Discrimination?

For a few years now my daughter has been taken to her various activities throughout the week by one taxi company.  While she was at college for two days a week, they used to assign one driver each week to cover the whole four days she was out and about.  They used to take turns because it was not a high-paying fare, it being funded by Social Services.  The drivers were all very nice and did their jobs well, but the time-keeping was never very satisfactory.  Sometimes this was unavoidable due to traffic, sometimes it was down to the office - on many occasion she was forgotten in the afternoons and I would recieve a frantic phone call from the placement she was at asking if I could find out what had happened to the taxi.  Not very good when you consider my daughter is a vulnerable adult.

Last year was the end of the college days, plus Social Services saw fit to change the Friday taxi run to another company in order to combine passengers and save a bit of money.  I was a bit dubious at first, but the new company have proved to be reliable, courteous, punctual and even escort my daughter to the front door upon her return.

The original taxi company however have deteriorated in their service considerably.  The times they have shown up late in the mornings of the two days remaining that she travels with them have increased.  She is supposed to be picked up at 8.30 a.m. - over the past weeks we have had pick-ups at past 9.00 a.m., with the excuse of 'traffic'.  Not only is this unacceptably late, it also begged the question as to how on earth can they run a company if their taxis turn up over half an hour late - if I was due to catch a flight, I would have changed taxi company very quickly!

I have spoken to the people at the taxi company's office on numerous occasions, explaining that not only is it upsetting for my daughter to be left waiting and then turn up at her placement very late, it also causes me to be very late getting to work.  As an LSA to a little boy with Downs, it is not acceptable for me to saunter up fifteen minutes late twice a week - plus I am not an unpunctual person, this stresses me out incredibly.  Every time I explain this and ask them to please try to be on time, I get empty assurances and things are fine for a couple of weeks until the next time.

I have informed Social Services of what is going on on many occasions over the years, and as far as I know, they deal with it as best they can as after each occasion the service improves for a while.

However, this week things reached a head and I am absolutely furious.  On Monday the taxi was late again, and by 8.55 I was on my second phone call to the company asking what the hell was going on.  During this conversation, I was told that: ' While she was at college we assigned a specific driver to her for the week, but now she only has two days with us, we tack her on to anyone who is free.'

What?  So as my daughter is disabled and funded by Social Services, therefore not a lucrative fare, you think it appropriate to just squeeze in her journey at 'roughly' the right time, it doesn't matter?  Would you do this for a 'normal' customer?

When the taxi arrived, I asked the driver what time he had been given to pick her up - he told me 'I wasn't given any time, I just saw that the trip hadn't been done and came along.'  So she hadn't even been assigned a driver on this particular day.

I do not blame the drivers, they go where they are sent.  I do, however, lay all the blame at the feet of the people in charge at the office.  How dare they treat my daughter with such contempt?

So, I have been in touch with Social Services, who were as outraged as me, particularly as they are funding this abysmal service.  Hopefully by this time tomorrow it will have been sorted out and we will get given a company who give a damn.

If you live in the area, the company concerned are based in Fleet and have a capital 'A' as a part of their name.  I would not recommend them.

A Matter of Trust

Sorry not to have posted here for so very long - I have lots to say but no time to write it all down!

However, something came up a couple of weeks ago that gave me pause for thought.  My daughter is approaching 25 years old now, so no longer a child and most of the time she behaves like a young lady should.  As an adult, we have to have a varied activity programme for her to take part in during the working week - partly to give her a good quality of life and keep her busy and give her a social life, and partly to enable me to go out to work.  One morning is taken up with a careworker coming in and making sure my daughter gets to go to places she fancies visiting - usually involving local garden centres, particularly those with a varied pet selection, a buit of shopping and perhaps a visit to a park to feed the ducks, weather permitting.  Simple pleasures but I know my daughter really enjoys her three hours out and about and plans it meticulously.  Therefore, you can understand that she might get upset should anything go awry.

I am pretty sure that all mothers feel nervous about leaving their child in the care of others.  I think I have said before about my anxiety every time a new carer is appointed - I have to quell the fear that they may be a raging axe murderer or human trafficker!  Our current careworker is fairly new, a few months now, and a lovely lady.  I personally have no problem with her at all.  However, we have had a couple of quiet serious hiccups from my daughter.  The first was over not being able to stop off at the nearest Sainsburys in order to buy a paper as they were running out of time before she had to come home.  Apparently this caused a bit of a meltdown and some rather bad behaviour on my daughter's part I am ashamed to say.  She is usually very placid and her bouts of temper are very few and far between - I'm talking an annual event. Of course she gets annoyed by things and can be a bit sulky or stubborn on occasion, but then can't we all.

The second occasion was a week later and we think due to the fact she had planned her morning and written it all down, talked about it with me, but had possibly got the names of the garden centres she likes to visit the wrong way round.  So when she got out of the car at the place she hasd said she wanted to go, it wasn't the place she actually did want to visit.  Apparently her mood radically changed and she was difficult to handle and very stroppy for pretty much the rest of the morning.

I don't blame the careworker, but obviously we have to monitor this situation very carefully over the coming weeks - I do not want my daughter to be unhappy, nor do I want this behaviour to become a habit, which is a strong possibility. 

My point is, it is very difficult to reach a happy medium when leaving your child in the care of someone else.  You may be fine with the carer and see nothing wrong with them, but you have to take into account that your child may not feel as comfortable about it.  If your child has difficulty in vocalising their feelings, as my daughter most definitely has, then it is easy for the situation to get out of hand through their sheer frustration. What is construed as bad behaviour is actually a very loud protest that something is not going well and they don't like it.  It is never wise to get complacent - many years ago my daughter used to go to a lovely family for a coupole of weekends per month.  Little did I know she was very unhappy doing this as they had about 5 children of their own plus took in another little girl on the same weekends, and my daughter just hated all the comings and goings involved in a large family's life.  She made her feelings known by writing a letter to her LSA at school begging her to tell me not to send her there any more.  You can imagine how bad I felt that I hadn't noticed her feeling this way - but then she had given no outward indication.

We have a different lady this week- I think the care organisation are trying someone new out to see if the match is better.  Fingers crossed it isn't that axe murderer!

Toilet Tip

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

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

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

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

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

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

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

Summer Holidays

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

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

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

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

Things I've Learned Recently....

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

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

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

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

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

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

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

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

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

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

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

Sticks and Stones......

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

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

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

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

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

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

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

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

Etiquette!

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

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

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

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

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