A tiring week

March 03, 2012

A tiring week

At last it's the weekend! This week feels like it has gone on forever and been very tiring as a result. Both William and Finn have started to exhibit new and challenging behaviours this week, which coupled with trying to adjust to the new schedules of William's therapies, Finn's nursery sessions and the various clubs and groups we go to, has made for a very tired libby. While i wouldn't swap my twins for the world, i am a little concerned about the things which have happened this week:





William:
Although this is only the second week of William's new therapy schedule and i know it's still very early days i had hoped that he would be more settled with it than he was last week and would at least be looking at and trying to do some of the ABA tasks for himself. But he has varied from completely passive, sitting there like a rock while the therapist manipulates his hands to do the task for him, to having these sudden rages which come out of nowhere and involve him screaming, throwing himself around, head-banging and head-butting, swiping away everything put in front of him and scratching, clawing and digging his nails into the nearest person. William has never been aggressive to himself or to others before, so these new behaviours are quite frightening to watch and also very worrying for his future as i know that autistic children with self-harming and aggressive behaviours can be the most challenging to educate and to parent. i'm not saying that the ABA or the new therapy schedule has caused these behaviours, but i am worried that they may be making them worse in some way, so i'm going to keep monitoring it and see.

Having said that, the behaviours aren't just occuring when William is in therapy or when something is being demanded of him. A few times this week and a couple of times last week they came out of the blue when he was otherwise engaged in an activity he would normally enjoy or when he was being left to his own devices. So that makes me think it is more to do with him and his disabilities and conditions rather than the changes to his therapy timetable. Still, i can't help being a little disappointed that the ABA hasn't taken off yet in the way that i hoped and dreamed it might, especially as we are paying £125 a week for the therapy and have had to invest quite a bit of money in buying all the resources to set it up in the first place. And it takes up a significant part of the day, is a big commitment for us as a family and has necessitated sending Finn to nursery every morning, which also costs money and is something i otherwise wouldn't have done.

The other new therapy i have introduced, the 'floor-time' or 'intensive interaction', is also going fairly slowly, with William remaining fairly passive during it so far, difficult to engage and not showing any signs of realising that i am copying, joining in with and attempting to extend his movements and vocalisations during these times. Or maybe he is aware but just doesn't want to play along with the game. Still i'm going to persevere because i've heard great things about both these therapies and it gives me time to spend with William just letting him do what he wants to do, allowing him to set the pace and it's also a good chance to observe him and see what new things (if any) he is doing on a day-to-day basis.

The only other difficulty with this intensive therapy schedule we have drawn up is what to do if William's seizures are bad on a particular day. Do we press ahead with the therapies anyway (impossible if he is asleep recovering from a big seizure or a cluster of seizures), do we try to reschedule and juggle the therapies around (difficult when people are booked to come at specific times and can't change it) or do we drop some of the therapies for that day (frustrating, especially when we still have to pay for them)? It's not a question i have any answers for just yet.


Finn:
Finn has also been worrying me this week with some of the things he has been doing. Whilst he remains a bright, inquisitive, happy little chap, he has started doing the following:

- climbing - up till now Finn had only climbed out of his cot (which we promptly solved by moving him to a big-boy-bed) but now he is trying to climb everything. This week i have found him scaling the curtains, walking along the kitchen worktops, running across table tops, trying to get over the garden fence, halfway up the bookshelves, standing on top of the toilet (with the lid down) and attempting to get onto the windowsill in his bedroom. So far he hasn't hurt himself in these climbing escapades but i am worried that it will only be a matter of time, particularly as he doesn't seem to have any fear of heights at all and will run around as normal no matter how high up he is.

- jumping (aka throwing himself off of things) - Finn doesn't jump in the normal manner yet  but he has taken a liking to 'jump jump' as he calls it, which basically involves throwing himself off anything he can think off (the sofa, a chair, the stairs, his bed, the door step, the trampoline). Unfortunately he doesn't seem to want to land on his feet so any random part of his body hits the floor first and he doesn't check out the landing site before he 'jumps' so he quite often throws himself onto a hard surface littered with various hard toys. Again we've managed to avoid serious injury so far, though he is now covered in bruises, but i'm scared he's going to really hurt himself doing this.

- wedging himself in - this week Finn has also discovered the joys of attempting to wedge his body into small spaces. His favourites so far include under the sofa, in cupboards, in drawers, through the spaces in the bannisters, through railings in the park and into the gap between the garden shed and the fence. i'm not really sure what the thrill is, but Finn certainly seems impressed with this new game judging by the happy "glah!"ing which ensues if he manages to wedge himself into a new spot. The tighter the better it seems and half the time he has no plan of how to get himself out again, but that hasn't deterred our little adventurer one little bit, even when i've had to use butter to try to ease him out of a tricky spot.

- putting things in places they don't belong - Finn has always had an inclination for tipping things out and piling things up in huge heaps all over the house, but recently he has extended this activity to also include throwing objects down the toilet or into the sink or into the bin and posting things into slots such as the video recorder, DVD drive or printer (including a slice of toast and jam). Hence much mess, soggy items and sticky electrical devices and one mangled credit card which had to be cancelled and replaced.

- ripping/tearing things - another new behaviour which seemingly evolved out of nowhere, Finn has now taken to ripping up anything he is able to, such as the newspaper, letters which come through the door, shopping lists, memos stuck on the fridge, magazines, comics, pictures drawn by Poppy, toilet roll, the box of tissues and food packaging. Once ripped up he just scatters the pieces and wanders off, so i think it's the actual process of tearing that he is enjoying.

Nursery also report that he is quite a handful and has been indulging in several of these behaviours there, which concerns me and makes me feel guilty for the staff who have to look after him. They tell me they're quite used to boisterous children, but that Finn seems to have extra energy and ingenuity in thinking up new mischief to get into. Also he seems to be getting more and more impulsive and hyper, always on the go and not able to sit still for any length of time. i've been noticing that infact he never is still, even when he's sitting or laying down (which isn't often) there's always at least one part of his body constantly moving in a repetitive motion, almost like a tic but i think it's something he's doing deliberately to try to keep himself in that one place without needing to be rushing off somewhere. i'm thinking about investigating his diet to see if cutting out a particular food type might help with the hyperness, but to be honest he eats pretty well and doesn't have that much 'junk' containing artificial stuff anyway. Perhaps when he is a bit older i might take him to the doctor to get him assessed, but for now we'll just have to deal with our mini whirlwind the best we can. Good job he is so loveable with it!