CF Awareness Week

Autism Awareness Month

April is autism awareness month and we are all posting it on our Facebook pages to help share awareness of this invisible condition.

  
My beautiful baby girl had autism.  She was diagnosed just after her 4th birthday in 2008.  I always knew something was different about my baby, she didn’t like her pram or her car seat, she didn’t like to be cuddled and didn’t like too much noise but I was ignorant about autism at the time and didn’t know these can all be signs.  Instead it was when I had trouble potty training her that the health visitor started asking questions.  I could see her mentally ticking off boxes as I was answering her questions.

She put Órla forward for tests and we had lots & lots of questions and forms to fill in but eventually she got her diagnosis of ASD Autism Spectrum Disorder a few months later.  Now a lot of parents don’t like ‘labels’ for their children but I was so pleased because we could set about understanding her world and get the proper help and care she needed.

We began an intervention program for 12 weeks and learnt a lot more about autism and everything seemed to click into place, it was a long and difficult road for both myself and Órla and as she grew older I was able to explain to her why she felt/acted the way she did at certain times.  Órla hated her autism and would ask when she gets to heaven would she still have autism, I would assure her she wouldn’t, little did we know how soon she would get to see for herself.

I took several courses on ASD and Órla’s behaviour started to improve greatly, her ‘meltdowns’ got less and less as we began to understand her condition and stopped trying to force her into what we term ‘normal’.  My baby girl wasn’t defined by her autism her wicked sense of humour always shone through.  Yes she was particular about who she played with or whose house she would go visit or who cooked her food.  She had a heightened sense of smell so didn’t like to be around babies or men.  She also hated noise but loved singing to herself at the top of her voice and we loved listening to her.

How I miss those beautiful songs.

Órla did not die from autism she died from cystic fibrosis but because of Órla’s autism the management of her CF suffered, she was not a willing participant of any of her breathing excercises  or indeed taking her oral medications.  She suffered terribly whilst having IVs and doctors & nurses poking and prodding her.  When things took a downturn she point blank refused to wear an oxygen mask or take her morphine willingly.  

In the end it was because of her autism that her cystic fibrosis took hold far too quickly and I lost my baby girl at only 9 years of age.

Please please help share Autism Awareness Month in any way you can so that people can understand more about the effects of this invisible condition.

  
Miss you bubba ❤️