Monday, 10 October 2011

Don't worry just Google it...

Does anyone else Google excessively? Does anyone else use Google to investigate something that worries you? I do.

I spent eight years as an mature student at University, staring at a computers ;hoping for inspiration for essays or tutorial work, for dissertations and the rest. I would take a break from thinking and use social networking sites to reconnect with the real world whilst being stuck behind a PC on a deadline restriction. If I wasn't on Facebook, I'd be ironing or doing some other boring chore like cleaning the tile grout with a toothbrush and other tasks that really could have waited but provided an excellent procrastination tool during deadline times. If the house was clean, my FB contacts up to date, I would sit and Google my weird trains of thought that I have. Books, during this time, were becoming my enemy and I had barely any time to look at fiction, unless you count the increasing workload of Roman history I had (apologies, that's a really bad in joke!).

So now with the advent of another child, I find myself repeating these old patterns. Being in the company of people who babble incoherently, I turn to Facebook for a little stimulus. I am very lucky, in that I have lots of learned and academic and interesting friends to engage with on Facebook. If I'm not on there, I am now blogging about my weird trains of thought. Books (or works of escapist fiction) still figure very little in my life at the moment, preferring to read newspapers and blogs for my intellectual stimulus. My one habit that has changed is my Googling. I am encountering so many new things in my life with raising two kids and having things like high school involved that when I Google, I tend to Google problems. There is one problem that has been on the down low, if you will for the last six months. A problem that I was petrified to Google and consequently set off a train of weird thoughts.

I have vaguely hinted at B's lack of speech before and I have sort of hinted towards an overarching worry having had another child after the first one was disabled. It's something I am not really allowed to talk about in real life. Any exploration of this topic is met with responses of "och, she'll be fine!" and "don't worry!". I am a rational and intelligent woman and while I do hope that these people are correct, I knew full well that when I had a second child that I was in some respects playing Russian Roulette. Researchers still have no clue whether autism is genetic or environmental or a combination of both. I have tried to talk about it with family but it falls on deaf ears or people look away as the topic makes them uncomfortable. Although our family is bigger now, I am the only one who dealt with A's diagnosis, I did it alone. My parents were there but it was beyond
their understanding. They love A dearly but they don't understand him.

I spent a huge portion of his life fighting for things and I appear to be doing it now. I have been asking the Health Visitor for a Speech Therapy referral for the past six months and they have dragged their heels for that entire time. I have sought out private speech therapy and was in the process of organising an appointment when the HV finally agreed to refer her to speech therapy. They still maintain that I am being paranoid, although never having actually spent any time in the same room as B. They said that the process and paperwork would take between four and five months to sort out and to obtain an appointment. So I decided to push ahead with a private assessment. The day I was due to phone to book and appointment, I received an appointment letter from the NHS SLT for an assessment, six days away! My first thought was not "wow, that is pretty good administration!" but why had they pushed this though so quickly? Anyway, we have a appointment for an assessment on Wednesday. I do see differences in A and B but I stress myself out trying to remember all the nuances that A displayed prior to his diagnosis. Traits only became obvious in hindsight and it was over a decade ago! A also had regressive autism so while she appeared to be streets ahead with his development in comparison to his peers, he stopped doing things at the age of two and a half. While he was dry at 18 months and out of nappies a few weeks later, he was back in them at two and a half. The few words he could actually say, stopped altogether and he retreated more and more into his own world with me, all the while trying to pull him back into this one.

So at 23 months with a repertoire of only Mum, Blue, Boot, Pooh, Spoon, Book, none of which are actually discernible to anyone other than me or OD, I am worried. I think I have a right to be worried and to hope that I won't have to go through all of this again. I have no idea what it will like to walk through those doors again, to the place where they first sat me down and told me about A's autism. I do feel like the worst parent in the world when I hope that life will be easier for B than it is for A but only time will tell.

In the meantime, I am Googling and bringing up all sorts of horror stories. While this pickles
my brain, I feel like I am doing something. Articles like Constantino, J. N (2010) Sibling Recurrence and the Genetic Epidemiology of Autism. AJP, detail the higher possibly of having an sibling who will exhibit ASD like traits yet not warrant a full diagnosis. This paper goes on to be cited by the latest paper on sibling and ASD connections by Sally Ozonoff and her team at NIH, which tell us that the prevalence of ASD diagnoses in siblings are much higher than previously thought (from 3-5% to 10%, higher in male siblings). I sort of knew this from my own research already and in meeting ASD kids with younger siblings. As much as this terrifies me, the paper highlights the need for screening in siblings and to adopt an attitude of active infant intervention, rather than the current, let's just wait and see approach. It highlights also the need for genetic counselling in the country for parents of children with pervasive developmental disorders. It is a bit of a sticky issue and I don't agree with it being used in cases of selectivity in reproduction. We went into this with our eyes open but knew it would be hard. Perhaps if such counselling was available at preconception, then infant screening would take place? But then the NHS is struggling so what can we hope for?

The wait is hard and so I content myself by Googling...

2 comments:

  1. Thinkingof you lovely, I hope that the speech assessment gives you some answers. 

    Much love xx

    ReplyDelete
  2. Thanks Hannah! It was okay. Just waiting on the official report. xxx

    ReplyDelete

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