Soon it will be April. A for April, A for Autism Awareness. In honour of which I am posting to this blog for the first time in many months.
If you are new here, it may help to know that this blog is the online presence of a book of poems about autism called First… Then… (Ginninderra Press, 2012). Still available from the publisher, or by ordering it from your local independent bookstore.
Several of the poems in this book have been used to spread awareness of autism spectrum disorder (ASD), including the title poem, Autistic Acrostic, Brain weather, and more recently I prefer, which will soon appear in the conference program booklets for the inaugural Hong Kong ASD Conference. Tony Attwood will be one of the keynote speakers.
The book First… Then… itself also recently won an award.
I am very proud that the poems have been able to speak to people in this way. Now would be a good time to thank ArtsACT, my local arts funding body, for supporting me one day per week during 2011 while I wrote the poems.
A new journey
Up to eight times a day…
Apart from giving a general update, I thought I would share something new that has recently happened on my family’s own ASD journey. My son with ASD, now a fine young man of almost ten years old, was diagnosed with Type 1 Diabetes three weeks ago.
I am so proud of how he has coped with everything – the night in intensive care, the week in hospital, the needles, drips, tubes, beeping machines, round- the-clock finger pricks to check blood sugar, insulin injections, being away from home and out of routine, all of it. There was no time to prepare him for any of it, he was so critically ill by the time we worked out what was wrong with him we just had to ride it out.
Interestingly, we had been explaining away most of the diabetes symptoms as ASD and anxiety related (increased drinking of water, increase in toilet visits, night time incontinence, being ‘off his food’). The only one we couldn’t explain was the laboured breathing, but the first hospital we tried told us that was anxiety as well (!). Fortunately we got him in to another hospital the following day, and with the care of some very dedicated people he came back to us from the brink.
And now his life has changed forever: he will need insulin, several times a day, every day, to stay alive. Along with this comes up to eight finger prick blood sugar tests a day (two in the middle of the night) and some major changes to his diet, which was very restricted due to sensory sensitivities and NOT very diabetes-friendly.
Not surprisingly this is a challenging time for all of us. Props to all the families out there already managing ASD and complex medical needs, this is not a gig for the faint of heart !
So I thought I would share our story as a timely reminder to all folks living with ASD to be on the lookout for symptoms of physical illness masquerading as ASD behaviours. And also to keep advocating for ASD friendly treatment during a physical illness (we were able to have our son inhale nitrous oxide to calm him while several drips were inserted – without this we would have needed five nurses to hold him down). Not all doctors and nurses know how to perform procedures on a person with ASD without traumatising them.
On that note, I wish you a happy and healthy April.
(And no, I have no plans to write a book of Type 1 Diabetes poems. I have no time, for a start 😉 …)