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Friday, 29 June 2012

Poorly child at home, not much else to do except cuddle.. and tidy!

I was really quite worried about Sasha last night, as she had a temperature of around 39 at bedtime, and rather than falling asleep she was drowsy for around 3 hours. As she was only semi-conscious, I did actually manage to drop some calpol into her mouth with a syringe, and I think most of it stayed in. It shows how ill she was that I was actually able to get that syringe anywhere near her mouth. With the last squirt she realised what I was doing and cried loudly, almost choking it back up, and then started to refuse her water in case it was more medicine. She did get a little bit delirious, and I have to admit I got some clothes ready in case I had to dash off to hospital with her.
Despite the fact I can't remember the last time she took some liquid medicine (all she's had in the past 2/3 years or even longer is 2 suppositories), it seemed to have no effect. Is her body just strong enough to fight all these infections off by itself?

Last time I took her to the doctors to get her chest examined (she is prone to coughs), the young doctor started to explain that he could prescribe anti-biotics but they don't really like to - then came a long spiel explaining why not, that I've heard before. I just replied that I didn't want the antibiotics, as I had no chance of getting them in her anyhow. 'Medicine is disgusting' - that's her line, and she's sticking to it. Even when she's really poorly, it upsets and stresses her even more if we offer medicine - it's like we're trying to poison her or something!

Anyhow the doctor stopped, looked at me, and asked what I thought I would do if she did ever really need medicine. I could honestly say that I had no idea. Really I hoped that he, or someone else in the medical profession, would be able to provide that answer!

It made me stop and think a bit more about it - and the next step was to google. I found this amazing post on the subject over at Moody mommy's blog and would urge anybody who thinks they could make my child take medicine to go and read it. It would appear it's not just limited to children with autism, not that that makes it any easier to handle.
Sasha only ever drinks water (usually lots of it), and has a limited diet otherwise of things like mini Pepperami sausages, bananas, weetabix, sandwiches, crisps, chocolate and chips. Oh and occasionally pizza and a bit of ham. No yoghurt, no juice, no ice cream, no sweets, nothing in fact, that you could hide a bit of medicine in. It's a real worry. However seeing as it seemed to make no difference this time, maybe we should just quit trying and worrying about it?
Her temperature didn't drop until about 2 in the morning, and then only a little bit. Enough to come downstairs and watch recorded TV shows for the next 2 hours though, ho hum. When asked if she was well enough for school in the morning, she replied 'I'm too poorly. But I want to go to school for pizza and chips'!! Her Friday school dinner - at least now I know I'll never have trouble getting her in on a Friday :) She didn't go in though; has needed to rest all day.

All of yesterday evening and night, as I sat and slept by Sasha's side, I felt terribly guilty though, of getting so worried about 'just' a high temperature. I know there are so many more parents out there who have worse things to worry about, and who wished it was only a temperature for their child. To them I send virtual hugs; I only wish I could help more.
There were so many images of today I could have posted, such as our lounge taken up by makeshift beds again, or Tamsin's playdate with Isabella which was lovely, or the mad changes in weather - but I picked this one:



May not look much to you... but it's a carpet!! Yes, a carpet! In Tamsin's room!! Due to a million soft toys plus other small debris I had almost forgotten there was even a carpet there..... it's not perfect now, but boy does it look a lot better after my 1 hour 'spring' clean than it did before.... my room next then :)
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Respect others. Spread awareness.

A blog post within the parenting community has recently stirred up a lot of anger, with support both for and against what was written. Without going into too much detail, it was to do with some school children being promised a reward for good behaviour, but when one parent complained that it wasn't fair that their child couldn't have the reward, then for fear of litigation the reward was taken away from the deserving children.

Put like that, I think most people would agree that the situation is actually not fair for all those children who were promised a reward in the first place.

However as comments were left on the post, it was suggested that it was a child with special needs who was not being 'allowed' to share the reward.

I've always said that I'm a 'sit on the fence' kind of girl. It's not because I don't have conviction (I certainly do when it comes to my own children!), but more because I feel I try to look at everything from all sides of the story.

Recently I posted about the fact that my elder daughter was picked to go on a special school visit to see the Queen. Partly because she is consistently well behaved (although not overly confident or outstanding in her class, one of those who falls 'under the radar') but also party through lucky dip lottery. I was obviously delighted for her, but I know that there were other parents whose children were not picked, who thought that it was 'not fair'. I could sit back and say it's 'not fair' that I know my youngest child would never have been picked to go on such a special trip, as her disability would have made it very difficult for her and others. That's not bad behaviour though, she's not naughty, it's just how she is affected - is that 'fair'? No, and it obviously saddens me, but I wouldn't dream of suggesting the other children shouldn't have been allowed to go just because she can't.

Comments were suggesting this was what had happened in this case.

Lately I have been commenting less on other 'big issue' posts as I think more about the consequences of 'jumping on the bandwagon'.

I know I've been guilty of it in the past - when you are passionate about something, feelings explode and things are said which cannot be taken back. It's true in real life as well as online, of course. My two favourite expressions from my mum were 'if you can't say anything nice, then don't say it at all', and 'don't write anything down on paper which you wouldn't want to be read aloud and shared'. Obviously I've ignored that advice a few times (sorry Mum!) but I do think it's generally good advice.

The trouble is, that we don't all know all the facts of any story except our own. Having a child with special needs really has opened my eyes in that respect. I know that before we got Sasha's diagnosis, I didn't really have much of a clue about what autism was. I also wasn't really aware of the vast range of special needs that some other children, and adults have, and the complications to everyday life that go with that. I wasn't faced with it, therefore I didn't have to think about it.

Most families have their own problems to deal with, and this could be anything - special needs such as autism, or dyslexia, or hearing issues, or feeding/organ issues, but also right through to alcoholism, mental illness, poverty, loss of loved ones etc. We can't necessarily see them or know about all of them. Who's to say which of these issues is 'worse'? 

We don't know who is having to deal with what at any given time in their life, so personally I try and respect others. I'm not perfect though obviously, and so I don't get it right all of the time. Everyone has it in them to be little bit selfish; I just think we need to try and contain that as much as possible.

Statistics say there is a fair chance that Sasha will get bullied due to her special needs, but I'm really hoping that the peers in her year will learn to grow up with her, accepting that she is different, and taking her for who she is. It brightens me to see that happening already at school; long may it continue. 

I really hope that we can all come together and help spread awareness bit by bit, so that the world grows into a more tolerant place, and one where there is less anger and blame. I'm aware this means also taking the discussion off line for those who are not fans of modern technology, and when I have more than a second spare to myself that's the direction I'll be headed in.
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Wednesday, 27 June 2012

Oh What A Night... and #britmumslive!

Oh what a night and phew what a week! I can't let the passing of my 40th go unmentioned - thanks to all my buddies for joining me at a crazy Abba show and then boogying for as long as our legs would let us....


Something tickled me today - in the car on the way home from school, I suggested having one of the boys from Sasha's class back for a playdate (at her request) and Tamsin screamed 'no! no boys!' but then quicly followed it up with 'Sasha and *insert boy's name* sitting in a tree, K*I*S*S*I*N*G!' (can you tell she's just got to THAT age?!). 

Slightly amusing but it was Sasha's response that made me giggle - 'no way, hose-ay' she quickly replied! This from a girl who hasn't yet really mastered the English language to the extent of her peers (although I think her Spanish is better than most... thanks Dora!). Even more amusingly, she followed it up with 'easy peazy lemon squeezy' when I told her she was funny!

Anyhow there's so much I'd like to blog about but really I've just popped on to do a quick post about my Britmums Live! experience.

This is the conference held last Friday and Saturday in central London for lots of 'bloggers' - people like me, writing about all sorts of stuff from food, to crafts to parenting etc. There were over 500 of us there! Before I went, I was most looking forward to hearing the two 'big' names speak - Ruby Wax and Sarah Brown. Neither disappointed, but the session I enjoyed the most was the one called 'Crossing The Chasm - How to bring your blog to the next level'.

This was hosted by five bloggers who have all amassed big followings - Nickie from Typecast, Jane from Northern Mum, Melinda from Her Melness Speaks, Michelle from Mummy From The Heart, and Maggy from Red Ted Art. I knew and loved all these blogs before we went to conference, so it was great to see them in 'RL' (real life!). Plus, Nickie and I went to primary school together, but have not seen each other for over (gulp) 28 years, so it was amazing to be able to give her a hug again.

In short, deep breath, this panel's advice was:
  • Back it up!
  • Make people laugh or cry to get your post shared
  • Have a reason for the blog to exist
  • Have good content
  • Grammar and spelling are very important
  • Be truthful to yourself
  • Be consistent
  • Be confident about your own blog and your own voice
  • Don't care about the divas
  • Blog design is important
  • Be generous - help and encourage other bloggers
  • Evoke reactions - create discussion
  • Don't be a groupie!
  • Accept not everyone is walking in the same direction
  • Be an individual
  • Think 'I Can Do This'
  • Stay true to yourself
  • Have conviction
  • Realise everyone is different
  • Appreciate it's not all about trail-blazing
  • Widen your network (social media/non-parent bloggers)
  • Inspire people
  • Be passionate
  • Build community by showing personality
  • Use good photos
 Last, but not least, probably my favourite comment was 'Mix it up a little and let it grow'.

It's all common sense, but sometimes it's difficult to find the time to sit still and think it for yourself. So I found it really helped having these inspiring ladies spell it out, and boy am I glad I wrote it all down! I think a post on 'confidence' may follow shortly.... but I'm sure I will refer back to all of the above comments continually throughout my blogging life.

I'd like to make one last mention though, and that is to a special lady who helped make the conference a fabulous experience for me. Her name is also Steph (handy for being able to introduce ourselves as 'the two Stephs'!), and she agreed to meet me beforehand as neither of us had met any other bloggers previously. 

Steph blogs over at Was This In The Plan? (www.wasthisintheplan.com) and I'd urge you to go and read her blog. During the conference she spoke passionately about wanting to help the Children's Hospices which do such an amazing job for so many. I hope I can help her with that in the future too. For now, I'm leaving her with this memory of our short but fab time together:


Edited: Just because I knew I would forget something.... a massive 'Thank You' to these lovely ladies who let me tag along for some noodles on the Friday night, despite only having just met me and not knowing if I was a complete loony.... Renata who blogs at Just Bring The Chocolate, Hayley from Downs Side Up, Jenny from Cheetahs In My Shoes, Ren from Fabulicious Food. I only wish I could have been there at the close on Saturday to hear Hayley read her brilliant blog post What to Say When a Baby is Born with Down's Syndrome which I know caused a few watery eyes.....


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Thursday, 21 June 2012

Britmums Live - ready to jump off a doll's house!

So. BritMums Live! is tomorrow. The conference I booked myself a ticket for nearly 6 months ago (or so it seems). Finally upon me.

Am I prepared? Business cards printed, agenda sorted, made my list of who I'd like to meet and where/how, decided what to wear and what bag to carry?

Nope.

Not even a clue so far as to what time train I need to catch, or where to head for.

Right now I should be sewing Brownie badges and nametapes on uniform for Tamsin who has a sleepover tomorrow night (helpfully at the same time I'm away, well planned there...). Sewing has been on the list of 'Things To Do' for a couple of weeks at least. It doesn't seem to have moved any nearer the top in that time - excpet right now it's jumped into the 'URGENT' pile.

And don't get me started on thinking about how I am going to manage Saturday afternoon's quick turnaround of train back from London, into Abba costume and taxi zooming into town to meet my 28 girlies for my birthday booze-up (well, it was my 40th, didn't I mention??!).

Ho hum. Having said all that, I'm so excited I could crush a grape!! Or rip a tissue! Or.. or... zzzzzzzzz. The tension is building so much I'm scared I may just sleep in and miss it all. Ha.

Anyhow, what am I going for and why did I book the ticket again I hear you ask?

Tomorrow Ruby Wax is speaking and I am REALLY looking forward to that. On Saturday Sarah Brown will speak and I'm REALLY looking forward to that too.

I'm so excited to have already arranged to meet up with a great mum whose blog I think is wonderful. I know I'm going to be able to say hello to the lovely Butterflies, and I've followed all of their blogs for a while too. It's a bit daunting, coz it's almost like you know people already but then really not at all if that makes sense?! 

I also finally need to get someone to explain the 'nofollow' rule to me.... 

And then there's the main reason I bought the ticket in the first place - to meet my old primary school friend, Nickie who blogs at www.iamtypecast.com. She still lives up North, nearer to our hometown than I do, and she is now considered blogging royalty - should I curtsey when I meet her I wonder? We've not seen each other for *several* years now so I wonder if we'll get chance to talk about just the past or bring it right up to the present?! 

Of course, that's what's great about blogs - they give you a little insight into other people's lives. Love it. Or as the phone box I saw in London on Monday night said: 'Live. Life. Love.' 
I never did see what was round the other side, but I'd like to think it was 'Lots.'


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Sunday, 17 June 2012

Sasha's 5th Birthday and Father's Day!

Here's some of my favourite pics from this weekend (collage courtesy of the fab Picmonkey):




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Thursday, 14 June 2012

Hello Queenie!

Today was a special day. Our eldest daughter Tamsin was selected to go off to see the Queen!

OK, admittedly she didn't really get that close, and there were hundreds of other school children there, but it was the excitement of the day that carried everyone along. She insisted on taking cucumber sandwiches as her packed lunch:


Apparently she loved waving her flag wildly, and laughing at the funny policeman who (allegedly) was cycling along on his bike not holding the handles and pulling funny stunts....???!!! Sounds like a good day was had by all!

I was pleased to be able to wave their coach off at school this morning (only because I had forgotten to take Sasha's water bottle in, so had to go back with it, ooops). Here she is on the top deck (right in the middle. I know you can't really tell, but I promise it is her):



Mostly though, I was pleased that Tamsin was selected to take part in this trip. Only 5 children from each class were chosen, and we were told that the teachers put the names of children who are consistently well behaved, cooperative and have a positive attitude to all areas of school life into a hat. So whilst there was some luck involved, it was a proud moment to know that they considered Tamsin to be one of those lovely children.

Of course that pleasure was tinged with a fleeting moment of realisation that even if Sasha had have been old enough (they decided not to take Reception children), it is extremely unlikely that she would fall into that group of children. Not that anyone thinks she isn't lovely of course, but I do think the words 'consistently well behaved' may pose a slight issue. It's not her fault though.

For me it was also warming to know that Tamsin would be getting a reward for her behaviour. A treat, to make up for the fact that her life is a bit more difficult than that of some of her peers. She couldn't go along to the local street party this year, we couldn't take her into London to attend the Jubilee Family Fun day or see the Flotilla, and there are many more times when we literally can't attend things other families take for granted. There are also those times where we try, but she has to watch as her sister is taken home - for example when we tried the Circus, or Fireworks Night etc. 

Next Month the Olympic Torch will pass through our town, but unfortunately Mr C will be away that day. I'd love to take the girls to see it, and I know Tamsin would appreciate it, but to Sasha the crowds, and the cheering, and the waiting around would all be a nightmare. With only one adult, that means we're unlikely to stay the distance - it's really not an option to keep Sasha there against her will. I know several adults who would say that they are in charge, and therefore Sasha would have to 'like it or lump it', but they are the ones who don't understand. Who have never spent a significant amount of time with Sasha. She doesn't do it to be awkward; the noise and the excitement build-up and the lack of understanding all cause her more than minor issues.

I understand. Of course I'll be disappointed not to see the Torch myself, and I didn't particularly want to sit on a wooden bench in the foyer of Wembley Arena while Daddy and Tamsin watched Disney on Ice, but I've learnt to get over these things. It's not the end of the world. But for Tamsin it doesn't necessarily make sense that she has to miss out. That's why I'm so pleased that today was a special one for her. She deserved it.



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Tuesday, 12 June 2012

Dum, de dum dum...... Techie Whizz, moi?!

Sometimes, just sometimes, I have to laugh at my own stupidity.

Today I took a trip into the big City to get my lovely little phone looked at. The camera has been playing up for 3 months or so, freezing just at the moment when I have the perfect shot. It eventually kicks back in, but it is very frustrating to miss all those photo opportunities.

So today I finally got around to do something about it. I booked an appointment at the lovely big store in Covent Garden, turned up on time and was seen promptly. Customer Service is just brilliant; am sure a lot of companies could learn from them.

I was offered a replacement phone or a replacement camera instantly with no quibbles. I quite like my phone as it is, so I decided it would be worth a try replacing just the camera at first, and if that didn't work then a new phone would be mine (see, I'm not greedy).

My phone reappeared very quickly with the new camera fitted; we tried it and all seemed fine, so I shook the lady's hand and toddled back off to the tube station.

Once on the tube platform I thought I could take a photo to mark the occasion for my 366 pictures blog (click HERE to see that one!) and so I whipped my phone back out of my pocket, pointed, and.... saw this:


I clicked a few times, but was still getting the same bluey pinky tinge, and so as the tube pulled in I had to quickly decide if I had enough time to return to the store instantly before school pick up, or if I'd need to book an appointment to return on another day.

As I was still just about there (although at this point I'd paid for a tube trip I wasn't going to use), I legged it back to the shop (typically that tube station has a lift you have to wait for, which annoyingly hindered my progress somewhat), ran up the stairs and insisted on jumping the (rather long) queue for help, to try and see the same lovely lady and explain that the new camera was not working. I was shown to a seat and assured I would be seen urgently. Then I looked at my phone again.

Strange, a text came in, but the ringer volume wasn't on. And the buttons to turn it up didn't seem to be functioning properly...... oh. My lovely purple case appears to be on upside down. Must remedy that. Aaahhh, I see there is a hole at one end on the back of the case for the camera to peep through.... Ahem.

Cue a very speedy exit from the shop, stopping only just long enough to apologise profusely for being an idiot. Go on, you can all laugh now.
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Saturday, 9 June 2012

Define 'Normal'. Can you? What's yours?!

After reading the brilliant Define 'Normal' Blog Hop post from Renata over at Just Bring The Chocolate today (please read, it's very funny!), I really wanted to join in and share my 'normal' with you.

Our 'normal' is two gorgeous girls, who I've just been able to share a very special half term holiday with.

We popped down to our local pub at bedtime this evening - an unusual occurrence, but then it is our 11th Wedding Anniversary, so we thought we'd treat ourselves to a little drink, and treat the girls to some chips (again, naughty mummy).

The girls played beautifully together in the pub garden for an hour, with and without our involvement - on the play equipment, and just running, hide-and-seeking and kicking a ball.





At half-time Sasha devoured a huge plate of chips with a tiny bit of help from her family:


 And Tamsin stopped to take a photo of the two 'anniversary couples':



After the break, some other girls had appeared in the garden and were kicking around the ball. Sasha had no hesitation in going up to them and asking if she could join in too. Her request was definitely heard. Maybe it was the fact that Sasha's speech is a little unclear, or maybe the children just weren't all that friendly, but they stood still for a second and then all slunk away, leaving Sasha on her own with the ball. Sasha fortunately seem unperturbed and carried on kicking the ball alone.

I winced, and was instantly reminded of the fact she has autism. Those girls couldn't have known that. She may speak a little funny, but she can be understood. Autism is mostly a hidden disability. It's a spectrum, and every child on it is different. I was immensely proud tonight of how sociable Sasha is. At the good times, she's very easy going and amenable. I'm sure everyone at school, peers and teachers, loves her. I've also been extremely proud lately of how well Tamsin interacts with her and looks after her. Together they are my gorgeous girls, individually they are different and special characters in their own right. I think they're amazing. But then again, I'm biased.

Who, or what is 'normal' anyway? Everyone is an individual, everyone is special in their own way. Embrace difference and we'll all be a lot happier.



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Sunday, 3 June 2012

A Blogging Pause has occurred; normal service to be resumed shortly.

May and June are always slack blogging months for me. Tamsin's birthday is middle of May, and Sasha's middle of June, so all the party planning, present buying and wrapping and cake making takes over for a while. Throw a few classmates parties and half term into the mix to keep me on my toes and it ends up as general chaos (no different from usual then...!).


On top of that, it's my birthday 2 days after Sasha's, and this year's happens to be a 'BIG' one, so we also slotted in a lovely little trip away as a couple to the Big Apple - oh, didn't I mention that already?! Must post on the blog separately all about that soon. Here's a pic or two just to keep you going though:
Manhattan sunset from Brooklyn

Not being evacuated from our hotel....

Seeing as I will be attending the big blogging conference Britmums Live! in just over two weeks, I thought I really should try and fit a couple more updates in before, or else everyone may wonder why on earth I am there (call yourself a blogger? huh!).

'Mummy I love you so much' were the last words I heard from Sasha tonight as I cuddled her whilst she tried to get off to sleep. She had been lying very quietly in our bed for over an hour trying to drop off, but obviously need the 'hand cuddle' to finally go (she insists on my arm being over her body and her grasping my hand in a certain way). Me lying next to her on the bed has sadly become part of the routine, and part of me looks back longingly for those days where I could just give her a kiss then walk away and close the door, knowing she wouldn't try and get up. On the other hand, there is nothing nicer than taking a break, lying down next to your child, and watching their gorgeous faces as they slowly succumb to the wonders of sleep.

Life is still up and down with Sasha - from her amazing good humour about mummy and daddy going away, followed by 4 days of brilliant behaviour for Nana and Bampi who were doing the school run (and everything before and after!), to the last day of school before our half term break where the dressing-up and Jubilee theme, along with a change of routine, really threw her and has led to some more controlling behaviour since. We managed a fantastic day out at Peppa Pig World (oink!) where she was extremely happy - but not at the point where mummy wanted to go on a 'big' ride with Tamsin.

We've been doing regular swimming lessons for the past 6 weeks, where mummy (or daddy or Nana) gets to be in the pool with Sasha for a lesson while Tamsin has her lesson up the other end of the same pool. Tamsin has been doing fantastically well, but the jury is still out on whether it's really a hit for Sasha or not. As with everything, if she's in the right mood she will participate, but usually only for a limited amount of time. Fortunately she has always been a water baby, so is fairly confident in the pool, but that was previously with arm bands. I feel the step towards moving away from being able to stand on the bottom is now a rather large on, and I'm not sure how, or if, we'll achieve that. Still, no rush. Everything at Sasha's pace is usually the name of the game, and bless her she does get there in the end. In a way, it makes her achievements all the more special for me as I can see how much more of a struggle it has been for her.

Anyhow before I waffle on too much, I just thought I'd wish everyone a 'Happy Jubilee' and leave you waiting with bated breath for the next instalment...  Smiley
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