Sunday, 24 April 2011

I don't know about you but I.....

Right then. Two posts in one evening, how very indulgent of me! However I came across a brand spanking new Meme that I just couldn't resist - see the lovely 'Oh Mammy' blog here.

I don't know about you, but I think that certain men need to get their eyes tested (again). I mean, how is it possible to walk past the same pile of items that are sitting on the bottom stair (because really they live upstairs and I've tidied them so far whilst multi-tasking at several other issues), multiple times in one day? I often wonder whether, if I left them (which of course I can't do), they would magically find their own way up?

Ho hum, am guessing I'll not find the answer to that one Smiley
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Easter has been fab! Cycling, swimming, trampolining, Olympics here we come!

Well today has been a very good day - I rediscovered my love of cycling after at least 5 years off (and the rest!!). Didn't know I had a love for cycling? No neither did I.

I did a good 6 miles, and admired the country side on my way. Not sure if it's my dodgy phone camera or my hands wobbling from all that riding, but here's what I saw...

Now I'm all excited about rides we can go on as a family, or girlie days out, or hiring bikes at Center Parcs etc. Maybe wishful thinking right now but we'll get there I'm sure.

I've hardly had a speck of chocolate all day (apart from the 2 small easter cakes which definitely don't count) so I'm feeling very virtuous and am about to reward myself with a creme egg. Smiley

The girls have been on top form, laughing and giggling in the pool and on trampoline, with only minor squabbles - usually Tamsin trying to fight the tide of being told what to do by bossy Sasha all the time! It is tough on her, but generally she is very understanding and I'm extremely grateful for that. My heart almost melted this eve when both girls wanted to go out for a run with daddy. To do this however Sasha wanted to wear the same outfit as Tamsin - white T and red shorts. Tamsin kindly offered unprompted to let Sasha have her top, whilst she found another, so all was well and the girls raced up and down our close beating daddy.

We've had very relaxed holidays, stayed at home nearly all the time, with some good friends coming over to join in the fun a couple of times. Now I'm getting itchy feet at the prospect of our second week off though, and I feel the need to venture out tomorrow. It'll probably be a complete disaster; once I've packed suncream, sunglasses, swimsuits, towels....everything, made lunch and persuaded Sasha that it'll be fun to go somewhere she's never been before, I'm sure it'll be the perfect day... who am I kidding?! But at least it'll be a change of scenery for Tamsin; I don't want her to feel like she never gets to go anywhere different.

The thought of queueing for rides or attractions does fill me with dread - Sasha still doesn't really understand this concept but of course looks old enough now that she should. We just have to try and go with it, have a plan B, and always be able to leave somewhere if it's not working out - which is why I often find it difficult to meet with friends outside of the house, especially those who don't understand. 'Home Sweet Home' as Sasha reminded us today - certainly is for us. Unless of course Sasha is asking consistently and insistently if we can visit a 'holiday home' or Nana & Bampi's house - but more on that in another post!
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Tuesday, 19 April 2011

The Grass Is Not Always Greener.....

OK so my last post about a fridge was a little boring, I'll admit it. Sometimes there's just so much to say I don't know where to start though - and OH says I already spend too much time on the computer so I have to limit myself somehow!!

I've just been in floods of tears whilst watching a programme on BBC3 called 'So What If My Baby Is Born With....'. It's all about Jono Lancaster, who has something called Treacher Collins Syndrome - google him or it if you want to find out more. Basically he has a genetic condition which affected the way his facial bones developed. The programme was all about him and his girlfriend trying to decide whether to have children - i.e. could they be sure the child wouldn't have the same condition and face the same years of bullying and operations etc.

Of course there's a whole lot more to it that that, but the bit I found particularly difficult to watch was when they met with a couple who had a 2 and a half year old girl with this condition, without any history of the gene themselves. They had to change her tubes for breathing and feeding regularly, and whilst to them it had obviously become second nature, I really can't imagine how they cope.

I know there are so many families who have to deal with illnesses in many different ways, whether it's repeated epileptic fits or bone marrow transfers, and of course they are strong for the children because they have to be. Just because they put on a brave face, doesn't necessarily mean they are coping well on the inside. I guess what I'd like to say, is that I hope everyone can be tolerant and understanding of others. Sure we all have (and are entitled to) our up and down times, but there is generally someone worse off than us.

Sasha is a very happy, generous, adventurous, loving and polite little girl - and I could think of a lot more adjectives to go in there! We love her exactly how she is, and as many people say, wouldn't change her for the world. If someone had told us before she was born that she would have autism, would we have been more prepared for the battle ahead? Would we have wanted to face that? It's a very difficult question, and I don't think anyone can answer it without being in that situation. We didn't get the choice, and in a way I'm thankful for that. Do I wish Sasha didn't have autism? Well yes, because I know she is going to face many struggles in her life that others won't - fortunately most of these she has no idea of as yet, but as she grows older they will become more apparent. Partner, work life? Just two big issues a long way in the future.

BUT. If Sasha didn't have autism, then she wouldn't be Sasha. And that's just not right. We have been blessed with 2 gorgeous girls, and for that I am very grateful.

Now someone pass me the tissue box Smiley
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Thursday, 14 April 2011

Fridge Contents (yes, you read right!!)

Now all my non-blogging friends will think I have gone mad.... but I've been 'tagged' and so I really do have to divulge the contents of my fridge. Actually I'm a nosey person at heart so I've enjoyed having a laugh at some of the others. Particularly pleased to see that Scottish Mum who tagged me, also has a HUGE fridge :) It's one of the best things in our house, and even though it's not particularly packed full at the mo, it often can be - and yes, there's only 4 of us!! Hey ho, here we go...

hmmm, yes so now I really do have to list it all....
In the door there is:
3 open bottles of wine (nothing to do with me guv)
orange milk, gap where blue milk was and will be when I buy some more later, apple juice, orange juice, orange and mango juice, ketchup, mayo, salad cream, orange marmalade, lemon and lime marmalade (yum), raspberry jam (seedless and posh), lemon juice, half drunk coke bottle.

On the shelves:
2 boxes of eggs, water bottle, pot with pineapple in (my new addiction), music snacks, philadelphia, dairylea tubs
Dairylea triangles, babybel, sandwich box ready for Sasha's nursery trip later (although she's told me she's not going), butter, marg, can't believe it's not butter
Pepperami sausages (lots of), bowl with remains of tuna in, pasta pack, bacon
Another pasta pack, wraps, grapes, juice cartons
Lonely bottle of wine on rack, lemonade
salad drawer - usual suspects going brown
beer drawer - I honestly never open this!

So there you go, thrilling isn't it?! I don't think I know anyone with time to waste (and that includes me!) but I'm going to tag @MumForAutism @savvymum4autism and @Jax2000 as she has a domestic thing going on.... If any of you have already done it, sorry I missed it, and if you don't want to, that's fine too!!
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Wednesday, 13 April 2011

#specialsaturday - and a wobbly tooth!

Well we have a wobbly tooth in the house! The first one, yay! Tamsin has been waiting a long time for this, and has been feeling sorry for herself since nearly all her school friends have already lost numerous teeth. Now she's uber-excited and can hardly sleep, so I hope it doesn't hang on in there for too long! I'm pleased for her, but at the same time it's just another of those signs that she is growing up, and won't be my 'baby' for much longer :(

There's an amazing lady called Wendy who is doing her best to raise awareness of Special Needs.

Despite having enough of her own worries, she is keen to get the message out there that these children are special in lots of ways, but that they need the understanding from everyone in order to be able to succeed. She's asked for posts about achievements, so I thought I'd share the following which Sasha has done today:

Sasha called me into the room to see the snake jigsaw which she was in the process of putting together. This is a double sided wooden snake with numbers on one side and the alphabet on the other. Sasha loves her numbers and has completed the numbers side a few times, but could never be tempted into doing the letters side. However today she had great fun fitting them all together, several times, singing her 'abc' song after every letter to work out the next one. And whilst she wasn't quite right with 'p is for mummy', she did get 'S is for Sasha' and 'T is for Tamsin' totally unprompted. Every time she completed the puzzle she would count to 10 and then do a little 'Dora' dance, followed by a bow. It may seem a strange spectacle to other people, but to me it's just cute :). She is more than capable of learning, but the issue is that it needs to be on her terms, and for that she needs to be surrounded by understanding people. Fingers crossed for her start in reception in September......
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Tuesday, 12 April 2011

a b c, abc and the wonders of modern technology

I've been inspired to post this by the lovely Hanabi boy blog - another family with a very special child. The boy in the blog loves his Elements (as in the table!) and has found a Japanese song clip on YouTube which keeps him happy. Go see it, it's great! I think we should get an English version now...

Anyhow it just reminded me of how I thought it would be very difficult to get Sasha to learn and understand letters, as numbers are her favourite thing and it's difficult to distract her from that. Thanks to YouTube, and the following clip, she's come on leaps and bounds.

OK so she says 'zeeeee' rather than 'zed' but anything goes as far as I'm concerned. Although in the same vein, as a true Northerner I'm not overly happy that Tamsin now says writes 'arsk' rather than 'ask' and barth not bath etc... Just so wrong.

Another slightly more annoying alphabet song is the second favourite...

Least said about that the better! I'm still amazed at what Sasha has been able to find and learn from on YouTube - fortunately all good so far, but I do keep an eye on it. Anyhow I'm glad that modern technology has helped teach Sasha lots of things - TV, DVD, computer and iPad are all big friends to this house!
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Monday, 11 April 2011

Special Needs education - what choice?

So it was almost a great start to the day. Sasha hadn't noticed that I'd allowed Tamsin to wear her school summer dress for the first time this year (after asking her not to make a song and dance about it so that Sasha didn't get jealous as she's not allowed one...). I slipped the polo shirt over Sasha's head quite quickly, no problems there, then Sasha decided she wanted to put her own tracksuit bottoms on (funny, Tamsin would still like me to get her dressed even now!). She managed very well, stood up to pull them up, then... d'oh. Mummy realised I hadn't yet changed her night-time nappy. So I had to take trousers back off again, not a popular move, get the clean nappy on, and then.... 'pyjamas please'. 'But pur-lease'. Cue lots of running off, upstairs, trying to hide in the bed etc. Had to grab her and put her in the car in just her nappy & polo shirt. Thankfully she didn't relish the thought of walking in from the car with no shoes or trousers, so I did manage to finish getting her dressed in the car at school. We'll see if she remembers and repeats tomorrow...

I'm kicking myself today after our local Lib Dem candidate came and rang our bell at the weekend. I didn't say very much to him, as I was in the middle of something with the girls, but now I dearly wish I'd questioned him a bit more about the educational offerings for Special Needs children in our county.

I've found out recently that a child Sasha's age will be starting at a special school for dyspraxia in September, where the class size is just 10 and there is a lot of support staff available. Sasha on the other hand, really only has 2 choices - either a mainstream school with no special unit attached or a MLD (moderate learning difficulties) special school. In my mind, Sasha really fits somewhere in between these 2 options, with neither offering her the best chance to develop her potential. I still really don't know what to think about it all. Is it fair? Dyspraxia is a disability which affects movement and co-ordination. It leads to problems with language, perception and thought. However Sasha's disability also affects her language, and her ability to learn on those days when she can't cope, and she certainly will need extra help at school. So why is there a special school suitable for one type of Special Needs child, but not another? It's not even as if autism is a rare condition - the stats say 1 in 100 children will have autism. I think it's a real possibility that Sasha will not 'fit' into mainstream as she grows up, and I know Mums of older children have turned to homeschooling at the secondary stage because of the lack of options. Although my own mum was a teacher, it's not something I ever thought I had the skills to do, and I can't imagine teaching Sasha at home would be the best option for her. Maybe we need to start campaigning and saving now to build our own secondary school for autistic children... someone help me win the lottery please!
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Sunday, 10 April 2011

Pyjama Day update... thumbs up!

So at some point over the last week we hit a lucky happy phase with Sasha, and the following picture shows just how happy she was to go to school with big sis Tamsin, dressed in her brand new (pat on back mummy) Peppa pyjamas:

Phew. Could have gone either way, but of course she was happy as anything, so no doubt people wonder what I make a fuss about :).

After that exciting morning we then went on to change the routine further, and threw in a random play in the playground after collecting Tamsin from school - via a friend's house for even more variety. The playground was packed to bursting but even that didn't seem to worry Sasha, and both girls had a lovely time. Of course it wasn't a particularly relaxing experience for me; I'd love to sit down, have a picnic and a chat with the other mums & dads, but the chances of Sasha staying in one place for even 5 minutes are pretty remote! She would quite happily walk off/out of the gates and keep going without a backward look - it's difficult to get her attention without being directly in front of her. Everyone probably thinks I'm just over-protective, but hey-ho, do what I have to!

The funniest thing that day for me was when Sasha burst into song in the middle of the playground. Her chosen tune? Tie Me Kangaroo Down Sport !!! Picked up from the Wiggles video she's been watching lately I guess! No-one else around picked up on what she was singing, but it did make me giggle....
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Wednesday, 6 April 2011

Pyjamas for school? Why ever not?!

OK, so here's a question for you. How do I explain to my autistic 3 (nearly 4!) year old girl the following:

That because somebody at the school thinks it's a good, fun idea to wear pyjamas for a day to raise money, yes she can actually go to school in her pyjamas not her school uniform for once. But no, she can't repeat this event any other time, because although it is allowed on Friday the 8th, it isn't allowed any other day. Where's the logic in that to someone who doesn't understand conforming and is trying to learn social skills which come automatically to others?

The start of every day is still difficult for me - it's always hit and miss as to whether Sasha will be happy to wear clothes or not. Well actually not happy with, just OK with. She doesn't like the uniform but bears it, and it all gets taken off the second we get home, every day - not just when it's warm like today! She has often asked to wear her nightie to school before now, and of course I've had to say 'no, because you must wear a uniform for school'. So now I'm about to do an about turn - for one day only. She's actually only been wearing a nappy in bed for the last week - don't think they'd want me to send her in just that, although it wouldn't bother her! So I've had to buy some new Peppa Pig pyjamas especially for the occasion to a) entice her and b) keep separate from 'normal' bedtime clothes... Except when I did, the weather was cold and wet. Now it really is warm enough to go in nothing and she'll be way too hot in the new PJs!

There's no point in me trying to keep her off for tne day, as older sister is of course absolutely delighted with this crazy idea and can't wait to show off her HK pyjamas to her classmates - and why not?! For every NT child, its just a bit of fun. For Sasha it's just confusing. For me it will be an ongoing nightmare for some while to come. And so yes I groan, but will have to grin and bear it and make the best of a bad situation.

I'm already apprehensive now that the lovely warm weather has arrived, as eldest daughter just can't wait to be allowed to start wearing her school summer dress. With that comes another headache for me, as youngest daughter would love to be in a lightweight, non-fitted summer dress. But no. School uniform rules say nursery children must wear a White t-shirt and ridiculous elasticated red shorts which are of the one-size-fits-all variety, and yet are already too tight on the waistband for Sasha's liking. Health and safety apparently, in case a floaty dress gets caught on the ever-so-small climbing frame they make use of for 5 minutes a day... Sometimes. Grrrr. Think I need to start a mass mutiny. Except I love the school they're at really! Just wish somebody could make my life a little bit easier!

Am v tired at the mo so I've not written well and not sure any of this will make sense to anybody else... But wanted to say I'm not usually such a killjoy, I promise!
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Tuesday, 5 April 2011

Deely Boppers Update

The Deelyboppers obsession has not yet passed, so I thought I'd share this photo of how Sasha went to bed tonight - she was happy to remove them from her head and just have them on the pillow next to her before I left, thankfully!!

There was a Mothers Day Assembly in nursery this morning. Sasha was very unsettled again, just like the last time, due to the completely different layout of her room. She didn't join in with the songs or actions, but thankfully didn't create a fuss either (until afterwards, when she wasn't happy to let me go!). I wonder whether it'll be any better when the assemblies/concerts are done in the main school hall... on the one hand it won't be her normal everyday environment so she won't expect it to look the same, but on the other it's such a bigger, more imposing space, that I can't see it going much better! It's such a shame that she's never likely to get a 'starring' role in anything, or even get to sit in the middle as opposed to right at the side, as it'd probably be too much of a risk for them to take, not knowing if she was going to join in.... still, we'll see! Not giving up hope yet :)
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Sunday, 3 April 2011

Mothers Day Thoughts

Mothers Day has been a nice day, spent with my lovely daughters and husband. I wish my own Mum lived nearer as I miss her, but I'm very thankful that I still have her, and I so appreciate all her advice, support, care and love. I hope my own girls will always love me that much too. It's a difficult day for many who no longer have that support, and my love goes out to all of them too. I wish I could hug them all, but I'll have to make do with sending virtual hugs.

I've always so much I want to blog about, but so little time to do it - not least because the computer is one of the most interesting toys in the house, so whilst little girls are awake I rarely have first call on it! Sasha has only just gone to bed; after crying and begging to be allowed back down to watch TV when we took her up at bedtime I actually gave in and so she quietly watched the requested Angelina DVD. Sure most parents would think me crazy giving in, but the thing is that she is normally SO good at bedtime that I see it as a reward for good behaviour rather than bad (or at least that's how I kid myself!!). I was happy that she came to me at the end of the DVD and say she was ready for bed - not something Tamsin would ever do!! Of course there's always the slight fear that she will want to repeat the behaviour, but it hasn't really happened yet (I'm frantically grabbing at wood now...).

It is difficult to explain why we need to be flexible to other mums, and I only really understand why they're unlikely to understand because the parenting style has to be so different between Tamsin and Sasha. It's a juggling act, and I'll admit we don't always keep all the balls in the air. I have somehow become fairly good at my circus skills though....

Little things make Sasha happy, and that makes me happy too - like today, after watching the highly entertaining 'Mr.Bloom's Nursery' (dare I say it, VERY weird crush alert...!), Sasha was desperate for a pair of 'deelyboppers' (if you have no idea what I'm talking about click here for a great website I've just found!) just like Margaret (the cabbage) wears in one particular episode. She knew of course that we had such a pair - what we didn't know was where they were, having not been used for months. Mummy struck rich though in the depths of the dressing up box, and it was worth the extra effort to see the smile on her face. I only wish I'd taken a photo to share with you. In fact she has gone to bed grasping said deelyboppers and I'll have to sneak in later to retrieve and make sure she doesn't injure herself on them during the night!!

So a quick Statement update - we did in fact receive the paperwork in the post saying Sasha now has the SEN Statement of Special Educational Needs. In reality this is a big long list of what the classroom teacher needs to do to help Sasha specifically - how she will actually find all this extra time when she has 29 other children to manage, I really don't know. But obviously Sasha has to be my main concern, and there are pointers in there which should help ensure everything goes smoothly - if they are followed. We are extremely lucky to have found a good school, where she already attends nursery, and I just have my fingers tightly crossed for everything to go right for Sasha in September. We'll see. The statement gets reviewed every 6 months under 5 years old, and then once a year after that, so there's not much rest from all the paperwork for us just yet.

A bit non-parents may not want to read now :)
Happy news for us - Sasha has agreed to put big girl knickers on for about 4 of the last 6 days or so! Not for a whole day, just a few hours per day at most, but it's a start. Considering her complete anti-knickers and anti-toilet stance which is why we've held off toilet training, I'm pleased we're getting somewhere. It did mean however that I spent 2 hours of Mothers Day on potty alert (i.e. following her round with the potty, and watching her like a hawk, with no result), and in the end as we needed to go out, we went back to the nappy (as she wouldn't go otherwise) - and then of course she promptly did a huge wee in it! We've had 2 accidents during the knicker-wearing time, one of which included a 'number 2'; that surprised her somewhat! However as I think she has been worried about the 'poo in knickers' situation, at least it helped her to see that it's no big issue. It's only a small step, which I know most other mums would not think worth celebrating at the age of nearly 4, but to me it is a huge step forward. I'll keep you updated on any progress, I'm sure you'll be delighted by that ;)
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