Sunday 14 November 2010

Hello all

Time to write this one now. I'm not going to go into all the Halloween stuff again, you can read that on my other blog: http://sajasper.blogspot.com/

I'm not going to go into Top Gear Live either as you can read about that there too! Well, from Callum's point of view and mine from the point of view of upgrading tickets.

So what am I going to write about? Actually, I'm not entirely sure! But I was determined to write something, so here goes.

I have noticed that my two blogs are sort of merging together on occasions. It's really difficult to write about an event that includes Callum without it having reference to his Asperger Syndrome, so I do feel that it should be written about on his page. However, they are events that I've attended too and I have my own views on them, but I don't want to bore everyone (especially those that read both blogs) by writing about them twice.

So, here's the dilema, what do I write about? Reading back the blogs, it does sound like my whole life revolves around Callum and in a way it does, but I do have a life of my own as well. And that life also contains apprehension, boredom and frustration about trips/events just as Callum's does, but I have to push those feelings to one side in order to deal with Callum first and foremost. I'm sure most parents feel like this, but on speaking to other parents with ASD children it does seem to be a particular common subject.

Take, for instance, the Top Gear trip. Callum was worried about going; he was worried about being on the train (apparently he is bored with trains now); he was worried about the underground - too many people, too noisy, worried about getting on and off; he was worried about the queue of people at Earls Court. It was raining and he was stressing about that too especially as he'd insisted on wearing his crocs and they had a hole in the bottom so his foot was wet. He was bored! The queue moved quickly once moving, but they were letting in small groups at a time so it was very stop, start, stop, start. This made him grumpy and frustrated. When we got inside, he was concerned about where everything was. We headed straight to the Gold Enclosure so we could get a bit of down time and that stressed him as it had a long escalator to go on to get to it. He stressed about queuing to go into the show; he stressed about coming out of the show. He wanted to go to the Paddock, but once inside, he wanted to get out. He loved the show! He loved the cars outside! But even then he stressed about getting his photos on his DSi. He almost didn't get his photo taken in the Peelp50 because he was nervous about the girls and the cameraman. He wouldn't go on any of the simulators even though dad encouraged him to. He then got tired and wanted to go home (there and then!), so he stressed on the tube as it was now rush hour and packed. He stressed at the station as that too was packed. He ate his Burger King on the floor, but was fine. He then panicked about getting on the train and moaned constantly because everything was running late! He then moaned when we got off the train as he didn't want to walk home and then when we got home he moaned as he didn't want to go to bed when it was time! All of this was expressed out loud!

Now all this sounds like he had an awful day, but he didn't, as anyone who read my blog on his page knows. He loved the day!! Wants to go again! What I want to point out to everyone is that this is a typical GOOD day! And I have to deal with it. I'm almost so used to it now that it isn't until I look back and actually write it down that I realise just what I deal with each time - to me it is normal. Now I'm not saying that neuro typical children don't have moans and groans and don't get bored or frustrated, but do they moan, groan, worry, stress every single time, all the time and vocalise that stress! I don't think so. My daughter was never like this although she did have her quirks and we have since realised that she may be slightly Aspi herself; she freely admits to being a bit more than just a little OCD. But I went out for days with her just as I do Callum and I never remember her being quite so emotionally/mentally demanding.

I'm not after sympathy! I don't want people to think "how awful". Callum is brilliant and I love him. I don't want him changed in any way. But what I do want is people to realise that having an Asperger/Autistic child is not always easy. It demands a lot of extra committment, patience, planning, organisation (and yes that is different from planning) and emotional awareness than normal. This can be very tiring, it can mean that a day out turns into a blur because you always have to be two steps ahead. And remember, this is the invisible disability! It isn't obvious to an outsider.

What I'm trying to say is that I, too, worry about journeys - will it get there on time? I hate waiting around in queues, especially when it's raining. I don't particularly like rush hour, but I can cope with it. I didn't know where anything was when I got there, but that was ok, I'd find out. I don't like crowds, especially with a child in tow, as I worry about getting separated. AND, obviously, I'm worried about most things if I have Callum with me as I'm trying to make it easier for him and that can mean having to do things that I'm not particularly comfortable with doing myself. Ie, asking totally random people to do something or another because of Callum or asking for extra help. I'm sure we all feel like this, but we cope! Callum, however, doesn't, so I have to cope for him.

I feel like I'm losing the thread a bit here and I'm off on a ramble, which I probably am, so perhaps I should stop. Like I said, I don't want sympathy. I want understanding. I want things to be put in place that makes my life and my child's life easier. On the whole that happens. On the whole everyone that I've had dealings with has been helpful and brilliant if I'm honest. I do get the odd stare from people and I do know there are a few people that do not understand why I should be entitled to extra money because of Callum or that we can get special offers because of his disability. But to those I say "come and spend a day out in my shoes". See Callum's reactions to things; see how much effort has to go into it and see how something so simple can make the difference between a happy and intergrated child and an angry, violent, miserable child who doesn't understand the world around him.

There, I'm done!
Cya