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.

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27 thoughts on “Day 28: Drops of brilliance #107days

  1. What a wonderful story. Brought tears to my eyes. We need a world in which there is room for such glorious acts of thought and care, too often we create systems that shut those individuals down.

  2. Pingback: #107days: Drops of Brilliance | Who By Fire

  3. We have just experienced the hardest term of my 8 year old daughter’s entire school life where she averaged less than 30% attendance due to anxiety and subsequent illness. I spent many many mornings sat for over an hour in the school car park or cloakroom with her as she literally crumbled with the mere thought of trying to cross the threshold into the classroom before calling time on her obvious distress and heading back to the safety of home.
    Needless to say, it has been an emotionally and physically exhausting time for all of us and so, when a card dropped through the letter box on the first day of the holidays addressed to my daughter, it was overwhelmingly moving to find a very good friend (who also happens to be a primary school teacher whose 2 daughters are the same age as mine) had sent a beautiful little bracelet and a perfectly worded letter recognising and congratulating my little girl for her tremendous efforts all term. And when everyone else is just noticing how much school is being missed, how detrimental this is, what we need to try next to fix it, how unsatisfactory the whole situation is, my friend’s drop of kindness felt like an ocean.

  4. Pingback: Two little drops of brilliance | mydaftlife

  5. In my 30+ yrs at JWS, where LB was a student, there have been so many drops of brilliance but this one demonstrates how determined and committed staff have been since forever and hopefully make you laugh. It was when the ice rink first opened in Oxford. Schools could send groups for half hr lessons for only £1 a child. I was still teaching then, but never skated, but other staff had so we took all of our secondary group, including one student who had cerebral palsy and was wheelchair user. He could weight bear with support (human or mechanical) and his mum said he went skating with KEEN. So we were determined he wouldn’t be left out of our weekly sessions. Skates on he was helped onto the ice by 2 competent staff members and held up to skate on his feet. Then his mum sent in KEEN photo of her son at the ice rink – on a sledge! AtJWS there has always been a ‘can do’ approach ….and no one ever looks for excuses of why we or he students can’t do something. Staff and kids made me proud every day of my working life….

    • Love it. “…a vital ingredient of success is not knowing that what you’re attempting can’t be done. A person ignorant of the possibility of failure can be a half-brick in the path of the bicycle of history.” (Terry Pratchett)

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  10. There have been many drops of brilliance in the life of my two disabled children- doctors with humour, warmth and compassion for my son and daughter, and some great support workers and teachers who not only accepted my son’s unique personality and needs but who loved him to bits for who he is- people like Umesh who is now part of his Circle of Support now he is not paid to work with him, the amazing Shane who came in on his days off to check my son was settling in to his new home and a teacher who was the first to recognise my son’s sense of humour and laughed with him.

  11. Adding another drop of brilliance from Facebook –

    “My child has to wear a medical device that attaches to the body, but in order to avoid skin breakdown, it has to be moved around every few days. The lovely taxi-escort lady noticed that on some days, the car seatbelt was pressing on the repositioned device, making it dig in and causing pain.

    Today, she checked, as she now checks every morning, where the device is currently placed, to make sure that my child gets to sit on the side of the car where the belt angle won’t interfere with the device. “

  12. This is such a big drop, it’s more of a splat. So obvious, but bizarrely ignored: Value, promote and enable kindness in caring.

    From the Joseph Rowntree foundation:

    “In the five months I spent researching and writing the Cavendish Review, only two people used the word “kindness”. One was Deborah Holman of St Christopher’s Hospice, which explicitly advertises for staff who are kind and reckons it can train them in almost everything else.The other was Eileen Sills, chief nurse at Guy’s and St Thomas’ hospital, who started a revolution when she closed three elderly wards and took the clinical teams off site for two weeks to think afresh about what good care looks like.”

    http://www.jrf.org.uk/blog/2013/12/care-staff-should-pass-kindness-test

  13. My daughter has been profoundly deaf since birth. She’s now 34. She needs BSL interpreters for any events/ceremonies etc. Her sister was getting married and I enquired about an interpreter for the service. I was passed from pillar to post with everyone saying it was someone else’s job. Even if I managed to get someone for the service, we would have to pay for someone to continue for the speeches. About £500 in total as it was a bank holiday.
    I have a dear friend who is an interpreter and lives near Cardiff (we live in Bolton) and I phoned him to ask if he knew any interpreters up here who would help out and maybe do it freelance for a little less. He said he would get in touch with some of his friends and get back to me.
    The next day, he rang to say his wife has a friend in Salford who she hasn’t seen in ages so they would come up for the weekend and he would nip over on the Monday and interpret the service and the reception speeches. His fee? A bottle of Jack Daniels.
    He was our Drop of Brilliance.
    Oh, and he ended up helping the photographer, holding the flash and rounding people up for the photos.

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