Saturday, 24 December 2011

A Peppa Christmas Eve?

So it's Christmas Eve, and Sasha wakes up, still coughing madly, asking to go to Peppa Pig Land.

Well, I say, of course we can go again one day, but not today.
'But mum, want to go to Peppa Pig Land!'
'It's Christmas Eve today Sasha, we can't go. Another time.'
'But Mum, can we go to Peppa Pig Land?'
'No darling, it's Christmas, it's closed'.
But Mum, can we go Peppa Pig Land?'
'No, it's Christmas, it's closed.'

And so it goes on for another 5 minutes.

Or, 'is it summer yet mum?', 'is it snowing yet mum?', 'it's winter now, isn't it mum?'.....

Now I know people who have been in this house find it funny when Sasha repeats the same thing again and again (indeed Tamsin just came in, read the first part of this and said 'was she really asking that? That is SO funny!'), but I have to tell you it really isn't. It's difficult to explain just how tiring and wearing it is to answer the same question repeatedly, especially when you know that not being able to fulfill the request is likely to lead to a meltdown - and if not a full-on meltdown, then at least a grumpy mood which could last a long time and affect the rest of the day (and that's just me  Smiley ).

Ho ho ho, Merry Christmas. Excuse my lack of festive cheer at the moment, I'm trying to muster it, honestly I am, but it's been a difficult few weeks in the run up to this occasion of the year. ('Mum, it's my birthday after Christmas, isn't it mum?' 'Yes Sasha, but not until June, you remember, in summer...'). Changes in routine at school and lots of practising for the Christmas Nativity show (more on that in another post...) stressed Sasha out towards the end of term and meant that her controlling behaviour stepped up again at home.

Sasha has been quite poorly all week with a very high temperature and bad cough which keeps her awake lots. The situation is made more stressful by the fact she refuses to take any medicine. Actually this week she was so bad she did let me give her a suppository twice (the first medicine she's had for over a year). But although they helped slightly, she hasn't let me repeat that since.... She obviously felt so bad that at one point, when there were beads of sweat on her forehead, she screamed at me for medicine, but as soon as she saw the bottles she screamed it was disgusting and for me to take them away again. I was worried as she didn't eat anything for over 24 hours - not even chocolate, and that's very unlike her.

I took her to the doctor, who examined her and said her temperature wasn't overly high (typically it had dropped by the time of the appointment 4 hours after I called) but she had a red throat and was probably 'brewing' something. At which point Sasha piped up 'can we go to the chip shop now mum?'!!! Funny how kids show you up.... however after leaving the doctors and getting into the car she promptly threw up - now why couldn't she have done that in front of the doctor??! She still then wanted to go and get the first food she'd had in a while - McDonalds chips. I was happy to give her anything!

We have tried everything - syringe, spoon, shot glass, fingers etc - but it is now impossible to get anywhere near her when she's poorly. She doesn't respond to bribery, so offers of chocolate are pointless. She only ever drinks water, so can tell instantly if anything has been added to it and won't drink any more. She doesn't eat sweets (someone once suggesting injecting medicine into a marshmallow, which I thought was a great idea and am holding in reserve if ever needed for Tamsin...!). I've tried homeopathic 'sweeties/drops' but they don't work for the same reason. I'm hoping if it was a matter of life or death we could get something into her, but I'm not convinced - anything you put in her mouth she can of course spit back up or gag on. So all in all, it's a stressful time when her temperature is so high. Fortunately she seems to be on the mend now and I'm glad to have back my laughing, happy Sasha. I just hope the happiness laughs for the big day tomorrow and that she isn't too overwhelmed by the mountain of presents..... yes I'll admit it, I've gone overboard again, sorry. But I LOVE Christmas really!

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Sunday, 27 November 2011

Great Gizmos Great Pretenders Butterfly Dress Review

Recently we were lucky enough to be chosen to review the Butterfly dress from Great Gizmo's Great Pretenders range of costumes. When it arrived, I unpacked it and hung it by the door. The beam on our little girl's face when she saw it was HUGE! 

The Butterfly dress is a lovely mixture of aqua, lime, and lilac fabrics - an elasticated chest area for easy on and off, and a net skirt which looks like petals. It has satin covered elasticated shoulder straps, with matching net petals on.

The set includes the most gorgeous pair of wings I have ever seen, a really decent size, in matching colours and with a flower style centre piece. The elasticated straps to hold the wings on are just right - not too large or small, so they do stay on easily! Also included is a fairy wand -a Perspex stick with matching net decorations and filled with beads to produce a satisfying shaking sound. 

Sasha couldn't wait to put it on and waft around the room, zapping us with spells. Even better, she was lucky enough to have an invite to a fairy tea party today, and despite not being in the mood to go originally, once there she couldn't wait to do a quick change into her whole outfit. Sadly I didn't manage to get a picture of her in it without any other children in, so can't post those I'm afraid. It has most definitely been a huge success though! 

This range of premium dressing up costumes includes everything from super heroes, knights and pirates to princesses, dragons and fairies. They come in sizes small, for age 2-4, medium for 4-6 and large for 6-8. My favourite is probably the cute bumble bee outfit, although all of them look fantastic. The range is available from and I would definitely recommend them as top quality items, sure to last and make any child happy.
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Tuesday, 22 November 2011

Poorly girl. Won't take Medicine!

The first 2 days of this week have gone very slowly indeed. Sasha is off school poorly, at home with me. One minute she is bouncing around manically laughing and the next she is crying and screaming because she is so poorly and I can't make her better. She has a full on heavy cold with blocked AND runny nose, a bad cough, blotchy face and pimply type rash on her body. We are lucky that she is very rarely ill, but that means that she's not used to the feelings at all and so doesn't understand why she feels so rough, poor thing.

She still refuses to take any medicine orally, not even the tiny melt-in-mouth tablets that I requested from a homeopath as a last resource. The paracetamol suppositories are no longer really an option, as she'd definitely have to be in agreement for that - and she definitely isn't! It doesn't matter how many times we explain it would make her feel better, there is no way she will take anything when she's poorly. So I suspected a trip to the doctor's would be useless, but as that was the only thing she would agree to do (but only when she started to feel a bit better anyway), I made the call. Our local surgery is closed on a Tuesday afternoon apparently, and the linked surgery the other side of town was also helpfully closed today for staff training. So what, we're just not supposed to get sick?! Anyhow I got a call back from a doctor on call (ha), who suggested it probably was just a virus. Non-specific, anyone?! 'Just keep trying to get the Calpol into her'. Mmmm. We have. You wanna try?!

Anyhow in a strange way I was quite glad she was poorly today..... her school was closed due to flooding, and they were going to hold the classes for her age group in the church hall. Great fun and excitement for the other children maybe, but a nightmare for Sasha who just wouldn't have understand why they were there and what they were doing. I'm sure the teachers were probably relieved she was off too!!!

Last Friday Chris and I were so proud to watch her stand out at the front of assembly with 4 other children to get her certificate. The school cycles the awarding of these so every child gets one each term (ssshh, don't tell the kids!) and they are usually for fairly minor 'achievements'. Sasha's was for 'working so well on the computer'. I was particularly proud because during all the times I've watched Tamsin up at the front, I've thought that Sasha would never be there - well at least not calmly and quietly! I'm happy to admit I was wrong - Sasha jumped up on cue, stood still in the line and even said 'thank you' (well I always did say she was the politest non-speaker I know!) when the head gave her the certificate. Nothing unusual there, I'm sure most of the other parents thought. But for her that was an achievement in itself, although she's not really aware of that. She's just good at following routine, and having seen the other children do it over previous weeks, she knew what was expected. To not let anything else bother her, like the attention, the noise, the clapping, is an achievement.

This, however, was not her first certificate. The previous Friday I was really upset to find out, when I picked her up from school, that she had received her first certificate that day - when neither I nor Chris could be at the assembly to see her. I know many parents don't get the opportunity at all, so I should be thankful, but I was more upset because I know I've been at every assembly for Tamsin, and I would have liked the opportunity to be there for Sasha too. The standard process is that a child will get a slip in their book bag the day before getting a certificate, to alert the parents to the occasion. Then if parents are not able to be present at assembly that week, but want to be there the following week, the giving of the certificate can be postponed.

However when I read the slip and asked Sasha if she was getting a certificate the next day, she gave me a blank look and didn't register what I was asking at all. I tried again but got nothing, so I assumed she hadn't understood what was going to happen. On the Friday morning when I mentioned again that I wouldn't be there at assembly, she was blank. I asked in school if they had told her, and they said they had, so I did suggest that if she was waiting and ready, expecting to go up for it, they had better give it to her to avoid the confusion and a meltdown, and bless her, she was. So although she didn't understand or engage in my questioning her about it, she did know that it was her turn to stand up with those other children. And we missed it. Smiley

This flagged up to me that although she is doing amazingly well at school, and on the whole they are handling her well, they sadly still don't fully understand her. Whilst I appreciate the school can't check with every parent whether they can be there for assembly each week, I do think they should have thought to mention it to me before Sasha. I never asked for this approach for Tamsin - but that's because other children can have it explained to them why they need to wait a week before getting their certificates (disappointed as they may be, it's not the end of the world to them). Obviously for Sasha that doesn't work. Am now making a mental note to write this to them somehow so it doesn't happen again....

I took Sasha to the birthday party of a girl in her class this weekend. It wasn't a huge party, but the room it was being held in was fairly narrow, and to get to it we had to walk through a very busy cafe in the park. As soon as we entered the cafe, Sasha's hands went to her ears, and she told me it was too loud. I had to physically carry her over the doorway to the party room, as she really didn't want to go in. She was already asking to go home. I sat her on my knee for a few minutes, hoping she would see all her friends having fun and join in, but she really just couldn't take the volume. So we had to leave, and I felt terrible, worried that the host would think we were ungrateful (and/or overreacting) and also anxious that the birthday girl would feel upset that Sasha didn't want to be at her party. Once Sasha wants to leave though, I just resign myself to it, as there is no point in forcing her to stay. Once in a blue moon she can be distracted, but as you know, that's rare! I think the fact that she was obviously coming down with something has made her hearing/sensory issues worse recently. Poor thing, there's no fun in wanting to miss a fun birthday party!! I'm now just going round in circles trying to decide whether to attempt the other 3 parties she currently has invites for - especially seeing as one will have over 50 children at it!!!! Tamsin would most probably have been overwhelmed by that at this age too, but as long as I was there with her she would never have wanted to leave. The sensory issues common with autism are not something to be overlooked, for sure.
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Sunday, 13 November 2011

Back on the Rollercoaster

So. Another couple of weeks of ups and downs have passed. I'll try and summarise briefly, as right now I'm concentrating on my PMA (Positive Mental Attitude!), and really I know no-one enjoys whinging all the time - that's what we keep telling the girls, anyhow Smiley

Half term started really well, with a planned but unusual trip out to a stables where they hold special riding days for children with autism and siblings. I knew Tamsin would enjoy the horse riding, having been whilst we were away on holiday, but I had no idea what Sasha would make of it. When I asked her if she wanted to go, she was fairly non-committal so it could have gone either way. I think I was the most scared when we turned up to find the horses were actually fairly large! There was a little bit of waiting around and we nearly had to leave for home as Sasha was becoming disinterested, but fortunately we got chance to ride just in time and both girls loved it. My main worry was that she was slipping sideways and didn't really have the strength or the sense to shift herself back centrally, but she stayed on. Very short clip below:

The rest of half term was up and down - one day I attempted a trip to the supermarket but we only ended up making it to the local shop, as Sasha decided she wasn't going out. Cue a minor meltdown and me having to bundle her in the car with no shoes on, then carry her round the shop. Having the two girls at home is difficult, as they would both like my full attention on different things and I end up feeling guilty that I'm not balancing that, or giving either of them the real quality time. I had suggested Sasha might go back to her special nursery, Tracks, but she clearly told me that Tracks was for little girls, and she was a big school girl now! So that was nice as it shows she has moved on, but that also sadly takes away the chance I had of spending any 'alone' time with Tamsin.

For the weekend, I had booked us tickets for a family outing to see Disney on Ice at Wembley Arena. I booked them months ago, and was really looking forward to the whole trip out at the end of a quiet-ish week. I knew Tamsin would be thrilled, and Sasha would enjoy the train ride (daddy's daughter Smiley ). Initially I had been concerned that Sasha's attention span wasn't long enough to sit still for something like that, so I was pleased when I managed to get front row seats, as I thought she would then be able to see everything and be amazed. Not quite. She did try and enjoy it, but the extra loud PA system which was booming out the story and the songs non-stop was something I hadn't anticipated. I had taken a gadget along to occupy her if it didn't work out, thankfully, so after 10 minutes I put just the headphones from that on her and they seemed to help for another short while. By the time we got to just the middle of the first half though, she was repeatedly asking to go home and so I had to take her out. We found a nice security man who informed us you can hire ear defenders there, which hadn't occurred to me, so I handed over the deposit hopefully and Sasha was happy to go back in. That lasted until the interval though, where she became fixated on the extortionately priced (don't ask!) twirly whirly light up toys. Tamsin melted my heart when she quickly said she didn't mind if Sasha had a toy and she didn't (not her usual stance, I might add!!) so that put a huge grin back on Sasha's face. But when the second half, and the noise, started up again, it was clear to see it was still too much for Sasha, even with the defenders, and she begged to leave,so I had to take her out once more and sit on a wooden bench in the foyer for the next hour, whilst Tamsin enjoyed the show and Sasha played with her gadget. Ho hum. In some ways her sensory issues are becoming more apparent now and that is something I'll be following up at our paediatrician review next week.

The following weekend also didn't quite go to plan - first a party of two boys from school which Sasha had been invited to. It's always particularly lovely to get invitations (Sasha has another 3 on the fridge!) as a big worry is how Sasha is 'different' and can't relaly make friends easily - she doesn't relaly understand that concept fully. we're really lucky that Sasha is so confident and sociable, as it seems that for now at least, the other children seem to love her and take her under their wings. Long may that last.... Anyhow back to the party, which was sadly not a great one for Sasha - one entertainer lady with a very loud PA, who got all the children to sit on a mat for and hour and a quarter, shouting things out while she did silly jokes and magic. All the children except Sasha that is - we had to go and play outside the front door because it was just too noisy for Sasha and she was asking to go home! I kept hoping it would switch to more standard party games, but sadly they didn't come until after the food. As I was outside looking in, it struck me again how compliant all other children are, sitting still and following instructions for so long. No problem for Tamsin, but big issue for Sasha.

That evening was fireworks night, and we had tickets for a display in the local village. Looking back, I'm not sure why I ever thought that was a good idea, but Sasha seemed keen on the idea, even though it was a late start at 7pm. We left home all wrapped up with no issues, but the second we stepped foot inside the gate and onto the large field holding a fair few people (but not crowded), Sasha wanted to go home. She was scared of the big bonfire when they lit that, and wanted to sit inside right next to the DJ's speakers (loud!) rather than be outside. I tried to hold on until the fireworks started, but she just got more and more upset and so we (Sasha and I, Daddy and Tamsin stayed to enjoy...again...!) left for home. I spent the next day feeling sorry for myself, and bemoaning the fact it's difficult for us to go to nice 'family' events and occasions such as that. Then it occurred to me how lucky we are, and how much more we get to do than lots of people, and how much more difficult our lives could be and hence now the PMA.

That doesn't mean I won't blog about the bad things any more I'm afraid - I've got a good one for next time about how we couldn't see Sasha get her first ever certificate in assembly - but I do want to be thakful for what we have and enjoy life. I'll be back to the random, inane blogging before you know it Smiley.

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Wednesday, 26 October 2011

First huge meltdown at school

You know, I knew I would jinx things by writing about how well they were going... serves me right!

Actually all is not so terrible, but Sasha did have her first huge meltdown at school two days after I last blogged - a big enough meltdown that I had reports back from a few other parents (whose children had told them!) about how upset Sasha had been. The school teacher briefly mentioned there had been an incident and mentioned something about Sasha not saying sorry when I collected her, but I wasn't too concerned at that point as they didn't seem to be themselves. However, when I asked Tamsin if she'd seen Sasha that day, and her response was 'yes, she was doing a mushroom in the dining room and then wouldn't eat her lunch when one of the bossy dinner ladies tried to make her', and I also then heard comments from the other children, I did start to get a bit anxious. Especially seeing as the dining hall, and getting Sasha to eat any hot food, has been one of my biggest concerns since she started.

It's unlike Sasha to lash out at anyone or do anything intentionally naughty to hurt someone, so I did worry about what the 'saying sorry' was for. So I called the teacher the next day to put my mind at rest, which she thankfully did, and I just hope it doesn't get me a black mark in the neurotic parent book.....

It was coincidentally Sasha's first 'full' day at school (i.e. she now stays until 3pm instead of only 130pm). Not that the full day had anything to do with it - the meltdown started in the classroom in the morning. It had been brewing for a few days, ever since they changed her carpet/sitting position in class. She didn't like the change (funny that!) and has been reluctant to sit down and join in ever since. The teacher thought it was because she didn't like the boy she was being asked to sit next to, but surmised it wasn't that, as he wasn't in school the day she finally blew up. However, as her EYAS pointed out, it could also easily have been just because he wasn't there on that day for her to sit next to, that matters came to a head.

Sasha refused to join in at all, and it was the assistant who spent the morning trying to persuade her (with no luck) who the teacher wanted Sasha to apologise to. Sasha was still upset when she went over for lunch and things only got worse - which led to Sasha not eating any lunch at all and being witnessed in full meltdown by all the other children.

They obviously handled it how they thought best in the morning, but I'm not sure it worked..... however in the afternoon they talked it through with Sasha and got her to make a 'sorry' card for the assistant. Now I'm not sure Sasha is really up to the level of understanding what she was doing that for, but certainly by the time I picked her up she seemed fine and not even overly tired with her first full day (although the exhaustion from the meltdown did obviously kick in later!). Most importantly, she seemed happy enough to go back in the next morning. That was the last day before half term though, and an unusual day as the routine was all changed due to an outside teacher being in the classroom, so I'm guessing the carpet issue didn't need to be addressed. So I'm waiting with baited breath to find out how the return to school goes after the holidays... All I know at the moment is that I'm shattered from having two of them at home all day every day to entertain. Even a little supermarket trip can be more than difficult with Sasha.. but more on that another day!
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Tuesday, 18 October 2011

Statement review and school update

Wow. Time is flying by and I've still not managed to get into blogging as regularly as I'd hoped. Starting the manic run up to Christmas now too, so sure there'll not be much time going forward for anything except shopping..... So I promise I'll get better at it in the New Year - same time as I finally get to the gym again....

Anyhow a very quick update for now. Sasha is doing amazingly well at school, which is lovely but also slightly unsettling, bizarrely. I think it's partly that once I find I don't have to worry about one thing, I feel a bit lost without the next issue to concentrate on! This week we had her statement review (every 6 months until the term after her 5th birthday, then just once a year thankfully). I was anxious before the meeting - I remember only too well how everyone told me I'd never get a statement for Sasha, and seeing as she has been getting on so well at school, I thought they (the council) may just take it away again.

It turns out I needn't have worried, as everyone is still in agreement that she still needs the help specified in the statement. Not that there's a lot specified, to be honest, it's not like she has a dedicated assistant or anything! It mostly just suggests tactics for the teacher, like small group work and visual timetables. The key direct help in the statement is speech and therapy, which I had to battle for after feeling let down by that service early on, and so now Sasha will get a visit at least twice a term from a speech therapist (SALT). I'm told this is a very good level of support, although personally I can't help feeling more intense weekly therapy would have been better - but then again I'm no expert!

Although she is doing so well, and I'm generally getting positive feedback, it is of course impossible to forget  how different she is. Whilst she may catch up intellectually with her peers at some point in the future, it's likely that she will always remain behind with the social understanding. She may well get to learn her own 'triggers' for meltdowns and manage her unacceptable behaviour, but that's probably some time off, and even then that may cause extra stress and create more difficulty in her life.

For me the statement was, and still is, a means of making sure that everyone is 'singing from the same hymn sheet' when it comes to Sasha. If we had to move and change schools, it would be the starting point to avoid having to waste time going back to square one. It does mean I get a face-to-face meeting with the teachers and therapists that other parents don't get, but that's not something I ever really wanted. It does make me feel slightly sad every time, knowing that Sasha does need this help. Right now though, thankfully, she's not aware of that, and she's such a happy, confident, contented little girl (when she's in the right mood!!!). She's very sociable, and she is joining in and following instructions most of the time at school, and she is still developing her language and understanding. Tamsin, meanwhile, is also doing amazingly well, and we're very proud of her. So we have a lot to be happy about, and for now I will try and stop worrying about 'what happens next'.

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Tuesday, 27 September 2011

The latest artistic masterpiece......

So. Just a little update to prove it really is never-ending......

This is, luckily, only pencil. On our side table in the lounge.

Earlier on today, after school, I got the paints out as both girls enjoy that so much. After a while (and my boat on sea masterpiece) I went off to do some other cleaning/tidying (see, told you, I never stop...!). I foolishly forgot however, that I had left the box containing the paint bottles in the same room as Sasha. I came back just in time to catch her squeezing out a huge volume of paint - so all mixed up but fortunately into the paint pots and not on the carpet (which was just inches away at the edge of the mat).

So next, time for a play outside whilst I got tea ready. Within a minute, Sasha had dug up a substantial amount of mud, wiped it on the table and brushed it flat. All over. Her hands were black all over - I guess I should be grateful it wasn't up to the elbow, right?! Had to quickly interrupt tea making to rush outside with soapy water and towel, to make sure it didn't come inside, along with any muddy feet.

Just a couple more examples..... Her signature theme tune is, I've just decided, It Only Takes A Minute.
Ho hum. Gotta love her.
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Monday, 26 September 2011

Clean clothes on the floor... would you wash again?!

Here's two pictures from a couple of months ago which I've just come across again. They made me laugh.... though not so much at the time...

It just shows what damage Sasha can do in literally minutes if I'm not watching her like a hawk. Good old tug on the clean clothes hanging on the washing line? Oh what fun. Drag it around the grass a bit? Yes please. Drop my half finished ice lolly in a hard-to-see corner of the sofa when I'm done? Oh why not. Bit of artistic colouring on the carpet? What a good idea!

And the list goes on. It's laugh a minute round here, doncha know ;)

One of the mums from school was a bit shocked today when her child called out 'bye, Sasha Basha', but it made me giggle. Sasha really likes to rhyme other people's names all the time (lucky me, I'm Mummy Bummy). To be fair, we probably started it by calling her Sasha Basha when she was much younger - when we started to realise that she left a fair amount of mess behind wherever she went. Sasha Trasha could have been another one.... 
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Friday, 23 September 2011

New school life in reception - good or bad?

I really don't want to sound too smug about this, but Sasha has had an amazing start to her school life. Two and a bit weeks have passed, and I can tell she is still enjoying it and wants to go in everyday. She is happy and confident, and loving the routine. For me, it's so amazing and almost makes me want to cry with relief!

We had a major wobble on the third day in, after the weekend, when I had to leave her screaming in the classroom in the morning when she didn't want me to leave. It was full on screaming, not just a little whimper, and it took everything I had to extract myself and leave as quickly as possible. I spent the morning wondering how it was going, and expecting a phone call, but thankfully heard nothing. I got no direct feedback at the end of the day (well 130pm, short days for the first half term, that's a whole other post), so I assumed it was no real problem. In her communication book it did say she joined the group again fairly quickly - I'm grateful that her curiosity gets the better of her and can calm her down!

On the Friday of the first week we did hit a stumbling block with assembly. All parents are invited every week (though fortunately not expected!), and children are often presented with certificates after talks on a theme. For the first assembly, I really wasn't sure how Sasha would cope with having to sit quietly and listen for an extended period, so I was nervous myself before going in. I thought it would be best if I sat at the back so she couldn't get to me easily, but somewhere that she could see me as she came in so she wasn't worried about me not being there. My plan backfired slightly however, as the second she saw me on her way in, she stopped dead where she was and refused to walk any further. She then spent the assembly lying on the floor by the wall near to where I was sitting (i.e. not sitting at the front with her classmates). She moaned and whimpered, but fortunately didn't create a big fuss, and the teachers were very good at just sitting with her and letting her 'be'. Of course, what she really wanted to do was come and sit on my knee, so I had to spend the rest of the assembly looking the other way and not making any eye contact, so as to not give her the opportunity. That was difficult when she was only inches away!!! Toward the end she did 'up' the crying, and started trying to shuffle towards me, so she was then led back to her classroom slightly earlier than her classmates. A couple of new mums sitting by me were sympathetic, and that did bring tears to my eyes! I wasn't upset because she wouldn't join in, and am in no way worried about what other people think, but it did just highlight again how different she is from all the other 'conforming' children, and how difficult her life may be.

So this morning was the second main assembly (they do them on Mondays also, but without any parents present) and this time I had decided it would be better for Sasha (and me, if I'm being honest!) if I wasn't there. It was planned as a welcome assembly for all reception children though, so it seemed a shame not to be there. The main sticking point was that it was to be a mass as well, which meant an even longer time for Sasha to sit down (and try to listen to a priest who even the adults find it difficult to understand!!!). At the last minute I was persuaded to stay, but in hiding at the back of the room, and I'm so glad I did. Sasha came in with her classmates with no problems, and sat right at the front where she could see the action - great intuitive thinking from her teachers. There was a lot of words, and a lot of standing up then sitting down again, and even queuing to go up to the priest at the front, but also a lot of singing and interaction from the older children in the school (Tamsin helped give out welcome stickers to all the new starters!). I made sure she couldn't see me, so from where I was, I could only see the back of Sasha's head if I half stood up. I did that a few times to see her just watching everything intently. I had to leave before the assembly finished (it had been going over an hour at that point!!), and as I snuck out, my greatest fear was realising I hadn't seen Sasha go to the toilet that morning, and that she may well have an 'accident' as she wouldn't know to ask for the toilet in such a strange environment! However I also knew that there would be other mums of 'normal' children fretting about that, nothing unusual there. Several other parents commented later in the day at how well behaved Sasha had been, and it really was a huge relief to me. Maybe after a few weeks I'll even be able to work back up to sitting in the front row again!

My major worry now is that everyone thinks Sasha is doing so well and that they assume I'm making up the difficult times! I can live with that though... 

I know other friends and bloggers who are not finding life so good at the moment, and struggling to get their children to attend school, or having difficult meltdowns post school. I'm keeping my fingers tightly crossed for them that things improve and they start to go back up the roller coaster.
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Sunday, 18 September 2011

#Healthworkers - more needed! Please read and sign the petition.. takes seconds...

OK, OK, I know that actually I really need to get on and update my own blog with news of how school is going, but tonight I saw a Tweet (ooh, get me, all technological n stuff) which has prompted me to quickly write this.

Mummy From The Heart has written a brilliant post to create support for the #Healthworkers campaign.

In short, there is a severe drought in East Africa and not enough health workers. More signatures are needed on a petition to persuade David Cameron to do more about this. I'm not political myself, but I do believe that creating awareness is the first step to achieving anything, so I'd like to help spread the word and have added my own signature.

I'm going to also ask the following bloggers to join in, although I know they are all very busy ladies....
The A-Word
Looking For Blue Sky
Little Fella and Us
Aspie In The Family

But even if you are not named, please do click through the links and do what you can to help. It will mean  lot to so many.
read more "#Healthworkers - more needed! Please read and sign the petition.. takes seconds..."

Wednesday, 7 September 2011

The eve before school start...... boys v girls

I'm afraid to say I shouted at some small children today. Probably scared them half to death. Boys though, horrible little things Smiley (I have two brothers, I can say that....)

Only kidding (about the boys, not the shouting). This afternoon was going so well though - Sasha's last day at home before she starts school tomorrow. She had been really happy running about in the park with her snake (no, not a real one, silly, just a long fluffy thing on a stick that wiggles....), and then we had to go to school to collect big sister. Whilst waiting outside the main entrance, Sasha continued to play really nicely with one of the girls her age that she knows, and another younger sibling (also a girl, do you see where I'm going with this?!). The three of them were laughing and giggling happily together, running about with the 'snake'. Then some boys turned up, and within seconds the snake was broken. Fortunately this didn't cause a meltdown, as I retrieved the two pieces quite quickly and promised they would be fixed at home.

At this point then Sasha ran off down the ramp the other way, and was followed by the boys. A couple more minutes of playing followed, and then I suddenly noticed one of the boys give Sasha a little shove in the back. As I started to walk towards them, the other four boys all crowded round Sasha, and the biggest boy (from the year above) grabbed hold of her in a bear hug/wrestling type of way and then toppled her to the ground, so she fell and grazed her knees. I was running towards them at this point (they weren't even very far away!) and I shouted at the boys to stop, then asked them angrily if they thought that had been a nice thing to do, and if they would have liked it to happen to them. At this point Sasha was screaming and crying her eyes out, so I sat down with her for a big cuddle, and I'm sure all the other mums just thought she had fallen over.

It was a gut reaction from me, and not necessarily the right one, as I'm sure the boys weren't being naughty or evil, they were just indulging in a bit of chase and catch the girl. My worries for Sasha are much stronger though, as it brought home just how vulnerable she is, and how she wouldn't understand a potentially dangerous situation. In reality this kind of behaviour is worrying for all mums, particularly of girls or smaller/quieter boys I imagine, when the children are still so young and they just seem more fragile. To me though it opened up lots of thoughts of how things might become that much more difficult in the future for Sasha, when the children do start to mature and notice the obvious differences more. Probably her relationships with girls will end up being the ones we worry most about, as we won't be able to force friendships, and I think we all know that girls are a lot more complicated in their thinking!

Oh well, roll on first day of school tomorrow. Fingers tightly crossed that she will still actually want to go in the morning, and hasn't changed her mind. I wonder if she'll want to wear uniform or not?! I'm hoping to try and speak to the Cook in the morning, and pre-choose her school dinner, as that is actually the biggest worry of the day for me. At home her hot food is pretty much limited to chips and pasta shapes, with the odd pea thrown in! I should actually be preparing some info now about Sasha for the teacher and assistants, but just can't seem to settle down and do it. It's a shame I have to do it at all. In a way, they'll need to find out about Sasha and understand her for themselves, so I just hope they can find the time for that. I can tell them now, it won't be easy Smiley
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Tuesday, 6 September 2011

Autism support: thanks to TRACKS and EYAS!

Following Sasha's diagnosis of autism, I've been through many roller coaster thoughts on what we should be doing to help her. We've tried private speech therapy, and used all the advice and help we could get from the NHS, but stopped short of going in search of 'holistic' or 'alternative' therapies. I honestly don't think she would be any different now regardless of what we tried - she is who she is, and fortunately we're very lucky with that Smiley

There have been two major providers of support for us over the last year or so - and I mean for me as well as for Sasha. Our EYAS (Early Years Autism Specialist) has been absolutely wonderful and I really don't know what we'd have done without her. Apart from giving me a break, and helping me to often change how I handled Sasha for the better, she taught Sasha how to share, follow instructions and be patient - although Sasha will only do this when she wants to of course Smiley

The second major help has been TRACKS. Please click on their name to see the website. This is a specialist pre-school nursery which has been set up to specifically help children with autism. They rely on charitable donations and would appreciate any donations to help keep up their good work. We were lucky to get a place for Sasha there, and I took her once a week after school nursery, even though it was a 40 mile round trip twice a day for me. It was a real shame there wasn't any similar provision closer to home, as I would have hoped Sasha could attend more often. The staff there all have a huge experience and understanding of autism, and in fact the staff-child ratio was almost 1-1. It is a sad fact, but without 1-1 support at school it is unlikely Sasha will really discover her full potential. She needs to be understood, and that is what they excelled at. I'm so sorry Sasha won't be attending any more now she's about to begin full time mainstream school. Both Sasha and I will really miss that environment - she loved it there, and we know she was loved and was helped to develop greatly.
read more "Autism support: thanks to TRACKS and EYAS!"

HABA toys - top quality!

Some time ago, I was delighted to be asked to become an Ambassador for the Haba Mums Club.

I was sent some lovely toys for the girls to play with, in return for our honest views on what we thought of them. The Mums Club has a great website set up, where you can hear real mums talking about the toys. 

Here's a couple of pics of the first ones we had:

We were then sent another couple of toys, but what with all the end of term birthdays and summer holidays, I've been a bit rubbish and not managed to find the time to get back to them with our review of those. It's the next thing I'll do... honest. In the meantime I just wanted to quickly say that HABA toys are gorgeous - little on the pricey side, but fab quality and so well thought out. I'd definitely recommend them!

You can view their website by clicking here.
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Saturday, 3 September 2011

The evil that is moon sand.........

OK, here's a top tip for any of my friends with autistic children:

DO NOT buy any Moon Sand/Moon Dough.

If someone buys your child some as a present, take it back. Do NOT open it.

It really doesn't matter how many times you tell them to KEEP IT ON THE MAT, they are incapable of doing this.

I know, I know, why not just throw it away and not let them play with it? Tempting, it really is, but that's where the autism comes in. It wouldn't be forgotten; in fact it would be requested frequently, and then cause anything from a minor to major meltdown when you aren't able to produce it. So keep it or throw it, either way it's a PITB. Plus, it is actually one of the toys that gives Sasha the most pleasure - must be the texture I imagine.

Anyhow, that's my top tip for today. Now, does anyone know how to get a 6 year old to stay in bed until at least 7 in the mornings??! Yawn......

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Sunday, 21 August 2011

Holidays... Relaxing or not?!

Can't believe I haven't blogged for so long, but school holidays are not the most relaxing time, I've noticed. Part of me is longing to get back to the daily grind/routine.... the autistic part maybe?!

Anyhow life is good, rumbling on as usual, albeit in the very hot climes of southern Spain for just now. 2 little girls enjoying an afternoon siesta as I after a minor meltdown at lunchtime... Where we are staying there is a restaurant on site, and we tootled up to have lunch today. Sasha decided she couldn't walk the 2 minutes it would take, and in the hope of a quiet lunch I agreed to carry her again. Despite the promise of chips she couldn't be placated once there though, and she walked herself back to our little casa a couple of times. When the chips turned up she returned and there was a glimmer of happiness as she tucked in, but she wouldn't leave my knee so it meant me trying to eat my delicious meal around her! Tiredness was probably the cause this time, but it does stand out how other children can be more easily placated or 'dealt with'.

We are holidaying with others with children, and although Sasha's behaviour isn't bad, she won't exactly fit in. We are staying half way up a mountain, and both girls are getting very travel sick going up and down the windy road in the car. I now have to travel in the back between them on Sasha's demand - doesn't exactly help with my travel sickness! Sasha's lack of flexibility or ability to enjoy being spontaneous makes it very hard to make any plans to do anything or go anywhere, which in some ways is a blessing as we do next to nothing - so it really is a chill out time. But on the other hand there is so much around this region that we would love to explore and do, but just can't. I find myself hoping that the others don't think we're boring... but then have to remind myself it doesn't really matter what others think.

We talked briefly at lunch about where we would go and what we would do if things were different, but the reality is that our holidays will mostly be like this, as if we went without the girls we'd just feel guilty about leaving them behind (assuming we did have babysitters!!).

On an earlier trip to the beach I remember seeing an older couple with a young adult, presumably their son, who had some sort of disability which meant he needed to be supported to walk along the sand. Whilst it was obviously an enjoyable experience for him, I couldn't help but think of the poor couple who had probably not expected their life and their elderly years to be consumed by still looking after someone else - no retirement in effect. I also saw a dad on crutches, with one leg amputated, who enjoyed taking his young girl for a splash in the sea and was presumably trying to enjoy life to the full and not regret a single moment. I think although it may not always be easy to do, it's definitely the best attitude to try and maintain. I'm trying!
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Wednesday, 27 July 2011

Frock It... but beware of the comment link is all I'm saying...

OK, so just because I've been asked very nicely, here is my entry for this week's Frock It, a lovely linky run by a lovely lady who writes the lovely blog This Mid 30s Life.

The idea is to find a really good or really bad outfit from the week, celebrity or not. The wedding dresses this week were simply amazing! My choice may actually have been from longer ago than that, but I'm hoping I don't get linky barred....
Emma Watson is, in my opinion, so stylish, and ultra feminine even with her short hair. I loved this frock mostly because it's the sort of thing my husband would hate - not that there's any danger of me wearing something like this (with my legs? and bingo wings? and and and...!!). To me it looks stunning - but she could probably wear a bin liner and look good, to be fair.

So that's my entry in the linky - feel free to sniff out your own favourite frock pic and join in!!
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Tuesday, 26 July 2011

'Holidays' Day 2..... definitely improved from day 1, but then that wasn't difficult ;)

So Day 2 of the holidays has passed relatively smoothly, which is just as well as I seem to have caught the traditional summer cold from my girls. Looking after 2 children full time with a thick head is never much fun and I can't wait to go to bed early myself tonight!

Day 1 was... interesting. I had signed both my girls up for a drama course, 2 and a half hours every morning for this first week of holidays. I did this after a great deal of thought - Tamsin attended the summer drama course last year and loved it, so there was no question about her going back, but I was unsure if Sasha would take part. However I did my homework; spoke to the drama course owner about Sasha and took Sasha along to a trial session during the term so she could meet the people. She did amazingly join in a little bit in that session. I also knew that a girl from Sasha's nursery would also be attending the summer course and I hoped that would help Sasha get involved. So I threw caution to the wind and put her name down, feeling grateful that the drama company were actually going to attempt being 'inclusive'!

For some reason I turned up very optimistically on the first morning, thinking I would be able to stay and settle her for just 10 minutes then leave. Well not quite. Sasha was very overwhelmed by the 'newness' of it all - huge secondary school hall to run around, along with a small inflatable castle (i.e. for decoration, not use, although that didn't stop Sasha from trying...), and around 30 children and new faces for teachers. She went into hyperdrive and just ran; it took a while for me to persuade her to sit on my knee, long after all the other children had sat down in a big circle and were introducing themselves. Things didn't improve much as there was a lot of 'circle' time - i.e. sitting listening to others and learning words and actions for a song. Never going to be a winner for Sasha. However I had discovered there was going to be a craft session, and as Sasha loves a bit of 'cutting and sticking', I used that as the carrot for staying and resisted the temptation to take her home every time she requested it. We went outside for her to explore, and then we sat (well, with a bit more running) together at the back of the room just watching all the other children be very compliant.

That probably amazes me the most these days; that other young children really are so compliant! Of course you get the chatty ones, and the cheeky ones, and the daydreamers, but they do all generally sit and follow instructions. Not Sasha. Her non-compliance is really driven by a lack of understanding and awareness - she just doesn't 'get' the fact that if all the other children are sitting down being quiet, she should too. Why should she? A very good question really.

So the craft session started late (typical, when you're desperately waiting for something...) but very quickly Sasha felt at home, despite having been led with the others to another room to do this. She specifically asked me to leave at this point, and my heart leapt, tinged with a little bit of fear... what would happen if she refused to come back to the big room with them and had a huge meltdown; how would they handle it?! There was only 20 minutes left of the session at this point anyway, so I hung around out of sight, and she came back with the others, looking for me as she did. They then played some musical statue type games. Now, whilst she is of course no good being a statue, she did want to join in and have fun, which was lovely to see.

In the afternoon I had to take Sasha for her hearing test, and I actually had tears in my eyes as Sasha sat obediently and listened for the sounds, popping a block in the box when she heard them. So different from our first experience there, where she refused to do anything at all. It showed that she is improving, and understanding is half the battle for her. Then I took both girls for feet measuring in the shoe shop (another sensory nightmare), and again, whilst there was a bit of the usual running up and down, taking shoes off shelves and even throwing the price markers on the floor (!), generally the behaviour was manageable. After that we went to the library for Tamsin to get some books out, and there was a lot more running up and down, and even some wrapping herself in a rug on the floor, but she stayed in relatively good humour and so it was much easier to deal with. Day 1 definitely improved as it went along! Until I got home and realised that the DVD I had rented for Sasha needed to be unlocked back at the library... grrrrr.

Anyhow, Day 2 was much more successful. I'm pleased as it appears my persistence paid off. Staying for the whole session was incredibly boring (and also slightly upsetting, watching all the other 'normal' children not having any problems), but although it seemed Sasha wasn't really interested, I think she was actually taking it all in. When we arrived this morning, she went happily over to the large circle, sat down with Tamsin and then told me to 'go away mummy'! So I hid in the kitchen, chatting to the owner for an hour, just to make sure her enthusiasm didn't wane. Although she wasn't exactly participating fully, and there was a fair bit of wandering round the outskirts, she joined in enough to make it fun for her. I left and had a much needed hour at home to get the washing on and tidy the usual rubbish away, and on my return I was told she'd had a tantrum about not having a Tshirt on. They dealt with it though, and she had joined in again, so fingers crossed for another good day tomorrow! Am not holding my breath for her to actually star in the show they put on at the end of the week, but you never know, she may well surprise me!

Meanwhile Tamsin has been enjoying it immensely and I was very proud of her volunteering as the first to do 'show and tell', in a big loud voice, something that doesn't come naturally to her. I was slightly amused today when she told me that she had turned down the part of Belle because she didn't want to be the one to go into the castle (??!!!) so instead she is playing 'Bimbette number 2'. I refrained from laughing, and I'm sure she'll say her 2 words with much energy.   Smiley Roll on Friday!
read more "'Holidays' Day 2..... definitely improved from day 1, but then that wasn't difficult ;)"

Sunday, 10 July 2011

Supermarket sweep.... well OK, meltdown actually...

Yesterday I read 2 posts from other mums which were so brilliantly written I would like to share them.

First, Scottish Mum talks about what it is like to suffer the 'fall-out' from her ASD child please read her post by clicking here
Second, Apples and Autobots talks about a supermarket trip with her ASD child please read here

These were both very moving for me to read, largely because they hit home. Those with ASD children will just 'get' it; I hope those without (with 'NT'/neurotypical children) will take the time to read as they explain so very well what the difference is between being naughty and having an ASD related meltdown.

My husband took our 2 girls out to McDonald's as a treat yesterday afternoon, and then popped into the supermarket with them to pick up just 7 or 8 items we needed. Our supermarket is one of the largest ones this chain has in our country - great for choice, but not great when all you need is a quick shop. Anyhow things started going downhill with Sasha very quickly. She wanted to run off up and down the aisles, or play with the trolley, or in the trolley, and it was becoming quite difficult for Chris to shop and keep her under control. As he made his way towards the checkouts, she started asking to go home and then became very particular about which checkout she wanted to go to - one which wasn't open (i.e. had no checkout assistant).

Chris did his best to manage this and try to keep her calm whilst scanning and paying for the shopping at another checkout, but it soon got to the point where Sasha was in full meltdown mode, and in his words 'everyone in the shop was quiet and staring'. not a lot of help was offered, but then to be fair, there's not much anyone can do in this situation, except maybe help pack the bags to be able to get out of there quicker! Certainly no point trying to talk to or hold Sasha - a stranger doing that would just make her worse.

A supermarket is a terrible nightmare for any child with sensory issues. Lots of people talking, walking in different directions, kids shouting and crying and running, neon lights buzzing, strong smells from fish and cheese counters etc etc. Chris is brave; I can't remember the last time I took Sasha with me to do a food shop. She doesn't need that kind of overload on the senses, and I don't need the added stress of not knowing if I'll make it to the checkout!!

My eldest daughter, Tamsin, witnessed her younger sister's meltdown yesterday, and was very patient and well behaved for Daddy despite having been hysterical about something silly herself only moments before; it's amazing how sobering a meltdown can be. As I thanked her at bedtime for being good, she commented to me that she wished she had what Sasha has, as it means Sasha can have fun doing the things she wants to. Whilst we have tried to explain in not too much detail to her how Sasha is (we say autism means Sasha was born with a brain which is different, which can't understand and learn everything that Tamsin's does), obviously this is a very difficult issue for her to understand. It brought a tear to my eye as I tried to gently explain to Tamsin that I really didn't think she would actually like to have what Sasha's got. The impact of ASD on Sasha's life to come is going to be huge, and I can only hope that Tamsin grows up to be one of the understanding ones. It would be nice if she can help her sister in some way, but at the same time I hope she lives her own life to the full.
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Friday, 1 July 2011

Peppa Pig World - Top Marks, oink oink!

Last weekend we were lucky to have the Friday off school (repayment for Royal Wedding Day, complicated...!) and so I had decided it would be a great day to visit Peppa Pig World. June = good weather (ever hopeful) and school day = less crowds, so I thought we should grab the opportunity.

Peppa Pig World is a new part of Paultons Park, a small theme park down near Southampton. see details here. It is beautifully designed and very well thought out, with 7 Peppa themed rides, plus an outdoor splash area, indoor soft play and outdoor playground.

We had shown both girls the web page, so they both knew where we were going and were excited. The trip started off well, with both happily watching DVDs in the back of the car. An hour into the hour and a half journey though, it began to go wrong. Sasha played with the little ash tray in the arm of the back door and then became very frustrated when she couldn't get it to close again. Cue near hysterics because neither Chris nor I could reach it, and Sasha screaming that she wanted to go home. We ended up having to pull off the motorway and find somewhere to stop to calm her down. (Parents, take note, this is the main reason for us not making the 4-5 hour journey home very often, it's really not because we don't like you ;) ). The only way we could persuade her to carry on with the journey was to move Tamsin into the front seat, and for me to sit in the back right next to Sasha, holding her hand tightly. Not the most comfortable trip! She had recovered slightly by the time we arrived thankfully, and in we went. Car park was packed (so much for school days being quiet!) but there was hardly any queue for entering, and that was perfect for us.

We found our way quickly to Peppa Land, along with most of the other park visitors. We let the day run mostly to Sasha's agenda, to avoid upsets. Thankfully Tamsin was having so much fun I don't think she really noticed that - and if she did she was very good about it! The niggles crept back in as the day went on and Sasha became more tired, and these culminated in a huge meltdown by the SkySwinger ride. This is a ride where you sit as if on a swing, and you are then spun round high up in the air. Both girls have been on and loved similar versions previously, but none quite as high or fast as this! For that reason there was an age and height limit, and children at the smaller end had to sit in a special joined double seat next to the adult. Well, this was something Sasha had not seen before, and as we walked towards the ride she expected to be able to sit in her own seat, just like Tamsin. When I tried explaining she would have to sit next to me, all hell broke loose and she simply wouldn't, as she obviously didn't understand why that was necessary. This meant I had to remove her from the ride and pass her kicking and screaming to Chris (who can't stomach 'twirly' rides!!), whilst running back to secure Tamsin in her seat and get on myself. At the very last minute Sasha realised the ride would start without her and so she sobbed that she did want to sit in the seat next to mummy after all (not in so many words!), so I ran back to grab her and sit her on. Of course once on and up, she loved it, and we then repeated the ride several times! After effect; one shaky and stressed mummy but happy girls as usual!

I was then very glad we had booked an overnight hotel through Paultons Park breaks - that meant we got 2 days in the park for the price of one. We had originally intended to spend our second day at the beach, but the weather was overcast, and as the girls had had so much fun we thought we may as well make the most of it! A lot of thought has gone into the planning of the new Peppa Pig World - there were plenty of separate things to climb on/up/under/over in the playground, and the huge indoors area with softplay, which means all children don't have to take turns for very long... plus Peppa's house to visit, and the school rooms; photo opportunities not to be missed!

Our day(s) there were made so much more enjoyable by the Queue Assist Scheme which Paultons Park runs. This is similar to some run by other major parks/attractions, and it means that those registered disabled, or who have social interaction problems or limited understanding, can go to the exit gate of each ride and be admitted in order to not have to wait in a queue. It can only be used once for each ride, which I think is a fair way of doing it. We did feel bad and awkward when using this though, as it meant that other families who had already queued for some time had to wait just that bit longer as we jumped into the next carriage available. So we 'queue-jumped' with slightly heavy hearts and heads down, not looking anyone in the eye, and wished people could understand. As Sasha's disability is hidden, and she acts most of the time like a perfectly able little girl, I'm sure some were 'miffed' to put it politely. For those reading who don't have Special Needs children, all I can say is that I would gladly swap Sasha's disability and have her be 'normal' and therefore be able to make her understand how to wait in a queue.....

Next stressful trip to plan enjoyable day out is Legoland... watch this space!
read more "Peppa Pig World - Top Marks, oink oink!"

Wednesday, 22 June 2011

Mixed feelings

Bit of a weird day today. Sasha had an 'introductory' type day along with her peers at school to prepare her for Reception start in September. So we found out for the first time who her classmates will be as she progresses through school. It's a 2 form entry school (i.e. 2 classes of 30 children per each year group), so the 30 morning nursery children already at the school were split up and mixed with the 30 afternoon nursery children, and some children new to the school will join each class.

Thankfully two of the girls she mentions most now are going to be in her class, but I'm disappointed that some of the other children she loves are not going to be with her. Familiarity helps to settle Sasha, as it does for lots of children this age obviously. It's just that routine is generally a key feature of autism, so the whole environment and teacher change at the same time will be more than enough for Sasha to deal with. I guess I'm just apprehensive. I'm a bit sad for me too as some of the mums I have enjoyed chatting with, who I know have lovely children, will now be waiting outside a different classroom and so I'll not be chatting as regularly with them. How selfish! Part of the sadness though is because I know their children would have been lovely to and with Sasha - but then I realise I have to stay open minded. I'm sure the new classmates will be equally lovely :)

Also, I'm not sure how the school does the mixing up, but it never fails to amuse the parents that they put children with the same name in the same class, when they could have been put in separate ones to avoid the Jane A and Jane B (example only!) scenario.

I'm very pleased with the teacher Sasha will have, as I've heard good things about her and I believe she is very experienced. Knowledge and understanding is half the battle with autism! I half wish I could line all the teachers at the school up and talk to them about Sasha though - first point on the list would be 'try not to shout at or say 'no' to her directly'!

Sasha skipped into the new classroom quite happily, and got on with playing alongside her peers, so it was a good day for her, although all a little confusing. I am still eternally grateful (in a strange way) to the old nursery for really forcing us to send Sasha to this school's nursery, which hadn't been our plan at all. Now she has been well prepared and the change is not such a big shock for her. We are extremely lucky also that Sasha has such an independent streak in her, so on good days she doesn't cling and likes to get on by herself. I think part of the difficulty we face is that most of the other mums would probably have thought that there is nothing wrong with Sasha if she can do that; surely she doesn't need special treatment? Well first thing to mention is she doesn't really get special treatment other than (hopefully) people explaining things slowly and clearly, directly to her, sometimes using pictures. The trouble with school is really the aftermath - she is extra tired tonight (as I'm sure they all are, with the excitement). In the morning she won't really understand now why she can't go back to that new classroom - if it's her new class, why not stay in it? Of course we try explaining, but the time concept is still a difficult one for her, and doing unusual things/not following patterns is also strange.

Every day since her birthday she has asked for more presents - but not in a greedy child sort of way (she wouldn't mind at all what was in them!), just in a 'I like presents very much' kind of way! Sweet, but very repetitive. She also asks to visit various places at inappropriate times - like her grandparents a 4 hour drive away (which she's mentioned at least 6 days in a run), the local farm at tea time, or the 'chip shop' (dreaded M) on the way home from school. She gets upset when we say no as she doesn't understand why not - again difficult to explain the difference, but it's not in a spoilt child kind of way. Along the lines of the pen on carpet type of experiences (see here), she does naughty things, but not to be naughty. It's more that she's just inquisitive, exploring, or hasn't realised what shouldn't be done in the first place. See I had told her to only draw on paper, but I never did say Sasha you mustn't draw on the carpet...! What other children can deduce naturally just doesn't come to Sasha... sigh. But she is a bundle of laughs and we love her very much :)
read more "Mixed feelings"

Tuesday, 21 June 2011

I'm back!!! Yippeeee!! no Bloggers Block for me!

Oh blog, how I have missed you. It's been far too long (almost a whole month!) and in that period there have been so many times I've longed to sit down and tap away to let it all out. With both girls' birthdays, plus my own, 2 other close family members', 2 best friends' and a few random school children to buy and wrap for, there's been never a dull moment. Oh yes, and not forgetting some HABA toys to review and a fabulous holiday in Sardinia - more on those another time.

I really didn't intend to stop writing for so long, and it certainly wasn't a case of Bloggers Block, as the thoughts are all constantly there in my head. I just lacked the time to be able to spew them out in any sense whatsoever. Which doesn't bode well for the re-start, so please do forgive me Smiley

To bring you all up to date, life is fine if somewhat manic. Sasha has been slightly unsettled for the past week with her 4th (wow, that time has flown!) birthday in the middle of it. Generally everyone keeps saying how well she is doing, and at nursery she certainly is, but in a way it's a bit like having a pressure cooker on the go. Tamsin is mostly a star as usual, but we do notice certain behaviours creeping in which are obviously a reaction to Sasha's problems too. Her dad sat her down and explained a little more about autism (in a very basic, non-scientific, Sasha-relevant way!) which seemed to go in and help a bit. The next evening she had friends over for playdate and tea, and when they asked why Sasha didn't stay sitting at the table for long for tea, Tamsin blurted out 'yeah, well, she has autism'.  Smiley

Think it was probably a little bit lost on them, and I'm not entirely sure Tamsin was using it for exactly the right reason, but we let that one go. I also refrained from pointing out that Sasha is only just 4, and Tamsin still rarely sat at the table to eat until after she turned 5! Tamsin still suffers from a terrible case of 'ants in the pants' at mealtimes even now....

The past two mornings I have really struggled to persuade Sasha to get dressed in the morning. She runs off and puts up a real struggle - so much so that on Monday I had to put her in the car still in her pyjamas. As we arrived at school the first friend of hers we saw was dressed as a pirate (someone got the wrong day for dressing up, whoops! Got that excitement to look forward to soon...) and the second was in her own clothes as she was poorly and not going in. So that didn't exactly strengthen my case to Sasha as to why she should change into uniform! Wouldn't have made any difference if they had been in theirs anyway, to be honest - Sasha is certainly not one to be worried about looking or acting differently.... Once I had left her at school she was then apparently quite happy to change into uniform for the teachers, typical.

I'm looking forward to her start in Reception in September mainly because she will be allowed to wear a school summer dress, yippeee! This will make her extremely happy - the less clothing the better (i.e. no tight waistline due to sensory issues) as far as Sasha is concerned. I'm still not really sure what the school will say when she wants to carry on wearing these dresses all through the winter..... she doesn't feel the cold of course, so will see no reason to change to a heavier one.

Tomorrow is the day when we all find out which reception class/teacher our little ones have been allocated, and who their peers through the school will be. I am intrigued to find out, but am definitely thinking 'Que Sera'. I was given a great bit of advice; that I should try and stand back as far as the schooling goes, and wait to be asked for help before getting too involved. I am still feeling very positive about the next year, after such a great start in nursery, and am eternally grateful that we decided on such a good school when choosing for Tamsin. Ha, wonder if I'll be linking back to this post in the future when times are tough. I probably thought similarly about the original nursery we had for Sasha before they said they couldn't cope with her! Ah well, water under the bridge, their loss Smiley

For now I'm going to sign off so this doesn't get too wordy, but I know you'll be waiting with baited breath for the 'back instalments'....
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Sunday, 22 May 2011

Carpet update - it's better, but not a lot....

ta-da! sure no-one will notice.....
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Silent Sunday

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Tuesday, 17 May 2011

Birthday picnic and ASD challenges

So, it's late, and I probably shouldn't be writing this post (zzzzzz) but just wanted to share some of the highs and lows that make up the autistic spectrum.

Today was mostly a good day, with a little challenge thrown in. My lovely parents have arrived to stay for the week as it's Tamsin's 6th birthday today (6 years since I lay exhausted in that hospital bed, wow, I can hardly believe it!!). The day started off beautifully, with both girls in our room opening presents. Sasha had a couple of 'distraction' presents, but then coped remarkably well when I insisted it was Tamsin's birthday, not hers, and instead of trying to open them she then passed all the presents to her big sister. Tamsin was remarkably patient with all this, and enjoyed every single one of her presents, which was a relief!

So a lot had gone on before going to school time. When I asked Sasha if her grandparents could take her to school, she considered it shortly, before asking for mummy to take her, but grandparents to pick her up. So all seemed well, and I left her happily at nursery. I did mention to the staff that she may be unsettled, as so much had happened 'out of routine', and whilst she seemed to be handling it well, these things often have a way of coming back on us, so to speak.

Well boy was I right. Grandparents duly dispatched at lunchtime to collect from nursery, but Sasha had a huge meltdown and refused to leave with them. She requested mummy (who was busy at home making 6th birthday cake) and was very distressed. Fortunately as I was at hand, I could whip into school to alleviate the problem. I arrived about 30 minutes after lunch club end, during the afternoon nursery session, and of course as soon as I saw Sasha all was right with the world again.

Strangely, this made me feel both sad and in a weird way happy at the same time. Happy is not the best word. Probably 'relieved' describes it better (although still admittedly weird), the relief that others can see the extreme behaviour, that in turn leads me to act in strange ways to avoid it sometimes. Sad as it just highlights how different she is from the other children. Of course it makes it extremely difficult - but not impossible - to leave her to be collected by others, or go on playdates etc. It really is the unpredictability that is the most stressful thing we live with - the day before in fact, she'd had a brilliant day, and even requested that another parent collect her after nursery (surprising but welcome!).

It's the 'extremeness' (sorry, my writing terrible tonight, too tired!!) of the reactions which is difficult to describe. Of course, if I hadn't been available, it wouldn't have been impossible to remove Sasha from nursery - she could have been taken out kicking and screaming, and would have eventually worn herself out and slept with the exertion.  As a mum, it's just difficult to see the distress that it causes her, not because she's being naughty, but simply because things are out of sync. Just not easy for her to deal with, in the way that 'we' all do every day of our lives. Lucky us.

The day ended on a much higher note with a beautiful impromptu picnic party for Tamsin suggested by Sasha, complete with mini cups of tea (water), candles blowing out and birthday song singing ceremony, and both girls giggling and playing nicely in turn in the bath. Let's wait and see what tomorrow brings.... never a dull  moment ;)
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Wednesday, 11 May 2011

Can I hear a 'whoop! whoop!'?!

So, have not blogged for a while now - partly because I get into trouble for spending too much time on the computer, but also because there always seems so much to say and not enough time to say it.

Tonight, however, I want to share some great news - Sasha wears big girl knickers!! As in, she's fully potty trained, day and night!

I had the great pleasure today of taking a full (unopened, unused!) pack of nappies back to the store for a refund. I have of course still got a small secret stack of nappies, but hope desperately I'll never have to stand on that chair to get them back down....

I'm amazed as this was the last big 'issue' for us to conquer, and we'd decided to put it off until after our next holiday. Towards the end of these Easter school holidays however, Sasha started 'toying' with wearing knickers a bit more - mostly when she thought she wouldn't need the nappy. So we had very few accidents at first fortunately (although could have done without the particularly large one on the only new carpet in the house...!).

When it came to the first day back at school nursery, she asked to wear the knickers so we just went with the flow (pardon the pun Smiley ). She had a wee accident 2 days in a run at nursery but by the 3rd day had sussed it all by herself, and also asked for the knickers at night-time! I was slightly apprehensive about the middle of the night sheet changing palaver, but (squeezing wood very tightly here) she has managed to stay dry every night since.

On Sunday she got very distressed when she was trying to get to the potty but didn't quite make it in time, and though she asked for the nappy back, I stayed strong - phew! Ever since she has taken great delight in 'making mummy happy', and she shows us every single wee and poo on the potty, which of course we've been rewarding greatly lest the novelty wears off. I'm particularly pleased that although she favours the potty downstairs right now, she doesn't seem to have an issue with sitting on the toilet here or elsewhere either - we were warned that if she learnt one thing (i.e. the potty) she may hold onto just that for a long while.

So fingers crossed it continues.. roll on having more space in the luggage for packing my own clothes this time we go away!! Sasha is 4 next month and I know lots of people would not see it as an achievement for her to be trained so late, but believe me it was worth the wait to have the pain-free result.

Today I'm feeling slightly worn down. Sasha has been in a brilliant mood over the last couple of weeks, so she's not overly challenging at the moment, and of course she's as adorable as ever. However, it is difficult to describe just how wearing and irritating it is to be asked the same question around 30 times in the space of 3 hours... 'is it raining mummy?' or a slight variation 'it's not raining, is it?' or even 'is it summer?'.... It doesn't matter how many times I answer these questions, they still get repeated. I mean, I know we've been lucky with dry warm weather for quite a while now, but we only had a few spots today! Poor old Tamsin was also on the receiving end of it as Sasha requested her favourite recorded TV programme several times in a row this evening (despite it being on!!). This might sound petty and something that should be easy to deal with, but repetition and persistence are two keywords that come along with Sasha's autism sometimes - I'm sure I'll blog about that another time!
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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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