I am my mum’s carer by Alfie, aged 6.
Alfie, aged 6, talks about his role as a young carer, looking after his mummy.
November 9 2019Read Blog
Celebrating autism and neurodiversity!
For us, there’s so much to celebrate and so much happiness that comes from being around autism and neurodiversity. Richard Nurse, founder of the digital visual timeline app, picturepath, recently asked through Quora ‘why it’s so hard to find the positives in autism?’ Here are some of the great answers he received… “I think it …
November 21 2019Read Blog
Visiting the doctor or hospital shouldn’t be that difficult – a few simple changes can make all the difference
By David Bara MEd PGCE BA(HONS) and UN SDG 3 champion. A visit to the doctor or hospital can be challenging if you are relatively healthy but if you are taking a child or adult with additional needs, have access issues yourself, need to juggle multiple appointments or to plan your transport, etc. it can …
November 24 2019Read Blog
Social Situations – teach your child how you want them to react.
by Paul Rose of YouTeachMeToo There comes a time when you have to decide: accept the status quo or take positive action. For 12 years I worked in UK schools, including a few years as a headteacher. Despite running a ‘successful’ school, I decided I could no longer watch young people being failed. So I …
November 27 2019Read Blog
From Cancer to SEND – a bumpy journey of acceptance.
It can be hard to transition from being a cancer family to a special educational needs and disability family. This is one family's story.
November 30 2019Read Blog
Hospital Play Workers, more than just a bit of fun!
by David Bara You might call them play workers, they are the people who you’ll find doing fun things in the hospital play rooms or who come and visit you by your hospital bed with armfuls of stickers, but did you know their proper title is likely to be Health Play Specialists (in the UK) …
December 21 2019Read Blog
Autism and Accessibility
by Adam Barrett, Access Social Ltd. Being an older brother I have always been very protective of my little sister. (there’s 4 years difference between the two of us) This protectiveness has definitely been increased to biblical proportions due to her disability. Look at her the wrong way, use inappropriate language in her presence, I’ll …
January 22 2020Read Blog
Discovering Ehlers-Danlos Syndromes
Caroline Bailey talks about her journey to discovering she had Ehlers-Danlos Syndromes (EDS). When I was a little girl I was a little quirky. I remember walking to school with my brother and my mum saying “if you stand on a crack you’ll marry a bat and a rat will come to your wedding” 😂😂. …
February 3 2020Read Blog
Diagnosing Ehlers-Danlos Syndrome
Hi, my name is Caroline Bailey and I have Ehlers-Danlos Syndrome, a rare and difficult disease to spot . I and 48 years old and have been married for 25 years. My 3 children are Samuel age 24, Robyn age 20 and Darcey age 15. I also have a stepdaughter age 37 and 2 step …
February 6 2020Read Blog
Tube feeding, my experience by Sam
14 year old Sam shares his experience of tube feeding and how it has impacted on his life. Tube feeding – first an NG tube I was 7 yrs old when I had my first feeding tube, this was because my body couldn’t absorb all of the essential nutrients that I needed in my diet, …
February 12 2020Read Blog
Crohn’s Disease, diagnosing my daughter.
by Gail Crampton Gail Crampton talks about the journey to diagnose her daughter with Crohn’s disease and why it has led her to campaign and write a book to help others. Crohn’s – it started with stomach pains When my daughter, Isabelle, was 6 she began having severe stomach pains, nausea and no appetite. It …
February 16 2020Read Blog
Moles Can’t Play Hide and Seek
Astrid Middleton describes her journey with the genetic eye condition retinitis pigmentosa. She also describes her and her son's attitudes to their neurodiversity and how they own it. This is what prompted her to write children's stories about being included and she shares one with us here.
March 2 2020Read Blog
Rodney, the hare that didn’t care (but he did really)
Gail Crampton talks about her book, Rodney the hare that didn’t care (but he did really). She explains why she wrote it to help children with hidden illnesses and medical conditions, and how important it is. It started with Crohns Rodney Meadow-Hopper, The Hare Who Didn’t Care (but he did really), was released at the …
March 4 2020Read Blog
Mitrofanoff – what??
By Aimee King I have just had yet another exhausting conversation with a medical professional who knows nothing about my mitrofanoff, telling me all about it. Now I understand that not many health care workers will know about my condition, but why not? something like a simple UTI which, trust me, I know a lot …
March 17 2020Read Blog
A story about Myalgic Encephalomyelitis and hidden illness. Gemma Everson talks about her husband’s diagnosis of Myalgic Encephalomyelitis; how it impacted on her family and led her to write a children’s book. Our story began in July 2017. We had just welcomed our second daughter, Gracie, into our family and life was seemingly perfect. I …
April 9 2020Read Blog
Keanu’s Story – a story of Juvenile Epilepsy.
Stacey Smiley talks about her son, Keanu's, journey with epilepsy from the age of 1 to now, 5 years later. She talks about his diagnosis, what impact it had on Keanu and about discovering the epilepsy was caused by a CHD2 gene mutation. Stacey also gives some useful tips on how to interract with people with hidden disabilities.
May 17 2020Read Blog
Stacey Smiler explains what clubfoot (talipes) is. She describes her reaction to finding out her son's diagnosis and Keanu's subsequent treatment.
July 20 2020Read Blog
Steve Webster, founder of FND Dimensions talks about the charity's work to raise awareness of Functional Neurological Disorders and provides support services to help patients deal with and understand their condition.
August 15 2020Read Blog
Cystic Fibrosis throughout history: how has life expectancy gone from being 14 years old to 40 years old?
Using Cystic Fibrosis as an example, Isobelle Moores discusses how developments in science other the years have impacted on the lives of many people with life changing conditions.
October 8 2020Read Blog
It all changed with one stroke
Adele Ramet describes how her life suddenly changed from being active and independent to suddenly needing full time care following a devastating stroke.
October 20 2020Read Blog
The beauty of Music Therapy
In this blog we talk about the benefits of music therapy and how it can support individuals with additional needs.
February 23 2021Read Blog
Karen McGuinness from West Cheshire Autism Hub describes autistic burnout and explains what people can do to help prevent it.
March 18 2021Read Blog
Tourette's and existing services in the UK, she is now campaigning to raise awareness about this very misunderstood condition. Here she explains what Tourette's Syndrome is, what it is like living with the condition and about the campaign.
September 21 2021Read Blog
Life with hidden disabilities
Sarah* is a student at university who also has a caring responsibility for her younger brother. He . He has been diagnosed with Post-Traumatic Stress Disorder (PTSD), Anxiety, Depression, Psychosis and Attention Deficit Hyperactivity Disorder (ADHD). Here she talks about her brother's needs, how he hides his mental health illnesses and what support he needs.
December 17 2021Read Blog