Toilet Tip

It's been quite a slog trying to get the little boy I work with to be toilet trained.  We're all working hard, both home and school but we just can't seem to get there yet - it's very hit and miss...and that can be taken more ways than one!

After a disastrous week of wall to wall wee and poo (that's what it felt like at least!) I consulted our SENCO and asked if she had any ideas.  She suggested a little set of three cards on a velcro background, the first showing the sign for toilet, the second showing a successful wee or poo in the loo (I had to be very careful while searching the internet for that image - make sure you look under SEN Resources then you should get to where you need to be) and the third picture to be of a reward you KNOW the child really wants.  I have made up several reward cards but the only two I am using at the moment are either a toy car or yoghurt covered raisins.

When you take the child to the toilet, you show him the set of cards, explain that he is going to the toilet and if he achieves the number two card (I just can't escape double entendres in this post!) then he will get the reward.  You have to be very clear and use simple, plain language to explain this, backing it up with Makaton and pointing to the pictures.  If necessary, take the cards with you to the toilet and repeat the aim while the child is sitting on the loo.

If they perform, great celebrations and take them back to get their reward, showing them the card once again and saying 'wow, you went to the toilet, you did a wee/poo, so you get this!'

If, however, they do nothing, then I am afraid it is a sad face and no reward, again explaining clearly 'I'm sorry, you went to the toilet but you didn't do anything, so you don't get this'.  Obviously be sensible, you can't expect the poor child to poo on command but you can tell if maybe they are preparing something by the whiffy wafts and the fidgeting!  You know the child you are looking after well and should be aware of the times they are likely to need to relieve themselves.

Example:  Last week for some reason, my little lad was withholding wee - usually he goes hourly, sometimes more frequently but this was getting towards lunchtime and it was very unusual.  I used the card system to no avail, explaining each time what was happening.  However, after a fourth unsuccesful attempt, we returned to the desk and he started gesticulating towards his raisins and asking to 'eat'.  So out came the cards and I explained that as he hadn't done anything in the loo, he wasn't getting his reward.  Immediately, up he got and took himself off to the toilet for the first time ever, had a much needed wee and came back to great joy and all the raisins he could eat - result!

You have to be consistent with this - no good giving the reward item half an hour later for something else.  You also have to be prepared for tantrums when they don't get what they want.  But it does seem to work, and hopefully once the child has got the idea of when and where he should relieve himself, you can dispense with the cards once and for all.

Summer Holidays

When my daughter was still at school, the school holidays were a bit of a problem.  Mainly, particularly during the summer holidays, you had the change in routine.  Or should I say, change from routine to no routine at all.  I know many children with special needs find this very difficult and react in various ways. 

My daughter's reaction was to create her own routine, which wasn't necessarily a good thing as it seemed to involve the slavish following of a pattern of things that must be done at set times, plus an awful lot of staying in her room.  Now, as a busy mum who also works from home when not working in a school, initially this seemed like a good solution with her being able to occupy herself. However, after a week or so it used to become apparent that my daughter was becoming more and more isolated, introverted and less inclined to speak to the rest of us.  Not so good!  So I had to create a bit of a routine at home whereby she at least got out to the shops and for a dog walk every day, which luckily she was happy to do.  I couldn't sign her up for any play schemes when she was younger as she absolutely hated them.  As a result, the holidays weren't much of a holiday for me!

However, since she became an adult and joined adult activities, the school holidays no longer apply and the activities continue throughout the year.  At first I was a bit concerned that she would resent the fact that she had to carry on going somewhere whilst I stayed at home, but in actual fact this new routine has proved a Godsend.  Last year she was out of the house for two days a week during the break, this year it is now 3 days a week.  It has worked out splendidly - she gets to see her friends, have something interesting to do, gets away from me and my nagging (!) and I get to have three days in which to catch up with housework, run errands and get on with my arts and crafts work without interruption.  Which means we are both a lot more interesting to each other for the remainder of the week!

So I do recommend getting a holiday routine of activities in place if you can - it benefits everyone.

Things I've Learned Recently....

One thing I already knew was that each child I work with is very, very different.  Since September I have had a new little charge, a lively four year old - and I mean lively!  Whilst the core basics of teaching a child with Down's Syndrone in infant school remain the same, tactics and strategies change and evolve with each child, all depending on what works and what doesn't.

This little boy has a lot of difficulty with his speech, so a good deal of the day is spent on activities to promote and improve his oral skills and understanding, as without speech the rest of the school curriculum becomes very hard to cover indeed.  We try not to make these into  formal 'work' sessions - the first thing I have learnt is to avoid the 'W' word as telling him we are going to do some work incurs a refusal to cooperate!  Instead, we try to make activities fun, and if it descends into silliness on both our parts that is OK as long as he is making sounds and attempting to communicate.

I have learnt that many of the set exercises for development of the mouth and tongue muscles are very, very boring to a four year old and some are totally incomprehensible.  If I was him, I wouldn't want to do them either.  So instead of slogging our way through a dire story about Mr. Tongue with unfathomable illustrations, we get out the yoghurty raisins and have a laugh getting the little boy to try and catch the raisin (his very favourite snack) with his tongue - on his top lip, on his chin, and either cheek.  We pretend to lick ice lollies and waggle our tongues at each other making silly noises.  We sing lots of songs that involve 'lalalala' and 'bababa' etc., even if they are pure nonsense.  We make sound effects for just about everything; we play with all sorts of blowing toys - bubbles, floating ball toys, making feathers float, etc.

I have learnt that if I am having problems with his concentration and behaviour and a firm telling off has not worked, the best thing to do is totally ignore him.  He cannot bear not to be the centre of my attention and either turning his chair or mine away and refusing to pay him any mind until he settles down and cooperates works like a charm.  The trick is no eye contact, no talking other than to say 'I don't want to play with you until you are nice/kind/good'.  Usually (I'm not saying it works every time - we all have our bad days!) after a few minutes of this, he is ready to join in with the activity once again in a sensible manner.

I have learnt that when all else fails during an activity, singing beings it back from the brink.  We sing as we walk down the corridor, we sing as we wash and dry our hands, we sing as we use a pencil  - you get the idea!  My main difficulty with this particular little boy is getting him to show an interest in mark making - his fine motor skills are still poor, so to him there is not much fun in aimless uncontrolled scribbling on paper.  It is a bit of a vicious circle, as unless he uses these skills, they won't improve as fast.  However, Ihave found that if I draw a bus with no wheels and sing a rousing chorus of 'The Wheels on the Bus', he will then start to fill in the wheels on the 'round and round' part of the song - this can then be used in other writing tasks, just by changing the words to cover the subject and also varying round and round to up and down, side to side, etc.

After many months of cajoling, waiting, running of taps, singing, the best way of approaching toilet training (for this little boy - I'm not saying it will work for a different child) has been the matter-of-fact this-is-what-is going-to-happen method.  I have had major success by having set times when I take him to the toilet (twice in a school morning)  and we walk straight there, put him on the loo and say in a firm voice while backing it up with Makaton signing 'It is time to do a wee in the toilet now.'  Nothing else, no explaining, no cajoling, just repeating that one sentence, several times if necessary.  Occasionally I will add 'and then we can go back and play' but I feel that is adding too many words - very small children tend to hear the last word of an instruction and act on that rather than taking in the whole sentence.  Then - and this may not be easy for some LSA's - you have to be vigilant and as soon as the first droplets of urine fall, give him a round of applause and lots of praise.  It has to be while the child is actually going to the toilet - no use looking down the loo afterwards and cheering, as far as the child is concerned you are then just cheering a bowl of water. Since Easter, this way of dealing with the toilet has worked very well and he will usually 'perform' within the first couple of minutes - no more sitting there for twenty minutes at a time!  It is now a rare occasion when I have to change his nappy.  However, we have yet to crack the problem of getting him to sign when he needs a 'poo' - unfortunately, this tends to occur after lunch when my job share takes over - lucky for me!

I have learnt that you have to find the key to unlock a child's learning - by this I mean something that spurs them on to join in and work.  We have found that the yoghurt raisins work like a charm - they can be used for tongue exercises, counting tasks, even as rewards for getting reading right.  Obviously they have to be rationed - not a good idea to get through packets of the things in the course of one day!  But between us, my job share and I use one packet a day - which would have been his snack anayway as this child is not keen on fruit - and there are enough there to be used for many different activities.  Other keys are family photos - words make more sense if they apply to a recogniseable family member rather than some obscure drawing in a book.  Toys are also a great tool - we spend a lot of time chatting about Postman Pat and what he is doing or describing what the wind-up chicken is up to today!

I have learnt to keep up a constant narration of what we are up to, using simple phrases.  We have a gem of a speech therapist, and I have learned so much from her.  It is quite hard to actually narrate without using questioning - I'm still trying to get the hang of it.  But it works in that you are patterning sentence formation and using relevant vocabulary which hopefully one day will be used back at you.

I have learnt when to give up.  We all have our off days, when we are tired or not feelling too well and we know that trying to get a lot of work done on those days is nigh on impossible.  There is no point in forcing the issue  - we are able to tell other people how we are feeling and they will understand and give us a break.  Imagine how it must feel if you are really tired because you have to work twice as hard to keep up as everyone else, but you are unable to tell anyone around you.  If they continued to make you work when all you want to do is have a lie down and rest, you'd get angry and frustrated and non-cooperative too.  Many times the 'stubborness' and 'bad behaviour' witnessed in children and adults with Down's is due to sheer frustration at not being able to get their meaning across to the adults trying to make them do something that they either don't understand or really don't feel like doing. As an LSA you have to be able to recognise when the child is not 'naughty' but is genuinely unable to concentrate or do what you are asking of them.  At these times there is nothing wrong with stopping 'work' and either letting the child just play or even sit quietly in your lap while you look at a book or sing.  Over the years we see the pattern - the last couple of weeks of each half term are always tricky.  All of the children in infant school are tired by then, particularly if there has been a lot going on such as the run up to Christmas.  The world will not come to an end if you give the child a day off - you can still accomplish an awful lot through play.

I have learned to 'chill out' - all children learn at their own pace, it cannot be hurried only helped along.  The knack is to see just what has been achieved over the past months and not worry about the things that have not.  You will probably be surprised at just how much has been mastered when you sit down and add it all up.  There is no point in comparing one child's progress with another's, each one is an individual with their own strengths.

I have also learned that to volunteer to get in the swimming pool at my age with a lively four year old who doesn't seem to be able to stay upright and keep his head out of the water was possibly not the best of ideas...

Sticks and Stones......

As the old adage says, 'Sticks and stones may break my bones, but words will never hurt me'.  That may be true when you are four, but the older you get the more you'd prefer someone to throw a stick at you than say what they are going to say.

In my job as a one-to-one special needs assistant to very young children with Down's Syndrome, I see their parents going through what I have been through over the years and while I can do nothing to prevent it, I can at least offer a little moral support.

One of the most painful things to deal with when my daughter was growing up was the results of professional assessments.  If you are a parent of any child with a disability, you will be familiar with that sinking feeling as you sit there in someone's office and watch your child either fail some task that is deemed to measure their progress or just not co-operate as they don't know this person from Adam.
This professional then tramples with their hobnail boots over any small glimmers of hope you have in your heart by telling you that your child is still at the toddler stage.  Not so bad when your child is still in infant school, pretty devastating when they are approaching adolescence.

Now I recognise and accept that these assessments have to be performed in order to get an idea of progress and to plan how to help the child move on in their physical or mental development.  I do wonder however, if the professional giving out the verdict ever considers the feelings of the parent.  I'm not saying the information should not be passed on, just that it should be passed on sensitively.
Are they aware that the parent is generally already trying their hardest to help their child meet developmental milestones 'on time' and that the slightest knock to their confidence can be incredibly hard to deal with?  Or perhaps the parents are not dealing with their situation well due to personal circumstances, family pressure or even denial, and this information could tip them over the edge?

In my case, I am a very 'stroppy' person - tell me something can't be done and I will move heaven and earth to prove you wrong if I don't agree with you.  After my daughter's birth, professionals told me she would never amount to anything, remain a vegetable and destroy my life.  Sensitively put.  So, 24 years later, now that she has been through mainstream school, attended college and is living a fulfilling life as well as bringing me great joy, I can mentally stick my fingers up at those people and know in my heart they were wrong.

But what if you are not so able to cope with something like this?  Is it ever considered?

The same goes for giving out false hope - things like 'cures', remedies, putting even more effort into trying to jam information into your child's head.  Sometimes that can be just as demoralising, especially when what you try and pin your hopes on fails miserably. 

The above is something I feel strongly about but do not really have any answers to.  As the parent of a child with special needs you have to develop a very thick skin and learn to take everything you are told by people outside of your situation with a hefty pinch of salt.  After all, who knows your child better than you yourself?  Each child who has Down's Syndrome is very different from the other - the tendency for some professionals to generalise and lump them all into the same sterotype is high.  There is the dreaded phrase 'They do this....' They?  Who?  Each child with Down's Syndrome has their own personality, talents and rate of development, just the same as any other 'normal' child. It's something everyone has to learn to accept, including the professionals.