Wednesday, 30 March 2011

This Is Me Meme Update.......

Just a quick update to my last post, as I now have Tamsin's finished version... I asked her to draw a picture of me, and she provided the following:

The first one is me just having got out of bed, the second is me after putting my socks on (you do have yellow socks, don't you mummy? er, no), and the third is me getting ready to take them to school, having put my lovely brown boots on (see earlier post here). Love it  Big Grin Smiley

Just re-adding Sasha's pic here in case anyone didn't see it...
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Sunday, 27 March 2011

This is Me Meme

So today the lovely Fi at Welcome to the Madhouse has tagged me in my first ever Meme and I'm chuffed to bits, especially as it's such a lovely one.

This is the deal:
  • Ask your child to draw a picture of you. It doesn’t matter how old they are…
  • Post the picture on your blog.
  • Call it the ‘This is Me Meme’.
  • Pop over to here and add to the linky.
  • Then tag some others
Well I'm cheating slightly, (as I'm not sure she would have understood the question), but here is BY FAR the best picture Sasha has ever drawn - all the rest tend to get scribbled over or are just lots of different colours on top of each other. I'd like to think it's of me as the big smiley face is a give away :)

Actually it was a fairly good copy of  random face picture which Tamsin had done... But I fully intend to ask Tamsin to draw me properly when she's a little less tired (next year, maybe...!), as I'd love to see that picture too.

hope the following people with blogs which I love reading regularly don't mind me tagging them...

Gemma from helloitsgemma

Jax from mummy's little monkey

Marilyn at softthistle

and Jontybabe at It's A Crazy World

if they haven't already done it!!
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Tuesday, 22 March 2011

Statement - yes!

So right now I'm saying woo hoo woo hoo very quietly and skipping on the inside, as I've just spoken to the SEN Officer who has told me Sasha will be getting a Statement. Just hope I'm not celebrating and posting this too early, as I normally don't like counting chickens before they're hatched, but I wanted to capture down the relief I feel at getting this news right now.

Sure maybe the happiness will be shattered when I see the actual paper in a few days time, but I'll enjoy it for now. Sure this is not the end of the battles, but the biggest hurdle has been leaped and I'm actually so happy I could jump off a doll's house!

Yet to see what sort of support they are actually suggesting, so I'd best cut this short and hold my horses for now, but Yay!

(Sorry for all the cheesy 'sayings' too :) )
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Saturday, 19 March 2011

Special Needs - ASD

This week I took Sasha for her 6 monthly check with the paediatrician who first diagnosed her back in January last year. She admitted that she does believe Sasha will need a Statement of Educational Needs (SEN) and that Sasha is one of the more 'challenging' autism cases on her case load. Although it's difficult to hear, I do like her honesty and I feel that because of her experience she has really 'got' Sasha despite only seeing her in short bursts. Some people who spend more time with Sasha than that will probably never really understand.

It was a bit like being hit over the head all over again, and I think it really is only just now that it has finally dawned on me that we do indeed have a 'Special' Needs child. Of course both are children are very special in their own funny ways but Sasha will not grow up in the same way that Tamsin does. Sasha's autism is challenging in the way that she needs to be in control of everything (and what toddler wouldn't like that?!). She doesn't have the particularly bad behavioural problems which can often come with this diagnosis - she's not aggressive, she can take turns and share, she's incredibly polite, she's affectionate, her motor skills seem generally OK and she's 'bright' in some ways (especially with numbers!). I think it's probably this last bit that creates the most difficulty for her - because she can learn some things exceptionally well, and at times appears to understand some advanced concepts, people don't really understand why she can't grasp the middle bits - particularly the social etiquette and 'unspoken' rules kind of things.

Sasha has been observed to go and take toys away from other children at nursery - she'd never grab them out of their hands, but she doesn't 'get' when a child puts something down for a second or two that they may be in the middle of playing with it still. She's just not aware of it. It is difficult to justify that, because on the other hand she is very aware that if she is playing with something, it's not 'free' for someone else to use until she says so! So it sounds very one-sided, but probably to Sasha, that's what all her life is like.

I now take her to a pre-school specifically for children with autism, and despite it being new and not routine, she loves it there. After just 3 sessions they describe her as 'always happy, and it's as if she's been here for months already'. They do make her do things to a timetable, and things she doesn't want to do (like having her nappy changed!). So I think with the right people - staff experienced in (and patient with!) autism - and if the scales are rarely tipped - expectations and activities managed - then wonderful things can be done and achieved.

I've said to many people over the past year that the brain is an amazing thing, and if I ever get more than a second to myself again I'd love to go and study it. Through quick flicking I think I've picked up that it is the left side of Sasha's brain which doesn't function in the same way as the masses... or is it the right?! Anyhow it does make me stop and wonder at how easily Tamsin has learnt so many unspoken things. The worry for Sasha, alongside not automatically grasping those types of things, is that she's not 'open' to being taught by others - i.e. she is definitely 'non-compliant'!! So I can see her struggling with the basics, such as reading and writing, and it's only now that I'm realising how difficult mainstream school will be. I'm still not at all keen on the other option though, which is Special School, as I'm not sure how much this helps integrate into 'normal' society at the end. I have recently heard about a private speech and language school, and although it feels too far away to send her daily, I intend to go and have a look round to see what advice they can give. My ideal would be a mainstream school with some sort of autism or speech unit/experienced staff, but of course they don't exist - well not here anyway.

I felt the need this week to finally write and complain about the lack of NHS Speech and Language service we have received since Sasha was first referred over 20 months ago. Whilst I know Sasha is a challenging case, it somehow feels more as if we've been ignored completely for that reason, and therefore she is getting no help at all. Reports have been written, but no direct therapy received. More irritating is the fact we know of others in the same county who have already had more input than Sasha. So frustrating, and to be honest not fair, that not all the systems and processes are equal.

We are about 5 weeks into the 10 week period the council have to draft a proposed SEN. We have been warned they are trying to avoid issuing Statements and they are giving out more of the 'Note In Lieu' instead. This means nothing legally though, so if one does arrive on the doorstep it means preparing a case for appeal - more battling, as if we don't have enough of that on a daily basis already!
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Wednesday, 16 March 2011

'Thinking of you mummy' - good timing in the run up to Mothers Day :)

So I'm wondering if the bin men have a personal vendetta against me, or is it really written in their job description that they have to come while I'm on on the school run, then leave the empty bin right in the middle of the drive so I have to stop the car in the middle of the road and move it first before being able to drive?

Hey ho, not even that can dampen my spirits today - an amazing turn-around from yesterday which was another not-so-great day (more later!). I'm happy for two reasons: first, they played 2 great songs on the radio as I was driving back from the school run, Take On Me and Rhythm Of The Night. I just love old songs that I can really sing along too, pretty much anything from the 80s really - they bring back many happy memories of a time when I was young and carefree!

But secondly and more importantly, was how Sasha was when I took her to nursery this morning. We didn't really have the huge battle of getting dressed this morning (minor dissent but that's nothing!), but somehow we still ended up leaving a bit late. This means that when we got to nursery the 3 important places at the computers had already been taken (for Sasha the other 3 places sitting next to the person in control of the mouse really aren't worth having!) and so disappointment for her of course. However today she hovered watching them from behind, then turned back to give me a big hug of her own accord, said 'bye' unprompted, and then - the best bit - said 'Thinking of you mummy'! As in, I will be thinking of you, and missing you during the day, but I'm OK with that. Such a little thing to many maybe, but a huge thing for me showing that Sasha does have some understanding of emotion but can also control it - sometimes. So I left with a big grin and skipped off back to my car. Brilliant :)

Yesterday was not such a success however - when I went to collect Sasha after lunch she was wailing away in the classroom and I was called in to explain what had been going on. She had refused to wash her hands before lunch, which is strange as that is part of a routine she has been doing with all the other boys and girls for 8 weeks now. Once told she wouldn't get her lunch if she didn't, she then dug her heels in and continued have a huge tantrum, for pretty much the whole 45 minutes of lunch club. To the point where although she was finally offered her food (and she loves her sandwiches!) she just couldn't get over it and calm down again enough to eat. I felt sorry for the staff, but strangely also slightly relieved at the same time, as for me it's almost as if I've been waiting for this breakdown to come - and other people need to see/experience it in order to be able to begin to understand. The main trouble with Sasha is that she does want to have control, and I think whilst the nursery have done a good job of keeping her under their control so far, it was only a matter of time before the lid blew. The unpredictability of when that is going to happen is probably what is most difficult to deal with, along with how to calm her back down once it's in full flow. My main fears are that when she starts reception in September, and the day is longer, I'll be called in to pick up the pieces. Or else have to deal with the pressure cooker lid blowing off at home more frequently :)

To end on an amusing note, my day yesterday had more to it than that. Tamsin had been off school poorly, so as we went back at lunchtime to collect Sasha I thought it would be OK to leave Tamsin in the car by the school gates whilst I ran to get Sasha. Left the car locked with her in it, as she was worried a stranger may try and get in, and so I warned her the alarm may go off if she moved around, but not to be frightened by it. Well my trip to get Sasha took a little longer than expected due to situation described above, so I was back at the car in about 15 minutes. I found it with the hazards flashing, so obviously the alarm had gone off although from where I was I couldn't hear it. No problem really, apart from the fact Tamsin looked a little scared... she said some lady (who she didn't recognise and couldn't see nay children with) had tried to get in the car when the alarm was going off, presumably to try and help Tamsin (although she was fine). So I quickly sped off, worried that whoever it was had gone to call the police, or social services.... last thing I need is to be branded an irresponsible mum!

Still no news from either the Statement people or the NHS SALT service. Feels like we're stuck in limbo land as time ticks on. So normal life has to carry on - off to do the food shop now. Must.Not.Buy.HotXBuns.
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Friday, 11 March 2011

Flashback Friday... cringe! I'm feeling brave.... or crazy...

OK, so thanks to Southsea Mum and in an effort to make myself (and everyone else) laugh, here's my Flashback Friday pic...

I'm posting this to prove I was once slim, albeit in a very out-of-proportion long legs short top huge hips kind of way. I also had no fashion sense (although this was the 80s) and a very bad hairdresser.

I'm really not sure I should be posting this.... but I've done it on Facebook once already so go on, it'll prove again how crazy I am :)

Now if you can read on through your tears of laughter, here's another one I wanted to post, just for me really:

Following on from my mum and me theme last week, this is my nana (mum's mum) and me. I still miss her. Lots. But love remembering the happy times :)

If you want to join in Flashback Friday, go here to cafe bebe
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Wednesday, 9 March 2011

Ah, the return of the meltdown..... Statement, anyone?

So. Today was not exactly a good day. Things have been ticking along quite well for Sasha though so I guess I should have realised we were about to go off the end of the rollercoaster ride again (I think I did anticipate this, subconsciously... but that doesn't mean I made it happen!!).

Nothing too unusual about this morning - she didn't want to get dressed in her uniform again, and so on to the usual game playing to try and persuade her to get dressed and leave the house. However she was slightly more adamant this morning, and although I managed to sneak her tracksuit bottoms on (no mean feat, believe me), she would not let me remove her nightie (actually an old summer dress, her favourite bedtime attire at the mo). We had this type of issue a couple of weeks back, and I did end up taking her to school in just her polo shirt and nappy, which Tamsin thought was hysterically funny. Fortunately, as Tamsin was laughing so much, that time it did get Sasha out of the mood and she let me put the tracksuit bottoms on in the car when we got to school.

This morning though, Sasha was quite pleased that she'd been able to keep the nightie on, and she skipped into school wearing it. Again with some clever trickery I managed to get her polo shirt on - 'ooh, look over there at that smart, dressed girl', which didn't mean Sasha wanted to be like her, just that she had been distracted for long enough for me to whip the dress off and get the top on. Then it was forgotten as the school door opened and in she went happily.

Or so I thought. After collecting her from nursery they mentioned she'd been a bit off and not wanting to join in with most things all day. She then started to get very upset very quickly, asking to go back in to get her nightie, which she presumably thought I had left on her peg for her. No amount of me explaining that it was now at home (and even more unfortunately, in the wash, though I thought it best not to mention that!) could pacify her and she started to get quite distressed, not sure what she wanted. She wanted to walk home, but didn't want to walk or be carried back to the car. It was almost tempting to leave the car and walk the 30 minutes home, except I knew she would want to be carried after the first 5 minutes, so it was never going to happen. By the time I had got her back to the car she was beside herself, pulling at her trousers - although not wanting me to take them off for her. I would have stripped her in the street completely if it had helped at that point, as she was so distressed, but I just had to kneel on the ground and hold her to try and calm her down. Thankfully all the other mums had left at this point, no-one to see the tears streaming down my cheeks as I tried to make her feel better.... She did calm down a bit, but it soon cranked back up again as I tried to get her into the car. That's difficult when they don't want to, you're really scared you're going to hurt them or that they will hurt themselves as they bang around. Eventually I got her in the seat in the back (usually she loves going in the front, but just would not go in the seat there) and we set off home. She was quiet to start with, largely I think because she realised I was upset (although I may be kidding myself there!), but as we got about half way she started screaming that she wanted to go a 'different' way home. I have started driving home a different route on some days, particularly when requested by Sasha, as I feel it's always good to try and do things differently and not stick to the same old routines all the time in case there's a time when you just can't.

The thing is, when I say screaming, I mean really screaming, to the point of making herself sick - just because she didn't like the way we were going. But it's not in a naughty way, she was seriously upset by it for whatever reason. So I did take a different route within our estate, and that did mollify her slightly. When we got in she just wanted to lie on the sofa and do nothing (not even watch TV!), with me by her side, for a good 20 minutes. Then she requested sandwiches, then more sandwiches (and crisps), and then she started bouncing around again as if nothing had happened. For the next 2 hours, all was fine - until it came to leaving the house again to collecting big sis. Which of course she initially didn't want to do, but then when I told her we no longer needed to as Daddy would be able to collect her, she then did desperately want to leave the house.

I'm not sure what was up today really; she may be coming down with something. To be honest, it's all very tiring. The rollercoaster/unpredictable bit is quite difficult. I'd love to get more involved and stand up and be heard about my views on SEN, experience of Statementing, funding (lack of), SALT (lack of) and the government reviews/green paper on SEN etc, but at times like this I just don't have the energy. So many people see her doing well at the new nursery and think she doesn't need any help. If I could just feel optimistic that Sasha will get the Statement and extra help she will need throughout her school life, I'm sure that would help.
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Tuesday, 8 March 2011

Daylight Robbery!!

£1.10 for 3 jaffa cakes. Just checked online and in well-known supermarket could have got nearly 24 for that (or 12 if they weren't on offer!!). Even more costly when you realise that Sasha only ever wants to bite off the top chocolatey and orange bit. So that meant I had to eat remainder of 3 jaffas minus orange bump - not good for the diet.... Hey ho, that was all part of today's little trip for mummy and Sasha to the 'big' park after school nursery (where there also happens to be a lovely, but pricey cafe. Not that I got to buy anything for myself - I didn't dare ask how much a cuppa would cost!!).

Sasha has been asking to go to that park for a couple of days now, so she did really want to be there, but when I picked her up from nursery she was crying and wouldn't leave the room when her name was called, until she saw me. They had no idea why; said she had been perfectly happy until 5 minutes before. So something was obviously bothering her, and although she enjoyed everything in the park briefly she did get upset when a little boy wouldn't let her play with the steering wheel. His mum came running over, all ready to tell him off for not sharing, but really he hadn't been doing anything wrong (it was 50/50, they were both there at the same time!) and it felt just too difficult to explain to this other mum why Sasha was unusually upset about it. Even if he had shared it would have been too late for Sasha, who was obviously on a downwards spiral. Hence the expensive jaffa cakes; fortunately they seemed to do the trick and 'saved the day' to some extent.

Feeling even more like a useless mum after bedtime tonight (don't we all have days like that?!). With hubby away it was down to me to get them both in bed, and they were both tired so actually it was not all that difficult. I read to Tamsin first as I knew there was a danger of her falling asleep, but left her playing whilst I went to see Sasha off. When I got back to Tamsin she was curled up in bed, almost asleep, and as I gave her a cuddle it did make me a bit sad remembering how I used to spend lots of time with her at bedtime. I know that sounds mad, and how long it took getting her to sleep did drive me mad at the time, but the thing is I rarely get the chance to do that any more and now I miss it! Sasha still insists on me at bedtime if I'm in the house (funny how she can be good for daddy or other family members if I'm not...). You may well think 'well just say no to her/leave her to cry then', but the trouble is that Sasha is so good at staying in her room in the evening after she's let me go, and not coming out of it until we go to get her in the morning, that the prospect of 'upsetting the apple cart' is not one to be relished. Her screams for mummy would no doubt keep Tamsin awake anyhow, so it's easier to stick to the routine and Tamsin gets daddy bedtime generally these days. Can't complain really, I definitely had my fair share! Would just like to share myself around a bit more now too.

My writing is not really flowing tonight; I think waiting for Sasha's statement (or not) to come back from the council is on my mind a lot at the mo. We have been warned that the council seem keener on giving out the 'note in lieu' instead of a statement these days, which means pretty much nothing except more struggling and appeals. Not much I can do in the meantime except sit and wait, so I'm off to read some other blogs tonight!
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