All the small things...

Elin seems better! Fingers crossed the antibiotics have cleared whatever was upsetting her. Yesterday something really small happened, but it was the best part of my day. After arriving home from school and having spent quite a while on the school bus Elin had to endure an immediate trip out in the car to go and pick Caitlin up from the school bus- not ideal considering how much she hates travel- the school transport home is normally quite enough for one day! Anyway Daddy wasn't home in time to save her from this fate so she had to come with me. Predictably she cried (loudly!) all the way. We stopped at the bus stop for Caitlin and she got in and having had an eventful day began filling me in straight away. I watched Elin's eye's widen in the rear-view and she stopped crying, immediately. She had, without a doubt recognised Caitlin's voice and was listening intently. Her eyes were darting everywhere as if looking for her sister. Then, suddenly, the biggest grin you have ever seen spread across her face and she began laughing-really laughing. Bear in mind as she had been poorly for a good few days, we hadn't seen many smiles recently. She was still in her car seat, the car was still moving. It was an undeniable reaction to Caitlin and nothing else. It was absolutely joyous to see and as Caitlin bent around from the passenger seat to make a huge fuss of her I was reminded of the worst phrase anyone had ever uttered to us about Elin during the past five years. A consultant, who prophesied when she was four months that she would never be, quote "A thinking person". Well guess what..I think she was thinking. I think she was thinking she was really glad to hear her sister's voice and she couldn't wait to get out of her car seat for a cuddle. A small thing. But such a big thing for us. In your face, doc. What do you know? :-)

Sick September and an aborted walk...

Well it's September and as most parent's will know this means bug-time. Mercifully Elin has had an amazing transition back to school after the holidays and though September is a notoriously difficult time for her health-wise (and also because of the change in routine being back at school five full days) she was doing amazingly well. Note: When your SEN child is doing amazingly well, approach with caution!! Yup, that's right, I spoke too soon. Elin's not bad, but she's not right. A trip to docs on Friday after school and we came away with diarreah-inducing antibiotics, but full of hope that they would clear up what we suspect is a urine infection. Urine infections are not only a nightmare for poor Elin, they are a nightmare for us too because they often involve the dreaded urine sample.  Luckily the lovely doctor agreed to antibiotics without one but pointed out in would be best to drop one of if we could. Most parents will identify with the dreaded attempt-to-collect-urine situation. When your child has issues like Elin's it's worse- she cannot show us when she is ready for the loo. I have sat for hours with her over a tin pot before now, when the hospital (un)wisely got rid of the bags you used to just stick onto her and wait for her to wee. In fact, trying to catch a urine sample when she was poorly once, then getting one and knocking it over was almost soley responsible for one of my few and far between complete meltdowns (the kind when you have to have a cuddle from your Mum, cos that's all that will do). Anyway, I digress. My local docs is not as forward-thinking as the hospital and they gave us a bag to stick to her (hurray!). Elin managed to hold in a wee from 11:00 this morning until 4:30!! But she finally did it and yup, you guessed it, as I delightedly and carefully un-stuck the bag, the urine gleefully poured out in front of my eyes through a hole in the bottom. I could have cried. I didn't, but I could have. Luckily I suddenly remembered a urine catching kit I had from last time we needed it and she is currently wearing an attractive pad which she will hopefully saturate soon (but probably won't) so I can then suck out the urine with a syringe and pour it into a sample bottle. I'm keen to get her urine tested as something is bothering her and I'd like to cross it off the list. During this time today we attempted a walk outside in one of the hottest September weekends ever with one of my lovely friends and her two daughter's, keeping us company whilst Paul and Caitlin are in London for the weeknd. Elin was not having it. Back to thrashing around, leaning over to her left so far she was almost bent in two (and her butterfly harness horribly pressing against her skin) then finally 'jumping' up and down in her seat, pushing with her feet so her legs are almost strait (and look painfully close to snapping in two!!) This is massively disappointing given how wonderful she has been since the start of term. I cannot stand to see her like this, it's unbelievably upsetting, We had to turn around and come strait back home (even though I had got her out twice to try and placate her!) I can only hope it's as a general result of feeling 'under the weather' and not yet another backwards step. She is having a new buggy in the next couple of months I can only hope it's sooner rather than later and moreover, that it makes a difference. 

*Video won't upload!*

It's nothing like being in Holland!!

This is a wonderful piece written by someone far more articulate than myself about that poem "Welcome to Holland". Every parent of an SEN child will know this poem because loads of people tell you to read it when you discover the unthinkable about your baby. Like the author here, despite the poem being undeniably uplifting, it always bothered me. I found it slightly patronising and pretty rose-tinted. Read this guy's response to it, because frankly I couldn't have put it better myself.

http://not-hothead-yet.livejournal.com/703116.html

Autumn day's when the grass is jewelled......

Well it's the second week in September and Autumn is fast approaching. My slippers have replaced my birkenstocks, I'm thinking about putting the leccy blanket on the bed and yesterday Paul lit the first fire. I'm glad. I love Autumn. It's my favourite season. Obviously I like the sun and the Summer- who doesn't? But I sometimes feel the gap between 'normal' (I use that word very cautiously) family life and our life more readily in the Summer. Summer is a time for getting out and about, for day trips, visits, swims at the seaside, holidays, sunbathing, spending time in a beer garden, going to the park. Stuff that can be hard for us, especially if Elin is not in the mood to sit/travel.  It can feel like we're missing out, it can make me think about what we could be doing. There is not a more dangerous phrase for your psyche, believe me, than one which starts with 'If only......'. So Summer, despite it's advantages, can be difficult for me. Not so with Autumn. The first time it's dark before eight, I feel like celebrating. I woke up this morning and noticed the leaves on the tree outside our bedroom window had just started to turn. We are surrounded by tree's and Autumn is simply stunning by us. I was elated. You see, Autumn and Winter narrow the gap. It's beginning to get cold, windy, rainy. Most families enjoy snuggling up together, not going very far, spending a lot of time indoors. Like us. Our way of life becomes the 'norm' for everyone and in simple terms it just makes me feel better. Less guilty over things I should be attempting to do, less sad when we try and Elin does not enjoy them, less distraught that we cannot have the day out we would ordinarily have chosen, less introspective about the could-have beens- for all of us as a family. Oh- also, Elin looks pretty cute in a wooly hat :-) So, hello Autumn I missed you and the comforting crunch of the leaves beneath my feet and the sight of my breath in the air. By next Easter I will forget how I feel about you and I will be silently pleading for the Summer to arrive so I can pack away my UGG boots and get some Vitamin C into my skin. But for now, our love affair shall continue toward Christmas, my absolute favourite time of year bar none...but that's another story....
"Autumn days when the grass is jewelled
And the silk inside a chesnut shell
Jet-Planes meeting in the air to be re-fuelled
All the things I love so well
So I musn't forget, no I musn't foget
To say a great big THANK YOU
I mustn't foget"

Jolly-days

Just back from our holidays! We go, every year now, to Porthmadog which we absolutely love. I'm not going to lie, sometimes it hurts that we can't go abroad. I know people do, of course, with kids like Elin. With meticulous planning, the right medical insurance and travel company, it is possible. But it's not for us. I am a nervous traveller at the best of times so the thought of travelling a few thousand miles with Elin (who as you know hates travelling anywhere altogether) leaves me a bit clammy to say the least. What if our luggage got lost? What if her medication got broken or lost? How would I even begin to pack when we needed an extra trailer just to get to the North Wales coast for all her equipment/feeds etc? I sometimes feel I should be braver and just take the bull by the horns, but how much would I be able to relax? How much of a holiday would it be? Also, Paul points out rather sensibly, we should always ask ourselves 'What's in it for Elin?' in terms of going abroad, probably not much. She does not react well to heat and the sun marks her skin as well as setting off her eczema. It would probably all be too tiring and confusing for her, since she is so reliant sensory-wise on her environment. So it's not to be, but since Paul and I always went abroad before she was born and loved it, it is something that I daydream about now and then (one of many things!) However, alongside this is our love of the coast, and in particular Porthmadog. Luckily, Elin shares our love (it must be in her blood!) and it seems a rainy week in North Wales is her idea of heaven. She was such a good girl whilst we were away, calm and happy and even tolerating her chair now and then (we used the good old pouch for places the chair could not get to, or when she was fed up). She loves the caravan, I think it must be something to do with the sounds and how everything in a caravan is amplified. She loved spending an intensive week with Caitlin and her best mate Lydia (Elin revels in their teenage chatter and banter. I think she wants to be a teenager herself!) So a good week was had by all. It may not be everyone's idea  of heaven, but give us a caravan on Greenacres and heaven is definitely where we are :-)

In the caravan with Mummy

 Which way's the beach then???

 I want to be a teenager, too!

 Watching ribbons on the beach :-)

 Wig-wam fun!

 It's so funny being in Daddy's pouch!!

Portmeirion

 Brits on holiday!

 We are not leaving the beach!

A brief encounter..

The other day we took Elin to a popular local spot for a day out. It was a sunny day and teeming with people enjoying the weather and the start of the school holidays. We decided to abandon Elin's chair and take her down onto the rocks on the river where scores of families were already enjoying themselves. It meant carrying her, which is getting tricky, but it was worth maneuvering the deep stone steps to sit on the rocks with her and watch her listening to the flow of the river and the splashes of the other kids as they paddled in and out. I had already noticed a few people watching our descent onto the rocks, the unstrapping from the chair, the shifting Elin's weight about on my hip whilst trying not to catch her leg splints. I wondered fleetingly what these people are thinking, do they wonder how old she is, what is wrong? Mostly people just smile, on this occasion we got the offer of some help with her chair which was lovely. Anyway, in terms of people looking (or is it noticing?) I find elderly people and children are the most astute. Nothing much gets past them. So it wasn't long, once settled on the rocks and enjoying the sun, before I saw a little girl. Not looking at us, but staring. Transfixed even. Trying, I assumed to work out why Elin was being cradled like a baby and holding herself like one too but was obviously much, much older. I didn't mind, I really didn't. There is never any malice or ignorance in a child's stare, just interest. Anyway I carried on talking to Elin and Paul and forgot about the girl and her big brown inquisitive eyes. However pretty soon I noticed she was approaching us, with her Mum. Pretty unusual. People, though friendly, seldom actually speak to us (almost as if they are too frightened of somehow inadvertently causing offence. In contrast to this, I, on the other hand will speak to anyone who will listen!). The Mum explained that she had noticed that the little girl, who was six, was staring at Elin. She said that she is teaching her never to stare, but that if you find someone or something interesting or you want to find out about them, then you should just go and say hello. So the little girl said hello (still serious, thoughtful) and I told her a bit about Elin, and why she was wearing funny splints on her legs and that she was smiling because she could hear the other children playing in the river. The little girl nodded a lot. I had a little chat with the Mum then they were ready to be on their way. Before they left us though, I thanked her and told her I wished everyone had the same attitude as she did and the courage to ask about what they didn't understand, even if there is a fear of being rebuffed. So thank you little girl and your Mummy for being brave enough to say hello to us. Would I have approached me had I been that Mum and she been me in a parallel universe? The truth is I have no idea. I wouldn't know then what I know now. My life would be totally different. But I certainly hope I would and would encourage anyone reading this blog to do the same. You never know, it might just make someone's day :-)

Our Day Out

Well Elin has had a fab day out today with her little buddy Megan! We have been to Park Hall Farm before but today was particularly noteworthy due to the length of time we spent there without Elin getting too upset or stressed with the buggy situation. We have been creating 'buggy situations' daily, even if we don't need to go anywhere and some of these have been successful outings, others have not (frustrating as ever). Now don't get me wrong, she didn't love the buggy today, but with various distractions she wasn't in and out anywhere near as much as she could have been. I love Park Hall because everything is close together and there are plenty of places to sit (pitt-stops where I can get Elin out of her chair if needs be) so we don't need to stress her out too much. Today, despite the warm weather, she excelled herself. In fact we were there from 10:30 until 4:30- unheard of! So proud of her! How wonderful to be able to be 'out' and enjoying ordinary school holiday family activities without Elin becoming too overwrought. Determined to continue daily 'buggy activities' so as not to undo all the hard work Elin, her teachers at school and her physio's have built up during term time. So far, so...not bad :-) :-)