Quick Update

I'm glad my last post seemed to get a response - it was quite difficult to write at the time, but I find by writing things down, it helps me to think.

After the 6 week school holiday where I have been at home the whole time, we managed to get into a better routine.  My daughter is currently really into painting at home, and since giving her a set of acrylic paints and a book entitled Painting Masterpieces By Numbers (or somesuch), she has been spending her mornings creating her own works of art.

We've also been out and about on little excursions doing the things she likes, such as feeding ducks and fish, having a cup of tea at a garden centre, etc. and I have tried to include her more in the daily routines - not that she always wants to be included, but at least she has had the option!

She is still quite reticent, but seems a lot happier.  It is very much a work in progress and as I return to the day job today we shall see if this has an effect on her behaviour.  I am hoping we are on the right road at least.

Never Assume....

I think lately I have been guilty of assuming that my daughter is quite happy occupying herself whilst I am either doing the housework, working, etc. when in actual fact, I suspect she might have been feeling very bored and undervalued.  It is very easy when someone is unable to communicate their feelings clearly to think that everything is fine with them,  just because they don't say it isn't.  It's not until things start to go badly awry that you wake up and realise that perhaps there have been signs that you have not noticed or have chosen to ignore.

My daughter is not one of those loud, confident and out-going people with Down's Symdrome that you see - she is very quiet, quite shy and due to her difficulty verbalising, quite lacking in confidence.  If something is bothering her, she will not (cannot) say anything - on occasion I will find a piece of paper with one of her 'essays' on it and notice she has written down a complaint about her life.  When this happens, I try to address the problem and sort it out as best I can.  But that is not always the case.

We have noticed of late that she has become virtually silent at home, answering questions in monosyllables and rarely starting a conversation.  She has also become a bit peculiar in her behaviour - resisting me when I try to help her with personal care such as brushing her hair or straightening a jacket for instance; continuing to walk when I am asking her to stop; other little quirks and tics appearing.  I have been worried for quite some time and did wonder if I have been doing enough to keep her mind active and her self-esteem high.  Since she finished college last year, she has three days a week where she goes to a placement, two at an art studio and one at a social group. One day a week she has a careworker take her out for the morning while I am at work - we have had a few hiccups with this lately, plus the routine has become the same every week which must be dull but my daughter has not asked to go anywhere different. Again, have we assumed that because she hasn't said anything that she doesn't want to do anything different?

When she is home, my daughter spends her time either drawing, writing her little stories or daily diaries, and watching tv - a lot of tv.  I charge around trying to get everything done singlehandedly around the house and garden, as well as holding down a morning job plus working from home during the afternoons and evenings.  As I am so busy, I tend to take over everything in order to get it all done quickly - should I be delegating some jobs to my daughter and biting my tongue when it takes her five times longer to do something than I would?  Yes, I think I should.  I have been making more of an effort to include her in daily activities and it pays dividends - this weekend she has been chattier than for a very long time, and far more willing to join in.

I am embarrassed to think that through some misguided sense of caring I have actually been a major contributing factor in making my daughter unhappy. We all need to feel valued and have a purpose in life - having your every need catered for and being able to sit around all day is fine for a short while, but in the long run must be soul-destroying.

So we will continue to get her up and about, perhaps cooking, using the vacuum cleaner, taking a bit more responsibility, and hopefully be able to repair the effects of the past few months. 

Happy Ending?

Just a final note to say that our new taxi company turned out to be the same company that used to take my daughter to college a few years ago, until the powers-that-be decided to change them for a cheaper option. So I know that they are reliable - they turned up with five minutes to spare each day this week, plus the driver remembered Stacie.  So we both started out days on time and with a smile on our faces.  It makes a huge difference to the whole day and has relieved a burden that has been on my mind for far too long. Long may it continue!

We also had a good morning with the careworker last week- my daughter has had a few problems lately for some reason.  She got a bee in her bonnet about wanting someone else that she used to have last year and her behaviour deteriorated as a result.  I think we have nipped this in the bud - we will see today if she has returned to her previous cheery attitude towards the poor lady. Fingers crossed...

Transport Update

I received an email on Friday afternoon from Social Services saying that we will be assigned a new taxi company for Mondays and Tuesdays, hopefully with effect from next week.  Let's hope they have better ethics with regard to timing! 

Now I have to go through the stress of worrying whether or not the new drivers will be axe murderers.....!

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.