Celebrating #roarsome children with undiagnosed genetic conditions
It’s Undiagnosed Children’s Day. It is hard to believe that it was seven years ago that Lauren (now of SWAN UK) and I began Undiagnosed Children’s Day (It used to …
Category: Health
See Us, Hear Us: Supporting siblings of seriously ill children
As many parents who read our articles can tell you, when a child has a serious illness, their normal family life is hugely disrupted. Medical appointments, caring responsibilities and fitting …
Speech, Language and Communication: any improvement since #Bercow10YearsOn?
Speech, language and communication is fundamental to children’s development. Children with underdeveloped SLCN skills (which is more common that you might think) can neither learn or achieve as well as …
The power of pacing: Managing energy with a rare disease or chronic illness
It’s Rare Disease Day, something we traditionally mark, with both Renata’s and my own family being affected by rare conditions and all that it brings. This year I want to …
The Deafblind world: The ‘Shoeness’ of a Shoe
Imagine a world you can neither see nor hear, yet you must find a way to grow and thrive within it, feeling your way, using the senses you do have …
How can children be traumatised just by going to school?
In a post titled Send Children Being Traumatised By Not Getting Help Needed in School, Tania recently touched on the subject of SEN children becoming traumatised by the education system. She wrote about …
My “control freak’s guide” for my disabled daughter’s dignity and care in hospital
The thing that worries me most about my disabled daughter as she gets older is who will understand her. Who will really get to know who she is, and what …
Undiagnosed, but Dottie’s condition affects the whole family
6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that is likely to remain undiagnosed. Having an undiagnosed …
Moving on from #Bercow10: What next for Speech and Language Therapy?
Recently, a review was published by the children’s communications charity, I CAN and Royal College of Speech and Language Therapists to see what improvements had been made a decade after the …
Partnering with clinicians to reverse Rett, my daughter’s rare disease
“Did you say ‘Retz Syndrome’? How do you spell it?” These were the questions I asked the neurologist who speculated in passing that this might be the explanation for why …
Abigail’s rare childhood disease that she won’t outgrow
It’s Rare Disease Day this week and evey year we like to highlight the day, on 28th February, by telling you some stories of children and their families who are …
Top tips for working on your child’s speech and language targets
The speech therapy process is very much a collaborative one. Even if your child is lucky enough to get regular speech therapy sessions, that’s still only half-an-hour or an hour …
How I learned to take the best advice (and ignore the rest) when raising my ADHD son
In my first post on top tips for parenting a child with challenging behaviours, I suggested that you: Seek support and be compassionate with yourself and that you work as …
Legal grey zone lets health body strip vital funding from disabled children
Dominic is 11 and now in his final year at a mainstream primary school. He is very happy there and despite very complex medical issues and relying on a powered …
NHS liaison: The Designated Clinical /Medical Officer for SEND
As some of you may know, I have been doing my bit to help improve local SEND where I live in Surrey – right now I’m running their new Local …
What causes autism… what doesn’t?
If your child has been diagnosed with autism and you’re wondering what could have caused it, I would strongly recommend that you do not go searching for the answer on …
Schools breaking the law on helping children with medical conditions
A new report published by Young Epilepsy says one in three schools in England are effectively breaking the law by not having Individual Healthcare Plans (IHP) in place for children with …
Steph’s chronicle of her family’s journey through SEND, cancer and loss
Renata and I first met Steph Nimmo back in 2013 at the Department for Education when a group of SEND bloggers were invited to speak to then SEND Minister, Ed Timpson. …
How I became a better child physio after parenting my sick newborn
We love sharing good practice with you that can help both parents and professionals offer improve the lives of children with disabilities. Andrea Selly, is the mum of twins and …
Exploring Autism and Music, a chance to listen, learn and participate
Research into different aspects of autism can reveal many unexpected and interesting findings, which can sometimes help to improve the lives of young people in a practical way. Today we have …
