Wednesday, 9 April 2014

Quiet Time

I haven't written in here for so long - there's not been much to write about.  The little boy I was LSA to went on to special school last September - a very difficult decision to be made by his parents, but definitely the right one.  I would be the first person to champion a child with Down's Syndrome staying in mainstream schooling, but sometimes it just isn't the right placement for that child's needs.  It felt like a bit of a failure, but we did our utmost and know that we did help his progress a lot, but we just weren't qualified to take him further.  Last I heard, he was thriving at his new school!

It's been a difficult time in some ways with my daughter - she has calmed down a fair bit, but I still feel she is going through some kind of late adolescence as far as behaviour is concerned.  She still gets cross when I brush her hair, but at least she tolerates it now.  We don't have as many disagreements, but she is proving quite strong willed which is fine, but sometimes can be detrimental to her wellbeing.  She hasn't worn her glasses since last year and nothing I say or do can make her.  Today we have an eye test so it will be interesting to hear what the optician says about that!  Her eyesight was never that bad, she can function without glasses for everything but close work, so I am hoping it's OK!

She is still painting pictures in her spare time and that is great - we have had a foray into paint by numbers which I don't feel is as creative as her previous work, but on the other hand it does require a lot of thought and concentration in order to find the numbers and use the corresponding paint - so swings and roundabouts there!

The care company have finally started to send my daughter's favourite careworker on a more regular basis which has made her happier - I think half her behaviour problems were a protest against having someone she didn't like very much taking her out each week.  It didn't matter how much I pointed this out to the office that arrange it all, they were adamant that we should only have who we were assigned, rather than someone who we liked, and that it was inconsequential how much upset it caused.  Yet another example of the views of someone with special needs being ignored - however, for the time being the status quo has been restored and life is far more pleasant.

So, life goes on with it's ups and downs and we are just carried along!

Tuesday, 29 October 2013

Changes...

While I was working on helping my daughter get more out of her life - still a work in progress but coming along - we were having some other behaviour problems.  This year she suddenly seemed to be going through a kind of adolescence (a bit late at 25 but there you go!) with a lot of independent behaviour and a great deal of stroppiness over little things.  One of the main bones of contention was having her hair brushed.  I'm very willing for her to do her own hair, but the bottom line is that most of the time she just wafts the brush at the front part and leaves the back straggly.  It's bad enough that she chooses to wear her oldest clothes which are battered and generally coverd in paint splashes (but they are her favourites so I try to keep my mouth shut as it is her choice), but I draw the line at letting her out of the house looking like she just got out of bed.

So I used to brush her hair before she goes out and get hands waved, head covered, flinching and more recently, I got hit.  I was trying to be as gentle as I could but nothing seemed to work.  It came to a head when I lost my temper at being thumped every day for a week, yelled at her and threw the brush across the room.  Not behaviour I am proud of.  I was appalled at what we had been reduced to and had to take a step back and think about what I could do to redress the situation.

So, after a chat with my daughter about how she should never hit anyone, which I think sunk in, I went on the hunt for a magic brush.  I eventually found something labelled as being able to get through tangles without pulling but it cost £11 - that's a lot of money for a plastic brush that might not even work.  I stood in the shop deliberating for a good five minutes then finally decided that if it did work, it would be the best £11 I spent that month.

It really is a magic brush - I am now able to brush her hair without fear of being hurt myself.  She is still not happy about it, but her hair is not getting pulled inadvertently, neither are the bristles scraping her scalp - I don't know if either of these were the problem, but whatever it was, we seem to have got rid of it.  You have not idea how relieved I am that this has been solved - it was making both of us so unhappy.  Little things seem to cause the biggest reactions, and many times it is impossible to see the wood for the trees when you are in the middle of it.

Now, about those tatty clothes....

Monday, 2 September 2013

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.


Sunday, 26 May 2013

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. 

Thursday, 28 March 2013

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...

Sunday, 17 March 2013

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.....!

Wednesday, 13 March 2013

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.