November. It’s that time of year again when Pudsey is dusting off his eye patch and schools around the country are asking children to come in wearing spots (because we all have spotty clothes in our cupboards) to raise money for Children in Need. What could possibly be wrong with [...]
I recently had a conversation with a head of SEN services in a local authority working incredibly hard to stretch scarce school placements for children with SEN. In the middle of our conversation, he explained how it simply isn’t fair for him to allocate resources based on who shouts the loudest. Rather, he has a [...]
Before having children, holidays often consisted of lazy pub lunches, afternoon naps, late nights and spontaneous decisions. After children – well, I guess we all acknowledge, it is a ‘bit different’. When you have a child with additional needs though, just going outside the front door for a couple of hours can take an operation of [...]
Sleeping under the stars It’s tough at the best of times to get enough sleep so add in the layer of holiday expectations and it can feel so much more of a loss. First, adjust your expectations (as always). Then do what you can to maximise the sleep you can get. Here are some of the [...]
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 [...]
