Day 41: A question of trust #107days

Today’s post is from Fiona who has a dude the same age as LB. Fiona raises her concerns for the future and asks how we can trust the NHS;

“I wanted to get involved in this campaign as it touched my heart and soul and my thoughts go out to Sara and family of Connor. This is my 18 year old son, who has global learning difficulties, epilepsy and autism as well as type 1 diabetes. Although we struggle sometimes, and some days are more challenging than others, I cannot comprehend how this tragic end to Connor came about while he was in the care of a unit specialising in care for vunerable adults. I would not leave my son unattended in the bath, privacy is one thing, but abandonment and lack of care is another. This is negligence which they were forced to admit only after an independent investigation.

How are we supposed to trust in the NHS to look after our vulnerable children and adults after this?”


This is a huge question which  gets at the  heart of what we’re trying to achieve.

As we don’t have any answers right now, one small way forward may be to record those small ‘drops of brilliance’ that have made a difference.

A collection of brilliant drops may offer  ideas, thoughts or changes to what people do. The otherwise unsaid or invisible stuff.


Day 28: Drops of brilliance #107days

Day 28 was adopted by Kara2008, mother to Grenouille, who has a rare genetic rearrangement. Kara explains that she was motivated to get involved with #JusticeforLB because:

We’ve met many wonderful therapists, educators and medical staff since Grenouille was born, and the people who stand out, the ones we will always remember and be grateful to, are those who do their jobs – and then a wee bittie more.  Who take the time to notice that something isn’t quite right, and take still more time to think of a way to help fix the problem. Those little sparkles of flair, kindness, thoughtfulness, sheer brilliance, turn a typically difficult day into a day to celebrate.

When thinking of what to do for #107days a discussion was had on facebook about little acts that make a big difference, and that conversation has grown into today’s #107days challenge:

I’d like to invite dudes with additional needs, or their parents, to share with us the brilliant little things that people have done to help them.  If we can collect at least 107 Drops of Brilliance, then perhaps they will be enough, pooled together, to give everyone a chance to reflect on what good practice really looks like.  You can post your Drops of Brilliance here in the comments of this post, or on the Justice For LB Facebook page.

raindrop shamrock

Kara has kicked off our #107days drops of brilliance with one of her own:

Amongst a myriad of medical conditions, Grenouille has a growth problem which results in a tiny frame and weak muscles. To be able to concentrate and learn, Grenouille needs to sit stably, which means having thighs parallel to the ground and feet flat on the floor. But when we went to school for the first pre-Reception Induction Day, we found that even the minuscule Foundation Stage chairs left Grenouille with legs swinging, and trunk and head wobbling. The classroom staff ransacked the school furniture store for footstools, but none was right, this one was too high, pushing G’s knees up to armpit height; that one was too light and kept skidding skittishly out from under G’s feet; the third was a typist’s swivelling footrest, which was so unstable that it nearly upended G into a toy-bin.

Just then the caretaker came rampaging in, wanting to know who was raiding his furniture store. He swept all the unsuitable footstools away and returned, grumbling, with a selection of telephone directories in various thicknesses, which he arranged and rearranged under Grenouille’s feet until they were just the right height.

When we went back for the second Induction Day, the following week, I expected to see the pile of directories again, but no, Grenouille now had a custom-built foot platform. After we had left on the first day, the caretaker had measured the stack of phone books and, using stout 1.5cm plywood, had made large, shallow, open-bottomed box to the same height, neatly covering the plywood top in an offcut of the classroom carpet. It was perfect – too heavy to slide about, the carpet muffling any noise from G’s feet and providing a non-slip surface.

Of course, eventually, Grenouille did grow, and needed a lower platform. It wasn’t a problem. Without being prompted, the caretaker would turn up with his assorted phone-books at the end of every half-term to do a spot of measuring, and if the platform proved too high, he just sawed a centimetre or two off the bottom over the holidays. Myself, I’d have been reluctant to destroy by half-inches something that I’d made with such care, but the caretaker, by now G’s friend Richard, positively relished the measurable progress that the gradual dismantling of the box represented. At last, all that was left was the top of the plinth, which Richard ceremonially binned to cheers and applause from the entire class once Grenouille had, finally, outgrown it.

So that’s Kara’s and Grenouille’s Drop of Brilliance and we can’t wait to hear your stories of kindness, brilliance, ingenuity, adaptions or special consideration that make your lives easier. Feel free to share a story about a person, or about a particular location or venue, or exceptional service, anything really, but this challenge is all about the positive. We can’t wait to hear what you have to share. If you blog and would prefer to write in more detail please do and post a link in the comments. Thank you.

Thanks to K. Cusick, of Daffodil’s Photo Blog, for the use of the photo in this post. Last words to Kara:

I wanted some brilliant raindrops, and I wanted them on a shamrock, partly because we have been so lucky with people willing to drop brilliance into G’s life, partly because of the heart-shaped leaves, but mostly as a reminder of LB’s love of Ireland.

So please do get sharing your drops of brilliance, and spread the word of this challenge. Thank you.