Today is New Year’s Eve, when we traditionally look back over 2018 and review what we have done but look forward to 2019, with hope. My wish for 2019 is that we successfully get through Joshua’s Transition from a child to an adult of 18. That we are smoothly transferred into new respite provision and that our new epilepsy nurse and consultant are helpful and that they have time to learn to get to know both Joshua and us as a family. It means that we are on the brink of an even bigger change, when in 2020 he has to leave school and transfer into some kind of suitable daycare alternative too, but I definitely do not have to think about that too much yet. So the next year and the one after, threaten to be a challenge more for me, who dislikes change, than for Joshua, who has shown himself to be pretty adaptable over the years. He has taken new schools and teaching assistants in his stride, as for him, it seems that once your are out of sight, then you are out of mind. I do not think that Joshua has the capacity to reminisce, whereas I spend a lot of time looking backwards – probably more than I should, as demonstrated by my love of watching videos from 2001 and 2002 just this week.
2018 for me is a year that Joshua has expressed his personality and he has refused to be passive any more. Joshua has developed behaviour that we have only ever seen once before in his life, and that was when he was younger and had an aggressive reaction to an anti-epileptic drug. But this year Joshua has kicked doors and even ankles, in his desire to communicate. He has, unusually, spent very little time asleep during the day, with waking up 7ish and rarely needing to rest on the giant beanbag set aside for him at school. He has been too busy to sleep, he has had chaos to wreak. While last year, Joshua amazed us with some of the words that he was using and imitating, in 2018 he has been less vocal and definitely more physical I would say.
This year Joshua has suddenly taken an interest in hoovering and sweeping up and he has begun to pass me things to be helpful, such as his yogurt pot at bedtime or his splints when he is getting dressed in the morning,so he is demonstrating that he understands more about his routine finally, about what comes next. But he has also been much more restless, his attention span seems to have reduced for favourite pastimes, perhaps after 13 years he has finally got bored of the Live 8 show and Madagascar, as they do not mesmorise him like they once did.
Who knows what will come next in terms of Joshua’s skills or what he chooses to show in terms of his personality, as he likes to keep surprising us. Whether it is good or bad, I have no doubt that Joshua will continue to keep us on our toes. There is never a dull, predictable day when Joshua is your son.