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!

Have you ever felt like screaming?

This is my two angelic children watching Thomas the tank on my iPhone while waiting for a paediatrician appointment. It was a brief calm before the storm.

Having one child already diagnosed with autistic spectrum disorder at the age of four following, literally, 2 years of begging someone to pay attention to our concerns, you could be forgiven calling us stupid when we assumed that the assessment process would go smoother with our second child. The assessment team know us, they know we are not neurotic, they know we are not after money or charity, they know we have experience with a variety of conditions personally and professionally and we just want proper care and support for our children, so we would assume they would take us seriously second time around. Wrong on all counts.

Today we had the pleasure of being totally grilled by a 'professional' who has never before been involved in our children's care and just happened to turn up in our last appointment, and all because we went out of our way to reverse a bad situation we were in to accommodate THEM and make their jobs easier. At an increased financial, time and emotional burden to us I might add.

After I literally turned my back on this offensive person to address the professional we actually came to see every concern we had was dismissed, even physical concerns that had been confirmed previously by medical exam had magically disappeared today. Wow this pair truly are miracle workers.

So we are left to seek a second opinion on the physical stuff and cool our heals over the the developmental stuff having no option but to go with team we have the misfortune of living near. But once again we are looking at houses in other NHS trust areas to escape the parade of questionable care we have recently been subjected to, sadly its not an option right now but as soon as it is they won't see us for dust.