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.