Wednesday 13 April 2016

Denial and the V-Word

Continuing now with recaps of my blog posts in the first couple of months after the diagnosis of autism for our girl. The writing in blue below was only five weeks after we had seen the paediatrician, and it describes a trip away to visit family which went better than expected. 

Sasha having fun during our family trip away in February 2010, 5  weeks after diagnosis. She was never really a fan of looking at the camera and smiling...
At this point in our 'journey' (apologies to all those who detest that word), it seems as though I was still questioning everything, and trying to find reasons for Sasha not to be classed as autistic. Much like the mum in The A Word this week. 

If you'd have asked me last month, six years on from diagnosis, I don't think I'd have recalled that time when I almost doubted the diagnosis. For most people though, there is generally a denial stage before moving on to acceptance. 

I think if parents are being honest with themselves, most of them wouldn't say that they were happy that their child is autistic. Not in a way that autism should be seen as anything wrong with a child (it's not), but in the way that autism certainly doesn't make their life in this world an easy one. Not sure I'm explaining that very well.... at this stage in our lives, we can look back and say that we are happy that Sasha has a diagnosis, we obviously don't mind in any way that she is autistic, we wouldn't change her for the world now we have her, but for her sake would it have been easier to not be autistic? Or maybe the point is that it would have been easier for us?

That's one long discussion right there... and this old post then also touches on the speech and language issue, and right at the end the MMR jab is mentioned.

I've never gone into the thorny topic of vaccinations in detail on my blog, and I certainly don't want to start now. For many in the autism community though, even the word 'vaccination' is a bad thing. It stems from a time around 25 years ago when a British doctor raised concerns about the MMR vaccine. His report was subsequently discredited and he was struck off. There are probably three schools of thought among parents - those who strongly believe that autism is caused by vaccinations, those who absolutely don't, and those who don't feel they have enough information to say one way or another.

All I can tell you is that both my girls had the MMR jabs, at around the same age. Our eldest girl is not autistic. If you don't vaccinate your child, you are putting them, and other children, at risk of death. 


Well it's been a few days since I last posted and a busy half term - still lots to think about and little time to write. I'm amazed at how well this week has gone actually, Sasha has coped with all the changes from routine admirably - in fact I'd possibly go as far as to say she's thrived on it! Something I didn't really expect - and which has of course got me thinking in circles again, as her behaviour has really been exceptionally good for a toddler, rather than just 'normal'.

Half term started with a trip up to my parents for my mum's birthday weekend. Sasha had fallen asleep for the last 45 minutes of the 3 and a half hour trip there, but woke up just before we arrived. As we stopped in the car park she seemed fine, and was eager to get out of the car. She did her usual trick of pretending to act shy and snuggling into me as we saw Nana and Bampi again, but as soon as we entered their flat she was running around as if she owned the place - she clearly remembered it, and her bed in particular. This time we decided to put Tamsin to sleep in the same room as Sasha (previously Tamsin slept in the room with us due to different sleep patterns of the girls), so poor old Tamsin probably felt a bit demoted, but as we explained to her, we thought it would be nice for Sasha if she had company in the room when she woke up. So that led to Tamsin waking during the night at 3am and calling for me, and both making their way together to our room at Sasha's early wake-up time of 6am - yawn. My heart was really warmed that morning though as they both climbed into bed with me, and as I dozed they played a little game of holding hands and pushing which caused lovely giggles from both of them :)

The first evening we were there I went a bit mad and got over-stressed about tea time being late, surprising everyone I think including myself. Especially hard for anyone else to understand as the girls were being well behaved and fairly patient at the time. The trouble is I know only too well how quickly Sasha's need for food appears (she is very impatient, can't imagine who she takes after ;) ) and as I was trying to explain to husband later, it's really only me who ever sees that. It's difficult to explain to others though, not least because if anyone else is cooking it doesn't happen to them, as the girls will of course have me then elsewhere to entertain them, and so nothing is quite so urgent. I'm not the world's keenest cook anyhow, so it makes me majorly stressed to be trying to cook whilst being grabbed and pulled by the hand to the fridge to find a quick fix which then means tea won't get eaten. Tamsin by now is old enough to understand and wait, but I'm sure at Sasha's age she was probably just as impatient - although food was never such a great pull for her anyhow.

The next day we went out to a Wacky Warehouse pub as a birthday celebration (lucky mum) and this time Sasha did show her impatience - from the time we got in there at 430pm she was desperate to eat and wouldn't let me be until we'd chased the waiter and had the food in front of her. Not that she really ate anything other than garlic bread and chips, but it certainly pacified her and the difference in behaviour was instantly noticeable to me - but maybe the issue is that I'm too close to the action as it were, and others just don't see it? The fact my older brother's children are all wonderful eaters probably didn't help (although obviously not their fault!!!) - my niece asked for a second bowl of spaghetti bolognese while we were there, something I could only dream of hearing from mine!!!

The second night sleep went much better and on our 3rd day we sadly ended up having a split day - Tamsin and Dad went with my brother and co to the indoor play place, while my parents and I waited for Sasha to nap, then when we turned up at the play place the others were all just leaving. However Sasha took it all in her stride and had a fantastic time alone on the soft play - once I'd help her find a path up to the big bumpy slide she was happy to carry on repeating that on her own or with me, although I laughed lots when she dragged Bampi and Nana up with her! In some ways she's much more adventurous than Tamsin was at her age - it's only recently really that Tamsin has had the oomph to do things like that on her own. Generally Sasha also seems less bothered by other children and I think she would give as good as she gets in the face of any trouble, as opposed to Tamsin who will run away crying!

So a lovely time, although hearing Sasha's younger cousin start to talk and say please and thank you at the age of 22 months does of course sadly just make me more aware of how far behind Sasha is. Saying that, I do think I have heard Sasha say 'thanks' once or twice recently, although of course it's not really recognisable as that. But in her own way I think she's trying. Just wish we could get on and get her some help now - I'm still in shock that the speech therapy team have said it's 6 months from assessment before therapy starts.

More to write re the past few days but must go sleep now and hopefully update again over the weekend. Am taking the girls for the swine flu jab tomorrow, not looking forward  to that at all! Have to be honest that I still want to read up about the MMR jab and its alleged link to autism, although I know our GP laughed it off as ridiculous....


For more information on autism please do visit and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit

For Day 1 read: A is for April and Autism Awareness

For Day 2 read: AAA Day Two

For Day 3 readAAA Day Three

For Day 4 readAAA Day Four

For Day 5 of our story please read: AAA Day Five

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