campaigner I believe the only way we can change attitudes and improve lives is to talk through and resolve the issues which affect us all.
  • Zec RichardsonZec Richardson Posts: 133Member Chatterbox
    I'm Zec, I'm in my late 40's and I was diagnosed with chronic fatigue in 1997 and after knee replacement in 2010 I was left with complex regional pain syndrome.
    I'm a wheelchair user because of pain, but also because my shoulders, wrists and hands are damaged from many years of using NHS crutches.

    I now blog regularly about disability, life in chronic pain and reviews of motability products.

    I believe that communities like this are more important than ever, the disability benefits that we rely on are under attack and our NHS is under threat. Individually we are vulnerable but together we are strong. Also the social interaction on here's crucial as we can feel very isolated even when we are amongst family.

    I will try to help where I can and if I'm unsure I will try and find the answer.
  • JgeekJgeek Posts: 68Member
    edited September 2015
    Hi All I’m Jess,
    I have lived well over half my 26 years trying to ignore my Cerebral Palsy. What a statement in this context!

    I dealt with prejudice by trying to give myself new identities; I loved learning and was keen to share ideas. I looked for interests such as music that I could be passionate about in areas where my CP was not a consideration.

    I have 3 degrees in mathematical science and lived away for all 3. I suddenly needed to organize care, wheelchairs and room adaptions myself.

    I am no expert, there is no right or wrong way of coping, it’s a bumpy road but I’m here to help you, any questions, advise requests I’ll try to get back to you.

  • Richard_ScopeRichard_Scope Posts: 1,091Member, Administrator Scope community team
    Hi, I'm Richard
    I am a dad with Cerebral Palsy trying to juggle life as we all are. I work at the University of Warwick in admissions and I am passionate about people with disabilities accessing good quality higher education. I have worked in many industries and would be keen to share my many life experiences and advise where I can.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • SofRochSofRoch Posts: 22Member
    edited September 2015
    Hi everyone,
    My name is Sofie and I live in North Lincolnshire with my family including my beautiful Jack Russell, Arty. I was diagnosed as having Dyspraxia in childhood. As an adult, I've been diagnosed with Asperger syndrome and chronic OCD. I am currently an online moderator for the National Autistic Society so I'm interested in supporting people with disabilities. I hope that I can continue to help people within the Scope online community and provide much needed support for people with disabilities.
  • anamaniacanamaniac Posts: 12Member
    Hi Guys
    My name is Gemma and I have recently signed up to be a Community Champion for Scope.
    I am currently working as a PA but my lifelong dream is to work in social care. I am in the process of gaining some well earned skills and experience and trying to get qualified and have spent a lot of my life helping others in different situations as well as raising money for charity all the time.
    I really want to be a way for people not to be scared to reach out and ask for help when they are struggling. Don't suffer alone, as they say, and I totally agree.
    I will be happy to help no matter what way I can, even if it is just for a talk to get things off your chest.
    Hope to catch up with you at some point in the future :)
  • htlcyhtlcy Posts: 131Member Chatterbox
    Hi there! My name is Heather and I live with right-sided spastic hemi, a spinal curvature (scheuermann's kyphosis) and mixed anxiety and depression. I am currently studying for an MRes degree in the UK looking at explorations of physical difference in literature. I am passionate about providing support and help to others, and I really hope I will be able to help in any way. I look forward to contributing to this fantastic online community!
  • EmmaFarrellEmmaFarrell Posts: 10Member
    Hi everyone, my name is Emma.
    I was previously studying to be a physiotherapist when I became unwell with a condition called POTs, as well as migraines with auras and suspected JHS. I have lived with these conditions for almost 2 years and while the severity of them fluctuates a lot, I have had several periods where they have severely disabled me (wheelchair/housebound).
    I am passionate about disability rights, awareness and invisible illnesses. While I am by no means a expert, I hope with my personal and professional experiences I can help and support others in need. I am looking forward to talking and listening to all of you, helping in any way I can and being a part of this wonderful community.
  • MaryBMaryB Posts: 11Member
    Hi! I am a Science and Psychology teacher for pupils aged 11-16. I have an Advanced Diploma in Special Educational Needs and have just started work as a governor for a preschool for children with additional learning needs. I have both a personal and professional interest in Special Educational Needs and am passionate about improving the rights of disabled children and their families. I am looking forward to assisting the Scope community in any way I can.
  • JenniferUJenniferU Posts: 124Member Talkative
    We have some new champions to add to this lovely list, who will be introducing themselves on here soon...
  • Blue FrogBlue Frog Posts: 373Member Chatterbox
    Hi, I have been here a couple of years but not written a profile (oops!)

    I'm a single mum to a fantastic little girl who has severe global developmental delay and a collection of seemingly random complex health needs - she is a little star!! We are just going through genetic testing to try and work out what's going on, though I adore her just as she is and have mixed feelings about potentially opening that can of worms.  

    I also help care for my younger brother, who is in his early 30's and has autism and epilepsy - there is never a dull moment in my life! :)

    Before I had my little girl, I worked with disabled children so have been in the world of disability a long time - but love being part of this forum because as well as having the chance to share ideas I have come up with, it's a brilliant place to meet other people and get help as we often feel on our own caring. 
  • milomilo Posts: 165Member Chatterbox
    Hi, I'm Andy. I'm 41 and married with 2 teenage stepdaughters. I have left side hemiplegia and am a full time wheelchair user. I enjoy a very active lifestyle and am passionate at addressing the inequalities those with both visible and invisible disabilities face every day. I look forward to getting to know you all over the coming months.
  • Katymary321Katymary321 Posts: 17Member
    Hi everyone. I am not sure whether i qualify as a Champion but I do have years of experience. I am mum to 2 beautiful children. My eldest is nearly 12 and he has a cheeky grin and is full of mischief. He gives me lovely kisses and cuddles. He also happens to have Downs Syndrome and a severe learning disability and hearing loss and is also in remission from West Syndrome (a serious type of epilepsy). He is completely non verbal and regularly exhibits very challenging behaviour such as hitting vulnerable people and children and banging his head on hard surfaces when frustrated.

    My daughter is 9 and she just adores her brother. She is just so good with him! It's hard sometimes to get the balance right between giving both children the kind of attention they each need. My husband is marvellous with the children but he works long hours and so we employ two PAs through Direct Payments. They have been a huge help and allowed me to spend time with my daughter doing normal things like watching TV together or reading to her!

    My mum was also fairly recently diagnosed with Huntingtons Disease and is now in the very late stages. Mum is bedridden and she and my dad live with us so we try and help out where we can. There are also other considerations as it is a disease which is genetically inherited so I have to decide whether to get tested or not. My children may also have it but they will eventually get the test but only if I test positive. It is a disease which is often 'swept under the carpet' so if you have any connections with it and want to talk you know where to find me!

    Although I like to think I do my best, I am not the dream parent and have good days and bad like anyone else. Sometimes I can get very down and just dream of having a normal life, whatever that may mean! Life is often like being on a roller coaster (and I hate roller coasters!) If anyone out there reads this and feels they would like to get in touch then it would be great to talk. 

    Looking forward to hearing from you....
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