teddington trust

Staying out of the shade…

Rainy Days and Mondays

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It has been a drab, grey and wet Monday here, but today we don`t mind as we are all still smiling after a truly magical evening last night.

As soon as night fell, I set off in my waterproofs, glow stick and head torch to pick up my buddy and neighbour, Zahra, before setting off to a nearby field to meet my friends for our much anticipated Night Hike. Mummy and Daddy were blown away to see how many people had turned out on a dark Sunday night to come along and join us. I wasn’t so surprised…what toddler wouldn’t want to play out in the dark with fun torches and glow sticks plus get to jump in lots of fresh, deep muddy puddles!

Mummy brought along my UV meter so she could check all the torches to make sure they were safe, while Daddy handed out glow sticks to all my friend and their Mummies and Daddies. He had to be very careful not to give the pink ones to the Daddies as it seemed they weren’t too keen on those ones….somehow Daddy ended up with a lilac one which didn’t amuse him much either!!

But once every, child, toddler, baby and adult was glowing, off we set with me leading the way with my brother Raife. Of course being only 14 weeks old, Mummy had to give him a bit of help, so she carried him in his papoose (some say it was cheating, but I guess we had to make allowances for the babies of the group!). The walk through the fields was so exciting and we glowed all the way with excited chitter chatter carrying along the path. More glow sticks illuminated our way through the gates and turnstiles (thanks Daddy) which made the route even more exciting.

It was amazing for me to do this walk at night without my gloves so I took full advantage and plunged my hands into every deep puddle and picked up lots of sticks..so much so that I soon ended up at the back of the group before too long, but I was determined that I would walk all the way, and walk it I did!! Just as we turned into the home straight I heard Zahra calling my name which gave me a final spurt of energy and we held hands as we walked the final stage across the church yard and into the church together.

When we all arrived at the church we were amazed, it looked so magical. All the lights had been turned off (as they are not UV safe lights) and some lovely ladies from the church had lit lots of candles and laid out hot chocolate and cakes. My new friend Noah came and gave me a yummy cake and drink, he is very kind and I must be a very cool boy having a big boy friend as he is really grown up…nearly 7! I really enjoyed the cakes as they had lots of scrummy icing which is my best bit!

I sat and chatted with my best friend Finlay, while we enjoyed our celebratory hot chocolate. We both managed to walk all the way to the amazement of our Daddies, and I think they were very proud of us!!

After a lovely evening all too soon it was time to say goodnight, so we all went our separate ways, home to bed for sweet dreams of our big moonlight adventure!

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In the Night Garden

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While we all are engrossed in fundraising, planning and preparation for Eddisons all important Indoor Garden; which, we dream to have in place before summer comes around again; an equally important and easier to achieve venture has been under way.

A Night Garden…

“Sat in a box gathering dust since it was given to me by my lovely Auntie Zoe, Daddy decided that while other Daddies were busy tidying up and packing away the garden toys and furniture, it was time for us to get ours out, and so he dusted off the box and erected my wendy house.

Then out to the garden Daddy headed and thanks to an early Christmas present from Nanny and Grandad he got busy building a fun climbing wall and slide to sit alongside my wendy house. With a few finishing touches by Mummy of some funky solar powered lights the garden is complete!!!

The twinkly and daisy lights make it magical and I have had lots of fun after tea with my friend next door running in and out of the house, climbing and sliding. I even have a light inside my house so I can turn it on when I go in; after all it is essential to have light when making imaginary tea and cake.

Even Nana popped in to say hello in my new house when she was visiting last week with Grandpa, and we all had lots of fun together in the garden. I can`t wait to have the rest of my friends over to play soon and for my cousins to see it in January when the all come to visit.

Daddy said I was a very good helper when he built the garden….but…..hmmm, but where did I put part A0167 (b)!!!

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Educating Eddison

Mummy says… 

“Having worked so hard to make Eddison comfortable and happy to wear his visor and protective clothing, we approached the winter months with mixed thoughts! The shear excitement of being able to allow him the freedom of outside play after dark mixed with the anxiety that would he then become confused.

Until the winter Eddison had fully grasped the concept that he must always wear his gloves and `hat` (aka visor) when going outside and in fact he would get it himself when he wanted to venture out, and should a glove start to slip off he was always prompt to alert us!!

So the challenge was how to introduce this new unprotected outside time without unravelling the daytime routine.

Thanks to a simple but ingenious idea from a friend of a friend and some patience and clever photography by Eddison`s Auntie Becky we came up with a very useful tool in helping with the transition.

Auntie Becky staged a simple setting outside and then took two photographs of the same setting, the only difference being that one she took in daylight the other she took at night. We then mounted this on the wall by the back door which has a view of the garden and hung two spate hooks below. The one below the daylight image has a bag with his cream, gloves and balaclava and his visor hung on it and the one below the night time image has a little torch for him hung on it.

This allows us to ask him to compare the image with the outside view and select what he needs.

So far so good……..!!!!

Every night we now enjoy outside time after dark and despite him thriving on the air and sensory aspects of this time, he so far remains as happy during the day to wear his clothing as he always has.

I am sure we will have many battles to come with it, but this simple tool has enabled us to educate Eddison in a fun and subtle way allowing us to make full advantage of the fun dark evenings.

Think he might be taking it too literally though….he is on occasion found standing by the back door in only his pants and boots with torch in hand eagerly awaiting me to open the door!!!!”

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The Power of the Net!

We blogged, You Saw, You Solved!!!

Mummy and Daddy say the internet is a wonderful thing and I think they might just be right!

Following our various blogs and facebook entries our trustee following have put their thinking caps on and come up with some great solutions to some of the challenges we face; here are just  few of them so far;

  • We asked for tips on removing suncream stains from clothes – You spoke, and we are trialing various suggestions now;
  • We blogged about our nightmare shoe shopping trip – A few shares and comments later and we now own a Clarks foot measure so we can measure at home and buy online (just so ideal and much less stressful!!);
  • Our guest blog mentioned difficulties with opening car windows and concerns over accidents – You told us about Medic Alert and we now have on order a harness strap which holds vital medical information and a wrist band for Eddison plus we have sought some suggested wording from the XP clinic for these which we will disseminate to others soon. We are also working on some wording for a sign for the car;
  • We asked for suggestions on swimming pools to test – You made suggestions and contacted us directly with further options, which led to us being given a weekly family swim session in a safe pool for 12 weeks and very recently finding a safe leisure centre pool for future use; both of which are just a fantastic result.

We cant tell you how much we appreciate your help with this and we look forward to more great suggestions in the coming weeks and months x x x

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Missing Mummy and Missing Out

Today I woke up feeling blue,

Daddy had to pull me through;

Mummy; she has gone away

and for three days away she`ll stay.


A trip for Raife to meet our family,

but sadly though she couldn’t take me;

Twelve months have passed since last they met;

just not the same talking on the net.


Mummy checked the plane, when she flew,

and Nanny`s windows and bulbs brand new;

Which means despite me having XP

next time Mummy can take me!!


p.s. Note from Mummy to Eddison; Next time baby, when all is safe…. Raife and I are missing you and Daddy lots x x x