Sunday 1 October 2017

Conversations can be and are heartbreaking!


Night time conversations with L can be absolutely heart breaking.

Late at night, or when L is meant to be going off to sleep, seems to be the time when he replays events, conversations and things that he observes throughout the day over and over in his mind.

Questions from L like .....

"Mummy, why can't I write words?"

"Mummy, why can't I write letters like my friends at school can?"

Questions such as these bring tears to my eyes on a much too regular basis.

Several nights ago L and I had a conversation that wasn't any easier than previous conversations. It started like this .....

"Mummy, why can't I read like sissy and H and R? I just wanna read a book a self!"

Oh my darling boy, my heart breaks every time that you ask me a question like this.


L is desperate to be able to read by "a self" as he so eloquently puts it. He loves learning. He loves books. He has a stash of his favourite books in his bedroom that he often hides on his bed. At least once or twice a day L will bring a book to O or one of us and request that we read it to him, over and over again!

He loves just watching me read when he should be going to sleep, although he becomes quite puzzled when he realises that the books that I read don't have pictures.

"That crazy Mummy! No pictures? No way!"

We usually try to turn conversations like these around and highlight the skills that L CAN do exceptionally well. Skills like swimming, running really fast, knowing all of the superheroes and so on.

We'll explain that he can swim incredibly well, but some of his friends don't find swimming easy to do. We explain that while L finds swimming an easy skill to learn, other people need to do lots of practice to be able to swim well.

And that while some people, like O, find reading very easy to do, he needs to practice to be able to read.

We've recently installed an app on our iPad that "reads" to L as he turns the page of the book within the app. He can not get enough of the app and will happily sit on the couch reading a book on the iPad. Most of the time while the app is running he is looking at the picture on the iPad but every now and then, we can see that his eyes are trying to follow the words of the book. Money well spent!

We also remind L that one day he will be able to read books just like his big sister and his school friends.

Phrases like "you will" and "one day you" and "you'll get there" are said many times every week in our house. Phrases like these seem to lift his spirits and spur L on to keeping trying and reaching new heights.

But we never focus on the things that L can't do yet, as we don't want the word "can't" to become a permanent fixture in his vocabulary.

We also never tell him that the reason that he is not yet able to read or write sentences is due to his autism. I'm not saying that L would, but I don't want him to use autism as an excuse to get out of something. I don't want L to become despondent that his autism, which he will have for life, may prevent him from picking up new skills at the same rate as his friends will learn the skills.

In saying this, L does know that he is autistic and we are instilling in him that autism is a different ability and that different is a great thing.

But it is at times like when we have these conversations that the reality of how hard life is with autism for L hits me like a tonne of bricks. It hits home hard.

I know that L will get there in his own time, just at the moment he just needs to work a little harder than O and his school friends.

I just wish that I could make life easier for him. I don't want to take the autism away as it is a part of who he is, I just wish that life was easier for him.

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