When you cannot say as much as you want to say, then sometimes you have to resort to controversial behaviour to get noticed, to get some attention. When I got home from work last night, I sang to Yorkshire Grandma as it was her birthday. Joshua was upstairs in his bedroom, watching Lion King from his bed, when I got home so we had a few moments alone while she opened her gift. He then heard my voice, I presume, as he appeared downstairs for a hug and I made a fuss of him too.
I then talked to Joan again about how she had spent her weekend – house and pet sitting for us – and her birthday so far, so Joshua was ignored while we talked. He resorted to all sorts of behaviour to try to get our attention and not all of it was good, but it was mostly effective , albeit temporarily:
- He put his hand across my mouth to stop me talking!
- He returned back upstairs, expecting one of us to follow him but soon returned when that did not happen
- He threw himself on the floor in front of us, lying there giggling
- He lifted his shirt up and flashed his tummy at Yorkshire Grandma, expecting a reaction
- He ruffled her hair and tried to grab her glasses off her face, several times
- Finally he tried to lift her dress up, to take a peek at her tummy!
The message was loud and clear : ‘stop talking to each other and play with me like you were before Mum came home’. Once Yorkshire Grandma had finished her cup of tea and some of her Belgian chocolates, she went home and Joshua calmed down and stopped his demanding behaviour. In fact he proceeded to have a cluster of seizures, within about 10 minutes of her leaving, sitting on the settee next to me. So rather than being ‘naughty’ and attention-seeking, as I had interpreted his behaviour, perhaps he was trying to say ‘look at me, something weird is happening to me, I feel funny and I need you’.
I know that this has happened a few times in the past : one time at school I recall, he refused to climb onto the mini bus. He can be really awkward , sturdy and obstinate when he wants to be and he was told off for being difficult. Once on the transport, he had almost immediately begun fitting and had to be removed and given his emergency medication . That has happened at home too, I have misinterpreted bad behaviour for him communicating an imminent seizure and of course then, I am racked with guilt afterwards if I have told him off.
If you have limited language at your disposal, you certainly do not have the words to tell someone that a seizure is on the way, then you can only communicate physically. So we all have to learn to be sensitive to Joshua’s physical attempts to communicate and to try not to judge his behaviour by our own standards. I cannot imagine how badly behaved I would be if I could not communicate either with the written or spoken word.