Wednesday, 8 December 2010

Christmas Craft Bonanza!

It's always very exciting to see what my daughter will bring home at the end of each college term.  She attends Farnborough Tech and takes part in an arts & crafts course each Tuesday and produces some lovely work  This term we have a Christmas wreath - complete with little fabric stuffed hearts, sewn by Stacie.

We have some Christmas bunting - looks very pretty against our shelving - again, sewn by Stacie.

And the piece de resistance, a Christmas table mat, double sided and sewn with great care and precision.  This will be gracing our dining table on Christmas Day for sure.

There are also some little wrapped parcels which have been hidden away - I shall look forward to seeing what else she has made.

I'm so proud of her - I know she gets help to make these lovely things, but having seen the work she also produces at Bell's Piece, I know she does most of it herself.  Not bad for a young lady written off at birth by 'experts'....

Friday, 26 November 2010

Putting the Fun into Learning

A very useful strategy I have used over the years both with my own daughter and with the children I have worked with is getting them to forget that what they are doing is learnng.  The difference in results obtained between sitting a child down at a desk and having a boringly structured session and playing a silly game, laughing and having fun are remarkable, particularly with children in infant school.

You can still get across what you had planned to teach that day but there are ways and means of doing it successfully.  Even now after 22 years of experience, I can go in to work feeling pretty 'blah' one day and then at the end of the morning wonder why the child I have been working with has not cooperated, not learned anything or generally been difficult - it tends to be a snowball effect.

By contrast, if you turn the tasks into games and don't be afraid to wander off the target occasionally, you will be surprised at the results.  Even reading key words can be turned into a competition if you have a chart with a column of smiley faces or ticks and keep encouraging the child to get a higher total than last time, with a reward (sticker etc) at the end.  This works particularly well with two or more children (you may have to cheat a little if one of the children is far behind the other and starts getting despondent!)  I have also found that telling the child that you really don't think they will be able to do this when it is a very simple task they have done before and then pretending complete shock when they do it works extrememly well.  They love to prove you wrong!

For the really young child, don't be afraid to get down on the floor with them in order to play.  Adults are quite big and intimidating to young children and getting down to their level helps a great deal.  I had the most productive session ever with the little boy I am currently working with recently by taking him off into the school library where we could sit on the carpet with various toys and books,  sing action songs such as 'Row Your Boat', Old MacDonald Had a Farm etc., and all the time using Makaton.  At the end of a fun three quarters of an hour, I  had my first 'conversation' with this child in Makaton - he had relaxed totally, forgotten any reserves he might have had, enjoyed himself and was able to construct some simple remarks in Makaton about the up and coming playtime.

Also do try to keep your eyes open for signs that the child is learning from unexpected quarters.  Many is the time I have had to stop myself from telling a child off for something they have done because just in the nick of time I have realised that they have either just said/signed something for the first time or that they were attempting to do something you had taught them on a previous day, it had just manifested itself at the wrong time.   If you tell a child off for in these circumstances, it is easy to undo work that you had previously put in.

If things go wrong and you really aren't getting anywhere, let it go and take the child for a walk round the school or outside.  This can still be learning as you talk about what you see and the change can calm a situatuon right down.  If the child has been angry and stubborn, take them outside and do some shouting in the playground - turn it into a game of naming objects in the loudest voice, sing  a marching song and stomp about - it diffuses the mood as well as practising speech, voice control, following actions etc.

Above all, don't be afraid to be creative and spontaneous - it works!

Wednesday, 17 November 2010


Isn't it interesting how my daughter's taxi's have been bang on time every morning this week?  And how we have actually had the same driver each day?  This is how it should be....shame it only happened after weeks (months?) of incompetence on their part, anxiety and complaints on my part.

I just wonder how long it will last.  Do you blame me for being cynical?

Thursday, 11 November 2010

Breaking Point

As a parent of a person with Down's Syndrome, life always seems to be one long battle.  Right from the start you have to deal with outside agencies who half of the time are telling you things you don't want to hear, don't agree with, or that are just plain worrying.

There will be battles over schooling - where to send your child for the best, how they teach your child, how they treat your child compared with the others if they are in mainstream, how to get all the extra help such as speech therapy, one to one assistance etc.

There will be battles over discrimination, healthcare, playschemes, respite care.

It feels like it is never-ending - there always seems to be yet one more issue that you have to confront  in order for your child to be treated with the respect and care that 'normal' children receive as a matter of course.  Most of the time you can deal with it, but sometimes it really wears you down and you wish for at least a few months without having to strap on your armour and go out fighting. It gets very, very tiring.

I've had a couple to deal with myself lately and it never gets any easier.  I'm not a confrontational person by nature but if pushed into a corner, I will react - it is very upsetting though.

A few months ago we had the negligent careworker to deal with - this one reared it's ugly head again recently when our regular careworker was off sick and I received a rota in the post stating that we would get the woman I complained about as her replacement.  I immediately rang the office and explained that I would prefer not to have this woman 'care' for my daughter again and was assured that someone else would take her place. Somehow, there was a slip up. Imagine my surprise and horror when the next Thursday morning the very woman I had requested not to have ever again turned up on my doorstep.  She swept into my house, barely speaking to me and never made eye contact once.  I was already late for work and had to pray that my daughter would be safe for the next three hours and that my house would not be burnt down or the dog be boiled!  A very uncomfortable morning indeed - and a position we should not have been put into.  So once more,  phone calls to be made and a situation to be dealt with.

This week, the problem has been transport to and from various activities.  I know we are very lucky to have a taxi service paid for in order to get my daughter to college, theatre group etc. and I really do appreciate it.  However, I do get the feeling that as this taxi service is paid for by Social Services and therefore not a great money spinner for the taxi company, they do not put as much effort into it as they should.  We have a different driver every day, sometimes every trip - just as well my daughter can cope with this.  I know a lot of people with Down's and other disabilities that would find this lack of continuity incredibly distressing. Over the past couple of years we have had many occasions where the taxi has been very late or even not turned up at all.  We have even had the taxi leave from the college without picking my daughter up as he had gone to the wrong entrance.  They do not seem to appreciate that she is a very vulnerable adult and should not be left waiting on the pavement, particularly in the dark winter evenings.

The last couple of weeks the morning taxis have been arriving later and later, culminating yesterday in turning up 25 minutes late.  The excuses have been about traffic, but I am positive that if a full-fee-paying customer needed to get to the airport on time, this would not be acceptable.  For my part, it also means I am incredibly late for work - thank goodness I have extremely understanding employers.
Not only have we had to put up with that, but yesterday lunchtime I received a phone call from the taxi company asking where my daughter was as the taxi driver was waiting outside the correct entrance to the college but she wasn't there.  Cue a frantic phone call to the college by me only to be told that the taxi driver had asked Stacie her name and because of her poor speech, hadn't understood her and refused to let her get in his taxi.  He didn't think to get up off his backside and go and ask inside who he was supposed to be taking.  In the meantime, my daughter is left on the pavement outside confused and bemused. 

Is it me? Or am I correct in thinking that this is shoddy behaviour indeed?  So once again I have to complain to the taxi company, give a lecture to the taxi driver and send an e-mail to our social worker begging that this be sorted out once and for all. 

I am so very exhausted by it all.  I know that in a few days time I will feel better and wonder why I was getting so upset, but for now I am feeling very low.  Unfortunately, this seems to be the way life goes when you are the parent of a child with special needs.

Thursday, 4 November 2010

I Don't Feel Very Well..........

We all have that sinking feeling when our child says that to us, but generally they are able to tell us just exactly how they are feeling and where it hurts.  Not so easy to obtain the information if your child has difficulty with communication and even harder if it is not your child but one you are working with, so you do not have a parent's inside knowledge.  Also, I have found that children with Down's Syndrome - and many others too - learn such stock phrases as 'I have a headache' or 'I feel sick' and use them to describe any ailment or injury.

A few years ago I was working with a little girl who was pretty good at getting her meaning across, her speech was clear and made sense.  However, when it came to feeling ill at school, she was unable to express how she was feeling and even closed questions didn't really clear things up.  In the end, I drew a simple outline of a human figure (rather like a gingerbread man) on a sheet of A4 card, with a sick looking face - two sad eyes and a wobbly mouth - and wrote a heading 'I feel poorly here...'  I then laminated the card and kept it with my resources so that whenever she was feeling a bit off colour, she understood to point to the relevant area on the drawing.  It was a very helpful little tool.

Something to keep in mind is children's knack for faking it.  My daughter learned very early on in her school career that by telling people she felt sick, they panicked ('oh no, the special needs child isn't well, we don't know what to do!') and immediately telephoned me, whereupon she was taken home.  Nine times out of ten, by the time we got home there was a miracle cure and she could look forward to an afternoon in front of the tv and no school.  It got to the point where I told the school that unless she had actually thrown up on the floor, I was not to be contacted - sounds harsh, but she gave us all the run around for a long time!  In secondary school I was contacted urgently and arrived in a rush to find her lying on a bed in the nurse's room, wrapped up in a blanket and looking as if she was at death's door.  Even I fell for this one, and took her straight home - but we hadn't even reached the school gate when she brightened up, skipping along and discussing which dvd she was going to watch when she got home......and you can't march your child back into school saying 'she's faking it, have her back'!!

You may think this was just my child, but over the years I have seen the same trick pulled by all the children I have worked with and their mothers in the same position as I was - exasperated!  If I rang them, after describing the symptoms,  I tended to ask them whether or not they thought it was worth them coming to pick up their child - after all, who knows their child better than their mother!

Friday, 15 October 2010

Small Victories Mean The Most!

We are now 6 weeks into the school year and today for the first time, the little boy I am working with waved me goodbye and said, clear as anything, 'Bye-bye'.

There were three of us, the teacher, classroom assistant and me dancing up and down cheering. And one little boy who is in no doubt at all that today he did good! I love my job!

Wednesday, 13 October 2010

Obtaining & Maintaining Eye Contact

This may seem an obvious thing to say, but unless you can obtain good eye contact with your child, you will not accomplish much in the way of teaching. If I had £1 for every time I have said 'look at me' in my job, I'd be a very wealthy woman!

It is sometimes not easy to get the child to look at you however, and short of physically taking their head in your hands and pointing their face at yours - not really a satisfactory way of doing things for either of you, and no guarantee you can get the child's eyes to look your way - you can be left floundering as to how to get a result. I have found over the years that the trick is to make yourself as interesting as possible - if that means making funny faces, silly noises and generally making a fool of yourself (see previous post!), then that is what you have to do. I'm actually quite a quiet person, but at work you wouldn't know it as I sit there making puppets talk in funny voices, making loud sound effects to emphasise signing, and generally being noisy and conspicuous. It does work though, and the more the child you are working with looks at you, the more they will absorb in the way of language, signs, behaviour.

This is particularly relevant when working with younger children - they respond so much better to an attitude that is positive and outgoing. By the same token, your praise and disapproval should be large and exaggerated - if the child does something that you have been trying to get them to do, make your praise as huge as a human ticker-tape parade. Clap and cheer and wear a big smile. If they misbehave, frown your hardest and pretend you are distraught. Until they understand about nuances in vocal tone, this is the best way to get your meaning across.

Thursday, 7 October 2010

Don't Be Afraid To Make A Fool Of Yourself!

One thing I have learned along the way both as a parent and as an LSA to children with Downs, you must always be prepared to make yourself look a right prat for the good of the cause. Take today...I'm working with a new little boy and it is taking time to get him into the groove as it were. Year 1 is difficult enough as it is, but for some children it is an almost insurmountable mountain and they need a lot of effort from those around them to help them reach their daily goals.

Today that effort involved marching around outside singing 'Head, Shoulders, Knees & Toes' at the top of my voice whilst smacking the relevant body parts with a tambourine like some crazed Salvation Army reject. But it worked - little boy was engaged, joined in, learned the names of body parts, had loads of fun and signed for more. Result!

Thursday, 16 September 2010

Food Sensitivities

I don't profess to know the technical reasons behind them, but I do know that upset stomachs are a part of having Down's Syndrome. My daughter has always had problems either with being constipated for days on end or the complete opposite.

It took her years at a special unit when she was a teenager to find out what lay behind the abnormal workings of her digestive system. I noticed that when she was eating what the school prepared for her, she had the worst effects. During school holidays when I was cooking everything from scratch and avoiding processed food as much as possible, it all calmed down markedly.

The teacher of the unit would not let me supply my daughter with packed lunches (I had a lot of issues with this lady, it was not a happy time for my daughter or myself) yet seemed to think feeding the teenagers in her care baked beans and the like for four days a weeks was OK. I could go on about this, but that's not the point of this post!

During school holidays I tried excluding various foodstuffs from my daughter's diet as well as reading up on the effects of certain ingredients. I managed to narrow the causes down to a) chocolate - or anything with too much processed sugar in, and b) aspartame, which is a sweetener often found in sugar-free yoghurts, drinks etc. The effects of the aspartame are quite spectacular - within an hour of eating one of these yoghurts, my daughter would have to make the mad dash to the loo. This was not much fun for either of us.....

Since leaving this unit (hooray!) and having her meals managed properly, my daughter rarely has these upsets, which is a great relief. Meals are generally home-cooked from fresh ingredients and packed lunches made from 'safe' food. We both know when a certain food has the possibility to cause trouble and she is very sensible in avoiding them, although occasionally (birthday cake, special meals out, etc.) sometimes it's worth the consequences - my daughter is able to accept the risk.

So if your child is having unexplained stomach upsets, check first they are not eating something that may be triggering the problem. Try a few days of an exclusion diet and see if this alleviates it. Obviously, if the problem persists then you should check with your doctor that there is not some other underlying condition, but it is worth making a few changes in your food preparation if it means a life free of 'runny poo'!

Thursday, 9 September 2010

Forgive Yourself!

This week schools were back in session, as were I thought! I did something terrible on Tuesday - over the last couple of weeks I was very conscientious and contacted my daughter's social worker to inform her that we'd need the taxi service back to normal this week; I even contacted the taxi company and made sure they knew about the times and pick up/drop off points. We got up in time, my daughter got herself ready and was all keyed up to get back to work and went off happily in her taxi.

Half an hour later, I got a phone call at work from the college to say that whilst my daughter had arrived safely, her course didn't actually start until a fortnight's time. Whoops! They said the dates were in a letter, which they probably were, but I must have missed that one and just assumed that their term started the same as ours - which I think it does for full-time courses.

So I had to ring the taxi firm who were kind enough to send someone straight away to bring her back - lovely people, thank you! She was fine, completely unphased as ever, while I was mortified.

However, I have learned over the years that to err is human and there is no point in beating yourself up over it. You have to accept the fact that you have a great amount of things to deal with and if something slips through the net, it is just one of those things. As long as it all ended happily, the best thing is to put it down to experience and then move on. In the past I would have been mentally kicking myself for days, but that is just wasted energy which could be utilised far better elsewhere.

On the plus side, now I have made my apologies and (hopefully) sorted out the correct dates, we had a lovely day at home together yesterday and the promise of the same again next week, thereby ekeing out the summer holidays just a little bit longer!

Sunday, 5 September 2010

Back to School...

Not just for the children but for me as well tomorrow - up bright and early and back into the old routine with a new little boy.

Getting back into the swing of things will be hard enough for me, an adult (reputedly!), but even tougher for children with Down's who have been enjoying the home routine for six glorious weeks. I think what my daughter found hardest of all was the getting ready first thing in the morning. It was particularly hard when she was old enough to go to junior school and along came the complications of school shirts and ties to get to grips with. Fine motor skills are a problem at the best of times without these added fiddly tasks.

My advice here is to have a little word with the school and see if it is OK for your child to wear polo shirts rather than fully buttoned cotton shirts, thus reducing the buttons to one or two. Also, if a tie is necessary, either show your child how to take the tie still tied over the head at the end of the day, ready to be put on and tightened the next morning, or try and buy/make one on elastic. It is just not fair to expect your child to be able to manage school uniform suddenly and to be dressed independently on time. With tuition and repetition, your child may well eventually be able to button a shirt and tie a tie, but it is not going to happen overnight and expecting them to do it can cause frustration and misery all round. Bear in mind that it is not only the getting dressed in the morning but the changing for PE, so if you can make the process as easy as possible, the better for your child. By the same token, try and get trousers or skirts that are easily fastened, no complicated belts or buckles.

In general, I have found that trying to chivvy any child with Down's into hurrying to get ready just doesn't work. All you succeed in doing is getting the child flustered and they will either get confused or, more likely, go even slower. Even now, with my daughter at 22 years old, I do try and give her plenty of warning if we have an early start to the day and also get her out of bed in plenty of time. This way she can get herself ready at her own pace, which is far less stressful. Once it is a learned routine, then all you have to do is be the one to get them up and out of bed.

Talking of which, I know that younger children with Down's often have restless nights with bouts of walking about the house in the dead of night. I used to have to leave folded duvets in strategic places so that my daughter would have somewhere to lay down and sleep again if she was on her travels and I didn't wake. She grew out of this by about 8 years old (thank goodness!). I have come across a couple of cases where the parents of children who have these disturbed nights then leave the child to sleep in in the morning. All well and good during the school holidays, but you are doing your child no favours during term time. For a start, you are not establishing a structured sleep pattern - I know from personal experience that if I sleep late in the morning, I am not ready to go to bed early that night by any means. Far better to wake the child at the correct time for school and then put them to bed at the regular time - hopefully they will be tired enough to then sleep through the night.

Also, by bringing your child in to school late (or not at all!) they are missing an integral part of the school day. The first twenty minutes or so are spent getting belongings put on pegs and in drawers, finding out what the coming day holds and taking part in morning tasks before the register. If your child is whizzed in half an hour late, with mum in a panic and putting the coat on the peg and the lunchbox away for the child whilst pushing them in to an activity that is already half way through, how are you teaching your child to cope with school? They will be confused as to what on earth is going on, they will be flustered, you have done jobs for them that they should be doing independently, and you will also be disrupting the learning of some 29 other children who did manage to arrive on time. Do I sound harsh? It's just that I have seen it from the side of the LSA who then has to try and salvage something from the wreckage after mum has left!

It does mean a bit of thought and extra work to begin with, but if the foundations are laid early, then there is no reason why your child should not be dressed and ready to go to school along with everyone else, relaxed and happy. Good luck for tomorrow!

Tuesday, 17 August 2010

Summer Holidays

You'll have to excuse me for not contributing to this blog much lately - it's the school summer holidays and as such I'm catching up on all the outstanding jobs at home before I get back to work in September.

My daughter has been enjoying the holidays immensely. For the first time ever, she has two activities which continue throughout the year without a summer break. So although she has no college and we have dispensed with the care worker's visits for the duration of the summer, she is still attending Bell's Piece and the theatre group. This has actually worked out extremely well - I am always very conscious that while I may be quite happy doing household tasks and painting pictures every afternoon, she is possibly very bored. As she has never shown much interest in sports, play schemes were never much of an option, and another local summer respite group is always fully booked - last time I applied we were offered two days...of sports!

I am very lucky in that she can generally occupy herself pretty well- she never tires of listening to her CD's, drawing pictures and watching the daily afternoon dvd - but this year I feel she is really getting the most out of the summer - two days a week out of the house with friends of her own age, as well as our little outings and activities. I also get a couple of days to myself - a complete novelty & very much appreciated!

I'm also very glad that we have reached the stage in my daughter's life where we don't have to keep up with the school work during the holidays for fear that she will forget everything she learnt over the last term. Six weeks is a very long time for any child, but for a child with Down's it can be a lifetime! When they are in the initial stages of learning to read and write and coming to grips with numeracy, this long summer break can set them back by months unless a little work is done at home. I have been asked in the past by the parents of the children I work with how they can keep up the work and if I could give them any worksheets etc. to take home. I tend to advise them to keep it light - no child is going to appreciate their parents suddenly turning into a teacher when everyone else is out in the sunshine. But you can keep up the schoolwork unobtrusively - keep a holiday diary, getting your child to write a few words in it at the end of each day to tell what they have been doing. Tell them it is to show at school or to grandma etc. and allow them to draw pictures to illustrate it as well ( it's all pencil control!) Have magnetic letters on the fridge or the side of the bath and make a game out of leaving messages to each other. Write shopping lists together - give them the job of holding it round the supermarket and reading the items and trying to find them. Count the apples, oranges, potatoes you buy; get them to set the table, counting how many of each item them will need for the place settings; sing together, incorporating lots of stretchy mouth movements, encourage flamboyant licking of the lips after an icecream - terrific for exercising the tongue. Read stories and comics together - get them to read to you for a change, as much as they are able. It's not hard - you'll be surprised at how easily day to day activities can include valuable back-up work which will pay off dividends when your child goes back to school in September and can pick up exactly where they left off. Above all, have fun and get out and about and give your child lots of new experiences that they will learn and benefit from - all mental stimulation is of value.

Interestingly, my daughter remembers very little of any history and geography taught to her at school - but having been to Rome, Pompeii, Athens & Boston over the past years, she remembers every detail of these trips and just about everything she learned while she was there. It is because she has seen it and experienced it rather than had to struggle to understand a teacher and something in a book which just isn't 'real'.

Sunday, 18 July 2010

Entrusting the Care of your Child to Others

It might be just me, but I have always found it hard to leave my daughter in the care of a relative stranger for the first few times. The first time this came about was when she was still at primary school and we got a place on th Family Link scheme. Family Link is a brilliant idea, your child goes for a few hours or even a whole weekend to a family willing to look after them like they are their own child, giving you the parent a little respite. If you are interested, ask your social worker if you have one or get in touch with your local Social Services.

However, at the time I had a few problems with relaxing after handing my precious child over to people I knew very little about, especially on the overnight stay. A lot of emotions came into play - guilt for 'dumping' her so that I could have a break, worry over whether or not she would cope, anxiety over the credentials of this couple and whether or not they were fit to look after my daughter - silly I know, but that was how I felt. Thankfully it didn't last long - the people concerned were a lovely couple and my daughter thoroughly enjoyed each and every visit, and even though they haven't been her 'family' for many years now, we still keep in touch.

Even now I have the same feelings when leaving my daughter in the care of someone new. This week, for the first time ever, my worries were justified. My daughter has a care worker once a week to take her out wherever she wants to go for the morning while I am at work. So far over the past year this has worked wonderfully well and I have surpressed any initial anxieties as our regular care worker is a lovely lady and completely trustworthy. However, the past fortnight we have had a stand-in as she was away on holiday. We have had the stand-in lady before and it was fine, but this time for some reason she saw fit to just dump my daughter at the door of my work and leave without checking to see she had found me or even popping her head round the door to see if I was there. The first time I was a little put out but dismissed it thinking that maybe she was late for another appointment. The second time, I ran after her and had to stand in front of her car in order to speak to the woman - no sensible explanation when I asked her to please not leave my child on the doorstep like a sack of potatoes, just this woman accusing me of being rude, telling me we probably wouldn't see her again anyway and screeching off in a cloud of dust. As soon as I got home, I phoned the office to report this - in my opinion, if you are caring for a vulnerable person, you do your job properly, no half measures, because the possibility of something going wrong is high and chances should not be taken.

I am very glad that my own daughter is a very sensible young lady and usually able to cope with situations like this, but that is not the point - she should not have to be put in that position. This has been very upsetting to me - it makes me wonder what other corners were cut during her time with this woman, and I probably will never know as my daughter is unable to tell me. So while I am completely in favour of respite care, I think it pays to be ever vigilant about just who is taking care of your child.

N.B. Last week when we had our regular careworker back, she noticed in the paperwork folder that the stand-in had not filled in the financial form necessary to be completed each week - I give my daughter an amount of money to cover the costs of the day's activity. The previous week, my daughter had wanted to go bowling. We did, however, find the receipt from the bowling alley and discovered that the stand-in careworker had only purchased single games for my the poor girl had stood there and bowled all by herself while this woman sat and watched......nice, that must have been great fun for my daughter. Needless to say, I refuse to let that woman ever 'care' for my child again!

Monday, 12 July 2010

Endings and New Beginnings

As a Learning Support Assistant, I work for three years with the same child throughout infant school until they go off to juniors. I have just had to say goodbye to the little boy I have been working with since 2007 and it was with mixed feelings. On the one hand I am very sad that I will no longer be working with him as it has been such a fun three years - he's an amazing little chap, with such a personality, and you form quite a bond over this length of time. On the other hand, I am very happy that he has progressed so far and is more than ready to tackle junior school, and that I had a hand in getting him to this stage.

So now I move on to the next child, who will be completely different and a whole new challenge. I'm looking forward to it!

Monday, 28 June 2010

The Benefits of Animals

I have always been a firm believer in the power that animals have regarding children - and adults - with special needs. Firstly, animals seem to sense that they must be calm and gentle around these people - I remember being round at a lady's house in Greece for a support group meeting and noticing that my daughter had crawled off somewhere. On finding her, she was on the kitchen balcony with her arms through the railings petting two enormous German Shepherd dogs from the house next door - the same dogs that had snarled, barked and thrown themselves at us as we passed the gate earlier. They were sitting there, calm as you like with soppy expressions as she stroked their heads.

Secondly, the spur of enjoying the company of an animal can get the child to achieve far more than us regular humans! My daughter was a very late walker - she had been sidling around using the furniture to prop her up for a couple of years but she reached three and a half and still did not walk by herself. Then we got a small, lively puppy and she wanted to get to him badly...but puppies don't stay at the edges of rooms where the furniture is! So her first steps were in a manful attempt to get to this puppy and from that day on she was walking.

I realise that not every family is like ours - over the years we've had dogs, a cat, a rabbit, canaries, budgies, a chicken, two ducks, fish, gerbils, hamsters and a parrot, as well as regular visits to my sister's riding stables. But I do think that contact with animals and birds is so beneficial - animals don't care what you look like, whether you can talk or walk, whether you can read or count, they just care about who you are. This takes away all the pressure and anxiety for the child/adult and they can relax and be themselves. This in turn can cause quite major developmental progress. I have been a 'side-walker' for Riding for the Disabled and seen so many cases of children making huge steps in their learning because of the incentive of being on a horse. Add to that the physical benefits of developing balance and core strength, as well as increased mobility for children that may struggle to get around, it's a winning combination.

In Britain there are many centres for Riding for the Disabled, although I have found they tend to cater for groups from special schools rather than private lessons as the ponies they use are lent by people who have them in the stables for livery, which means after school and over weekends the horse is probably being ridden by it's owner. However, it doesn't hurt to ask around just in case private lessons are available - if your child goes to mainstream school, they will not be going in a school group. Check out the Riding for the Disabled website for details of centres near you and more information.

Even owning a pet at home has all sorts of benefits - one of my daughter's jobs is to make sure the water bowl is always full, teaching her responsibility. She had to learn that this job must be done every day, not just weekdays, or the dog would die of thirst! The exercise from going on regular walks with the dogs is so good for her - with adulthood she has trouble maintaining her weight and 'exercise' is not attractive. But offer her a hike with the dog and she's the first to be ready. She has also learnt patience, gentleness and even about loss and death, all valuable life lessons.

There is even a scheme in the south of England - Reading Educational Assistance Dogs - where dogs are taken into schools to help the less able children with their reading - a dog doesn't care if you make a mistake or take half an hour to read one paragraph. This gives the children confidence as no-one is judging them - plus the excitement of having a dog in school makes the lesson fun!

Thursday, 24 June 2010


One thing you should definitely do as soon as possible is check that you are receiving the correct benefits. Your life changes radically when you have a child with Down's Syndrome and this may also affect your income, so any help that is available is worth getting.

I don't confess to be an expert here - I only know about my own circumstances - but the best thing to do is get in touch with someone who knows. The Down's Syndrome Association have telephone advisors on the subject, as do Carers UK. The Benefits Hotline is also excellent and can be contacted by phone.

If you are a new parent, you may be surprised to discover just how early on you are able to start claiming Disability Living Allowance - don't be disheartened by the thick form you have to fill in, it is worth it in the end. The new government's Budget may change the way things are arranged in the future, but I am sure that anyone truly entitled will not be affected greatly. You may also be entitled to Carer's Allowance if you earn below £100 per week but be careful of your figures as they are very hot on pulling you up if you make a mistake, and you will have to repay any money you were not entitled to.

Also check out what you may be entitled to in the way of equipment - if your child is still having problems walking long distances yet they are getting too large for the average buggy, you are entitled to a larger specialised buggy. I wish I had been in this country while my daughter was small as we got through about 6 buggies as she was a late walker and still needed the wheels until she was about 6 years old for longer walks and days out.

If your child is still in nappies after the 'normal' age for toilet training, check with your health visitor or doctor's surgery as you may be entitled to free nappies.

It is definitely worth taking up any benefits that you are able to - you will find that new and unexpected expenses rear their heads along the way and anything that relieves the pressure, no matter how small, can't be bad.

If your child has a lot of trouble getting about, you may also be able to be a part of the Motability scheme which provides a 'free' car - although we have not been able to access this.

Sunday, 20 June 2010

Entrance Fees

If you are taking your family for a day out to a zoo, museum, or exhibiton etc., do check to see if there are special concessions on the entrance fees. Many places not only have a reduced fee for disabled people, but allow one - sometimes two - carers in for free.

If you can, look it up on the internet first but don't be afraid to ask at the ticket desk - they can only say no! In the past we have saved ourselves £19 getting into a Da Vinci exhibition completely free; also at most zoos/wildlife attractions a carer will get in for free. This even applies abroad - just don't be afraid to ask!

End of School Year Transitions

Now is the time of year when changes are on the horizon and have to be introduced carefully and thoroughly. September will see children in new classes and new schools and it can be a confusing and worrying time for all.

From the school side of things, what we try and do is ensure the annual review meeting comes towards the end of the school year if the child is moving up to junior school in order for the new teacher and SENCO to attend and let the parents know what their intentions are for providing for the child. The existing staff can also pass on what they know and what information the new school will need in order to makes the child's transition as smooth as possible.

It is helpful for the current LSA/teacher to write a short 'crib-sheet' for their successor with tips on how to help this particular child learn, behave and settle in. If you have worked with a child consistently for several years, you will have definitely learned a few tricks and strategies that will be invaluable to the person taking over.

Generally, children will have just one introductory visit to their new school/class, but in the case of a child with Down's Syndrome, it is advantageous to have at least two or three. They should be shown their new classroom and teacher/LSA and told all sorts of encouraging things about what they will get up to in the coming year.

If possible, get photographs of the outside of the school, the new classroom, teacher, LSA and anything else that might be relevant in the new setting and make a simple book for the child to take home and look at over the holidays. Write simple sentences underneath each photograph e.g. "This is Mrs......., she is my new teacher" Encourage the parents to make it a regular activity over the holidays to look at this book and coach the child as to what they can expect in September. This should be done for the transition between pre-school and infants too, and even between juniors and secondary.

We always worry that the child will miss the current LSA when they move on to a new school, particularly if they have been with the same person for a number of years. However, while it will be a challenge for the child to come to terms with the new surroundings and people, I doubt very much that they will miss the old school as much as we adults expect them to. Quite frankly, they have too many other exciting things to think about! It is a very good idea to try an ensure that their best friends are put in the same class with them - this should be emphasized at the review meeting as having a friendly familiar face in the same class is very important when making a transition between schools. When my daughter went to secondary school, her best friend unfortunately went to a different school and for some reason none of her other choices were in the same class. It made life a little difficult to begin with, although she soon made new friends.

If possible, parents should ensure that their child is actually present for first and last days of school. I know it is frustrating to have to pay extra for holidays during the school holidays, but if you have a child with Down's Syndrome you also have to consider how detrimental it is for them to turn up at a new school a few days after everyone else, when the other children have had a chance to get acclimatised, make new friends and learn the new routines. It makes it even more confusing than it would be if they started at the same time as everyone else.

If everyone does their job, both parents and school, these transitions should go smoothly with as little upset to the child as possible.

Wednesday, 9 June 2010

Support Groups

I expect some of you are like I used to be and quite wary of the phrase 'support group'. However, when my daughter was tiny I lived in Athens, Greece, and the amount of help available for the parents of any special needs child was minimal to say the least. I don't remember who it was that gave me the phone number of a support group aimed at all parents of children with special needs, but I am forever grateful to them.

In this country you will probably get plenty of professionals available to help you, but you also need to have that bit of emotional support from people in similar situations. Trying to deal with what has happened to you and it's repercussions can be totally daunting and if you are on your own, it can feel insurmountable and hopeless at times. To be able to get together with other parents and share your experiences and what you are learning along the way really helps to put your own life into perspective.

I think the trick is to take out of a support group what you need and be aware of what does not apply to you and leave that behind. I found it such a relief to talk to other parents who were experiencing the same ups and downs that I was. I also made some very good friends, a couple of which I still keep in touch with even though we are now miles apart. I even ended up running a small subsidiary support group from my home for a couple of years, and to be honest it was pretty raucous at times, but we knew that if we were having difficulties there was always someone to call on for a shoulder to cry on or some practical advice and help.

Joining a support group can also be an incredible source of information. I am amazed at how much information does not get passed on to the new parents of a child with Down's sometimes - one of the reasons I started this blog. So much of it you end up discovering along the way, but to be able to get in contact with parents of older children who have been where you are today can be invaluable. I wish that twenty-two years ago when so-called educated professionals were telling me that my daughter would be a vegetable, unable to do anything much and would ruin my life that I had had someone to tell me from their own experience that she would be capable of going to mainstream school, even college, and fit into society very nicely, thank you! When things are at their bleakest, this is what you really need - hope.

So my advice is to try a support group - there are plenty around, and if you don't know where to start, get in touch with the Down's Syndrome Association or even your health visitor or doctor's surgery. In our area (North Hampshire/Surrey) there is the Stepping Stones group who meet up in Hartley Whitney once a month.

Thursday, 3 June 2010


This is a tricky subject for children with Down's Syndrome - some are better at it than others, but it is quite a hard subject to teach.

Initially, number rhymes and songs are the best way to start the counting process. It may well take quite a few years before the child can count to 10, and even then it may not be consistent. Try and combine the rhymes with the written numbers to get through the connection between the symbol and the number.

Visual learning is the route to take - if you are counting, have something to count in front of you otherwise it is just meaningless words. Make sure each object is touched when counted and try to have objects in a line rather than jumbled. When teaching the written number, draw a matching number of dots next to it to reinforce it's meaning.

Numicon is a good tool with which to introduce counting. This consists of flat plastic interlocking shapes with the relevant number of holes in each piece. Each number has a different colour which remains the same. There are plastic pegs which fit into the holes for added visual impact. Depending on which kit you buy or have access to, there will be a board with raise circles over which the plastic shapes fit. There will also be a set of work sheets. The brilliant idea with Numicon is that each number has a shape to how the holes are arranged and if you interlock, say, three and one, they make the shape of four - genius! You can also get the child to draw round the holes to get that number on to paper in the same shape - also when drawing your dots, put them in the Numicon shapes initially to once again reinforce learning.

You can even go double-decker using the ten shape & pegs to then make...twenty, or thirty! Not that I have ever had cause to get that far as I only teach infant school age children!

Do NOT rely solely on Numicon however or you may be making a rod for your own back. The first child I taught with this system then became stuck in the thinking that only if numbers were in the right shape were they actually numbers! Combine the use of Numicon with counters, plastic toys, sweets, whatever you have to hand and introduce the idea that no matter what pattern these objects form on the table, they still represent the same number.

Addition - once again, visual learning is the key. Start off with two objects, put one on one side of the table, the other the other side and get the child to count them separately. Then bring them together and get the child to count them again, emphasising that you are counting them together. This can slowly be built up to more and more objects and combinations with which to make sums. Reinforce these sums by writing down the symbols as you teach so that you are getting across the whole concept.

Subtraction - the same method in reverse. Have a bunch of objects (start with only two though!), get the child to count them, then take one away and count them again. Over time this can be expanded upon.

Multiplication - tough! Don't expect this concept to be grasped that quickly - again, use objects in groups to represent what you are talking about. Sharing the objects between you and your child introduces the idea of numbers being in twos - also handy for teaching odd and even numbers.

Odd and Even numbers - you are probably best off teaching these by rote up to 10 to start with. It is quite an abstract concept when you think about it.

Money - start with pennies, pointing out the numbers on the coins. Use coins as above for adding and subtraction, playing shops etc. Slowly introduce 2p coins, then 5p, all the time stressing the fact that each coin has a different number on it and that this is what you are looking at rather than the actual number of coins. I would point out that even after mainstream school and college, my daughter still doesn't really understand the workings of money - she would willingly pay £5 for a sweet or 2p for a car.

Telling the time - also tricky! No point in starting this until the child can count up to 12 and understand what the numbers mean. Then begin with a toy clock and only the 'o'clock' times. Once these are secure in the child's mind, then move on to half past. In my experience, it was easier to buy my daughter a digital watch with the numbers written clearly until such time as she had grasped the clock face method.

Weights and measures - keep it visual. If you are weighing something, let the child hold it and see if it is heavy or light. Measuring - measure the child's height, things around the class, explaining the meaning of the numbers on a ruler or tape measure. You will have far better results using visual and hands-on methods than trying to get your message across on paper.

Above all, don't give up - this will be a lengthy process for some children but eventually you will get there. I have found in the past that the children I worked with can count to 10 confidently and do simple addition and subtraction by the time they are at the end of Year two. This is NOT a definite - each child is different.


I can only contribute what I know from personal experience here. My daughter began her periods very early on, while she was still 11 years old. I had begun to talk to her about what would happen in the future but it was still quite a shock for her.

However, it didn't cause as many problems as I thought. I had made sure that whenever I had my own period I did not hide what was happening. If she happened to walk in on me in the bathroom, I would explain what I was doing and why and the procedure was quite familiar to her. So when it was her turn, it took a couple of months for her to come to terms with it, but after that she was able to keep herself clean and change her sanitary towel by herself very well. Of course there have been a few mishaps along the way, but that happens to all of us!

She does experience quite a bit of pain however, and the trick here is to get in fast with the pain relief. I give her soluble paracetemol, which began as she used to have difficulty swallowing tablets, but now has the advantage of acting that little bit faster. Occasionally I have been called from school/college etc. to say that she is really suffering and then the best thing is to bring her home, sit her down with a hot water bottle and a cup of tea in front of the tv!

So I would recommend letting your daughter see the routine involved with personal hygiene during a period long before it is time for her to start her own - no, you don't yell from the bathroom 'hey, come and have a look at this!', but if the situation arises, don't hide it. I have found over the years that if an activity is familiar to my daughter, she is more than willing to do it by herself and emulate what she has seen. This is probably why she can work the DVD player better than I can.........

Friday, 28 May 2010


Guilt - we all feel it, we would not be human if we didn't. However, it is a very negative and counter-productive emotion.

There cannot be any one of us parents of a child with Down's Syndrome who does not wonder if we caused our child's condition by something we did or didn't do before they were born. It is highly unlikely that this is the case - sometimes things just happen and beating yourself up after the event will get you nowhere. You may well have unthinking relatives coming out with the immortal phrase 'well, we never had anything like that in our family' - again, it really doesn't work that way.

Then there is the guilt along the way - did we make the right decision regarding this school or that school, this treatment or that treatment. I read something a few years back that puts this into perspective - you did what you thought was right and for the best at the time. Looking back with what you know now is pointless - can you change what you did? Will feeling guilty about it make any difference to the outcome? Be kind to yourself, you are doing the best you can under the circumstances.

There was one decision I made regarding my daughter's education that I would change in a heartbeat if I could - she ended up spending four years in her teens in a placement that really wasn't right for her. At the time, I was under the impression this was the only place available for her to attend at that point in her life - I'm still not sure what the alternative could have been if I am totally honest. However, she made it through and went on to college where she blossomed and still managed to become a well-adjusted young lady. Nothing I can do now can change those four years and making myself miserable about it doesn't help.

Guilt - don't do it, you have enough to deal with already!

Statements & Annual Reviews

I don't know about any other parents, but the prospect of each annual review meeting at my daughter's schools used to fill me with dread. It is quite intimidating to be faced with a room full of professionals with the sole intention of discussing your child's future. It's just a job to them, but it is a huge responsibility for the parent and the thought of things going awry was always in my mind.

However, having worked as an LSA with three children with Down's and a fourth coming up, I have seen the annual review from the other side as well. We do have the child's best interests at heart, honestly!

You will probably be faced with the Head Teacher, your child's teacher, the school's SENCO (Special Educational Needs Coordinator), the LSA/LSAs, a speech therapist, an educational psychologist, an occupational therapist and any other professional that has a vested interest. Generally, as your child gets older, the amount of professionals thins out and it is usually only the ones with relevance that show up. Reports are submitted by all professionals beforehand and you will be given copies of these to read before attending the meeting.

Parents are given the opportunity to submit a written contribution as well, and it is well worth doing this. You can write what you are happy with over the past year's schooling, what you are unhappy with and what you would like to see happen for the coming year. Bear in mind that generally, the parents have the last word on their child's education. If you are unhappy with the outcome of the meeting and the resulting statement, you are entitled to appeal and even go as far as tribunal. This happened recently when a child's statement came under 'Down's Syndrome' and 'global delay' (which means all development is delayed) rather than a 'speech' statement which was what was needed in order for this child to receive the extra speech therapy he desperately needed. Under a 'global delay' label, the child would not receive the same funding he would receive for a 'speech' label. The parents went to appeal and then on to start tribunal proceedings at which point the LEA (Local Education Authority) backed down and changed the statement criteria.

At the review meeting it will be decided where your child will be over the coming year - this may be as simple as the next class up or may involve a change of school. You will learn who will be your child's teacher and LSA, and what provisions will be put in place for the coming year. Anything which is included in the first part of the statement MUST be implemented by the school and LEA. Anything which is in the second part is a recommendation only. Ensure that all important provisions are in the first part of the statement.

If your child has Down's Syndrome, speech therapy will always be a bone of contention - not from the school but from the LEA. Another tricky one is the amount of hours of help your child receives at school - always push for as many hours as you can, because the LEA will try and wriggle out of paying for these. Back when my daughter was in mainstream school, Down's Syndrome came under the heading of 'low incidence' which meant there were only a few children with this condition in mainstream schools and therefore they received full funding from the LEA - this means a one-to-one LSA all day every day.

Then over the years, more children with Down's went to mainstream schools and the government realised that they were paying more than they wanted to, so Down's was changed to 'high incidence' - which means the child is still entitled to the same amount of allocated hours help, but that the actual school has to pay for it. Naturally, not all schools are willing or able to pay another full-time wage out of their budget, so the help is split between existing members of staff - classroom assistants, teachers etc. This is not always satisfactory for the child concerned.

After the annual review meeting, you will receive a draft copy of the statement for the coming year to approve and sign. If there is anything you need to query at this point, do so. The final draft will then go off to the LEA and you will receive your copy after a few weeks.

The main thing I have learned as a parent about these meetings is that you should never be too scared to put forward your opinion - it is YOUR child's future that is under discussion. I wish I had known it was possible to contest the meagre amount of speech therapy my daughter received via the LEA - her schools did the best they could but with only a twice yearly visit from a speech therapist allocated to her, more could and should have been done by the LEA.

Atlanto-Axial Instability

Atlanto-Axial Instability is a fancy name for a weakness in the neck. The ligaments in people with Down's tend to be slack, which can affect the stability of neck joints.

The linked article here explains it far clearer than I can. There does not seem to be any concrete evidence that activities such as trampolining or forward somersaults can cause serious injury, but it is not a bad thing to keep in mind that a neck injury may be more of a possibility if your child has Down's Syndrome. Probably the best advice I would give is to raise this question with your doctor and check whether or not it is wise for your particular child to take part in these activities.

Personally, I asked the schools to refrain from making my daughter do somersaults in P.E. and to be honest, she never wanted to go on a trampoline or bouncy castle anyway!

From the side of being a Learning Support Assistant, I always ask the parents first whether or not they are happy for their child to take part in any activities that may carry the slightest chance of a risked injury. This way I don't have to worry about doing the wrong thing for the child in my care.

Tuesday, 18 May 2010

Choking Hazard

People with Down's Syndrome generally have a very high palette and a large tongue. This can make eating quite a challenge if the food is unruly! My daughter used to choke on a regular basis and it is very scary. She has choked on a wedge of soggy biscuit which lodged itself in her palette (someone thought it a good idea to give her a biscuit in each hand); hard fruit and veg - apples and carrots are difficult to chew and control in the mouth; a frozen strawberry - this was terrifying as she was a teenager at the time and I discovered that I can't administer the Heimlich manoevre - luckily my partner could; sweets - she has now learned to refuse any confectionary that looks like it might cause problems; the list goes on!

Your child may well not have a problem eating, but do keep an eye when they are small and trying new foods. I have seen a child I worked with choke on a carrot given at snack time when it was thought a good idea to eat snacks in the playground; the little boy I currently work with tended to scarf down a banana in two or three bites like a pelican - could easily cause problems.

Teach your child to chew thoroughly and not stuff too much in their mouths at once. If necessary, make sure 'danger' foods are cut into manageable pieces before being given. Learn what to do in an emergency - it's pretty straightforward and could save a life.

Bad Behaviour!

There is a myth that people with Down's Syndrome are stubborn and difficult to deal with. This can be true but there is always a reason - it may not be a sensible reason or one that you can understand, but there will be a reason.

A change in routine is a prime offender - I knew that Mondays would always be difficult for my daughter's LSA as she had just spent the weekend (or school holiday) at home and it would take a while to get back into the school routine. If, God forbid, the LSA was off sick or there was a substitute teacher and my daughter didn't know about it in advance, this could cause total shutdown. Very frustrating for all concerned, but it was because she didn't know what was going on and no-one had told her. I see exactly the same with the children I have worked with over the years - any significant change to the daily routine will invariably cause some kind of behavioural reaction. If possible, keep your child informed of any changes coming up - it will save everyone a lot of grief, especially your child

Difficulty in communication is another factor. If you really want a nice glass of milk and you keep getting fobbed off with orange juice with bits in it but you can't tell the person forcing it on you that you don't like it, wouldn't you get angry too? If you don't have the means to communicate, then you use what you have which can be rough gestures, harsh noises or 'bad' behaviour. By the same token, if someone is telling you to sit down but instead of just saying 'sit down please' they are saying 'I wonder if you could possibly go over to that chair over there and seat yourself' and you really don't understand what you are being told because of all those extra confusing words...well, of course you are going to ignore the request! A good reason to learn basic Makaton and teach it to your child until they are able to understand/vocalise successfully. Learn to cut down the amount of unnecessary words you use too - it's a very British thing, using ten words when two will do! Bear in mind that your child will probably only have registered the last word you used - that goes for all children. I have learned that shouting 'don't RUN' never works because 'run' is the word heard - far better to say 'please WALK'.

New people........only today I discovered that the lovely lady who takes the little boy I teach for speech sessions has been having great difficulty in getting him to cooperate. His new speech therapist also had him hiding under the table and refusing to cooperate - as soon as the class teacher walked in the room, he leapt up and behaved impeccably! New people mean a challenge - let's see what I can get away with and how little work I have to do! A lot of adults are 'scared' of being strict with a child with Downs - I try and point out that firstly, they need to be treated the same as any other child if they misbehave. I would have hated my daughter to get away with being naughty because she hadn't been told off. Also, tone of voice plays a huge part - it is no good when the child is small and still learning language to tell them off in a gentle monotone. You have to get across by the tone of your voice your displeasure - a short, sharp 'NO!' works far better than 'I'm really unhappy that you did that, it wasn't very nice' spoken in the same tone you would use to ask if he wants a biscuit. This works the other way too - be effusive in your praise, lots of clapping, hoorays and high fives work a treat!

Rough play - I have seen many times children I have worked with getting into trouble for hitting or pushing other children on the playground. On investigation, this has almost never been with the intent to hurt the other child. It is either them wanting to play but not having the way of asking or imitation of something they have seen other children do. An awful lot of behaviour is learnt by watching and imitating other children - this is a major reason why sending your child to mainstream school can be such a bonus. However, you have to keep an eye out for it working with unwanted behaviour too. When my daughter was a toddler, I had a friend who's little boy used to scream at the top of his voice if he didn't get his own way. My daughter thought this was a pretty cool noise and decided to use it every opportunity. It took me a good six months to break that pattern!

I'm sure there is an awful lot more that could be written about this subject. I will be writing about it again at a future date - any contributions gladly welcomed!

Learned Helplessness

This is a technical term for a very simple condition. If your child can do something perfectly well but is quite happy to allow any unsuspecting adult to do it for them, this is learned helplessness.

When my daughter was in secondary school - she was capable enough to attend mainstream secondary school - I discovered after almost a year that her poor LSA (learning support assistant) was accompanying my daughter to the toilet, helping her on and off the loo, and making sure she was properly dressed afterwards. I felt so bad shooting her down in flames by telling her she'd been conned into being a personal servant all this time! My daughter had been able to go to the toilet on her own for years.

Children with Down's Syndrome become quite the little experts at learned helplessness from a very early age and it is extremely hard as a parent to know when you are being 'played'. It's not a deliberate or malicious thing, but if you had someone willing to attend to your every need without complaining, you'd let them too!

So the thing is to learn what your child is capable of and make them do it, increasing the targets as they get older. I've seen parents hanging up their child's coat and school bag, putting their lunch box away and making sure they are sitting in class with the others. All fine and good in Reception year, but by the time the child has reached Year 1, they should be able to do all these tasks by themselves. Not only is this important in the learning of how to be self-sufficient, it also boosts the child's self-esteem no end to be able to do these jobs for themselves. I have found that in order to teach little tasks like this, start by having your hand over theirs while they hang their coat etc., just to guide them, and praise them for being a big boy/girl, doing it on their own. It won't be long before they get the idea. Resist the temptation to step in and do it for them if you see them struggling - a little help yes, but don't take over completely. If the coat (or whatever) is hanging but from one sleeve and dragging on the floor and it drives you crazy, resist the temptation to take it off and hang it properly while the child is watching - that totally demeans the effort they have put in to the job and reinforces the attitude of learned helplessness.

This applies in all tasks, not just self-help. In my job I have had a child who resolutely 'forgot' how to write the number '2' when she felt she had had enough of maths. The little boy I teach now 'forgets' how to count past 2 (he can count to 10 with no problem) or the difference between 'a' and 'e' if he feels he has had enough work. The trick is to keep on going until you get at least one letter/number written properly - sometimes I feel like a right witch, keeping the child there and going over the task again and again until it's done correctly, but it pays in the long run because once these tricks have been seen to work and the adult has either given up or done it for them, the child then knows how to get out of the job very nicely.

I know this all sounds very manipulative on the part of the child - I don't think it is done with any bad intentions, just laziness.

Another thing to watch out for is a retinue of other children willing to do all your child's jobs for them. Small children are always willing to aid those less able as it makes them feel good to be grown up and help. You have to explain to them in the nicest possible way that while they are being very kind and you appreciate it, the child with Down's has to learn to do these things by themselves and they won't if people always step in. I also have a similar problem when teaching a group of mixed ability children - if the child with special needs has been asked a question and needs a bit of extra time to think of their response and form their words, I have to restrain the 'eager beaver' in the group from blurting out the answer and thereby not only spoiling the opportunity for the child to join in with the group, but also knocking their self-esteem.

Obviously there will be occasions where you just cannot enforce the above. For instance, if you are late for school and work because you are waiting for your child to dress themselves, then you have to sacrifice your principles and step in - or get up earlier! Just a note from the school's side on this one - you are doing your child no favours at all by turning up late. It is hard enough for a child with Down's to learn class routines, but turning up after everyone else has settled down and not knowing what is going on just makes it even more difficult for them.

Saturday, 15 May 2010

Bursting With Pride!

Today we visited the open day at Bells Piece in Farnham where my daughter goes once a week to work in the Simply Unique art studio. She had several pieces of her work on show in their exhibition and I was quite taken aback at how good they were.

This is a clay sculpture of our dog - he is a saluki, and if you saw him, you would know that this is a very good likeness! She has the pose perfectly and the gangly long legs - the real dog is actually black on his back and top of his head but I think Stacie's problem was more a paint malfunction than making a mistake. I am so looking forward to the day she gets to bring this home - we are already thinking where we can display him to best advantage!

This is a silk painting - unfortunately the photograph does not bring out the richness of the colours, with or without using the flash.

I have seen such an improvement in Stacie's ability since she started at Bells Piece last September and really hope that in the future she will be able to go for more than one day a week - places are like gold dust as you can imagine!

Tuesday, 11 May 2010

Bells Piece Open Day

Bells Piece is a fabulous place - my daughter has been going there once a week for the past nine months and absolutely loves it. It is run by Leonard Cheshire Disability and consists of a beautiful old house with a large garden which is used to grow all kinds of produce, from flowers for sale to the most delicious vegetables and fruit. All the gardening is done by people with disabilities and a fine job they do too.

Within the grounds is the Simply Unique Studio where they produce arts and crafts for sale in their shop. This is where my daughter goes - you wouldn't catch her wielding a spade or mower! She looks forward to her Mondays here and has created some lovely pieces of work, from collages to sculpture to stencilling - I have been amazed! I know I shouldn't be, as I am an artist as is her brother and she has grown up surrounded by paintings, needlework, knitting and just about any other craft you can name. She spends most of her free time drawing too but I have seen such a progression in her ability since she has been going to Bells Piece.

This Saturday, 15th May, Bells Piece are holding an open day between 10 a.m. and 2 p.m. where you can visit the grounds, see the shop and studio and they are also holding an exhibition - I believe my daughter has some work on show! I am greatly looking forward to seeing this and will try to remember to take photographs.

If you are in the Farnham, Surry, area on Saturday, try and pop in for a look - I promise it will be well worth it and a reaffirmation of what can be achieved by people with disabilities. It is just of the 3 Bells Roundabout, a little lane next to the 3 Bells pub.

Wednesday, 5 May 2010

Toilet Training

Toilet training isn't easy at the best of times - you have to persevere and it can be frustrating. Children with Down's Syndrome can take longer to become clean and dry but you must still make the effort at the toddler stage and keep at it.

I have taught three children with Down's through infant school with another one starting this year and all have begun schooling in nappies or been liable to have accidents. Whilst we teaching assistants are used to dealing with this, we'd obviously like for the accidents to be as few and far between as possible! I have found the trick is to initially take the child (don't ask, taken them) every hour or so to the toilet and have a go at using the loo. This shouldn't continue for long hopefully, then cut it down to taking them at the beginning of each break time and insisting (nicely of course!) that they at least have a try. Once they are in the routine of going to the toilet at every break, you can slowly withdraw your involvement until they are able to recognise when they need to go and ask to be excused. Make sure you know what sign or word they are using for 'toilet' - it took me a long time for the penny to drop with one little boy that when he was pointing at himself frantically in a 'me' gesture, he actually meant he needed to!

I found when toilet training my own daughter, she was stubbornly uncooperative when put on the potty. Nothing I did that had worked with her brother was of any use. Then I realised - she had only ever seen the rest of us use the 'real' toilet, so had absolutely no idea what the potty was for. I bought one of the little safety seats that fit over the large toilet seat, popped her on with a plastic step under her feet and within a very short time she had got the idea.

Being dry at night time may take longer - I think my daughter was about 6 when I realised that the pull-ups had been dry for weeks and were totally unnecessary. (It's been a long time for us, but at the time we were able to get free nappies through the health visitor - check if this is still available - perhaps someone can let me know what the system is now.)

Learning to Read

Children with Down's Syndrome begin to learn to read by memorising simple words by sight. It is fine for them to learn the phonics (alphabet & sounds) but it will be a while before they can put together the fact that a group of letters/sounds actually make up a whole word. In the meantime, it is best to teach them sight words. In infant schools, we have a list of the 100 common first words - if you can get hold of a copy of that and start with a few at a time on flash cards, you are on your way. I have found that beginning with the child's name, Mum, Dad, I, can, see, will give you a means to make sentences as well - I can see Mum, etc. Combine these with any photos you can get of these important people, and the meaning is then crystal clear.

As a teaching assistant, I have found it invaluable to take the time to make a little 'All About Me' book with some photos from home with one or two sentences underneath describing the pictures: This is me; My name is ------; I can see Mum; I can see Dad; and so on. The child can then relate the words to actual people and places that mean something to them rather than an anonymous and possibly obscure illustration in a book.

A very helpful book is Teaching Reading to Children with Down's Syndrome which explains it far better than I can and also contains exercises and resources that can be used along the way.

Interestingly, once children with Down's Syndrome get going with their reading, they quite often have a higher reading age than speaking age. My daughter was one of the research children for the Sarah Duffen Centre in Portsmouth and it was fascinating to discover that at the age of 7 she had a reading age of 7 years old but a speaking age of 2 years old. Reading was a very good way of improving her speech as giving her useful sentences to read and learn she could then transfer the order of the words to her every day life and use them successfully.

Carers UK

Carers UK is an organisation devoted to helping and advising carers from all walks of life. They campaign for carers' rights, they provide informative newsletters, they keep us carers up-to-date with the latest developments in government legislation, benefits, etc.

You do not have to pay to join - they ask for an annual subscription but if money is tight (which is generally is!) you can have a free membership and still receive the newsletter.

I would recommend them highly - they also have a telephone helpline manned by very helpful and highly informed people who will provide you with tons of information and if there is something they don't know, they will point you in the right direction.


I first came across the Makaton signing system when my daughter went to infant school here in the U.K. - her first five years were spent in Greece. It is a very simple means of signing and very easy to learn as each sign is very descriptive of the word - pretending to eat for food, holding an imaginary mug to your lips for drink etc.

It is a fantastic way to help your child learn to speak and understand language. Children with Down's Syndrome tend to be late speakers, some of them have extreme difficulty with speech all their lives - my daughter for one. The speech can be delayed or what is known as disordered, where the child has trouble forming the words, putting them in order or thinking of the correct word in the first place. Makaton gives them a tool of communication which is invaluable - it opens hundreds of doors. If your child can sign 'toilet' before having an accident, think of the leaps ahead in potty-training! If they can specify what they would like to eat rather than it descend into a guessing game, how much easier would that make things?

There are various courses you can go on to learn Makaton, but a lot of the time you may only need a basic vocabulary just to give your child's speech a kick start. Please do not expect the school to teach it all and you do not follow through with it at home - that is the same as your child learning French exclusively at school and then going home to a household that only speaks English. It has to be embraced by both sides - after all, it is going to make life so much easier for your child, why not make the effort?

Makaton also involves simple literal written signs, which also gets a meaning across without the need to read. Very handy! I know of some children who have a little book of commonly used signs in order for them to be able to show their carers what it is they want/need.

To explain it all far better than I can, check out the website. I can however recommend it as a valuable tool in your child's development. It is never too soon to start - I have seen a very small baby with Down's signing away to her mum and getting her meaning across very successfully.

Sunday, 2 May 2010

Free Entrance to Cinemas for Carers

We have just been to the cinema and discovered that if my daughter holds a CEA card, the carer gets in to the cinema for free. I don't know about you, but a saving of about £8 per trip to the cinema is not to be sneezed at!

Visit the website to download an application form - it costs £5.50 and a photo to get a card that will last for a year. It will have paid for itself after your first visit.


Going to the dentist is scary at the best of times, let alone when you don't really understand why this stranger is rooting around in your mouth making you uncomfortable and perhaps even causing you pain.

With the shortage of NHS dentists nowadays, it can be an expensive business keeping your child's teeth healthy. Check out whether there is a Special Care Dental Clinic in your area - around us there are two, one in Aldershot and one in Farnham Hospital. The staff are trained to be calm, reassuring, and to speak in terms that are easily understandable. They use gas and air for fillings and other treatments that might cause someone with special needs distress. They provide good advice and regular follow-up appointments. Best of all, the treatment is free.

It took me until my daughter was 19 to discover she was entitled to free dental treatment at one of these clinics. Until then, I had been paying full rates at a regular dentist and whenever I asked (fairly often!) if there was any cheaper alternative, I was told 'no'. Also, my daughter was getting progressively more and more frightened of going and reached the point where she would barely open her mouth for the dentist and cried and struggled if he did any more than just look at her teeth - she had been badly shaken up by a previous dentist removing what he thought was a baby tooth with minimum anaesthesia only to discover it was an adult tooth with full roots - it hurt. After two years of going to the Special Care Clinic, she is happy to go, cooperates fully and has healthy teeth.

Friday, 30 April 2010

A River of Snot!

At work the other day I was discussing with a colleague the absence of the little boy she is assistant to. He has been off for a week with a streaming cold and my colleague asked me if children with Down's are especially susceptible to colds and catarrh. So I explained why, and she was very interested as she had no idea .

The central part of the face in children with Down's is smaller than average, which also means that the 'tubes' within the sinuses are narrower. When the children are very young, this causes colds to easily turn into infections and hence the continuous stream of mucus. It contributes to congestion - croup can be a risk also.

It is advisable to help your child out when they are like this - decongestants will ease the situation considerably. Not only is being constantly 'bunged up' uncomfortable for the child, it can also be very scary not being able to breathe normally. A vapouriser in the child's bedroom can help them to sleep easier as can a bowl of hot water with Vicks or eucalyptus oil in it to create an aromatherapy effect. (Obviously place any bowls of hot water in a safe place!)

A tip - try and teach your child from as early as possible how to blow their nose - it's quite a hard thing to do when you are little, but if they are able to express some of the mucus on their own, it helps considerably. Helps us poor teaching assistants as well!

Croup can be terrifying for any small child, but a child with Down's will not necessarily understand being told to calm down and try to breathe normally during an attack. An effective way of relieving the condition until you are able to see your doctor is to shut you and the child in a small room (the bathroom is usually best) with the hot water running and a kettle boiling in order to create plenty of steam. This goes a long way to easing breathing and bringing up phlegm. It is not a cure by any means - I would recommend taking the child to a doctor.

Generally, once the child reaches about 8 years old the nasal passages will have grown and the amount of colds will hopefully decrease and you will be free of the river of snot!

Wednesday, 28 April 2010

About Me..

My daughter was born 22 years ago in a private hospital in Greece - at the time I was married to a Greek and living out there. I was 28, already had a healthy toddler, so no tests were considered necessary other than the routine.

She arrived a month premature and I didn't see her until she was ten days old. My husband was travelling and neither the hospital staff nor our families knew what to do, so what they chose to do was tell me my baby was seriously ill in an incubater and may possibly die. I was prevented from leaving my room and told it would be best if I didn't see her. Once my husband arrived three days later, I was taken home and he broke the news to me that the baby had Down's Syndrome. What can I say - I have never felt so relieved in my life! My baby wasn't going to die - also I remembered a friend at college who had a brother with Downs that she used to take to school on her walk to college with me, and he was a lovely young man.

Unfortunately, the doctor and certain close family members were not so optimistic. We were told this child would ruin our lives, would be a vegetable, would be better gone. We were offered unthinkable 'solutions' - put her straight in a children's home or euthanasia.

We didn't know what we were going to do, but were both emphatic that we would not be taking up either of those offers. My husband was coerced into visiting one of these 'homes' and returned visibly shocked after seeing something resembling one of the Rumanian orphanages. A nurse told him that not many children there lived past the age of three.

So we finally went and got our little blonde daughter from the hospital - she'd been a hefty 7 pounds at birth, not bad for a premature baby, but was now looking thin, a little grubby and had scratched herself on the face with her untrimmed nails. My heart went out to her and I was so angry that I had been denied sharing those first ten days of her life.

The first years were not easy - it is a big shock to find the child you have is not the one you were expecting and you rack your brains to try and find anything you may have done during pregnancy to cause it. The fact is, it's mostly just a fluke. You can ask 'why me?' but the question is really 'why not you?'

Your families have the same difficulties - my Greek in-laws huffed and puffed about not having anything like that on their side of the family, but also thought she may grow out of it. I couldn't persuade them otherwise! I discovered who my real friends were - people I had been really close to just faded out of the scene while others surprisingly stepped up to the mark and offered endless support and encouragement. I wish we had had more professional support - at the time Greece was not really very good at dealing with the disabled in any shape or form. In 1989, the year after my daughter was born, the mental institution on the island of Leros was exposed as mistreating 3000 patients, many of whom should never have been shut away in such a place, including people with Down's and the elderly. Needless to say, any doctor or paedicatrician I visited always seemed to recommend some institution or other. As for professional emotional support - none.

Luckily, there was a support group run by a Scottish lady for all parents of children with special needs. This was a life-saver, not only a major source of information but also someone who was willing to talk and listen at any time of day. Through this group I found someone to give us Portage and amazingly, a Greek lady who ran a pre-school but was also trained in the USA in teaching children with Down's. She took us on and my daughter attended twice a week.

I read as much as I could and took on board the idea of providing as much mental and physical stimulation as I could for my daughter. She was included in every activity and never allowed to 'vegetate'.

Sadly, my marriage did fail - my husband was very young and totally unprepared for such a major change in his life. Plus being Greek man, a less than perfect child is quite a blow and not all Greek men can come to terms with it.

I returned to the UK when my daughter was 5, knowing nothing about the English system or what was available. Again, I was very lucky in having a health visitor who bustled in and took charge, letting me know what I should be doing and how. She whisked us straight down to the local infant school and asked if they would be willing to take my daughter on - I always remember the headmistress's response, along the lines of well, we've not done it before but we'll have a go! We never looked back - my daughter had two happy years at that school with some wonderful LSA's and teachers, went from being unable to speak to learning to read and write. She went on through juniors and even three years at secondary school. Everyone who worked with her in mainstream school was marvelous and contributed so much. Obviously there were hiccups along the way, but they were few and far between.

Now, 22 years on, my daughter has attended the local technical college for two years on a full time course and still goes there twice a week for vocational courses. I am now working as an LSA to children with Down's in the very same infant school she attended all those years ago, and hopefully giving something back. Yes, having a child with Down's Syndrome changed my life irrevocably, but certainly not in the way that was predicted when she was born!

That Tongue!

One characteristic of people with Down's Syndrome is the larger tongue which can protrude. You can assist your child to keep their tongue in in many ways.

Firstly, improve the muscle tone of the tongue by introducing little exercises - touching the tongue to the upper and lower lips and side to side. If they are unwilling to do this, you can make it more interesting by smearing a little something tasty around the mouth - a few chocolate sprinkles or some jam work wonders! Brush the tongue gently with a soft toothbrush - this stimulates blood flow and the muscles.

When your child is small, just gently poke the tongue back in the mouth with your (clean!) finger and perhaps tell them quietly to put their tongue away. Don't make a big issue about it, just turn it into something you do as a matter of course throughout the day.

Mouth exercises also help towards speech development. A tongue that is better controlled will mean clearer speech when the time comes. When your child is slightly older, introduce little games such as blowing through a straw to make bubbles, blowing a feather into the air, drinking through a straw, making funny noises - 'ooooooo-eeeeeee-aaaarrr' - singing Old MacDonald works well for that one!

Your Baby - Make the Most of the Day

You can begin helping your baby right from the very first weeks. Babies with Down's Syndrome are described as 'floppy' with poor muscle tone but it is simple to introduce little routines into your day to improve this. During a bath, encourage them to kick and splash.Afterwards, massage the arms and legs with baby lotion in order to give the muscles a mini work out. When playing with your baby on your lap or in the cot, turn it into a little exercise session by bringing the arms or legs forward and back. As your baby grows and shows an interest in what is going on around them, make their world so interesting they want to get at it - put a toy they like just a couple of centimetres out of their reach so they have to stretch to reach it.

When the baby is lying on the floor on a blanket, put something crunchy like crumpled paper underneath so that wriggling about causes a lovely noise. Use anything around you that makes a good noise or feels different - furry, bobbly, shiny, a plastic bottle filled with beans, use your imagination. It doesn't have to cost anything and your baby will get the stimulation to both mind and body from the experience.

I used to carry my daughter in a sling while I was doing the housework when she was tiny so that she was a part of what I was doing and could see the world around her. I could talk to her as I worked and she also got the added bonus of the movement together with the security of being close to her mother.

Take your baby anywhere and everywhere - each new experience stimulates the mind and senses which in turn aids development. Lots of interaction with other people and children - this will get your baby used to all kinds of situations. One thing I have noticed with my own daughter and the children I have worked with is a sensitivity towards loud noises and crowds of people - you can begin to build up a tolerance to these kinds of situation by not avoiding them. My daughter is still not keen on crowds or busy shopping malls, but she will deal with it in a sensible way - no tantrums, no crying, no refusals to move as I have seen with other children with Downs. We can travel on planes, boats, trains because she has been exposed to these experiences right from babyhood. I worked with one child whose parents were unable to fly anywhere for a holiday because of her complete meltdown when faced with aeroplanes, which was indulged - tell me, would you prefer to fly to your holiday destination in three hours or drive across Europe with three small children for two days?