Sunday, September 14, 2014

Past weeks ...

So, where are we at. We now have a certain diagnosis of Autism Spectrum Disorder (ASD). Not provisional as we first thought. We found out Wednesday. I cried. It wasn't as if it was a shock, or something we did not already suspect but hearing it from Dom's Developmental Paediatrician who is renowned for being very conservative and cautious in diagnosing children, let alone our darling little three year old with a life long disability (Autism), it seemed awfully final. The Paediatrician apologised. With most illnesses you can pop a pill, take antibiotics and the illness and symptoms in time subside. Early intervention will no doubt help Dom considerably (we hope), but Autism will be with us forever. Having said that, we are actually doing pretty well and my little mate is as happy as ever.
Dom needs determined people to advocate for him and he has found those people in our family, particularly in me - I am fiery at the best of times! We are determined to take early intervention 'by the horns' and not let Autism take over our lives or the happiness of our family. Autism will not define Dominic, but will know doubt provide him with ample challenges.

A friend suggested that I write a post about the signs and symptoms of Dom's Autism and when I first realised something wasn't quite right. I can't really put my finger on it, and having said that there is a lot of normal 2-3 year old behaviours that can potentially be 'red flags' for ASD.
I certainly have had considerable concerns about Dom's behaviour since he turned two and overtime as he has matured, these concerns have only intensified.
Yes, in retrospect I feel like an idiot. I am a Child Health Nurse and Midwife. How could I not have noticed the signs earlier? I have thought long and hard about this. Not in a critical way - I can't turn back time and I know that I am a good mum. But I honestly think that we have been (and still are) so consumed in the perfection of our little boy, that we just unconditionally accepted/accept his 'quirks'.

So, where to start. Dom has never liked to be cuddled. As a baby he would almost balance
when you held him as opposed to leaning in and snuggling. I am pleased to say that we have worked hard on this and he will now 'allow' me to give him cuddles. I say 'allow' because he will rarely seek them from me. I think it is fair to say that Dom 'tolerates' the cuddles and kisses demanded by his needy Parents and Grandparents on a daily basis :)

Dom rarely cries (except in the early days when he cried all of the time!). We justified this with comments like, 'he just doesn't like a fuss'. His eye contact although improving greatly, was always poor and at best, brief. He has always played obsessively with toys - repeating the same action over and over again and he does no imaginative play. I am sure he thinks to himself when he sees other kids pretending to feed a doll, 'don't those kids know that dolls don't eat food?'

Dom never waved or pointed to things - an absolute 'red flag' for Autism. It is only in the last month that we have taught him how to wave - it is a completely un-natural thing for him, although he clearly loves the cheers and laughter he gets in response to his wave which is more like a flap :)
He will now point at things that he is counting or wants to show you, but we have had to teach him to do this. All these things for him, are not instinctive.

One significant behaviour that has distressed me greatly is Dom's inability to let us comfort him when he has hurt himself or is in pain. It always seemed that we were causing him more distress when
trying to comfort him. This would inevitably lead to melt-downs (far, far more intense than your average tantrum) where he would scream, throw things and at times become violent, hitting us repeatedly.

Earlier warning signs from when he was a baby was his (continued) obsession with the front loader washing machine, (at 9 months he would sit in front of the washing machine for an entire cycle -
depending on how many loads we needed to do, this could go on for a long time!) his obsession
 with the vacuum cleaner (spinning the wheels for hours on end and crying inconsolably if it was put away!) and ceiling fans. My goodness ceiling fans have been a MASSIVE obsession. As has the
DVD, coffee machine.... Should I go on? :) He has also always loved red lights. Dom loves numbers
and would sit in front of the stove and call out the red numbers on the digital clock while I cooked dinner. His knowledge of numbers is phenomenal, as is his memory.

Things finally came to a head about 3 months ago when we became considerably more concerned
about his tantrums and outbursts at home. Although he doesn't hit other children or his kindy
teacher's (thank goodness), he does hit those who love him most. Yes, even my beautiful Dad has copped a few bops on his bald head. Thankfully Dom's wonderful kindy teachers did their homework, expressed concerns about the fact that Dom doesn't socialise with other children, plays obsessively with toys as well as countless other concerns, and the rest my friends is history.

Dom can speak and what he can say, he says really well. You should hear him sing - he has a beautiful singing voice! He does not however, make conversation. He only communicates needs and wants. If I ask him how his day was at kindy, I am always met with silence. I cannot wait for him to have conversations with me. Having said that, he has a smile that can melt your heart and other ways that he communicates with you. You can tell when he has had a good day because his beautiful blue eyes are clear and sparkly - like when you hop out of a pool. On days where he is overwhelmed his eyes are heavy and almost cloudy, giving nothing away at all - deep in thought and troubled.

I could not write this post however, without also making comment on the wrong things to say to someone who has had a child diagnosed with ASD. I don't mean this to sound nasty, ungrateful or unkind but things have been said to me over the past couple of months that have caused me considerable frustration, often from well meaning people who have simply know idea what to say. 

Allow me if you will, to provide some feedback.
Making comments like, 'we are all on the spectrum though aren't we?' is not helpful. This comment
has been made in jest I get that, but there is a considerable difference between having little quirks that cause you no interruption to your daily life, compared to the enormity of and the undeniable distress of having Autism. It is beyond heartbreaking to see you child so upset and not be able to do a thing to help them.

This is similar to comments like, 'it could be so much worse'. We realise that but at this point in time, this provides me with little comfort.
Someone has even said to me, 'he could have cancer!' We are obviously beyond grateful that this is not the case, but again comments like these deny parents an opportunity to appropriately express their grief and sadness. My best friends response was perfect. She told me she was sorry. She didn't try to make it better, she allowed me to talk. I am yet (thankfully) to have anyone comment on whether I am concerned that immunising Dom, caused his Autism. 

So, there we go. We are ok. We will start intervention and eventually adjust to this diagnosis. I wonder how long it will take me to become completely comfortable with Dom's diagnosis, but remain beyond grateful to my Mum and Dad, family and wonderful friends who have shown me (us) such genuine love and concern over the past couple of months.
We are definitely a very lucky little family and so blessed to have such a beautiful little boy.

Normal Autism Awareness Quote  Donation to by AllisonBDesigns. , via Etsy. - challenging the norm!

Apologies for the crazy formatting on this post, but I wanted to publish this regardless. Once again, Blogger seems to be full of gremlins :) .....


  1. Thanks you so much for sharing your story with us, it is beautifully expressed and very raw. It sounds like you will need a toolbox of retorts to stop from imploding from insensitive remarks! Wishing your lovely family all the very best for the early intervention. Looking forward to sharing your journey via your blog, we can't walk it for you but we can walk it with you for some of the way anyway. Xxxx

  2. You are amazing Kate.... Thank you for letting us into your courageous family.
    I am in awe... You and Chris are amazing parents xx. Gabrielle