Trust me, It’s hard to stay positive

My mum and I were having a discussion about how incredibly happy and positive a lot of writers are about their autistic children and every little milestone they make. When searching about how I can help Chris better, most of the time I’m only able to find posts about children on the high-end of the spectrum. Don’t get me wrong, it’s lovely to see parent’s expressing their delight to improvements in their children’s behaviour!

Unfortunately, for those of us who care for low-functioning individuals it’s not quite the same story. As you can see from the photos on this site, Chris is extremely photogenic and it probably doesn’t express the reality of his personality. He’s gone and broken everything I got him for Christmas. I do not for once feel angry at him for it nor do I think he’s being ungrateful. It’s just what he does.

I have to admit, the happy/positive posts about Autism sicken me slightly, and I feel a sense of relief whenever I come across a post  about the real struggle with Autism. It helps knowing we’re not the only ones having to to deal with constant bad news and difficult behaviour that never seems to improve. So I found this video floating around the web about Bill Davis and his son named Chris.  Davis has published a book called Breaking Autism’s Barriers as told from a father’s point of view. Anyway, enjoy!




New Year. New Methods?

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View from the wheel

Happy New Year!  🙂

It’s a new year. I gave the blog a new look.

I had a great time with Chris and the family in Singapore. It was short trip but I got a lot done for him. Unfortunately, I do believe he has regressed a bit since I last saw him. He has started being more destructive and anti-social towards everyone. He would take bottles of shampoo and soap and pour their contents down the drain, destroyed the keys on his laptop and cut the strings on his guitar yet again. What is this? Why so destructive? He has nothing to play with now and therefore nothing to entertain himself with. He’s bored at home with just an xbox to play with perhaps some toys.

So, I got him several different presents for Christmas as I wanted to see what interests he had now. I gave him:

  •  a mini whiteboard and he seems to be using this quite a bit drawing lifts and toilets. Great!
  •  a light-up tambourine and he looked so happy with it. I heard from mum it’s broken now. Hmm..
  • a plant for his room so he can water it as I thought he enjoyed horticulture at school. This was a mistake as he wants nothing to do with it!
  • a room redecoration. I tried to emphasise on sensory items and lighting. He really likes clocks and chairs but he wasn’t excited about much else. He gave some things back to mum.
  • the Madagascar Xbox game he’d been raving about for so long. He’s not stopped playing it since. That’s wonderful in a sense, but he hasn’t done anything else! Furthermore, when he gets frustrated with the game, he begins to self-harm, so much that he bled through his nose and only stopped hitting his head when I physically showed him the blood.

Here’s a recent paragraph from Shannon Des Roches Rosa, senior editor of TPGA:

“Sometimes aggression and self-injury happen because non-autistic people do not recognize or respect autistic ways of being. It may seem odd to outsiders for a person to constantly want to have a straw in their mouth, for instance, but holding that straw may be intensely soothing to that person and allow them to function in the world better. So if a person needs their environment just so, or needs to repeat phrases for reassurance, and they are not being disruptive … the humane option is to accommodate the autistic person’s preferences.”

Thinking Person’s Guide to Autism

Now, he dislikes going out on family trips. He seems to just enjoy his own company. I read that this isn’t so good for him.  This is extremely difficult. Nothing we’ve done has managed to improve his mood. So I do believe, we need to think of new methods. We must constantly remind ourselves to put ourselves in his shoes. The constant question on my mind is – how do I improve Chris’s quality of life? I keep the above paragraph stored in memory but I’m running out of ideas on what I can do.

On a lighter note, he always loves Christmas and he absolutely enjoys present time. This year we also had dinner on the big wheel in Singapore. He loved it 🙂

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Chris on the Singapore Flyer