'Being an autism parent has been my biggest challenge yet, but it has also been my greatest achievement'

April 2, 2019

 

 

My name is Dani, and I am the mama to two beautiful boys, Noah & Finn. Both diagnosed at three years old with Autism.

It's a word that meant very little to me before, but it's one that has changed our world forever.

I never dreamed the day I became a mother, that I would also become a carer, a therapist, an advocate. I didn't imagine navigating hospital appointments, and conducting therapy sessions. I didn't know I would be learning to sign makaton and communicating in symbols and pictures. That I would have to become a expert in identifying and anticipating triggers before a meltdown. I never dreamed that I would have to become an expert in something so vast and varied as Autism.

They say if you have met one person with autism, then you have met one person with autism. This couldn't be more true. Noah & Finn are so wonderfully different, complete polar opposites. One label, but worlds apart. Noah is constantly seeking more sensory input while Finn is often described as a sensory avoider. One thing they both have in common though, is being non-verbal. I can't imagine the daily fight they both face unable to express their wants or needs, unable to communicate in the even the simplest of ways. I can't imagine how frustrating that must be, and the feelings of being overwhelmed with the world around them, and how frightening this must feel.

Life definitely threw us in a different direction, and I am now on a path I never expected to walk, in shoes that often still feel new to me. Nothing could have prepared me for this journey, and life raising non verbal boys. Sometimes I wonder if they will ever be able to talk. If I will ever hear the words 'mummy, I love you', or If we will one day be able to have a conversation. So many questions, so many unknowns.

Being an autism parent has been my biggest challenge yet, but it has also been my greatest achievement. I have learnt more from Noah and Finn than I ever did the years before them. They have both shown me the most amazing strength possible, and raising two boys on the spectrum has made me stronger than I ever imagined I could be. Everyday I learn something new about the world through their eyes. And seeing this world very differently hasn't stopped them filling mine with so much love and happiness.

Not every day is easy, and some days are just about keeping our heads above water. In between the challenging behaviors, lack of sleep, and daily battles to receive the services they should be entitled to, we also have to face a general lack of understanding. One of the hardest parts of being a mum to autistic children is the lack of understanding from the people around you. 

I know the world has a long way to come in understanding and accepting autism. I'm slowly learning it's not enough to simply say ' the world doesn't understand'. It's up to us to make the change. We need to advocate and educate. We need to share our experiences in the hope of making even the smallest of difference. Autism doesn't come with handbook. Autism doesn't come with manual. But it can come with a mother who never gives up.



Author credit: Dani Purkis

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