Some struggle to believe that Ali is on the spectrum, it’s because I’ve parented him carefully and responsively to minimise the severity of his behaviour. But it takes constant management to keep him relaxed and ‘normal’, if I slip up and stop monitoring him and heading off potential problems he will quickly become anxious and disruptive, and that level of vigilance is exhausting. It is like living with Jekyll and Hyde, the child you see is not the child I live with, sometimes the destruction, growling, meltdowns, and even the heartbreaking fact that he would rather be on his own in his room the majority of the time,rather than be part of the family are heartbreaking. and hard to cope with.
while others can go to new places and explore new things. we can’t, we have to think where we are going, most times choosing to go to places he is familiar with just for the peace of mind that he will be settled and relaxed there.
Every time we leave the house we have to make sure that all the techy bits are charged up, we have made sure he is fed and have something with us, we have learned over the years that when he gets hungry he gets hangry, sometimes just something as simple as a biscuit can prevent a meltdown. sometimes it is not the autism we have to worry about, we have to consider are some places safe to take him because of his limited sight. yes, even then there is a look of disbelief on people when you try to explain that he is legally blind in one eye. with limited sight in the other eye. you get comments of “he must be ok he can use a tablet, or go on games” well actually yes he can play on them, that doesn’t mean his sight is perfect.. he falls down the stairs at least once a week, he falls off kerbs while we are out walking. he has no depth perception. he got past that age where you can say to him, hold my hand out walking. as Alex said to him the other week,we were at wildwood, and Ali had tripped for about the 5th time, “Walking is really not your thing is it?”
While we were at wildwood, I was sitting on the bench in the picnic area, while the boys were playing there was a child, about 7 I would say, trying to kick the chickens that were running around. he then proceeded to swear at his mother when she told him not to do it as it was making people look. (note she did not tell the child that what he was doing was actually cruel and wrong) he then proceeded to push another child over who was no older than three, as they walked past him, he bit his sibling in an argument over who sat where on the table. he then squirted water from his bottle at an elderly couple on the table next to him, laughing while doing so, The gentleman, in a soft voice asked the mother if she could please stop her child from soaking them, got the reply. “oh you will have to excuse him, he can’t help it, he is autistic.” and I felt like shouting. No, he is a brat. my child is autistic and not once has he ever been allowed to behave like that.