Harsh

I've read a couple of things on blogs over the past few weeks that have bothered me intensely as being grossly unfair. I won't go into specifics, but basically it's been people who have no idea what they are talking about criticising parents of special needs children.

Years ago when I was studying to become a SENCO (Special Educational Needs Coordinator) one small paragraph in the blurb we were given to read stood out for me as crucially important.  It was this:

'Never judge the parents of a child with special needs'

This was advice to those working with SEN children and I felt it should be put on a plaque somewhere prominent in every school.  As a parent of a child with Down's syndrome, I have experienced many thoughtless comments by members of staff in various schools and have had to mostly put them down to the other person having no idea what I go through on a daily basis and try to ignore them.  Sometimes I have protested - how about when I was told not to send apples in her lunchbox as her method of eating them was embarrassing? (Now seriously, would a teacher say that to the parents of a 'normal' child? Ever?)

The point is, unless you have intimate knowledge of what those parents lives are like when dealing with their child, you have no right to make assumptions and put in your twopenny-worth.  It's hard to remember this - we are all guilty of it with everyone we meet, it's a human trait. But when thinking about someone who cares 24/7, seven days a week, 365 days a year for their child with special needs, it pays to have a grain of empathy.  If you see that mum looking frazzled and angry, dragging a surly child into school ten minutes late with breakfast all down it's front and shirt untucked, do you immediately think what a bad parent she is? Or does it cross your mind that she might have had very little sleep that night, had to deal with one of 'those' mornings where her child is on a 'go slow' (if you have a child with Down's, you'll know what I'm talking about!) and it has been impossible to get them dressed, fed, washed and out of the door in time for school without major meltdowns, as well as perhaps having siblings to get ready too. 

There are other times when perhaps they are being a 'bad parent' but are at the same time going through very hard times emotionally or financially and just aren't coping. Then they don't need your judgement, they need your help.

A phrase I read quoted on a blog, written by a reporter in a newspaper, was that these parents 'wear their child's disability like a thorny crown' meaning that we use it to gain sympathy and to achieve what we want. Nothing could be further from the truth.  The hard fact is, your child's disability becomes a major part of your life and something that cannot and should not be ignored or not talked about just in case it embarrasses someone else.  Other parents complain about their kids keeping bad company or being rude and untidy at home and we are sympathetic; however, if the parents of a special needs child have a much needed moan about how many times they had to clean up excrement that day or about the huge tantrum thrown in the shopping centre because the child is scared of crowds, there is an uncomfortable silence. We are not looking for martyrdom, just someone to say 'Wow, that must have been hard for you, how are you doing?'  Most of the time we cope and can live our lives with a smile on our faces, but it must be remembered that sometimes it is not easy and we are allowed to have bad days.  We don't do it on purpose to make the rest of the population feel uncomfortable, it's just the way it is and we are doing the best we can under the circumstances.  Giving birth to a child with special needs is not a life choice, it is something that just happens - we all deal with it in our own way, the best way we can, and if it doesn't measure up to what you think is the best way, don't make harsh judgements, try offering a little help and understanding instead.

OCD

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!

The Importance of Continuity

This may seem like stating the obvious, but if you want your child to learn anything well there has to be some form of continuity.  Repetition and lots of it is the key to entrenching something into the mind of any child, but particularly one with Down's Syndrome. 

In the past it has been quite a challenge to ensure that the child I am teaching manages to hold on to what they have learned throughout the school holidays.  I have mentioned on here before all the little tasks that can be done in order to keep up the work without the child realising they are still working even though at home.

At the moment I am teaching a little boy who needs a great deal of repetition, but unfortunately has not yet made more than a couple of full weeks at school in the time I have been with him, due to various reasons.  This means that whenever we have a couple of really good days of working hard, making some real progress with signing and attempts at speech, after a break at home for a few days, 90% of that knowledge has faded as the routine has been broken and it has not been reinforced at home.  I know from personal experience with my daughter that it takes quite a while to get a piece of learning in, but once it's in there, it's there for life  - but this cannot be accomplished without work both at home and school in conjunction with each other.

In order for steady progress and visible results to be seen, there has to be some cooperation between parents and school - it cannot be expected for the school to produce a miracle during the few hours they have the child if their work is not supported at home for the other 18 hours of each day...and weekends...and holidays!  No-one said it would be easy!