Thursday, 24 June 2010

Tears and Tantrums for the EYAS

So, there's a million other things I need to be doing right now (like laundry, speaking to and emailing people re various matters etc) and some things I'd like to be doing (like watching Loose Women, reading Heat etc), but wanted to post as there is so much buzzing round my head at the mo and sometimes it just helps to get it out! It was Sasha's 3rd birthday last week and we have had quite a patch of good behaviour now. That always makes you question whether the diagnosis is right, but I've come to realise it does go up and down in cycles...

Today was the 4th visit from our Early Years Autism Specialist (who for privacy I won't name but will call the EYAS!). We now have a regular weekly slot where this specialist comes to our house for an hour and 'plays' with Sasha, working on her behaviour and generally assessing her. She is lovely, and Sasha already looks forwards to her visit - although that is partly of course because she brings a big bag of toys with her each time! I don't sit in with them, but hang around within earshot so that I can tell what is going on.

Sasha is given some choices and is sometimes directed what to do - and that is the bit where it falls down slightly. Today however it came crashing down in a big way after about 20 minutes, when Sasha was told she could only play with the cake game after doing the teddy bear puzzle. Now, Sasha likes the bear puzzle and has done this easily before, but today she decided she really didn't want to. So that's when the tantrum and tears started, she came to find me, and couldn't be persuaded to do it no matter what. It was hard for me not to console her, but eventually after realising I wasn't going to give in and neither was the EYAS, she stomped off, took herself upstairs, lay down on the bed and covered herself with the duvet and then went to sleep (which is how I now have time to type!). 

I then had a good chat with the EYAS who explained why she was being tough with her; I understand totally how it needs to be, to try and teach Sasha some authority and prepare her for the school days ahead, so I don't have a problem with someone else being tough with her. As long as they understand her, and don't punish her for that kind of behaviour, but work with it - which is where my big concerns about school and how she will manage start to creep in. I also understand that a teacher with a class of 30 children can't spend individual time with one child - but that may be what Sasha needs to flourish. She is certainly intelligent, as the EYAS has also commented on - she is quick to pick up and understand the puzzles and games. 

She just has to be in the right mood, or you have to know how to coax her into that mood - a very difficult feat which even I can't manage once she has started the downward spiral! I think we realised after talking it through that apart from the heat, and the fact Sasha may be coming down with the cold which Tamsin has had, her routine was changed this morning by us going to assembly (which she's not had to do before) and so her mood was probably not great even before the EYAS arrived today.

I am so grateful that Sasha was diagnosed early and that we are now getting this EYAS regular help, especially as she is so lovely. However I can see Sasha building up a great relationship with her, and sometimes doing what she is requested to by her, but I'm not so sure it will translate/cross over into the classroom environment. Sure the initial help and meetings will help the start of school, but Sasha can't switch her autism on and off during the day or on specific days, so what happens the rest of the time? 

I had a good chat with a lovely mum of a boy with autism who is already at Tamsin's school, and hearing her experience is good on the one hand as it means we can be more prepared, but on the other it makes my heart sink as I know it is all going to be a fight to help Sasha, and that is quite tiring (especially in this heat!). The trouble is, as she put it, when you've met one child with autism, you've met one child with autism. It's not really a condition anyone can understand fully, and different aspects apply to different children. 

Since the new ruling that any adults or parents can set up 'free' schools, I wonder if Aspergers or High Functioning Autism schools will develop, as these children need to be treated as individuals. A specialist learning school isn't necessarily the best environment for them. They probably all need 1-1 care in a different kind of way though, so maybe home schooling or private tuition is best - but then of course that doesn't help them to learn from their peers about what the social norms are, the part that they struggle to understand. What really needs to happen is that the teachers, assistants, in fact anyone in contact with Sasha, all need to be able to listen carefully to a detailed description of her character, remember what upsets her, and understand that her brain is wired differently. 

She is not intentionally naughty (most of the time!), she just likes routine but at the same time to be very independent and lead her own life. Flexibility is the key word - obviously she can't be allowed to do naughty things without being disciplined, but the type of discipline may need to be different to have the right effect, and just maybe the boundaries need to be a bit more flexible in the first place. Does it really matter, for example, if she wants to play with dice for 10 minutes when everyone else is listening to a story, if she is after all doing what they want for the rest of the day? Of course even I don't know it all, or what the right answers are all of the time, despite spending all my time with her.

Guilt is something I think most mothers feel, whether it's not spending enough time with their children, not giving them the right food or not matching up to others. I feel guilty that Sasha will not have the 'normal' life other children get, and guilty that I'm not doing enough to help her, particularly with her speech. I'm guilty that Tamsin has to put up with Sasha's behaviour sometimes too, and that she doesn't get as much of my attention as she might have otherwise had. 

I felt guilty in assembly this morning, as Sasha did not of course want to sit still and watch/listen to what was going on, so I had to let her wander into the nearby classroom (where she found funnily enough a pair of giant dice that amused her). When another mum with a younger child is sitting nearby and doesn't allow her younger child to do that, it makes me feel bad that I do 'give in' to Sasha and let her do it. But the consequence of not letting her wander would literally be an assembly which no-one could hear or enjoy. Of course I would never have let Tamsin wander off (although she wasn't generally that way inclined anyhow!) but the difference is that although there may have been a few tears from Tamsin, she would have understood that I meant she needed to sit still and be quiet. Sasha would not want to understand that, and would therefore need restraining physically - and a gag in her mouth might do the trick but would be of course totally unacceptable! 

However despite the guilt my heart did jump and I couldn't help laughing, almost crying, at the point in assembly when the birthday cake candles were lit for the children whose birthdays it was, and everyone sung happy birthday to them..... Sasha loves this - she came running back in from the other classroom, and was the first to shout a big yay and clap very loudly at the end of the candle blowing, prompting everyone to look round and smile at her. Priceless! Thank goodness she is so good, cheeky and lovable most of the time, it more than makes up for the difficult times.

Right off to do that laundry now... and more on the speech therapy or lack of next time.
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Thursday, 10 June 2010

Rice Krispies and Water

OK so just a short one tonight but I've kept you in suspense long enough (is anyone reading this? Does anyone really care??!!).....

A large part of my time at home seems to be spent on my hands and knees in the playroom (otherwise known as Sasha's room), clearing up after her, in particular foodstuffs. She is great at breakfast time (unlike number 1 who refuses everything) and generally eats a whole weetabix (some dropped off spoon onto mat, last little bit left in bowl), followed by some toast with butter (crusts left on floor, just off plate) and then for quite a while she was requesting a bowl of rice krispies, no milk. She then proceeds to have about 2 or 3 spoonfuls of these, but somehow after I've left the room it would seem the majority of the remainder ends up spread across the floor. And as we all know, once trodden in these make even more of a mess! To wash all this down (quite literally for a while back then!) she has water in a 'sippy cup'. She is more than capable of drinking out of an open cup - in fact she has better co-ordination than Tamsin did at her age - but the trouble is as much as she is thirsty and likes to drink gallons of water, she also likes to see it spread around a room on the floor or any other surface. It was getting a bit too close for comfort when it was over the TV stand next to the TV and above the DVD player. All done when we are out of the room of course, but we have the same issue with trying to explain to her what she has done wrong and her not really taking it in. At least it's only water; that's all she ever drinks despite having been offered juice etc - again so unlike Tamsin who did not ever drink water and has a minimal amount of juice.

I was thinking that there probably aren't many 3 year olds who still need a messy mat, but then I guess I perpetuated that by letting her sit with food in front of her much loved DVD collection. However I would have liked to see anyone else try to keep her sitting at a table for mealtimes only (a few have tried, rarely succeeded). She's a big snacker generally, and good with breakfast and lunch but rarely eats proper tea - her variety of food intake is quite limited. To be honest we allowed the same behaviour with Tamsin at her age, and I don't think any parents of children who eat well - everything that is put down in front of them (hello older brother) - would ever understand why I did this. For me it was just one way of coping with what was the most stressful part to me of bringing up children - mealtimes. Tamsin has grown out of most of the troubles even if she's not the world's greatest eater. She now understands why she sits down at the table at the requested times, and I'd not be embarrassed to take her to any restaurant or someone else's house, so I guess I always thought that Sasha would learn this too. She might yet - she is improving and will sit with us sometimes and even eat a semi-decent meal (if it's what she wants!) but then it's very mood dependent. At least her routines are not so rigid that they don't change every once in a while - I really admire mums of children with more challenging autistic behaviour than Sasha, they must have the patient of a saint!

Ah, you picks your battles is all I can finish with here.
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Monday, 7 June 2010

Party and holidays - 'normal' life stuff

Well long time no blog as they say...! Loads to write about and it'll probably all come out in a jumble tonight, so apologies in advance for that!

Had lots going on since my last post - namely a 5th birthday Princess party for Tamsin and a family holiday with friends to France, but also a visit from our Early Years Autism Specialist - more on that later.

The birthday party went pretty well (amazing what money can buy... just glad Tamsin has decided she's too old to love pink now after and not before it!). Sasha was amazingly well behaved that day, despite not having her usual lunchtime nap. In fact I'd go as far as to say she was generally better behaved than lots of others her age - she joined in with the party games with all the other children and had lots of fun, sat still for some tea and didn't even mind that she didn't get to blow out the candles on the birthday cake (her favourite thing ever!) - she only cried right at the end when she was really tired. Which is of course great news, but at the same time it makes things more difficult. I can totally understand how anyone else seeing her on that day would wonder what I'm talking about when I say she's a challenge, and probably wouldn't even believe the diagnosis we have. That worries me though, because as much as I'd like her to be totally 'cured', this isn't something that she will just grow out of, and I need her to get the help she needs for starting school and not just be written off as 'she's not that bad' or 'she's very mildly affected'. A teacher who has 29 other children to deal with will not have the time and patience to help with Sasha's understanding all the time.

So many people lately keep telling me how much she's improving, and things like 'oh I can understand her much better now', and 'she's so intelligent' etc etc, but as much as they mean well, it is almost as if they are trying to point out to me that she doesn't have a problem or that it/she's getting better. But nobody else spends as much time with her as me, and of course I can see the improvements for myself - but I can also see the times that are not going so well, her distress at unusual things, and the widening gap between Sasha and her peers. A couple of weeks ago I asked Sasha to put the rubbish from her fruit bar (see she does eat some healthy things ;) ) into a bin when we were out somewhere, and I was amazed when she did actually look at me, think about it and then go and follow my instruction. But most (almost) 3 year olds would be doing this routinely for some time already - and it's not Sasha being naughty not doing it, it is just the lack of understanding. Sometimes the difficult thing is remembering to ask her to do things rather than just clearing up after her, as when you're being ignored for so long it does wear you down a bit! And of course just because she's done it for me once, doesn't mean she will again anytime soon.

Another example is when I took Tamsin to Irish dancing tonight, and Sasha took her shoes off and wanted to stay in the room and do dancing too. Tamsin has a friend there who has a sister the same age as Sasha, who does already join in the classes with her older sister. But I just couldn't leave Sasha in there as she would maybe join in for the first 5 minutes but she would then most probably want to carry on doing her own thing, definitely not sitting quietly if she was asked, and quite likely curling up into a ball on the floor and not moving if she was remonstrated with. I can just imagine all the others dancing over her now! If I stayed in the class it would be no better as she would just look to me to do it with her and get bored fairly quickly anyhow. But the other girl her age is perfectly capable of following instructions, and understands when it is not acceptable to disrupt a class like that. There's another little sister at school who is already doing ballet lessons - something which Tamsin also started shortly after her 3rd birthday. I can't imagine when or if I'll be able to leave Sasha at an organised session like those which Tamsin has enjoyed - which makes me feel extremely grateful to nursery for the break! I do try to banish all thoughts of how the future might be, but even dealing with these little disappointments as we go along now, and all the tidying up after Sasha and managing daily situations does make me extremely tired a lot of the time.

Today I took Sasha to the Splash park, a great free facility in St.Albans which involves lots of water spouts and general good fun. It highlighted a big difference in my girls to me - Sasha was quite happy to wander off into it on her own, and smile/chatter at others her own age (although not actually play or join in with) whilst amusing herself. Tamsin was always clinging to my legs at this age, and wouldn't have been anywhere out of my sight. In fact she's still pretty much like that now, won't say boo to a goose and needs other children to make the first move to say hello usually! Sasha has shown me how nice it is to have a more independent child in some ways - but then unfortunately because of how she is, I do need to stand and watch.
I have been considering trying to get an appointment with a specialist at Ormond Street, as I know a couple of others have done. Not that I think she doesn't have autism, just that it'd be good to understand her specific problems and needs rather than sling her under an all-encompassing umbrella. So we'll see - maybe when life quietens down a bit! Anyhow back to today - it did take a turn downhill when Sasha decided she wanted an orange lolly, but the only one they had was the push-up (Calippo style) one. As these are too cold and hard to push up instantly, and difficult for little ones to do anyway, the having to hold it and wait was too much for her and the mood instantly changed so back off home we went. Again something you could explain to other children her age and they would get over more quickly. Ho hum.

Just come back from a week away at some gites in France with friends who had other children similar ages. We had a really lovely time, didn't do much at all so really quite relaxing. Not sure the fact that Sasha had her DVD playing a lot of the time went down that well with the other parents, as their children all wanted to come in and watch!! But that's something I do have to let go, as it does calm Sasha down when she feels she needs it. Interestingly, Tamsin is not really that fussed when the telly /DVD is on anymore, she's quite happy to let it go in the background and get on with her own thing. So anyhow hols were great, and again Sasha was on great form most of the time, so I can see those who didn't know her so well wondering what the issue was. Guess I should be grateful that there seem to have been so many great times lately - just makes me a little anxious waiting for the next run of mood swings. Think it's a bit like the growth spurts that other children have - difficult to time! The flights went relatively well and I was very pleased that the extra £58 for Speedy Boarding paid off both times - we were actually first on the plane home! Sasha was really good for take-off and the flight itself, but obviously didn't like landing at all either time, and I had to pull her onto my lap to calm her down before she did herself an injury both times. Being tired probably didn't help, so I can only hope that situation gets better as she gets older.

Really must stop here tonight as it's turned into an epic.. so more to come on the Autism Specialist visit in my next post. We did have some good news in that we have been awarded the DLA for Sasha, which we will be able to put towards speech therapy.. more on that next time too. Oh and I've still got the water and Rice Krispies to write about, bet you can't wait ;)
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