An alien from the planet technology...

Today work started on Elin's ceiling tracking hoist for her bedroom/bathroom. An amazing piece of kit that cost thousands of pounds (thank the lord for DFE grants) which should save our backs and provide Elin with an amusing ride in the process. Hoorah. Oh- did I mention I hate it?? I have a total and completely irrational hatred of the 'The Hoist' (it even sounds alien and sinister!) A hatred which far exceeds any feelings about other specialist inanimate objects that are necessary in our lives now. I even put off getting one because I could not bear to have it dangling in the corner of Elin's beautiful room like an evil science fiction- esque spider. Looming over us like a constant reminder of technological intervention eventually needed in Elin's life just to get her up every day. A reminder of hospital wards and homes, like the old folks home Elin's grandad lived in during his final few years with us. Not for my daughter, The Hoist. I don't want The Hoist for her. But choice is something I have learned to relinquish to a degree in our funny topsy turvey world. It doesn't matter whether I want it or not, I have to have it. Elin will need it. The Hoist must become part of our lives. One day I will not lift Elin as I do now, almost wearing her on my front like a koala bear, one day she will be too big and I will have to lose that extra bit of contact, that part of her still being my baby. So to me I guess The Hoist is an unwelcome but necessary divider between myself and Elin. However as sure as I am of my hatred of The Hoist I am equally sure that like everything else acceptance will reluctantly follow and in a few short weeks I will probably forget it's there, or wonder what we did with out it. I may even one day be singing the praises of The Hoist. For now though I shall park it in the corner of the room and refuse to give it eye contact. I'm not ready to be it's friend yet. As a literary heroine of mine Scarlett O Hara once said "I'll think about that tomorrow".

A new perspective

So Elin has been at her SEN school for almost 2.5 years. I can't believe it! Yes it's a cliche, but where does the time actually go? I remember when she started like it was yesterday.  Anyway, since Elin started school we have often commented how great it would be for Caitlin (Elin's sister) to get to see her at school. She spends so much time with her at home, but to see her at school is to understand her world entirely. For Caitlin, who is 15, school means something very different than the experience Elin has each day, for obvious reasons. However it's not just the  curriculum variation that we wanted her to appreciate. Seeing Elin in school I think, can be a little light-bulb moment. It's not just about fully grasping the potential Elin has and the full range of activities which she takes part in each and every day in order to help her reach this potential. It's about seeing the other children too, and feeling the atmosphere in the classes and the tangible love and caring that passes back and forth between the staff and the children. It's not really something that you can explain, or take a photograph of. It's just in the air. And it's Elin's world. After all, technically during the week she almost spends more awake-time in school than she does with us! Given all this, it's mad that we had not managed to get Caitlin there sooner. However, Sports Day at Caitlin's school provided an opportunity for us to take her out for an afternoon without worrying about her missing too much. So, this afternoon she came with me to Elin's school. Needless to say she loved it as I knew she would (you can't not, really). I loved it too, not because I haven't been there  a million times but because I was seeing everything with fresh eyes, through Caitlin's perspective. A sensory story in the dark room (or is it the light room? I'm never sure) about the Billy Goat's Gruff involving lots of textures, sounds visual stimulation and did I mention FUN? Then texture rhythms where the children listened to some music (Caitlin massively impressed with Beyonce and Will.I.Am featuring on the soundtrack to this activity!) and have different object and textures to feel/ stroked over them. Elin LOVED this and so did we. It was actually quite moving for Caitlin (and me of course but I cry at the drop of a hat!) to see how much Elin is adored by people outside of the family unit. I think it made her glad, as it makes me glad, that she has a place and people like this in her little life, who care so deeply about making her day fantastic, every day of every week, of every month. Lucky, lucky us. Finally Elin took part in a parachute music song which was very exciting for her and her friends and again, more sensory stimulation. To end our visit we got shown around the rest of the school, meeting the amazing kids and the fab hydrotherapy pool and soft play area. Caitlin at this point wishing she wasn't in mainstream school anymore I think!! It was a lovely afternoon and what strikes me is the school didn't have to agree to it (can you imagine that happening in mainstream? I teach there and believe me it probably wouldn't) but in typically accommodating fashion school understood and encourage close  relationships between home and school- in particular with siblings-and allowed Caitlin this glimpse into her sister's world when she is away from us (this unchartered territory, this mythical place 'Elin's school' which is now a reality for Caitlin and a frame of reference for her during conversations and news from Elins school day in the future), and we are made up that they did. Such a little thing. Yet such a big thing for a teenager who loves her little sister more than anything and vice versa. I will leave you with a text I just got from Caitlin  " Thank you again for giving me the opportunity to go to Elle's school! It was lush, honestly, I LOVED it xx" Says it all, really :-)

Father's Day

My name is Elin, five I’ll soon be
my start in life not the best it could be,
The person who`s made things easier for me,
is you who is more than a dad to me.
A crutch to lean on as I can’t walk,
you are my voice because I cannot talk.
I always have you right beside me,
you`re more than just a dad to me.
Whenever mum has her days of feeling down,
you make her laugh and wipe away her frown.
There`s no one else who I`d have to be by me,
you`re more than just a dad to me.
You nursed me when I was in my hospital bed,
I could see you hid the worry and dread.
You keep your spirits as strong as they can be,
you`re more than just a dad to me.
Others will never know how difficult it`s been for you,
you never moan, and there`s nothing you won`t do.
There is a lot you need to do for me,
You`re more than just a dad to me.
Looking forward I hope the future is bright,
for my special Daddy won`t give up the fight.
My name is Elin, five I’ll soon be
You`re more than just a dad to me.

Fun in the Sun

It's been a wonderful, sunny weekend. One of those weekends where, even though you are in a back garden in Wrexham, if you squint a bit and use your imagination you could almost be abroad. Almost. I love weekends like these (who doesn't?) but, in the past they have been a little tricky. You see, Elin's Daddy and I are sun worshippers. We love the sun, we used to love going on holiday and lying by a pool all week. But Elin does not follow in our footsteps. Her condition makes it difficult for her to regulate her own body temperature, so she can become quite hot and bothered. Added to this, she has terrible eczema. This, we are assured, is not part of her condition. Just bad luck (go figure!). Her eczema is sun-sensitive so as soon as the summer comes poor Elin breaks out in an angry, red rash. The cream we are currently using goes some way to combatting this and for the first time in the history of Elin, she has been out with us all weekend in our beautiful garden and loved every second. This has been aided by our recent purchase- a double-sun lounger with giant shade, which means Elin can lie outside and have plenty of room to stretch out, without being bitten by bugs, as she is raised off the floor, or being hit by the sun's strong rays. Brilliant. Oh- and there was a small matter of a paddling pool to add to the fun, too! Quite difficult trying to keep Elin supported in order for her to enjoy a paddling pool, but worth the muscle cramp in my legs to watch her enjoy splashing around like all the other kids in Britain this weekend. "Throw those curtains wide, one day like this a year will see me right" (Elbow) x

A must read

This article helped me so much when I read a few years ago. Life with Elin at the time was transcending from the chaotic and bewildering to the absolute norm. Everything had begun to feel easier, less painful and I was starting to make sense of our 'new world', the shock and emotionial turmoil which had ensued from Elin's diagnosis at birth slowly but surely ebbing away. When I first read this it was like the author of the article had got inside my head and was able to express my thoughts and feelings about raising Elin, far more articulately than I could! We subsequently bought her two children's books, 'Just Because' and 'Sometimes' , which feature her own profoundly disabled daughter and make no concessions towards this fact, simply portray her as she is. I absolutely love the books and have bought copies for children of family friends, to help them understand that there are other children like Elin around and that, in their own way, they are simply perfect as they are. http://www.independent.co.uk/life-style/health-and-families/features/profoundly-disabled-we-wouldnt-have-her-any-other-way-2072088.html

Baby Dot pictures :-) x x

Some half-term pictures. Couldn't resist including the last one after all- school plaits :-)