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The autism chronicles

The autism chronicles

The last time I wrote, it was about autism and us, as a family unit. You can read my previous article here: Autism, A Stories Worth Telling

I finished that article with some things that you shouldn't say to a parent of an autistic child. One thing I didn't put on there, which I hear a lot is “but all children do that”.  Yes, sir/madam, you are correct.  All children do a lot of things that I mentioned.  It’s the accumulation of those, AND all the other things that they do that put them on the spectrum. I have 2 boys that are 5 years apart. They sit at very different places on that spectrum.  

An easy-to-understand guide to autism spectrum disorders, including common symptoms, visit http://www.autism.org.uk

There are things you learn about when you become a parent of Autistic children.  These are things that like many parents in our positions, we didn't know about before our boys came along.  Do you know what 'stimming' is? It's not in the dictionary...yet. It's a word that we parents use to describe the self-stimulation that our children display, the physical, or verbal, things they do, over and over again. My child stims in a way that is easily disguised, he repeatedly runs, back and forth. Sometimes, if really excited/happy/anxious it can go on for 20 minutes or more.  All children do that you say? OK I will give you that, children do like to run about, but will you be as understanding when my son is 15, and still doing it? My other son verbally stims, the more excited he is, the louder and faster he talks.  Again, it comes to 'all children do that', but your child can stop, whereas mine can’t.  I will tell my son to quieten down, to use his indoor voice, and if I am lucky, it may last more than 2 words.

(An interesting article written on ‘Stimming’, from the perspective of a ‘sufferer’ of Autism.  You will understand the use of the inverted comma’s around the word ‘suffer, when you read the article: The Obsessive Joy Of Autism.

The other thing you may not have heard of is 'masking'.  A child, particularly my 10 year old, can seem to be perfectly fine on the outside.  It's often been said that RJ is a model student; he is smart, happy and very, very chatty.  In school he won't show if something has been bothering him, and he doesn't necessarily show me, but after all these years, I have learnt to read the signs.  He will shut himself away with his current obsession, away from all human contact.  If something is really upsetting him, he sleep talks.  Then I know I have to start looking at his actions and surroundings, to see if I can discover what has upset him.  

People outside of our immediate family don't understand the obsessions.  All children have a particular toy, action figure, or cartoon character that they love.  For my boys it's a little more than that.  My 10 year-olds current obsession is a game called Minecraft.  It's a game that spans all the different consoles.  My son will sit at the kitchen table with a laptop playing, he will then move to the Ipad,  and then to any other console available to him.  Once he has become engrossed, he will forget to eat, dress, and even sleep if I would allow it.  I try to limit his time on it, but not always successfully.  A few days before writing this, I tried to talk my son away from the game, it almost led to a complete meltdown.

My youngest is currently obsessed with Lego, any type of Lego, but he loves the little figures.  I actually like this one because he needs to interact with us to get it done.  Also, it can be used as a tool to get him to do things.  Most parents would call this bribery, but autistic children like rewards; it doesn't have to be a toy.  A lot of children respond very well to star charts.

(To find a downloadable star chart to help your children’s progression, visit www.ojosworld.com to find links to netmums)

I don't have to deal with just one of these situations; I have to deal with ALL of them.

I know how I must sound to people when I am out with my children and I seem to give in to a bit of nagging, but I have to choose my arguments.  If I give in to a cheap toy as I walk through a shop door, it means that I can get the rest of what I need without any upset.  Shops in particular upset my children, they're too bright, too loud, just too everything! If I can get my child focused on the cheap toy I have purchased, everything else gets pushed to the side, and the experience becomes less traumatic for all of us, most importantly him.

If you see a child playing up in a shop do you tut and roll your eyes at the mum? This happens more than you could believe.  Do you think to yourself that the child needs discipline?

People will often comment on how lovely and well behaved my children are, yet they have had some major meltdowns in very public place.  My children do not lack discipline, they are loved and they are never ignored, it's just that some situations are too much for them, or the wrong thing has been said.

I'll leave you with an example.

My 10 year old is a very well spoken, happy and polite child. When he was a bit younger we went on holidays, to the seaside.  We had woken in the morning in a good holiday mood, and he had asked to go swimming.  We had of course said ‘yes, that would be lovely’. We would all go swimming 'in a bit'.

That was my mistake.

'In a bit' could mean anything.  We had planned to have breakfast and then get a few bits from the local supermarket…then we would probably go swimming.

My son, at that time he was about 5 or 6 years old, and didn't understand what that phrase meant. He is a very literal child, and if you say ‘in 2 minutes’, he expects it done in 2 minutes!

By the time we were half way around the supermarket, he was simply too frustrated.  He began knocking things off shelves, shouting at us and other customers. To most, this would be classed as really bad behaviour.

We didn't know then, but he was showing typical autistic behaviour.  Now I know and understand more I can look back on that day and spot every mistake I made. None of the bad behaviour would have happened if I had simply said.

'Yes, we will go swimming today, after we have had breakfast and done a bit of shopping'.

That simple sentence would have changed the whole day.

So don't judge us, we are trying our best. (Picture: linh tinh)

Jo will hopefully be back soon with more insight in to her world.  We look forward to reading more, and appreciate her sharing her experiences, and helping spread awareness about autism.  For more information on dealing with Autism, parenting, and the trials, tribulations and great joys of parenting, join us at http://www.ojosworld.com/.

Autism, a stories worth telling

Autism, a stories worth telling

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