Sunday, 6 February 2011


Or Obsessive Compulsive Disorder...perhaps a rather strong term for it, but if you live with someone with Down's Syndrome, you'll know all about it!  Things just have to be done in a certain way, at the right times and on the right days.  Should the sequence be broken, it can be very upsetting for the person with Down's and cause all sorts of problems for the people around them.

Let me give you an example.  My daughter no longer needs help in getting changed for bed at night and goes up quite happily on her own to do so.  The trouble is, her bedtime routine has now become so long and involved, it can take up to an hour.  This is because she simply has to:
a) arrange all her toys in the correct places for the night.  She has about fifty soft toys on her bed, all have their own place in the pecking order of affection.  There are about three that get to sleep in the bed with her - these are the number ones.  Next down the list are the toys that get to sleep on the spare bed together, with a pillow and one of her sweatshirts for a blanket.  Then there are the ones that sleep under her bed together, also arranged carefully on a jumper with a sweatshirt blanket.  Finally, there are the ones she isn't that fond of but refuses to get rid of who are jammed all along the wall on the edge of the bed.

b) There are the fairy lights and lava lamps to switch on.

c) She has to carefully fold her clothes up ready for the following day or pick out clean ones.  She wears clothes in 2 day cycles, despite my entreaties to change her clothes every day.  I only win if food has been spilt and she can recognise that to wear a mucky jumper the next day would not be nice.

d) The bathroom routine - washing hands and face, cleaning teeth, using mouthwash, putting on body spray, and going to the toilet.

e) Arranging the necessities she might need in the night around her pillow - watch, torch, water bottle, tissue box and occasionally a plastic gun if Dr.Who has been particularly scary that day.

I admit this is the worst collection of obsessive routines she has - others throughout the day can be circumnavigated if necessary with only a few glares and sulks on her part.  The problem is where to draw the line between learning good routines that will serve her all her life when I am not there to remind her to clean her teeth etc., and an obsession that slowly takes up a huge chunk of the day.  I don't want to be the heavy and treat her like a child, but on the other hand she has to realise just how much time should be spent on this kind of activity.  Luckily she can be reasoned with up to a certain point and together with the threat of a serious toy cull, we have cut the time of getting ready for bed to about half an hour.

This tendency to OCD was worse when she was younger and less able to understand adult reasoning.  Mealtimes were always a big bone of contention - should we be out for the day or on holiday, or even decide on the spur of the moment to eat out, the change could cause major mood swings.  It used to be that if she hadn't eaten her lunch by 12 o'clock, we would have the sulks, the sudden inability to walk faster than a snail, or even tears.  The way round this has been to explain at the beginning of the day that things would be different and that this was a good and exciting thing once in a while, giving her as much of a plan for the day as is possible.  The other trick is to carry a spare biscuit or piece of fruit in my bag for slipping to her at the moment her face begins to fall, which usually satisfies the OCD until lunch is eaten.  Missing a favourite TV programme would also cause a ruckus - thank goodness now for 'catch up' tv.  The plus point here is that she is very good at telling the time...

I don't think it is Obsessive Compulsive Disorder in the true sense of the phrase, but more a way of keeping things familiar and safe.  It's tough to cope sometimes when you don't understand everything around you and your fingers don't move as fast as other people's. So a tactic that works is to have set routines that you know you can do that get you successfully through the day clean, fed and happy - it's what we all do really.  It can be frustrating for the rest of the family, but a little understanding goes a very long way. As a parent (and sometimes in my job too) I just try to keep an eye out for when a routine starts heading for an obsession and then take steps to head it off before it becomes a problem.

There is one routine I shan't be trying to change however - she does a brilliant job of tidying up the sitting room while I am walking the dog in the mornings!

No comments:

Post a Comment