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.