Thursday, 15 December 2011


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!

Wednesday, 30 November 2011

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.

Wednesday, 12 October 2011

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!

Saturday, 8 October 2011

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!'

Toilet Doll - Update

Not that there is much to update actually - the doll works fine, but the child it is aimed at was not impressed!  He likes to see the doll pee into a toy potty on the table, away from the actual toilets, that he finds great fun.  However, take it to the loo to use as a demonstration of what is required, that's another matter! Several times I have had ro rescue the 'mini-me' from nearly being thrown down the toilet in contempt.

We will persevere - I don't think it's anything to do with the toy or behaviour, just that the child isn't quite ready yet.  In the meantime, I've sent the doll home with him for the weekend to see if it has any effect when used in familiar surroundings.  Let's hope he doesn't come back to me tomorrow damp.....

Sunday, 18 September 2011

Necessity is the Mother of Invention

Now I know that nappy changing is part of my job at the moment, but I have to admit I am not keen on it at all.  Not because of the wee/poo side of it, although that plays a part, but I really don't feel comfortable being so intimate with someone else's child.  Also, as we are in an infant school, we don't have the proper facilities really and kneeling of the floor of the boys' toilets is not fun! 

So in an effort to speed the training process along a little, I came up with the idea of a very visual aid.  Last year I used a teddy with a small bottle of water held behind him in order to simulate the toy having a wee in the loo, but I felt this might not be the way to go with my current charge.  So I whizzed up a little 'mini-me' out of felt.
It has a piece of plastic tubing which comes out of the back of the neck into a small squeezy container that can be filled with water. (OK, I admit it, I pinched this off a free squirty bow-tie toy!).  The other end of the tube is sewn into the body of the doll and comes out....well, you can guess where!  Warning, the next picture contains a felt winkie......
So, the trousers can be pulled down, then when the doll sits on the potty, his appendage points directly downwards into the bowl. 
You then squeeze the plastic bulb, thus making the doll pee.
Then the idea is to praise the doll and hopefully the child will then get the idea and learn the process in real life....that's the idea.  I realise there is great potential for this to go horribly, horribly wrong and the doll to end up down the loo covered in urine, but it's worth a try.  I'll let you know how I get on!

Monday, 12 September 2011

Back to Basics

This September I am back working in Reception class for the first time in 4 years, with a new little boy to get to know.  This year it has been possible to prepare very thoroughly as the school has had a major change in the number of classrooms and their layout, which has meant starting completely from scratch.  So the teacher and I have had many discussions on how to arrange a little learning area for the new child, where to put it and how to stock it.  It's been fantastic for the first time to be so completely organised rather than jammed into the nearest available corner.  There is a work table, a noticeboard, my own set of drawers for various equipment and resources, even storage for my reference material.

However, I fear this learning area is going to remain unused for a while - I had forgotten the mayhem of those first weeks with a bunch of four year olds who have to have time to adjust to being in school and for us staff to get to know them and their foibles!  It's been a good start to the school year, with what seems to be a calm and well adjusted class of children but to be honest, this week each day is just a matter of them charging around exploring their new environment and playing with just about everything they see.   Combine that with teaching my new child all about the toilet and trying to get a routine established to avoid any further dampness(!), the hours fly by and any achievements are quite small and unremarkable.

But I know things will slowly calm down and then I can get on with my job properly.  These early days are quite crucial even though they don't feel like it - if you don't establish a rapport with your target child in the beginning, there isn't much hope of you achieving an awful lot in the years ahead.  

Saturday, 20 August 2011

Summer Break

It's the school summer holidays, when everything slows down and we get time to catch our breath before the chaos that is September begins.

Happily, since my daughter is now an adult, although her college days are paused until late September, the other two activities she takes part in carry on regardless throughout all school holidays.  This has been a blessing for both of us - it means she has two days a week when she gets out of the house and away from my company to spend time with her friends and doing something constructive.  Whilst she is very capable of amusing herself at home, I do get quite concerned that she gets herself into a bit of a dull and repetitive routine.  Each day at home has a very similar pattern and if I am not careful, she will spend a great deal of time up in her room listening to the same cd's over and over again and not doing an awful lot.  I do try to make sure we go out at least once in the day and that she accompanies me on one if not two dog walks out in the countryside as well as the odd special outing, but it is impossible for me to play entertainments officer from dawn to dusk and get on with the day to day jobs that need to be done.

So this has worked quite well - with the added bonus that I get two days to myself per week as well, something unheard of over the previous 21 years.  I get no other respite - I think we could apply for more, but my daughter is not difficult to deal with and we get along very nicely...most of the time!

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In September I will have a new little boy with Down's to work with, starting in Reception class.  It's been a while since I worked with the 'littlies' - I worked with one little boy for three years until he went to junior school and then last year my target child came to me in year 1 but didn't stay the whole school year as mainstream was not the right setting for him.  So I am quite excited to go back to the beginning - I love the challenge of a new child as well as being able to see the progress being made as we go through the years together.  I think I'm going to need my running shoes with this one though...

Following the previous two posts, my daughter's HC2 form came through very quickly, approved and all correct, which meant that the prescription charge and fine that we inadvertently incurred has been wiped clean.  Yesterday I received a letter informing me that her Incapacity Benefit is about to be changed to the Employment & Support Allowance, which means more forms to fill in and possibly an intervfew at some stage, but the end result will be that she will get the correct benefit and once again be automatically entitled to free health care.

Wednesday, 29 June 2011

Prescription Charges 2

Well, I had a long conversation with an advisor at the Down's Syndrome Association today and found out all the details regarding free health care for my daughter.  Apparently, it is the case that anyone with Income Support gets free prescriptions but anyone on Incapacity Benefit does not.  This includes glasses and dental care.

However, the present government are changing the system yet again, and anyone currently on Incapacity Benefit will be moved onto something called Employment and Support Allowance, which is basically the same thing except each person will have to undergo an interview to check whether or not they are fit to go to work.  This is part of the government's plans to weed out the benefit scroungers and make sure anyone getting support is eligible.  It is a gradual process apparently as they slowly work through all claimants - hopefully with our name beginning with 'B' it won't be too long.

Once my daughter is on this 'new' benefit, she will once again be eligible for free health care - all a convoluted process, but I can see the reasoning behind it.

Interestingly, the DSA advisor said that many parents were angry that their child would have to go through an interview, but she pointed out that surely this was the best way for anyone to see for themselves that the person is genuinely unable to work.  I agree with her - if you are a genuine case, then there is nothing to worry about.

Whilst I understand all the above, I do wish that this information was passed on to the benefit claimant rather than having to find out only when something goes awry.  As carers, we have more than enough to deal with without having to follow up on each and every change to the system to find out how it affects the person we are caring for.  I have found this throughout my daughter's life - the really pertinent information is never made known in a straightforward way, you either have to fall foul of some new ruling or stumble across it.  This was one of the reasons I started this blog - I do know of parents who are ahead of the game and super-knowledgeable about everything their offspring is entitled to, but there must be a great deal like me who have enough trouble juggling work, caring, home and their own problems and just don't have the time or energy to trawl through every single website and booklet or spend hours on the phone speaking to advisors!

Monday, 27 June 2011

Prescription Fees

My daughter is an adult now and as such, her benefits are now the Disibility Living Allowance and Incapacity Benefit - which used to be classified as Income Support.  Prescription fees are free to those claiming Income Support but apparently since changing the name of the benefit given to disabled people, prescriptions are no longer free for those claiming Incapacity Benefit.

We are lucky in that my daughter is strong as a horse and rarely ill.  She has however a susceptability to athlete's foot and a fungal nail problem and has been on a repeat prescription for tablets to treat this.  Boots the Chemist have been handling this with their automatic renewal system, but last week they messed up as whoever dealt with us the previous time had failed to send on the relevant form to the doctor's surgery. This meant I had to contact the doctor and get a new prescription which was sent to their closest pharmacy.  So off I tootled, picked up the prescription and filled in the form the same way I have done for the past several years, ticking the Income Support box.

Imagine my shock to receive a letter yesterday fining my daughter £36 for falsely claiming a free prescription! (Imagine my shock that it took them less than one working day to fire off this letter claiming money when to actually get a benefit takes months....) So I rang them up and spoke to a very helpful young man who informed me that claimants of DLA and Incapacity Benefit no longer get free if you are a feckless workshy scrounger you can get your meds for nothing, but if you are genuinely needy you can't?

He did inform me that if we apply for a certificate to prove we are a low income household (an HC2?) she can claim free health care for a year..he is sending me the form, but application etc will take 6 weeks!  See what I mean? In the meantime, thankfully, he has put a note to stop any further pursual of the fine and once I give them the number of the form, this will be wiped clean.

In the meantime, I shall be phoning various helplines to find out if this is indeed true - it seems very unfair that those who are genuinely sick or needy are expected to pay for their health care.  I shall keep you informed of the results - if anyone out there knows anything further, please let me know.

Tuesday, 31 May 2011

Makaton IPad App

If you are lucky enough to own an IPad, there is a brilliant new app available called MyChoicePad which is a Makaton communication system.  It uses Makaton symbols, signs (with videos) and synthesized speech.  It will contain all the published resource vocabulary within the next few months.

This app has been created by a lady called Zoe Peden who has collaborated with the Makaton Charity to make this happen. 

Whilst a lot of us with special needs children struggle financially due to the circumstances and living predominantly with the aid of benefits, if you can afford the IPad and this app, it would seem to be an invaluable tool.  It would not only help the carer/educator to become fluent in Makaton but also prove immensely beneficial to the person with communication difficulties, giving them the opportunity to 'find the words' in order to get their meaning across. This would also contribute to self-esteem and confidence.

I have mentioned this product to the school where I work in the hope it may one day find it's way into our resources - but of course, it all comes down to budget!  In a perfect world, this kind of technology would be readily available to anyone who needed it.

Wednesday, 11 May 2011

Baby Sign Language

Out of the blue I have been e-mailed a link to a great new website full of information and resources for
Baby Sign Language.  Not all the signs are similar to Makaton, but a good deal are, and it is a good basis for communication with your baby/young child before verbal communication kicks in.  There are free downloads of wall charts and the like too, which are very  useful. Worth checking out.

Tuesday, 10 May 2011

Too Much Holiday!

I'm sure you and I could never have too much holiday, but I'm afraid the past month or so has been quite tough for my daughter.  What with the three weeks she had off from college and the double-double bank holiday weekends, her routine has been well and truly thrown.

This hasn't caused any major outward difficulties, but I did begin to notice she was becoming more and more introverted and spending far too much time alone in her room.  It was getting increasingly difficult to get her to come out anywhere, even to walk the dog, and she's a grown woman, I can hardly manhandle her!  This isn't helped by the fact that when you are at home and getting on with the day-to-day stuff, time whizzes past and you suddenly realise she has been up there for more than a couple of hours listening to the same CD over and over again.

I also noticed a definite deterioration in her speech - she couldn't even be bothered to answer a question with a 'yes', just gave me a thumbs up.  Again, it's easy for her to let her conversation slide when she is at home as we know her so well and can second guess her meaning.  However, I can't begin to count the times over the years when I have had major meltdowns myself in order to get her to make a proper sentence instead of grunting a monosyllable at me.  So frustrating when you know that if she was with a stranger she would make the effort to talk properly.

This kind of situation hasn't been a problem for quite some time as for the last couple of years her Monday and Friday activities have continued throughout the school holidays so she has had the extra outside stimulation.  So the month of April 2011 was not a good one for her.  I knew she was happy to get back into routine on the first day back at her theatre group when she was up at about 6 a.m. and dressed and ready to go about an hour before she needed to be - as well as doing half the housework on her way!

I don't think this is a situation that will arise very frequently - Royal weddings & Easter don't usually coincide - but it is obviously something I have to watch out for and try to ensure she doesn't slip beneath my radar again!

Tuesday, 8 March 2011

Moving On

As a special needs learning assistant, a lot of people ask me if I get upset when a child I have worked with for three years solidly on a one-to-one basis leaves and goes on to primary school.

The simple answer is 'no'.  You do become very attached to the child when you are working with them - after all, your duties are not just teaching reading and writing but may include helping them to eat, change clothes, make friendships, all the day to day minutiae that a parent does at home.  However, when the time comes for them to move on, the actual reaction is one of happiness  that the child is ready for the next stage in their life and that you had a large part in making this happen.  Of course there is a tinge of sadness on the actual last day of term when you bid them goodbye, but that soon dissipates and you look forward to hearing about their progress in the future.

It is slightly sad that sometimes you will not hear how they are getting on for months, perhaps years, but when you do learn of their achievements it is with a sense of pride. 

I've also had to experience the flipside of the coin when it has to be admitted that the child is in the wrong place at mainstream school and needs to go to special school as they are just not getting the kind of help they need.  This is perhaps a bit more upsetting in some ways as you have to deal with a slight sense of failure.  It would be nice to have the power to help every child that comes your way in the job, but it isn't always the case which can be tough to deal with on a personal level.  The trick is to take a step back and accept this fact for what it is, be glad that someone with more expertise is taking over and hope that they will be the ones to make the difference. Unfortunately, these are the cases where you may not ever hear about the child's progress in their new school, but it is also your turn to move on.

Saturday, 26 February 2011


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.

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!

Tuesday, 1 February 2011

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!

Friday, 21 January 2011

Thoughts on Working as an LSA

Most of the time I love my job.  There is nothing more amazing than being the source of a child making progress in an area where they struggle.  Over the years I have celebrated the big achievements and many more times, the very small ones that have been hard won.  The day a child who barely spoke when I became his LSA finally said my name;  when a little girl spelled her first word correctly without me having to step in; when a boy with severe dyslexia managed to write his first few sentences completely unaided.  Moments like these make the job worthwhile and give you the impetus to carry on despite the poor wages!

But there other times when you feel completely defeated.  Nothing you try works and you have exhausted all your strategies and tactics.  A lot of the time some lateral thinking or maybe someone else's fresh perspective on the problem are enough to get things back on track.  However, occasionally you really do have to admit defeat.  This can certainly bring you down to earth with a bump and get you quite depressed.  It's hard not to take it personally - for me anyway. 

Our headmistress said something that made me think recently - 'you can't help every child' - which is sad but very true.  You can do your best, but there is no guaranteee it will work.  Outside circumstances affect the situation too -  does the child get helped and encouraged at home; do they receive the professional help they should be getting such as speech therapy or OT; are the parents supportive of your efforts; is the child in need of special schooling rather than what you can offer?  It's not just the few hours of tuition that you give, it's the whole package.

So you have to distance yourself sometimes, accept the defeats, celebrate the successes, and when the time comes to move on to the next child in your care, be confident in the knowledge that you did your utmost for the previous one.

Tuesday, 4 January 2011

Difficult Decisions

When your child has Down's Syndrome, it is incredibly hard to predict the future.  Each child is different and affected differently by their condition -  Down's Syndrome is a blanket term and does not indicate all the variations that may occur.  General assumptions include heart problems, shortness of stature, stubborness, severe learning difficulties.  Yet my own daughter is as healthy as an ox and rarely stubborn; I've known a lad  who was six foot tall and spoke so well you would not have known he had Downs; there are other children who have the utmost difficulty in saying even one word and who understand very little of what is said to them - the spectrum is vast.

So when it comes to choosing an education for your child, it is vital that the choice is made to suit that individual child regardless of their diagnosis.  This is not always easy to do and sometimes it is a pure leap of faith,  When my daughter was a baby and visited various paediatricians, the future was predicted to be bleak.  The basic concensus was that she would grow up to be a vegetable and be nothing but a millstone round my neck - bearing in mind, this was over 20 years ago in Greece where it has taken a while for people with disabilities to be accepted.  However, as she grew and after a lot of work was put in at home with Portage and a place in a pre-school where the teacher was trained in SEN (special education needs), it was clear that she had far more potential.

Therefore, when we returned to the UK and she was given a place in mainstream infant school, I was adamant that she should stay in mainstream education for as long as possible - it was obvious that she was coping, despite having limited language skills.  She was reading by the time she moved on to primary school, was able to follow class routines, had a wide range of friends, was toilet trained, able to eat unaided, change for PE with the help of her LSA (learning support assistant) and pretty much understood everything that was going on.  So in my heart I knew she was in the right place.  Years later in secondary school however, when her peers were choosing exam options, wearing make-up and having boyfriends, it was time to make the decision for her to leave mainstream education and go to a special school teen unit.  At the time, with the options available it seemed the only choice to make and was incredibly hard to come to terms with.  In retrospect, perhaps it wasn't the best we could have done for her, but you cannot know that at the time.  All you can do is what you think best - but what has to be taken into consideration is what is best for your child, not for you.  In our case, despite a couple of years when my daughter was bored to tears at this unit and not at all happy, she came out the other side and went to college after all, and is now in a programme of activities that suit her perfectly.  I have to admit that a lot of it is more due to luck than judgement - or at least that is how it feels.

The point of this post though is that sometimes it has to be accepted that mainstream is not the best option for your child. I have worked with several children with Down's through their infant years and each one was hugely different.  One needed a lot of help initially to learn social skills (and not to swing off my hair!) but was very capable when it came to learning to read and write; another could not ever be left alone or they would wander off but was very able to speak and cope with written work; yet another had barely any language skills but understood everything going on around them and could be left to their own devices alongside the rest of the class when not in a one-to-one lesson; yet another was sweet, calm and affectionate but could not talk, sign or comprehend 90% of what was going on in a busy classroom.  

When it is blatantly obvious that the child is getting nothing out of a mainstream education and failing to reach their potential, then it is time to re-stock and consider other options. The bottom line is that the child should be given all the help they need to fulfill their potential and anything less than this is depriving them of a chance to lead as normal a life as possible in later years.  As a parent and an LSA, I can see both sides of the situation but I have always felt that the child's needs should come first - a child is totally dependant on the adults around it, therefore the adults should try to offer whatever is necessary to help that child grow and learn. It is not easy, but once you have a child with Down's, your life changes in so many ways, one of which is having to become incredibly unselfish - you have this new person who is totally dependant on you for everything and who will stay that way for far longer than 'normal' children.  Tough decisions have to be made on a regular basis and many of these decisions are very hard to face up to but have to be faced no matter how unconfortable they make you feel.

I recently visited a  special school and was amazed and impressed at the amount of equipment and facilities available.  The staff/pupil ratio was 2-1 and in some cases 1-1. The staff were knowledgeable, calm and cheerful and the children were happy.  I think in a lot of people's minds the words 'special school' conjure up an antiquated view of somewhere bleak where children with SEN are sent to get them out of the way and give them something to occupy their day.  Far from it - these days they are vibrant cheerful places which can open all kinds of doors for the children that need it.  If it comes to the point where mainstream is not the place for your child, then the alternative is very, very good.