Four years ago, 3rd August 2018, we launched the first accessible camp at Ivy Farm. Tim (the husband) and I, Rachel, had dreamed of creating a place where family holidays with children who have complex needs could be a restful and fun for the whole family. We know our own family holidays are normally harder work [...]
Too many multidisciplinary teams (MDTs) work like a group of toddlers in a pre-school. Bear with me on this one. I’m not suggesting they aren’t fully toilet trained or have tantrums (although that isn’t entirely unheard of) but rather that their social interactions aren’t fully developed. Young children might think they have played with their [...]
“Excuse me, can you tell me where the toilet is?” Whether in a pub, restaurant, out shopping, at the park or the beach – we all got to go some time. It might be a loo with metal toilet seats and blue florescent lights which stinks to high heaven (we’ve all been there). Or maybe it's [...]
There is a panoramic view of any hospital admission but step closer and the days are riddle with particular incidences creating a uniquely, stomach churning rollercoaster. Our time in hospital has highlighted it this week. Messages went out saying, “He’s getting better” “Doing well” “It’s been a success” These statements are all true. They are honest, [...]
The day of a carer … When I talk to others about the complexities and challenges of caring, it can all to easily feel like I'm being unfaithful. But often it isn’t the actual doing things for my son that’s exhausting - it’s the hoops and hurdles, the policies and funding panels. In short, it’s the [...]
Last year, I shared our mutiny at rejecting processed milk and deciding to finally try blended diet for our son. Sadly, the level of scrutiny we were exposed to did not match the risks posed. We weren’t supported by our local team at the time of this decision and felt the need to justify and explain [...]
I avoided doing a blended diet for my son for years. I sat on a Facebook group stalking and listening. If I’m honest, my medically tinted spectacles probably tipped me towards thinking it was a bit hippy. The irony that feeding your child actual food could be deemed ‘alternative’ didn't quite seeped in as being [...]
It’s Children in Need this week. Forgetting the cultural drive to be good or bad, right or wrong, I have to admit I have been increasingly uncomfortable with Children in Need (CIN) for the past few years. A perspective which has been voice by others in recent days across social media. So, stepping into the murky [...]
It’s the 11th October 2021, there is a severe weather front closing in and I have written about it before. I’m braced for impact. It’s my son’s 16th birthday tomorrow I am full of so much joy, pride, gratitude and love. I am brimming with heartache, loss and grief. Weather fronts are the transition boundary [...]
Have you ever tried to curate your expectations in order to minimise disappointment or sadness? As though you are trying to flatten the curve of your emotions by not letting yourself feel the high of hopefulness or joyful expectation. I have found myself attempting (and failing) to compress and ignore feelings of hope, excitement, love or [...]
