One day at a time.

This morning was a good morning, last night I was organized and had everything set out last night as our eldest daughter was going to school in fancy dress today, which means a change in routine, which means -for her-stress.

The advantage of having a children's nurse as a mother is that I can get her cool stuff to dress up with, so she went decked out in a scrub top, with a proper stethoscope, pen torch and even an ID badge (my ID card holder with her library card in it, there was no way I was sending her in with anything I might actually need for work at some point!). The disadvantage is that she can sometimes get dragged down with the long-term viewpoint.

She suffers from autistic spectrum disorder and although we can see she is relatively high functioning we can also see that she is going to struggle to become independent, if she ever does. So when she said to us this morning that she thinks she would like to be a doctor when she is big I'm afraid my heart was sad not uplifted by her ambition because I seriously doubt whether she will be able to carry out any employment role.


I am certainly not writing her off, in fact she would make an excellent doctor, with her photographic memory she'd fly through medical school, her frighteningly good ability to spot patterns where no one else can would make her a fabulous diagnostician and her ability to function without sleep never ceases to amaze me. However, she remains (currently) unable to grasp the concept that the next thing you do after drying yourself when you get out the bath is to put on clothes, or that you should dry your hands after you wash them, or that when there is an inch of snow on the ground you will need your coat on and not just your shoes. It's these 'simple' skills that are letting her down, and cause her frequent outbursts of frustration.

Sometimes when I stop to wonder if she will ever develop these skills the enormity of the effect her condition is having and will have seems huge and overwhelming, sometimes I feel sad thinking of the things she might not be able to achieve, will she ever be able to manage money, time, relationships? However, she constantly amazes us with her ability to overcome whatever hurdles exist in her brain, for example at the age of 6 she has a fantastic vocabulary but did not speak her first word until she was almost 4 years old, and just the other day she scolded her father for asking her to get dressed before she brushed her teeth because might get tooth paste on her uniform, something that had never crossed our minds before! So for now we'll just continue going at it one day at a time and stop trying to guess the future!

Waste of energy?

Everyone seems to be on an economy drive these days, whether it be for environmental or economical reasons. In keeping with that after Christmas we'll be switching to washable nappies with our new addition (I apologise to all hard-core green mums I cannot cope with recovering from a C-section, 2 other children and washing a zillion newborn nappies a day) and today tried some alternative to soap powder - soapnuts and essential oils- in our environmentally evil washer/dryer. I set our central heating timed programs to be cooler yesterday and we've switched to energy saving lightbulbs all over the house in the last few months. Our sky box, which we previous left on all night (*holds out hands for smacking*) has started to help us out by deciding to turn it's self off if we leave it without changing channel for too long.
That said the type of energy I would REALLY like to conserve today is mental energy! Having a C-section scheduled in less than 2 weeks and more than 2 weeks of 2 ill children behind us a good old rest would be lovely, is that likely? No of course not.

After hiding under a quilt with my 3 yr old poorly boy for the morning I managed to coax him out from under it and after a dinner of a piece of cheese and some crisps which it took me an hour to persuade him to eat, we went to get his hair cut in preparation for the seemingly far-off day that he is well enough to go back to nursery. Armed with hat, scarf, jumper and thick coat he unwilling trudged there and back and sat in stoic silence while his unruly mop was tamed.

On our return home the phone was ringing, of course, force me to walk across our newly laid and lovely floor with my outdoor shoes on to answer it. Of course I now wish I hadn't bothered. On the other end was an education welfare officer calling to ask about our son's poor attendance at his (non-compulsory) pre-school nursery place. I admit to being a bit irritated and curtly explained that due to our local school's inability to provide proper support for our autistic daughter she has to go to a school that takes me over an hour to get to on public transport and does not have a nursery while our son goes to the local school. This means we have to rely on the kindness of friends, family and occasionally strangers to pick up our daughter so that I can get to nursery to pick up our son who finishes just 10 minutes later and (before you ask) does not have an after-school club to go to. I then catalogued the hospital appointments that both children have had over the last term, my own hospitalisation with a heart problem, failure of friend's arrangements meaning we had to keep one of them at home, then passingly mention the string of illnesses he has been sick with since starting at the local germ factory; 2 viruses each taking over 2 weeks to leave him, a chest infection and currently an ear infection requiring a week of anti-biotics.

SO no I am not irritated by the referral leaving us more to deal with, and do not think that the actual referral was motivated by the fact we have previously made a complaint (which was upheld) about the school, no not at all.

In the interests of saving energy we should probably withdraw him from the pre-school place he has, as its not compulsory, and allow him to have fun at playgroups and trips out without causing us stress and continually draining his immune system. Not to mention all the electricity used up in writing such a long blog post!