A life in the day (part 1)

A typical day with my son can tell you a lot about his life, and what autism is like in general.

B wakes up either singing or distressed. Unlike many autistic children, he sleeps well. He is not a morning person, though. There’s often lots of groaning and grouchiness when he first wakes up but the cause varies. It’s usually being tired, I guess. Oddly, he has never figured out that he could get out of bed and open his bedroom door if he wanted to. He has never ever done this. He always stays in bed and waits for one of us to go in. This made the transition from cot to bed easy, but makes me wonder what’s going on his mind. In fact, that could apply to much of B’s day. Sometimes, if there’s time, the boys will get into bed with us for a few cuddles and a bit of bouncing around. I like this. Yes, their toes and fingers are bloody freezing, yes I will be whacked in the head by a plastic toy and yes, they will tread on me in all the worst places (good job I’m done with having more children) but I wouldn’t swap these moments for anything. Well, maybe another twenty minutes sleep…

Breakfast. Like every meal of the day, B sits for, at best, five minutes. He will return to the table intermittently, but getting him to stay put during a whole meal is out of the question. This has led to many lost battles over the last few years. Occasionally, we decree that we will teach him to sit and eat all his meal but it never happens. Breakfast is usually toast and is mostly eaten on the move as he bounces from one activity to another, never staying focussed for more than a few moments. Once upon a time I would imagine family meals involving everyone sat together round the table. This does not happen.

After breakfast we get B dressed. His skills in dressing and undressing himself are very limited. He is still, at the age of four, wearing nappies. It’s a depressing thought, but I think we’re a long way off conquering this. At least we get the nappies provided for free. Each day we dress him and put socks on his feet, and each day the socks last about five minutes. One of B’s sensory needs seems to be having his bare feet on something. He can often be found pushing a CD around the floor with the sole of his foot. Our living room rug is curled up around the edges where he pushes it back with his toes (and later trips over). Yesterday he sat for quite a while at the table with his feet in a large plastic bag, kicking away. When sitting, his feet are almost always pressed against a nearby bookcase, windowsill or chair. I don’t know if you’d call it self-regulation or sensory fulfilment or what, but it is one of those things he has to do. It’s bad news for CDs (and their boxes, and books and plastic toys and anything else he can roll under foot around the floor) but it seems to bring him some satisfaction.

At the time of writing, we are on our Christmas holiday from work and school, so B’s usual routine has changed. The slower starts to the day suit him, but the unstructured day at home does not. We can eat breakfast and get dressed at our own pace, which is terrific, but thereafter B has been getting progressively agitated and unsettled. It’s my fault really for abandoning his visual timetable. On school days everything is literally spelt out for him on a laminated sheet. It seemed pointless to do that during the holiday. What would it say? Potter for a while, watch some tv, do whatever takes your fancy…

Clearly B cannot cope without structure. I’ve tried to fill the days with a few organised activities here and there and I’m fairly certain he’s not bored, but I guess I have not been thinking like an autistic child. B needs to know what’s happening and what’s going to happen. His brother can happily go through his day finding things to amuse himself, then doing something else when the mood takes him. I’m not sure B is able to think and act in this way.

Left to his own devices, most of B’s morning will involve a fairly narrow range of repetitive behaviours. Wikipedia’s entry on autism calls it ‘Ritualistic behaviour: an unvarying pattern of daily activities, resistance to change, refusal to be interrupted’ and ‘Restricted behaviour: limited in focus, interest or activity, such as a preoccupation with a single television programme, toy or game’. For B, this involves CDs and DVDs. He puts them on, he takes them off. Each will last about five to ten seconds and there is usually a preferred track number he will go to. B loves music but I don’t think this has anything to do with listening to music. B likes the ritual of putting them on and getting a satisfying response when they work. Is this a form of control? A need to be able to have a mastery of his environment and the things around him? In that sense it is perhaps a good thing, but like all good things it needs to be in moderation and with B, it most certainly is not.

Most of this play is solitary, although he has begun saying, ‘I want to play with you’. This is encouraging and, although the play is the usual ritualistic CD/DVD type of play, it gives me hope that he will increasingly realise the social aspects of play and attempt to access them. B also loves playing with his brother, who is usually very good with him. In fact, I don’t know how we’d cope without his six year old brother to amuse, excite and stimulate him. The play usually involves B copying and following his brother, which suits them both well. There is little imaginative play, but the two of them play well together and there’s great value for both of them in doing so.

Having said that, I think his brother would like more out of their relationship. When the boys’ four year old cousin visits, the restrictions of their relationship are made painfully clear. B’s brother and cousin play imaginative, involved games that use language and communication way beyond anything that could be expected of B. Big brother has to compromise his play (and indeed his life) a great deal to accommodate his brother.

I sometimes wonder how easy life is for B. The scream that starts the day suggests that his life is a struggle from the moment he wakes up. The constant need for self stimulation throughout the day suggest he is unsettled. You know that feeling when you’re anxious and you just can’t sit still? When you don’t know what to do with yourself? I think it must be like that for B. Imagine being unable to articulate your feelings and needs to an age appropriate level. Imagine if any number of aspects of your life and surroundings upset you.

Thankfully, B spends more time smiling than screaming. He is essentially a happy child and although this post highlights some of the difficulties of (part of) our day together, we usually get by without too many major problems. To paraphrase George Bush, we’re definitely more The Simpsons than The Waltons. I wouldn’t say we’re dysfunctional as such, but we do tend to function slightly differently as we navigate our way through each day. And we’ve only got to lunchtime!

Continued next week…

About these ads