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.

Etiquette!

One of my abiding memories is of my dear (but ill-informed) brother spreading a tarpaulin under my daughter's dining chair when we came to stay with him.  She was five, and whilst still learning to master her fine motor skills, she was fully conversant with the use of cutlery and as clean and tidy eater as any other five year old.  After that meal, the tarpaulin went away and was never seen again....

In my job as a learning support assistant, I am always baffled to discover the children in my charge are initially rarely able to sit and eat a school dinner without using fingers and getting in a right old mess.  Forks and spoons seem to be a hindrance, or completely alien.  This makes the child a potential target for ridicule when sat on a table with 7 other children who (generally!) are tucking in without ending up wearing their dinner.  As the mother of a child with Down's,  I always felt that any risk of my child being made fun of or singled out as different was to be avoided if at all possible - obviously allowances have to be made for abilities, but if there is the remotest chance your child can learn a skill along with everyone else, then it should be taught as early as possible.

When my daughter was tiny, obviously I fed her with a spoon as you would with any toddler.  But as soon as she was old enough to wield a spoon or fork, she was given the chance to feed herself - it didn't matter if she got in a mess to begin with, the first steps to independent eating had been taken.
Of course her food was cut up into manageable pieces, right up until adolescence when necessary - choking is still a hazard even now.  But she was taught to sit at a table and eat 'properly'.  Perhaps it helped that she spent her early years living in Greece where the culture is to go out to eat as a family along with other families and the children are expected to join in with the grown ups - no special chairs, kiddy meals or ball ponds in a taverna!  It was wonderful to be complimented on both my children's manners when out to eat.

I do not think it is impossible to teach the above at an early age - a little boy I worked with a while back had a lot of difficulties with just about everything in mainstream school, including lunchtimes.  But it didn't take very long at all to teach him to use the same cutlery as everyone else, and once he discovered how much more efficient that made him at getting the food into his mouth, he was off!  From being on a table on his own after everyone else had gone out to play, smearing yoghurt over himself and everything within reach, he went to being able to sit and eat impeccably along with his peers - to the point where he was getting the compliments too. And it only took a matter of  a few weeks.

It may be easier at home to spoonfeed your child, but it does become another 'learned helplessness'  - and this has to be considered particularly if your child is attending mainstream school.  There is not always the support available to help them fully during the lunchtime mayhem, and if your child can eat on their own it is a big advantage all round.  Also, think of the washing you save!

Good Advice is Always Welcome

I've been doing my job as an LSA for about 8 years now, as well as bringing up my own daughter who has Down's Syndrome, so most of the time I pretty much know what I am doing.  However, there are always opportunities to learn and I am always very grateful when they come along.

For the past few weeks the little boy I am looking after has been visited by a speech therapist from an independent company, and she has requested not only that I sit in on her sessions but join in too.  It's all very informal and child friendly and gets the best assessment out of the child whilst I can see her methods and get explanations of why she is doing what she is doing.  Last week the little lad was off school sick and I was unable to cancel her visit in time, so we sat together for the hour session and discussed strategies, child development, progress, and went over what we in the school have been doing so far this school year.  It was extremely useful and shed some insight on certain issues that I have been worried about and also validated the methods I have been using.

I learned a lot too, simple things that now sem blindingly obvious but hadn't occurred to me:

- If the child you are working with is one age but their cognitive age is considerably less, you have to lower your expectations to match the cognitive age.  It is no use getting upset when the child is working within a group of their peers and is completely unable to even comprehend the activity, let alone complete it.  Therefore, break activities down into simple steps, as simple as you need in order to get a result.  Don't worry about comparing them to the other children or whether it is worth doing group work - if nothing else, the child is experiencing working within a group, learning to take turns, learning to listen, all skills which are necessary in mainsteam schooling.  If the only thing the child has managed is to sit quietly, then praise this as next time they will remember that in this activity we sit quietly.

- Simplify tasks to have attainable goals.  We have been rehearsing a Xmas play with the whole of Reception year, and I have been trying to teach the little boy signs to go with the songs.  I was advised to keep it down to one sign per song line in order for him to learn something really well and not get flustered with too much to do when so much is going on.  Same applies to daily tasks - make sure there is something they can be praised for and that you are not asking too much from the child.  When you break what seems to be a pretty easy request into just how much the child has to process and remember, it is surprising to realise just how much has to go on in the brain.

-Don't be afraid to be unconventional in your approach - this is not something I have ever worried about, but it was nice to see someone else down on the floor doing silly voices with toys in order to keep the child focussed.  You may look daft, but it works.

-When working on one specific target, don't concentrate on one resource i.e. we have been teaching the little boy two word phrases such as 'cat eating' using photographs.  This should be backed up with toys, people, whatever you can find throughout the day so that these phrases are not just associated to the particular photos.

-Whilst it gets your point across when you stress 'b-b-b-ball', make sure you are not teaching the child that the word for ball is 'b-b-b-ball'! Children take adults literally at the best of times, so you have to be extra careful when working with children with special needs who cannot differentiate whether or not you are just showing them how to say the first sound of a word.  (Oops, I am very guilty of this one - good job this was pointed out before he learns a stammer!)

The above are just a few of the very useful tips I have picked up lately - hopefully there will be many more before the visits come to an end.

Chew Toys!

You learn something every day - the last little boy I worked with used to grind his teeth really badly throughout the day.  It was so loud, you could hear it across the room and it must have been playing havoc with his teeth. The only way I could stop it temporarily was to squeeze his cheeks gently between my fingers - but you can't keep doing that all day!  My current little boy when tired or listening on the carpet makes a loud bull-froggy noise from the back of his mouth, which while it is harming no-one can be very distracting when the whole class is supposed to be listening to the teacher.  Also, there is no way I can prevent him from making this noise, short of sticking my fingers in his mouth - which is NOT going to happen!

His mum, however, went on the case and came up with a possible solution,  Apparently, you can buy human chew toys!  See them for sale here. I guess that is no different to a teething ring and if it has the desired result, then it is a wonderful tool.  So there is one on the way and we shall see what happens - watch this space!

Starting to Read

The child I am working with at the moment is the fourth one that I will  teach to begin to read.  In the school where I work, the system for the other children is Synthetic Phonics which is good to know but will not go very far towards helping a very young child with Down's to read just yet.  We usually continue including the child with the others in Phonics groups, but work harder on whole word recognition in these early stages.

The way I do this is to make a small 'All About Me' book.  It's just a plain exercise book and I type up a few simple sentences to illustrate photographs from home.  For instance,the first pages will consist of pictures of the child and their immediate family, with the words 'I can see Mum.  Hello Mum. This is my Mum' etc. used underneath.  As the first few words taught to the rest of the class are also Mum, Dad, I, can, see, the, cat, dog, it works out well.  For children who also have speech difficulties, this helps a great deal with stock phrases being learnt that can be used in everyday life.

The book is then used on a daily basis for about ten minutes at a time - more if the child is enthusiastic - initially just read the text while pointing at each word as you say it.  Gradually, as these words become more and more familiar, you get the child to read along with you and eventually to read independently.  Along the way, you introduce cut out or magnetic matching words and show the child how to find and match each word while saying it out loud.  Throughout your day, if you come across a printed word elsewhere that matches what he is learning, point it out and read it - it is quite important to avoid the pitfall of the child thinking that these words only have meaning when read in the All About Me book.  As the vocabulary widens, it helps to have labels on such objects such as door, window, chair, table etc.

I will also be introducing flashcards of the first few words and slowly adding  new words such as names of classmates, the words that will be used on future pages of the book, and selections from the 100 most common word list held in class.  The flashcards are never used in a sit-down-read-this kind of way - you can invent all kinds of games to make this more interesting - labelling passing children, having a few words on the desk and getting the child to find one that matches an object, or even, if they are not impressed with this activity, getting them to put each word away as you read it, the reward being the end of the activity.  I am currently using the child's snack as a fun incentive for counting and word finding - he brings in yoghurt covered raisins which can be used in hundreds of ways to help the learning process as well as being a good basis for some conversation and signing practice - ' I want MORE!' 'How many more, 1,2,3,4, or 5?' 
Funny how the answer is invariably 'Five!'