On Thursday night, I sat down to write and just couldn’t. After spending the last three months in a kind of haze where most of my conscious thought has been distracted by worry for Rusty and the rest focused purely on putting one foot in front of the other, the relief at reaching the Christmas holidays was immense. Proud does not even come close to describing how we have felt over the last few weeks because, to coin a phrase, the boy is smashing school life. Not only has he adapted to new routines and people, but he has also made huge progress in lots of aspects of day-to-day life and there are even some tentative friendships forming, with a couple of little girls who seem to particularly like the company of a quiet, mysterious type.
He has participated in everything from PE lessons to the recent nativity play (where he may or may not have been distracted by a sign which was badly blu-tacked to the wall) and has developed his own coping mechanisms, a lot of which centre on timings: Coat on at 8:16, Daddy’s car at 8:18, snack at 10:00, Daddy come back at 3:00 and so on… So far, it has been relatively easy to stick to his regimental structure but who knows what will happen when something interferes, definitely a case of crossing that bridge when we come to it.
Although the latest report states that his speech is currently at the level of a typical two-year-old, it is developing at a gallop and, while an awful lot is still very difficult to understand unless you are attuned to his pronunciation and style of discourse, he is making himself understood and that is priceless. His constant commentary on the world around him is very sweet and often amusing “man talking to lady… lady cleaning… very noisy bus” but can also send you slightly crazy when it’s your only source of conversation. When he is worried or excited, he repeats the same phrases over and over and over and over again and the vocalisation seems to help him process ideas and give him some ownership of the situation. At the opposite end of the developmental scale is his absolute love of numbers and growing interest in maths which is closer to the level expected of an eight-year-old. Talk about a walking, ‘talking’ stereotype!
But, more than anything else, he seems happy… ish… most of the time. It is not all fun and games, not surprisingly, and the bad days continue to be epically bad with tears, horrible silences and not being able to get through to him when he becomes fixated on something unreasonable; a frequent source of agitation being Baby A’s highchair which he immediately wants to sit in, whenever she is installed and becomes very upset “highchair now, highchair now, highchair now”
There are more subtle changes in his behaviour though, which make him more manageable; he is less flighty and more predictable in his reactions and he actually tells us what he wants rather than just lunging with no explanation or flopping on the floor when he does not want to do something. All these developments are small in themselves but add up to him simply blending in more and drawing less unwanted attention and, therefore, judgement.
What about home life then? Well, at home we plan our arrival and departure times and stick to them, come hell or high water. We go to the park, safe in the knowledge that he will want to play with a gate rather than a slide. We take unnecessary trips to the petrol station so that he can watch the numbers and most of all. Either Daddy D or I is present all the time, to provide interpreting services and most of all, we keep things simple, whilst all the time chattering away and teaching him how to be kind to his sister who, thankfully, seems to have absolutely zero autistic traits – it has been quite a strange experience to watch her neurotypical development!
And now, having successfully negotiated the term of darkness, we are faced with the prospect of CHRISTMAS. Holidays… food… visitors… decorations… presents… new smells and sounds… a break in routine… an assault on the senses… ooh err! After last Christmas was such an unmitigated disaster, to say we have been cautious in our planning this year would be an understatement. Seeing him involved in decorating a tree was really lovely and one of those things I thought may never happen but that is pretty much the extent of our festive efforts, apart from a few twinkly lights which appeal to his special interest. There has been no Santa visit – much as I would have loved a photo opportunity – and visitors are being kept to a minimum, with arrival times agreed well in advance.
Advent calendars have proved to be an unexpected source of comfort as they have created a routine (apart from having chocolate for breakfast!) and he can see that the days are building up to an event. He knows that “number 24, calendar finished… number 25, lots of presents” so we shall see how the actual day pans out.
Every so often, I am caught off-guard by the feeling that our family life is so different to what we might have expected and the festive season definitely adds to that. When we talk about Christmas it is with trepidation rather than anticipation, predicting confusion and over-stimulation instead of excitement. How we are going to balance this with his sister’s more conventional needs in years to come is still a mystery but Rusty is nothing if not surprising, how ironic is that?!
Right, let’s do this…
Merry Christmas one and all, see you on the other side!
Maybe he's just lazy 