Out of Context

Yesterday my  boy  had his first annual review at school, even though he’s only been there since September.  We discussed Pwdin’s annual targets and the progress he’s making towards them. The first of those targets is to consistently respond to his name. Being totally honest, he hasn’t come along much in that department. He might turn to his name being called as he would to any other sound that takes him by surprise. The second target is to sit in a chair and it’s in this in which he has made great strides.

We were shown videos of Pwd at the beginning of the school year strapped in his buggy so that he would sit and feed. We saw how he held a cheesy wotsit in a fist poking it directly into the centre of his mouth. The next movie starring our little leading man showed him sitting next to a classroom assistant, on a chair – no straps just a vibrating cushion to keep him focussed – feeding himself a piece of toast using a far more delicate pincer grip. We had noticed these changes in the boy but to see a “before and after” really made me appreciate how far he’d come. Of course I’m terribly proud of my toast munching munchkin.

We also discussed areas where we thought our little Pwdin has not made progress. His communication is still entirely physical: he’ll take you by the hand and lead you to what he wants for example. We’ve also become aware that his repetitive behaviour has increased over recent months. The laps are constant except when he’s crawling and climbing all over his Mammy. Like parents of all kinds of children the world over we are coming to realise that the school child and the at home child can be very different creatures indeed!

As he makes progress at school, he seems to be regressing to old habits at home (except that he does willingly sit at the dining table these days). He is obsessed with me – my boobs in particular. If I am in the house he has to be pretty much right on top of me. He’ll be on my lap and try to sit on top of my head. When at home alone I end up carrying him around the house as he throws enormous tantrums if I try to move from where Pwd has specified that I should be. Even if he’s hungry he will scream and cry if I try to get up to get him a milk or food. It’s impossible to play other than tickling or rough and tumble games as he will not tolerate physical distance from eachother. If I go out and leave him with Daddy…he’s perfectly fine!

I’ve mentioned before that every week we go to the WARC and Pwdin  gets a good old fashoined run around and play with researchers. I get to sit and watch him behind a two-way mirror. He may well be hanging off my clothes all day at home but when he gets to that “play room” and I go through the door he doesn’t look behind him. He happily trots away with his truly marvellous child minders twice a week and has settled superbly well at school. Even when, one day I visited his class after a multi-disciplinary team meeting, when I left he didn’t seek me out and he carried on his day in his usual fine spirits. He’s certainly not insecure in any sense I can relate to so why this frantic closeness when I’m around? Affection is one thing but this contant clinging is actually a hinderance to our closeness as Pwd will gouge out bits of my skin, hang off my hair and clothes or try to pull me around by them.

Despite this, Pwd will not take food from me unless we are out of the house. He won’t let me dress or change him without a wrestling match. He even missed school a week ago as, when the door bell rang and his bus escort was outside, Pwd was in just his nappy having made himself sick with a tantrum and I was bleeding from the nose where he’d kicked me. Dad gets some of these shinnanigans but nothing to this extent. Daddy is also allowed to give Pwd food in the house. He is also allowed to play with Pwd but he isn’t allowed to give Mammy cwtches and kisses without Pwd butting in nor is Dad allowed to cwtch Pwd (unless he’s not properly awake) or even be in the bedroom when Pwd decides he’s had enough sleep and wants to run laps of his room for a few hours. No, Mammy has to be there. No ifs or buts.

Ultimately, for my little Pwdin, people have a context. The things they do for him

have to be done within a context he understands and that he is comfortable with. It’s been said that I put too much of a rosy tint on life with an autistic tot but I’m the first to admit that it can be lonely, frustrating and exhausting.  This last fornight or so I’ve been at my wits end and in floods of desperate tears. Not because he has these problems or behaves in these ways but because the tantrums are clearly a manifestation of some kind of distress that he cannot communicate and I feel his frustration; because, too, I am not always as patient as I should be and at times feel my head throbbing and my heart pounding when I’ve done all that I think Pwd needs and wants me to do but with no let up in his distress. There are angry tears: angry at my own anger that, at times Pwd won’t let me help him. Mainly though I get upset  when I just can’t figure him out  – this boy I know so well that I can tell by how he’s scratching an ear if he’s tired, concentrating or just got an itchy. I don’t cry about what he lacks or because he’s different but for what I don’t know how to give him.